Expert Patient Programme

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Expert Patient Programme

Postby ITbird » Tue Jan 03, 2012 6:21 pm

Has anyone been on the Expert Patient Programme? It's for people living with long term and chronic conditions and pain.

Free to everyone. They do various courses relating to managing your pain, pacing, exercise etc. They even do an online one too.

Just wondered if anyone had any experience of this?

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Re: Expert Patient Programme

Postby denys » Tue Jan 03, 2012 6:26 pm

Sorry no I havent, I think they run something like this in Liverpool but its to far for me to go so I'm waiting to do some courses nearer to home through the doc. Have you been on it????? if so how did you find it????
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Re: Expert Patient Programme

Postby ITbird » Tue Jan 03, 2012 9:59 pm

Thanks, no I have just enquired about it today. Figure its definitely worth a go.

I'm waiting for the online course and any in Cheshire although I could maybe make it to Liverpool... On a good day!

Anything that helps to reduce the pain and improve my mental attitude must be good. I'm going to give it a go anyway :grin:

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Re: Expert Patient Programme

Postby coral » Mon Jan 09, 2012 4:40 pm

I went on this course last May, it lasted for 6 weeks if I remember rightly. It learns you how to cope with everyday pain. I missed one week as my step father had lung cancer and had to go to hospital with him. The course got me walking more and the breathing through pain was excellent. Every week we had to say what our goal was for the following week, it could be anything even just trying to read a chapter in a book, to walking, just about anything. I enjoyed it and was sorry when it finished. Give it a go, like you said it's free and it's nice to speak to other people that has to deal with long term pain problems.
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Re: Expert Patient Programme

Postby animalhouse » Fri Jan 13, 2012 9:57 am

sounds a reaally good idea.

the cynic in me says = the more you know the more/less likely you are to keep visiiting the drs and reduce appointments as you can then acccept they cant do anymore for you. :roll:

so when you get pain - just deal with it. :nono: :nono:

or if you know and research like alot of us on here - we are backwards and forward to drs saying :idea:

is it pisiformis, piriformis, slipped disc undetechted, sciatica, travpped nerve................ :?: :?:

drs smiles sweetly at appointment and say "its just the fibro remember" :roll: :roll:

but really ,

i do think it is a good idea and if it gets us out it helps deal wiht the loneliness and depression more than anything and frustration so
really good idea nd the the counsellor i had an assessment with other day is referring me to something like this.

take care guys. :-) :-)
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Re: Expert Patient Programme

Postby Woodentop » Sat Jan 21, 2012 5:30 pm

I would say to everyone - if you get the chance to go on the course do take it. It costs you nothing ( unlike a lot of other things ) and is really helpful. When I did the course, the first week I wondered whether it was for me, but after that I thoroughly enjoyed it. You will be with others who have long term condiitons, but not necessarily the same condition as you. It will surprise you that whatever condition you have, you all have the same problems, worries and fears and you will learn how to cope with things better.
It's obviously not a cure, but I found that the things I learned helped me to reduce the amount of meds I was on, which can only be a good thing when doctors just keep on prescribing until we are taking more than is good for us. You will get a handbook which is yours to keep and is a useful reference to have around with all the things that you've learned on the course.
You will often see other courses advertised which offer the same thing, but will cost you hundreds of pounds.
If I sound keen on this it's because after doing the course, I trained as a volunteer tutor and now deliver the courses in my area. I see how much it does for people. Give it a go - as I said, it costs you nothing! :-D
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Re: Expert Patient Programme

Postby diamondintherough » Fri Mar 09, 2012 7:04 pm

This sounds really promising, there is a course near me next month.
Im going to call to see about joining. Do you know if they help with transport costs as i will have to get a taxi?
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Re: Expert Patient Programme

Postby denys » Fri Mar 09, 2012 7:24 pm

I think you apply to your PCT for help with travel costs there is a form but cant remember which one, I recommend the courses designed to help you cope with a long term condition that cost nothing as if nothing else it gets you out of the house and interacting with other people which can only be a good thing :-D :-D :-D :-D :-D :-D
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Re: Expert Patient Programme

Postby diamondintherough » Thu Mar 29, 2012 6:15 pm

Ive been accepted onto this course next month and its only round the corner from were I live so dont have to travel far :D :D :D
Im so sick of being sick i'd give almost anything a go. Iv heard good reviews about this course and its given me something to look forward to :D
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Re: Expert Patient Programme

Postby denys » Thu Mar 29, 2012 6:20 pm

:fingerscrossed: you get something positive from it :-D :-D :-D :-D :-D
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Re: Expert Patient Programme

Postby wobblywoman » Sat Mar 31, 2012 9:42 am

I went for an assessment yesteday, at a CFS/ME specialist clinic run near me. I was a wee bit disappointed that they didnt agree 100% with my rheumy's diagnosis of Fibromyalgia (on top of my ME) despite the obvious pain I was in! It is very much CBT orientated looking at the handout. They expect people who are invited onto their course to go once a week for 8 weeks, but the sessions last 2 & 1/2 hours each time!!!! There is NO way I could sit through that with my pain, plus I'd be wiped out for days afterwards and have no energy to try and get through the rest of my normal routine. I was told that I would be expected to attend every week, 'even if you are feeling ill' !!!!!!! and follow exactly the exercise routines they give you 'even if you are feeling ill'!! I think this all sounds far too rigid and a bit "boot camp".
I told them I would go away and think about it ( after a two hour grilling by one doc and one psychologist) but have a flare up today as a result of attending yesterday's assessment. I would feel I was letting my briliant GP down if I don't sign up ( he got me a referral in the first place, and it was his idea as I'd never heard of them) but feel totally overwhelmed and anxious about the prospect of triggering a major relapse. If only the sessions were 1 hour maximum I feel I could just about cope, but 2 & 1/2 hours is a marathon. My husband, knowing me as he does, says it will be too much.
I just wish I could find out what sort of results they are getting, and what the drop-out rate is amongst participants. They were very cagey about that!!! :-? What do folks think? Worth a try or too much of a risk??
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Re: Expert Patient Programme

Postby Woodentop » Sat Mar 31, 2012 8:29 pm

Wobblywoman, I think you've confused the courses. The one you've mentioned does not sound like Expert Patient as there is no exercise routine with EPP and although they like you to attend every week, nobody would expect you to if you were feeling really ill. Also the EPP course runs for 6 weeks not 8. There is no pressure on the EPP course just lots of encouragement to help you cope with your condition :-D
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Re: Expert Patient Programme

Postby wobblywoman » Sun Apr 01, 2012 8:42 am

Thanks for the clarification Woodentop, I can't find an Expert Patient course near me at the moment, but will certainly keep looking. I was just interested to see if such specific ME/CFS clinics happen anywhere else in the UK ( I think Westcare UK in Bristol were the originators of this particular course as their name crops up on the handouts I was given). I have now decided I will NOT be attending the sessions :-)
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Re: Expert Patient Programme

Postby Zia2014 » Sun Oct 05, 2014 5:14 pm

I know this is an old thread so a massive *bump* here! but I've just been reading about these courses but can't find one local to me. Does anyone know if they are still running?
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Re: Expert Patient Programme

Postby moomoos » Wed Oct 08, 2014 3:45 pm

yes they're still running. Ask at your GP surgery, they should know
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