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Transforming the care of patients with Parkinson’s disease in Cardiff

As the number of people with Parkinson's disease continues to rise, one team in Cardiff has found an innovative way to deliver care to older people.

As the number of people with Parkinson's disease continues to rise, one team in Cardiff has found an innovative way to deliver care to older people


The Cardiff Parkinson's disease team (l-r) Tracy Williams, Sandra Mahon, Amanda Wall, Liz Morgan,
Biju Mohamed and Chris Thomas

Cardiff and Vale University Health Board’s (CVUHB) Parkinson’s disease (PD) service cares for nearly 1,000 people who have the disease in Cardiff and parts of the Vale of Glamorgan in Wales. With demographic changes resulting in increases in the proportion of older people in the population, along with improvements in early recognition and diagnosis of PD, the number of people served by the clinic has doubled over the past decade.

Living longer

Better treatment of various conditions – including PD – also means that people live longer with the disease, and it follows that many more people will therefore survive into later stages. This means that the number of people with PD dementia is similarly increasing, and more people with PD will need to move into residential care and nursing homes.

As a result of their physical and cognitive frailty residents of care homes, particularly nursing homes, are often under-served by specialist services. This is because they often have difficulty in accessing services and rely on their advocates or carers to anticipate their needs, as they may not be able to communicate or express this themselves. 

Almost 1,000

people with Parkinson's disease are cared for by the Cardiff service

These changes have proved challenging in times of financial strain for NHS services so the Cardiff PD service has had to look for new and innovative ways to deliver and improve care to older adults, particularly those with complex needs including dementia. 

The PD service runs an outpatient clinic in Rookwood Hospital in Cardiff. The journey to the clinic can take up to an hour from parts of the city, and with the complexities of PD care, clinic appointments can over-run.

People with more advanced disease struggle to mobilise in clinic and those with dementia would often be accompanied by agency care staff who did not know their individual cases. As a result, a visit to clinic would often be anxiety-ridden, arduous and exhausting for frail older people with dementia.

The PD nurse specialist had traditionally seen some patients at home, undertaken on a case-by-case basis. It was thought that seeing people at home in their own environment put them at ease and meant that long ambulance journeys and long clinic waits were avoided. In addition, for those people with dementia living in nursing homes, home visits facilitated discussions with staff caring for them, enriching the consultation with more background information and allowing for a more person-centred approach to care.

In 2014, a single-handed PD nurse undertook a small pilot study of focused clinics in a few nursing homes throughout Cardiff and the Vale. Rather than people with PD attending the hospital clinic, they were seen in their nursing home accompanied by one of their familiar carers or care home nurses.

6,000

number of people living with Parkinson's disease in Wales

Source: Parkinson's Disease Society of the UK (2008)

Visits were arranged in advance so that all people with PD in one care home would be seen on one day by the PD nurse specialist. Qualitative feedback was obtained as well as quantitative data. Feedback from people with PD and care home staff was overwhelmingly positive across all domains questioned. Financial analysis also demonstrated significant cost savings because of reduced ambulance costs, agency costs and efficiencies in time-keeping that were realised by operating in this way.

Since 2015 the pilot study has evolved into routine clinical practice so that all patients living in nursing homes in the catchment area of CVUHB are now seen in PD nurse-led nursing home clinics on a six-monthly to annual basis. While the primary goal was to enhance the care of people with PD, an additional benefit has been the liberation of time in the usual clinic setting to see new referrals. 

100% satisfaction

PD nurse specialist Tracy Williams says: ‘Feedback from our recent audit of clients and staff has shown 100% satisfaction with the service. It is the client stories that have provided the most valuable responses. They report feeling more valued and able to take control having more time to express their feelings in a familiar and relaxed environment.’

The PD nursing home clinic has proved a springboard for other initiatives that complement and enhance this development, including a PD dementia clinic, the training of a PD specialist pharmacist who is now integrated in the service, and new-patient education and information sessions.

The PD service won an award for its integration of a pharmacist into the service and the nursing home clinic was highly commended at the UK Parkinson’s Excellence Network Awards this year. 

An award-winning service

Cardiff and Vale University Health Board’s nurse-led nursing home clinic achieved highly commended status at the first UK Parkinson’s Excellence Network Awards in March.

Judges, who included a panel of professionals as well as people with the condition praised the clinic, which provides support for people in nursing homes with complex PD needs, saying: ‘this service demonstrates beautifully the difference that Parkinson’s nurses make and how evaluating impact of services on patients can lead to care being delivered differently.’

The awards aim to recognise and celebrate exceptional services that make a difference to people in the UK affected by PD.

The network was established in 2015 by charity Parkinson’s UK, alongside leading clinicians, to encourage improvements in care. It aims to achieve consistent, high-quality UK services by sharing evidence, training, tools to support best practice and opportunities for collaboration. It makes sure the views and experiences of people affected by this complex, long-term neurological condition are at the forefront of service improvement.

 

Further information


Chris Thomas consultant geriatrician and physician, Cardiff and Vale University Health Board, Wales.

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