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Friday 30 September 2016
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Expert Patients Programme:a case of mistaken identity?

Patients & Services

Sonia Clark
Practice Manager
Moss Grove Surgery
Kingswinford, West Midlands

Sonia is a practice manager within a 12,700-patient, progressive, six-partner GP practice. She is also involved in GP registrar training, undergraduate teaching and multidisciplinary training

The EPP is an NHS-based training programme that provides opportunities for people with long-term chronic conditions to develop new skills to manage their condition better on a day-to-day basis. In Great Britain alone, it is estimated that as many as 17.5 million adults are living with one or more long-term health conditions,(1) which include:

  • Chronic glaucoma.
  • Deafness.
  • Chronic heart failure.
  • Chronic bronchitis/asthma.

These also include chronic conditions that can cause intense pain (eg, arthritis, ulcerative colitis, endometriosis), embarrassment (eg, psoriasis, incontinence) and stigma (eg, epilepsy, schizophrenia).

Set up in 2002, the idea of the EPP is to encourage patients to attend a training course to develop the confidence, skills and knowledge they need to manage their condition better and have more control over their lives. What makes these courses different is that they are run by people with long-term conditions, rather than by healthcare professionals or other training experts.

Box 1 shows a list of questions that is presented to someone considering becoming a volunteer tutor, to help them assess their suitability for the role. The ethos behind the programme is based on American research, which proved that patients with the necessary "self-management skills" had an impact on their disease and their general quality of life, which supports the government's vision for a new, patient-centred NHS.

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What's in a name?
However, from my own research it appears the feeling among patients is that the name of the programme may be misleading. The concept of "expert patient" is one of training patients to be more aware of their disease and their individual needs so as to manage their condition. This means developing self-awareness skills, rather than becoming an "expert" in the knowledge of their clinical disease area. This may be the reason why many GPs, nurses and patients have been slow to engage in the process of encouraging this programme to be delivered at practice level.

Many GPs and patients are confused by the term "expert patient" and feel that disease management expertise lies with the GP/disease management nurse/hospital consultant, and that is where it should stay! A recent survey reported that only 21% of doctors were in favour of the government's proposals on the expert patient; 58% predicted an increase in the workload of GPs; 42% believed it would increase NHS costs; and only 12% thought it would improve relationships between doctors and patients.(2)

A more recent MORI survey of health professionals found that 63% of doctors think, in the long run, better-informed patients will require more of their time – a rather higher proportion than nurses (48%) but less than pharmacists (76%).(3) Many medics felt that the expert patient is the demanding patient, the unreasonable patient, the time-consuming patient, or the patient who knows it all.(4)

However, patients do appear hungry for more indepth knowledge of how to cope with their long-term condition – many trawl internet sites to download information on additional therapies and on how to self-manage their conditions, which may not always be accurate and appropriate. For these patients, "Self-Management of Long-Term Conditions Programme" (SMLTCP), although a rather long title, would appear to be a more appropriate descriptive name for this project.

Developing the SMLTCP might encourage more patients and GPs to become involved. Many patient panels across GP practices may well have the patient resources to encompass the project; perhaps patient panel members themselves could train as tutors to deliver programmes within their practices? In addition, many teaching/"Firm 1" training practices across the country will already hold a database of patients whom GPs have identified as demonstrating skills in the self-management of their long-term disease, who regularly take part in teaching programmes for medical students. Again, these patients would be ideal to train as "self-management" tutors within their long-term disease area.

Although practices across the country have initially been slow to take up this new concept of training patients to become more involved in taking responsibility for their condition, this may be due to the fact that the whole concept appears to be threatening to their clinical roles, rather than supporting them. However, the government is adamant this concept is the way forward and there is talk of a future new quality and outcomes framework (QOF) payment for self-care that will cover EPP, as well as payments under the enhanced services (NHS Gateway reference number: 6297).

In addition, to emphasise the government's enthusiasm and commitment towards self-management and support programmes, it is also developing a Supporting Parents Programme (SPP) – a support course for parents and guardians of children who have long-term and life-limiting conditions – and a "Looking After Me" (LAM) course  (for adults who care for someone living with a long-term health condition or disability), which implies these programmes are here to stay!

Conclusion
Although the concept of patients promoting self- management skills to other patients can only be seen as a positive move and is in line with the government's vision for a patient-centred NHS, there appears to be a case of mistaken identity in the name "Expert Patients Programme". I'd suggest an alternative name: "Coping Patients Programme"; "Patient Champion for Self- Management of Arthritis (or Diabetes, etc) Programme"; or, more appropriately, "Self-Management of Long-Term Conditions Programme" (SMLTCP). Such a title may encourage more patients and clinicians to support the exciting concept of patients promoting health to other patients.

Further information regarding the Expert Patients Programme can be found at:www.expertpatients.nhs.uk

References

  1. Expert Patients Programme. Long-term health conditions. London: Department of Health; 2004. Available from: http://www.expertpatients.nhs.uk/conditions.shtml
  2. Kennedy, A, Gately C, Rogers A, et al. National evaluation of Expert Patients Programme (EPP): assessing the process of embedding EPP in the NHS: preliminary survey of PCT pilot sites. Manchester: National Primary Care Research and Development Centre (NPCRDC); 2004. Available from: http://www.npcrdc.man.ac.uk/Publications/Epp.pdf
  3. Market and Opinion Research International (MORI), for Developing Patient Partnerships (DPP). Medicines and the British. London: MORI; 2003. Available from: http://www.mori.com/polls/2003/medicines.shtml
  4. Shaw J, Baker M. "Expert patient" – dream or nightmare? BMJ2004; 328:723-4.