Parkinson's sufferers need trained nurse aid

Published on Saturday 21 April 2007 11:45

WHEN someone is diagnosed with Parkinson's Disease it is not uncommon for them to feel confused, and to struggle with coming to terms with what having a progressive neurological condition can mean.

It is a very difficult time for both the patient and their family and a time when a great deal of support is needed.

But despite this, a remarkable number of patients are not receiving any information at the time of diagnosis and are left facing their future without the support they need.

Even the most basic questions go unanswered, and patients are left without knowledge of what the disease is, how the condition will progress and how it will be treated - leaving them feeling isolated and unable to cope.

This is why the Parkinson's Disease Society has produced a DVD that answers the most common questions and concerns that people often have when they are told they have the condition.

The DVD information resource, called Being There, is now available to health professionals throughout the Lothians to give out to anyone in their care who has just discovered they have the disease.

Its release is timely, in that Parkinson's Awareness Week - which is our platform to campaign for the rights of patients - is just coming to a close.

Although the high profile Parkinson's sufferers such as actor Michael J Fox and the former boxer Muhammad Ali have done much to raise the profile of the condition, there is still much to be done. Parkinson's Disease is a progressive neurological condition that can affect movement such as walking, talking and writing. It occurs because of a lack of nerve cells in a particular part of the brain.

Although there is no cure for Parkinson's, there have been many advances in treatments and patients can lead a full and active life given access to support and appropriate services.

For this to happen, we believe that access to a Parkinson's Disease Nurse Specialist (PDNS) is crucial in supporting patients to be as independent as possible. Evidence suggests that people with Parkinson's have improved health outcomes and a better quality of life when they are able to access prompt and ongoing advice and support from practitioners with dedicated neurological expertise, such as specialist nurses.

A serious problem in the Lothians is that there is just one Parkinson's Disease Nurse Specialist for the 2000 patients who live in the region.

When you consider that the recommended caseload of one of these nurses is around 300 people, it becomes obvious that many more are needed.

Ask anyone with Parkinson's who has access to one of these dedicated professionals and they will tell you that their nurse is one of the most important people in their lives. We know this from the feedback we receive.

With medication sometimes producing miserable side effects, it can be comforting to know that someone is available for support and to help. There are other reasons, too, in that the use of these nurses can assist busy hospital consultants and help to cut waiting times.

If patients do not have access to a specialist nurse, hospital-based specialists are needed to conduct the regular examinations that Parkinson's patients must have. This lengthens waiting times for other patients because precious clinic time is taken up by those who could be managed by a Parkinson's nurse.

The Scottish Executive has also said that systematic support for people with long-term conditions is a key pillar of its vision for the future of the NHS.

The overall direction of its policy is to focus on treating patients as early as possible and as close to their homes as possible, by a team of professionals who are able to provide a range of care.

The proper provision of Parkinson's Disease Nurse Specialists could go a long way to make this vision a reality by providing patients with the expert support and advice they need to enable them to control their symptoms.

The Parkinson's Disease Society, which was established in 1969 and now has more than 29,000 members, is even willing to fund new posts.

We will, however, only do this for two years, then we require local health boards to step in to ensure that patients receive continuity of care.

Finally, we are also calling for new guidelines that health commissioners in Scotland can use as a basis to design high-quality health services for people with Parkinson's.

Although officials are due to start work on new guidelines later this year, they appear to be narrowly focussed on medication.

To fully meet the needs of people with Parkinson's in Scotland, we believe any new guidance should be expanded to cover the diagnosis and management of this complex condition, and that would need to consider the most effective use of therapies and specialist nurses.

The Parkinson's Disease Society wants to help and support health providers in Lothian develop services which meet the needs of the 2000 people with Parkinson's in the area.

I am urging healthcare providers to get in touch to see how we can help. They can contact me on 01786-433 811 or at [e-mail]

Andrew Sim is the manager of the Parkinson's Disease Society in Scotland