Fibromyalgia as a disability

The debate fibromyalgia on 15 January House of Commons I printed it all out It ended up saying that it was resolved that fibromyalgia This house considered fibromyalgia as a disability In parliament NOW DOES THIS MEAN THAT THOSE OF US THST HAVE BEEN DIAGNOSED ARE NOW CONSIDERS WE ARE DISABLED Any one no ?

[desquinn Partner Volunteer FMAUK Trustee]

backbench committee has no legislative effect

prior to their statement that you quoted the minister said it was already considered disabling.

And it is already considered am impairment in the act but the DWP assess you on what you can do not the name of your condition.

as per other discussions it is a complex situation and one conversation or meeting is not going to resolve it.

Terminal cancer is treated just as badly by the DWP so the issue is not condition specific. i.e. inews.co.uk/news/terminally...

[Hidden in reply to desquinn]

Thank you , I feel we are moving forward There are different degrees of pain for people who suffer ,

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

I agree we are moving forward and the awareness it generates means more people getting help.

My comments above are not meant to be negative but to add information.

[LadyJoro]

Unfortunately the assessors still seem to forget about pain and fatigue

[Al10]

Think it means nothing. Non binding votes and all that? Besides, Fibro can be disabling or it may not be. There are degrees of fibro so it is complicated. The positive is they recognised it was life long and therefore not going to simply get better and disappear. Recognising possible the effects of fibro is a first step.

Drs need to get up to speed with this and recognise we will likely need long term on going support.

If this thinking could filter through to the benefits system too, then the assessors could stop this constant testing to see if we are better yet? But it hasn't done. Sarah Newton said the assessors now understand fibro, Which would suggest the assessments should be better, Fewer fibros stripped of benefits on reassessment and they will be lengthening the time between assessments as recovery is not likely, but I don't see folks reporting assessors being any more understanding.

Folks are still reporting GPs lacking in understanding too. Again all new GP's have fibro training so it should be improving. But fibros will continue to be frustrated so long as there are no effective treatment or any cure.

[desquinn Partner Volunteer FMAUK Trustee in reply to Al10]

Al10 I think Sarah meant that the health professionals had the information available to them. I know the information they use on fibro is of a good standard as we edited it for them.

But having the information is not reading it or appreciating it. Also if there are external pressures like targets and management oversight then training resources and experience will mean little.

Recent story was about an assessment basing their finding on a 24 year old report from a claimant rather than current evidence. The process itself and the culture is the issue!

[Al10 in reply to desquinn]

I agree, you can inform and train all you like, but you don't necessarily change attitudes or beliefs. Reading a document doesn't change company expectations either. It's likely just denying disability more professionally, based on current training.

24 years? Goodness that was generous! An oversight maybe? 6-12 months was out of date when I asked! Assessors and decision makers seem oblivious to how long it takes getting appts, investigations etc and how they do get to a point where they have exhausted all avenues and in so many fibro cases, Fibro isn't going away. There is no cure!!!

Having a yearly assessment or less, means regardless of expectation, you must keep badgering your poor overworked GP else there will be no up to date info. And this even though you know the GP can't offer anything more than has already been offered and doesn't work. I don't want to keep hearing they can't help. It's upsetting. Best to keep distracting myself elsewhere.

[opalfruits in reply to desquinn]

Is the information that FMAUK edited for assessors available anywhere that you know of? I'd be very interested to read through it if it's possible.

[desquinn Partner Volunteer FMAUK Trustee in reply to opalfruits]

not sure we can share it under copyright. We will be reviewing it again this year most likely so can ask when we do this.

[opalfruits in reply to desquinn]

That would be great if you could.

I might put an information request in via What Do They Know in the mean time.

Thanks,

E

[desquinn Partner Volunteer FMAUK Trustee in reply to opalfruits]

Its called "Fibromyalgia

(Module 14) MED/S2/CMEP~0035"

Centre for Health and Disability Assessments operated by Maximus.

[opalfruits in reply to desquinn]

Thank you!