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Developing a Parkinson's Disease service

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Catherine Jones, BSc (Hons) Nursing Science, RGN, Dip HS.

Parkinson's Disease Specialist at Wansbeck General Hospital, Ashington, Northumberland

Parkinson's disease

Parkinson's disease
In the UK, PD appears to affect at least one in 1000 of the population (Hobson and Meara, 1999; Sutcliffe and Meara, 1995) and possibly as many as one in 600 (Mutch et al, 1986). Parkinson's Disease (PD) is a degenerative neurological condition leading to slowness of movement, difficulty initiating movement, progressive fatigue, rigidity and tremor (Quinn, 1995; and see Box 1).

In order to maintain an independent lifestyle, people with PD and their carers need information in various forms, and support on how to manage their symptoms. Access to a specialist PD team is essential to provide them with such care (McMahon and Thomas, 1998).

Chronic illness is increasingly recognised as the dominant part of health-care expenditure (DH, 1999). There is evidence that services for people with PD are often unstructured and unco-ordinated (PDS, 1998), and that lack of support or of specialist multidisciplinary service intervention can lead to an increased risk of institutionalisation. There is mounting evidence that a properly planned and commissioned service can serve these patients with greater efficiency (Parkinson's Disease Society, 1998).

The Parkinson's Disease nurse specialist (PDNS) plays a pivotal role in providing this co-ordinated service (MacMahon, 1990, 1999; RCN, 1999; Jarman, 2002). Key functions of the PDNS role include patient education, counselling, providing information, medication instruction and liaison with other members of the health-care team (Calne, 1994).

Specialist services
The Parkinson's Disease Society (1998) identified the need for dedicated services for people with PD and their carers on the grounds that:

- PD is a devastating disease

- It is costly to all health- and social-care agencies, as well as to individuals

- Treatment has advanced greatly, especially in the past 30 years, since the advent of levodopa and other neuropharmacological advances.

In 1997 the European Parkinson's Disease Association and the World Health Organisation produced a charter outlining the rights of people with PD (see policy box alongside).

The North Tyneside PD service was established in 1995 to provide a service for a predominantly urban population of 190,000. It consisted of a consultant with a special interest in PD running a monthly clinic with support from a part-time PDNS and other members of the multidisciplinary team. Within one year this had rapidly expanded, and a weekly clinic was required.

In 1998, North Tyneside Trust, Cheviot and Wansbeck Trust and Northumberland Care Trust merged to form Northumbria Healthcare NHS Trust. There were four former primary care groups (now one merged care trust) with two general hospitals and seven community hospitals. Prevalence figures suggest that there were 400-500 patients with PD in the 300,000 population of Northumberland.

However, there was no dedicated service for people with PD and their carers in this area, leading to inequity in service provision across the trust. Consequently, the North Tyneside PD service started to receive referrals from GPs for patients with PD in the Northumberland area. Because of a lack of resources, patients could be seen only as a 'one-off' assessment by the consultant to help with specific problems, and we were unable to provide a follow-up service that included support from a PDNS. It was identified, therefore, that there was a need for a trust-wide PD service. However, establishing such a service would be challenging because of the size and geography of Northumberland.

There was evidence from local GPs that a dedicated PD service would be well received. Government policies supported the need for the service (DH, 1990, 1998), but a collaborative consultation was needed to establish the needs of people with PD in Northumberland. This would ensure the service would be accountable to users, responsive to their needs and provide them with greater control of their condition.

The consultation period took six months and involved the following groups:

- Patient and carers via drop-in centres

- Local PD society branches

- Primary care groups

- District nurses

- Community health councils

- Secondary care physicians and management

- Therapists (physiotherapy, occupational therapy and speech and language therapy).

Through this process it was identified that:

- Many people had been managed solely by their GP

- A few had attended one of the neurological clinics at Newcastle, which entailed travelling long distances

- People managed by their GP found it difficult to get any information about PD

- Treatment from GPs was often restricted

- People managed by one of the consultants at Newcastle were experiencing problems travelling to clinics, especially if they were getting older and during the winter months

- None of the people spoken to had access to a local dedicated multidisciplinary team.

Box 2 summarises patients' needs.

In order to achieve equal access it was decided to establish clinics in the general hospital at Wansbeck and in the community hospitals at Berwick, Alnwick, Morpeth and Blyth (see map).

Contact with the patients was predominately by the PDNS in the patient's own home, in nursing/residential care settings, at the medical clinics or via telephone contact.

As initial funding was available for only one PDNS, a service was not provided to the western primary care groups, as the PDNS would not be able to cover the geographical area. When further PDNS funding became available in 2002 a monthly clinic was started at Hexham General Hospital.

Nurse-led clinics
It was agreed that the first assessment should be performed by the PDNS in the patient's own home. This promoted a more relaxed assessment, with time for the patient to ask questions and not feel threatened. The patient was then seen in a clinic, with follow-up and reviews arranged as appropriate. The most realistic solution to the geographical challenge appeared to be to establish a telephone support line and PD nurse-led clinics around the county to review patients.

Establishing the clinics

Because of the size of the area to be covered, five different clinics were required initially in the different hospitals around the county and this proved to be more difficult than anticipated. Established clinics took priority over clinic space. No administrative support was given to run the clinics (to book patients in, to book follow-up appointments or to close the clinics), which meant training was required for the PDNSs in using the patient administration system.

As with all change, this process needed to be evaluated. Failure to evaluate the impact of a given change, or to modify the change if subsequent evaluations prove negative, serves only to confirm the suspicion that the change was implemented for the wrong reasons (Pryjmachuk, 1996). All data relating to the nurse-led clinics, the number of clinics, patients seen, types of intervention, patient outcomes and disease-specific outcomes were collected. Patients were also invited to take part in a satisfaction survey and in focus groups to look at future service developments.

When patients were first admitted to the service, the degree of their impairment, disability, and handicap was measured. This was done using a recognised disease-specific scale, the Unified Parkinson's Disease Rating Scale (UPDRS) (Fahn et al, 1987). The patient was reassessed after one year to measure the individual impact of the service on both the patient and his/her carers.

Results: Service evaluation
In the first nine months, 152 patients were referred to the service, of whom 78 had idiopathic PD according to the United Kingdom Parkinson's Disease Brain Bank Clinical Diagnostic Criteria (Hughes et al, 1992). The mean age was 76 (SD 8.377) and 46% were female. The mean UPDRS score at baseline was 35.51, and at one year was 37.54. In total, 48.7% had an improvement (decrease) in the UPDRS score. The mean decrease in the UPDRS score in this group of patients was 7.37.

These results were surprising given that PD is a progressive neurological condition; one would normally expect a worsening of the UPDRS score year on year.

The results of the satisfaction survey were very positive. For example:

- 94% of patients agreed they were involved in decisions about their treatment

- 42% of patients strongly agreed and 52% agreed that PD team members were competent and knowledgeable about PD.

The themes generated from the satisfaction survey were used to prompt discussion at the focus group meetings. These were held in Ashington, Berwick and Alnwick. Kitzinger (1994) defined focus groups 'as tapping into human tendencies, attitudes and perceptions relating to concepts, products, services or programs and developed in part by interaction with other people'. The assessments and focus groups' analysis were carried out by Catherine Jones and Annette Bowron.

All the groups agreed that they were generally happy with the service. However, some patients indicated that they would like more opportunities to meet people with similar problems. Some also felt that a newsletter from the Parkinson's disease team would keep them updated on current events and allow them to make a contribution.

Patients felt their involvement was paramount and this is supported by local policy and the government agenda. In addition to the patient satisfaction surveys and focus groups (which are now built into our service evaluation plans), we have carried out 'away days' for the patients and their carers so that they are involved in service and current practice updates.

An education and support programme to accommodate individual requirements, which was developed at North Tyneside General Hospital, has proved to be popular, and there are plans to develop this programme in Northumberland. In areas where support networks were less well developed, we have taken steps to implement a network of support, mainly through facilitating the development of local support groups.

Evidence for a co-ordinated PD service is backed up by work by the PDS and the Government, who support multidisciplinary team working in order to influence patient outcomes and satisfaction. The difficulties that arose as the service was being set up were largely managed by the commitment of the team and its leaders. Feedback from users has indicated that the changes in practice have resulted in a successful service.

It appears that a co-ordinated PD service can improve UPDRS scores in a substantial number of patients. This improvement is undoubtedly due to a number of factors, including drug regimen changes, but it is likely that regular input from the PD team was a major factor. However, further work on the impact of specialist teams in the management of PD and the impact of the PDNS is required.

Author contact details
Catherine Jones, Parkinson's Disease Nurse Specialist, Wansbeck General Hospital. Email:

Latest policy
The Parkinson's Disease Society charter states that people with PD have the right to:

- Be referred to a doctor with a special interest in PD

- Receive an accurate diagnosis

- Have access to support services

- Receive continuous care

- Take part in managing their illness.

Source: European Parkinson's Disease Association/World Health Organisation (1997)

- The original PDNS post in Northumberland was initially funded by the Parkinson's Disease Society

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