ME: Treatment and Research

Debate between Carol Monaghan and Kerry McCarthy

Thursday 21st June 2018 Westminster Hall

[Kerry McCarthy]

Yes. This is the problem we see over and over again with NICE: how do we value quality of life? We can look at the economic opportunities that are also lost if someone has to spend a lifetime on benefits rather than working and paying taxes, but there is so much more that they could perhaps have contributed to society and that opportunity has simply been lost.

In the time that is left to me today, I will mention the benefits system. We have already heard from other Members about it. Time and time again, we see that the assessments for employment and support allowance and for the personal independence payment just cannot cope with people who have fluctuating conditions, or with people who might be able to pass a test but who feel absolutely dreadful afterwards.

My friend scored zero on the test because she was trying to be as honest as possible, and if she was asked whether she could walk up a flight of stairs, she would reply that she could. However, on a bad day it would probably take her an awfully long time and she would collapse in a heap at the top. Actually, one of the reasons she was turned down when she went for the face-to-face assessment was that the examiners said, “Well, you look very presentable and you’ve washed your hair.” I know that she is bedridden for days at a time and cannot wash her hair, but clearly if she drags herself out for an assessment and is well enough to attend it on a particular day, she will try not to look like she has just got out of bed.

[Carol Monaghan]

Does the hon. Member agree that such questions are entirely unsuitable for people with many conditions but particularly for ME sufferers? “Can you walk up a flight of stairs?” “Yes, but it wipes me out for three weeks afterwards.” The examiners are not interested in the “but”. That does not figure in the questions.

[Kerry McCarthy]

Yes, we need a system that is sensitive to the people who are taking the test, rather than being a series of tick-box exercises—yes or no.

Action for ME gave some interesting evidence to the Work and Pensions Committee when it conducted an inquiry into ESA and PIP towards the end of last year. Action for ME cited one case study of a man who, as well as having ME, is registered blind; he can only just perceive some light. He said, “I’m not disabled by blindness. In comparison to living with ME, my blindness is just an inconvenience.” When it came to the assessment, of course, his blindness scored maximum points, but his ME did not register at all. He said, “Actually, with my blindness I can still go out and walk my dog, but it’s the ME that means I’m housebound. With blindness, I can use audiobooks, but my ME means that I just can’t concentrate for any period of time.” But one condition is accepted as a disabling condition, while the other is not. There is a perception that ME is just about being tired all the time but, as one ME campaigner said:

“The difference between ME and just feeling tired is the same as the difference between having a shower and drowning.”

I was going to mention the case of Merryn Crofts, but my hon. Friend the Member for Heywood and Middleton (Liz McInnes) is here and she is her MP. That is clearly an incredibly tragic case—the second person in the UK to have ME recorded as the reason for death on her death certificate.

Instead, I will conclude by mentioning the documentary “Unrest”, a screening of which I attended. Jennifer Brea, a 28-year-old ME sufferer, documented her condition with a camera when doctors told her that her illness was all in her head. Using Skype, she connected with others around the globe suffering with ME, and documented their plight. It is a powerful and moving documentary about the realities of life for many people with severe ME, and I would encourage anyone who is looking to gain a better understanding of the illness to watch it.