Breaking the symptom cycle – A patient’s story about new Expert Patient Programme launched for Rochdale borough patients

Breaking the symptom cycle – A patient’s story about new Expert Patient Programme launched for Rochdale borough patients
20 October 2016

A NEW service provided by staff at The Pennine Acute Hospitals NHS Trust will see patients from Heywood, Middleton, and Rochdale learning to manage their own long term conditions and/or caring situations in a more supportive way, whilst working in collaboration with local health and social care teams.

The Expert Patients Programme (EPP) is a nationally accredited programme run by people who ‘live with’ a long-term medical condition or are carers.  It is based on the idea that if people feel more in control or have the perceived ability to follow health guidelines, then they would be more able to manage their condition better on a day to day basis.

The programme is free and runs over seven weeks at venues based in the local community.  It is designed around information giving and sharing and as the programme is delivered by people who have previously attended the course themselves, and are living with a long-term condition or are carers, this means they understand some of the challenges which participants often face.

The programme is unique in that it breeds its own tutors as people who attend the course can then go on to train to deliver it back to other course participants.  People who attend the EPP often report how beneficial having the course delivered to them by ‘people like themselves’ has really helped them.

Debra Howard from Newhey undertook the programme last year and was so impressed with the results of it that she decided to volunteer to act as a facilitator on future courses.

Debra said: “A few years ago, symptoms of arthritis led to me having two total hip replacements.  In between the two operations I had to take early retirement from my job and started with a fast, irregular heart-rate and palpitations, followed by pneumonia and a heart attack.  The second hip operation had to be postponed because of these problems, which resulted in muscle wastage because of my reduced mobility.

“I was left feeling very weak, vulnerable, isolated and rather sorry for myself, as earlier in life I had been keen on swimming, cross-country running and martial arts.  Everyday tasks required enormous effort and most of my joints were very painful.  I was not keen to rely on painkillers, but seemed to have little or no choice.  I tried very hard to walk and do other exercises, but found that it always left me feeling exhausted, and in more pain. 

“During the seven weeks that I attended the EPP, I learned that problems are not always easy to identify, but by using ‘tools’ such as ‘Problem-solving, Decision-making and Action Planning’, small steps can gradually add up to big changes. 

Prior to attending the EPP, I was fed up, in almost constant pain and felt like a victim of a dodgy heart and arthritis.  The programme helped me to understand that I was pushing myself too hard which left me feeling exhausted and in pain.  I realised that I needed to start small and progress very gradually. 

“Over time my mobility and general fitness improved markedly.  My anxiety levels about my symptoms reduced, resulting in the elimination of non-routine visits to my GP or A&E department.  I started feeling much more confident about being able to manage my day to day symptoms and any problems and took charge of my own exercise routine.  Now I volunteer for a few hours per week as a tutor with the EPP, having undertaken extensive training and assessments to become qualified.”

Julie Dawson, service manager at the Trust, said: “The programme is based on behavioural change – encouraging people to think differently.  This is achieved not necessarily by the content of the programme but more about how the programme is facilitated as the facilitators fully understand what it is like to live with a long-term condition or be a carer on a daily basis and how it affects them.

“People can self-refer onto the programme or be referred by their health/social care professional.  It is available for everyone diagnosed with a long term condition, disability, re-occurring illness and/or carers.  The programme is especially helpful to support people who may not be managing or coping well and are becoming more reliant on others.”

For more information and to access the EPP contact 01706 676315 or 07967664441.

Pictured: Debra Howard and Julie Dawson.