Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 7, 2019.
Has anyone seen the content of the 'Toolkit' for professionals?
Sorry to be so negative, but based on some of the guff they've come out with before.... This just makes my heart sink.
Edit - had a scan - reminds me of IAPT - a person's clinician and employment advisor in close contact about you.
Although it acknowledges in the front that "some" people with ME are simply too ill to return to work, it does seem to give the impression throughout that most can gradually increase their activity.
just found it:
right, like the DWP are going to take that on board.
what's all this self-belief stuff?
it doesn't stop 'in the early stages'
haven't finished reading it but I can't see anywhere that it points out that this whole thing really only applies to people who are 'mild'.
It doesn't appear to mention moderate or severe or very severe.
Not helpful at all.
That is disgracefully misleading and damaging.
My employment goal when my ME was mild was to be able to work full time, do a postgraduate degree and move into a more senior role. The reality was that I struggled to get to work each day in a part time teaching job and ended up too sick to work. I was positive throughout, never gave in or gave up until forced to. How dare they suggest that a bit of encouragement to be positive, to set goals, and help with 'rehabilitation' was what I needed.
Also, it doesn't seem to mention anywhere that once the "client's" confidence and self belief has built up to enable them to tackle the challenges of returning to employment , they may well/are likely end up far more severely affected later on.
And this is supposed to be a charity working for in the best interests of the ME community....
Every time I think I've seen the worst of @Action for M.E. (the charity - not their representative on here, I hasten to add) they surprise you all over again. Not in a good way.
They say that the toolkit is based on the evidence, experiences and outcomes of the SEE M.E. service.
I seem to remember they helped a few people who were grateful and had no objective measures or control group. I could be wrong.
Among the things I would would like to know:
Names and experience of clinicians
Names and experience of employment advisors
Numbers of ME patients.
Who diagnosed the patients and what criteria did they use?
Ages of patients
How long had patients been ill?
How severely affected?
How many were still in employment when they attended this service?
Follow up information - 6 months, a year, more?
I'm sure there's lots more to look at - all anonymised, of course,but if you have evidence let's see it.
I am probably very cynical and jaded due to my battles with the DWP...but I do not believe the problem lies with lack of knowledge of individual assessors- it is that the system over all is stacked against anyone who is seriously ill.
My assessor completely lied about what I said, but that was less to do with the fact I have ME. and more to do with the fact she would have done the same with most applicants. In the case of PIP they are not supposed to be interested in your diagnosis, or prognosis, just what you are not able to do.
I was originally assessed at zero award, then after a long battle got the maximum- I think that says it all.
NB: I should add that I do not live in one of the areas of MUS, and have been well supported by GP, and Occupational therapist.
Is it just me, or has a lot of really annoying stuff been posted today?
I was going to write a post here, but I'm so angry I don't think it's a good idea.
Thank you to those of you who are able to keep their rage at bay sufficiently to make reasoned and reasonable posts. Perhaps tomorrow I'll be in a fitter state to join you... Though suspect not!
"Rehabilitation." What rehabilitation?? Every time I hear that word in regard to ME/CFS I want to scream. What planet are these people living on? The definition for rehabilitation: "the action of restoring someone to health or normal life through training and therapy after imprisonment, addiction or illness." What rehabilitation are they referring to -- CBT and GET? Lightning Process? We know how that has worked out. If there were rehabilitation for this disease, none of the millions of us disabled by ME or CFS for years or decades would be so. The belief that patients can be rehabilitated is why Aussies are denied disability benefits which they are fighting so hard to get, but so far denied. It is part of the reason why patients are despised by those around them because they could be rehabilitated and restored to their former lives if they really wanted to. All they have to do is get rehabilitated. Yah, right. What will it take for the powers that be to wake up to the true devastation of this disease and begin to understand that biomedical research into the basis of this disease is needed if patients are ever to have any hope of real help instead of these pie in the sky dreams of "rehabilitation."
Having made a grumpy comment about something from the toolkit quoted out of context I thought I would give the thing a fair trial by actually reading all 40 pages.
Here are some points that have arisen so far:
So on the basis of a pilot study they are presuming to give advice to every professional and employer who might be dealing with pwME including the DWP.
Good to see this spelled out.
Nope - for me it's rapid muscle fatiguability and PEM that are the killers.
Aaaaaaagh! That is NOT pacing, it's GET.
OK, I give up, I refuse to read any more.
@Action for M.E. PLEASE consult patients about this document. If it includes howlers like this it is doing far more harm than good.
Perhaps they meant to say that it's PACE-ing?
"... some people with M.E. are simply too ill to return to employment."
some people with ME? I thought the statistics showed that actually the majority of pwME are in this category? (don't have any links).
The whole document appears to me to be not to help the sufferer but to help the DWP.
OK, I did keep reading. There is some fairly sensible stuff about being there for the patient to talk through their employment options and listening, which I can see is helpful for people trying to cope with the effect of ME on their employment, but:
It's all focused on goals and building up activity which is not appropriate for most pwME.
Then there's a long section about a 'solution focused' approach, including thing like redeployment to more suitable work and taking a career break. Again I can see the value of having someone to help you through this process who knows about the law and benefits and can help you negotiate with an employer, and there are some potentially useful ideas about adapting work, but they only refer to adapting how you carry out specific tasks, not to the harder to identify cumulative effects of work activities that lead to later PEM.
The returning to work section is concerning as it is all built around the idea of planning ahead to increase activity:
So the focus is all on 'rehabilitation' and a 'graded activity plan'. This is only relevant for the few lucky people who are recovering from ME. I think it should not be being promoted as it is here as the normal pattern for ME. It's completely unrealistic.
So the whole focus with someone who is off sick and feeling rotten is to mislead them into thinking that the normal pattern will be that they can return to work, and all they need to do is phase it in and all will be well. And tell the employer to patronise them by 'celebrating achievements' and implying they should ignore difficulties.
So what happens to the majority who find returning to work is not feasible? Do they end up feeling they have failed?
In the section on Fitness for work reports:
I translate that as 'mislead employers'.
There is a section on sustaining work that recognises that fluctuations in both ME and in work and life demands make it difficult to sustain work even when 'reasonable adjustments' have been made. It suggests various phrases about monitoring and managing this without really saying anything helpful and ends with this patronising sentence:
OK, enough from me. My overall impression. Some good information on employment rights and in principle a good idea to provide support workers who can help people who want help to negotiate with employers and/or get the benefits they are entitled to. Having someone who understands can help through the process of dealing with a newly diagnosed case of ME and its impact on life, including employment could be valuable.
However, by focusing so heavily on goals, a misleading version of pacing that is actually GET, and the assumption that pwME will be able to go back to work, and all they need is a phased process and some adjustments is, for all but the most mildly affected, unrealistic.
To provide this as a resource for DWP workers is very worrying because it perpetuates the myth that the focus for pwME who are too ill to work should be on rehabilitation and goals. That is wrong and harmful.
I can see the outcome of this being that people being assessed for ESA (employment and support allowance) being placed in the WRAG (work related activity group) on the false assumption that ME is a temporary illness that most people just need a bit of time off and then a managed return to work.
Most pwME who have had to give up work and applied for ESA should be put in the support group who are not expected to be setting goals or planning returns to work, but are recognised as unable to work for the forseeable future. I hope whoever assesses my daughter's next claim for a renewal of ESA does not read this document, which, apart from one paragraph near the beginning, is all focused on getting pwME into work.
Seems to me, unfortunately, that AfME could really do with a name change to Action for Mild ME.
Separate names with a comma.