So Sad: Been told the 'powers that be... - Fibromyalgia Acti...

Fibromyalgia Action UK

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So Sad

Collie-Dog
Collie-Dog

Been told the 'powers that be' are stopping my Pain Group sessions for people with chronic pain at the end of the year. No one has asked the group who attend what we have got out of going, what benefits etc. Just money saving? False economy, why stop something that is working? What is the alternative - more medication, more GP visits, it does not make any sense. All the patients are horrified that this is stopping, as we all have and do benefit from attending, learning such a lot and talking to other patients with similar problems. So sad, as chronic pain can only be managed at the stage I have reached and that is exactly what the groups did for me. I for one cannot manage without this vital treatment.

10 Replies

So sad to read your post it is probably money orientated. I used to receive electro acupuncture at an outreach clinic. The advice from the pain nurse and specialist was just as valuable but when the specialist retired they missed that as an excuse to stop the outreach clinic.

Is there any way you as a group could still meet up? I know it isn't quite the same scenario but I was in a book club run by a charity and when funding for the charity was withdrawn we were given notice the sessions would cease. We were quite easily able to find a room in a church to hire for a very reasonable sum(none of us work) we cover it with a small weekly subscription and actually have quite a bit over at the end of the year to give to charity. Just a thought. Hope you can find a solution.x

Collie-Dog
Collie-Dog in reply to rosewine

Hello I was allowed electro acupuncture and it really helped, meaning I did not need to take the toxic oral medication but I was only allowed 6 NHS sessions! That is why these sessions are so important to us. We hope to continue meeting but it would be better with some professional guidance I think. Thank you, some good ideas and all the best.

rosewine
rosewine in reply to Collie-Dog

I agree those acupuncture sessions need to be on a regular basis. Initially I was given them every two weeks, then once a month and I could feel the difference. They then said I could have 4 a year and I thought better than nothing then NHS cuts and one every 4 months. Twice I wasn't sent a new appointment a d when I rang up found out I had been taken off the list for supposed none attendance and even when I proved I had attended as there were only so many appointments had to wait another 4 months. It was ironic that the wonderful pain nurse said the machines only cost the NHS a few hundred pounds and a none medical person could easily be taught how to operate them so if you had back problems (my problem) someone at home could be taught and in the long run it would have saved the NHS money and probably enabled the patient to take far fewer medications.x

Collie-Dog
Collie-Dog in reply to rosewine

I agree anything that stops us having to take the toxic medication must be a help. I was given 6 sessions of the electro acupuncture then, "Bye Bye". So sad when it helped! and as you say in reality is not an expensive treatment. Take care XX

So sorry Collie,

I understand how disappointed and angry you must feel.

Speaking for myself, I gained so much from the course and my group and I would have felt lost but after the 8 weeks

of my Pain Management course, some of us have stayed in touch. We have our Croc Club watsap chat line and we message regularly.

On the last day of the course, we were visited by 2 ladies who had done the same course 2 years ago. They realised when theirs ended that they would feel lost without the support, so they set up their own pain management group and they meet up every fortnight.

I went along on Monday and was made so welcome.

We even did the exercises which Graham, the physio had taught us!

It was great to be back in the company of people who understand and not having to explain or apologise.

There’s also a group run by volunteers,(chronic pain sufferers), who meet weekly in a room at the Health Centre where we did the course.

One group has a structured meeting with an agenda and the other is totally relaxed. Some people have brought their dogs in, some sit colouring . Some just enjoy chatting , having a brew and a giggle.

Is there any reason why the members of your group cannot start up your own meetings?

I’m so glad I have my ongoing support to keep me sociable.

Wishing you best of luck.

Jan xx

Thank you for your response, you have given us lots of ideas to discuss and hopefully carry out thank you so much. We feel insecure on our home as the medical person taking the meetings, (under the NHS) is excellent but this seems to be happening and we don't want to rely on medication again.

Hi

The suggestions from Rosewine and Bobbasett are very through. I would add that if you have a number of people involved and geographically larger than the average town more than 1 group is formed as Chronic pain is a growing problem. Chat up Community volunteering(CVS) they are great at finding cheap or free spaces. Some large shops have community use room bookings for free! It is not sad it could be exciting and fresh.

feistyfibro74
feistyfibro74 in reply to skit

Community centres are free. Maybe it depends with the area. As long as they know what you are meeting up for.

Its sad that no one listens .Very soon they will bunch us in to a mental facility . I have accepted that not even your GP cares. But God does and for me that is great. I guess we need a chronic pain patients movement. I hope and pray you all have a pain free blessed day...

So true.

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