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So. Today is voting day for the Referendum which means I have had to get up. I don’t do getting up every day but today is too important not to so I am now sitting in my wheelchair and I’m not entirely happy about it.

For those of you that don’t know me or my situation, let me explain.

I should start by saying that, for me, the wheelchair scenario is nothing new. I have been a full-time wheelchair user for nearly twenty years now so you’d think I should be used to it by now, and in most ways, I guess I am. But, over the past two years, things have changed dramatically. My impairment has deteriorated markedly and, because of this, I now spend most of my time in a hospital type bed in my living room. I get up a mere three or four times in a month to go out but bed is where you will normally find me. I would love to be able to get up more often, most of the time if I’m honest, but, thanks to my rotten, horrible, massively uncomfortable NHS wheelchair, I can’t.

Before things deteriorated I used to be pretty active. Not a bouncey, run-around, exercisey sort of active lifestyle of course, my MS didn’t let me do that, but a busy, non stop, very fulfilling, sort of active lifestyle nonetheless. What you would expect for a woman in their late forties, early fifties to be honest. I worked full time, went out with my friends a lot, traipsed off into town on shopping trips when I felt like it, went to the pictures and the theatre with my family occasionally, had fun, had a life. And to enable this life to happen, I had a pretty decent wheelchair which I obtained through a scheme called Access to Work. This is a Government funded scheme which allows disabled people to obtain the help and equipment they need to get on a level playing field with their non-disabled colleagues. My wheelchair didn’t do everything of course but it did all the things I needed it to do to allow me be comfortable and busy at the same time. I could recline the back, raise and lower my feet at the touch of a button, tilt the whole chair so I could relax when I wanted to and it had enough battery power to allow me to go where I wanted, when I wanted without the risk of grinding to an undignified halt. When I became too sick to work any more I had owned it for around five years and I had also owned a similar chair for about five years before that so I was used to it and what it did. There was one other thing I loved about it – it was easy to drive and so was so maneuverable that I could get on and off buses, or into cabs if I wanted to, without a problem. I was used to it, I loved it and I was happy and comfortable with the freedom it gave me. It was an integral part of me. But it was old and clunky and squeaky and bits were falling off it. It wa coming to the end of it’s active life and it needed to be replaced. That would have been fine if I had still been in work, I could have just got another chair through Access to Work, but I’d had to give up work when I got sicker so I was no longer eligible and I couldn’t afford to buy one privately. Decent wheelchairs are far too expensive. I now have to rely on the good old NHS for my equipment.

I fully understand that the NHS is publicly funded and so has to show it is value for money and not frittering public money away but does that have to mean that, whilst the equipment it provides for disabled people is functional, it is not what that disabled person really needs. It may have to be as inexpensive as possible, but that does not necessarily mean it is entirely fit for purpose. The cheapest option is not always the best, the most efficient or the most cost effective. Having a wheelchair that gets me around but which causes extreme discomfort and pain is not a great idea really. It means that I am more likely to need to see my GP o the District Nurse more often, that I need to have home care workers and support staff attend in my home more often and that I am reliant on other people for almost everything I want. And that has a cost too. With this, cheaper chair I am not getting to go out and about  as much as I once did. I’m not not able to volunteer at my local disability organisation any more, I’m not able to use local facilities like the library or neighbourhood shops as much as I once did. My quality of life has diminished. I can’t go to the doctor on my own or pick up prescriptions from the chemist if I need to, they have to come to me. I’m not able to even think about getting a part-time job to boost my meagre income and pay my taxes. I have become a drain on the system, I am unable to contribute.

Why can’t things be looked at in the round and not separately through their individual elements? Why can’t cause and effect be taken into account? Why is money and cost always the primary concern when looking at the needs of disabled people rather than what might be the most beneficial and cater for that person’s needs the best? Surely spending a little bit more now, if that would mean spending a lot less later would be more sensible. Maybe one day I will be able to have a wheelchair which will take into account all my needs rather than just giving me the one that is the least expensive. I want something that will allow me to be the real me again not just a shadow of the me I used to be because it’s cheaper. We only have one chance at life so give me, and all the other disabled people in the country having to use the cheapest option available, the tools we need to take that chance rather than always looking for a way to pennypinch and cut corners. The cheapest option is not always the best option and short-term pain will not always lead to long term gain. We all should have the right to live and not just exist and I would like to have the chance to have that right too.

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I used to have a great wheelchair. I used to have a wheelchair that was perfect for me.I used to have a wheelchair where I could adjust the angle of the back whenever I needed to and have it at whatever angle was comfortable.I used to have a wheelchair where I could adjust the position of my feet to wherever I needed them to be. I used to have a wonderful wheelchair that I found easy to drive, that I could manoeuvre into the wheelchair space on a bus without a problem, that went at a decent speed, that was my lifeline.

Now I don’t.

My old wheelchair was one that I was able to buy privately through something called the Access to Work scheme because it allowed me to be able to go out and earn my own living. Now that my medical condition has worsened, and I am not able to work any longer, I am forced to rely on the National Health Service for my mobility equipment.

And I am not happy.

The chair I have now is perfectly serviceable, don’t get me wrong, I’m not entirely ungrateful for it, after all, if I didn’t have it I would not be able to leave my home and meet up with my friends, but, to cut a long story short, it’s just not right. From being someone who got and used my chair from early morning until late at night without a problem I have become someone who prefers to stay in bed and only gets up once or twice a week for just a few hours. And it’s all because of the chair.

The problem I have with the thing is that it doesn’t service all my needs adequately. I end up in pain and discomfort and, if I’m brutally honest, I would really prefer not to have to use it more than is absolutely necessary. If sit in it for longer than than a couple of hours my back starts to seize up and I begin longing for the comfort of my bed. I need to be able to do what I used to be able to do and adjust my position whenever I need to. Then my back doesn’t hurt at all. I never used to get backache when I had my old chair, I used to be able to get up early, work for an entire day, go out with friends in the evening, come home and go to bed in the small hours and barely a twinge. I wouldn’t like to try that now. Even if I leave getting up until lunchtime, the muscle spasms around my spine become practically unbearable within two or three hours and I have to go home and rest. No more West End Shows and late nights for me.

Then there are the problems I now have with my legs. Nasty, swollen, puffy ankles and throbbing, aching shins and calves, after no longer than half a day. Pain and discomfort most of the time. With my old chair, all I had to do was push a button and my leg position would alter to make things far more comfortable for me, but not any more. Not with my fantastic new NHS chariot. Leg adjustment, just like positional changes for my back, are now no more than a fond memory from the past.

What I really want, what I really need, is something like my old chair but, unless I come into some unexpected funding, that is just not going to happen any time soon. I know exactly what I would like to have but I am equally aware that, if things don’t change, I am stuck with what I have now for the foreseeable future. I know I should just be grateful and shut up but it’s difficult. Having the right wheelchair for all of my needs would be a dream come true but for now, that’s exactly what it must remain, a dream. Until things change disabled people must go on putting up with the cheapest possible alternative at all times and, until things change, manufacturers will not see a reason to produce anything better. The NHS cannot afford it and, until they can, disabled people will just have to go on coping with the cheapest alternative, no matter how much we need something else