The Pharmaceutical Journal
Vol 271 No 7258 p80
19 July 2003

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Would it not be better to have a greater number of "quite expert" patients?

By Peter Jenkins

The concept of the expert patient is intriguing and seductive. It would seem to solve several problems of the cash conscious but determinedly forward looking National Health Service by energising a whole new phalanx of people to back up the work of full-time professionals. Its development, by researchers looking for new streams of health care and finding an original use for personnel who do not need to undertake long and expensive degree courses, has certainly been well sold to politicians grappling with the present and perceived future needs of an increasingly elderly population.

However there could be unfortunate results. In these circumstances there is often a determination to see a project through, despite its weaknesses, because failure to do so would lead to an unacceptable loss of face for the protagonists of the scheme. This scenario has already been played out many times when political expediency and the ability to "find" resources come together.

A good example of this is NHS Direct. In theory an alternative source of information and help available 24 hours a day from the comfort of your armchair. It is certainly being used and the advice stream cannot be criticised given the conditions in which it is made available. However, although the figures for uptake are impressive, not so impressive is the fall in numbers seeking other consultations. The other cost which is not considered is the number of experienced nurses now practising triage on computer-based pathways in an office rather than using their expertise, gained over many years of training, dealing with patients face to face. How much this expensively trained group is contributing to the much-trumpeted figures for nurse shortages on the wards and out in the community we will never know. But the project must be maintained and applauded because the opposite is unthinkable given the amount of political capital invested in it.

The pilot stage of the Expert Patient Programme will last until 2004 and there are many primary care trusts that have already run courses as part of this pilot programme (PJ, 31 May, p743). So far, although full evaluation has only just started, the signs appear to be promising — but what criteria are being used?

What could be called the "level of expertise" of a patient is what will determine the usefulness or otherwise of this project and its benefit in defining the best use of resources over time.

At present the plan is to empower a cohort of patients with a high degree of expertise. The result will be a relatively small number of patients throughout England, trained and serviced by a series of professionals who have had to devote a considerable amount of time to this work. Even when the scheme is established, ie, user-led, and can be said to be self developing, the input of professionals cannot be discounted nor can the work leading to that stage be forgotten. All this means that a great deal of resources, both manpower and materials, has been expended on a relatively small number of patients.

Within the recommendations of the task force is the call for a partnership with patients' organisations and voluntary groups. One wonders at what level this can be implemented in practice. It will inevitably be patchy, disappointingly so for a scheme where the hope is that patients are to be empowered by various agencies. Despite the encouraging reports and news items over the years about the work of charities and support organisations for patients, when it comes to supplying a base the patient can build on the reality is generally less comforting. This is due to several weaknesses, including a lack of funding and committed personnel, and an obligation to work office style hours resulting in no or minimal cover over weekends and national holidays. Illness does not recognise these boundaries.

Then there is the postcode factor. Those patients in the more salubrious, well-populated areas stand the best chance of getting help from patient organisations. However, this help is limited and although the organisations do their best the results are, in the main, disappointing.

Rather than working towards so called "expert patients", who, by definition will be limited in numbers, it may be better to go for a greater number of "informed" or "quite expert" patients instead.

The political argument against this is that it is not nearly as sexy to work towards or write about if there are no "trophy patients" to feature. Despite this the greater good for the greater number is the most important health gain.

In reality even the expert patient as defined in the literature is a limited concept. He or she is not medically trained to evaluate new symptoms, perhaps from a new complaint, and his or her interests will be subjective. Only the unusual sick person can truly step outside their condition of pain, immobility, breathlessness or medical gadgetry.

Other countries use the term "self-management". Perhaps this better describes what should be aimed for in order to achieve the best results for the effort involved.

I am not suggesting abandonment of this innovative and empowering scheme but rather involving a greater number of patients at a not-so-complicated level. I am also suggesting a greater use of self-help groups and charities, and those health professionals who see and communicate with patients on a day-to-day basis. Community pharmacists should be more deeply involved in the scheme in order to get the message across to as large a number of patients as possible. Not all of these patients will end up as experts but it will boost the average sufferer who needs some extra help, for whatever reason. The network of community pharmacists is already in place as are the postgraduate centres to give them any additional training they may need.

I believe that with these reservations the project would have greater potential — but perhaps it would not hit so many headlines.

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