Expert Patient Programme

Anything to do with the NHS or Private Healthcare.

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Re: Expert Patient Programme

Postby moomoos » Wed Oct 08, 2014 4:03 pm

just a thought.... if GP surgery dont know.... try your local council cos thats who run the courses, not the NHS. Hope you can find one as they are well worth doing.
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Re: Expert Patient Programme

Postby Zia2014 » Thu Oct 09, 2014 4:42 pm

Thanks, my GP didn't know. Not run by the council, it was the nhs but I don't think it even existed here although there was one nearby. Now I can't find any evidence of it at all!
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Re: Expert Patient Programme

Postby moomoos » Fri Oct 10, 2014 1:17 am

Shame... hope you manage to find one.
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Re: Expert Patient Programme

Postby Zia2014 » Sat Oct 11, 2014 4:19 pm

Thanks. I have managed to get a place on a Long Term Conditions course, 6 weeks long, starting in a few weeks. Technically it's not available to me (out of catchment area) but they were under-subscribed and I asked just in case. It's not the same as the EPP but mentions it.
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Re: Expert Patient Programme

Postby moomoos » Sat Oct 11, 2014 6:07 pm

Oh good...I'm really glad that you have managed to find something to support you. Really well done for getting it as well.

I hope it helps you.... take good care x
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Re: Expert Patient Programme

Postby Zia2014 » Sat Oct 11, 2014 6:19 pm

Thanks, I'm amazed I got a place to be honest!
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Re: Expert Patient Programme

Postby Iceskatemum » Sat Nov 01, 2014 6:36 am

was on it last year, run by volunteers from the local arthritis non government agency (NGO). Very slick very professional and I found many new ways to try and help with the pain. It definitely didn't cure me of FM but has helped in getting me to a better place and learning to cope with things a lot better.

i know some are sceptical of these type of things but go on give it a go it just might help you '
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Re: Expert Patient Programme

Postby Zia2014 » Sat Nov 01, 2014 7:22 pm

Hi, good to hear you found it so positive. I'm not sceptical at all so I hope you're not saying that to me, I think it's a great idea! Mine isn't run by an NGO though, so not 100% sure it is the same thing, but it starts next week :-D
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Re: Expert Patient Programme

Postby Zia2014 » Wed Nov 05, 2014 5:42 pm

Hmm. Well mine was today, and it couldn't have been further from slick and professional!

To start with the car park they tell you to use only have 5 spaces in it, so I had to drive round finding another and was late in :oops:

There were three people running it, not even halfway through one of them was sick and another looked after her, so we only had one person leading for most of the second session. I know that sort of thing happens, but it doesn't help. Two of them were also extremely patronising and didn't listen to what people were saying, so were constantly asking for things to be repeated.

There is waaaaay too much to cover in the time we have, for instance we spent only 20 minutes on sleep, something which badly affects most of us, in fact it was the second highest issue in the group after pain. Half that 20 mins was spent asking us for ideas. Now I'm not being funny, I want to hear others' experiences and ideas, but to spend only 10 mins actually hearing from the leaders and some of that was teaching your granny about eggs...

I will go for all the other sessions, and we've been given a coursebook which looks like it might be worth reading, but really it's not planned very well or run very well at all. I find it incredibly disappointing as there's so much we all need to get out of it :( It also means I won't get to go on the pain clinic one until I see her again (in over 6 weeks' time) and ask her to put me on one. So that's more time wasted.
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Re: Expert Patient Programme

Postby denys » Sat Nov 08, 2014 5:41 pm

Sorry to hear things didnt go too well for you Zia but hopefully the rest will pan out a little better as long as they are all fit and well :fingerscrossed: :fingerscrossed: :fingerscrossed: you manage to get into the pain clinic course
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Re: Expert Patient Programme

Postby Zia2014 » Sun Nov 09, 2014 4:37 pm

Thanks denys, I've left a message for the pain clinic.

Really the course just isn't good enough, there are a lot of other things that weren't good that I haven't listed - the two leaders being absent was the tip of the iceberg! Basically it falls between two stools and is attempting both. It wants to impart wisdom on a lot of different subjects, some relevant to all of us but most not. It also wants us to share our knowledge and experience. Within the timescale given, there simply isn't enough time to do both and cover so many topics. They would be far better off splitting it so those of us with similar conditions talk with a facilitator present, and then another course where they share more expert knowledge (which is more what the pain clinic do, I believe).

I was told I would need to learn about pacing, which is on the pain clinic course but not on the EPP at all!
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