Parkinson's disease

Parkinson's UK and Parkinson's disease nurses

When anyone learns that they have Parkinson’s and they begin to look for information about it, their first port of call is likely to be Parkinson’s UK. Almost all the people we interviewed had used Parkinson’s UK at some time. Many had joined, though some had chosen not to attend any of the meetings. Members get the quarterly journal with up-to-date information, and can participate in activities of the society's local branches, support groups and special interest groups. Information is freely available on the Parkinson’s UK website, and a DVD is available for newly diagnosed people, it can also be viewed online.

Many people found the Parkinson's UK helpline useful. Fiona used it during the early years of her husband’s illness. At this time she felt that she should not rely on her friends for unlimited support, their GP had little specialist knowledge of Parkinson’s and there was a 6-month gap between hospital appointments.

The services for people diagnosed with Parkinson’s varies widely across the country and the organisation supports people trying to set up groups in their local area.
Specialist Parkinson’s nurses are usually attached to specialist departments of neurology where they work together with the neurological team. They may also be attached to departments of Geriatrics which often follow up older patients with PD. Some PD nurses are attached to GP practices where one or more GPs has a special interest in Parkinson’s disease. For many people they are a very important source of professional support. They gave advice on lifestyle, medication, local support groups and general day to day support. Many found their Parkinson's nurse friendly and easy to access. In some areas funding for a specialist Parkinson’s nurse does not exist, which troubled many people. There was a Parkinson’s disease nurse at the hospital Fiona’s husband attended but he could not be referred to her because they lived in a different Health authority area. Others, aware of this problem had worked hard, often with help from the Parkinson’s UK to persuade their authority to employ a specialist nurse. In some areas one was shared between two health authorities, and this made it more difficult to access her.
Parkinson’s nurses are nurse practitioners who can give advice on medication needs, make referrals to to health professionals such as speech and language therapists and physiotherapists. They can also give practical advice and counselling on the many problems experienced by people with Parkinson’s. And can advise and train other health and social care professionals. If you have Parkinson's and you're admitted to hospital, the nurse can contact the ward staff to make sure they understand your condition and the importance of you getting your Parkinson's medication on time. Isabelle accepted that her mother was seen only once a year by a consultant and that for more regular monitoring of her condition and her medication it was appropriate for her to be seen by the nurse. When Helen realised that her compulsive gambling might be related to her Parkinson’s she tried to contact her consultant but instead got to see the Parkinson’s nurse. That she could ‘pour her heart out to her’ was an enormous relief, and through her she could get an urgent appointment with the consultant to change her medication.

Many people described their appreciation of the way they can contact a Parkinson’s disease nurse either locally or through Parkinson's UK. Geraldine did point out that this still did not cover all the 24 hours of the day and that sometimes a person living alone could be very alarmed in the middle of the night. She suggested that it might be possible to set up a service, similar to what is available on some helplines, which would use trained people in different parts of the world who could to give advice in an emergency at a time when nurses in this country were in their beds.

Last reviewed May 2017.
Last updated May 2017.

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