Action for M.E. hosts DWP spotlight training

Andy

Andy

Retired committee member
A range of people from the Department for Work and Pensions had the opportunity to learn more about M.E. and its impact on claimants, in a training session led by Action for M.E. just before Christmas.

As part of the DWP’s ongoing “Spotlight” training series, 125 work coaches and disability advisors dialled into the telephone session, with our welfare benefits advisor Sophie Knight giving an overview of the condition and the difficulties people with M.E. can experience with employment. DWP staff have also been sent a link to our SEE M.E. toolkit, which aims to help them support people with M.E. more effectively.
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https://www.actionforme.org.uk/news/action-for-me-hosts-dwp-spotlight-training/

 
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.
 
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Another person with M.E. who is reluctant to take on more activity may have previously experienced bad set-backs and relapses in the past. However, with the right clinical guidance and practical workplace adjustments, they may have capacity to sustain a little more, should they choose to do so.
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reluctant?

It is crucial not to make assumptions about a client’s experience of M.E. and how they are managing it. Take time to listen to and really understand your client’s unique personal experience. Investing time into this individualised assessment approach is essential to building the trust and rapport you need to provide effective support.
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right, like the DWP are going to take that on board.

Supporting self-management strategies
To grow in self-belief and confidence to achieve their employment goal in the face of the uncertainties, stigma and discrimination that can surround M.E., your client will benefit from your support to build awareness of how they can tackle and manage specific work-related challenges.
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As already explored, uncertainties about M.E. can also undermine your client’s confidence and self-belief to work or seek employment, and also to engage with the services available to support them to do so.
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what's all this self-belief stuff?
Much of the planning process starts before a person feels ready to work.
During the early stages of symptom management or recovery and rehabilitation it may be that most of your client’s energy is taken up with learning their baseline and how to manage symptoms.
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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.
 
To grow in self-belief and confidence to achieve their employment goal
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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.
 
Sly Saint said:
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.
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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....:banghead:

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.

Edited -clarity
 
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.
 
I was going to write a post here, but I'm so angry I don't think it's a good idea. :mad::mad::mad::mad::mad::mad::mad::mad::mad::mad::mad:

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! :rolleyes:
 
"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:

Introduction
Many people with the chronic neurological condition M.E. want to work and are highly motivated to seek, return to and sustain employment. However, too many people with M.E. experience a lack of understanding about M.E. and its impact, and too great a distance and disconnection between the services offering them support.

In response to this need, Action for M.E. delivered Support, Empower and Employ M.E. (SEE M.E.), a pilot specialist employment support service for people with M.E. living in Bristol and the surrounding regions, from 2015 to 2016. This was embedded within Bristol NHS specialist M.E. service and integrated with local employment support services.

The information and advice presented in this toolkit is based upon the evidence, experiences and outcomes of the SEE M.E. service, and aims to improve employment outcomes for people with M.E. by informing the practice of those professionals working with them.
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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.

It is important to understand that the guidance given in this toolkit will not automatically result in your client with M.E. being able to sustain or return to employment. Despite practicing pacing (see opposite) and deploying self management skills shared by specialist clinicians, some people with M.E. are simply too ill to return to employment.
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Good to see this spelled out.

Myalgic Encephalomyelitis (M.E.) is a chronic, fluctuating, neurological illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
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Nope - for me it's rapid muscle fatiguability and PEM that are the killers.
 
People with M.E. use a number of approaches to self-manage symptoms, including a structured way of balancing activity and rest known as pacing. Patient surveys repeatedly report pacing to be the most popular symptom management approach used by people with M.E., and its key principles are:
• establish a baseline (the level at which you can maintain a particular activity on both a good and a bad day)
• increase activity from this established baseline by no more than 10%.
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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.
 
"... 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:

Interventions
• Help your client with M.E. reflect on their skills and what they want/need out of future work.
• Increase understanding and confidence about what they can do by helping them to access volunteering and/or courses. These can be short or online and not directly related to their employment goal. This provides evidence of their reliability to employers and themselves and also be an opportunity to try out ways of working that support their condition management.
• It can help build capacity and confidence to start by agreeing small activities or splitting larger activities into stages.
• Encourage the person with M.E. to think of any work-related activity as part of building up their baseline and encourage them to work with their clinician to do so appropriately.
• Explore the possibility of starting with part-time hours to build their baseline and confidence. Supporting your client to check their eligibility for Working Tax Credits or Permitted Work can help them make best use of their energy
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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:

When supporting a client with M.E. to start planning their return to work, it can be difficult to gauge the right timing – too early and it can feel overwhelming, but leaving it too long can create anxieties for your client and their employer.

We found that starting the planning process early on helped maintain a positive dialogue between our clients and their employers, provided a longer term, realistic view of the process was maintained. Concrete solutions help to bridge the path back to work and build confidence that it will be successful and sustainable. It is also important to remind your client and their employer that the plans are a starting point to be reviewed regularly and adjusted if needed.

Fitness for work is not an all-or-nothing thing and an effective return-to-work-plan builds up gradually in terms of hours worked and duties undertaken, as well as testing out any reasonable adjustments. This plan helps your client with M.E. work within their baseline and to slowly increase in accordance with any pacing or graded activity plan.
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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.

Interventions
• Start to explore return-to-work planning sooner rather than later, even if it is a case of introducing the subject to be followed up at a later meeting.
• Consider with your client how clinical expertise can be requested and incorporated.
• Explore with all parties what a phased return could look like beyond the standard as defined by the organisations policies and procedures.
• Reassure your client that a phased return and return-to-work plan is a way of formalising a gradual return to the workplace that supports their condition management, rather than forcing them into returning to work too soon.
• Encourage a pro-active, solution-focused approach that helps an employer understand how they can help most effectively.
• Support your client and their employer to fully and separately consider how stages of a phased return-to-work plan, flexible working arrangements, reasonable adjustments and Access to Work might contribute to an effective plan.
• Work with your client, their employer and other experts (eg. clinicians, union representatives) to draft, negotiate and review the return-to-work plan until all parties feel that it is appropriate.
• Recommend that your client’s employer build in reviews which celebrate achievements and support positive changes where needed, rather than look for failures and problems.
• Support your client and their employer to consider how best to communicate to other employees that which is necessary for supporting the plan and any impact upon colleagues.
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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:
In the absence of a clear prognosis for recovery, many employers are left with a poor view of an employee’s ability to return to work. Be as clear as you can be about what you perceive is the positive pathway forwards for your client in line with their symptoms and abilities. Even if you cannot put your finger on exactly how much they might improve and over what timescale, you can state your expectations.
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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:
Ensure that an appropriate balance between work, rest and play is maintained over the longer term.
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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.
 
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