Nurse -led Biliary Pathway- a service improvement implementation project

Feb 15, 2024

Nurse -led Biliary Pathway- a service improvement implementation project

IMPLEMENTATION OF AN INTEGRATED MULTIDISCIPLINARY DAY HOSPITAL
FOLLOW-UP SERVICE TO IMPROVE THE MANAGEMENTOF PEOPLE DIAGNOSED WITH ATYPICAL PARKINSON’S SYNDROMES

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Cardiff University
School of Healthcare Sciences
MSc (18/19 NRT079 DISSERTATION JULY 2020)

Presented to Cardiff University in partial fulfillment of the requirements for the degree of Masters of

[ADVANCED PRACTICE]
Word Count: 19990
Date of Submission: 07/07/20

Implementation of an integrated multidisciplinary
day hospital follow-up service to improve the management
of people diagnosed with atypical Parkinson’s
syndromes

Acknowledgments
I would like to extend my gratitude and thanks to my family, friends and work colleagues for their support. This workbased project has presented many challenges both physical and mental and without their understanding I feel I could not have got through it. A particular mention to my husband for his knowledge and skill with all things I.T. related. He came up with solutions to all my technology issues and managed to resolve some very tricky situations. He also provided regular refreshments and ensured that I kept going even when I felt like giving up.
A special mention must also go to my tutor. She managed to calm my anxieties with practical feedback and supportive words and was always available for advice. There were times when I felt I couldn’t continue but she gave me the courage to carry on.
Thank you all.

Abstract
Atypical Parkinson’s syndromes are rare degenerative disorders that are rapidly progressive, have decreased life expectancy and little or no response to symptomatic treatment in comparison to Idiopathic Parkinson’s disease (IPD). Relatively unknown they present with a plethora of complex symptoms which require immediate and consistent intervention. They include; Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), Multiple System Atrophy (MSA) and Dementia with Lewy Bodies (DLB). The National Institute for Health and Care Excellence (NICE) Parkinson’s guidelines (2017) stresses the importance of early multidisciplinary team (MDT) involvement at the point of diagnosis as an optimum standard of practice. The paucity of literature pertaining to this group of patients is reflective of services which treat all Parkinson’s conditions collectively regardless of trajectory or treatment (Hohler et al. 2012).
The aim of this local workbased project involved developing an integrated multidisciplinary follow up service for people with atypical Parkinsonism within a day hospital setting to address and potentially resolve variability and delays to care. ‘The Model for Improvement (NHS Wales “1000 lives” improvement 2014) incorporating three questions and a series of PDSA cycles, was used as a framework to guide the process and maintain focus and structure. A retrospective baseline audit (October 2017-October2018) of 22 patients was performed to compare with data gathered following the service improvement. A designated 6 month post implementation audit (November 2018 –April 2019) identified 12 people had been diagnosed with an atypical Parkinsonism. Information pre and post implementation of the service improvement was gathered and analysed. The baseline audit identified out of 22 patients only 33% received MDT therapy input with an average (mean) wait to access therapy of 78 days. There was significant variability in wait times and noted impact to perceived effects on QoL (PDQ-39 over 200 responses to ‘always). In comparison, following the service improvement results identified that there was an 89% reduction in waiting time to access therapy, the variation in referral to access MDT went from 156 days to 11 days and of the 12 patients included in the audit 100% received MDT input. PDQ-39 responses for ‘always` fell below 60 indicating less perceived impact to QoL. The changes introduced as part of this workbased project demonstrate the benefits of collaborative working and putting the patient at the centre of everything that we do (WG 2015).

CONTENTS                                             
Acknowledgements                                        3 
Abstract                                            4 
Chapter 1                                           8 
        Introduction                                    8 
        Background                                  13 

• Multiple System Atrophy (MSA) 14
• Progressive Supranuclear Palsy (PSP) 15
• Corticobasal Syndrome (CBS) 16
• Dementia with Lewy Bodies (DLB) 17
Project Aim 20
Objectives 20
Chapter 2 21
Literature review 21
• Integrated MDT input benefits functional ability 29
• Accessing cohesive MDT services improves quality 36
of life (QoL)
Concluding remarks of the Literature review 39
Chapter 3 40
Methodology 40
• Project Trigger 51
• What are we trying o accomplish? AIMS 53
• Driver 1 53
• How will we know if a change is an improvement? 56
MEASUREMENT
• Driver 2 58
• Consideration of the four key parameters 63
• Length of time from first diagnostic outpatient 63
appointment to follow up review
• Was a referral for MDT completed? 64
• Length of time from MDT referral to contact 64

• Quality of life- Review o Parkinson’s disease 64
questionnaire -39 scores (PDQ-39)
• What changes can we make that will result in an 65
improvement? IDEAS
• Driver 3 66
• Consideration of the referral process 66
• Driver 4 67

Chapter 4                                           72 
        Results                                     72 

• Driver 5 – continuation of PDSA cycle 2 72
• PDQ-39 78
Chapter 5 81
Discussion 81
• Driver 6 81
• Analysis 81
• Evaluation of the service improvement 85
Chapter 6 89
Conclusion 89
Recommendations for practice 91
Appendix
Appendix 1- Epidemiology chart 93
Appendix 2 – The four principles of person-centred care 94
Appendix 3 – PRISMA Flow Diagram 95
Appendix 4 – Evaluation of studies in literature review 96
Appendix 5 – Hoehn and Yahr scale 112
Appendix 6 – Unified Parkinson’s Disease Rating Scale 113
Appendix 7 – Scoping exercise 115
Appendix 8 – R&D approval 117
Appendix 9 – Mind Map 120
Appendix 10 – Letter 121
Appendix 11 – PDQ-39 Questionnaire 122
Appendix 12 – Adapted PUKAT (2017) Tracking/audit sheet 124
Glossary 127
References 129

CHAPTER 1
Introduction
Delivering integrated services which are responsive to the individual needs of people with complex neurological conditions is challenging (Welsh Government (WG) 2017). In Wales there are approximately 7,692 people with a diagnosis of a Parkinson’s condition which is set to rise by 18% in the next 6 years (Parkinson’s UK 2018). This increase reflects the escalating aging population where diagnoses of Parkinson’s syndromes are more common. In the context of service delivery growing demand is set to place enormous pressure on current resources (WG 2017). Compounding this is the differing complexity of syndromes under the umbrella of Parkinson’s, with atypical conditions being amongst the most challenging to manage. It has been considered that facilitating affordable integrated services is the way forward (WG 2017). However, there are challenges with ensuring standards of care and prioritising people remain at the forefront (Nursing and Midwifery
Council (NMC) 2018)
Atypical Parkinson’s syndromes are rare degenerative disorders that are rapidly progressive, have little or no response to symptomatic treatment and decreased life expectancy in comparison to Idiopathic Parkinson’s Disease (IPD) (Appendix 1). These relatively unknown conditions which include Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS) and Dementia with Lewy Bodies (DLB) present with a plethora of complex symptoms which require immediate and consistent intervention. In the updated version of the National Institute for Health and Care Excellence (NICE) Parkinson’s guidelines (2017) particular attention is paid to the importance of early multidisciplinary team (MDT) involvement at the point of diagnosis. This requires an integrated cohesive service which according to the All Party Parliamentary Group for Parkinson’s disease (APPG) (2009) in their inquiry into accessing health and social care optimises outcomes and improves standards of practice. People with atypical Parkinson’s syndromes do not fit the traditional outpatient model of care which relies on individualised referral for MDT input rather than structured processes. Inconsistencies and delays in treatment increase the risk of hospital admission, prolonged length of stay and death (Low et al. 2015). There are no guarantees that hospital admission can be avoided but there is evidence that functional ability and quality of life can be enhanced with utilisation of MDT support (Hohler et al. 2012). With one in seven consultations and one in five emergency admissions related to a neurological condition rationalisation of service delivery has become a priority (WG 2017).
Progress is being made in Wales to improve neurological service delivery. Latest figures published in Welsh governments Neurological Conditions Delivery Plan (WG 2017) show a reduction in the length of an individual’s in-patient admission from 6.4 days in 2010-2011 to
4.2 days in 2015-2016. Early indications suggest that service development within neurological rehabilitation with providing high quality diagnosis, treatment, care and the introduction of quality information have attributed to this (WG 2017). Yet inconsistencies remain within outpatient services related to the method of consultation, interval for follow up review and referral for MDT support. With expenditure on neurological conditions having risen by 65% in 5 years (WG 2017) the pressure to deliver cost effective services within current resources has never been greater. However, there are challenges to this. Atypical Parkinson’s syndromes are notoriously difficult to diagnose due to their similarities with idiopathic Parkinson’s in the early stages (Lindop et al. 2014). Additionally their swift progression means there is a very limited window of opportunity to provide effective intervention. Dependent on symptom onset and development the median life expectancy is 3-8 years (Schrag et al. 2008, Ludolph et al. 2009).
Recent results from a national Parkinson’s service audit identify that only 13.5% of Parkinson’s clinics follow an integrated multidisciplinary model. This compares to 58.7% where a more traditional service is in operation inclusive of consultant specialist and Parkinson’s disease nurse specialist (PDNS) only. Disappointingly progress towards integrated MDT services has been slow with only a 1% increase in teams adopting this model over the past 2 years (Parkinson’s UK 2017). Capacity to incorporate this way of working does not appear to be an issue with latest figures from the Welsh NHS Activity and Performance Summery (March/April 2019) showing a downward trend in waiting times accessing therapies (WG 2019). However, there has been a simultaneous fall in therapy referrals for people newly diagnosed with Parkinson’s conditions, continuing variability within clinical practice and delays with accessing both new and follow up appointments possibly contributing to this (Parkinson’s UK 2017). As data was not extracted specifically related to people with atypical syndromes the degree with which these factors impact on their management is unknown. Despite this there are many studies supporting the need for integrated follow up services for people with chronic neurological conditions including the benefits of bespoke services for people with Atypical conditions (Portillo and Cowley 2010, Flabeau et al. 2010, Bukki et al. 2016, Peel et al. 2019).
The focus of this service improvement is to provide an integrated outpatient MDT follow up service for people with atypical Parkinsonism. Patients are reviewed as part of the Parkinson’s and movement disorders clinic during a standard 15 minute time slot. Referral for MDT involvement is based on clinical presentation and individual practice with complex cases discussed at the multidisciplinary meeting (MDM) post clinic. The core team consists of two consultant geriatricians and physicians with an interest in Parkinson’s syndromes and two full time PDNS. Outlying support is provided by two day hospitals with access to MDT input and associate specialist doctor support. In the context of this project MDT will refer to the associate specialist doctor, PDNS x 2, Occupational therapists (OT), Physiotherapists (PT), Speech and Language therapists (SALT), qualified nurses and support staff.
During team meetings increasing concerns have been raised that the current provision of outpatient follow up services were not meeting the needs of people with atypical syndromes. Extended consultations beyond the allocated time slot, inconsistencies in referral to therapies, delays in accessing treatment and variability with follow up appointments were highlighted. As people with these conditions experience a more rapid decline there is a potential risk that the window of opportunity to optimise management under the existing system may be lost. It is also worth considering that progression renders a person less capable of performing tasks due to increasing functional disability. Therefore, the likelihood that patients will be unable to participate in treatment increases with time. Services which lack integration delaying access to support contravene best practice recommendations (NICE 2017, WG 2017). Implementing integrated multidisciplinary follow up for people with complex atypical syndromes has the potential to improve outcomes and quality of life (Lamb et al. 2016).
The author is a Parkinson’s disease nurse specialist (PDNS) working within one university health board (UHB) serving an estimated population of 484,752. The Parkinson’s service is situated within the medical directorate and has a caseload of approximately 1,450 patients diagnosed with a Parkinson’s syndrome. This number does not include people from other specialities within the UHB who are accessing support as they do not have a Parkinson’s specialist nurse team available to them. The PDNS role is multifaceted with a considerable proportion of time being spent working and liaising with the multidisciplinary team and performing complex reviews. Over the past few years numbers within the Parkinson’s clinic have escalated. This increasing demand is placing pressure on meeting targets for new diagnostic consultations and having a direct impact on the time for follow up reviews extending them by up to 3 months. The current clinic allocation for Parkinson’s nurses is 810 patients within a 2.5 hour time slot. Due to the complexity of each review consultation times regularly overrun often by as much as 30 minutes. This tends to occur more typically when assessing patients with atypical Parkinson’s syndromes as a result of their multiple symptoms requiring more detailed analysis. This has a knock on effect to waiting times and patient morale. With outpatient services nationally under considerable pressure to meet the needs of an expanding elderly population, employing strategies that provide effective, efficient and economical use of resources is crucial (The Wales Audit Office Study Team 2018).
This service improvement will show the process by which a change in practice was implemented to manage patients with atypical Parkinson’s syndromes. A fundamental component to this will be the development of an integrated follow up service within a multidisciplinary day hospital setting designed to address and potentially resolve variability and delays to care.

Background
According to the Global Burden of Diseases (GBD), Injuries and Risk Factors study (Global Burden of Diseases (GBD) Study 2015) neurological disorders are the leading cause of disability and death worldwide. In the updated version of the Parkinson’s NICE guidelines (NICE 2017) recommendations place early MDT intervention as fundamental to improved outcomes and maintenance of function. These standards are principle in influencing and transforming practice having derived from a robust systematic review of best available evidence. This concept is even more prevalent when managing atypical Parkinson’s syndromes as drug treatments are less effective in these conditions (Hohler et al. 2012). However, this is challenging due to the individual complexity of each of the syndromes and their more rapid progression.
Atypical Parkinson’s syndromes present with key features which sets them apart from IPD in clinical presentation (Table 1.1).

Table 1. 1 Red flags for identifying Idiopathic and Atypical Parkinsonism syndromes

Idiopathic Parkinson’s Multiple system Progressive supranuclear
disease atrophy1 palsy2 Corticobasal degeneration3 Dementia with Lewy bodies 4
Unilateral onset of symptoms

Presence of slowness of repetitive finger taps with fatigueable decrement

Presence of a resting tremor Presence of unilateral reduced arm swing

Postural instability but usually no falls at diagnosis and in early disease
Good response to levodopa

treatment Symmetrical symptoms, rapid progression
Early falls, often backwards
Disproportionate antecollis
Camptocormia
Autonomic dysfunction
Stridor
Snoring
Involuntary sighing
Emotionally labile Reduced eye movements, especially downwards
Early falls, often backwards
Motor recklessness
‘Mona Lisa’ stare
Positive applause sign
Cognitive changes
Behavioural changes
Emotional lability Reduced coordination/ function in one upper limb
Cognitive dysfunction
Pout reflex
Pallilalia
Echolalia Hallucinations at diagnosis
Fluctuating cognitive changes
Impairment in attention, executive and visuoperceptual function
Parkinsonian features, e.g. tremor, rigidity bradykinesia, shuffling gait, which respond less well to levodopa treatment

Conditions also known as: 1=Shy Drager; olivopontocerebellar atrophy (MSA-C); striatonigral degeneration (MSA-P); 2=Steele-Richardson Olszewski syndrome; 3= Also known as: corticobasal ganglionic degeneration (CBGD); 4=Lewy body dementia; diffuse Lewy body disease; cortical Lewy body disease; senile dementia of Lewy type
(Lindop et al. 2014)
Diagnosis of these conditions is challenging due to the later presentation of the more distinguishing features and overlap in clinical presentation with IPD in the early stages. When red flag symptoms present in conjunction with a lack of response to Levodopa medication it is only at this point atypical Parkinsonism can be considered. Advances in neuroimaging in recent years has resulted in brain Magnetic Resonance Imaging (MRI) scan being used to assist in obtaining a more reliable and accurate diagnosis (Meijer et al. 2017). However, first and foremost MRI is used to exclude cerebrovascular damage but also other possible causes for Parkinsonism that are sometimes treatable such as normal pressure hydrocephalus.
Multiple System Atrophy (MSA)
First reported in 1960 (The Multiple System Atrophy Coalition 2019) the main characteristics of this condition are autonomic failure (orthostatic hypotension, urinary dysfunction, digestive abnormalities). There are two forms MSA-P resulting from degeneration mainly within the basal ganglia thus primary Parkinsonian signs, and MSA-C arising from predominant changes within the cerebellum eliciting cerebellar features. As they are both subject to autonomic changes they are generally catagorised as simply MSA (Lindop et al. 2014). On MRI scan atrophy within the putamen, pons and/or cerebellum can be visualised with a characteristic ‘hot cross bun’ sign supporting the diagnosis (Fig. 1.1). Microscopic presentation of damaged neurons reveals abnormal quantities of the protein alphasynuclein contained within the cell. Despite numerous hypothesis there has thus far been no definitive explanation found as to the cause (Flabeau et al. 2010). Fig.1.1

Subject diagnosed with the cerebellar form of MSA. Left image, T2-weighted transversal sequence demonstrating pontine atrophy with the ‘hot cross bun’ sign (encircled). Middle image, FLAIR hyper-intense signal intensity changes of the middle cerebellar peduncles (arrows). Right image, T1-weighted sagittal plane demonstrating pontocerebellar atrophy.
(Meijer et al. 2017, p214)
Progressive Supranuclear Palsy (PSP)
The initial identification of PSP was by Steele et al. (1964). Distinguishing features of this condition are supranuclear gaze palsy or ‘dolls eye syndrome’ referring to the slowing of vertical saccades with progression to complete vertical gaze paralysis and early falls mainly backwards. As with MSA there is no known cause but speculation exists that environmental, viral or a genetic mutation is responsible (Litvan 2005). MRI imaging reveals atrophy within the midbrain referred to as a ‘hummingbird’ or ‘morning glory’ sign (Fig. 1.2). It has been found that deteriorating brain cells contain neurofibrillary tangles of tau proteins similar to those found in Alzheimer’s disease.
Fig.1.2

T1-weighted images in transversal (left image) and sagittal (middle image) planes demonstrating atrophy of the midbrain also referred to as the ‘morning glory’ sign and ‘hummingbird’ sign. The subject was diagnosed with PSP. Right image, T1weighted sagittal plane of a healthy subject for comparison.
(Meijer et al. 2017, p214)
Corticobasal Syndrome (CBS)
This is the rarest of all the atypical disorders having first been recognised by Rebeiz et al.
(1968). It has the same characteristics as PSP but is distinguishable by the presentation of ‘alien limb syndrome’. This refers to the uncontrollable way an upper limb behaves which is perceived as foreign to the person (Tiwari and Amar 2008). As with PSP tauopathy associated with the aggregation of tau protein into neurofibrillary tangles within neurones results in atrophy. The structures affected are the cortex and basal ganglia with MRI imaging revealing atrophy within the frontoparietal cortical area (Fig. 1.3).

Fig. 1.3

Corticobasal degeneration -mild frontal atrophy with some asymmetry
(Tokumaru et al. 2009)
Dementia with Lewy Bodies (DLB)
The second most common form of dementia after Alzheimer’s it falls under the umbrella of atypical syndromes due to its similar pathology and clinical presentation with IPD. Both involve the presence of intra-cytoplasmic inclusions (Lewy bodies) in the nuclei of neurones formed from the protein alpha-synuclein (Schulz-Schaeffer 2010). In IPD these inclusions tend to be concentrated within the substantia nigra whereas in DLB they are more widely distributed involving both the substantia nigra and deep cortical layers. The distinguishing clinical features which set it apart from IPD are early cognitive impairment and repeated frank visual hallucinations (McKeith et al. 2005). Radiological imaging with dopamine transporter (DaT-scan) is only used for the differential diagnosis of Alzheimer’s (no changes) and DLB where loss of dopaminergic neurones is identified (Fig. 1.4) (Bhogal et al. 2013).

Fig. 1.4

Normal DaT scan (a) for comparison. DaT scan of a patient with DLB (b) showing lack of tracer uptake in the putamen bilaterally.
(Bhogal et al. 2013)
The complexity of diagnosis in conjunction with the array of different symptoms between the atypical syndromes presents a variety of challenges with management. Current outpatient services for Parkinson’s have been designed to cater for general rather than specific need. This is not ideal considering the trajectory and lack of effective treatment available. Improving outpatient services is an initiative gaining momentum in Wales. Transforming the current system in a direction that addresses need where appropriate is considered prudent to sustainability in the long term (NHS Wales “1000 Lives” Improvement 2014). Focus has been set on tackling six key domains to guide good practice including:
• Patient safety
• Provision of clinically effective services
• Services centred on patients
• Services provided in a timely way
• Efficient provision of services

• Equitable care
This change in direction guided by the “1000 Lives” campaign (2014) does present challenges particularly when addressing the needs of people with rare complex conditions who do not fit a standard model of care. However, onus is being placed on practitioners to develop shared decision making and build close personal relationships together and with their patients. According to The Health Foundation (2015) changing practice would not be possible unless underpinned by core principles of patient centred care (Appendix 2). This is a move away from traditional models which have generally taken a reactive approach (NHS Wales “1000 Lives” Improvement 2014).
People with atypical disorders require timely multifaceted intervention which takes into account the complexity and variability of their symptoms. Advanced care planning is crucial to this (Lamb et al. 2016). However, as these conditions are rapidly progressive this requires prompt action, patience and sensitive discussion which is often outside the scope of an outpatient interaction. Communicating preferences and care wishes is a key component to this process with time allocated to consider resuscitation status, hospital admission and feeding (Lindop et al. 2014). With time constraints in clinic valuable information and educational opportunities can be missed. Inconsistencies in clinical management pose the risk of referral to specialist hospital services such as palliative care and third sector support being omitted. As there are no clinically effective drug treatments currently available it is essential the services for these complex conditions employ alternative strategies to maintain quality of life (Lamb et al. 2016).

Project Aim
To develop an integrated multidisciplinary follow up service for people with atypical Parkinsonism within a day hospital setting to address and potentially resolve variability and delays to care.
Objectives
• To review the literature exploring the benefits and challenges of integrated multidisciplinary team working with managing patients who have complex chronic conditions.
• To collect baseline data regarding current outpatient clinic services.
• Implement the service improvement to provide an integrated MDT follow-up service for people with atypical Parkinson’s syndromes.
• Outcome measures to evaluate benefits with the service improvement in reducing waiting times for follow up review, more timely and consistent access to MDT input and impact on quality of life using:

  1. Parkinson’s UK Audit Tool (2017) (adapted)
  2. Parkinson’s disease questionnaire-39 (PDQ-39) (Jenkinson et al. 1997)
  3. Hoehn and Yahr (1967) Parkinson’s stages of disease
  4. Run charts
    • Put forward recommendations to reinforce future practice in terms of sustainability of the service.

Chapter 2
Literature review
This chapter details the process of a literature review which was conducted to investigate articles pertinent to the management of people with atypical Parkinson’s conditions. Literature review serves to explore, increase understanding, contextualise what is already known and identify the most recent evidence based material available (Parahoo 2014). A systematic approach to the search strategy critically analysed background information to support practice in developing, evaluating and implementing quality service improvement (Gerrish and Lathlean 2015).
Appraisal of the literature was carried out to establish validity and reliability of the studies followed by a process of data extraction to select articles for inclusion in the analysis. In advance of this, a planned search strategy was utilised involving the development of a focused question. According to Gerrish and Lathlean (2015) this ensures the search is suitably streamlined, accuracy is maintained and volume of literature retrieved is controllable. The PICO (Patient/Problem/Population, Intervention,
Comparison/Control/Comparator and Outcome) or SPICE (setting, Perspective, Intervention, Comparison and Evaluation) models can be used to assist with this process of formulating the focused question by identify key words and phrases for the search (Table 2.1). Gerrish and Lathlean (2015) deem the PICO model a preferred format for questions surrounding healthcare interventions as opposed to SPICE which is preferred for qualitative approaches. PICO is deemed the preferred model for this service improvement as it takes a more interventional approach.

Table 2.1 PICO MODEL Identified words and phrases
Patient/Problem/Population Atypical Parkinson’s/Parkinsonism
Parkinson’s Plus Syndromes
MSA
PSP
CBD
DLB
Movement disorders
Neurodegenerative diseases
Intervention Multidisciplinary Team Intervention
Rehabilitation
Integration of healthcare
Holistic management
Treatment
Palliative care
Comparison/Control/Comparator Current Outpatient services
Outcome More timely intervention

Having generated key search words using the PICO model these were employed as a basis for a rigorous search of multiple acknowledged databases. Gerrish and Lathlean (2015) recognise that by applying this method a more thorough return of results can be achieved. The electronic databases used were the Cumulative Index to Nursing and Allied Health
(CINAHL), The British Nursing Index (BNI), MEDLINE, Web of Science, Scopus and Turning Research into Practice (TRIP). Boolean operators AND, OR and truncation * streamlined the search combining and excluding terms for increased accuracy of results retrieved. According to Parahoo (2014) this process reduces the risk of missing relevant articles and ensures literature retrived is as broad as possible.
Inclusion and exclusion criteria have been set (Table 2.2) to establish boundaries and focus the search, which according to Parahoo (2014) improves the generalisability of the findings.

Table 2.2
Inclusion Exclusion
• English language articles
• Peer reviewed
• Adult
• Systematic reviews
• Meta-analysis
• Atypical Parkinson’s
• Parkinsonism
• Parkinson’s plus
• MSA,PSP,CBD
• Parkinson’s disease
• Complex Parkinson’s
• Individual and group interventions
• Multidisciplinary team (MDT) input
• Integrated
• Similar healthcare approaches • Hospital or hub based settings
• Methods of service improvement/change
• Outpatient services
• Neurological conditions
• Chronic disease-neurological base
• Rehabilitation
• Palliative care
• Open time frame (consideration to seminal literature) • Children
• Non intervention literature (based on telephone, internet, video interaction)
• Commentary based articles
• Home based intervention
• Surgical/post operative rehabilitation
• Drug induced/vascular Parkinsonism
• Primary care based services
• Individual therapies
• Non-neurological chronic diseaseDiabetes, epilepsy, respiratory, heart disease

An initial search of the databases identified a limited number of articles specifically related to integrated/multidisciplinary input of people with atypical syndromes. As care forms part of a Parkinson’s service as a whole broadening the search to include all Parkinson’s related conditions and neurodegenerative disorders resulted in more comprehensive retrieval of literature. Many of the studies did not distinguish the syndromes as separate and thus they were included under the umbrella term of Parkinson’s or Parkinsonism. In respect of integrated/multidisciplinary/rehabilitation there was differing opinion in the literature regarding what therapies constituted the makeup of a service. In terms of this project variation in service provision and location was used to enhance the review and broaden the evidence base. Studies which involved home based intervention alone were excluded. However, literature where home based intervention formed part of an outpatient or hospital based service were included as links between intervention and outcome added context to the analysis. One study by Rooney et al. (2015) which was initially excluded as it involved people with Amyotrophic lateral Sclerosis (ALS) on further analysis was included as comparisons could be drawn in care provision which added insight into service delivery.
Additional hand searching of articles was carried out using relevant journals content pages. According to Aveyard (2012) this process can capture studies that may have been missed via the electronic search. Further literature was sourced where relevant articles were back chained using reference lists (Parahoo 2014). Following a comprehensive search the retrieved literature was scrutinised based on the inclusion criteria to identify relevant information and selected for the literature review (Table 2.3). Explanation of the explicit selection process has been captured using a PRISM (Preferred Reporting Items for Systematic Reviews flowchart (PRISMA 2015) (Appendix 3). Seminal articles were identified which were analysed within the systematic reviews (Gage and Storey 2004, Johnston and Chu, 2010, Prizer and Browner, 2012, Tan et al.2014). Despite being small studies they were included as being pivotal in identifying an interrelationship between integrated intervention and positive patient outcomes.

Table 2.3 Search results
Databases Number of Hits Articles Retrieved Relevant studies
Cumulative Index of Nursing and
Allied Health (CINAHL)

British Nursing Index (BNI)

MEDLINE

Web of Science

Scopus

Turning Research Into Practice (TRIP)
122

83

56

41

10

3
21

12

10

6

2

1
5

3

2

2

0

1

Additional searches (other sources) 23 8 2

The total number of articles that were finally retrieved amounted to fifteen and was deemed to provide evidence relevant to the project. The literature was comprised mainly of quantitative studies including randomised controlled trials (RCTs) which are considered the ‘gold standard’ of evidence (Parahoo 2014). Booth (2010) rejects the concept of applying rank or hierarchy to studies in favour of the method being appropriate to the question to be answered. This is however not the consensus of opinion. Murad et al. (2016) recognise that applying hierarchies of evidence allows for key markers to be identified in terms of quality and underpinning theory which is an integral part of appraising research evidence. Trials of this nature are deemed to employ rigorous approaches through their methods of data collection and numerical reporting (Polit and Beck 2018). RCTs can also act as a springboard to further investigation. The approach utilised within RCTs employs the use of comparative data generally looking at like groups being exposed to different stimuli (Parahoo 2014). As this project is based on current outpatient provision verses the introduction of multidisciplinary follow-up, inclusion of these trials was deemed to provide a strong evidence base.
One of the retrieved studies by Frundt et al. (2018) is based on a service improvement which employs practice observation as a means of gathering quantitative data. Previously considered as less robust (Parahoo 2014) more recently there is increased understanding that service improvement methods have impact in enhancing the efficiency of healthcare delivery (Goldstein et al. 2018). Consistent in its use of both subjective and objective data collection Frundt et al. (2018) employed recognised Parkinson’s motor and non motor tools. Utilisation of the same data collection instruments to a greater or lesser degree was seen throughout the quantitative literature retrieved. With this being the case there is a greater opportunity for generalisability of results which according to Parahoo (2014) can be an indicator of more robust methodology.
Qualitative studies were less prevalent within the search with only one being identified for inclusion in the literature review. Historically evidence retrieved through these methods has been considered less significant (Dharamsi and Charles 2011). However, this opinion is outdated with acceptance now that they add depth, context, understanding and holism by exploring thoughts, experiences and behaviour (Polit and Beck 2018). The psychological context of care is important when managing people with atypical syndromes. The study by Murdock et al. (2015) has been discussed to highlight the interrelationship between the physical benefits of MDT input and perceived benefits to quality of life. Whilst its focus is on people with advanced Parkinson’s comparisons can be drawn as these conditions overlap in complexity and impact to emotional and physical aspects of daily life.

The studies included within this review are a spread of United Kingdom, European and International literature. This highlights that there are potential issues globally with care for people with Parkinson’s and atypical syndromes and that this is not just a product of our healthcare system. Integrated multidisciplinary healthcare is open to interpretation with inconsistencies in service provision and models of care continuing to exist (Post et al. 2011).
However, studies which provide clear explanations of what represents service delivery
(Hohler et al. 2012, Monticone et al. 2015, Frundt et al. 2018) can be more easily replicated. This is an important consideration when interpreting the results, as reliability is dependent on being able to reproduce the research in order to draw comparisons (Parahoo 2014). It also allows improved transparency when reviewing the literature and analysing the results.
Review of the chosen literature has been carried out using a systematic approach analysing for reliability, validity and rigour. This process of examination is used to determine the trustworthiness, value and relevance of the study whilst questioning its applicability within a particular context (Gerrish and Lathlean 2015). Critical appraisal tools provide a means of guiding this process by way of checklists or frameworks which evaluate the quality of the research (Parahoo 2014). Numerous tools are available which according to Buccheri and
Sharifi (2017) require careful navigation in order to select the most appropriate for the job. This literature review utilises the Critical Appraisal Skills Programme (CASP 2018) checklists which provides a framework for evaluation of published studies. This comprehensive framework offers tools for use with various methodologies appointing questions to guide critical thinking for appraisal. According to Whiffin and Hasselder (2013), this procedure allows more objective and analytical evaluation of evidence and improves critical thinking.
The Specialist Unit for Review Evidence (SURE) checklist was considered but was discounted on the basis that the majority of literature retrieved was quantitative therefore suiting the format approached through CASP (2018). On completion of this process the information was entered into a table (Appendix 4) which enabled further scrutiny and to facilitate the extraction of commonalities and identify voids in practice. A comprehensive critical analysis having been directed by CASP identified key themes which were extrapolated and will be used to guide the literature review which are:
• Integrated MDT input benefits functional ability
• Accessing cohesive MDT services improves quality of life
As stated earlier the lack of studies pertinent to atypical Parkinson’s syndromes reflects that there is a discrepancy in considering that these conditions are unique. Globally there is a tendency to deliver care symbiotically under the umbrella of Parkinson’s as these atypical disorders are so rare. However, rapid progression and lack of response to treatment do set them apart (Hohler et al. 2012). Despite this there are similarities in care provision between Parkinson’s syndromes as a consequence of overlap in developing symptoms. As a result studies did not tend to distinguish between conditions but instead focused on provision of MDT input and structure of follow up as a whole. As this is an integral component of this local workbased project, articles related to this were considered relevant for inclusion and also provided further depth to the analysis.
What follows is an examination of the literature in the main pertaining to multidisciplinary input and integrated care of people across the spectrum of Parkinson’s syndromes. The paucity of studies which relate directly to atypical conditions suggests they are considered to have less gravitas. As a potential secondary outcome and unintended consequence, this project may be beneficial in exploring care provision which to a degree has been missed.

Integrated MDT input benefits functional ability
Throughout the literature it is evident that there is no clear standard of what constitutes integrated multidisciplinary care. Marck et al. (2013) in their study viewed this concept as the introduction of movement disorders specialist, PD specialist nurse and PD social worker as an alternative to stand-alone care by a neurologist. Hohler et al. (2012) however, have a broader perspective combining multiple therapists with a traditional specialist consultant and PD nurse model as their representation of multidisciplinary. On the whole inclusion of therapists was seen as an integral part of integrated care and as such was represented within the majority of studies.
Systematic reviews provide a rigorous summary of primary research studies as a means to answer a specific question (Parahoo 2014). Three articles from the review employed this method to discuss integrated MDT care in relation to Parkinson’s syndromes. Prizer and Browner (2012) despite a robust search process were limited to finding two articles which looked directly at the effectiveness of integrated MDT care in the context of Parkinson’s management. Their rationale for limiting the search by focusing directly in this area was to highlight gaps in order to determine potential next steps in research and development of best practice for PD. In earlier studies by Gage and Storey (2004) and Johnston and Chu (2010) where they opened up their search to looking at rehabilitation as a whole, there was again limited retrieval of evidence that specifically related to integrated care and Parkinson’s /Parkinsonism. All three studies noted gravitation towards improvement in all outcome measures with the implementation of MDT input. A seminal piece by Szekely et al.
(1982) was included in the earlier reviews but was notably discounted by Prizer and
Browner (2012) possibly due to it not being a truly integrated model (only included a physiotherapist and nurse psychologist) , low rate of participants (n=7) and no follow up data. An outpatient MDT model by Trend et al. (2002) was included in all three reviews being recognised as having a more reliable and valid research strategy. This is the first piece of robust work (n=118) that explored the relationship between integrated MDT care (inclusion of multiple therapies) having a positive impact on physical and psychological function in PD. All three studies recognised limitations in quality of evidence and inconsistencies in the concept of an MDT model. Interestingly Prizer and Browner (2012) in their later study continue to acknowledge the need for further research as a consequence of a continued paucity and lack of robust evidence available. As a result of the literature search it appears that certainly in the last few years increasing evidence is becoming available in this area possibly as a result of more robust guidelines being made available (NICE 2017).
There is recognition that multidisciplinary input is beneficial in managing Parkinson’s across the whole spectrum of syndromes as a part of follow up management (NICE 2017). Atypical Parkinson’s has been somewhat neglected with more robust evidence needed to support this concept. In a study by Hohler et al. (2012) this link is explored using a pretest-posttest design to investigate the effectiveness of an MDT program on improving functional status. A convenience sample of participants (n=91) was used encompassing a wide range of atypical syndromes (25 vascular PD, 19 MSA, 4 PSP, 43 combination CBD, DLB, drug/toxin induced). This form of sampling has limitations for replication and potential generalisability to other areas as a result of using an easily available sample which may not be representative within a wider context (Parahoo 2014). However, longitudinal data collection (over 4.5 years) capitalised on obtaining a representative cohort and demographic for inclusion thus improving rigour. Hoehn and Yahr (1967) classification of staging was used to identify severity of disease (Appendix 5). Updated by the Movement Disorders Task Force (Goetz et al 2004) this universally recognised system describes Parkinson’s progression in a simple format that can be used by any professional. Participants were categorised as stage 3-5 thus identifying them as moderate/complex phase disease.
Findings from the study showed improvements in outcome measures across all five motor scores (for example 2 minute walk test increased from 138.9ft to 202.5ft). The majority of participants (n=81) where measured based on a combination of medication adjustments and MDT input with the remaining cohort (n=10) assessed on MDT input alone. Consistency was maintained using the same therapists to deliver interventions, record outcome measures whilst applying the same validated tools thus aiming to improve inter-rater reliability (Waltz et al. 2010). The MDT in-patient program was intense (3 hourly sessions, 5/7 days a week for an average of 2.5 weeks) and as such it could be questioned as to whether this level of intensity and contact played a part in any improvement. Further limitations include lack of a control group and follow up data which may potentially reduce the reliability of the study. However, it is worth noting that confidence intervals were narrow (95% (28.4 to 32.5) for functional Independence Measure (FIM) disability score and 95% (-20.6 to -28.2) for Timed Up and Go (TUG) which suggests a degree of validity.
Monticone et al. (2015) utilised a similar in-patient approach in their RCT to identify a correlation between integrated MDT input and improved functional outcomes in people with complex PD (defined as Hoehn and Yahr stage 2.5-4). The programme used a combination of 30 and 90 minute MDT interventions which were spaced over an 8 week period. Improvements were noted in terms of motor function, activities of daily living (ADL) and QoL. A 51% increase in Berg Balance Scores (BBS) which is used to assess falls risk was seen in the experimental group compared to an unclear trend being noted in the control (BBS improved in 20% with 17% showing a decline). This identified an overall reduction in falls risk within the experimental group. Improvement was maintained 1 year post treatment which was attributed to higher rates of satisfaction facilitating adherence to the programme at home. Another major contributor was education and psychologist support which was delivered consistently to the intervention group. This was seen as an integral component within the programme in maintaining motivation as improvement in motor Unified Parkinson’s Disease Rating Scores (UPDRS) (Appendix 6) (range 0-132 with zero signifying a high level of function) was identified at follow up assessment (Post training UPDRS 40.8 and 1yr review 37.3). This occurred despite participants admitting that they had modified the program towards a more streamlined version, although it is worth considering that this may have skewed the results. It is also worth noting that medication compliance was more stringently monitored during the study and may well have contributed to functional improvement. There are also issues pertaining to sustainability as the cost of the programme amounted to 20,000 Euros funded by the Italian Healthcare system. It is recognised that this does limit its transferability to other systems particularly those where admission is only considered following an acute event (Monticone et al. 2015).
Similarly to previous studies, Traistaru et al. (2017) in their small RCT (n=27) utilised a complex programme of MDT input using aerobic exercise to identify if functional ability and quality of life could be improved using validated tools for assessment. This was delivered over a 6 week period but unlike the previous studies took place within an outpatient rehabilitation setting and involved people solely with a diagnosis of vascular Parkinsonism. As with Monticone et al. (2015) there were important links made regarding the role of education in training as being integral to the process. In the intervention group significant differences were seen in all studied parameters from baseline with the highest level of significance noted in BBS (P=0.0001) and TUG (P=0.0009). Having a robust multidisciplinary team set up in place that could provide visual and auditory prompts (cueing) as needed was identified as a factor for this improvement. Quality of life was noted to have enhanced but as this was based solely on ability to perform ADL its significance in respect of psychological wellbeing is unknown. Follow up progress was not reported despite an intervention programme being supplied to be continued at home therefore, long term outcomes could not be assessed.
In contrast, Marck et al. (2013) in their study had a different view of what constitutes MDT input. They utilised what is often considered to be a regular Parkinson’s service (PDNS, movement disorders specialist) plus social worker to compare with stand alone treatment by a neurologist. As there were no therapists included within the study outcome measures to assess effectiveness utilised specific Parkinson’s based tools including the UPDRS part III (motor section) and Parkinson’s disease questionnaire (PDQ-39). These are validated assessments used globally within the field of Parkinson’s. The UPDRS was originally developed by Fahn and Elton (1987) for use as a clinical assessment tool bespoke to Parkinson’s and is comprised of a 50 question assessment of both motor and non-motor function. This has undergone a sponsored revision by the Movement Disorders society (Goetz et al. 2008) and deemed valid for continued use. There are four sections to its structure; non-motor experiences of daily living, motor experiences to daily living, motor examination and motor complications. These can be used interchangeably or stand alone. The PDQ-39 is again a widely used evidence-based tool which assesses how people with Parkinson’s experience difficulties across eight dimensions of daily living including; mobility, ADL, emotional well-being, stigma, social support, cognitions, communication and bodily discomfort (Jenkinson et al. 1997). These tools can be applied to all patients with Parkinson’s or Parkinsonism regardless of disease trajectory.
Despite a lack of therapy input Marck et al. (2013) identified improvements within the intervention group with a 3.4 point improvement in PDQ-39 and 4 point improvement in
UPDRS part III. It was noted that the most significant increase in interactions was with the Parkinson’s nurses (86%) compared with the social worker (69%) and specialist (59%). The majority of interactions with the nurse were via the telephone. This seems to suggest that there is a relationship between functional improvement and increased access to professionals for advice and support. Unfortunately this was not explored further with no evidence presented regarding the nature of the calls or interactions. Also it needs to be considered that the majority of participants were in the earlier stages of disease making it unclear if this MDT structure would transpose to people with more complexity that may require increased face to face interaction. Further deliberation should also be given as to whether this can be considered an MDT or is in fact a team approach. It is generally considered that MDT refers to the integration of multiple therapies and that an important component of this is physical interaction. This is supported by Gage and Storey (2004), Johnston and Chu (2010) and Prizer and Browner (2012) in their systematic reviews where studies involving integrated MDT input all included the involvement of physiotherapy and occupational therapy as a minimum. Therefore it is difficult to view this study in the context of integrated MDT care however, it is significant in establishing the influence that increased interaction and engagement has on improving motor function and ADLs.
Within the past few years research related to atypical syndromes and the benefits of integrated MDT models for follow up management have escalated. Since 2016 three studies were found that were directly focused on or included as part of the study atypical conditions
(Bukki et al. 2016, Clerici et al. 2017, Frundt et al. 2018). However, similar to Hohler et al. (2012) both Bukki et al. (2016) and Clerici et al. (2017) utilise an in-patient programme to deliver MDT follow up which has been recognised can be costly (Monticone et al. 2015). In all three studies participant numbers were low (range 5-38) although this does reflect the rarity of these conditions in the wider context of Parkinson’s syndromes. It is interesting to note the predominant conditions studied were PSP and CBD despite MSA and DLB being more common. Bukki et al. (2016) in their palliative care MDT model noted 68% of participants stabilised or improved following intervention with 47% able to be discharged without carer support. Similar functional improvements were seen by Clerici et al. (2017) noting that direct MDT involvement positively impacts on gait and limb efficiency resulting in a reduction in falls. In the most recent study by Frundt et al. (2018) an outpatient clinic model proved to be just as beneficial as in-patient intervention but with the added bonus that it was less costly. Furthermore, as treatments were being delivered under real-life conditions with participants being exposed to their daily routine whilst having intervention, this allowed more time for fine tuning and evaluation increasing the efficiency of interventions. This approach has also been used for the management of ALS with Rooney et al. (2015) noting marked improvements in survival benefits (p <0.001) with MDT intervention clinics and clinical outcomes. This large retrospective study (n=719) using data from the ALS registers over a 6 year period, compared two healthcare systems in the Republic of Ireland (ROI) and Northern Ireland (NI) which employed different strategies for managing people with ALS. The ROI system which used a centralised MDT outpatient approach showed the most marked benefits in comparison to the NI system which used care coordinator alone. However, as this study focused on survival rates there was no exact determination as to the precise advantages of MDT input. It was also noted the ROI group were younger onset which may have skewed the results. Validity and reliability can also be questioned in terms of lack of control group and being unable to determine if extraneous factors influenced the findings. It is worth considering that in the context of complex neurological disease management clinics which boarder in-patient and out-patient MDT models seem to be gaining momentum.
Although there are methodological limitations throughout these studies especially in relation to sample size and what constitutes the makeup of an MDT model, there are features which can be pertained to this project. It seems integrated models are the way forward however further research in relation to atypical/complex Parkinson’s syndromes is required.
Accessing cohesive MDT services improves quality of life (QoL)
An integral part of this project is focused on integrated care models for follow up management having the best outcomes for people with atypical Parkinson’s syndromes in comparison to current outpatient provision. However, an addendum to this and a theme not greatly addressed in the previous studies but eluded to is improved QoL. Five of the studies within this review identified a direct relationship between MDT integrated care and perceived well-being.
Ferrazzoli et al. (2018) explored the effect of four week in-patient aerobic, motor-cognitive integrated MDT intervention on QoL using the PDQ-39 questionnaire. The most significant improvements (p<0.0001) were seen in emotional well-being and cognition. However, interestingly there was no change from enrolment or between intervention and control in regard to awareness of stigma (p=0.21). Consideration was given to this particularly as the concept of stigma encompasses feelings of shame, embarrassment and disgrace which is likely to impact on QoL (Cacioppo et al. 2015). It was felt that even though this variable had been unresponsive to treatment in itself it did not impact on feelings of well-being even at three month follow up. It is interesting to note that there was a large discrepancy in numbers between contol (n=48) and intervention (n=200) groups with a further limitation in respect of the lack of blinding of the neurologist and physiotherapist who performed the analysis. This calls into question the reliability and generalisability of this study however, demographic data on comparison did not show any statistical significance.
Similarly Eggers et al. (2018) saw improvements in PDQ-39 scores although the makeup of the MDT only consisted of neurologist, PD nurse and movement disorders specialists with therapies utilised on the perimeter as support. Unlike Farrazzoli et al. (2018) all domains including stigma showed significant improvements suggesting participants felt empowered in relation to disease acceptance and coping. This is possibly due to a more balanced randomisation (n=150 control and intervention) and outpatient design which as previously identified has a more realistic approach.
It is of interest that a systematic review by Tan et al. (2014) predating the studies by Ferrazzoli et al. (2018) and Eggers et al. (2018) found the evidence to be inconclusive in respect of MDT intervention having a positive effect on QoL. Comparable with other systematic reviews within this analysis evidence retrieved was scant with only nine studies included. It is worth noting that all nine articles were focused on MDT intervention with QoL being an addendum to this. Trend et al. (2002) again features for its inclusion of the Hospital Anxiety and Depression scale (HADS) developed by Zigmond and Snaith (1983) which is used to gauge emotional health. Universally recognised not just for Parkinson’s
HADS does provide a snapshot into an individual’s well-being and as such is often linked to QoL. As the Tan et al. (2014) study predates more recent research which has focused directly on QoL in relationship to MDT input in Parkinson’s it is perhaps unsurprising that findings were inconclusive. As recommendations suggested further research was needed which appears to be emerging.
In order to gain an understanding of the impact on QoL of being engaged in MDT interventions a qualitative study by Murdock et al. (2015) used interviews to explore meaning behind being involved in therapy. Themes that emerged were in the main related to emotional and psychological benefits as a result of being engaged in therapies which provided the opportunity for social interaction. Participants felt that being involved in MDT interventions improved their overall well-being which in turn had a positive impact on perceived QoL. It was noted that it was not so much the act of participation but rather the group interaction and peer support which were of greater significance. Validity can be questioned as this was a purposive sample recruited as a result of belonging to Parkinson’s UK the charity. These limitations impact on reliability of the results as participants were not representative of a wider population as a consequence of their involvement in an organisation which may have exerted an influence on the results.
The impact of QoL on functionally ability is being increasingly considered as essential in health care. It is believed that when measuring functional ability that QoL should be viewed in tandem to this, as together they provide different yet complimentary information that can assist clinicians in decision making and assessment (Post 2014).There continues to be disagreement in the exact definition of what constitutes QoL. Despite this consensus of opinion is that any measure of healthcare should consider social, psychological, mental and functional parameters if it is to be considered reliable (Whitehurst et al. 2012).
Concluding remarks of the Literature Review
In summary there is a paucity of literature which is specifically related to the management of atypical syndromes and what is available is generally methodologically flawed providing a weak evidence base. A recurring theme throughout all the studies is the need for further research not only in relation to best practice in management of atypical syndromes but also across all spheres of Parkinson’s. A significant discrepancy amongst all the studies is a lack of standardisation regarding what constitutes a multidisciplinary team and utilisation of a variety of different outcome measures. This makes it challenging to draw comparisons between studies and identify the merits of the interventions.
Despite a limited availability of credible evidence related to atypical Parkinson’s syndromes it was generally considered that integrated MDT models are beneficial to both functional ability and QoL across all Parkinson’s conditions. Interestingly outpatient models reaped the same rewards as in-patient models with the added bonus that they were less costly. There was also consideration that education and training assist in maintaining motivation and participation. An integrated MDT outpatient model has been identified as prudent strategy to address the project aim of providing improved follow up for people with atypical Parkinson’s syndromes. It is anticipated that by utilising this approach outcomes for both functional and QoL will improve.
Chapter 3
Methodology
It has been established that people with atypical forms of Parkinson’s have complex multidimensional needs which require a different management approach not presently served through current out-patient services (Chapter 2). The paucity of literature pertaining to this group of patients is reflective of services which treat all Parkinson’s conditions collectively regardless of trajectory or treatment (Hohler et al. 2012). As stated the aim of this service improvement is to develop an integrated multidisciplinary follow up service for people with atypical Parkinsonism within a day hospital setting to address and potentially resolve variability and delays to care.
Guidelines are explicit in emphasising the importance of collaborative working (NICE 2017,
WG 2017) underpinned by a patient-centred approach. This concept was envisioned by Welsh government in their document ‘Health and Care Standards(WG 2015) which structures the provision of high quality, safe and reliable care with the person at its core (Fig. 3.1). The frameworks seven quality themes are intended to work collectively fostering a culture of integrated care focused on the person, their family and holistic needs. Fig.3.1 (WG 2015 p.7) As highlighted in chapter 1 Parkinson’s services have been slow in adopting integrated approaches to follow up care ( Parkinson’s UK 2017) which as identified in the literature review is an essential component when managing people with Parkinson’s syndromes (Bukki et al. 2016, Clerici et al. 2017, Frundt et al. 2018). The current system is not only failing to meet national guidelines (NICE 2017) but the vision of the Welsh Government to provide coproductive services, pooling expertise to deliver effective and sustainable outcomes for an improved user experience (WG 2015). This project has the capacity to achieve this. Firstly, utilising the availability of an established multidisciplinary set up, which in this case is via day hospital services, ensures the ethos of co-productive working is already in place. Secondly, by employing staff who already have knowledge and expertise with Parkinson’s syndromes working within this environment, the project is helping to maximise current available resources and ensure the provision of care is evidence-based. Thirdly, providing follow-up as part of an integrated structure resolves fragmented referrals for MDT input resulting in more timely intervention which is an integral component when providing care for people with these rapidly progressive conditions (NICE 2017). Finally, utilising a service where geographical boundaries do not exist ensures equality of care particularly when patient numbers are small and there is a risk with sustainability. It is worth noting that patient-centred care is dependent on robust governance, leadership and accountability being in place to underpin the delivery of high quality safe care (WG 2015). As the service improvement lead the PDNS role has provided the underpinning knowledge, skills and expertise which is required to co-ordinate complex decisions and drive the implementation process forward (National Leadership and Innovation Agency for Healthcare (NLIAH) 2010). These qualities are an integral part of any advanced practice role and when being viewed in the capacity of leader and valuable resource (NLIAH 2010). It is also worth considering that as this project is based within an already established service leadership currently exists and as such will require careful cooperation and refining to work in conjunction with the new service. Quality improvement is a core principle in the NHS and a key driver of services. Since the inception of the concept of quality in the government white paper ‘The new NHS: modern. Dependable (Department of Health (DOH) 1997) the term clinical governance has become synonymous with provision of high standards of care. Embedded within the culture of delivering current and future services Welsh government has continued to produce key documents (Together for Health (WG) 2011, Achieving Excellence: The Quality Delivery Plan for the NHS in Wales 2012-2016 (WG) 2012, Safe Care, Compassionate Care (WG) 2013) which lay the foundations for redesign of services with quality at the very core. The values which inspire this vision comprise of:

• Putting quality and safety above all else: providing high value evidence based care for our patients at all times
• Integrating improvement into everyday working and eliminating harm, variation and waste
• Focusing on prevention, health improvement and inequality as key to sustainable development, wellness and wellbeing for future generations of the people of Wales
• Working in true partnerships with partners and organisations and with our staff
• Investing in our staff through training and development, enabling them to influence decisions and providing them with the tools, systems and environment to work safely and effectively
(WG 2013 p.7)
An integral component to the delivery of this is staff taking ownership and being engaged with the process. Initiatives have been put in place including “1000 lives plus” and “Fundamentals of Care” to continually encourage staff to remain focussed on maintaining standards. Supported by Welsh government “Doing well, Doing better” (WAG 2010) outlined that improving clinical quality and patient experience is directly dependant on change being initiated and embraced at grass roots level. Primarily the goal for organisations is to assess that they are “doing the right thing, in the right way, in the right place, at the right time and with the right staff” (WG 2013 p.8). This is central to quality improvement and driving reductions in harm, waste and variation which this project directly links to.
In “doing the right thing” the traditional model of outpatient follow-up will be replaced by an integrated multidisciplinary service which as identified in the literature review (chapter 2) is key. Importantly time is of the essence when managing people with atypical Parkinson’s syndromes (Hohler et al. 2012). Utilising multiple therapies within one location is a more efficient use of resources addressing waste and variation in referral and time to treatment that current services are restricted to. Furthermore, the absence of structured follow-up means patients can slip through the net and become lost in the system increasing the risk of harm as symptoms will not be effectively managed.
The literature review identified that cohesive, integrated services provided the best outcomes for people with atypical Parkinson’s ensuring care is delivered “in the right way”. This system not only addresses variation in referral for treatment by establishing a single point of access for MDT, but helps to facilitate staff delivering care have the knowledge and skills pertinent to managing these rare syndromes. This is an important factor in patient safety and reducing the risk of harm. As education and training are integral components to the delivery of care and emergent themes throughout the literature it is pertinent that staff are in possession of evidence based skills. It not only fosters improved standards of care but contributes to nurses fulfilling their professional obligation to maintain quality by drawing on the best evidence available to inform their practice and apply their skills effectively (NMC 2018). This is an important consideration as maintaining quality standards are dependent on having “the right staff” for the job. Supporting professional development in this way can provide the opportunity for staff retention and sustainability of services over the longer term.
It is perhaps the final two components “the right place” and “the right time” that completes the loop for quality standards to be achieved according to WG (2013) but importantly is integral to the success of this project. These rapidly progressive conditions have a limited window for intervention in comparison to other Parkinson’s conditions (Ludolph et al. 2019). By developing a service that provides prompt treatment can potentially reduce the risk not only of variation and waste but possible harm from resulting delays to treatment. Cohesive MDT services have been shown to be the treatment of choice in the absence of any available pharmaceutical intervention (Frundt et al. 2018). Although there has been disagreement in where the best location is for this to be delivered (Clerici et al. 2017, Frundt et al. 2018) it has been considered that outpatient MDT models provide equally as effective outcomes but with the added incentive that they are more cost effective (Frundt et al. 2018). Therefore introducing an integrated MDT service into an outpatient day hospital setting that involves staff with the knowledge and skills to manage these rare Parkinson’s syndromes, not only fulfils evidence based standards for care of these patients but government legislation for quality improvement within the NHS (WG 2011, WG 2012,WG 2013).
Using different approaches to care by fundamentally rethinking care pathways and service delivery in accordance with best available evidence based literature is instrumental for any healthcare project pursuing to execute change. The NHS Institute for Innovation and Improvement (2017) was established to support a culture of metamorphosis within the NHS to nurture change by encouraging creative thinking, partnership working, ownership and evidence based approaches in order to provide better quality services and patient experience. To assist this process they supply a range of quality improvement tools for guidance which can be tailored to the needs of each individual project. Several of these were considered for this service improvement but were discounted as they did not gel with the aim of the project due to a lack of relationship with facilitating the change. The ‘Six Hats(De Bono 1985) and ‘Discovery models are beneficial in transforming team mindsets and thinking with the ‘Theory of Constraints’ and ‘Six Sigmamodels focused on improving processes by looking at obstructions and deficits. As this service improvement is set within an already established team and structure these values are already in place. As such ‘The Model for Improvement (NHS Wales “1000 lives” improvement 2014) seemed a better fit in providing support for introducing a new service within the already established framework of the day hospital MDT setting.
This model is well established and recommended for use throughout the NHS as demonstrated in ‘Improving Quality Togethera web based training programme for NHS staff in Wales (NHS Wales “1000 Lives” Improvement 2014). This has been led by “1000 lives” improvement service and focuses on teaching common and consistent approaches to improving quality that are effective and develop quickly. ‘The Model for Improvement (NHS Wales “1000 Lives” Improvement 2014) is being used to underpin these values and embed a culture of continuous quality improvement by assisting in the identification of “What isn’t working” which considers:
• Patient, family, staff and service feedback to identify flaws in the system.
• What change will give the biggest benefit?
• How much of what we are doing is repeated work, or work that could have been done in the right way the first time?
• What can be made simpler?
• Are there evidence-based interventions not happening for every patient?
NHS Wales “1000 Lives” Improvement (2014 p.32)
A key feature of ‘The Model for Improvement`( NHS Wales “1000 Lives” Improvement 2014) is the employment of three questions (Fig. 3.2) used to provide direction, our position on what currently exists against that direction and a course of action to achieve the planed aim
(Institute for Healthcare Improvement (IHI) 2014). The first question is focused on identifying what quality issues are present in order to structure an aim, ensuring that this is achievable. To determine if the change is an improvement the second question employs the use of measurement as a means to understand and assess the change. Finally, for quality to be improved changes need to be made which requires a process of generating ideas. To assist with driving this process a series of cycles utilising Plan, Do, Study Act (PDSA) provide a framework for developing, testing and implementing the change throughout the process of improvement (Fig. 3.2).
PDSA cycles can be used multiple times as a means of providing structure, continued focus and to ensure the process maintains momentum. A systematic review by Taylor et al. (2014) found a distinct lack of knowledge when it came to applying improvement tools within clinical practice. They suggested that in order for PDSA cycles to be applied effectively systematic and rigorous standards needed to be put in place by monitoring compliance throughout each cycle and reviewing documentation and data collection. This has been tightened up in recent years through Web based training and improvement guides (NHS Wales “1000 Lives” Improvement 2014) which provide support with applying these tools when formulating service improvement within clinical practice.

Fig.3.2

(NHS Wales “1000 Lives” Improvement Driver 2014)

The “PLAN” phase involves analysis of the problem in order to develop a hypothesis stemming from issues identified, how this will be implemented and data to be collected. Moving through to the “DO” phase this is where the potential solution is tested, data is gathered and observation findings are documented. During the “STUDY” phase results are examined in order to measure if the change has been effective and hypothesis supported. The “Act” phase is where implementation takes place which includes any adaptations which have been made prior to moving into a subsequent cycle. An initial small scale test is advised with gradual refinement of ideas and co-ordination of outcomes before moving through each successive cycle (NHS Wales “1000 Lives” Improvement 2014).
As recommended by ‘The Quality Improvement Guide(NHS Wales “1000 Lives” Improvement 2014) this project will incorporate the use of a ‘driver diagram to provide focus, put the change into context, be a prompt to factors which may have been missed and provide a link between the interventions planned and the aim (Fig.3.3). The diagram consists of three columns starting with a clear vision (Aim) showing the desired outcome for the service. In order for this to be achieved the next column considers the elements required to move forward (Drivers) to attain the desired goal with the third column showing the actions (Interventions) that have been employed and are integral to achieving the drivers. The ‘Model for improvement` will provide structure and direction through a series of successive PDSA cycles to guide the process (NHS Wales “1000 Lives” Improvement 2014).
The overall objective is to provide timely integrated MDT follow-up for people with atypical Parkinson’s syndromes to include comprehensive review inside a 6 week window post diagnosis.

Fig. 3.3 Driver Diagram
AIM DRIVERS INTERVENTIONS

Project Trigger
It was becoming evident that people accessing follow-up review who had been diagnosed with an atypical Parkinson’s syndrome were receiving a substandard service to meet their needs. The PDNS responsible for performing the majority of review consultations noticed a pattern of fragmented referrals to access MDT support which often led to delayed treatment or at worse being lost in the system. The project was triggered as a result of a service review audit performed yearly as a part of the responsibilities of the PDNS as a lead role within the Parkinson’s team. This highlighted gaps in people with atypical syndromes accessing MDT support and in some cases missing out on input altogether due to the disjointed referral process resulting from discrepancies within the current outpatient service. Also it was recognised that current outpatient provision was not ideal for this group of patients who as the literature suggests require timely MDT review rather than traditional six monthly follow-up consultations (Hohler et al. 2012).Further to this it was noted that people with these complex conditions required extended time within their outpatient review which was not being considered and had an impact on patient flow within the department. This was an important consideration as providing an efficient, co-ordinated and effective service by optimizing movement through the department does result in improved health outcomes and patient experience (The Health Foundation 2013).
As a caveat to the PDNS review, feedback was being received from both primary and secondary care services via community resource teams (CRT), community based therapy services, day hospitals and outpatient therapy clinics regarding delays with referral. This was impacting on their initiating effective input at the right time. The PDNS also considered the lack of cohesion with referring to different services spread across primary and secondary care as being disjointed and posing the risk that patients may not be receiving appropriate evidence based care. Having identified this as a recurring issue the PDNS made provision to explore ways to change the current system that would be in the best interests of this patient group.
The PDNS raised concerns in multidisciplinary meetings (MDM) with members of the Parkinson’s team (second PDNS, two specialist consultants and personal assistant (PA) to the team) that there were inconsistencies with management of people with atypical syndromes and that the current system did not meet evidence based standards (NICE 2017) which the team agreed. Several options were considered including training primary care teams to receive all referrals (three community resource teams (CRT) within the health board plus multiple community therapy teams) or contain all referrals within secondary services under the care of the day hospital. The later was more feasible as this fit with standards of providing an integrated service, with knowledgeable staff, that was cohesive and sustainable from both provision and maintaining evidence –based practice standards. With two day hospital sites available within the UHB having experience managing people with atypical syndromes, a scoping exercise was carried out to establish which would provide the best location for the service (Appendix 7). As a result of the scoping a site was chosen (location A), with a preliminary meeting arranged with staff to discuss the service improvement (Driver 1). It was agreed that the PDNS would lead the project on behalf of the team with the second PDNS assisting. Prior to the meeting approval for the service improvement was agreed by senior management and local UHB research and development that it met the criteria for a workbased project (Appendix 8).

What are we trying to accomplish? AIMS
It is suggested that before commencing any process of change that it is important to set out a clear aim. Langley et al. (2009) recommend in constructing this consideration should be given to the topic being worthwhile, outcome focused, measurable, involve a specific population, include clear timelines and simple to understand. With this in mind and as stated earlier the aim of this service improvement is to develop an integrated multidisciplinary follow up service for people with atypical Parkinson’s to reduce delays in accessing follow-up support. It is proposed that all patients with these rare conditions will be seen within a 6 week window for follow-up review incorporating cohesive MDT input. By reducing the time between referral and accessing MDT support it is suggested that the patient experience will be improved, access for MDT input standardised and there will be less risk of patients being lost to follow up or not accessing a full range of MDT support.
Driver 1
A preliminary meeting, as previously mentioned, was arranged to liaise with key lead stakeholders within the MDT who were based within the day hospital setting. Attendees included; second PDNS, physiotherapist (PT), Occupational therapist (OT), associate specialist doctor, speech and language therapist (SALT), senior nurse, day hospital manager and administrative clerk with the PDNS taking the lead to outline and discuss the proposed service improvement. Facilitating the meeting did not pose any problems as it was held following the morning multidisciplinary meeting where all members of the team were already present. Consultant leads for the service and PA to the team did not attend expressing that that they would take a peripheral role agreeing to assist if required. They were kept informed of progress at weekly meetings following clinic. Through a process of constructive mind mapping (Appendix 9) it was concluded that follow-up for people with atypical Parkinson’s syndromes could be delivered in a day hospital setting more effectively than a traditional outpatient environment as the infrastructure already supported an MDT model of care. Practitioners were already familiar with managing these syndromes but as it transpired through the meeting, were concerned that fragmented referrals being received from the current outpatient system were resulting in delays and a lack of cohesive input. It became apparent that the service needed a structure that incorporated timely intervention following diagnosis with homogeneous MDT support. A decision was reached that the new service could be accommodated as part of the complex Parkinson’s sessions taking place within the day hospital twice a month. This would provide capacity for people diagnosed with atypical Parkinson’s to be referred for MDT input within the proposed window of 6 weeks.
A major concern highlighted within the meeting was sustainability as patient numbers due to the rarity of these conditions are generally lower. To a degree this had already been addressed. With access to MDT being provided as part of a Parkinson’s complex service where care delivery is compatible, the ability to maintain patient numbers irrespective of being diagnosed with an atypical Parkinson’s syndrome was more feasible. At this point there was no accurate pooled data from across the UHB to indicate numbers of people diagnosed with an atypical Parkinson’s syndrome. For the purpose of the meeting and as a guide the patient list used was of those individuals currently attending their day hospital service (Table 3.1). As they already reviewed the bulk of people with an atypical Parkinsonism it was felt this would be fairly representative of the service as a whole. No inclusion or exclusion criteria were considered at this time as this list was merely used as a guide. The reason for not including patients accessing alternative services within the UHB is that their numbers had not been corroborated at this time. This retrieved higher than expected numbers especially with people diagnosed as DLB. Breakdown of these numbers revealed there were a cohort of patients not known to our service but were part of neurology or other consultant services that accessed day hospital for MDT input. Fortunately this did not pose any problems as the PDNS service was already informally providing assistance to these specialities with the support of the clinical board. This was in response to guidance recommending all patients with a Parkinson’s syndrome having access to a PDNS, which was not in place within these services (NICE 2017). However, this did raise the possibility that constraints could be placed on MDT and PDNS time if the service was saturated by these specialities. This was soon dispelled as it was noted a negligible number of patients diagnosed with atypical syndromes accessing the service from these specialities in comparison to the Parkinson’s outpatient clinic.
Table 3.1
Patient list Number of patients
DLB 25
MSA 11
PSP 6
CBD 2
Under Neurology services 3

Consideration from both the manager and senior nurse was related to impact on staff patient ratios, documentation and education. As part of the regular day hospital service systems were already in place for training, update and review of documentation and staffing. With the service already managing people with these conditions it was deemed that the proposed changes would not pose any new problems. The administrative coordinator did request amendments to the appointment letter in respect of being more explicit regarding the new service (Appendix 10). Apart from that it was deemed the service improvement would not impact on their workload or current role.
With all parties on board a further meeting was held to discuss and plan the way forward. Representation within this meeting was kept to key stakeholders. These included people from the initial meeting apart from the manager who felt their presence would not add value to the process. We arranged to keep them informed of progress via email. Subsequent meeting dates were planned at the end of each contact to maintain consistency with the process. In keeping with the principles of the ‘Model for Improvement` (NHS Wales “1000 Lives” Improvement 2014) (Fig.3.2) discussion focused on planning a strategy for measurement.
How will we know if a change is an improvement? MEASUREMENT
According to the Institute for Healthcare Improvement (IHI) (2014) it is the process of measurement that indicates if a change has been an improvement. This requires careful planning to determine that appropriate measures are used that are pertinent to gathering the data required. Unlike research, improvement projects employ much simpler approaches to data collection. This can prove to be challenging in reigning in any expectation of larger more rigid data collection as is customary with research projects. Within the planning meeting clear boundaries were agreed in order that everyone would adhere to the same brief. Being this is a service improvement project the decision was made to gather enough data so that comparison pre and post intervention could be made without risking data overload. As stated previously, on preliminary review of the available data, higher than expected numbers of patients with atypical conditions were accessing the service. However, analysis of those diagnosed in the previous year yielded a smaller cohort of patients which was felt would be more suitable for retrospective data analysis. Preferably utilising data beyond 12 months pre intervention would help iron out any discrepancies in practice which may occur as a result of medical staff rotation. On discussion it was felt this would be a mammoth task and impractical in terms of a service improvement. A more reasonable 12 month pre and 6 month post data collection was agreed would produce sufficient comparative data. These parameters would be confirmed following the first PDSA cycle (Fig.3.3) as information in respect of patient numbers to this point was not accurate.
The Institute for Healthcare Improvement (IHI) (2014) denotes that there are three sub divisions of quality improvement measurement defined as: Process measures, balancing measures and outcome measures (Table 3.2). In relation to this service improvement each of these were considered to provide further clarity and to ensure all variables were accounted for. However, undertaking any formal measure of any impact to the system was deemed outside the scope of this project, it was agreed that gathering information pertaining to stakeholder opinion would be valuable to add as a further PDSA cycle at a future date. Patient feedback is well documented as an integral component to inform practice and to facilitate a cycle of continuous service improvement (Rozenblum et al. 2013, Lee et al. 2017). Therefore, it was considered that an addendum to this project would be to gain patient opinion on accessing MDT as a follow up service versus a traditional outpatient appointment.

Table 3.2

Types of Quality Improvement Measures
Process measures Looking at parts or steps in a system and if they are performing as planned-tracking progress
Balancing measures Consider if the introduction of a change/improvement has had any unintended reactions elsewhere in the system-potential risks
Outcome measures Reflect the impact of the
change/improvement –impact and end result

Driver 2
As stated previously, data pertaining to numbers of patients with atypical Parkinson’s was incomplete. Capturing this information was agreed to be a reasonable starting point as performing a baseline audit was dependant on having a representative group of patients for inclusion. Also parameters for conducting the audit could not be set without a clear understanding of the numbers involved. This would also facilitate the process of ascertaining the extent of the project, organising responsibilities equitably in order to avoid unfair workload and to ensure data collection was accurate and representative of the service as a whole. In accordance with the ‘Model for Improvement` (NHS Wales “1000 Lives” Improvement 2014) PDSA cycle 1 was applied (Fig.3.3). It was acknowledged that a two pronged approach would be required in order to ascertain numbers of patients with an atypical Parkinsonism known to the service in order to avoid any exclusion. With access to the Parkinson’s database being restricted to consultant only for any data extraction purposes there was no option other than assigning this role to them. The lead project administration clerk was allocated the role of searching both day hospital databases. This information would be used to clarify current attendees including those from other services such as neurology and gerontology. It was accepted that there would be a crossover of information but for the purpose of a thorough search it was agreed that any duplication would be ironed out on review of the lists.

Fig.3.3 PDSA Cycle 1
ACT Plan to proceed with PLAN Gather baseline data.
implementing an MDT follow Identify patients with a up service for atypical diagnosis of atypical
Parkinson’s patients.. Parkinsonism. Extract lists
from the Parkinson’s and
Role: Lead and sub PDNS day hospital databases (x2) team/lead PT/lead/OT/lead and patient notes.
SALT/medic/senior
nurse/Admin clerk Role: Admin clerk, PDNS and
STUDY Analysis of the data.
Reflection on information obtained… Compare to
predictions…delays in follow up, fragmented referrals for MDT,
PDQ-39. Move to progress with DO:Review lists. Extract data to determine those suitable
for inclusion in retrospective audit. Carry out
retrospective audit (Oct
2017-oct 2018)
consultant
service improvement.Role: Lead and sub PDNS Role: : Lead and sub PDNS team,/ team,/ lead PT/lead OT/ lead PT/lead OT/ Lead SALT/ Lead SALT/ medic/senior medic/senior nursenurse

The initial search produced a list of 68 patients which was reduced to 57 when members of the team (ward manager, lead and second PDNS) removed replicated patients. At this stage it was necessary to scrutinise the list further in order to establish a clear list of patients for inclusion in the project. It was deemed that retrospective data analysis was dependant on patients having been diagnosed in the past 12 months and suitable to receive MDT input, in order to establish a clear baseline with which to benchmark against the service improvement. Patients were excluded based on their diagnosis pre dating the set criteria, inability to attend outpatient appointments (nursing home, housebound), having never attended outpatient services being diagnosed in the community, declined MDT input, triaged as unable to receive MDT support (frail and advanced dementia) and out of area. One patient was noted to have died three weeks post diagnosis with an unrelated condition (Table 3.3).

Table 3.3

Excluded Patient List

Reason

Numbers
Diagnosed longer than 12 months 21
Nursing Home care 3
Declined MDT input 1
Triaged as Unable to receive MDT input 3
Out of area 2
Housebound 4
Died 1

On further analysis of the remaining 22 patients three were under the neurology service. As stated earlier this did not pose any problems as the Parkinson’s consultants could access information pertaining to the service improvement using the database. It was also noted that in one patient the diagnosis was revised from MSA to PSP. As both conditions fall under the category of atypical Parkinsonism the data was still pertinent. All twenty two patients for inclusion in the project had a confirmed diagnosis of an atypical Parkinsonism. As previously stated their data would be used as a baseline to compare against evidence retrieved following the service improvement (Table 3.4).
Table 3.4

Atypical Parkinson’s Diagnosis
Patient
numbers Hoehn and Yahr stage
DLB 10 2-3
MSA 7 2-4
PSP 3 3-4
CBD 2 3-4

Breakdown of individual diagnosis identified DLB as the most common atypical syndrome. This was consistent with the figures used at the initial meeting (Driver 1) and the trend nationally (Appendix 1). It was noted that in nine of the patients co-morbidities existed that were unrelated to their atypical diagnosis (Table 3.5). However, on review these were being well managed and did not impede on their ability to participate in MDT input. Analysis of Hoehn and Yahr (1967) staging (Appendix 5) was included as this is a more accurate gauge of level of disability in Parkinson’s syndromes. Having considered all the variables it was deemed that data pertaining to the twenty two patients was suitable for inclusion. According to the NHS Health Research Authority (2019) collecting evidence in this way is an important process in obtaining clear outcome measures. These reflect the effectiveness of the improvement and resulting impact on patients. They also guide clinical decision making and can be predictors of benefit with particular interventions.
Table 3.5
Co-morbidities identified
Number of patients
Diabetes (Type 2) 3
Arthritis 5
Arial Fibrillation (AF) 1
Chronic kidney disease (CKD) 1

As previously mentioned, it had been agreed that the retrospective audit would cover a 12 month period (October-2017-October-2018) which was confirmed as part of PDSA cycle 1 (Fig.3.3). An audit of data from the 22 patients was undertaken looking at four different key parameters in recognition that information needed to be captured pertaining to:
• Length of time from first diagnostic outpatient appointment to follow up
• Was a referral for MDT input completed?
• Length of time from MDT referral to contact.
• Quality of life- Review of Parkinson’s disease questionnaire scores (PDQ-39)
(Jenkinson et al 1997).
It was intended that there would be information available to ascertain the length of time patients spent within their outpatient consultation. Unfortunately this was unavailable as the outpatient system only captures time in and out of the clinic. This time doesn’t include periods of waiting which may be protracted if the clinic is busy or there has been an unexpected delay. As there were only standardised times available of thirty minutes for a new appointment and fifteen minutes for a follow up this data was discounted. What also had to be factored in was that the service improvement would be incorporating consultation as part of an MDT structure scheduled as a two and a half hour slot. This would inevitably lead to interaction between patient and professionals being longer therefore, a fair comparison in consultation time pre and post intervention was not equitable.
Data for the audit pertaining to the twenty two patients was extracted using the outpatient databases, Parkinson’s database and patient notes which were situated in a room within the department. The data retrieved was logged on an Excel spreadsheet having been anonymised by allocating a number to each patient. This process was crucial to ensure the project not only adhered to the UHB research and development guidelines but also upheld professional principles of confidentiality (NMC 2018). Protecting patients’ personal information from improper disclosure by ensuring appropriate information sharing is central to confidentiality, maintaining trust and the provision of safe and effective care (NHS Health Research Authority 2017). These principles would be upheld throughout the project.
Consideration of the four key parameters
Length of time from first diagnostic outpatient appointment to follow up review
Outpatient clinic for the service is consistently held on the same day and at one site. This resulted in no anomalies in data being found as a result of patients being offered an alternative if the clinic was fully booked. The follow up waiting time was calculated by logging the time between the first diagnostic appointment and next follow up contact in clinic. Use of the word contact for purpose of the audit avoided any confusion related to logging a follow up appointment where a patient may not have attended. Reasons for non attendance are documented on the system as did not attend (DNA), cancelled or in-patient. The difference between the two variables was calculated and recorded to provide a follow up waiting time (in weeks) for each patient. All 22 patients returned data with a note that in 2 cases there was a delay documented as cancellation (patient unwell) and in-patient. Both were re-allocated appointments as urgent (cancelled appointment) and upon discharge (Inpatient). In consideration of this the follow up waiting time was adjusted. For the hospitalised patient their in-patient time was deducted. The cancelled patient was assigned a 1 week deduction (agreed by our doctor) as reasonable based on information from their follow up review confirming a urinary tract infection. This information was considered throughout the audit and data adjusted as required.
Was a referral for MDT input completed?
Compiling this data proved to be challenging. A trawl of the notes pertaining to the 22 patients revealed that there was no standardised practice for referral to a therapy service. In order to establish a clearer picture it was agreed that the data should be broken down to identify if a referral had been completed at diagnosis and if so whether this was for multiple or single therapy. This would be useful in determining the scale with which the service improvement would standardise practice and improve access for MDT input.
Length of time from MDT referral to contact
As an addendum to understanding referral practices it was agreed that information regarding the time between the therapy referral being sent and the patient receiving input was required. It could not be assumed that by sending a referral signified the patient had received therapy.
Quality of life- Review of Parkinson’s disease questionnaire-39 scores (PDQ-39)
The patient reported measure of health status and QoL (PDQ-39) is a validated tool to assess health related status and QoL for people with a Parkinson’s related diagnosis (Appendix). First developed by Jenkinson et al. (1997) it provides a subjective evaluation of an individuals concerns regarding daily life. Used as a regular part of clinical assessment, audit of results will be used to determine if patients perceptions of their QoL has enhanced with the service improvement.
On completion of PDSA cycle 1 (Fig. 3.3) a meeting was arranged to draw together all the information retrieved and to plan the next stage of the project, implementation of the service improvement (Driver 3).
What changes can we make that will result in an improvement? IDEAS
The Institute for Healthcare Improvement (IHI) (2014) indicates that implementing a small number of changes has the greater potential to result in improvement. Central to this is streamlining processes in order to eliminate elements that are not effective. In essence, if something does not add value remove it or change it so that it is more constructive. The baseline audit had revealed several areas for potential improvement including:
• Connecting up the patient journey.
• Cohesive referral to access MDT
• More timely intervention
• Reducing variation in the way follow up services are delivered for people with atypical Parkinsonism.
As there were areas of commonality two key outcomes emerged:

  1. To reduce waiting time between diagnosis and follow up appointment
  2. To provide timely integrated multidisciplinary MDT intervention to all people diagnosed with an atypical Parkinsonism.

Driver 3
It was agreed by the team (PDNS x 2, lead PT, Lead OT, Lead SALT, senior nurse, associate specialist doctor and administrative clerk) that introducing an integrated MDT follow up service for people with atypical Parkinsonism had the capacity to resolve issues highlighted within the baseline audit. As a result all people diagnosed with an atypical Parkinsonism would receive their follow up as part of an integrated multidisciplinary service within the day hospital setting. A move to progress with the service improvement was approved. Members of the team that would be involved in delivering the service did not require any supplementary training. As previously mentioned, they were experienced in managing patients with atypical Parkinson’s syndromes and as such there were already processes in place for maintaining their knowledge and skills. This also included education for new staff and succession planning so that there would be no interruption to service delivery. The NMC (2018) advocates that robust evidence based processes should be in place to guide practice, inform decision making and maintain standards.
Consideration of the referral process.
It had been recognised in the baseline audit that referrals for therapy input were inconsistent. It was agreed that standardising practice prior to the introduction of the service improvement was essential to ensure patients would receive timely intervention. As the discrepancy in practice originated from visiting doctors, a meeting was arranged between the PDNS team and consultant specialists to discuss rationalising the process. Feedback from the baseline audit was provided with the consultants agreeing to tighten up documentation practices in line with UHB recommendations. This would be incorporated as part of the doctors’ orientation prior to going solo in clinic. It was important to clarify this process as the service improvement was dependant on follow up incorporating, timely referral for integrated MDT support to one access point for all patients diagnosed with an atypical Parkinsonism. Further to this the administrative clerk was advised that all referrals were to be processed as urgent and receive a follow up appointment within 6 weeks as discussed as part of PDSA cycle 1 (Fig.3.3). The outpatient clinic clerk was informed by the lead PDNS of the new service with advice not to arrange any follow up clinic appointments for people diagnosed with an atypical Parkinsonism. In order to maintain patient confidentiality this would be communicated by ticking the no follow up required box on the appointments form handed to the clerk on completion of the consultation. Both clerks agreed to maintain communication in order to avoid any confusion or duplication of appointments.
Driver 4
A meeting was held with key stakeholders (lead PDNS, second PDNS, OT, PT, SALT, senior nurse, associate specialist doctor and administration clerk) to progress with implementation of the service improvement to provide an integrated MDT follow up service for people with atypical Parkinsonism. In keeping with the ‘Model for Improvement` (NHS Wales “1000 Lives” Improvement 2014) PDSA cycle 2 was executed (Fig.3.7).

Fig.3.7 PDSA cycle 2

ACT Feedback results to senior colleagues (Consultant specialists x 2,
Nurse manager, Lead nurse for day hospital services).
Consider viability of the service based on audit results.
Plan further PDSA cycle

STUDY Continue analysis of audit data pre and post intervention

Compare if data has met predictions of providing MDT follow up 6 weeks
or less ( ⅔ reduction) post service improvement. Analise access to therapies, PDQ-39.
Summerise findings and reflect.
Role: Lead and sub PDNS/Lead
OT/Lead PT/Lead SALT/ specialist medic/admin clerk.

PLAN Implementation of MDT follow up service.
Who? People with atypical Parkinsonism.
What? MDT folllow up service.
Where? Day Hospital. 2 follow up sessions per month (complex service)
When? Audit between Nov 2018-April 2019 (newly diagnosed)

DO Implement follow up service.
Collect Data (6 month period)
Audit: 1. Time between diagnosis and follow up. 2. MDT interventions
(Adapted PUKAT 2017)
Benchmark against pre audit data.
Commence analysis of results
Role: Lead and sub PDNS

The MDT follow up service was triggered on diagnosis of an atypical Parkinsonism (DLB, PSP, MSA and CBD). Where Patients fit this criteria a referral form was generated and faxed to the day hospital. This process was completed following clinic. The receiving administration clerk ensured all referrals were checked by a qualified member of staff to confirm they were eligible for the service. Patients were then assigned an MDT follow up appointment in the day hospital for no greater than 6 weeks post diagnosis. Exceptionalities to the 6 week deadline were factored in to include:
• In-patient admission

• Infection risk (Diarrhoea and vomiting, flu, other communicable infection posing a
risk)
• Away (holiday/visiting)
• Generally unwell
• Increasing disability and unable to attend outpatient appointments.
In instances where patients needed to be reallocated an appointment this was arranged as an urgent review. For people unable to attend an outpatient service a community referral was completed to the community resource team (CRT) for intervention.
With the service improvement being incorporated as part of a well established MDT structure no adaptations to therapy input were required. As previously stated, people with atypical Parkinsonism have similar MDT needs with people in the complex stage of Parkinson’s. There were issues surrounding flow which needed to be addressed. With the new service requiring patients access all MDT professionals it was agreed that each patient would be tracked during their attendance to ensure they had engaged with all MDT professionals. It was decided that the best way to do this was to use the Parkinson’s UK audit tool (PUKAT) (Parkinson’s UK 2017) as this had the capacity to document all MDT involvement. (Appendix 12). Each patient was assigned a 2 ½ hour time slot to receive MDT assessment (PDNS, PT, OT, SALT, doctor review). This would allow ½ an hour for each interaction. Future care planning was decided at the end of the day session in the multidisciplinary meeting (MDM). Documentation for each intervention once completed was placed on the UHB secure database which was accessible by all involved practitioners. The consultants were kept updated in MDM following clinic. The day hospital manager continued to receive information via email at their request.
As part of PDSA cycle 2 (Fig. 3.7) it was decided that audit data would be collected over a period of 6 months (November 18-April 19). This period was calculated to account for the rarity of these conditions and as a consequence allow enough data to be captured to validate the audit. The process of audit is considered an essential component of service improvement. It Involves measurement of clinical outcomes which are set against welldefined standards and evidence- based principles (Esposito and Canton 2014).
As previously mentioned an adapted version of the PUKAT (2017) (Appendix 12) was used to ensure all patients had received contact with MDT members. The PUKAT (2017) is a recognised tool for quality improvement which can be adapted for use in clinical practice. The tool has been guided by values underpinned by the latest NICE guidelines (2017) for management of Parkinson’s. NICE is an independent organisation established to standardise practice through evidence –based advice. The underpinning values set out in the NICE (2017) Parkinson’s guidelines advocate that Patient’s diagnosed with any Parkinson’s syndrome should have access to prompt MDT support. The full audit tool is extensive being split into different sections for each individual MDT practitioner to complete. For the purpose of this project these sections were combined for simplicity of data capture, to avoid duplication and streamline analysis. Domains deemed relevant for inclusion related to demographics (ethnicity removed), diagnosis, referral and MDT intervention. The Hoehn and Yahr staging scale (Appendix 5) was also added to the tool to provide information on the severity of disability. Sections within the modified tool (Appendix 12) would be completed by the relevant practitioner.
The audit was used to measure the impact of the service improvement post intervention making comparisons to the baseline data. The information retrieved was compiled between November 2018 to April 2019. Analysis of data both pre and post implementation will allow reflection as to whether the project has achieved its aim.

Chapter 4
Results
Driver 5 – continuation of PDSA cycle 2
Results from the audit following introduction of the service improvement represent 6 months worth of data collected from 12 patients with a confirmed diagnosis of an atypical Parkinsonism. Permission for the service improvement had been approved by the senior nurse manager prior to commencing the project. Information was collected by the lead PDNS and second PDNS team from the day hospital database. These results were compared with the baseline audit pre intervention.
During the designated period of the audit (November 2018 –April 2019) on implementation of the service improvement a total number of 12 patients were diagnosed with an atypical Parkinsonism. One patient remained under review as the exact atypical diagnosis was unclear. A further patient had their diagnosis changed from MSA to PSP at follow up.
Parallel with the baseline audit the highest proportion of patients were determined to have DLB (Table 4.1). Again co-morbidities were well managed and as such did not impact on the ability of patients to participate in MDT input. With Hoehn and Yahr (1967) staging (Appendix 5) being included as part of the audit a more accurate gauge of disease severity was identified. It was noted that patients were exhibiting the same stage of disease severity with those at baseline (Table 4.1) in all groups.

Table 4.1

Patient List Number of patients Hoehn and Yahr stage
DLB 6 2-3
MSA 3 2-4
PSP 2 3-4
CBD 1 3-4

The baseline audit (October 2017-October2018) identified that there were significant delays and variability with follow-up in the traditional outpatient service. Data from the 22 patients (Table 4.2) reports the number of days waited on average from diagnosis to follow-up appointment as 130 days. This was calculated taking the minimum follow up appointment of 42 days and maximum of 203 days giving a range of 161 days. The average (mean) follow up of 130 days was determined in conjunction with the range to identify the extent to which the current system was not meeting the needs of this patient group. It was also a useful determinant to assess the degree with which the present system waiting times needed to be reduced to meet the aim of follow up appointments within a 42 day (6 week) window. With an average interval time being calculated at 130 days a ⅔ reduction target was set (43 days) which aligned with the proposed 42 day (6 week) reduction target. Extrapolating this data is useful however, it misses the complexity of variation in distribution of follow up appointments over time. This is more clearly illustrated using a run chart (Fig. 4.1). This has been shown to be more effective when communicating the variation in a process (NHS Improvement ACT Academy 2018). It is deemed that a reduction in variation within a process makes it more reliable (NHS improvement ACT Academy 2018).

Table 4.2

Patient Number Interval between diagnostic and follow up appointment (DAYS) Patient Number Interval between diagnostic and follow up appointment (DAYS)
102 168 124 203
104 182 126 91
106 70 128 182
108 126 130 98
110 154 132 126
112 49 134 70
114 112 136 182
116 182 138 98
118 63 140 168
120 182 142 182
122 147 144 42
Average interval time between appointments (days) 130

It was identified in the baseline audit that in 4 of the 22 patients a referral for therapy input was not completed. In 1 case the patient had declined a referral but agreed at their subsequent follow up appointment having been counselled regarding the benefits. With the remaining 3 patients it was recognised that they had been reviewed by a registrar who was on a short term placement to the regular team (PD consultants x 2, PD specialist nurses x 2). As a result no referral for therapy had been initiated at their diagnostic appointment. With the 18 patients who were referred for therapy the majority had been sent for single therapy input through an outpatient route (55%). The remaining 45% were allocated for MDT input within a day hospital or via CRT (Fig. 4.2).

Fig 4.2

All 18 patients from the baseline audit were found to have received therapy. Of the 10 patients who were referred for single therapy input 6 were subject to the longest waiting time to access the service (140 + days) (Fig. 4.3). The CRT service proved to be the most responsive with the 2 patients referred accessing therapy within 1 week. However, it was noted when evaluating their notes that they did not receive MDT review as requested. All referrals to CRT are triaged in relation to achieving specific outcome measures with regard to mobility and functional ability. Documentation revealed that the 2 cases were reevaluated to receive a single therapy input OT, PT or SALT based on the severity of a presenting symptom. This increased the single therapy referral rate to 66% resulting in a reduction in MDT input to 33%. The average (mean) waiting time to access therapy was 78 days with a range of 156 days. Again significant variation in the data was seen (Fig. 4.3).

Following the introduction of the service improvement there was a more consistent pattern with accessing follow-up and MDT input (mean 16 days) which achieved the proposed target of well below 42 days (Fig.4.4). The range was calculated at 11 days. In comparison with the traditional outpatient model there was a noted reduction in follow up time from a maximum wait of 203 days pre implementation (Fig. 4.1) to a maximum wait of 22 days post service improvement with the integrated model (Fig.4.4). A total reduction of 89% in waiting time.

Fig. 4.4

All 12 patients received MDT input post intervention resulting in 100% compliance as opposed to only 33% compliance pre intervention (Fig. 4.5).This is in keeping with NICE (2017) guidelines that all people diagnosed with Parkinson’s should receive prompt access to MDT support.

Fig. 4.5

Percentage of patients who received MDT input

120%
100%
80%
60%
40%
20%
0%
MDT (PRE) MDT (POST)
PDQ-39
Following the implementation of the service improvement PDQ-39 scores identified an overall positive improvement (Fig. 4.7). The majority of the 12 patients’ scores were within the lower categories (never to sometimes) in comparison to pre intervention where the majority of the 22 patients scored in the higher categories (sometimes to always) (Fig. 4.6).

Fig. 4.7

Data to this point had identified that the service improvement had achieved targets set before implementation. Access to an integrated MDT follow-up service for people with atypical Parkinsonism had reduced waiting times to access services as well as improving engagement with MDT input.

Chapter 5
Discussion
Chapter 3 provided a detailed account describing the process of implementing the proposed change utilising the ‘Model for Improvement(NHS Wales “1000” Lives Improvement 2014) (Fig 3.2) and associated tools to plan, implement and evaluate the work-based element of the project. Results (chapter 4) provided a detailed analysis of pre and post intervention data to establish if there had been any measurable impact in relation to patient management. This chapter will address the final stage of the ‘Driver Diagram (Driver 6) by completing the process of moving through the ‘Model for Improvement(NHS Wales “1000” Lives Improvement 2014) and associated PDSA cycles to provide analysis of the service improvement. Evaluation of the results will be used to identify key findings which will be discussed in relation to the aims of the project later in the chapter. The following summary details the outcome of the change and information retrieved during the workbased part of the project. Driver 6 Analysis A baseline audit of 22 patients performed prior to the introduction of the service improvement revealed that between October 2017 and October 2018 patients waited an average (mean) of 130 days for a follow up appointment in clinic. Out of the 22 patients 18 were referred for therapy input with 55% (10 patients) referred for single therapy in outpatients and 45% (8 patients) being referred for MDT input either in day hospital or with the CRT. These figures were adjusted as 2 people allocated MDT input via CRT were only given single therapy following their triage reducing the MDT figure to 33%. There was an average (mean) 78 day wait to access therapy with a significant rate of variability in length of time patients waited to receive input (Fig. 4.3). Hoehn and Yahr (1967) staging of progression was between 2-4 both pre and post intervention demonstrating patients were in various stages of advancing disease. A total of 12 people were diagnosed with an atypical Parkinsonism during the designated period of post intervention data collection (November 2018-April 2019) receiving their follow up appointment as part of the new integrated MDT day hospital service. The effectiveness of the service improvement was evaluated by auditing the time from diagnosis of atypical Parkinsonism to accessing the integrated MDT follow up service, reviewing the pattern of variation in referral and assessing the percentage of patients who received MDT intervention. The results identified that there was an 89% reduction in waiting time to access therapy which also referred to follow up review as this is an integrated service, the variation in referral to access MDT went from 156 days to 11 days and of the 12 patients included in the audit 100% received MDT input in comparison to only 33% pre intervention Results from PDQ-39 (Jenkinson 1997) identified that pre implementation over 200 responses for ‘always indicating that their condition impacted on daily life (Fig. 4.6). In comparison, post intervention this reduced to below 60 (Fig. 4.7). This seems to indicate that having more timely intervention and integrated MDT follow-up support positively impacted on perception of improved QoL.
A key aim of this project was the development of an integrated follow up service within an MDT day hospital setting to address and potentially resolve variability and delays to care.
The literature identified that integrated MDT follow up services have the best outcomes for people diagnosed with these conditions (Bukki et al. 2016, Clerici et al. 2017, Frundt et al. 2018). This consensus of opinion exists despite there being some discrepancy in what constituted MDT and place of service delivery (in-patient or outpatient/community) (Hohler et al. 2012). The rarity of these conditions was reflected in the low numbers included within the studies which aligned to figures within the workbased project. However, as the service improvement is a small scale change and evaluation size is not relevant. The literature reflected this as the limited number of participants did not affect service delivery as studies utilised MDT services which were already in place (Hohler et al. 2012, Frundt et al. 2018).
The baseline audit of the workbased project identified significant variability in waiting time for patients accessing a traditional follow up appointment in clinic (range 0-161 days), which was paralleled with referral wait times to access therapy (range 0-156 days). The variability in waiting time was noted to be a combination of fitting in with traditional outpatient models of referral for follow up, and a lack of consistency in the type of therapy referral initiated. Inconsistency was noted throughout the literature with a lack of standardisation regarding the model of service delivery. Marck et al. (2013) identified with the concept of a traditional outpatient model, whereas other studies took a broader view including various
MDT therapists as part of their service (Traistaru et al. 2017, Clerici et al. 2017, Frundt et al. 2018). It was noted in all the studies that there was no specified time frame given in respect of accessing MDT therapy input. This is significant as atypical Parkinson’s syndromes are rapidly progressive. In studies by Hohler et al. (2012) and Monticone et al. (2015) reference was made to Hoehn and Yahr (1967) staging of disease progression which identified with moderate to complex phase disease (2.5-5). There was no indication that disease stage had any impact on engagement with MDT. This pattern was similar to that seen in the workbased project (chapter 4).
The significance of MDT support was noted in a study by Bukki et al. (2016) who demonstrated a 68% improvement in stabilisation of symptoms as a result of care being provided as an in-patient MDT model. Similarly, benefits were seen in outpatient models with improvements in survival (p< 0.001) plus the added bonus that provision of care was less costly (Rooney et al. 2014, Frundt et al. 2018). Variation in referral practices had a resulting impact on the type of therapy a patient received and wait time. This was found in the workbased project prior to the service improvement. Patients who were reviewed by a visiting clinician were less likely to receive a referral for MDT input and in 4 cases did not receive any form of therapy referral at diagnosis. Given that guidelines recommend people with Parkinson’s syndromes have better access to MDT support (NICE 2017), streamlining the system to ensure uniformity is essential. Providing timely access to services is a fundamental underpinning factor within care of patients with atypical Parkinsonism due to a rapid disease trajectory and limited available treatment options (Ludolph et al. 2009). As highlighted within the work based project only 33% of patients’ pre intervention accessed MDT. This was not only the result of variable referral but dependant on local services (CRT team) system for triage. Therefore, the ability of patients to access services that are appropriate needed to be considered in terms of those adhering to recognised guidelines (WG 2013, NICE 2017).
Where patients with atypical Parkinsonism have accessed MDT services there have been demonstrated improvements in functional ability. Bukki et al. (2016) noted that 68% of patients symptoms stabilised or improved with 47% being deemed fit for discharged. Falls reduction and improvement in survival were also noted (Clerici et al. 2017, Frundt et al. 2018). With the local projects retrospective baseline audit identifying that 66% of patients had received only single therapy input it appeared to indicate a discrepancy in the application of best practice guidelines (NICE 2017). However, it could also be argued that the variable process of referral to therapy (55% single therapy and 45% MDT through two separate services) itself had an unintentional consequence that may have led to disparities in care.
Evaluation of the service improvement
As demonstrated within the local project a comparison of audit data performed retrospectively one year pre intervention and six months post identified improvements in all measured parameters (referral time to therapy, MDT input, health and QoL status). It is worth noting that due to time constraints a six month post intervention time frame was imposed to ensure completion of this workbased project. Extending this period to one year post intervention would highlight any extraneous influences and establish if the momentum of improvement was sustained.
There is a paucity of literature available which relates directly to the care of people with atypical Parkinsonism which in itself is a reflection of the rarity of these conditions.
However, of the studies that are available there is a relationship to the project in applying MDT models of care in the management of these conditions (Monticone et al. 2015, Bukki et al. 2016, Clerici et al. 2017, Frundt et al. 2018). It is noted that there were discrepancies in service delivery between in-patient models of care versus outpatient services. Both delivered the same outcomes in terms of functional and QoL improvements yet from a financial perspective the outpatient model proved more cost effective (Trend et al. 2002, Rooney et al. 2014, Frundt et al. 2018). Furthermore, it was identified that outpatient models have a more realistic approach as patients are exposed to their normal daily routines whilst receiving treatment as opposed to being under hospitalised conditions. The workbased project related to these models of care in that delivery of the service took place within a day hospital setting where follow up was incorporated inclusive of MDT therapy. It is also worth highlighting that even when patients received more intense forms of therapy consistent levels of input were maintained irrespective of stage in disease progression (Hohler et al. 2012, Monticone et al. 2015). Similarly, this was identified in the local project that people at different stages of disease (Hoehn and Yahr (1967) stage 2.5-4) were able to engage in MDT input.
The local service improvement noted 100% of patients accessing MDT input post implementation in comparison to 33% pre implementation. Time from referral to accessing therapy reduced by 89% with range falling from 156 days to 11 days signifying a more even distribution of referrals. A time frame between diagnosis to accessing MDT input was not identified in any of the studies. They used Hoehn and Yahr (1967) staging of disease progression to gauge patient complexity (2.5-5) which despite having a slightly wider range did compare to the local project (Hohler et al. 2012, Monticone et al. 2015).
There was a lack of consistency throughout the literature pertaining to the makeup of an MDT model of care (Marck et al. 2013, Traistaru et al. 2017, Frundt et al. 2018) Services ranged from what would be considered to be a clinic based set up (Parkinson’s specialist nurse, movement disorders specialist) to those involving wider members of the therapy team (PT, OT, SALT). As the project was utilising an established service within the day hospital the model of care was already in place. Prizer and Browner (2012) in their limited systemic review identify the need for more research in order to establish what truly constitutes an effective MDT service. It was interesting to note that outcome measures improved regardless of makeup of the service. In studies by Monticone et al. (2015) and Traistaru et al. (2017) where falls risk measures were assessed both identified an improvement in reduction of falls despite the programs being provided as an in-patient and outpatient service.
Within the local project the PDQ-39 identified that the post intervention group associated with increased levels of well being as a result of their symptoms having less impact on their daily management. This was confirmed with the majority of responses ranging between the never to sometimes categories as opposed to the pre intervention group who identified with sometimes to always. This tool was utilised in the majority of studies to report health related outcome measures in terms of the provision of MDT input (Marck et al. 2013, Ferrazzoli et al. 2018, Eggers et al. 2018). However, Murdock et al. (2013) used a qualitative approach through interviews to explore the emotional and psychological benefits of MDT support. The act of being involved in therapy with peer support and social interaction was found to have a direct correlation with feelings of overall well being which in turn positively affected perceived QoL.
Using the ‘Model for Improvement` (NHS Wales “1000” Lives Improvement 2014) was a fundamental component of the project ensuring the process of improvement maintained a steady momentum. The use of 3 questions and PDSA cycles gave rise to careful planning of the process and facilitated evaluation and reflection especially whilst moving forward through the stages.

This local project involved the engagement of a well established multidisciplinary team and as such it was important to identify roles and responsibilities early on in order to avoid conflicts of interest. The PDNS facilitated the lead role which was assigned to the second PDNS during periods of absence. Regular meetings were held to ensure stakeholders maintained their impetus and involvement in the process. Fortunately, any issues related to staffing were managed by the nurse manager and as such sickness and absence did not impact on the process. Any new members of the MDT who joined during the project were trained in accordance with their standards of practice. As therapy of patients with atypical Parkinsonism fell within complex management this training was already in place. This also helped to dispel any concerns related to sustainability of the service as input could be delivered as part of their complex service. Reference was made to the NICE (2017) guidelines in order to clarify management and to establish any common denominators of care within current service provision. With only 12 people receiving a diagnosis of an atypical Parkinsonism during the 6 month period of the project it was felt there would be very little impact on the service.
The formalised system that is now in place providing follow up for people diagnosed with an atypical Parkinsonism has enabled the service to provide more responsive care at an earlier stage in the disease trajectory. A further benefit has been improvements in documentation with regular updating of the databases to account for deceased and community based patients. This has resulted in a more robust and accurate system of reporting and log of patients with atypical Parkinson’s syndromes. In terms of this service being prevalent within the context of the wider population it may be feasible in terms of complex chronic disease management although this concept has not been validated.

Chapter 6
Conclusion
This work-based project was designed to address variability and delays in follow up management for people diagnosed with rare atypical Parkinson’s syndromes with the development of an integrated MDT follow up service within a day hospital setting. Outpatient services were not designed to meet the needs of this patient group and as such their pattern of follow up and referral for MDT input fit within the regular routine of the service. This lack of structured management resulted in patients experiencing delays and variability in accessing support. Early access to MDT input is vital as these conditions are rapidly progressive and the window of opportunity to provide support is limited in comparison to other Parkinson’s syndromes. The current outpatient system was also failing to meet best practice guidelines of providing prompt access to MDT support (NICE 2017).
Throughout this project a systematic approached was employed to address the aims and objectives and assist the planning, implementation and evaluation of the service improvement. Comprehensive literature review provided insight and clarity into the degree with which MDT input can benefit long term management both physically and psychologically. This confirmed the extent with which discrepancies within current practice were impacting on patient management with people diagnosed as having an atypical Parkinsonism.
The ‘Model for Improvement` (NHS Wales “1000” Lives Improvement 2014) and associated PDSA cycles were used to provide a structured systematic approach to developing, testing and implementing the change. Incorporating the service within an already established framework of the day hospital setting employed the expertise of MDT professionals who were already skilled in the management of these rare conditions therefore evidence based practice and knowledge was already in place. Sustainability was a concern but this was addressed with the decision to include the service as part of the complex Parkinson’s management days where patients needs mirrored those of people with atypical
Parkinsonism. Audit criteria were used throughout the process as a means of measuring the impact of the service improvement and associated success of the change.
A systematic literature review retrived a paucity of articles related to the management of people with atypical Parkinson’s which somewhat reflects the rarity of these conditions. MDT models of care were found to provide the best outcomes although what constituted the structure of MDT was inconsistent. However, the majority did identify with having a physiotherapist, OT, PDNS and specialist medic as a standard. There were associated improvements in QoL indicators as a result of integrated MDT support although this was generally based on PDQ-39 (Jenkinson et al. 1997) questionnaire results looking at health status as having an impact. Despite this, there were elements identified that did relate to the project. These were related to stabilisation or functional improvement with symptoms, self management strategies, integrated therapy support and education.
The changes introduced as part of this work based project demonstrate the benefits of collaborative working and putting the patient at the centre of everything that we do (WG 2015). Developing a system beyond the boundaries of the traditional outpatient service promoted improved communication particularly with streamlining referral practices but also developed an improved MDT model of care. This had positive repercussions with patient care as they accessed one service that addressed all their management needs.

It is acknowledge that adaptations to the follow up service will continue with future PDSA cycles. People with atypical Parkinsonism represent a small proportion of the total number of people diagnosed with a Parkinson’s syndrome. However, the trajectory and lack of available medical treatments results in management being based around non pharmacological options. Variability and delays in accessing MDT support and follow up have been addressed within current available resources. With careful planning and utilisation of a service that already had robust structures in place has resulted in patients with atypical Parkinsonism receiving the care they need and deserve.
Recommendations for practice.
The following are recommendations for future practice as a result of the work based project

  1. PDSA cycle 3 Quality of life feedback
  2. 6 month audit of the service to exclude any extraneous data
  3. Continue the cycle of regular meetings with the MDT team
  4. Presentation of results to consultant specialist with update on progress.
  5. Share practice with the wider team. Liaise with day hospital 2 with a view to roll out the service cross site.
  6. Present at the Parkinson’s excellence network meeting both at local and national level
  7. Benchmark with other PD specialist nurse services through meetings and forums
  8. Poster presentation at specialist nurse conference
  9. Abstract and poster presentation for Movement Disorders society world congress
  10. Further research into the relationship between co-morbidity and atypical Parkinson’s syndromes
  11. Research into the impact of autonomic symptoms and relationship to physical symptoms
  12. Advanced care planning in relation to MDT support.

Appendix 1

Epidemiology

 Mean age of onset   Median 

Survival Incidence Prevalence
(Age
Adjusted)
MSA 56 yrs 5.1yrs 3 per 100,000 4.4 per 100,000
PSP 65 yrs 2.6 yrs 1.1 per 100,000 6.4 per 100,000
CBD 64 yrs 2.6 yrs 1 per 100,000 2 per 100,000
DLB 75 yrs 3.3 yrs 5.9 per 100,000 1.6 per 1000
IPD 69 yrs 7.8 yrs 15-20 per
100,000 160 per
100,000

Source: PSP Association (2018), Macleod and Counsell (2015), NICE (2017) Appendix 2
The Health Foundation four principles of person centred care (2016).
• Affording people dignity, compassion and respect
• Offering coordinated care, support or treatment
• Offering personalised care, support or treatment
• Supporting people to recognise or develop their own strengths and abilities to enable them to live an independent and fulfilling life

Appendix 3

PRISMA (2009) Flow Diagram

Appendix 4

 Author and Date     Aim     Study Design    Setting and Sample 

size Main findings Strengths and Limitations Codes/Themes
1 Frundt et al. 2018 To evaluate the effect of a Parkinson’s day clinic as a new treatment for patients with complex
Parkinson’s syndromes Service
improvement

 Hamburg-Germany 

Day unit

Convenience sample
184 patients of which:
169-Parkinson’s
5 Atypical Syndromes 10 Unconfirmed diagnosis (either Parkinson’s or Atypical)

 Improvement in motor 

and non-motor scores

Reduced time accessing
MDT input from referral

Therapy optimisation:
• Upgraded
treatment plans
• Inclusion of counselling and support
• Improved
interdisciplinary communication
and co-operation

A more cohesive service as therapies delivered
within one location

Positive patient service evaluation recognising benefits to quality of life overall.
Use of recognised universally accredited tools for motor and
non-motor scores

Clearly defined
demographics

Limitations:

Only short term outcome results were presented therefore a placebo effect cannot be ruled out.

Scores were not always completed by the same person therefore bias cannot be excluded Patients only referred via Multidisciplinary
intervention

Single point of access

Time reduction (Referral to
accessing input)

Improved
communication

Cohesive services

                    Neurology and accessing one 

single locationnon
generalisability
2 Murdock et al.
2015
To explore how people with advanced Parkinson’s value engagement in occupational activities to enhance their daily lives Qualitative studyPhenomenological approach Ulster

Convenience sample

Included various
Parkinson’s syndromes

Interviews conducted within patient’s home and suitable venue convenient to the participants.

A total of 10
participants-6 male and
4 female

 Need to improve access to occupational therapy to people living with a life limiting neurodegenerative 

conditions

The experience of engaging in occupation was deemed more important than the outcome.

Close links were identified with palliative care models with this approach being deemed relevant from
diagnosis

Earlier and quicker access to MDT support is essential due to rapid disease trajectory and resulting changes to symptoms.

 Convenience 

sample-bias

All participants were recruited being active members of the Parkinson’s UK organisation which may have influenced who volunteered. High risk of bias

Small sample size

 Team support 

Early
engagement
with MDT

Palliative care
model (Holistic)

Continuity of care throughout all stages of disease

3 Hohler et al. 2012 To investigate the effectiveness of an in-patient
multidisciplinary movement
disorders program in improving functional status for patients with atypical
Parkinsonism. A pretest-posttest design

Outcome measures:

FIM motor score used-18 item
assessment of disability

2 minute walk
test (TMW)

Timed “up and
go” (TUG)

Berg balance score (BBS)static
balance

Finger tap test(FT) Boston-USA

Convenience sample

A total of 91
participants

25 Vascular
parkinsonism

19 MSA

4 PSP

43 Combination CBD, DLB, Drug induced,
toxin exposure, unknown Improvements shown in outcome scores (except
FT) with MDT alone

Mean values
FIM increased from 41.370.8

TUG decreased from 81.5
secs to 42 secs

TMW increased from
138.9 ft to 202.5 ft

BBS increased from 22 to
29.5

FT Left 60.2 to 71.7
FT Right 68.3 to 79.3

Concentrated
multidisciplinary input in
conjunction with medication changes improves functional status

Atypical syndromes require Integrated services which current outpatients cannot provide

No current standard Good spread of
Atypical
syndromes

Patients at a higher level of disability suggesting functional gains can be achieved
in patients with complex
conditions

Objective measure calculated at both peak and trough medication dosesrobust

Validated tools
used

Limitations identified:

Convenience
sample

Lack of a control
group
Focused MDT input

In-patient rehabilitation more effective than outpatient models

Functional benefits to patients with atypical complex late stage disease

                protocol for MDT available  Intervention by MDT and medication changes were simultaneous making it difficult to ascertain if 

MDT intervention, medication adjustments or both improved
the results

Intensive input may have
resulted in a Placebo effect

No long term
follow up data

4 Traistaru et al. 2017 To evaluate the
efficiency of a
complex rehabilitation program with reducing symptoms and improving
quality of life in patients with Parkinsonism Randomised
controlled trial
(RCT) Romania

Rehabilitation hospital

2 groups (E study group and control)

27 participants:

Control 11 men
2 women Significant changes seen between control and study groups across all scores-study groups achieved greatest improvement.

Functional ability maximised with focused MDT input in one location
Randomisationdata anonymity is
more robust

Use of valid
accredited tools

Equal male to
female split

Pre diagnostic Improved functional ability with an integrated
program

Structured exercises following validated scoring tools

Study 11 men
3 women

Comprehensive geriatric assessment and imaging performed to support
diagnosis

Scores-
BBS,TUG,TMW,NEADL
(Nottingham Extended
Activities of daily living) Transferable across all age and gender groups test and neuroimaging to secure the diagnosis of Parkinsonism for inclusion in the trial.

Limitations:

Small sample size

Psychological outcomes not assessed-no
patient feedback

6 week programbased on Parkinson’s model. Limited validated evidence regarding appropriate length of
intervention

 and methods 

Increased time in contact with patient group
5 Clerici et al. 2017 To analyse the effectiveness of an intensive multidisciplinary RCT Italy

Rehabilitation hospital
Improvements in functional ability across both groups virtually equal Randomisation of groups-reduces
bias
Functional benefits with focused MDT
input

    program within a rehabilitation setting in patients with PSP to identify if this improves their functional ability and management.      Convenience sample-24 consecutive people with PSP admitted to movement disorders 

rehabilitation hospital

Computer generated group randomisation-24 each group

Groups assigned to either robotic device Lokomat plus MDT or treadmill using visual cues and auditory feedback plus MDT (traditional treatment for people with Parkinson’s)
Decreases in falls

Improvement in balance

Goal based multidisciplinary treatments are most effective for people with
PSP

Rehabilitation MDT based settings provide the most effective management pathways Validated scores used both physical and
cognitive

No statistically significant differences in groups from
baseline

Limitations:

No Control group

Patients with cognitive impairment were included which may have affected the
results

Small sample size

No follow up data
Increased contact and time benefits management

Rehabilitation environment most effective in meeting patients needs
6 Bukki et al. 2016 To determine healthcare service usage of patients diagnosed with PSP and CBD and the role of Retrospective analysis Munich

Palliative care unit

Systematic hand searching of documents of patients diagnosed Multidisciplinary short term intervention was
effective

Environments that support integrated MDT provide improved Demographics presented Longitudinal data
collection

Standardised data collection tools Collaborative MDT/Palliative care services provide improved
continuity of management in

    palliative care services        with PSP or CBD who 

attend outpatient clinic

Pharmacological and nonpharmacological
interventions recorded

38 PSP
3 CBD

Data collected over 6 ½ years

Limited patient numbers pose
difficulties with sustainability and financial support functional outcomes

Inclusion of palliativemore holistic model with better outcomes used

Limitations: Retrospective design

Small sample size

Restricted data collection which did not reflect different settings for care rare Parkinson’s
syndromes

Preservation of long term
function

Early intervention

7 Eggers et al. 2018 To assess if patient-centred integrated healthcare improves the
quality of life of patients with Parkinson’s RCT Cologne, Germany

Eligibility screening- clear
inclusion/exclusion
criteria

300 participants

Data collection over 3 ½ years

Equal split between treatment and control groups Integrated care improved patient outcomes in comparison to traditional
outpatient services

Motor and non-motor scores improved in the
intervention group

Improved MDT collaboration

Need to establish integrated support no clear conclusions as to Research staff performed
randomisation

Valid data collection tools
used

Limitations:

Selection biasneurologist who was familiar with
the patients
Patient
empowerment

Integrated care

MDT support

Focused MDT intervention versus standard outpatient treatment

Validated data collection tools used location- home/hospital

Findings not conclusive as interventions were not performed by the same
therapies

Barriers identified included cost constraints and sustainability Generalisability restricted – differing healthcare
systems

High drop-out
rate

Therapists were not included as regular team members in consultations
8 Calvert et al. 2013 To evaluate the health related quality of life and access to supportive care in patients with rare long term neurological conditions Cross-sectional survey UK

266 participants (56 specialist clinics, 210 through charities and
support networks)

Have a rare long term
neurological condition

Completion of an online or paper based survey

Questions on social care, secondary care, consultations and health-related quality of life. 40% of people with PSP, MSA, MND and HD had access to a care coordinator. Despite this there were significant reductions in health
related quality of life in
these groups

Symptoms experienced were severe but access to services was poor suggesting their needs require a higher level of professional input.

MDT involvement was not
consistent
Validated tools
used

Demographics
clearly presented

Limitations:

Non-randomised sample

Large portion of patients recruited via the charitable organisationslikely bias being more motivated to take part.
Increased access to MDT support is linked with improved health-care
quality of life

People with rare neurological conditions require coordinated care.

 It was identified that carer views needed to be included as many patients 

are supported solely by
them

Suggested further
research was needed

 No disease rating scales usedunable to assess severity of 

disease

No clear indication of current MDT input for comparisons to be made on what was perceived as needed for support
9 Prizer and
Browner. 2012 To establish the effectiveness of integrated care models in managing Parkinson’s syndromes Systematic review 2 studies found on literature search. No available literature directly related to interdisciplinary care in
Parkinson’s syndromes. Comparable studies used which related to short-term multidisciplinary team management within an outpatient department Statistically significant
improvements seen from baseline (both used health
related quality of life measures HRQoL)

Follow-up review performed directly after the period of intervention in both studies therefore unable to conclude if the effects of treatment were sustained

Outpatient
multidisciplinary models deemed easier to implement Limitations:

No inclusion or exclusion criteria included

Lack of available evidence-only 2 studies included as a result of the
search

No clear search parameters
identified

 Streaming of care 

MDT support valuable in improving
HRQoL

Education

Educational components were considered an essential component.

Further studies warranted but recognition that this may be difficult due to:

Disease duration
Progression
Variability of symptoms
Standardising treatments

Inconsistencies in treatment

Weak evidence
10 Johnston and Chu. 2010 To determine the short and long term effectiveness of outpatient multidisciplinary care programs for people with Parkinson’s syndromes Systematic review 4 studies included-2 of the studies involved short term outcomes the remaining 2 looked at longer term outcomes over 4-6 months Demographics were
similar for all studies

Inconsistent reporting of medication cycles
throughout all studies

Measuring scales and outcomes used lacked cohesiveness

2 longer term studies used gait as an outcome measure-one study showed no significant 2 independent reviewers used to screen the studies Inclusion and exclusion criteria
clearly stated

Limitations:

Limited studies

2 of the studies were old and sample size was Outpatient MDT effective

Follow up
needed

Cohesiveness

                change the other showed a trend towards improvement (8 sessions 2 per week x 4 weeks no change-1 day 6 hours per week for 6 weeks TMW 

20.1 secs decreased to 9.4
secs)Mean values used

2 Short term studies showed MDT input had impacted positively on gait, speed and stride length (13 x 2 hour sessions >gait, stride speed-1 day of 6 hour sessions over 6 weeks TMW 14.67 secs to 1.66
secs) Mean values used

Common measure for depression used-no
consistency in results

Follow up monitoring is
essential
small
11 Monticone et al. 2015 To evaluate the effects of an inpatient MDT programme on ADL’s and QoL for people with RCT Lissone-Italy

Rehabilitation unit

Computer generated randomisation. Principle Improved functional status in experimental group. 51% increase in BBS score (falls risk) showing reduction for falls risk. Unclear trend in Clear inclusion and exclusion criteria.

Demographics
clearly defined. Focused MDT intervention improves functional ability.

    complex PD.         investigator and statistician blinded to treatment. 

70 participants. Equal split. All complex PD.

30-90 minute MDT intervention over 8 weeks. Experimental group received the addition of education and psychologist support.

Intervention delivered to groups post medication administration. control (20% increase with 17% decline).

Improvement maintained 1 year post intervention for experimental group.

Addition of psychologist and education for experimental group deemed to attribute to this.

Validated tools used.

Computer randomisation and blinding of principle investigator and statistician.

Limitations

Participants modified the programme
during the 1 year post period (skewing of results possible).

Medication administration more stringently monitored possibly contributing to functional improvement.

Financial support of 20,000 Euros by Italian Education and psychology input.

                    Healthcare. ? 

lacks transferability.
12 van der Marck et al. 2013 To establish if an
MDT/specialist team approach offers better outcomes than stand alone care by a neurologist. RCT Ontario-Canada

Centre for movement
disorders

Computer generated randomisation.

Equal split 1:1

100 participants (51 to intervention and 49 to control).

Analysis over an 8 month period.

Control group received
3 contacts with neurologist only. Intervention group were able to access PD nurse, social worker and specialist medical support regularly. Improvements noted in intervention group with PDQ-39 (3.4 point improvement) and UPDRS (4 point improvement).

Increased access to support noted to be significant with PD nurse receiving the most contacts (86%) social worker (69%) specialist (59%). Most PD nurse contacts via telephone.

Comparison made against only 3 contacts with the neurologist.

 Inclusion and exclusion criteria clearly described. 

Validated tools used.

Demographics clearly presented.

Limitations

Participants in early disease stage may lack transferability.

Consideration as to the meaning of
MDT approach ( No
physiotherapist, OT , SALT representation) Increased access to MDT support is linked with improved health-care quality of life.

Continuous interaction.

13 Rooney et al. 2015 To determine if a centralised MDT setting improves outcomes Retrospective analysis Republic of Ireland (ROI) and Northern Ireland
(NI).

Data extracted from the Survival improvements noted (p<0.001) with MDT intervention compared to stand alone community worker. Demographics clearly presented.

Large sample.
MDT support improves outcomes.

Single point of

    compared to a stand alone community 

specialist support worker. population based ALS registers between January 2005 and December 2010.

Comparisons made within the two healthcare systems between those attending an MDT centralised clinic and receiving stand alone community specialist support worker input.

719 total cases included.
Complex decision-making from multiple practitioners considered as being the reason for improvement.

More consistent intervention within MDT clinics seen as providing the most effective support. 5 year longitudinal study made for greater data analysis.

Limitations

ROI MDT clinic noted younger onset attendees.

Differences noted between ROI and NI MDT clinic approaches.

In the ROI clinic the impact of individual MDT disciplines could not be quantified.

Precise advantage of MDT input could not be established only hypothesised.

 access. 

Cohesiveness.
14 Trend et al. 2002 To evaluate the short-term
effectiveness of an MDT ObservationalPre-post test study. UK

Rehabilitation centre.
Improvements noted across all domains both physical and
psychological. People with Validated tools used.

To reduce bias MDT support improves both physical and psychological

    programme for people with PD        118 participants. 

Majority (101) recruited from the neurology clinic, (12) self referred
and (5) from geriatricians.

Attended one day per week for six weeks receiving MDT input (physiotherapy, OT, SALT and PD nurse specialist).

Comparison between baseline start of the
programme and week six.

 complex disease gained more from treatment. 

95.4% agreed knowledge and understanding of PD had improved.

Recognised that multiple
professional’ best suited to manage complex conditions. patients and therapists did not have access to baseline scores.

Demographics
and results clearly presented.

Limitations

No control group…..placebo effect.

Element of self reporting with assessments…Risk of bias.

One off programme with no follow up so difficult to gauge long term effects.

Further research needed. health.

Education and knowledge.
15 Gage and Storey 2004 To review the
effectiveness of
MDT
interventions for people with Systematic review 44 studies included within 51 papers. Range of MDT interventions delivered in clinical setting or patient home. Majority of the interventions delivered as single therapy.

Consistent age range 2 independent reviewers used to screen the studies Inclusion and exclusion criteria MDT integrated care improves both physical and psychological
PD and future research needs. identified.

Only 1 study involved a full MDT intervention service.

25 studies related to
physiotherapy input

10 studies related to SALT input

4 studies related to OT

3 involved psychological intervention

1 involved education.

2 studies identified as providing the most robust evidence related to the use of validated tools, follow up post
intervention and utilised a larger cohort of participants. clearly stated

Limitations

Limited studies related to MDT integrated care (only 1 found as incorporating all MDT disciplines)

The majority of studies only provided a follow up review post treatment. Unable to quantify the effects of MDT input over a longer term. function.

Follow up needed.

Sustainability.

Appendix 5
Stage Hoehn and Yahr Scale Modified Hoehn and Yahr Scale
1 Unilateral involvement only usually with minimal or no functional disability Unilateral involvement only
1.5 – Unilateral and axial involvement
2 Bilateral or midline involvement without impairment of balance Bilateral involvement without impairment of balance
2.5 – Mild bilateral disease with recovery on pull test
3 Bilateral disease: mild to moderate disability with impaired postural reflexes; physically independent Mild to moderate bilateral disease; some postural instability; physically independent
4 Severely disabling disease; still able to walk or stand unassisted Severe disability; still able to walk or stand unassisted
5 Confinement to bed or wheelchair unless aided Wheelchair bound or bedridden unless aided

Original Hoehn and Yahr Scale (1967)
Modified Hoehn and Yahr scale (Goetz et al 2004)

Appendix 6
Unified Parkinson’s Disease Rating Scale

III. Motor Examination
Speech
0= Normal.
1 = Slight loss of expression, diction and/or volume.
2 = Monotone, slurred but understandable; moderately impaired.
3 = Marked impairment, difficult to understand.
4 = Unintelligible.
Facial Expression 0= Normal.
1 = Minimal hypomimia, could be normal “Poker Face.”
2 = Slight but definitely abnormal diminution offacial expression
3 = Moderate hypomimia; lips parted some ofthe time.
4 = Masked or fixed facies with severe or complete loss of facial expression; lips parted 1/4 inch or more.
Tremor at Rest (head, upper and lower extremities) 0= Absent.
1 = Slight and infrequently present.
2 = Mild in amplitude and persistent. Or moderate in amplitude, but only intermittently present.
3 = Moderate in amplitude and present most of the time.
4 = Marked in amplitude and present most of the time.
Action or Postural Tremor of Hands 0= Absent.
1 = Slight; present with action.
2 = Moderate in amplitude, present with action.
3 = Moderate in amplitude with posture holding as well as action.
4 = Marked in amplitude; interferes with feeding. Rigidity (judged on passive movement of major joints with patient relaxed in sitting position. Cogwheeling to be ignored.) 0= Absent.
1 = Slight or detectable only when activated by mirror or other movements.
2 = Mild to moderate.
3 = Marked, but full range of motion easily achieved.
4 = Severe, range of motion achieved with difficulty.
Finger Taps (Patient taps thumb with index finger in rapid succession.) 0= Normal.
1 = Mild slowing and/or reduction in amplitude.
2 = Moderately impaired. Definite and early fatiguing.
May have occasional arrests in movement.
3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement.
4 = Can barely perform the task.
Hand Movements (Patient opens and closes hands in rapid succesion.) 0= Normal.
1 = Mild slowing and/or reduction in amplitude.
2 = Moderately impaired. Definite and early fatiguing.
May have occasional arrests in movement.
3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement.
4 = Can barely perform the task.
Rapid Alternating Movements of Hands
(Pronation-supination movements of hands, vertically and horizontally, with as large an amplitude as possible, both hands simultaneously.) 0= Normal.
1 = Mild slowing and/or reduction in amplitude.
2 = Moderately impaired. Definite and early fatiguing.
May have occasional arrests in movement.
3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement. 4 = Can barely perform the task.

Unified Parkinson’s Disease Rating Scale

Leg Agility (Patient taps heel on the ground in rapid succession picking up entire leg. Amplitude should be at least 3 inches.) 0= Normal.
1 = Mild slowing and/or reduction in amplitude.
2 = Moderately impaired. Definite and early fatiguing. May have occasional arrests in movement.
3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement. 4 = Can barely perform the task.
Arising from Chair (Patient attempts to rise from a straightbacked chair, with arms folded across chest.) 0= Normal.
1 = Slow; or may need more than one attempt.
2 = Pushes self up from arms of seat.
3 = Tends to fall back and may have to try more than one time, but can get up without help. 4 = Unable to arise without help.
Posture o = Normal erect.
1 = Not quite erect, slightly stooped posture; could be normal for older person.
2 = Moderately stooped posture, definitely abnormal; can be slightly leaning to one side.
3 = Severely stooped posture with kyphosis; can be moderately leaning to one side.
4 = Marked flexion with extreme abnormality of posture.
Gait
0= Normal.
1 = Walks slowly, may shuffle with short steps, but no festination (hastening steps) or propulsion. 2 = Walks with difficulty, but requires little or no assistance; may have some festination, short steps, or propulsion.
3 = Severe disturbance of gait, requiring assistance. 4 = Cannot walk at all, even with assistance.

Postural Stability (Response to sudden, strong posterior displacement produced by pull on shoulders while patient erect with eyes open and feet slightly apart.
Patient is prepared.) 0= Normal.
1 = Retropulsion, but recovers unaided.
2 = Absence of postural response; would fall if not caught by examiner.
3 = Very unstable, tends to lose balance spontaneously. 4 = Unable to stand without assistance.
Body Bradykinesia and Hypokinesia (Combining slowness, hesitancy, decreased arm swing, small amplitude, and poverty of movement in general.) 0= None.
1 = Minimal slowness, giving movement a deliberate character; could be normal for some persons. Possibly reduced amplitude.
2 = Mild degree of slowness and poverty of movement which is definitely abnormal. Alternatively, some reduced amplitude.
3 = Moderate slowness, poverty or small amplitude of movement.
4 = Marked slowness, poverty or small amplitude of movement.

Fahn et al (1987)

Appendix 7

Scoping exercise Date: 22/10/2018
Domains Location A
YES NO Location B
YES NO
Access
• Parking close to entrance
• Parking restrictions in operation
• Wheelchair accessible
• Steps
• Ramp
• Automatic doors
• Lift







Facilities
• Number of toilets
• Wheelchair accessible
toilets
• Hoist /stedy accessible
toilets
• Handrails
• Wheelchair accessible waiting area
• Food and drink
available
• Special dietary requirements can be catered for
• Wheelchair accessible physiotherapy gym
• Wheelchair accessible OT area
• Wheelchair accessible
SALT room
• Number of rooms with a bed/couch
• Number of
consultation rooms • Treatment room
• Waiting/communal
area
8


9

6



2


2

2


Environmental Flooring:
• Rubber flooring
• Flat
• Damage visible
• Trip Hazard
• Patterned





Space:
• Obstacles…pillars
• Number of sinks in the
clinical area
• Width of corridors can accommodate hoist/stedy
• Waiting area can accommodate hoist/stedy
• MDT clinical spaces can accommodate hoist/stedy
• Consultation rooms can accommodate hoist/stedy
• Hand rails
• Clear signage
• Bright lighting
• Good ventilation
• Number of emergency
exits
• MDM meeting room

10




4



4

X1

2


Resources
• Computer access
• Information literature
• Availability for
PowerPoint
• Communal waiting area can accommodate
group teaching
sessions
• Information boards
• Telephones
• Availability of specialised gym equipment






Limited

Additional Facilities
• Relaxation room
• Adapted kitchen area
• Adapted bedroom area
• Teaching room
• On site X-Ray
• On-site Pharmacy
• Access to emergency services…A+E/MEAU




 3 days a week



Appendix 8

From: Anna Jones [mailto:JonesA23@cardiff.ac.uk] Sent: 27 February 2020 08:31 To:
Subject: WBP NRT 079 Dissertation – R&D Approval

Dear Tracy

Thank you for supplying the information relating to your workbased project. Please insert this email into your appendix as confirmation that the project meets with the service improvement/ evaluation criteria for your respective health board/ NHS trust.

Please do not include your proposal or any identifiable information in your project.

With thanks and good luck with your project.

Kind regards

Anna

Dr. Anna Jones
Senior Lecturer
Interim Director of Learning & Teaching (PGT) and CPD

Please note that I do not expect a response to this email outside of your normal working hours

School of Healthcare Sciences
College of Biomedical and Life Sciences

Cofion cynnes

Anna

Dr. Anna Jones
Uwch Ddarlithydd
Cyfarwyddwr Dros Dro Dysgu ac Addysgu (OlRaddedig) a DPP

Nid wyf yn disgwyl ymateb i’r ebost hwn y tu allan i’ch oriau gwaith arferol

Ysgol y Gwyddorau Gofal Iechyd
Coleg y Gwyddorau Biofeddygol a Bywyd

Prifysgol Caerdydd

Cardiff University
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Heath Park, Cardiff,CF144XN

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Email: jonesa23@cardiff.ac.uk
Online:www.cardiff.ac.uk/
Twitter: @CUHealthSci

Mae Prifysgol Caerdydd yn elusen gofrestredig. Rhif 1136855
Cardiff University is a registered charity. No 1136855

Yn falch o fod ymhlith y 10 prifysgol orau yn y DU a’r 100 prifysgol orau yn y byd. Y Brifysgol orau yng Nghymru 2018

Proud to be a top 10 UK and world top 100 university. Welsh University of the Year 2018

10 Orau/Top 10, 100 Orau/Top100: Academic Ranking of World Universities 2017 The Times/The Sunday Times Good University Guide 2018

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Appendix 9
Mind Map

Appendix 10
Xxxxxxxxx REHABILITATION DAY HOSPITAL

Xxxxxx University Health Board

                                       Tel. No.              
                     Fax No              

Dr xxxxxxx : Physician Ref:
: Co-ordinators
The xxxxxxxxx Parkinson’s service has arranged a follow-up appointment at our complex/atypical Parkinson’s multidisciplinary clinic. This is a collaborative initiative organised by the Parkinson’s service and xxxxxxxxx Rehabilitation Day Hospital, aimed to meet the needs of people with Complex Parkinson’s conditions, and their carers.
We would be grateful if you could attend this session on:
The aim of this session is to provide multidisciplinary review as well as information and support. This will be delivered by professionals in their speciality providing an opportunity to engage with our service.
Please contact us to discuss transport arrangements and special requirements.
We look forward to meeting you on the day.

PARKINSON’S TEAM
Xxxxxxxx REHABILITATION DAY HOSPITAL

Appendix 11

Appendix 12
Tracking/audit Sheet (adapted from PUKAT 2017)
Use this to record your patient cases

Date:
Date referral sent:
Date referral received:
Referral received within 6 weeks of diagnosis Yes No

Descriptive Data
1.1 Patient identifier

1.2 Gender • Male
• Female
• Other/patient prefers not to say
1.3 Year of birth
1.4 Contact details

1.5 Date of diagnosis
1.6 Confirmed diagnosis • MSA
• PSP
• CBD
• DLB
1.7 Parkinson’s phase Hoehn and Yahr (1967) stage
1.8 Living Alone • Yes
• No
• No, at a Residential home
• No, at a nursing home
1.9 Is there evidence of a documented Parkinson’s and related medication reconciliation at each visit? •
• Yes No
Specialist review
2.0 Prior to the current appointment, has the patient been reviewed by a specialist within the
last year? (Doctor or
PDNS) •
• Yes No

2.1 Time since most recent medical review (PDNS/doctor) •

• Less than 6 months
6-12 months
More than a year
• More than 2 years
• Never
2.3 Reviewed by doctor/PDNS during attendance •
• Yes No
2.4 Vital sign recordings • B/P
• Weight
• Pulse
• Temp
2.5 PDQ-39 Score
Multidisciplinary Input
3.1 Evidence of PDNS assessment/input •
• Yes No
• No, but declined
3.2 Evidence of physiotherapy assessment/input •

• Yes
No
No, but declined
• No, but clear documentation no therapy required
• No, but no achievable physiotherapy goals
3.3 Evidence of
Occupational therapy assessment/input •

• Yes
No
No, but declined
• No, but clear documentation no therapy required
• No, but no achievable occupational therapy goals
3.4 Evidence of
Speech and language assessment/input •

• Yes
No
No, but declined
• No, but clear documentation no therapy required
• No, but no achievable speech and language goals

Glossary
Alpha-synuclein A human protein that is abundant in the brain which is mainly found at the tips of neurones in specialised structures called presynaptic terminals.
Amyotrophic lateral sclerosis (ALS) Also referred to as motor neurone disease (MND) or Lou Gehrig’s disease causes death of neurones controlling voluntary muscles.
Autonomic changes An effect on the autonomic nervous system which can impact on the function of automatic processes including breathing, digestion, blood pressure, heart rate, urination.
Basal ganglia A group of structures found deep within the cerebral hemispheres of the human brain which main role is the control of movement.
Camptocormia Also known as bent spine syndrome (BSS) it is an abnormal spinal flexion with bending forward of the lower joints of the spine in a standing position.
Cerebellum A structure within the human brain which coordinates voluntary movements resulting in smooth and balanced muscular activity.
Cerebral cortex The outer wrinkliest layer that surrounds the brain that consists of tightly packed neurons.
Cueing A sensory prompt using verbal and visual stimulus to assist with movement.
DaT scan Dopamine Transporter scan is an imaging technique which uses an injected radioactive agent which is tracked under imaging to visualise dopamine transporter levels in the brain.
Dopaminergic neurons A cell group in the central nervous system (CNS) that makes the neurotransmitter dopamine.
Echolalia The meaningless repetition of speech.
Frontoparietal Refers to both frontal and parietal bones of the skull.
Magnetic Resonance Imaging (MRI) A medical imaging technique used in radiology to form pictures of the anatomy and the physiological processes of the body.
Normal pressure hydrocephalus (NPH) An accumulation of cerebrospinal fluid (CSF) that causes ventricles in the brain to become enlarged.
Palilalia A speech disorder causing involuntary repetition of words, phrases or sentences.
Pons A major division of the brainstem which is primarily responsible for sleep, respiration, swallowing, bladder control, hearing, equilibrium, taste, eye movement, facial expressions, facial sensation and posture.
Pull test Also referred to as Retropulsion Test it is a commonly used clinical assessment of postural instability. It evaluates the ability of a person to recover from a backward pull on the shoulders.
Putamen A large structure located within the brain which is involved in the complex feedback loop that prepares and aids in movement of the limbs.
Substantia nigra A relatively small structure present within the midbrain which plays an important role in the regulation of movements.
Tauopathy A term which refers to the cluster of tau proteins also referred to as neurofibrillary tangles which are abundant in the neurons of the CNS.
Tau proteins A group of six highly soluble protein isoforms (similar to each other and perform similar roles) that are primarily responsible for maintaining the stability of microtubules (tubular structures) in axons (long threadlike parts of a nerve cell).
Vascular Parkinsonism A condition which presents with the clinical features of Parkinson’s but is the result of cerebrovascular disease causing small strokes.
Vertical saccades A quick simultaneous movement of both eyes between two or more fixed points in the same direction.

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