As to the way forward, it is a confusing situation but there has been no change of the equality act or any other legislation. A back bench meeting like this cannot change the law and they have passed the motion in front of them
The minister said in the debate that fibromyalgia could be a disability under the act already but people are treated on a case by case basis so it is unlikely to change anything in DWP processing any time soon.
This was great for awareness and momentum but more needs to be done.
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desquinn
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I wonder now then can I let the Andover group know the outcomes before official statement from @FibroPetition - as you say, it is definite back benchers cannot make these changes? .
desquinnPartnerVolunteerFMAUK Trustee in reply to Mdaisy
There is no clear outcome as far as I am aware just yet
Hi thank you for the up date I think we will be waiting and waiting for years sorry fed up with the whole fibromyalgia will it wont it.
desquinnPartnerVolunteerFMAUK Trustee in reply to Hel52
having been involved with the chairty for many years I have seen many peaks and troughs and this is something that is worth appreciating at the moment.
we do not focus on just the benefits side of things that recognition as a disability tends towards. We are interested in improving how health professionals interact with patients and raising general awareness and encouraging people to participate in research.
The awareness of this is very important and we should keep the momentum going but appreciate what it has achieved.
Watched the debate. Thanks for posting. I would have missed it. Interesting, heartfelt, hard to listen to at times, overwhelming even. I had to listen in little chunks because it was kinda upsetting and I didn't want to feel low. It's kinda got me on a bit of a rant? Or just thinking again about this horrid thing which is Fibro.
At the end of the debate, Sarah Newton nicely summed it all up. No need to worry, as of the last year, all Assessment staff are now trained in fibro. (so no worries they will be getting anything wrong now?) Ditto, all new GP's. (since for quite a while). The minister and her department will be happy to listen and learn, but rest assured, they are on it, and done it, already! (So fibro's need to be reporting on the difference, now all staff are all up to snuff with Fibro. There should be no more bad decisions happening!!) Did she mention research? I don't think she did?
Concerns over Brexit and our researchers having to work alone with their small (too small) UK only Fibro budgets. Fears that they will no longer be able to pool talent and budgets to make better progress.
Like many others I expect, I'm concerned as to what training assessment staff are getting. It seems to be a condition that is hard to grasp if you have not either lived with it as a sufferer or alongside someone with it. The speakers talked of Fibro being life long and having no effective treatment, (just stuff Dr's suggest folks might try that MAY help) and no cure. Yet fibros are called each year for assessment, as though they are going to get better?
They say they know it is considered invisible and about it's fluctuating nature. What you see is not actually, what you get, yet assessors still discuss what they see, (need to see if this is still happening) and not so much, what has been written by Drs and others. Fibro is LIFELONG, yet medical info for assessment goes out of date in six to twelve months. Again, it is as though assessors are expecting Fibro to just disappear and the information to become irrelevant.
Where will this life long and life limiting condition go? We may get times when we feel better than others and that is nice, but it isn't a cure. Having benefit to cover decent food, treatments, supplements, physio, hydrotherapy, or PIP to allow a person to work a bit too, can make a difference to how a person with fibro copes. But it isn't a cure. These things are then required long term to maintain that level of fitness and progress. At next assessment, removing the benefit (because, with the benefit, the person is a little better) simply removes the progress. I think Fibros should be flagging these issues up at assessment, to ensure these issues are being fully understood. The assessments do seem to assume recovery, and in a life long condition we have to ask, what kind of 'recovery' is enough to justify removal of any benefit?
Is it fair to have people forever see-sawing up and down with their health? As we fibro's get older, the see-saw tends to go up less and down more as age and fibro, conspire to rob us of the ability to recover. For our health and sanity, we do need an even keel.
Is it any wonder that Fibros get so anxious, when their wellbeing has depended so much, on the capricious whims of the DWP system? I fear too many of us fail to reach any even keel, because of how damaging it is to have benefits removed and how long it takes to recover, (if recovery is even possible once damage has been done) once benefits are reinstated. Never mind the impact of stress brought on by Appeals and tribunals. The fear of impending assessment also, surely puts the brake on any kind of a recovery? It was well understood in the debate how damaging stress is to the Fibro.
But, like I say, we are told the assessors are now fully trained in Fibro, so we fibros need to ensure they use that training to protect the health and wellbeing of fibros, and report back, if assessments have not actually improved.
It can't be unreasonable to expect decent treatment from the DWP esp when the NHS is so limited in the help it can offer. The ability to keep a home, have warmth, decent food, are basics, all humans need. For fibros getting cold is a disaster. Having stress over rent or ability to afford our accomodation makes our fibro flare. Food that suits our jippy tummies can be expensive. And then there is the 'extras'. Ability to access a social life, transport, complimentary therapies esp when nothing the dr has to offer helps. We all need things that make life worth living. Remember, Fibro is forever, not just for Christmas!
Someone brought up forums discussing suicide(a bad thing) but didn't follow it up. And no-one else did either.Disappointing. Fibros suffer greatly from despair. Fibro is unrelenting and people, even our GP's, don't seem to get that we can cope for a bit, with a lot. But we can't always, cope with a lot. We need support. Fibros more than other conditions die by suicide. It must be recognised and taken seriously. When someone says I can't cope with my Fibro, they do need help. This is why I feel very strongly, the system needs to recognise that Fibro is a chronic, lifelong condition and as such those suffering do need continuity of help. Winning benefits for one year, when I hope to live 40 more, is not that helpful. It leave us with the stress of what happens next year and the next. Hydrotherapy for 4 sessions is nice, like any present can be nice, but it needs to be ongoing to really make the difference.
When I had a cold a few weeks ago, folks were really sympathetic. Poor me? But, I just had a cold. A cold gets better. A cold is gummy and sweaty and head-achy and shivery, and it's horrid, but nothing, to enduring Fibro forever. Even when the coughing starts and it hurts your tummy and you can't speak, it's still 'just' a cold and gonna get better!
Where is anyone saying, oh you have fibro, that's tough, I understand? Folks actually said, oh good, your cold is better! Like I was better!!! I even tried saying, a cold isn't so much of an issue, we all all know, it's just yuck and one of those things. It's the fibro I have difficulty with. You have no idea of how fibro limits and challenges me. And I got, yeah yeah, but now you're better, you can.... Like I was better? Is it just me that gets really frustrated dealing with people who refuse to, (or can't) understand fibro, even though it is actually their job to? Grrr!
Really good Fibro has had an airing. Needs doing again soon I feel. Meanwhile, ME is going to be debated soon. Could someone remind us when so we can watch? Be interesting to hear how that one goes as it is so similar.
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