Letter about ME/CFS and disability benefits in Sunday Times

My letter in the Sunday Times:
https://www.thetimes.com/article/7c...0?shareToken=09b55d03e27e4597cf9cff05d050de27

Published version:

Motability scheme​

As someone who has suffered from severe ME/CFS for more than 30 years, I can relate to Sir Ed Davey’s feelings of betrayal in having to list all the things his son can’t do when applying for the Motability scheme (news review, May 11). Because my condition was not classified as permanent, in the first ten years I was unwell I had to complete two long forms every six months to receive sickness and disability benefits. It is hard to convey the depths of despair I felt in having to use so much of my limited capacity to detail every thing I was unable to do, over and over again. As political rhetoric against people on disability benefits increases, I await another assessment with a familiar sense of dread.

Robert Saunders
Balcombe, W Sussex​

I would have liked to include more about the history and the need for more and better research, services etc. But published Sunday Times letters tend to be very short and I’ve learnt that you have a better chance of getting a letter published if you only make one point. Submitting longer letters can also result the them being heavily edited, which can be frustrating.

If you have a Times subscription (I have a discounted digital subscription) please consider adding an online comment below the letters.

This is the article by Ed Davey MP that my letter refers to: https://www.thetimes.com/uk/politics/article/sir-ed-davey-liberal-democrats-caring-8pfv9wrtg

Archived version:
https://archive.ph/YSEuk

 

For interest, this is the unedited letter I submitted:

Dear Editor, ​

As someone who has been severely disabled by ME/CFS for more than 30 years, I can relate to Ed Davey’s feeling of betrayal in having to list all the things his son can’t do when apply for the Motability scheme (https://www.thetimes.com/uk/politics/article/sir-ed-davey-liberal-democrats-caring-8pfv9wrtg). Because my condition was not classified as permanent, in the first 10 years that I was unwell I had to complete two long forms every 6 months in order to receive sickness and disability benefits. It is hard to convey the depths of despair I felt in having to use so much of my extremely limited capacity to detail everything that I was unable to do, over and over again, when I was struggling to come to terms with the devastating effects of my illness. ​

As political rhetoric against people who receive disability benefits is being ramped up once again, I await yet another assessment with a familiar sense of dread. ​

Yours faithfully,​

Robert Saunders​

 

Great job, @Robert 1973, and I'm sorry for your horrible experience. I suspect most people here on the forum know how it feels to have your nose rubbed over and over again in what you can't do, in order to apply for benefits. It's horrible.

 

It’s just something you have to accept if you send letters to newspapers for publication. They used to always phone to approve edits but they’re all running on tighter budgets now so it very rarely happens these days.

Often the edits are made to shorten the letter to fit the available space.

 

Thanks. Yes, I suspect many have had worse experiences pertaining to benefits than me. Thankfully all the benefits assessors who have met or spoken to me have been polite and apparently sympathetic – and I’ve been lucky until now to have financial security from my parents. It is just the system – no doubt influenced by Dr “benefits can make patients worse” W – which has been cruel.

In addition to the all the forms, my benefits were taken away and only restored after I took the DSS (as it was then called) to tribunal. I also had at least one unannounced visit from a non-medical DSS employee who interviewed me in bed. And I had scheduled visits from DSS doctors who assessed me in bed. Thankfully, they were mostly kind and considerate but I was aware that it would not have happened if I had a different diagnosis.

The tribunal was in the first year I was unwell, before I was bed-bound. I represented myself against the DSS lawyers and won. I remember politely but passionately telling the chair of the tribunal how I resented the fact that DSS had always appeared to treat me with a high degree of suspicion that I was making a fraudulent claim, or that I was undeserving of benefits due to my diagnosis. As a 19 year old former undergraduate, I tried to convey the devastating effects of my illness, the daily struggle to endure my symptoms, and my fear for the future:

“Some people never recover from this illness,” I told him.

“I’m sure that won’t be the case with you Mr Saunders,” he replied.

My impression was that his comment was intended as a compliment about my character but it betrayed a prejudice about people with ME/CFS, which I was then still half-guilty of holding myself (as I wrote about here).

 

I was also once interviewed by a DSS doctor while I was lying in bed, and he was charming. In his report, he recommended that I was fit to start work immediately.

The hard science can't come fast enough.

 

Thank you Robert for doing this. Great letter and I am sure a lot of us can relate.