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sloblock10

Experiences of self-management approaches

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sloblock10

Hello hello hello.

 

I am writing an essay of the self-management of long-term conditions. I have chosen to write about MS. Apart from liasing with an MSer in my workplace and lots of other research, i would also love to get more feedback from anyone whom has attended either an EPP course or the 'getting to grips with MS' course.

 

Any contact will be appreciated.

 

Thanks

 

sloblock10.

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cazza

Hi there, just today i have completed the 6 week Expert Patient Programme course.

 

I have really enjoyed it and would reccomend it to anyone who can access the course.

 

Cazza

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*A Christmas Carole*

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sloblock10

Hello there thank you for replying!

 

I am glad you found this very positive for you. If you don't mind me asking, was there anything that jumped out at you within the programme that you thought 'wow this is great' or perhaps not useful?

 

If it was all fantastic then fair enough and thank you for posting Cazza!

 

Sloblock10

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cazza

One of the most useful,yet simple things i found really good was the"action planning" coming up with the next plan,carrying it out.looking at the results and then problem solving.

The book we have received "Self-management of long-term Health Conditions"(ISBN:978-1-933503-12-7) is invaluable,it contains everything we did on the course and more and you can go back to it time and time again.

 

The other great positive was meeting and being with people in similar positions who, without indepth explanations,knew just what you were trying to say and understood you.

 

The course tutors (past course participents themselves) were just brilliant and knewexactly what we needed.

The relaxing atmosphere meant you could get up,move,walk,lay on the floor whatever you wanted at any time and no-one even noticed you or commented.

 

To sum up, it was altogether a great course, and we all said there should be a follow up course of some kind or more of these courses about.

 

Cazza


*A Christmas Carole*

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angela

Hi I'm sorry to say my experiance and others at the group I attended a few years ago was just the opposite, the woman that ran it was very patronizing and treated us like kids.

It started with us announcing our names and our medical conditions, we felt like we were at an Alcohol Anonymous meeting, boring waste of time.

I was one of few that completed the course thinking it must get better, 'WRONG'

 

Angela


Give a woman the right shoes and she can conquer the world! Bette Midler.

 

 

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Great Dane

Hi,

 

I am on week 5 of a 6 week so called Leisure & Exercise Group for MSers. Each week is dedicated to a 1/2 hour "topic" such as Fatique and one week we had someone from the Department of Works and Pensions talking about what help was available to enable you to stay at work. The rest of the time ie 45min is focused on exercise. It is quite good, but would have been much better had we been more people. We are only 3 people one of whom does not know whether she has MS - she does not really thinks she has any of the symptoms described, and the doctors have just said to her she probably has MS.

 

The physios who run this course are really nice, but I would really have appreciated to meet more people recently diagnosed, and it would have been great if there was a sort of social element to it - something like a cup of tea and a bit of a chat.

 

Great Dane

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sloblock10

wow thank you for your posts now this is why i joined a forum i'm so glad! i'm sorry if anyone had negative experiences but i thank you for revealing them as any worthy essay should present all sides of an event.

 

very interesting cazza the informal way you could lay around on the floor and get comfy.

 

angela yours sounded dreadful how interesting the differences in how they are presented will have an effect, i didn't think of that.

 

great dane-i know that 'getting to grips with MS' course contains tea and biscuits, something that was missing from your experience. I suppose the EPP courses will vary massively in layout considering they are nationwide and cover all LTC's. How a small thing like a biscuit break can make the difference for a lot of people in breaking the ice, making friends and actually enjoying the course!

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Nick

I attended the 'getting to grips' course soon after my diagnosis. A little helpful but at that point I felt rather like one of a clutch of bunnies caught in an approaching car's headlights!! The greatest part of 'self management' however came by getting involved with others who had already been through the mill. I'm an absolute fan of the help that comes from trying to understand your own situation. This does take a lot of time and lots of the right sort of effort. Near to impossible to explain unless you have been there. I personally dislike the thought that is would ever be possible by 'proffessional' or 'advisers' My experience was that the likes of the DWP and even GP's could provide little if any assistance in this area. The simple lack of understanding by the DWP about the hugely detrimental effects and the difficulties cannot be overstated.

Help for me came from caring people, pure volunteers and people with MS. Described here.

http://ms-people.com/forum/topic/13476-the-roller-coaster-ride/page__hl__%2Broller+%2Bcoaster

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Just another Warrior...........

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sloblock10

Nick your roller coaster story was really interesting it reminds me of a surreal dream sequence. I appreciate that it was your reality however. The lack of a personal element is a common theme in fact it is argued by some that the courses are disempowering, people feel cajoled into them, join them for the social element only and of course not everybody wants a 'hand' to manage. I take on board that you appreciate more the caring people you've met as opposed to professionals. Also i don't know if you know this but the nationwide Expert Patient Programmes are led people with MS, whereas the 'getting to grips' courses are not necessarily. i wonder what differences this makes?

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Sleepy
Scully

Hello.

 

I've not been on any courses. But I have found using the 'Spoon Theory' a great aid with coping on a day to day basis.

 

The Spoon Theory was originally written by someone with Lupus, but can be applied to any long term health condition.

 

Here. http://ms-people.com/forum/index.php?app=core&module=attach&section=attach&attach_id=540

 

For me, it was a case, and still is, of managing my MS on a daily basis. Like most of us, things change on a daily basis, almost hourly sometimes. And yes, unfortunately, it's often th case that only those with MS really understand how MS impacts us individually. The Spoon Theory which is subtitled 'but you don't look sick' just about sums it up really. Sometimes family and friends don't understand when we say. 'actually, I don't think I can do this, or go there today'.....

 

I also wrote a blog a while ago, which has proved useful to those newly diagnosed. My blog. 'If My MS Could talk' is here. http://ms-people.com/forum/blog/10/entry-240-if-my-ms-could-talk/.

For me, this blog tries to describe how mostly we need to hear what our body is trying to tell us and to act accordingly.

 

Good luck with your essay.

 

Scully


Edited by Scully
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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Hezza

Hi sloblock10 and :welcome: from me too.

I attended an EPP course several years ago and went on to become a volunteer EPP tutor. I had to stop tutoring when I moved from England to Scotland a couple of years ago but it is something that I would love to start doing again in the future.

 

The EPP course suited me because I really identify with the CBT type approach and tools that the materials use. I know that it isn't something that works for everyone though. I think one of the main things that I learnt through the course is that personalities, both of participants and tutors can make a huge difference to the dynamics in each session.

 

Good luck with your essay.

:hearts:

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Life is short. Eat dessert first. Jacques Torres

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eliza

Hi, well I have been on two, because I was greedy. No seriously I went on the second one because I was considering being a tutor myself. The one I went on was generic and they did go one about exercise a bit too much and the type of exercise I found would not suit everyone. There were no physio's there and the majority of the clients were type 2 diabetes. Which exercise can most definately help.

Exercise can help most people, but this was pushed a little too much. MS people have to do what they can when they can. Also at the first one I attended there was a paid tutor and a volunteer both who had some medical probs.

The second time they were both volunteer tutors and I did ask if they had any first aid training. the answer was no. which with a room full of people with various ailments I found odd.

The reason I did not volunteer in the end was for the interview I had to travel 50 miles which was taxi then two trains then a bus and a walk. Even though when trying to encourage me to volunteer they said everything would be local.Anyway, it is a really good course and everyone should be encouraged to go. Just dont let the moaners get you down. The ones with trivial complaints moan the loudest and the ones with serious issues, are usually jolly and friendly.

love Eliza

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Nick

Eliza,

 

I volunteer for a few things involving MS. Your comment regarding the difficulty of travelling and the lack of perception others have regarding this problem was very pertinent. Something I have also experienced.

The powers that be seem only too keen to support voluntary work in theory but there is little joined up thinking when it comes to these kinds of issue. I have found that by listening to newly diagnosed people and recognising some of my own problems and then being able to put forward how I feel myself can be a very powerful tool of assistance all round. The fact that a few people have managed to overcome such problems as transport issues to help others is remarkable! It says a lot for the power of individuals to make things happen despite everything

 

Nick


Just another Warrior...........

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sloblock10

Thank you if you've posted recently have been at work and university just checked my inbox. Will reply 'proper like' soon!

 

sloblock10

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sloblock10

Hello everyone!

 

I hope that you all had a good christmas and will enjoy your new year celebrations.

 

I am now carrying on with my work and would like to include some points mentioned here on the courses including lack of teabreaks, travel isssues and the enjoyment of meeting other MSers over being given information given by professionals.

 

I would like to use your information with consent so do not hesitate to post me if you object to my using any material.

 

Again this has been an interesting endeavour and a great help. Thank you again for contributing to the discussions.

 

All the best for the festive period!

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