I read that in UK there is an Expert Patient course. It occurs to me that a lot of what we discuss here about managing PMR is covered in the Expert Patient courses as they apply to most chronic conditions.
Has anyone had experience of the course?
Julian, I haven't experienced an expert patient course but I did take part in a pain management course some years ago. Whereas the pain management courses are run by the NHS and involve physios, psychologists and nurses, the expert patient courses are patient-led. We do have more than a dozen PMRGCA support groups operating in areas of the UK, run by patients or ex-patients with PMR and/or GCA, probably much more tailored to those with these conditions than the expert patient course.
Some info from the NHS:
The Expert Patients Programme (EPP) is a self-management programme for people living with a chronic (long-term) condition. The aim is to support people by:
increasing their confidence
improving their quality of life
helping them manage their condition more effectively
What is an expert patient?
Many GPs who care for people with chronic conditions say that the patient often understands the condition better than they do. This is not surprising – many patients become experts as they learn to cope with their chronic conditions.
There is evidence that, with proper support, people with a chronic condition can take the lead in managing their condition. This helps improve their health and quality of life, and reduces their incapacity.
An expert patient is someone who:
feels confident and in control of their life
aims to manage their condition and its treatment in partnership with healthcare professionals
communicates effectively with professionals and is willing to share responsibility for treatment
is realistic about how their condition affects them and their family
uses their skills and knowledge to lead a full life
About EPP courses
The EPP course is open to anyone with a long-term condition. You don't need to be sent by your GP or hospital doctor, though it is helpful to let them know you're going on the course. The initial EPP course covers the following topics:
dealing with pain and extreme tiredness
coping with feelings of depression
relaxation techniques and exercises
healthy eating
communicating with family, friends and healthcare professionals
planning for the future
The course is free and consists of six consecutive weekly sessions, with each session lasting around two-and-a-half hours. The sessions are run by two tutors who both have a chronic condition. You can participate as much or as little as you wish.
Your doctor or local NHS community healthcare organisation can help you find suitable courses in your area. Alternatively, type "Expert Patients Programme" and the town or city where you live into Google – for example, "Expert Patients Programme Leeds" – to find your local course.
Alternative courses
Most EPP courses are designed to deal with any type of chronic condition, although some courses focus on a specific condition. For example, there is a course on diabetes and one on persistent (day-to-day) pain. There are also several courses for the parents and guardians of children with chronic conditions.
thanks John,
why I asked was that in Aus there isn't a similar approach. Nearest in my experience was some brilliant rehab that my insurance paid for a long time ago.
We have Medical Benefits Scheme and Pharmaceutical Benefits Scheme. Chronic for MBS is defined by the time symptoms are present. Chronic for PBS is defined by whether Doctor has provided a formal management plan through MBS.
A mismatch. One defined by the disease. The other defined by the treatment.
The result is that I and government pay the doctor when a prescription is needed rather than when a consultation is needed.
There's a review of MBS (all 5,500 items) starting soon.