I discovered the other day the ultimate lie, the NHS doesn’t care for the sick, they care for themselves. We are all told from childhood on, that no matter what is wrong with you, the NHS will care for us. If we are really ill, they cure us, if we’re disabled, they will supply us with the equipment that we need to make our lives possible. It may not always be pleasant to the eye, but they do supply it, no matter what. Well, it might not be all a lie, but trust me, a large part of it is. I’ve know for years that they can’t always cure us, bu the next step, surely they can’t get that one wrong.
Last Thursday, Adam took the day off work to accompany me to the hospital, my long awaited appointment to go to Westmark to get an electric wheelchair, had arrived. This isn’t the first time that I have asked for an electric chair, I have, in fact, asked before and at that time, I was turned down. The first time, was years ago, I was still working and I was finding the fatigue from using my manual chair in the office, was just too much for me. I was the Operations Manager for a company who sold distance learning to the public. In the world of that time, that meant a call center, and trust me if you have never been in one, they are always huge and always not designed for those who can’t walk. I was turned down on the basis that because there was more than just one step, from street level to our flat, we couldn’t get into our home to charge it. I explained that the chair would be kept at my work, where there was a lift, and as I had 24/7 access, I could pick it up whenever needed outside. In reality, I actually spent more time in a week at the office, than I spent anywhere else, but they didn’t see it as my home, so it was a no.
My life now is clearly totally different. This is now my 10th year of being housebound and I have now been using my chair all the time in the house for nearly a year. Those who have been reading my blog for a while, will know that my chair has been causing me huge problems. My grip has slowly been diminishing and the pain in my arms has been off the scale. That along with the fatigue has meant that Adam, has been pushing me around whenever he has been at home. My chair was actually causing me almost as many problems, as it has cured. Despite the fact I had been turned down before, the District nurse agreed that I should apply again as there was no comparison between now and my first application. So we did, and we waited for the appointment.
When it arrived, Adam phoned them as they wanted me to go to Westmark, rather than them coming here. It made no sense to us as without seeing our home, how could they know what chair would be suitable. We live in a Victorian flat and there are so many tight twists I have to negotiate, that without being here, getting the right chair would be hard. He told them about my condition and how difficult it is for me to go anywhere and what the impact of going out, has on me. They said we still had to go to them, so they can see what sort of controls I would find easiest to use. It kind of made sense, so we gave in and booked an ambulance to take us to what used to be called the Southern General Hospital. I say used to, as they just built a huge new hospital on the grounds and renamed the whole place, the Queen Elizabeth.
When the ambulance arrived, the attendants asked why I was going to Westmark, when we told them, they instantly told us, that because we lived in a flat, we wouldn’t get an electric chair. No one ever did. We still wanted to try. I knew that the attendants had been there loads of times, with loads of different people, with different conditions, but we had to at least try. There was a kind of heavy silence all the way there and even when they fetched a chair for me and handed me over to Adam, they said nothing, not even “Good luck”.
After about a half hours wait, we were eventually called through. The woman who saw us was really nice but within minutes, we heard that word, “No”. Both Adam and I wanted a true answer to why and what was going on that the NHS was leaving me unable to get around my home, something that in time, would mean I would need a full-time carer, just to be able to live, feed myself, go to the loo, all the things we all do throughout a day. The ultimate truth is as follows. Because an electric wheelchair weighs 14 stone or more, it can’t be lifted up all the stairs to our flat by one person, in particular, the person who was sat there talking to us. It would break all the health and safety rules. Even when we offered to have a group of people here to carry the chair up to our flat the answer was still no. The rules are set in concrete, a member of NHS staff must on their own be able to deliver the chair to the patient’s home, so that they can go through how to use it and so on. If they can’t, then no one else can either. The patient’s needs and health are of no importance what so ever.
We then asked why we had had to come to the hospital to be told this. After all, it would only take the person sending out appointments, to look at the address to know that we might not live in suitable accommodation. In Scotland, we use a numbering system that makes it totally clear it’s a flat. Ours is 2/2, translating as “second floor right”. Glasgow if filled with Victorian Tenement blocks, so the odds are there won’t be a lift. Clearly, to those who don’t know the area, we might have, but a simple phone call would have answered that question. On top of that, when Adam spoke to them, he had told them about the stairs. Still no one managed to use their brains, and simply say at that point there was no point in us making the journey, as the answer would be “No”. Therefore, saving both our time and freeing up more time for those who are suitable. The whole system stinks, including the rather smug ambulance attendants who took us home again.
So the NHS has left me stranded, we had to come up with a solution on our own. As soon as we were back here, both of us launched onto the web, to see if we could find an answer. I already knew that electric wheelchairs are expensive, but we had to look. What we found initially confirmed that. They seem to start at about £1400, and rise from there up to £26000, which put all of them out of our range. The hospital had suggested that we turned to the MS Society for help, but that just didn’t sit well with me, surely we could find a suitable chair, at a price we could pay. Our searching brought up one of the huge chemist chains in the UK who sell both new and second-hand chairs at a reasonable price. We found a chair that fitted perfectly, it was second hand, but it had a years warranty, and once we took off the 40% VAT, something the disabled don’t have to pay on aids, it came in at just £606. It was a stretch, but the chair looked great and we could just afford it, I clicked the buy button and it was mine.
This, though, isn’t the end of the story. I will tell you the rest tomorrow.
Please read my blog from 2 years ago today – 26/11/2014 – Naive
One of the things that goes hand in hand with living with most chronic illnesses is they are totally unpredictable, one day or even hour can be totally different from the last. This one annoying fact I think is responsible for our lose of friends early on in our illness, before all the other reasons they disappear
Cant wait for the rest!
I am on tenterhooks!
I am glad you found something and enjoy reading about your life adventures. Looking forward to the continuation.
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This sounds like it is not equality….I believe on the NHS a indoor wheelchair is for indoors.Your intended use is this, does this breach human rights just because as many you live in the home you and Adam like,as I imagine many Glaswegians do.
So sorry to read this post, you have stayed independant and has it helped? I wonder who makes the laws sometimes.
My thoughts on this subject leave me shocked, saddened and astounded at cruelty.
Gentle hugs x x
I wouldn’t be surprised if it didn’t breach my human rights, but they are probably banking on the fact that I like many with a chronic illness who is housebound, don’t have the energy to fight this all the way through the courts. Nor can we afford the costs of the lawyers. 😦
I hear you. It’s like that line about Nursing Homes being God’s waiting rooms. Government agencies are not about benevolence and spending taxpayers money, but making us jump through hoops and making it so hard you eventually give up. Sorry, no good news today. Might be time for a move? Hating that concept myself. Cheers,
There is no way that I could face the stress of moving any more. I think there are somethings that we just have to give up, eventually 🙂
I am reading your story backwards and after wanting to thump the delivery guy, I now want to thump the NHS. Their treatment, as you have clearly shown, is cruel on so many levels. I’m glad you’ve spoken out and written about it on your blog. I’ve written about my latest encounter with a drongo with a hope that increasing awareness will ultimately make a difference. Pen pushers make these rules but we need to live with the consequences.
Today, a friend put me onto a school student conducting a survey about attitudes towards disability for a school assignment. She asked what I thought a disability was, which was quite an interesting question and I’ve never really put that into words before. I ended up saying something along the lines that everyone has strengths and weaknesses but having a disability is like coming up against an invisible brick wall..a bit like the glass ceiling. She also asked me about how I thought people felt about a disability and whether attitudes were positive or negative. I actually decided they were positive overall and that people do want to help, be compassionate and understanding and there are just a few bad eggs out there. I hope I’m right.
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I believe that every person alive has a disability of some sort. It all comes down to degrees. Get to know someone well enough and you will eventually find theirs. Much of it comes down to society. In fact, in some cultures, what we might see as a disability, is seen as a gift. Belief and attitude is what defines our abilities just as they do our disabilities. Physical disability can be spotted by anyone, but mental disability is harder, unfortunately the assumption by most, is those who have a physical issue, must also have a mental one. Hence the fact we are treated like idiots, spoken to as though we are deaf or can’t possibly understand what is being said to us. Our disability all to often is what other see, not what is really wrong with us.
The more those who are confronted by people with a disability, the more they see it as normal and unfortunately, the more normal it becomes, the less they feel the need to help. If they happen to be one of those bad eggs, well wow betide anyone who asks for help, make them a pen pusher and we a doomed. Luckily, this combination is rare, but they are out there. 😦
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Thanks so much for your thoughts. I can see you’ve thought long and hard about what it means to be disabled.
I am in quite a different boat because I look quite “normal”…at least at the moment when my auto-immune disease is in remission. I only use my walking stick in crowds and on the train and have been able to take some beginner adult dance classes, which actually improved my mobility. This has been a huge step forward for me.
However, I had a nasty fall walking on the footpath recently and really struggle in crowds. I can get stuck quite quickly and there’s this sudden sense of panic. I didn’t expect this and needing help. That’s okay if Geoff is with me but obviously not so good when he’s not.
This morning I found out that my local council is seeking contributions from people living with disability for an accessability focus so I’ve emailed them and thrown my hat in the ring. This should be a very good way to make some improvements.
I hope you’re having a good day.
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I’ve put a link through to this post and hope it attracts more readers. People power vs NHS.
Thank you (((Hugs)))
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Big hugs back to you too!
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I just want to say God bless you sweetie..
Thank you, and you 🙂