I think most disabled people are worried about the cuts that were announced as a part of the comprehensive spending review and what they will mean. I know I’m one of them. My experiences with my local wheelchair services suggest that it may be worse than I expected, if things like this happen pre-cuts.
In July 2009 I received an appointment to go to my local wheelchair services (Oxfordshire) and be assessed for a new chair. I’d asked for the referral the year before, I believe in the September but I can’t remember. When I went on the waiting list I was sent a letter saying they had long waits and that I could choose not to have an appointment but to talk briefly with someone on the phone and receive a voucher. At that time I was using a chair I had purchased myself and truthfully I was no longer getting on particularly well with it. Whilst I wasn’t adverse to the idea of a voucher I felt strongly that I needed to be assessed by a professional (at that time it had been 8 years since I’d last been assessed) so I chose to wait.
I went into the appointment and the therapist asked me why I had come. As soon as I said it was to see if I needed a new chair she said “yes” with no hesitation. She hadn’t talked to me about my needs or abilities, she just knew looking at me in it.
I’m a full time wheelchair user. I can walk but only a few steps and basically if I’m up, I’m in my wheelchair. Wheelchair services also deal with people who use their chairs for occasional use or outside only. So when she told me they could only prescribe one of two chairs to anyone I was concerned. The feeling was that one of these chairs (Venus by Days) was unsuitable for me. I could see why she had concerns but thought it probably would work for me (the concern was it’s lack of swingaway footplates). However she also mentioned that if she gave me so of the things I needed on that chair her managers would query it. Not because it couldn’t be done but because it was thought it shouldn’t be done. Something to do with that not being a very supportive chair.
So basically I had the choice of one wheelchair or a voucher. This chair is the action 3 by Invacare. And being that it’s the only swing away option they had it pretty much meant that little old ladies who were using there chair for a couple of hours once a week were being prescribed the same thing as me who would be spending 15 hours or more a day in it. I couldn’t see how one wheelchair could be suitable for such varied needs. So I really pushed her and said “are you saying it’s suitable because it is or because you have no other choice?” I did decide to go with that wheelchair and they were able to customise it to be totally suitable for me. I’ve since heard from the maintenance guys that I have at least two things on my chair that aren’t standard.
That isn’t the end of that story – there were a few more niggles a long the way including a long delay in me getting the chair as only one person could order it and they were off. But given the delay in it being ordered was 5 weeks I suspect they forgot. Particularly as no one told me there had been a delay. I only found out because I’d been told it would take six weeks from being ordered so five weeks later called them to see if they had it yet. They didn’t order it until I chased them.
When I received my chair I also received the wrong form of wheelchair cushion. One that in no way was supportive enough (just foam – a low risk cushion and I am not low risk). The therapist told me she couldn’t remember what we’d discussed for cushion. I told her (I’d kept notes) and she said it was the wrong one but I should see how I got on with it. After leaving the hospital we went to the supermarket. I didn’t get all the way round it before I was extremely uncomfortable. I called them the next day to get the correct one. And I waited several weeks.
I’ve had my chair just over a year now. In fact 20th October this year was the one year anniversary of me getting it. That was also the day the details of the Comprehensive Spending Review were announced and all I coud think was that it was lucky I’d got my chair when I did. NHS provision states that unless there is a change in need they routinely replace wheelchairs every five years and no earlier. I also was wondering what the provision would be like in four years time when my chair must be replaced (I’ve heard this is because the chairs can’t be guaranteed beyond five years)
As things stand at the moment wheelchair services provide a maintenance service and you give them a call and they come out. There’s no limit on how many times you can have them out and no charge. I’ve had them out a couple of times for routine maintenance (things working loose) and I’ve had two things break on my chair (one of which required two visits). If I call them early Monday I can expect them on Tuesday or Wednesday but apparently in an emergency they will come that day. They also deal with absolute emergencies over the weekend and until 11pm at night. They make sure I know which day they will come and also if I can expect them morning or afternoon. If I tell them I need it to be after or before a certain time they do their best to do that.
The last time they came to me I said to him that I seemed to be seeing them rather often. I was told it wasn’t a problem. He also told me they have people they have to go to for yearly services and the chair doesn’t get used. They like coming to me because they know it’ll never be a routine service (they check most things when they come meaning I’m very unlikely to get to the one year mark without a visit) and that I love my chair and get a lot of use out of it. After the cuts will I have a limit on how many times they can come out? Or will I have to start contributing to the costs of the upkeep? My wheelchair is my legs, it’s my freedom. I can’t cope physically with out it. And it’s mentally difficult too when it’s broken because I feel trapped.
This week I had to call them again. My wheelchair cushion is made of gel and memory foam and different parts are made of different things. After a year of a heavy cripple sitting on it hours on end it’s developed a split in one of the joins. I was told I’d need to speak to wheelchair services about that so I gave them a call. Then another call. And a third one. Each time I got a voicemail that basically said “if you need repairs call XXX” so I put the phone down. I didn’t want to leave a message because of previous experiences where I didn’t get a call back. The fourth time I called I heard a bit more of the message and discovered that they only answer their phones for two hours in the morning and one hour in the afternoon. None of those times were anywhere near lunchtime so I don’t know how people that work can get hold of them.
I rang the minute it got to the time they start answering. I was told they don’t hold cushions in stock so I must wait at least four weeks. And that’s hoping the supplier has them in stock. I believe the lack of stock is a cost cutting measure. I’m pretty sure my cushion will do for that time but it can’t be as supportive as it was. I’ve just got my fingers crossed that it doesn’t disintergrate any more and I don’t develop pressure sores from using it.
I understand that measures must be made to cut costs. But pressure sores require very intensive treatment, daily treatment from district nurses in a lot of cases. In some cases surgery. So to save money they’re doing something which runs the risk of pushing me into needing treatment that will cost a lot more money.
It doesn’t make sense. And this is pre cuts. I’m scared to think what the provision and service will be like once the cuts are in place.