Doug Paulley's blog

I went on the new charter service yesterday. I had an excellent time.

Finding out whether I would be able to travel was very difficult because information on its accessibility (to wheelchair users or other disabled people) wasn’t published anywhere (at the time). It’s still far from complete now.

The service is actually run by Locomotive Services TOC Ltd. Their Accessible Travel Policy isn’t entirely accurate about this train either. So I thought I’d help out.

We can accept foldable wheelchairs and have a ramp so that passengers can board. We also have one dedicated wheelchair space aboard per train which is availble for both standard and electric wheelchairs. However as the stations we serve are run by Northern Railway we can’t accept mobility scooters aboard the train or at stations. For disabled access please email in advance before booking your ticket.

The current website accessibility text

That’s not the full story.

Carriage D, with the wheelchair space (at the south end of the train yesterday) was once a standard first class coach without a wheelchair space. They made a wheelchair space in the cartage by removing a chair and table.

That means the carriage doorway has a very narrow opening. My wheelchair is about 68cm wide. I had to remove one rear wheel and handrim to fit through the doorway. I reckon the doorway is less than 60cm wide. Given that the UK standard for railway carriage wheelchair access is to accept a 70cm width wheelchair, this is a significant restriction – most wheelchairs won’t fit through.

There’s no disabled toilet on board. The toilet is very inaccessible and impossible to even attempt to enter in a wheelchair. Whilst the journey is supposed to last 1hr 10mins ish, the train can be delayed, as it was yesterday, thus taking 1hr 30mins with no access to the loo. Skipton and Appleby stations have good disabled toilets available and open – I don’t know about Appleby.

There’s no table available in the wheelchair space. So I had to juggle the gin!

The coaches were recently retired from standard usage on the mainline, on Anglian railways, and had been recently refitted. So the lighting is very good, the announcements were loud and clear (RASTI levels good), the upkeep is excellent, the suspension butter smooth, and in general the whole thing is in good nick.

The stations are managed by Northern, so the charter company told me to book assistance with Northern passenger assistance. But the trains, as charter trains, aren’t in the national rail timetable, and Northern’s assisted travel people were utterly flummoxed by this. They couldn’t get their head round it, their systems didn’t allow them to book assistance on a train that didn’t appear to exist, and in the end they gave up.

Happily, the charter staff e.g. the guard were excellent, very friendly, efficient and knowledgeable. The Northern staff at Skipton and Appleby were very helpful and competent (they always are, in my experience.) So there’s no problem. I would recommend turning up a little early to arrange assistance if you don’t book in advance.

So this service clearly isn’t fully accessible to wheelchair users; many will find it impossible to enter. And the “official” access information about it is limited and inaccurate. But if you can access it, it’s an excellent trip.

(A steam train I saw whilst at Appleby)

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.

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.

The campaigners are concerned that, if they contract the virus, they may be deemed less likely to benefit from life-saving treatment than non-disabled people – meaning that they may not be offered life-sustaining treatment but will instead receive palliative care 2/5

— Rook Irwin Sweeney (@ris_law) April 14, 2020

The campaigners are concerned that there is no explanation about how patients will be prioritised and that value judgements will be made about disabled people’s quality of life which will lead them to be placed at the back of the queue for treatment 4/5

— Rook Irwin Sweeney (@ris_law) April 14, 2020

The SoS and NHS England have been asked to respond by the end of Thursday 16 April 2020 to avoid the need for an application for judicial review – we’ll provide further updates here 5/5

— Rook Irwin Sweeney (@ris_law) April 14, 2020

Passing out sometimes looks peaceful, but never feels it.

“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.