There are at present over 120,000 people with Parkinson’s disease living in the United Kingdom. By the year 2000, this number will rise due to the increasing numbers of elderly people within the population. At the same time, the pool of available informal carers is also diminishing. In 1920, a couple in their 80’s would have had 42 relatives able to care for them, 14 of whom did not have jobs outside the home. Today people over 75 have on average 11 female relatives, with only three having no job outside of the home.
This progressive neurological disease currently has no cure. It may start with stiffness in the shoulder or trembling in a hand but for some people it may eventually affect all the limbs, making it hard to dress, to wash, to feed or undertake other tasks associated with normal lifestyles. Difficulties in the emotional life, may also be experienced. The loss of facial expression and changes in the strength and musicality of the voice, especially if associated with changes in body languages, can lead to misunderstandings and distress. For some individuals, confusion and loss of memory may also occur in later stages.
Parkinson’s disease differs in many respects from other neurological conditions. Its progression is highly variable. The degree of disability can fluctuate unpredictably over the course of a day or even a single hour. Medication needs to be effective. It is essential that professional advice is given on drug management which will suit the patient’s individual needs, and therefore improve their quality of life.
People with Parkinson’s want to be actively involved in the management
of their illness. When asked what they need to improve their quality
of life, the following requests were made:
To meet with these requirements, people with Parkinson’s need to be given knowledge of the disease and become partners with the multidisciplinary team who are delivering care to themselves and their carers. They deserve to be referred to a doctor with a special interest in their illness, who is able to tell them the diagnosis and answer their questions. Early referral to the multi-disciplinary team generates a link with a group of professionals who can make a difference to their lives and the lives of their carers. Recognising the importance of these links and the need for expert advice, the Parkinson’s Disease Society (PDS) has championed the post of Nurse Specialist. This paper outlines the background to this development and describes a multi-disciplinary, partnership approach to support and caring which should be transferable to other services.
The Nurse Specialist Initiative
The first Parkinson’s Disease Nurse Specialist was appointed in the NHS in Cornwall in 1989. She had originally been funded from a research project, but was appointed from within the NHS to further develop the work. Several other initiatives followed in a number of localities, but the major leap was taken in 1992 when an initiative commenced, and has continued through partnerships between the PDS, Eli Lilly, Britannia, Roche and DuPont Pharmaceuticals, to further develop the post of the Parkinson’s Disease Nurse Specialist around the country.
The aim of these Nurse Specialists has been to work from hospitals and within the community, utilising existing resources and the expertise of the multi-disciplinary Health Care Teams to improve the quality of life of individuals and their families living with Parkinson’s. This initiative has been overseen by a Steering Group supported by an Implementation Group, to ensure that the agreed focus is maintained and the project continues to expand. Evaluation projects are ongoing, to ensure that the benefits of such models are captured and comparisons made for the future. These include analysis of the cost effectiveness of introducing specialist nurses.
It is the ambition of the PDS to further expand the numbers of Nurse Specialists to over 100 by the year 2000. In addition, they hope to standardise the education of the Nurse Specialist. Already the English National Board A43 Course has been established in several Universities, and it is likely that the number and variety of courses will rise in the future. Bursaries are available for nurses who wish to further their skills working with people with Parkinson’s. Employers are encouraged to support the move to further improve the education of this growing specialism.
The Skills of the Nurse Specialist
The Nurse Specialist’s post, alongside other services, can dramatically
improve the quality of life of those with this chronic illness. It
has been recognised by the PDS that many other nursing posts exist that
may have a special interest in Parkinson’s (for example, generalists such
as neurological and movement disorder nurses). The Society has established
a database to collect the names and addresses of these nurses working within
the UK and already a number of study days have been arranged for this group.
In addition, a special interest group has been established within the Royal
College of Nursing. The Society believes that in order to acquire
the designation of ‘Parkinson’s Disease Nurse Specialist’, a certain criteria
must be met. These include the following:
If the above criteria are not fulfilled, the nurse will be unable to take the title - Nurse Specialist. They should then use the title - Nurse with special interest in Parkinson’s disease, or Parkinson’s Disease Liaison Nurse. It is also recommended by the Society that they are appointed as either ‘G’ or ‘H’ grades.
How the Nurse Specialists Work
The introduction of these posts has been a great success. These nurses have increased awareness of Parkinson’s by education and training, assisting those living with the disease to improve their quality of life by identifying and linking to appropriate care services and therapies at an early stage in their illness. Due to the increasing number of posts, a large group of people with Parkinson’s have been helped. Many of these have been supported and funded locally from a variety of sources.
The Nurse Specialists have established Specialist Parkinson’s disease/Movement Disorder clinics at designated hospitals within the UK, alongside Consultant Neurologists and Physicians. In excess of 40 clinics have been established, the number of which will increase as more Nurse Specialists are employed. In these clinics, patients and carers are assessed and interviewed by the Consultant, Nurse Specialist and other relevant therapists.
Through the introduction of the Parkinson’s Disease Nurse Specialists,
Consultants have been able to adjust Outpatient clinic schedules in order
to develop specialist clinics. Dedicated clinics give the patient
and carer time to discuss their individual problems and assessment highlights
the need for input from relevant therapists, for example:
The initiation of new drug therapies or regimes takes time and requires assistance. The Nurse Specialist monitors new therapy changes which gives the patient confidence and supports the carer when major changes take place. They will also liaise with General Practitioners and Consultants, and facilitate any therapy alterations. The Parkinson’s Disease Nurse Specialist will also work to ensure that people with Parkinson’s obtain not only optimum care but also improved quality of life.
Investing in Parkinson’s Disease in the Future
Purchasers investing in the health of their population should consider the investment they make to obtain, for as long as possible, an independent lifestyle for people with Parkinson’s and their carers. A significant cost is associated with the care of the people with Parkinson’s. It is estimated that £28 million a year is spent on drugs, and a staggering £390 million on care, of which two thirds is spent on hospital admission and residential accommodation. This is at a time when 90% of care continues to be provided from informal carers.
The number of people with Parkinson’s will increase in the future, whilst the number of informal carers will fall. What will be the cost when the pool of informal carers is reduced? The Parkinson’s Disease Nurse Specialist, through highly developed nursing skills, can assist and support people living with this chronic neurological illness, as well as their carers. They can act as an expert resource to other health care professionals enhancing the interface that they have with people with Parkinson’s and their families. This is the only way that specialist help, encouragement and support can be provided.
Having ‘pump primed’ the Nurse Specialist posts, the PDS has extended its partnerships with the pharmaceutical sector to include those in the NHS. Many purchases and providers have recognised the value of these posts and have agreed to continue the funding once the PDS pump priming ends. This is an increasing trend, with many more letters of intent progressing and new posts being established. Formal evaluation of the projects has been undertaken and the outcomes have proved to be very positive.
The Way Forward
This initiative has been a great success for those with Parkinson’s
and their carers. It is a model of co-operation and partnership across
all sectors. It is important that the lessons learned throughout
the development of this initiative are widely shared and transferred to
other conditions as appropriate. The main lessons to be taken from
this exercise are:
Such a model of care recognises the value that each and every member of the team brings. Developments such as this across other specialities will provide a high quality, cost effective, multi-disciplinary way to care. This is a model of integration and partnerships and provides a good template for the future.
Mary Baker
National & International Development Consultant
Parkinson’s Disease Society
Sheila Roy
Independent Healthcare Consultant
Parkinson’s Disease Society
United Scientific House
215 Vauxhall Bridge Road
LONDON SW1V 1EJ
Telephone: 0171 931 8080
Facsimile: 0171 233 9908
Supported by an educational grant from Pharmacia & Upjohn
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