Doug Paulley's blog

disability, data protection, activism and other such

Disabled People Deserve Equal Access to Critical Care – Judicial Review

Posted on by Doug Paulley

Many disabled people may be left to die so that others can be saved. That’s the impact of likely coming increased demand for hospital treatment, intensive care beds and ventilators, according to multiple reports in the Press.

Cartoon: Wheelchair user next to a hospital bed, pointing to a notice saying "Do Not Resuscitate". He is asking a nurse,, Who is responsible for that? The Grim Reaper, with a white coat and stethoscope, is stalking away.
With thanks to Dave Lupton / Crippen Cartoons for the excellent cartoon.

Guidance by the National Institute for Clinical Excellence, from the British Medical Association, letters from Clinical Commissioning Groups to care homes, letters to individual disabled people from GPs, the NHS’ “Decision Support Tool” and others, all suggest that disabled people will be left out in competition for treatment with able-bodied people. Whilst there has been some correction, I still have no confidence that disabled people will have anything like equal access to critical care services.

The BMA advice is stark:

Doctors would be obliged to implement decision-making policies which mean some patients may be denied intensive forms of treatment that they would have received outside a pandemic. Health professionals may be obliged to withdraw treatment from some patients to enable treatment of other patients with a higher survival probability. This may involve withdrawing treatment from an individual who is stable or even improving but whose objective assessment indicates a worse prognosis than another patient who requires the same resource.

The nature of many disabled people’s impairments is that compared to non-disabled people, recovery may be less likely, take longer or be “incomplete”. Under this guidance, it would appear that disabled people would not be offered intensive treatment they may receive outside a pandemic. I don’t think that disabled people’s right to life should be written off in such a manner.

The Government could and should have published guidance on how doctors will decide which people will receive life-saving treatment during the pandemic. They haven’t done so. This must be challenged.

So we’re threatening the Government with judicial review. I’m one of four claimants working with Rook Irwin Sweeney Solicitors and barristers Steve Broach and Ruth Keating of 39 Essex Chambers (all acting pro bono i.e. working for free – I’m incredibly grateful to them!)

We have written to the NHS, the Government and the British Medical Association threatening judicial review for failing to respect disabled people’s right to life. We have requested they respond on or before Thursday 16th April, or we will be forced to challenge their failures through judicial review in the High Court.

I very much hope that the Government, NHS and BMA see sense, and produce guidance on life-saving treatment prioritisation. Such guidance should safeguard disabled people’s right to life.

Read the Press Release on the Judicial Review (PDF format)

Jon Hastie, who made this video, isn’t part of this legal action, but I think he makes very clear why the action is necessary.

“Passing out”

Posted on by Doug Paulley

Passing out sometimes looks peaceful, but never feels it.

Front cover of book The World I Fell Out Of, by Melanie Reid“The World I Fell Out Of”, by Melanie Reid

I read a passage in Melanie Reid’s excellent book that describes the sensation well. I am blessed in that I don’t experience the vomiting as much and my autonomic problems are not caused by spinal injury, and I am usually too hot rather than too cold, but the general visceral experience is absolutely as she describes.

You lose your limbs, your motor function and your autonomic nervous system, which automatically regulates both your blood pressure and your temperature when you are healthy. … Without temperature regulation, you feel permanently cold – that is, until you feel unbelievably hot. And without any controls over blood-pressure regulation, especially if you are as tall as I am, whenever you are raised into a sitting or standing position, your blood rushes into your feet and you pass out. There were times when my bradycardia, low heartbeat, was down to thirty-four beats per minute, enough to call a crash team for a normal person. In the spinal unit such things were unremarked. But fainting was a new discovery for me, a horrid one. It awakened memories of school, where it was always the pretty, delicate girls who used to faint in assembly. As predictable as Victorian heroines, they would fold to the floor with a little sigh during prayers, to general commotion, and lots of attention from the boys, while us roughtie toughtie hockey types in the back row would mutter cynically, ‘That’s Pauline off games’ or ‘I suppose it’s her periods again.’ Of sympathy from us, there was none.

Only now, decades later, I can understand just what those poor girls went through, because I’d turned into the same wan, pathetic creature, turning sheet white and swooning at the slightest provocation. Fainting felt as if death was ripping you out of life and you could feel it happening but could do absolutely nothing about it. There was a dreadful inevitability after I was hoisted out of bed and into a sitting position – visual disturbance, flashing lights, waves of nausea – and then rapidly everything went black with dark green blotches. Voices dimmed and retreated into the distance; I grew hot and claustrophobic; and if no one could tip my wheelchair back in time, and elevate my legs in front of me, I would start moaning involuntarily, flail my arms in distress a bit, and then vomit, mournfully and quite helplessly, into my surgical collar. … Fainting was debilitating and I was so prone to it that in those initial weeks any attempt to get me into a shower chair was ruled out. When they did try, I was a time-consuming failure, fainting and vomiting and fit only to be hoisted back into bed to recover. Shower chairs are minimalist plastic-seated wheelchairs, designed by the devil in a bad mood. I came to hate them with a terrible intensity, for the effort and suffering they brought me. And I still do.

The rest of Melanie Reid’s book also rang great bells with me. Particularly her description of life on the rehabilitation ward, which nearly exactly mirrored my experience on another such; the generally excellent staff stymied by pitifully limited resources and fundamentally undermined by the disproportionate impact of the multiple seemingly small instances of staff cruelty, both unconscious and conscious.

I don’t share some of the other elements of Melanie’s worldview, particularly her non-social-model outlook nor her clear disdain for disability rights activists. But then, not all elements of impairment are social model, and her description of some experiences, situations and reactions were and are painfully reflected in mine, in a way that makes me think: “Somebody Else Gets It.”

I am grateful for the description of passing out, and the precursor symptoms above. I’ve used it today to describe to carers what it’s like.

LNER wheelchair spaces

Posted on by Doug Paulley

I’m getting flak on Twitter for posting this:

The standard arguments are coming out – “parents should be allowed to use it unless required by a wheelchair user” “why didn’t you ask staff / passenger to shift” and then more unpleasant trolling. A near “Line” on Complaining Cripple Bingo – I spot:

    • *Claims disabled person only needs to ask and access obstructions will be removed*
    • “You have psychological issues”
    • “If only you had asked nicely” “You didn’t ask nicely enough”
    • *Provide incorrect or inappropriate adjustment* *Ignore disabled person explaining this*.
    • *Claims you weren’t actually negatively affected because you were able to work round the fail*
    • *Misrepresents what you said to discredit you and the validity of your complaint*

All of that, however, is a distraction. The wheelchair space must be kept clear. Robin Allen QC put the argument particularly well, during the Firstbus case:

The case has in some parts being identified as being about competition between the rights of wheelchair users, and travellers with children and buggies. But we say that is not the right way to view it.

We do not say we do not suggest that parents traveling with buggies don’t have the need for assistance, or to be taken into account. We do not suggest that bus companies shouldn’t consider about the general public.

As it is, what we say, and we’ll go through this in detail of course in the submissions, is that we have a particular problem, wheelchair users, Mr. Paulley in particular; and we have been given a particular solution. And we do object to the solution to other problems being grafted on in some way that undermines the strength of the solution which we say parliament has given, through the various bits of legislation which are set out in the case.

Non-disabled people being allowed to occupy the wheelchair space until required seems like a very reasonable preposition. But the reality is different. The constant dread of having to potentially fight to get on the train and into the space; the likely snidey comments from other passengers; objections to me inconveniencing them and so on is too much; especially on top of all the other extra hassle disabled people experience trying to use the railway.

LNER’s policy on this is pretty clear. From their Azuma leaflet:

Reiterated on LNER’s website:

Prams and buggies

We’re very happy for prams to be on our trains, just as long as you make sure they’re folded at all times and stored like any other item of luggage.

Be careful not to put prams in wheelchair spaces as this might be needed later in the journey by another customer.

Sign: "Please keep this space clear for wheelchair users"And in the wheelchair spaces themselves.

LNER policy, as told to me repeatedly by a director, is that when not in use by a disabled person these spaces MUST be kept clear, and that LNER staff MUST enforce this. Sadly, however, LNER staff do not enforce it.

There were 593 seats on the train I caught today, and 2 wheelchair spaces. 2 chances for wheelchair users to get on the train. 0.3% of the chance of a non-wheelchair user.

They are wheelchair spaces. If parents need their own spaces, then I support them in getting them. But please do not abuse the spaces specifically and solely designed and placed for wheelchair users.