Parkinson’s Hub: An integrated pathway for patients with Parkinson’s and Frailty
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Dr Tom Mace with Dr Peter Fletcher in Sheffield, November 2019
An integrated MDT-led pathway for patients with Parkinson’s and related disorders has been commissioned by Hull CCG. Its delivery has relied on many colleagues from different agencies working together. With a move towards integrated care, there has been many difficulties as systems were not traditionally designed for this new way of working. However, many of these have been overcome with enthusiasm and teamwork. This report briefly outlines the model of this innovative integrated pathway. Evaluation and deeper learning will be published in due course.
Locally, our movement disorders service follows a traditional model and involves new diagnoses made by a consultant physician with an interest in Movement Disorders and once established, regular follow-up by our Parkinson’s disease nurse specialists (PDNS) (usually six monthly) with potential opportunity for earlier review by PDNS or physician if required. Follow-up appointment times are 15 minutes with the physician or 30 minutes with a PDNS. Where referral to other allied healthcare professionals (AHPs) occurs, it is on an ad hoc basis with no meeting of the MDT.
The NHS Long Term Plan (2019) encourages a move to more holistic, MDT-led integrated care in the community, closer to where patients live [A]. Furthermore, it has placed a focus on frailty. Frailty has multiple different definitions, however, Fried et al highlighted a consensus definition as a “physiological state of increased vulnerability to stressors from decreased physiological reserves, and even, dysregulation of multiple physiological systems” [B]. Non-frail patients can usually expect to return to their baseline once they recover from the stressor. However, those who are frail or pre-frail are likely to not return to their baseline and live with a higher level of dependence or disability [C].
The association between Parkinson’s disease and frailty is interesting in the fact that it leaves the body’s physiological systems and mind vulnerable to stressors and is highly associated with frailty syndromes such as falls, cognitive dysfunction, immobility and incontinence. Parkinson’s may directly cause or co-exist and compound frailty. The Rockwood Clinical Frailty Scale is a generally well accepted way of classifying non-frail and frail states, taking into account it is a spectrum of a physiological state and not binary. Kempster describes that although younger patients usually have a more stable and prolonged maintenance phase, once events such as visual hallucinations, falls and cognitive dysfunction occur, the prognosis is relatively similar regardless of age [D]. The need for a more holistic approach and a sensitivity to the patient’s own goals is clearly required when “frailty syndromes” start to have a significant effect on quality of life and health.
Locally, a push towards providing holistic care for patients living with frailty in the community by Hull CCG has resulted in the opening of the Jean Bishop Integrated Care Centre. Here, Comprehensive Geriatric Assessments (CGA) are performed on patients invited for review after screening using the electronic frailty index algorithm. CGA has been better studied as an in-patient tool and has been shown to demonstrate an increase in patients who are living at home and a decrease in those admitted to a nursing home compared to routine medical care [E]. In the outpatient setting, the outcomes are less well understood but one study found it “may delay the progression of frailty and may contribute to the improvement of frail patients in older persons with multi-morbidity” [F].
The aims of the Parkinson’s Hub have been developed by meeting with patients living with Parkinson’s (PwP) and their carers about their current concerns which include:
- More information / education about their disease
- Quicker access to healthcare professionals with an interest in PD
- Expertise from their healthcare professionals
- Quicker medication changes
Further, there are overarching goals of any MDT-led community frailty service identified by consideration of CGA, Parkinsons UK National Audit and within our own team, which include:
- Improve quality of life
- Responsive service
- Reduction in non-elective hospital admissions
- Reduction in falls and fragility fractures
- Reduction in pain
- Rationalising of polypharmacy
- Advanced care planning
- Reduction in permanent care home admission
- Improvement in respecting a patient’s preferred place of death
- Improved links with mental health services
The aim of the new service is to achieve these aims by utilising and increasing the current healthcare professional resource to perform Comprehensive Parkinson’s Assessments (CPA) and follow-up management plans.
Comprehensive Parkinson’s Assessments
CPA is very closely related to CGA advocated by the British Geriatric Society [G]. Further, it takes into account themes from the NHS RightCare Progressive Neurological Conditions Toolkit [H], the Non-motor Symptoms Questionnaire [I] and the Parkinson’s UK National Audit [J].
Overall, the themes include:
- Frailty, Hoehn & Yahr and observations
- General Health
- Nutrition, swallowing, speech issues and oral health
- Cognition, mood, neuropsychiatric, sleep and ICD assessments
- Continence and bowel function
- Movement, motor-symptoms and falls
- Bone health
- Function and pain
- Medication and polypharmacy review
- Environmental and carer requirements
- Future care plans and wishes
Integration & Personnel
With the new service, a team made up of current and new healthcare professionals has been formed and works seamlessly as an extension of the current team at Hull University Teaching Hospitals. The team is made up of colleagues with various different employers working within a structure provided by multiple agencies but all with one common goal: to provide great care.
Hull CCG has significantly increased the resource into the team. The personnel now include:
- a consultant geriatrician with an interest in Movement Disorders to run 2 morning clinics (2 x 4 hours) per week.
- an additional PDNS (1 WTE) who is currently working a part-time 27.5 hours per week.
- a consultant neurologist to attend the monthly 2 hour Grand MDT to offer advice and second opinions on complex cases whilst being actively involved in the education of the team.
- a Band 6 physiotherapist, on a rotational basis, linked with other rotations including ‘frailty’.
- They will work under the supervision of an experienced Band 7 Neurophysiotherapist who has a strong interest in Parkinson’s disease. (There may be an opportunity to support a Band 6 Physiotherapist to progress to a Band 7 permanent post.)
- an occupational therapist Band 6 for 2 days per week.
- Currently, this is an OT from the general frailty team, however, it is expected one will develop a Parkinson’s specialist interest and they will be supported to do this.
- a Band 4 therapy assistant to perform the initial domiciliary visit and support the physiotherapist and occupational therapist in their roles and assist group activities.
- a full-time MDT coordinator role, split between 2 colleagues,to ensure cross-cover.
- They are the patient’s single point of access to the service and ensure the comfort of the patient alongside the smooth running of the service.
- a Pharmacy Technician for 2 days per week
Additionally, on the clinic day, there is input from pharmacy technicians, clinical support worker, carer support agency workers and Parkinson’s UK (when capacity allows). Throughout the assessment, there is seamless working and data sharing with the local authority’s social services team.
The diagrammatic model of the service can be seen in Appendix A.
All patients referred to the service have an established diagnosis of Parkinson’s disease or a related disorder. They are referred to the service by PDNSs, neurologists or geriatricians. Other healthcare professionals wanting to refer a patient to the service will do so by discussing with the lead clinician.
The referral criteria is loose. It is those PwP deemed to have moderate to severe frailty and/or geriatric syndromes caused by their Parkinson’s and are felt to likely benefit from the service.
Once referred and after appropriate consent from the patient, the MDT coordinator will contact the patient via telephone to explain the service and organise a mutually beneficial time for the therapy assistant to visit the patient in their own home.
The assessment begins at the patient’s own home by the TA. They will assess the patient’s own environment and assess where particular difficulties may be occurring, such as causes of freezing or the use of utensils. Further, they will ensure the patient has had an opportunity to consider the Non-Motor Symptoms Questionnaire [I] which will go on to guide the doctor part of the assessment. The TA will work to the Trusted Assessor model so that Social Services and other therapists will accept referrals based on the criteria. If a patient is deemed to be in ‘crisis’, social services offer a 2-24 hour response time for a home visit. Further, they can trigger an Occupational Therapy review prior to the clinic review.
Care Centre assessment:
The patient will then attend the Jean Bishop Integrated Care Centre within 2 weeks (usually within 1 week). This starts with being welcomed by the MDT coordinator who will orientate the patient, ensure the patient has access to complimentary drinks and snacks and understands the programme for the day. They will be taken to the assessment room where they will have lying and standing BP checks, weight, height and skin assessments. Here, the pharmacy technician will review the medication and discuss concordance and difficulties with dexterity and timings. Skin check is performed by the PDNS where required.
The patient is then reviewed by the consultant physician. This is an hour long discussion where the health aspect of the Comprehensive Parkinson’s Assessment is performed including Advanced Care Planning. The conversation is heavily guided by the symptoms and main goals highlighted by the patient using the non-motor Symptoms questionnaire [I] and issues found by the Therapy Assistant.
The patient then visits the physiotherapist whose assessments include the Lindop Scale [K]. A therapy programme is prescribed for the patient and follow up agreed at the patient’s own home or for group exercises.
The patient is given complimentary drinks and lunch at the end of the assessment. A mini-MDT is undertaken at the end of the clinic to discuss any concerns and agree the patient’s individualised plan. A stability classification is given to each patient to state whether the patient is ‘Stable’, ‘At-risk’ or ‘Pre-crisis/Crisis’. Those deemed as the latter will be discussed in the monthly Grand MDT which has attendance by the neurologists, Social Services, care home CPN and any other parties involved in the patient’s care. All individualised plans will be sent that day, or where appropriate on the next working day to the patient, their GP and the local hospital.
Follow-up consists of alternate appointments between the PDNS and the consultant physician every 4 ½ months until 18 months is reached, where a further Comprehensive Parkinson’s Assessment occurs. There is capacity for some of these appointments to be telephone-based if the patient prefers. Further ad hoc appointments are available for rapid assessment or more intense follow-up for those undergoing significant treatment changes or deemed to be ‘at-risk’ or in ‘crisis’. Once within the service, patients access the MDT coordinator as their single point of contact. They will highlight concerns/questions in the mini or Grand MDT and have access to all healthcare professionals with an opportunity to offer early appointments.
More ad hoc follow-up is often required to support the number of changes made after CPA.
There is opportunity for rapid access to the model for those that a referring healthcare professional feels is at risk of hospital admission or entering 24 hour care.
There will be close working with the local care home frailty team with both data sharing and open access to MDTs to support those who are unable to attend the usual model of care. Links are being created to develop a palliative care arm with Dove House Hospice and the District Nursing Network to support those who have decided to decline further hospital admissions and would rather accept risk and be cared for in the community regardless of outcomes.
Information Technology and Data Sharing
Locally, SystmOne is the main software used amongst GP practices, although some practices do use EMIS. A dataset for the group of patients has been established. Templates to frame each patient contact have been created on SystmOne with read codes used wherever possible to aid data analysis.
As the service spans multiple agencies, a thorough consent process for data sharing has been agreed. After verbal, then written patient consent, the Parkinson’s Hub requests patient records from the GP and can share these within the services including Social Services. Further, the Individualised Patient Plan can be shared with the patient, the patient’s GP and the local hospital.
During the Parkinson’s Hub induction workshop for the whole team, a service culture was identified which was:
“Be Kind, Be Helpful, Be Patient-Centred”
Feedback and Evaluation
The service welcomed its first patient on the 1st November 2019, following the home assessment on the 29th October 2019. The number of patients has been kept low initially so that learning can take place and the team can become familiar with new systems.
Using the ‘Friends and Family’ test, so far 100% of patients have stated they are “extremely likely” to recommend our service (n = 6).
Comments have included:
“Friendly, caring staff…. Explain in simple language… I cannot praise the staff too highly”
“Very informative, very thorough, staff excellent. So good don’t know how it could be improved”
The Area Development Management for Yorkshire and Humber, Parkinsons UK has stated:
“I really love the fact… that it’s a multi-disciplinary approach.”
“This is a very innovative service…”
“We look forward to working with you on this project and thank you for working with us so positively.”
Most individualised plans have between 10 and 20 goals and outcomes. It is currently too early to assess what objective impact they have.
Moving forward, there are many improvements and additions to the service to be developed. Ambitions and direction of the service include:
- Evaluate and modify the service as required.
- Rapid access Speech & Language Therapy Team
- Improving links with Mental Health services
- Delivering integrated Palliative Care with Dove House Hospice and District Nurses to patients under the Parkinson’s Hub whom have decided to not be admitted to the hospital for treatment of reversible conditions any longer.
- Share learning from the development and delivery of the Parkinson’s Hub
- Develop an outpatient Clozapine service
- Work with colleagues to develop research links with local centres
- Support an Occupational Therapist to develop an interest in Parkinson’s
Thanks and Acknowledgments
This service is a product of many members of different agencies working in collaboration. The service is indebted to:
- Hull CCG including Emma Latimer Chief Officer, Hull CCG
- Erica Daley, Director of Integrated Commissioning, Hull CCG
- Lesley Windass, Head of Transformation, Hull CCG
- Lucy Pitt & Chris Emmerson, Programme Support Leads, Hull CCG
- Dr Alec Ming, Movement Disorders Lead at Hull University Teaching Hospitals
- Lesley Elrick, Business Manager, Neurology, Hull University Teaching Hospitals
- Jane Curran, Band 7 Neurophysiotherapist, Hull University Teaching Hospitals
- Tracey Woodrow, Operations Manager and Colleagues at City Health Care Partnership
- Drs Anna Folwell & Dan Harman, ICC Care Home and Core Frailty Clinical Leads and Consultant Geriatricians at Hull University Teaching Hospitals
- Ian Grout, Information Systems Manager & Vikki Taylor, Project Support Manager, CHCP
- Friends & Colleagues at Hull University Teaching Hospitals, especially the Department of Medical Elderly
- Advisors, Patients and their Carers at Parkinson’s UK
- … and countless others who have offered advice and support during both its inception and delivery.
- [A] https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan/ Accessed 24/11/2019
- [B] https://academic.oup.com/biomedgerontology/article/59/3/M255/579713
- [C] https://europepmc.org/articles/pmc4098658
- [D] https://academic.oup.com/brain/article/133/6/1755/353024
- [E] https://www.cochrane.org/CD006211/EPOC_comprehensive-geriatric-assessment-older-adults-admitted-hospital
- [F] https://link.springer.com/article/10.1007%2Fs40520-018-1004-z
- [G] https://www.bgs.org.uk/sites/default/files/content/resources/files/2019-02-08/BGS%20Toolkit%20-%20FINAL%20FOR%20WEB_0.pdf
- [H] https://www.parkinsons.org.uk/sites/default/files/2019-08/NHS%20RightCare%20Progressive%20Neurological%20Toolkit%20Final.pdf
- [I] https://www.parkinsons.org.uk/professionals/resources/non-motor-symptoms-questionnaire
- [J] https://www.parkinsonsaudit.uk/
- [K] https://www.parkinsons.org.uk/sites/default/files/2017-12/lindopparkinsonsassessmentscale.pdf
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