Claire - a EPP Living Well Course tutor

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After being diagnosed with Lupus Erythematosus (SLE) in 2007, Crohns Disease in 2010 and Fibromyalgia in 2017, I had resigned myself to the fact that this was how my life was now going to be; in constant pain, struggling with fatigue, hospital appointments, unable to work and a burden to all.

In 2018, something snapped and I decided that I didn’t want to live this life so I started to look around for support groups and some sort of help. I tried a couple before stumbling across the Expert Patient Programme’s (EPP) Living Well Course with Sussex Community.

I attended the free six week course and found different ways to live my life, cope with pain and have fun again through a number of strategies provided by this course. Attending the course was the best thing I ever did!

I can honestly say that my life started to change for the better during those six weeks and has continued to improve ever since. I was so inspired that I decided to train as a volunteer tutor to deliver the course. I now deliver Living Well courses to help others to change their lives, just as it helped me. The satisfaction of seeing them on week six completely different to the person that walked in on week one is immeasurable.

Doing the course and becoming a volunteer tutor has not cured me, I didn’t expect it to, but it has given me the tools to cope. I am a member of a Youth Organisation and wear a uniform. I had come out of uniform about a year ago as I was struggling to cope with the ceremonial side of the organisation but in January this year, I went back into uniform (as evidenced by the photo) as I am now better equipped to cope.

My friends and family have all commented about how much better I am now. I keep myself busy but pace myself and rest when needed. As well as volunteering as an EPP tutor, I also help the team out with basic admin duties in the EPP office. I never thought I would see the inside of an office again, so it’s another great achievement for me.

The EPP is a wonderful service; I recommend it to all my friends, doctors and consultants. I really cannot praise it highly enough. The confidence, motivation and empowerment it has given me is huge. I am grateful and proud to be able to volunteer within the service and give something back.

The EPP service covers Brighton & Hove and West Sussex. We will soon be running more volunteer tutor training, so anyone who has experience of living with a long term condition who is interested in becoming an EPP volunteer tutor should contact the team on 01273 267545 or sc-tr.epp@nhs.net