A question from a Labour MP at Prime Minister’s Questions (PMQs) on Wednesday 8 May gave Theresa May the chance to throw millions of disabled people under a bus. But it also exposed an under-reported catastrophe for potentially hundreds of thousands of chronically ill people.
An “isolated case”?
Labour MP Sandy Martin raised the issue of a disabled constituent with a disabled child who had their benefits stopped. The mother lived with myalgic encephalomyelitis (ME) and fibromyalgia, and her child had hypermobility, therefore possibly a connective tissue disorder.
Listen to Martin’s question and May’s response below:
Martin took to Twitter to imply May thought his constituent’s case was “isolated”:
The PM may well indeed have implied Martin’s constituent’s case was ‘isolated’. But the reality in the UK for people living with ME, fibromyalgia and hypermobility/connective tissue disorders is very different.
A chronic epidemic?
Here are details about ME, fibromyalgia and connective tissue disorders. But all come with symptoms of generalised pain, chronic fatigue and cognitive impairment. All can be debilitating in many cases, leaving some people house or bed bound. And all are poorly misunderstood by medical professionals, government agencies and society.
Estimates put the number of people living with fibromyalgia between 1.5-2 million; the number of people living with ME at 250,000, and there are no estimates for the number of people living with connective tissue/hypermobility-related illnesses – although the Ehlers-Danlos syndromes (EDS), for example, are thought to affect 1 in every 5,000 people. So that’s around 13,000 individuals in the UK.
So, let’s use a ballpark figure of around two million people in the UK that live with either fibromyalgia, ME or connective tissue disorders. It’s probably an underestimate.
Just how many of these people does the Department for Work and Pensions (DWP) give benefits to?
The official figures show…
Based on my own analysis of the DWP’s data website Stat-Xplore the most recent figures show:
- 15,936 people with chronic fatigue syndrome (CFS) got Personal Independence Payment (PIP). The DWP uses the term CFS, not ME.
- 73,560 people with fibromyalgia got PIP.
- 11,349 people with connective tissue disorders got PIP. The DWP does not include EDS specifically in its data.
- 16,305 people with “Chronic Pain syndromes” (which would cover CFS and fibromyalgia) got Disability Living Allowance (DLA).
- 91,164 people with “Diseases of the Muscles, Bones and Joints” (which would cover connective tissue disorders) got DLA.
- 270,636 people with “Diseases of the Musculoskeletal System and Connective Tissue” (which would cover all of the above) got some form of Employment and Support Allowance (ESA).
That equates to the DWP giving benefits to just under 500,000 people with ME, fibromyalgia and connective tissue disorders – out of around two million people. Except it’s a gross over-estimate, as many more illnesses are grouped into some of the categories.
It should be noted that these figures are for claimant’s main reported disability. So there may be some people who get benefits with another condition aside from ME, fibromyalgia or a connective tissue disorder. But the figures still raise some worrying questions.
What we do know is that out of at least 250,000 people living with ME, the DWP gave PIP/DLA, the main disability benefits, to under 30,000 of them when it was their main disability. That’s just 12% of people living with this debilitating disease. To me, this doesn’t sound right.
It’s even more damning when we know that between 35,000 and 70,000 people in the UK have “severe” or “very severe” ME. This often leaves people bed-bound day in, day out. But it appears the DWP does not even give all of these people benefits.
Of fibromyalgia, possibly 80,000 people at best got PIP/DLA for it – out of 1.5-2 million people, or 4-6%.
We don’t know how many people with EDS get benefits, as the DWP doesn’t bother to even recognise it as a separate medical condition.
For ESA, if you put my ballpark two million figure of people in the UK living with ME, fibromyalgia and connective tissue disorders into the DWP’s figure, it would mean that only 13% of these people got benefits for these conditions. It seems unfathomable to think that this is correct.
Rejected. Refused. Millions missing.
So, Prime Minister, was Martin’s example isolated?
Your government’s own figures would suggest otherwise. It’s impossible to imagine how many people living with ME, fibromyalgia and connective tissue disorders do not get the benefits they are entitled to.
The ME Association reported in 2010 that:
our experience as a support charity is that people with ME/CFS have a great deal of difficulty in obtaining sickness and disability benefits when benefit applications are first assessed, or are later re-assessed – even when they are fully supported by their GP or consultant.
Although initial claims are often rejected, there is a high rate of success (around 40%) on appeal – indicating that eligibility criteria and medical assessment procedures are poorly designed for people with this illness…
The refusal rate (for ESA) here is probably even higher than 75%…
It seems that very little has changed. But May probably doesn’t see the irony that, during ME Action Network’s #MillionsMissing campaign week, she effectively ignored the hundreds of thousands of chronically ill people missing from the welfare system. She may as well have thrown them under the nearest bus.
I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.