Expert Patients Programme - An excellent free course for those of us with chronic Check it out!

I took the course about 3 years ago and it was great. It tries to help you to help yourself. It covers handling your illness, setting achievable goals/targets, coping with depression and fatigue, how to communicate with family, friends and the medical profession(easier said than done, lol). It also tells you about additional services offered by the chemist for example - Did you know to report medication side effects to your pharmacist to be officially logged or that you could pick up an emergency info container for your fridge from the chemist?

You work through a manual which is yours to keep, plus you get to discuss issues with the group and learn from each other. It's a great opportunity for you. My gp and rheumy knew nothing about it so don't wait for them to suggest it. As far as I'm concerned you should be automatically told about it as soon as you're diagnosed. I'm still in contact with about 5 of the people I met on that course, so if you just make some new friends it'll be worth it. Xxx

20 Replies

  • Thanks - sounds really useful. I will get on to it. :)

  • How do l find out about how to go to one of these courses ?

  • Hi, I've given the website address. Or just look up the name on the internet and you'll get there. Xx

  • Thanks for posting this information, having looked they do not provide a course in my area (south wales) but you can register on the site for future planned courses - and one would assume that if more people do so there may well be a need to provide courses in new areas.

    Thanks for this info, it sounds great!

  • I also did this and found it really helpful. You can usually pick up info about these courses from the GP surgery and hospitals.

  • Hi, don't bank on it. Even though I gave both my rheumy and my gp leaflets after I did the course, I don't see any advertising now when I go or at St Thomas. Xx

  • I have found the same thing at all my Gp and hospital appts, no sign of any Lupus literature advice to be seen anywhere yet l know its readily available, so annoying keeping us in the dark !

  • We should order stuff from lupus UK to leave. I got books on diagnosis and treatment of lupus for medical professionals for both my gp and rheumy free from lupus uk. I don't do enough for my own illness. I did the Marie Curie daffodil collection for an hour outside Tescos a few weeks ago, yet I've done nothing for lupus. Xxx

  • this is really true,i think its important that some info be passed on in any little way.last year dropped leaflets at my Gp and pharmacy nearby.its also strange that consultants in rheumy don't have any recent literature on lupus

  • My Renal Consultant put it into concept once for me, he told me if two people were to stand at the entrance of a hospital , both with collection boxes, one collecting for cancer, the other for Lupus - the lupus box would get very little in comparison to the cancer one as people just don't know what Lupus is. So very true unfortunately : (

  • Yes, he's right, but it's our duty to each other really to spread the word. The butterfly is a good symbol but its the same as at least one other charity I know, Debra - a charity for an extreme skin condition, like being allergic to the sun almost. There are more of us Lupus sufferers out there, just undiagnosed, they currently think they're just depressed, going mad or becoming a hypochondriac, doctors fob them off and friends and family are doubting them - awful, awful position to be in. Plus I want to find a cure which won't be done without research and that takes money.xxxx

  • this is true as welll ,just in January ,i was reading a blog that got me really thinking to the extent I had to draft something I was going to send in but took ill and all too soon time passed.why is this the will be really nice if lupus got the same publicity cancer gets.adverts,i think the problem is partly due to the extent of research done here as against that of USA (think I am right here)

  • I have just completed this course before Easter - it was run by people who also have chronic conditions like MS, stroke etc. I was great to be in a room where we could share our feelings with people who understood. The course ran for a 3 hour session for 7 weeks. It looks at how to cope with our illness and symptoms and learn to live with them and manage them positively. It also teaches us to be thankful for what we do have rather than focusing on what we can no longer do due to illness. This helped put things into perspective for me. It even asked if we wanted to become volunteers (in the future) to run these courses.

    I think it was useful. Naturally you will always have challenges that you struggle with mentally and physically and where there may not be much you can do, other than accept things the way they are. But atleast you have explored options and tried to do your best!


  • Glad you enjoyed it too. Great description. I looked in to volunteering to run a course but it's a huge commitment, it doesn't take into account flares etc. It was like signing a contract for a job, they wanted two years commitment or something, but that was 3 years ago, things may have changed. Xxx

  • I just tried the link and like every other link I try there is nothing in my area :-( Northumberland

  • I hope you registered your interest though. I did contact other chronic illness suffered I knew and we banded together so when I phoned I gave them 4 names. We had to wait a couple of months. All the best xxx

  • Hi Guildford

    This course sounds very helpful, what sort of time scale & commitment did you have to make? Eg as it once a week for one day?

  • Hi, for me it was once a week for two hours over 10 weeks I think, but Renu, see long comment above, did 3hrs over 7 weeks. Check out the site. Read Renu s comment as she goes into more detail and explains it well. Xxx

  • Thank you. I had heard it mentioned before at my lupus support group, but now I know more I will look it it further. X

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