Correspondence from the DWP for 2005

A friend was diagnosed with cancer some years ago (thankfully recovered now). Her GP immediately said that she should let her employer know she wouldn't be able to work for 12 months. "In reality, it's more likely to be a couple of years because of the surgeries and chemo, but let's not frighten the horses. Tell them 12 months for now."

It was 26 months. The employer was very supportive, and allowed her to set – and change, after she'd tried them for a while – her own hours. Less than three years after diagnosis she was back at work full time, and 11 years later she's still there, still making a major contribution to the company's success.

This level of understanding by GPs is what we need. Even if people begin to recover after eight or 10 months' rest, they need at least two years to learn to pace activity and manage the illness well enough to return to work. How many of us would be working now, at least part time, if we'd been given enough space to recover? How many billions would a couple of years' worth of sickness benefits save, at the scale of national economies?

 

That is a very cheesy photo. Who decided that stock photo of silhouettes of professional finanace / lawyer types in a very expensive building was appropriate to depict a (purported) charity for sick people, and what does it say about how they see themselves and their ambitions?

 

"the needs of people who have M.E. and are able, with the right support, to stay in or return to employment."
the problem with this sentence is it is the DWP who decide who is/isn't able

 

Some notes on this, but a lot was whited out and so difficult to really understand the full context of. I skipped over some bits at the end which were in colums, and the edges being missing made it a real chore to read.

7 of 34: Action for ME raising concern that NICE had removed reference to their CFS/ME guideline being relevant to the DWP's work. I feel like I must be missing some implication of all this, as I don't really understand what led to the letter being sent. Action for ME were writing on behalf of the "M.E. Alliance" and it made me deeply wary of having other charities join with AfME in any way that could allow AfME to present themselves as speaking for them.

8 of 34: Seems that the DWP don't really understand Action for ME's letter either.

11 of 34: Funny e-mail from Action for ME about them being confused by, on one hand, "the strong messages emanating from the DWP about CFS/ME as a hidden disability, and the illness appears well understood and is being handed sympathetically" on the other "the implications of the proposed changes to Incapacity Benefit are leaving us feeling very uncertain." So confusing - it's almost as if talk is cheap and the DWP is happy to bullshit gullible patient groups.

13 of 34: e-mail that's clearly to Mansel Aylward, mentioning his "great support for PACE over many years combined with his academic expertise and interest in this area". I've always wondered where his reputation for academic expertise in this area comes from, aside from his own self-written profiles.

17 of 34: e-mail from Action for ME about a meeting they had. The say that they "encourage our members to maintain a positive outlook, in the knowledge that over time most people's health improves" and "do not hold a dogmatic position with regard to either GET or CBT". The go on to say:

"We are though concerned that they should not be seen as a panacea, the evidence is patchy, and many people's experience of poorly conducted treatments has been harmful. It would be unhelpful to the therapeutic partnership necessary if people believe they are being coerced to have treatments.

"We are greatly concerned that those who are following "pacing" as their preferred route should not be thought to be incompliant with attempts to recover their health."

Sounds like they fell for DWP spin on incapacity benefit reforms: "Thank you for your reassurance that reports in the press were unrepresentative of the intent of DWP policy."

19 of 34 looks like Action for ME's comments on the DWP's draft guidelines for ME/CFS. It looks like the sides and tops have been cut off from these pages. More of Action for ME promoting the 'boom and bust cycle' understanding of ME/CFS. Why have they been doing this for decades when there's no good evidence for it? How can we get them to stop? Newly ill patients will sometimes struggle with finding out what level of activity is optimal for them, but a couple of studies show CFS patients have no more 'boom and bust' behaviour than healthy controls, and we have no good evidence the this pattern does play any significant role in maintaining CFS. p23 - another promotion of the boom and bust cycle as a "commonly accepted factor in the maintenance of the illness". p24: From AfME: "We emphasise the importance of a positive outcome and working [cut] a recovery over time". They do also criticise the DWP draft for presenting rehabilitation as universally applicable.

p26: In response to the DWP's 'Is CFS a physical illness' section:

"AfME's position is that M.E. is a physical illness.

When we have explained what this means we go on to add that there is no illness is the world that is exclusively physical or exclusively "all in the minde" and it is [...] commonly accepted that mind body splits are unehelpful to the understanding [...] illness, and M.E. could hardly claim to be unique in being exclusively physical.

Taking this approach may be a handy compromise, particularly when acknowledging [...] the complexity of the illness and hte research deficit.

I just don't see any other way of achieving an outcome that would would find acce[...]"

 

Not sure where we stand on being told to do GET in order to convince the powers that be that we have cooperated in trying to recover. I was already retired and in receipt of a pension when I became severe enough to need a diagnosis and treatments so I escaped this fate. When I was milder, I worked part time reducing my days in work as I got more ill.

Have now had a reply via my MP from Esther McVey re benefits and GET-June 2018 which might be useful to anyone being pressured to do GET before getting benefits.

Also anyone being rejected for insurance payouts because they haven't done GET - this could provide extra evidence.

We DO NOT have to do GET to prove our suitability for benefits.



Rt Hon Sir Edward Davey MP

House of Commons


6th June 2018


Dear Ed


Thank you for your e-mail OF 16 May on behalf of constituents who have contacted you regarding Graded Exercise Therapy (GET), the PACE trial and those diagnosed with myalgic encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

I note that you have contacted the Department of Health and Social Care directly concerning the PACE trial so will confine this reply to the issue of GET.

I appreciate your constituents’ concerns and can advise them that neither our Assessment Providers nor departmental decision makers use GET to assess claimants with ME/CFS when determining benefit entitlement.

I Hope this reply clarifies the position for your constituents.




RT Hon Esther McVey MP

SECRETARY OF STATE OR WORK AND PENSIONS

I hope this policy is being enacted on the ground, and no one is being pushed to do GET.

 

@Esther12, does this mean Action for ME helped the DWP in establishing their benefits-denial-process to ME? It doesn't entirely sound like that, but I see how Action for ME's partly difficult statements could be used for that.

 

I get the impression the Action for ME didn't (and don't) have any idea what they're doing, but see their role as being to try to ingratiate themselves to those with power and then try to moderate their positions through gentle persuasion. This has been terrible for patients as it empowers those who mistreat us to claim some engagement with and support from patients without giving anything of value away, playing Action for ME for fools who can be strung along for crumbs or convinced that some things that are bad for patients are really good achievements AfME should be proud of helping bring about.

Also, there are aspects of Action for ME's advocacy, that might be tied to their attempt to show how 'reasonable' they are (unlike those nasty 'dogmatic' other groups), that play into really damaging views at the DWP, etc, eg the promotion of a 'positive outlook', exaggerating the problems patients have with 'boom and bust' behaviour, etc.

It would be interesting to know if Action for ME has been paid by the DWP for work like SEE ME.

 

Thank you @Esther12

Indeed.

Thanks @Trish. Indeed very interesting!

 

That article is part of this article, "Corporate Collusion", by Hooper, Marshall and Williams, dating from 2007, it's long but good info and has contents list so you can dip into which ever bits you like:

http://www.margaretwilliams.me/2007/corporate-collusion.pdf

 

Hi, Clare here from Action for M.E. I'm sorry about the time it's taking me to respond to questions on the forum - I have had to focus on other things here in the office, but I am dedicating some time this week and next week to addressing issues raised here.

I have posted about SEE M.E. and how it was funded here: https://www.s4me.info/threads/not-a...hallenges-and-practice.4773/page-2#post-86346

I also want to be really clear that we were not subcontracted (or sub-contracted by sub-contractors) by the DWP to deliver this project. The patients who took part in SEE M.E. either self-referred, or were referred by a clinician at the North Bristol NHS Trust specialist M.E./CFS service, based primarily at Cossham Hospital. Some individuals, despite being eligible for SEE M.E. support, chose not to engage with the project before or after assessment. There was no penalty associated with this whatsoever.

EDIT: Forgot to add - happy to answer further questions about this project and its outcomes.