"My experience about attending an Expert Patient Programme in Sutton-in-Ashfield, Nottinghamshire"

About: Mansfield & Ashfield

(as the patient),

I have been attending the above 6 week ‘Expert Patient Programme’ which commenced on 20th February 2014 and has been held and delivered at ‘The Lammas Leisure Centre’ in Sutton-in Ashfield; at first, I wasn’t sure what to expect, and to be honest was a little ’dubious’ as to what benefit I would actually ‘personally’ gain from attending this programme; I had hoped to gain a better understanding of how to ‘better manage’ my health conditions and try to function my home life with a little more ‘normality’ on a day to day basis taking into account my complex health conditions and disabilities, and went with the ‘intention and expectation’ that I may not come away with much new information because I had previously researched extensively and read up on lots of information, appertaining to my various intrinsically linked debilitating health conditions but thought I would give ‘it a try’.

Well how wrong was I; for the very first time in a long time I have thoroughly enjoyed taking part in this sort of programme; it delivers exactly what it says: the course is about listening and learning important skills such as:

Manage your symptoms: which I found some days very hard to do and some days didn’t do at all.

Deal with stress, depression and low self esteem: I had personally lost all my self confidence, and my GP and Consultant said I was depressed.

Manage pain: which I sometimes was able to do but now I understand a little better with newly learnt strategies.

Develop coping skills and strategies: I had knowledge of lots but didn’t always put them into practice.

Learn how to relax: I had a vast amount of experience of this because I used to teach others how to do this; but I had personally lost the ability to do it for myself.

Adopt a healthier lifestyle and healthy eating: the healthy eating aspect I already did and do but the healthier lifestyle I had lost somewhere within the last 4 years, due to the constant deterioration of my health.

Work more closely with those caring for you: I was totally fed up with conflicting advice from my Health Care Professionals and Consultants and thought ‘I give up, if they can’t be bothered then why should I’. I now know otherwise, I have a choice and I am part of the decision making process with regards to my own health and I intend to be a ‘big part of that decision making process’ through listening and communicating more effectively and taking back ‘control’ of my own conditions and lifestyles (and I give myself a 10 for that).

And lastly, but not least Plan for the future: for me personally, this is my biggest improvement; before I didn’t really see a future for myself and thought I would go through the rest of my life just ‘existing’ because I was no longer able to hold down any form of employment and often reflected that all my experience and all my qualifications had now gone to waste and were worth nothing (Just like me); how wrong was I.

Upon reflection this programme does so much more than those listed above; agreed it lets/allows you to practice the skills you learn through the support and friendship of others in the group without fear of failure or ridicule and/or any form of judgement. I found the knowledge that I am not alone and suffering on my own of great comfort because although you can have the help and support of family members and friends, they don’t really fully understand the aspects of your health conditions and needs and sometimes can unwittingly make you feel like a burden.

Our group including the Tutors has had much laughter and humour during our time together and for me personally it has given me the opportunity and confidence to do some much needed reflection and ‘allow for some ‘me time’. I personally feel, I can now plan for a future; albeit at this present time using my vast experience and skills in some form of volunteering opportunity and who knows hopefully, sometime in the future I may be able to go back to some form of employment. One of the other important aspects of this programme is the friendships I have gained and some hopefully, will be ‘lifetime’ friendships, we have all helped and supported each other throughout and I am sure this will remain so; these friendships have helped me through each week because of the humour, laughter and fun we’ve had whilst learning and listening; this has ‘spurred’ me on each week and I’ve looked forward to attending each week- I now feel a little more like ‘ME’ again and I can see a future.

This programme is a brilliant resource, opportunity and commodity that should be offered to many more patients who suffer from long term health conditions and disabilities. Unfortunately, I know of quite a few people who attend the Mansfield ME & FMS group that have applied to undertake this course and have not heard anything and some applied over 12 months ago; either they have ‘fallen through the net’ or their applications have been mislaid or become lost; the benefits to individuals by attending this programme for me personally far outweigh expectations and this programme should be given enough funding to strategically secure sustainability for the future, thus ensuring more patients can benefit from their attendance.

Your volunteer Tutors have done a brilliant job, they are knowledgeable, informative, friendly and approachable, and they’ve made the programme most enjoyable; I think because of their own experience/s and health conditions this has made it more realistic for those attending the programme because they are clearly able to show empathy and understanding to others. Thank you and ‘Well Done’

With Much Respect and Many Thanks

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Response from Dawn Anderson, Self Care Development Manager, Health Partnerships - Nottinghamshire Healthcare

Thank you so much for taking the time to put your experience of the Expert Patient Programme down in words. You are living proof that this programme works, an active self manager. I will pass on your comments to the volunteers who supported the course and thank you again for posting.

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