Action for M.E. hosts DWP spotlight training

I found this example to be disappointing if that is the best they can do

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"Case example: adjusting expectations and building back up

Mary had experienced symptoms of M.E. for many years and had not worked for more than 12 months. She was
supported by SEE M.E. to explore her perceptions around returning to work, the kinds of work and use of skills
that she found satisfying, and how she could manage disclosing M.E. to an employer.
Mary began volunteering and with the help of prepared notes was able to negotiate a manageable number of
hours.

“The first part of the journey to where I am now was a process of readjusting my expectations and coming to
terms with being unwell. The holistic approach taken by the specialist M.E. clinic I attended helped me by looking
not only at how to improve my physical health but also encouraging me to consider new goals and a new way
forward, including thinking about work.

“I had missed working very much and it made such a difference to have support from a team who understood the
kind of barriers I might be facing in terms of returning to work. We were able to work together on coming up with
some positive solutions.

“Volunteering helped me to get out and about when I felt that I had lost a lot of confidence, and to get a sense of
how much I could do and what I would really like to do. I retrained in web development and editing so that I had
practical skills I could use to work from home as a freelancer.

“I think what I found most helpful was the practically applicable nature of the advice in regards to how managing
the condition fitted into real-life situations. I have felt much more able to broach the subject of my illness which
has, in itself, relieved large amounts of the anxiety associated with it. While I believe I was reaching a point of
acceptance in regards to my relationship with the condition I believe that attending the course and the advice I
received during the sessions was the necessary spark I needed to overcome that hurdle and as a result has helped
me move on with my life.”

A month after starting the volunteer role, Mary and her manager agreed that she was ready to increase her hours
and take on another shift."

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The person with ME is now trapped in an unpaid volunteering role that she could have found herself easily (I know because I have been able to volunteer in decades past when going through a mild spell)

and she has also expended energy (and I assume money) on retraining into a role (home based web designer) that is just about as rare as unicorns (to be able to get a proper living) in a market that is flooded with disabled people, students and parents and undercut from web designers abroad.

I think this may be the same organisation that did find a web job for one applicant but I know this market and how rare and unlikely this is.

See M.E seems not to understand the job market and they have now put this unfortunate woman in a position of wasting her time, energy and strength on pointless form ticking activities.

 

Reading this I think I begin to see a pattern. And also when putting it with other things we've noted about those who offer advice to PwME.

It really does look a lot like the ideas of how to advise come from a personal experience kind of place. That is to say, most people today who are healthy, energetic and engaged professionals are juggling a lot of balls in the air and trying to keep them from dropping.

They have work, family, friend,commitments and hobbies, leisure activities, children to care for etc. Their time is closely budgeted. They are constantly being reminded or reminding themselves to make time for themselves (to keep stress low) but continually schedule such moments with a 'stress relieving' activity as opposed to just hanging out. Many of us were such people once.

I wonder if people who have never experienced ME for themselves just can't fathom the idea that striving toward wellness not only doesn't work but is detrimental. And I expect it's advice that gets pushed for every illness out there that has a chance of survival. To strive toward wellness.

Who wouldn't want to do that?

No doubt when you spend your days constantly pushing yourself to get all the things done that need doing and mostly managing that you might have some cognitive difficulty letting go of that thinking. Not that I think this justifies any of the advise. It's their job to know better and to listen to the patient population.

Maybe the reality of this illness is so horrible that there's this idea that it just can't be so.

 

True, but one must take into account all the employment opportunities created for those exploiting her. It's a different sort of cost/benefit analysis. Those who take the benefit do not bear the cost.

 

How true this is.

 

http://merlinstandard.co.uk/downloads/Pluss - Merlin Assessment Details.pdf

Page 1

Name of Past, Present & Potential Supply Chain Partners Organisations Provided by the Prime Contractor - Action for ME

My questions

1. Have Action for ME contracted with Pluss?
2. Did the contract involve referring for DWP sanctions?
3. Do Pluss refer to the DWP claimants for sanctions?

As I understand it Pluss are a contractor for the DWP. They then might choose to sub-contract. As part of a contract for example, they could be obliged to refer back to the DWP people to be sanctioned. A sanction is a removal of income from the social security benefit for a defined period of time.

Even if a contract did not involve referring for DWP sanctions, why is a ME charity possibly contracting with an organisation that does refer for DWP sanctions? Sanctions are given for not taking part in mandated activities, which do not always take into account the claimants capacity to actually carry out these mandated activities.

The removal of income from a sanction comes before any appeal is heard. You must prove your innocence. This is a reversal of law that usually applies.

https://www.citizensadvice.org.uk/b...owance/while-youre-getting-esa/esa-sanctions/

 

AfME were present on this thread where I posted on 31st August 2018:

https://www.s4me.info/threads/actio...-e-position-statement.5532/page-6#post-100457

And I've posted directly to AfME here on other threads on the same point previous to that. Never had any engagement or response. Fingers in ears.

I used to think of AfME as a BPS front posing as a charity. They are now looking like a DWP front posing as a charity. Full credit to them for cutting out the middle man and moving with the times.

 

I no longer remember why, or what the evidence was, but I assumed that Afme was one of those organisations created, or taken over surreptitiously by, and bankrolled by, business or government interests to promote their view under the guise of something completely different. I think it was as a result of reading Vance Packard in the 1960's. These days the role seems to be filled by various "think tanks".

I may be doing them a disservice.

 

I wonder how potential participants/patients in this project were identified?

 

I remember coming across some info re the main guy who was at AfME who headed this up. He is now a work/life coach....

If I remember where that was or any more I will link to it...

I used to have a brain/memory!

 

It would be very interesting to know.

AfME provide support and (unless I'm mistaken) have a telephone helpline for members to seek advice in living with their condition and also seeking advice on filling in DWP forms....

 

Also @Action for M.E.

... if you were providing advice on behalf of the DWP, were patients/claimants provided with any independent sources of advice?

...if the clinic, DWP and the charity supposed to represent the patient interests were all working together, what steps were taken to guarantee there was no coercion, threats of withdrawal of medical support, benefits etc.

...what follow up processes are in place? Will those patients be monitored on an ongoing basis? What additional support, if any, do you propose to provide to any patient whose condition deteriorates as a result of pushing themselves in this way?

 

Thank you @JemPD for expressing in your post most/all of things that make me ANGRY with AfME. How dare they pretend to be on our (patients) side. They appear to be a load of self serving government boot lickers.

 

I was reflecting on my anger this evening & i think one of the worst things about this, is that if only their training to the DWP were true. If only rehabilitation were really possible for most of us, for me
How can they be so obtuse as to be unaware of how utterly heartbreaking it is, how devastating, not to be able to work, not to be able to rehabilitate & do something meaningful with my life
I was brought up with such a strong work ethic, i needed psych help to overcome the shame of not being able to earn, of having to claim on my National Insurance policy in the form of benefits. I have sobbed many a tear over the fact that no matter how much i believe in my self, no matter how much confidence i have or how positively/creatively/laterally i think & wrack my brains about what i could possibly retrain to do, despite my very best efforts, i still have to face the devastating consequences, the profound grief of not being able to even engage in retraining, let alone the work that would hopefully ensue.

And to have all that pain ignored, to have my reality wiped out & those with the power to make me destitute told that i could do it with the right 'support', it just cuts really deep, it rubs salt in a deep and gaping wound. And to have that done by a charity whose supposed reason for existence is support ALL PwME not just the chronically fatigued & anxious, it's just....well....

 

I think that's certainly the case for many people, they cant wrap their heads around the very idea of it.

Wow. That's disturbing.

 

https://www.pluss.org.uk/about/our-partners

(emphasis added)

Paul Davey
SEE ME Project Co-Ordinator

http://www.pauldavey.org.uk/about

Amanda Mason



page now unavailable and not cached on google. (search site:vitality360.co.uk Amanda Mason)
Presume she has now left. Website appears to be mid re-design.
From this saved fragment, we can deduce that she either joined Vitality360 after SEE M.E pilot, or was already working there.

Who are vitality360?

https://vitality360.co.uk/about-us/

And that's enough sleuthing for the day for me.

 

ok last one for the day

http://www.boycottworkfare.org/companies/pluss/

 

And just for those who don't know, Jessica Bavinton was a PACE trial researcher who has been heavily involved in promoting GET for a long time. Vitality 360 seems to do a lot of work with insurance companies, with another poster describing how their insurance company insisted that they work with Bavinton, and said that doing so had a negative affect on their condition.