Expert patients

Training some patients with chronic illnesses to become ‘expert patients’ can significantly reduce the need for outpatient and general practice consultations and give the patients a much appreciated high degree of self-management.  Patients already, through experience, have highly relevant expertise including knowledge of their body and symptoms, of their lifestyles, and of treatment preferences.

This short article uses the example of self-care by diabetic patients to illustrate the scope of potential change and it goes on to describe what expert patients could achieve in a major part of mental healthcare – that of bipolar affective disorder.

Diabetic patients typically self-manage their diabetes on a day-to-day basis – training and sheer experience teach them to become expert patients. Self-managing diabetic patients on insulin not only work out the needed dose of insulin, they carry out their own injections. And this self-medication is of course potentially lethal.

Another group of patients who could be trained to self-manage and self-medicate is people with bipolar disorder.  A general practice with 10,000 patients would have about 100 bipolar people.  Based on thirty years of self-managing his own bipolarity, the author  (PD) calculates the saving of GP and consultant time  if only 25 patients in  such a practice became self-managing,  Outpatient consultations would drop from about  4 a year per patient (total 100) to about one a year (total 25).  And visits to the GP about bipolarity would drop from about 6 a year per patient to one a year (from 150 total a year to 25 a year).

For many years the bipolar charity – Bipolar UK – ran very popular 3-day courses in self-management.  A few patients  went on also to self-medicate – they held a bank of drugs which had been prescribed by their psychiatrists or GPs.  Bipolarity is normally treated with a stabilizing drug such as lithium but when lows or highs occur antidepressants or antipsychotics respectively are also called for.

It might be thought that a serious illness such as bipolar affective disorder would be too complex for self-management but most ups and downs are similar and patients can be trained not only to spot early signs of trouble but also to deal with them promptly including with medication.  Also, people close to a bipolar person – such as a spouse or work colleague – can typically spot a significant change in the bipolar person’s mood before the bipolar person him/herself.  They can be encouraged to become an informed ‘helper’ whose observations are welcomed and found to be invaluable..

Once a bipolar patient has learned how depression affects them they can recognise another depression and judge when it needs treatment with an antidepressant.  Without self-medication the patient has to see the GP and get a prescription – which may take 10-14 days to see a particular GP – and all for a known purpose and outcome.  Patients resent such delays in starting treatment, and symptoms often worsen.

Patients who know they are bipolar and want to avoid mania can learn to recognise very early when they are going too high and when they need a course of an antipsychotic,  such as olanzapine. For instance, striking lack of sleep is common and serious – and calls for urgent attention.   A patient who has become frankly manic typically has no insight into how out of control they are.  They are beyond self-management.  The crucial point is that mania normally develops over ‘several days and sleep-deficient nights’ and impending trouble can be recognised early and dealt with as an emergency.

One of us is a GP (RD), and comments “I like the theme of self-management which is becoming ever more important but needs to be well thought through and evidence based. It really encourages participation between doctors and patients with doctors required to be well up on the patient’s perspective and experience.

“I believe that self management will become more and more of an issue in health care not only because of increasing demands on stretched services but also because technology has the potential to transform self-monitoring and self-management. However, it takes time, education and experience to work out how to do it well and safely.

Bipolar affective disorder is just one chronic illness for which greater patient expertise is relevant: there are several other appropriate chronic illnesses for which we need expert patients, for instance, obesity; alcohol dependency;  and COPD (chronic obstructive pulmonary disease).  For a relatively small initial investment of consultant, GP and nursing time (to assist in training patients) much clinical time would subsequently  be saved and many patients would be helped to enjoy much greater self-management for years. A win-win scenario.

Peter Draper,  Carol Draper and Richard Draper

(PD is a retired public health consultant, CD is a former NHS manager and PD’s wife, and RD is a GP and is PD’s nephew.)