An innovative, integrated and multi-disciplinary-led community pathway for people with Parkinson’s and related disorders with co-existing frailty has been commissioned by Hull clinical commissioning group (CCG). This is part of the CCG’s strategy to address frailty within its local population, working both proactively and reactively to support patients to live well and reduce strain on the local hospital.
Kingston-Upon-Hull is a city within Yorkshire in the United Kingdom and has an estimated population of approximately 260,000.1 It is in the 5% most deprived local authorities.2 With a move towards integrated care, there have been many challenges; existing systems are not designed for this new way of working. These difficulties have been overcome by enthusiastic cross-working between the Hull CCG, Hull University Teaching Hospitals NHS Trust, City Health Care Partnership CIC and Hull Local Authority with assistance from the voluntary sector including Parkinson’s UK.
The NHS Long Term Plan (2019) encourages a move to a more holistic, multi-disciplinary team (MDT)-led integrated care in the community, closer to where patients live.3 Furthermore, it has placed a focus on frailty. Clegg et al defines frailty as:
a state of vulnerability to poor resolution of homoeostasis after a stressor event and is a consequence of cumulative decline in many physiological systems during a lifetime.4
Non-frail patients can usually expect to return to their baseline once they recover from the stressor. However, those who are frail or vulnerable to frailty are at risk of not achieving this and thus have an increased risk of developing a higher level of dependence, disability or death.5
The association between Parkinson’s and frailty is interesting in that it leaves the body’s physiological systems and mind vulnerable to stressors and is highly associated with conditions such as falls, cognitive dysfunction, immobility, incontinence and susceptibility to side effects of medications, often seen as ‘frailty syndromes’.6
Parkinson’s may directly cause or co-exist and compound frailty. The Rockwood Clinical Frailty Scale (CFS) is a useful way of classifying non-frail and frail states, viewing frailty as a spectrum of a physiological state.7 However, the effect of more advanced Parkinson’s and the variability of living with daily “on” and “off” states and response to treatment is less well understood. Kempster describes that although younger patients usually have a more prolonged maintenance phase, once events such as visual hallucinations, falls and cognitive dysfunction occur, the prognosis is similar regardless of age.8 Parkinson’s requires a holistic approach and sensitivity to the patient’s own goals throughout the disease especially when multiple frailty syndromes affect their quality of life. Hence, the referral criteria into the service is loose with no exclusion criteria, although a CFS score of 6 (moderate) onwards is used as guidance for those living with multiple ‘frailty syndromes’. There are no age restrictions.
Until recently, the existing Parkinson’s service followed a common model of diagnosis by a movement disorder Consultant and routine follow-up with a Parkinson’s disease Specialist Nurse, with referral back to the specialist when required with no MDT meeting.
A push by Hull CCG towards providing holistic care for patients living with frailty in the community has resulted in the opening of the Jean Bishop Integrated Care Centre. Comprehensive Geriatrics Assessments (CGAs) are performed on patients invited for review, after screening using the electronic frailty index algorithm. Briefly, a CGA is a diagnostic process performed by members of the multidisciplinary team, assessing: physical and mental health, socioeconomic, environmental, mobility and functional factors and a medication review, culminating in a personalised plan of interventions to address the issues raised.
As an in-patient tool, CGAs have been shown to demonstrate a decrease in those admitted to nursing homes compared to routine medical care.9 In the outpatient setting, 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”.10
The service aims are identified in Table 1; these were created following a focus group of people with Parkinson’s and their carers and through the specialist healthcare team.
A framework was developed: the ‘Comprehensive Parkinson’s Assessment’ (CPA). This is very closely influenced by and aligned with CGA which is advocated by the British Geriatric Society11 and augmented by Parkinson’s specific questions. It takes into account themes from the NHS RightCare Progressive Neurological Conditions Toolkit,12 the Non-motor Symptoms Questionnaire13 and the Parkinson’s UK National Audit.14
The core themes included can be found in Table 2. The NHS RightCare Progressive Neurological Conditions Toolkit is influential in its promotion of MDT work, signposting of Parkinson’s UK local advisors and the use of care coordinators. The Parkinson’s UK National Audit prompts questions that are Parkinson’s specific, e.g. regarding hypersalivation and psychosis.
Integration and Personnel
A team, working seamlessly as an extension of the current team at Hull University Teaching Hospitals, and comprising current and new healthcare professionals has been formed to support the new service. The team is formed of colleagues (Table 3) with various employers working within a structure provided by the aforementioned agencies, all working to a common goal: to provide great community-based care. Hull CCG has significantly increased the resource into the team. In addition to the core team, there is input from pharmacy technicians, a 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 and Dove House Hospice (where applicable).
The Parkinson’s Hub service
The service flows in three parts: a referral, an assessment in two parts, and a follow-up. This can be seen in Figures 1-3.
At the mini-MDT meeting following the clinic, each patient is given a stability classification to determine whether they are ‘Stable’, ‘At-risk’, ‘Pre-crisis/Crisis’ (defined as likely to result in hospital or 24 hour care admission) or ‘Palliative’. All individualised plans will be sent by the next working day to the patient, their General Practitioner (GP) and the local hospital. Those deemed as Pre-crisis/Crisis will be discussed in the monthly Grand MDT which has attendance by the usual MDT, with additional representation from social services, care home staff, and any other parties involved in the patient’s care.
There is close collaboration with the local care home frailty team. The palliative care pathway has been strengthened for those who have declined further hospital admissions and have chosen to be cared for within the community only and supported through the dying process. They are referred to the district nursing team who provide the majority of community palliative care. Multiple patients attend the Dove House day hospice service who also support the patient if symptoms become difficult to manage. Data is shared between the services and communication is open both ways to obtain clinical advice for all the teams mentioned above. 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 based on the CPA to frame each patient contact have been created on SystmOne with read codes used wherever possible to aid data sharing and 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.
Evaluation and next steps
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” and early feedback suggests this culture is tenable. The service welcomed its first patient on 1st November 2019, following a 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 the service (15 completed surveys). Most individualised plans have between 8 and 20 outcomes and timely follow-up on these changes has become imperative. It is currently too early to assess what objective impact they have but there is an ambition to publish outcomes of the service in due course.
Moving forward, there are many improvements and additions to the service to be developed as outlined in Table 4.
The Parkinson’s Hub service remains in its infancy but is well placed to deliver on its ambition to potentially slow the progression of frailty and lessen the deleterious effect on people with Parkinson’s and their carer’s quality of life that frailty syndromes cause. We hope that by sharing the learning of this early work we will encourage colleagues in other areas and open discussion on working in an integrated fashion across organisations and services, ensuring that people living with Parkinson’s and their carers experience joined up and timely care.
- Park N, ‘Dataset: Estimates of the population for the UK, England and Wales, Scotland and Northern Ireland’, The Office for National Statistics, June 2020
- Hull City Council, ‘Hull Public Health: Deprivation’ accessed http://www.hullcc.gov.uk/pls/hullpublichealth/deprivation.html
- National Health Service, ‘The NHS Long Term Plan’, January 2019, accessed https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan/
- Clegg A, Young J, Iliffe S, Rikkert MO, Rockwood K, ‘Seminar: Frailty in elderly people’, The Lancet, Vol 381, Is 9868, 2–8 March 2013, pps 752-762, https://doi.org/10.1016/S0140-6736(12)62167-9
- Fried LP, Tangen CM, Walston J, et al. Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci. 2001;56(3):M146-M156. https://doi:10.1093/gerona/56.3.m146
- Turner G, ‘Recognising Frailty’, Good practice guide, The British Geriatrics Society, June 2014, accessed https://www.bgs.org.uk/resources/recognising-frailty
- Rockwood K, Song X, MacKnight C, Bergman H, Hogan DB, McDowell I, Mitnitski A, ‘A global clinical measure of fitness and frailty in elderly people’, CMAJ. Aug 30, 2005; 173(5): 489–495.
- Kempster PA, O’Sullivan SS, Holton JL, Revesz T, Lees AJ, ‘Relationships between age and late progression of Parkinson’s disease: a clinico-pathological study’, Brain, Volume 133, Issue 6, June 2010, pps 1755–1762, https://doi.org/10.1093/brain/awq059
- Ellis G, Gardner M, Tsiachristas A, Langhorne P, Burke O, Harwood RH, Conroy SP, Kircher T, Somme D, Saltvedt I, Wald H, O’Neill D, Robinson D, Shepperd S, ‘Comprehensive geriatric assessment for older adults admitted to hospital’, Cochrane Review, September 2017 accessed online at https://www.cochrane.org/CD006211/EPOC_comprehensive-geriatric-assessment-older-adults-admitted-hospital
- Mazya AL, Garvin P, Ekdahl AW. Outpatient comprehensive geriatric assessment: effects on frailty and mortality in old people with multimorbidity and high health care utilization. Aging Clin Exp Res. 2019;31(4):519-525. https://doi:10.1007/s40520-018-1004-z
- The British Geriatrics Society, ‘Comprehensive Geriatric Assessment Toolkit for Primary Care Practitioners’, 2015, accessed https://www.bgs.org.uk/sites/default/files/content/resources/files/2019-02-08/BGS%20Toolkit%20-%20FINAL%20FOR%20WEB_0.pdf
- NHS RightCare, ‘Progressive Neurological Conditions Toolkit’, August 2019, accessed https://www.england.nhs.uk/rightcare/wp-content/uploads/sites/40/2019/08/progressive-neuro-toolkit.pdf
- Parkinson’s UK, ‘The non-motor symptoms (NMS) questionnaire’ accessed at https://www.parkinsons.org.uk/professionals/resources/non-motor-symptoms-questionnaire
- The UK Parkinson’s Excellence Network, ‘UK Parkinson’s Audit’ carried out each year via https://www.parkinsonsaudit.uk/ ; last reported as ‘2019 UK Parkinson’s Audit: Summary report.’
- Lindop Parkinson’s Assessment Scale, accessed via Parkinson’s UK website: https://www.parkinsons.org.uk/sites/default/files/2017-12/lindopparkinsonsassessmentscale.pdf