Parliament just slapped millions of disabled people in the face

A debate in parliament on Wednesday 5 June showed at best the lack of concern for millions of disabled people. At worst, it is a sign of the contempt hundreds of MPs hold their chronically ill constituents in.

Another day, another debate

A debate on invisible disabilities and access change happened in the House of Commons. It was about impairments that are not always visible in terms of their effects, and what can be done to raise more awareness of these.

Now, don’t misunderstand me. I am the partner of someone who lives with predominantly invisible disabilities and illnesses. So, I welcome any debate into the lives of chronically ill and disabled people and how government and society treats them.

Nic’s story

My girlfriend Nicola Jeffery is just one example of millions of people in the UK ravaged by chronic but often invisible diseases, illnesses and conditions. She currently lives with (yes, it’s gone up again since the last time I wrote):

  • Hypermobile Ehlers-Danlos syndrome (hEDS).
  • Myalgic Encephalomyelitis (ME).
  • Postural Orthostatic Tachycardia Syndrome (POTS).
  • Craniocervical Instability (CCI).
  • Atlantoaxial Instability (AAI).
  • Hypotension.
  • Megaloblastic Anaemia.
  • Peripheral Neuropathy.
  • Chronotropic Incompetence.
  • T3 Hypothyroidism.
  • Mycotoxicosis.
  • Deformations in left foot, left leg shortness.
  • Non-epileptic focal aware and tonic clonic seizures.
  • Polycystic Ovary syndrome.
  • Temporomandibular Joint Dysfunction (TMJ).

Nic is the perfect example of how invisible disabilities can severely debilitate someone’s life. She explained in her usual, eloquent but to-the-point manner in this Twitter thread. I suggest you read the whole thing:

In short, her treatment at the hands of government bodies, medical professionals and society more broadly has been disgusting.

But Nic’s story, which you can read here, is sadly like hundreds of thousands of other people across the world.

So, Wednesday’s debate was an opportunity for MPs to show their concern, understanding and wish for action to happen.

‘Rarely diagnosed’. Rarely debated.

As I tweeted, invisible disabilities are far from ‘rare’ in the UK. As Nic always says, they’re more ‘rarely diagnosed’:

Did MPs turn out in their droves?

Did they hell:

HoC Invisible Illnesses.png

Now, I know what you’re going to say.

All the white bits of paper on the benches are MPs who aren’t physically present but who wish to either vote or make it be known they support the debate. Ironically, they’re ‘invisible’ but still there.

This is not the point.

“Parasites”

As I previously wrote for The Canary, we’ve been here before. A UN committee accused successive UK governments of “grave” and “systematic” violations of disabled people’s human rights. It said they had caused a “human catastrophe”.

But the parliamentary debate into this was almost empty. As I wrote at the time:

empty seats… amplify the impression to the public that disabled people’s rights are a niche issue – one that doesn’t require the full attention of MPs – just a handful to show willing by the party… It gives the feeling that the “grave” and “systematic” violations of… 13.3 million disabled people’s human rights are not really that important…

 

The UN previously said there was a culture in UK society where disabled people were viewed as “parasites, living on social benefits… and [living on] the taxes of other people”. And by not bothering to take half an hour out of their day to sit and listen to a debate over one of the most serious issues in recent history… MPs merely add fuel to this fire.

The invisible disabilities debate was exactly this, with the usual exceptions.

Shout outs and shout downs

The ever-present and indefatigable Labour MP Debbie Abrahams has been a bastion of solidarity with disabled people, and was of course present. Sharon Hodgson and Justin Madders were also there, among others. The SNP’s Carol Monaghan and Angela Crawley were there, the latter making very good points about the Department for Work and Pensions (DWP). Some Tories were present, with Justin Tomlinson representing the government.

But the lack of MPs once again gives the impression that they really don’t care that much. It’s an impression that for many of them is probably spot on. Disabled people, as the UN alluded to, are viewed by many MPs as a burden to be tolerated. They are people who should be kept in the most basic of living standards by the state (if at all) and otherwise forgotten about. Empty benches on this debate were of little surprise.

Underwhelming

Of course, the end result of the afternoon was as underwhelming as the turnout. As Nic tweeted:

Yup, that was just about it.

Forget breaking down the miseducation, prejudice and stigma that exists in the medical world over countless invisible disabilities like ME.

Don’t worry about the scandal of “Fabricated or Induced Illness” (FII) diagnoses, where the state removes children from their parents – often because their disabilities are invisible and bodies like social services think the mothers are making their children’s illnesses up.

Let’s not debate PACE trial – one of the biggest medical scandals of the 21st century that has left people living with ME, EDS, Fibromyalgia and other conditions effectively being told to ‘think themselves better’.

We won’t talk about the scandalously low levels of research funding into diseases like ME, either.

Nor will we mention the barely fit-for-purpose Equality Act 2010, that is even less fit-for-purpose for invisible disabilities.

And let’s ignore the entrenched misunderstanding, abuse and neglect that exists in the very fabric of our society just because people living with invisible disabilities look ‘normal’. From disbelief and accusations of lying to being kicked off accessible seats on buses. It’s there, and it’s not invisible.

Wednesday’s debate was just another example in a long line of parliamentary lip service to disabled people. I applaud the MPs who were present. But the woeful turnout and the limp conclusions offer nothing to millions of people in this country, whom society has thrown on its scrapheap.

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.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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At #PMQs Theresa May threw millions of disabled people under a bus

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.

You can view the data I used here, here, here and here.

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.

Shocking abandonment?

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.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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