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BMJ 2000;320:1660-1662 ( 17 June )
This week our series on modernising the NHS (in which we are
responding to the prime minister's desire to create a national
plan for the NHS) covers patient care (empowerment). In this
article Mary Baker writes from her position as chief executive
of a prominent national organisation representing people with
a specific chronic disease.
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Modernising the NHS:
Patient care (empowerment): the view from a national society

Mary Baker, chief executive.
Parkinson's Disease Society, London SW1V 1EJ


These are challenging times.

People are living longer, and with old age comes frailty and more long term illnesses.

At the same time there is a decrease in the availability of informal carers because of the falling birth rate, changes in family structure, and changes in the role of women in society, with more now taking part in higher education and following a career.

An urgent need therefore exists to focus more sharply on families affected by chronic disorders so that their needs can be met appropriately.

People want to participate in the management of their illness, and we can no longer afford to waste time, scarce resources, and finance.

The challenge is to harness the knowledge of patients and their desire to manage their own condition to ensure that resources are used wisely and services provided appropriately.

Making partnerships a reality

Firstly, we must turn all the rhetoric about partnerships into a reality.

Voluntary organisations can help build bridges to the power bases of central government and medical and social services.

We need to combine the knowledge and clinical observations of healthcare professionals with the experiences of those people living with, and affected by, chronic illnesses on a daily basis.

Only then will it be possible to achieve an integrated picture of the challenges of managing chronic illness, such as Parkinson's disease.

(Inevitably most of my examples come from Parkinson's disease, but they are applicable to most chronic diseases, and many acute ones, as well.)

Information technology

Secondly, we should harness the power of information technology to support partnerships and to disseminate information.

All organisations concerned with health and social care have to look at innovative ways of providing accurate and validated information.

One example is the Parkinson's disease CD Rom.

This combines information technology and patient involvement to create a unique resource for patients, carers, and professionals.

Developed in partnership by the NHS West Midlands, the Parkinson's Disease Society, and Dutch developers Foundation September, this multimedia CD Rom will provide a wide range of information on Parkinson's disease in an interesting and accessible format.

It is aimed at patients, carers, and health and social care professionals, and is due to be launched later this year.

Because Parkinson's disease affects all aspects of life for people with the condition, the disk will contain much more than just medical information.

For example, it will also include psychological and social information, and all the information has been checked by both an editorial board and a consumers' panel.

Through the information patients should be able to monitor their own health more effectively and one aim is more efficient health provision.

The CD Rom is the first of its kind in Britain, and we hope that it may serve as a model for other conditions.

It aims to meet many of the government's key objectives for a modern and accessible 21st century health service.

A website will also be developed which will allow users to download updates and, include extra information, and it will also provide links to other useful sites.

The Parkinson's CD Rom Project illustrates all that is best about the changes currently taking place within the NHS.

The project has highlighted the potential of partnership working between the NHS, users, and carers and the voluntary sector.

Establish commissioning standards for diseases

Thirdly, the NHS needs to establish commissioning standards and guidance for common diseases to ensure some uniformity of provision and service.

Parkinson's disease is a relatively common chronic disease that has a wide impact on patients, carers, social services, and primary and secondary health services.

It is also a common cause of admission to institutional care.

Regrettably, however, these services are often unstructured and uncoordinated, and both patients and carers are relatively neglected sectors of the population in current commissioning plans.

This description also applies to many other chronic diseases.

Together, these conditions account for substantial amounts of health and social care spending.

For Parkinson's disease, for example, each primary care group is likely to have about 160 patients with the disease and a similar number of carers, and the likely expenditure on health and social care for patients with this condition will be around £1m (the likely range is £560 000 to £1.6m).

There is mounting evidence that a properly planned and commissioned service would serve these patients with greater efficiency and effectiveness.

The Parkinson's Disease Society therefore worked with general practitioners, neurologists, physicians, nurses, patients, carers, and therapists, supported by funding from a consortium from the pharmaceutical industry, to produce two documents.

The first, "Parkinsons Aware in Primary Care", published in 1998, is an awareness guide to help those working in primary care to meet the needs of people living with Parkinson's disease and their carers.

The second, "Moving and Shaping", was published in 1999 and is designed to help busy primary care groups to examine their current services and make the necessary changes to ensure that patients and carers receive the coordinated services that have been shown to deliver better care, cost effectively, thereby enhancing quality of life.

The commissioning document (available from the Parkinson's Disease Society) includes background information about the disease, a model for care, needs assessments, and examples of how a service for Parkinson's disease might be commissioned.

These two documents are the first phases of a three phase initiative launched in 1998, the final phase being an education pack for general practitioners, due to be completed by the end of 2000.

These new commissioning arrangements can be used by primary care groups to work in partnership with other care providers and agencies to produce a health improvement plan for this disease in several straightforward steps.

Each of these steps is based on tried and tested methods and backed up with evidence wherever this is available.

The plan should fit within the clinical governance arrangements for primary and secondary care and also help to satisfy the key objective of integrated care in Our Healthier Nation.

Finding out what matters to patients

Fourthly, actually asking patients, their carers, and clinicians about how their illness affects them and correlating these findings with existing data on services can yield useful information.

For example, the global Parkinson's disease survey was the first international survey to ask people with the disease, their caregivers, and clinicians how the illness affects patients.

The survey was developed and conducted with the support of patient organisations and specialist clinicians in Canada, Italy, Japan, Spain, the United Kingdom, and the United States; it also involved the European Parkinson's Disease Association and the World Health Organization working group on Parkinson's disease and the National Parkinson's Disease Foundation; and was funded by Hoffman-La Roche.

The survey began in 1998 and its results were presented at an international congress in 1999.

It showed that 60% of the differences in peoples' quality of life could be explained if information was known about the severity of the disease, the medication being used, the person's level of depression (assessed by the Beck depression inventory), how satisfied the person was with the explanation given at initial diagnosis, and the person's current level of optimism.

Each person with a chronic disease will find different ways of coping with his or her illness, but this survey has highlighted some essential facts that may influence an individual's quality of life.

The current findings from this survey are being widely distributed to patients' organisations and healthcare professions.

Supporting good clinical research

Finally, the NHS needs to support clinical research that will ensure answers to the important clinical questions.

In many chronic diseases the optimum drug (or other) treatment is not apparent or is disputed because the existing studies are small and underpowered, or have too short a follow up, or are inadequate in some other way.

In these circumstances what is needed is a large pragmatic trial to identify the best treatment, together with support for systematic reviews that can draw some conclusions from the existing data.

Patients' groups can play an important part here in providing financial or moral support for such studies, helping to define the endpoints for such a trial, and encouraging patients to take part.

The Cochrane Collaboration includes patients' representatives on its review groups to help identify the questions that are important to patients, and the Parkinson's Disease Society has recently been a major participant in PDMED, a large pragmatic trial of drug treatment in Parkinson's disease.

Oxford and Birmingham universities, together with the European Parkinson's Disease Association, received a grant of just under £1m from the NHS's research and development programme to perform the trial.

PDMED is a large, simple, "real life" trial that will determine reliably which class of drugs provides the most effective control for both early and advanced Parkinson's disease.

With patient numbers at the lower end of the recruitment target (of 2500-5000) the trial will have good power to detect differences overall between classes of drug, while larger numbers will permit investigation of subgroup effects.

To recruit the large number of patients needed to provide reliable answers, and to maximise the clinical relevance of the findings, the trial is designed to fit in with routine practice as far as possible and to impose minimal additional workload.

Clinicians can use the specific drug within each class that they prefer, and extra clinic based tests and evaluations have been kept to a minimum (most assessments are by postal questionnaires to patients and carers).

Conclusion

To bring about change strategic alliances have become increasingly important.

By working together and sharing expertise, we will be able to make the changes necessary to improve participation in life.

Asking people with diseases and their carers what they need from services is a key step to improving the management of Parkinson's but one that is generally forgotten by healthcare planners.

That requirement in turn exposes the need for better information both for patients about the treatment options available and for health and social care professionals about what patients need and value.




janet paterson
53 now / 41 dx / 37 onset
613 256 8340 / PO Box 171 Almonte Ontario K0A 1A0 Canada
visit my website "a new voice" at: "http://www.geocities.com/janet313/"