Action for M.E. hosts DWP spotlight training

Has anyone seen the content of the 'Toolkit' for professionals?

 

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.

 

I seem to remember they helped a few people who were grateful and had no objective measures or control group. I could be wrong.

 

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.

 

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.
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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.
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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.