My NHS Wheelchair Assessment Left Me Feeling Suicidal

Content note: Discussion of mental health, suicidal ideation, ableism, medical professionals.

Estimated reading time: 13 minutes

I wanted to share my experience today when I attended an NHS wheelchair assessment. This becomes particularly relevant in light of the upcoming CFS/ME parliamentary debate. CFS/ME is an invisible, variable condition that many medical professionals still deny, minimise and misunderstand, and today was just another difficult reminder of that fact.

If you would like to skip reading the background information, go right to “The Assessment”.

About Me & ME

First, a little about me and my health. I’m a 25 year old man with CFS/ME; I was originally diagnosed at the age of 19 while I was at university. At the age of 22 my health dramatically worsened and I was left unable to continue my studies or to work a typical job. I currently do a little freelancing as an illustrator because it allows me to set my own hours, work at my own pace, and not have to leave the house.

I have been using a walking stick for about three years now; it helps with my balance, my fatigue, and also serves as a visual indicator of my disability since my disability is an invisible one. I would say I use it about 90% of the time I leave the house, maybe even more than that. CFS/ME is a variable condition which means that some days, some weeks, are better than others, although I have to be very careful not to overdo it on my good days or risk ‘crashing’.

After being under the guidance of my CFS/ME nurse Amanda for three years I have managed to get to a point with pacing where I can leave the house two or three times a week for a few hours at a time. Pacing is a behavioural technique of managing CFS/ME which involves carefully measuring out activity and avoiding over-exertion. At the time I started with the clinic I was almost completely housebound and could leave maybe once every two weeks, so this is a great improvement for me, although I do have to be careful not to undo my hard work as it doesn’t take much to unravel my carefully assembled equilibrium.

An x-y graph titled "How I See Boom and Bust". The x axis is the number of days and the y axis is "Abilities". There's a red line going up high and down low on the Abilities scale as time goes on (Boom and Bust) and a green line going up less and down less. The green line says "Do less on the good days... So that the lows are not so low!"
A picture from another CFS/ME blogger demonstrating how pacing (the green line) is an improvement over the “boom and bust” way of living (the red line). Credit to sallyjustme. This was the clearest and simplest diagram I could find although you’ll find loads of similar ones from more medical CFS/ME websites by googling “Boom and Bust” or “Pacing”.

Currently I live with my partner, who on top of working full-time, does all the cooking and cleaning for us both and doesn’t qualify for carer’s allowance. I live on ESA, under which I’m in the “support” group (this is the group for people who are judged to be unable to do work-related activity); I’ve been turned down for PIP twice but that’s another story.

I also suffer from depression (including suicidal ideation) and anxiety. I am an incredibly ambitious person and I really struggle with the limitations my disability puts on my life, especially at such a young age.

How Using a Wheelchair Helps Me

I’ve always resisted using a wheelchair because of internalised ableism. In my head, society would look down on me less if I didn’t use a chair; the truth is society judges CFS/ME sufferers very harshly regardless of whether we are wheelchair users or not.

In Oct 2018 I finally tried my first wheelchair. My mum was visiting and my brother and I had decided to take her on a trip to the intu Trafford Centre, a huge shopping mall here in Manchester. The trip would involve an hour’s bus ride either way, and the mall itself would no doubt be exhausting. I wanted to go, but knew I couldn’t – unless I tried a wheelchair. So I hired one from the Trafford Centre, which came to £15 for 7 hours or so, and my partner pushed me.

The inside of a bright and busy shopping mall.
The Trafford Centre.

It was great! Don’t get me wrong, I was still tired, but not having to walk meant my energy was better spent on looking around and enjoying myself, and I lasted at least 5 or 6 hours before I really started to flag, which is much more than I would normally last.

After that experience, I hired another chair on another occasion, and it once again helped me last longer before I began to feel seriously fatigued. On several occasions afterwards, there were days I said to my partner, “I’d like to go, but I know I don’t have enough energy… I could probably do it if I had a wheelchair,” but for financial reasons (hiring a chair adds up pretty quickly) and practical reasons (the cheapest hire place was a tram stop away, and meant walking there anyway), I couldn’t.

That was when I realised I needed to own a chair.

Getting My Referral

I talked to my CFS/ME nurse, Amanda, about my experiences with the wheelchairs I’d hired. We even discussed whether a chair might help inside the house; there were plenty of times when I was too tired to get up from the bed, or the sofa, to walk to the kitchen or bathroom. I’ve not tried using a wheelchair indoors yet, but it was something I thought might be beneficial. She agreed that a wheelchair would help me, and wrote up a referral form for me; she also got the CFS/ME Clinic physiotherapist to check it over and approve it. Then it was sent off.

Much to my dismay, Amanda ended up leaving her position as CFS/ME nurse for her own personal reasons quite soon after the referral was sent off. So I had very little idea of what to expect from the assessment when I did attend.

The Ironically Inaccessible Centre

Things were already off to a good start when I received a letter saying I hadn’t attended the assessment; I’d never actually got an appointment letter. I called and had a new one sent through. Apparently this was still marked down as a ‘Did Not Attend’ on my record, even though I explained I’d never got the letter.

Then on the day of the assessment, I tripped down the stairs in a rush to get out of the house to make it in time, and cut my head open on a wall. I had to go to the walk-in clinic to get it looked at, so I rearranged my assessment for the next day.

Maybe it was some kind of omen?

Anyway, third time was the charm. I don’t drive; I don’t know how, and even if I did, I wouldn’t be able to afford a car. Since I live on ESA, I’m not well-off, so if my energy levels allow for it, I’ll avoid taking taxis. My partner was at work. So I took the bus.

The assessment centre was in the most inaccessible place I’ve ever seen, an industrial estate in the middle of nowhere. The bus driver wasn’t entirely sure where I was trying to get to, so had to ask a few people. When I got off the bus stop, I had to walk down a side lane where mud and snow had mingled to make a hazardous mess of the pavement, so I was forced to walk on the road itself and avoid the cars coming in.

A Google Street View of an empty road with two industrial buildings flanking it.
Google Street View of the lane itself, obviously taken on a much sunnier and warmer day.

There was no sign for the assessment centre so I got a little lost before it turned out it was on the far end of the industrial estate. At this point I was already feeling the fatigue.
I walked into a waiting room with two receptionists having their lunch and looking bored. No one else was there. I was then ushered into a separate room with the assessor, an occupational therapist.

The Assessment

It’s actually sort of painful to relive this; it was only earlier today it happened so it’s still raw to me. The humiliation and upset that I suffered is still lingering, but this is why it’s so important to get it out there.

I was immediately told by the assessor that I did not qualify for a wheelchair because I walked into the centre.

I burst into tears. I’m not what I would consider someone who cries easily, but I could not help but sob. I had had no idea that they would judge me based on the way I attended the appointment and it strongly reminded me of how PIP assessors will watch you to see if you came by taxi, bus, or if you walked, because it will go ‘against’ your case. I was already set up to lose and I hadn’t even started.

She claimed that she knew a bit about CFS/ME (admitting that she was not an expert) and that the rules did not cover variable conditions. She pulled out the guidelines and indicated to me where it said, to the best of my memory:

“We provide wheelchairs for those who require them for both outdoor and indoor use. We do not provide them for those who require them for outdoor use only.”

She emphasised the word ‘require’. Apparently, unless I was completely immobile, I did not “require” one. I argued that I did require one, and that the wording was so vague as to be useless, to which she conceded the wording was “woolly” but also said she had to stick to the rules and that it was out of her hands.

(On an additional note, she said she was not allowed to give me a photocopy of these guidelines when I eventually asked if I could dispute them. I can’t help but feel like this makes it doubly difficult, if not impossible, for someone to lodge a successful dispute.)

She also pointed out that CFS/ME is not a degenerative condition- at this point I stopped her, and told her my condition had in fact worsened from when I was originally diagnosed, even if it was not what you’d consider a degenerative condition. She said that even if that was so, I was a “young man” and that it would take years before I became worse enough to be totally immobile and therefore eligible for a wheelchair. My youth has been used time and time again as some kind of way of dismissing my condition, as if young people can’t be sick; this just felt like an extension of that, and made me feel dismissed.

She advised that I “manage my condition” in other ways, such as pacing; I pointed out I’d been pacing for three years under my CFS/ME nurse, the person who’d referred me. She then suggested buying one privately. I pointed out that as I was on ESA, I could not afford one privately. My favourite statement from her comes up next – she suggested that I save £1 a week so that I could buy a wheelchair in a year.

A pile of pound coins.
£1 a week makes… £52 pounds in a year. Wheelchairs cost more than that.

She argued that even with ESA, there were strict guidelines about who qualified for the mobility component. I pointed out ESA has no mobility component and she was talking about PIP. I’m very familiar with the flawed approach PIP has to variable conditions, which is exactly why I’ve been turned down twice as the system cannot account for people who can walk some of the time but not all. The fact that she mixed up PIP and ESA did not reassure me that she knew what she was talking about.

She even attempted to blame my CFS/ME nurse, who has been nothing but an amazing advocate for me for years, saying she “ticked the right boxes” in order to get my referral through and put the responsibility of denying me onto her. She claimed that she knew as soon as I walked in she’d have to have this conversation with me, and that she’d had the same conversation with plenty of other people.

It came up that my partner is my carer but that he also works full-time. She asked what I did when he was away but I needed to visit the bathroom on a bad day, for example; I said, “I wait.” What else did she expect me to say?

Throughout all of this I was crying continuously, and finding it very difficult to remain civil with her. Though I’m not sure how much can be blamed on her and how much on the rules and regulations written by the NHS, I was upset and frustrated and it came out in my telling her, “I’m pretty sure this government is trying to kill disabled people.” She replied that it was about “limited resources” and that “the world is like that”. She acknowledge it was “immoral” but she couldn’t do anything about it. I leave the reader to make their own judgement of this response.

Afterwards

Before I left, I asked for information on how to dispute the whole thing; she provided me with a phone number but I don’t know yet if I have the energy to fight it. I then left sobbing; I wasn’t interested in hearing any more of her thin excuses. I had a cry around the side of the industrial building, where I’m sure a walker and their dog heard me, and then made my slow way back to the bus stop.

I struggle with depression and I really felt so incredibly low in that second. With CFS/ME I feel like I always fit into the grey space between “disabled” and “not disabled”. Too disabled to work, not disabled enough to count. I’ve heard the same message from medical professionals and the DWP, over and over again.

Venn diagram of two circles. One side says "Disabled", the other "Not Disabled", with the overlap reading "CFS/ME".
How it feels.

I’ve had a medical professional ask me, after I told him I didn’t work due to my CFS/ME, why I couldn’t find a job to “interest me” since I was a smart man?

I’ve had the PIP assessor write that I “don’t look tired”.

I’ve had a fellow disabled person point me in the direction of the able-bodied toilets while I was waiting to use the accessible toilet, even though I had my cane with me.

I’ve had countless people ignore me when I stand in front of them on a crowded train/tram, and they’re sitting in a priority seat, and I have my cane out, and I also am wearing a badge saying “please give up your seat for me”.

Every single time, I hear the message that my suffering is not the right type to be supported. That I don’t look sick, so I must be fine. That my illness is made-up, exaggerated, not that bad. That on top of being unlucky to get sick at such a young age, I’m unlucky because no one believes I’m sick at such a young age.

At that point, I felt like I wanted to die.

Conclusion

With some phone support from my partner, and the news that some friends might be able to help with finding a wheelchair, I was able to struggle through and get home. I’m not a stranger to feelings of suicidal ideation so despite feeling lower than low, I did nothing but lie down and recover from my outing.

Now I’m trying to turn my hopelessness into something productive. To get my experience out there and tell everyone just how important it is that CFS/ME needs to be fought for, to be better understood, and to be better supported.

It’s not just about a cure, or treatment. It’s also about acknowledging the condition. It’s about expanding the narrow, arbitrarily strict categories the NHS and DWP have laid down so that people like me can actually get the help we need. Do we really deserve to have not only our friends and family disbelieve us, but also the medical community that claims to be based in science?

Please make sure you contact your MP about the upcoming parliamentary debate to urge them to attend.

I want this to change. I need this to change.

A picture of the Parliament building.
Please contact your MP about the parliamentary debate!

More info on the parliamentary debate:

The debate takes place on the 24th Jan 2019.

CFS/ME organisations to support:

Also…

Comment if you’ve had a similar experience. I know I can’t be alone.

Share if you can.

Thank you!

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12 thoughts on “My NHS Wheelchair Assessment Left Me Feeling Suicidal”

  1. Hi Julian I am so sorry you had to be put through this, you need pip by the sounds of things, i bought my chair privately for the same reasons, and I’d wondered if you’d come across a Facebook group called UK M.E. & chronic illness benefits advice? They have some really helpful admin and good files to help the process and do not ask for money like a lot of benefits advice forums. Thank you for sharing your experience I resonate so much with your description of this horrid condition. I hope you find a way forward soon xx

    Like

    1. Hi there, thanks for your lovely comment.

      I did apply for PIP twice and got turned down (over the course of the last few years). I am readying to apply a third time. Ironically there are a great many things that I would have benefited from having PIP for – like you said, paying for a private wheelchair, but also covering cleaning and carer costs.

      I am a member of that group and have used them in the past. Did not consider that they might be able to help with wheelchair access! I will give them another look.

      Like

  2. I have have had M.E and Fibro for 15 years. I got a wheelchair in 2007 with no problems at all. Then after 5 years I needed a new one as the old one was heavy and knackered. I had to go to that same centre in the middle of knowhere. As it happens I havnt driven for 10 years and hubby took me but as I cant walk more than 15-20m I always use my wheelchair out of the house. But as someone who doesnt use one in the house I only just made it. They’d changed the rules 1 month after my application. The nurse was understanding and said emphasising and pointing me in the right direction- You do go out in this more than 5 times a week!!!! So I nodded. I’m lucky if I get out 5 times in 6 months!!! I was one of the lucky ones. Since the change they’ve treated people appallingly and I feel for you.If you’re going say to the Trafford Centre and can walk from the car you can hire a wheelchair. Alot of places do it. Other than that you have to buy them now. Its so unfair.
    Dont get me started on PIP!! I’ve had 2 assessments now, one in 2016 and one Nov ’18. I was white as a sheet, black bags under my eyes, falling asleep at the end. But I didnt look tired, in pain or anxious!!! I’m doing an MR now and this time I will go to Tribunal.
    If you’re interest theres an APPG disability group looking into PIP and the effects on disabled people. I found them on Twitter and messaged them as they want to hear our horror stories. This is the contact ; George Relph
    Disability Rights UK
    Secretariat to the All-Party Parliamentary Group for Disability .appgsecretariat@disabilityrightsuk.org

    The more of us with hidden disabilities that get in touch the better. Best wishes to you

    Like

    1. Hi Ruth, thanks for your lovely comment.

      Yes luckily quite a fair few places do allow for hiring but neither me nor my partner drive, so it means taking public transport (walking) and getting to the place before I can use the chair!

      I’ll look into the group, thanks.

      Like

  3. So very sad to read this, even though it is a common occurrence within the ME/CFS communities all over the world.
    I too have been put in the support group for ESA and receive both standard components for PIP. I require the assistance of the local authorities to assess and agree my needing a wet room, as I have an Over Bath Shower which is not safe. I have heard that it is impossible to get on as I am not on the higher rate of PIP.

    I like you have varied days, which also means there are OK days. I have a friend who will phone me and sayI sound so well (Hmmmm). I must say however, she does not understand the condition.

    My Dr surgery has no time for me. They can find NOTHING wrong with me, and therefore cannot help me with my aches and pains, falling out hair, or mobility.

    It is very disheartening and depressing. I went from a 38 000,00, to living on social security. I have paid my taxes – yet I am treated like I am an irritation.

    I have a wonderful CFS practitioner. She is incredibly understanding, and whilst the PACE has not worked for me thus far (7months), she is a godsend simply because she genuinely gives a damn.

    I hope this get some recognition soon.

    Like

    1. Hi Tammy, thanks for your lovely comment.

      Sounds like your friend isn’t much of a friend at all…

      I’ve had the same experience with GPs too. They just are totally unhelpful because they don’t have the knowledge to help.

      Like

  4. He’d have to call his deputy or I don’t know the name in UK? Here in Canada it’s a Prime Minister and his deputies. Because the rules and laws are made for healthy people, or amputated people. Or the elderly. It’s outdated, so to change the rules, it takes a political will I think. I too went through something similar, I needed a rotator but it wasn’t paid. And it’s been awful with house help too… So I say put it on your credit card and do your things. You’ll pay indefinitely with the minimum payment, but you’ll have a minimal life quality, and credit card company will be happy too, so everyone is happy. It’s unfair, but that’s the world we live in. You deserve to be happy. So let go of this part, and go forward. And call your deputy when you can, even just to mention these things if the rest is too exhausting. And you can ask them to look the documentary “Unrest” too 💖

    Oh it’s rollator, sorry. It was to for indoor and outdoor. But since I had no motor disease and no amputation, and because it varied, I didn’t have the criterias. I often had to hold at the walls to walk. The fact that it’s variable doesn’t matter, the patient brings it back if he gets better. And, sorry but it can be degenerative. Proven in autopsies… They’re outdated

    Like

    1. Hi, thanks for your lovely comment.

      I didn’t know CFS could be degenerative… I’ll have to look into that. Do you have any sources on that or links that I can read more about that?

      Not sure how it works in the UK but I guess it’s the NHS commissioning board that controls the rules. They did give me a complaints number but not sure I have the energy to chase it up.

      Like

  5. I am a wheelchair assessor. I hate the wording on clinical criteria but I’m in the “lucky” position that my bosses haven’t the faintest clue about what a wheelchair assessment entails and use this to my advantage in situations like this.

    Contact your CCG and challenge the criteria, contact your local authority and ask for a needs assessment. If you have to wait for your partner to come home to be able to use the toilet then to my mind you have a need for additional support and a wheelchair for use indoors.

    ME/CFS, you my mind is simply a condition we don’t understand try, that didn’t change how it impacts you and it’s not very long ago we didn’t understand MS and some/many considered this to be a diagnosis of malingerers.

    I wish I could change your experience but I can’t.

    Like

    1. Hi, thanks for your comment. Pleasantly surprised to hear from a wheelchair assessor.

      It’s sort of a two-pronged process, I feel. Obviously there are rules and regulations handed down by higher ups that need to be adhered to carefully enough that you don’t lose your job, but there is also (I feel) some flexibility in the actual day to day job by the assessor themselves. You seem to be the sort of assessor who uses that limited flexibility to help your patients, which I didn’t feel my assessor was like at all.

      Thank you for your recommendations. The frustrating thing is that the assessor said she was unable to provide me a copy of the criteria so I only have hearsay and memory to go off. Makes it difficult to challenge things, especially in writing.

      Not to mention CFS/ME makes it hard to get the energy to do this sort of extensive challenging, which is why so many of us remain silent. I chose to use my anger and upset to write this blog post; it’s easier to do this than to write a legally-worded letter to the CCG. It may not change my decision but increased awareness is worthwhile in itself.

      I’ll look into it further at any rate.

      Like

    1. Hi, thanks for your comment. I do know about this group and am a member but didn’t think to ask about NHS wheelchairs!

      Like

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