Saturday 20 November 2010

A Look At Pre Cut Wheelchair Provision - Emma's Experience

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.

Thursday 18 November 2010

Peter's Story - Quadriplegic In An Age Of Austerity

Every time I write a story on European countries cutting public spending, I feel a frisson of panic. I can’t help but fear my health, lifestyle and liberty could be a casualty of the “age of austerity”.peter
On assignment covering the Sri Lankan civil war for Reuters four years ago, I broke my neck in a minibus smash. It left me quadriplegic, almost entirely paralysed from the shoulders down and totally dependent on 24 hour care. I was 25.
Nine months later, in a wheelchair, using voice recognition software and supported by government-funded personal assistants, I got back to work in Reuters London headquarters the day after leaving hospital. Now political risk correspondent for Europe, the Middle East and Africa, I write about the interplay of politics and markets. For the past year and a half, much of that has been the drive to cut government spending as Europe rebalances its books.
That hasn’t done my personal mental health any good at all. I even had my doctor tweak my medication to make sure worry didn’t produce a gastric ulcer.
Britain’s new coalition government intends to cut more than many countries, some 25 percent over five years. Some details will emerge in an Oct. 20 spending review, but I may have to wait until the end of the financial year for details on how that will affect my care and that of others.
In many respects, I have already been very lucky. Stringent UK employment law meant it was hard to pension me off just because of my disability. Improvements in voice recognition software meant I could still write at roughly the same speed as before – crucial to continuing work as a newswire journalist.
Most important of all, decades of growth in Britain’s social welfare system meant that – after a substantial struggle – enough state funding was available to look after me in my own home.
That – and a lot of personal grit and determination – opened the door to a relatively full, rewarding and normal life in a way that would be impossible in many countries.
Unfortunately, providing the utterly vital support to me at home and work will cost the British government millions of pounds over the coming decades, providing I live that long. True, I work and pay my taxes but I’m grimly aware I may cost the state far more than I contribute financially.
Travelling to Ireland with carers, hoist and other disability-related paraphernalia, I looked to see what impact some of Europe’s first serious cuts were having. It wasn’t particularly uplifting – disabled people seemed to be some of the worst affected, with discussions over compulsorily institutionalising those costing more than 80,000 euros a year.
In most countries including Britain, deficit reduction produces a fragmented backlash from affected groups. Each effectively wants the axe to fall on someone else.
Inevitably, I’ve become part of that process, learning the lessons from my reporting, trying to position myself as part of the solution and not part of the problem.
That might mean stressing that while I may cost a small fortune to keep independent, I am proving what disabled people can do in work – just as government moves to try to shift hundreds of thousands from expensive incapacity benefit either into the workforce or cheaper simple unemployment payments.
I know it’s not that simple. Just because I can work doesn’t mean someone with chronic fatigue problems can, even though they might appear to be less physically disabled.
But keen to prove my worth – as well as achieve some social good, of course – I’m trying to do what I can do help promote disabled employment.
I’m organising an event for local disabled young people to build aspirations and work skills, connecting them to potential employers and helping them with CV writing and interview skills. I’ve talked to charities, officials and even Disability Minister Maria Miller about what companies can do to help.
This isn’t, I tell myself, simply about my own selfish interests.
But I’m also keenly aware that when those in authority decide my fate, I want them to feel I’ve at least made the effort to be worth the financial cost. And I worry what will happen to those who don’t have my advantages.
(Photo: Reuters correspondent Peter Apps sits at his desk at the Reuters headquarters in Canary Wharf. Reuters/Jonathan Bainbridge)
Originally published at Reuters blogs & reproduced with full permission of the author

Tuesday 16 November 2010

BBC Documentary Wants Disabled Ppl Affected By Cuts

Katie Rice tel. 02087427852 is doing a BBC documentary about how the cuts are affecting disabled people and is looking for people who have already been affected by cuts to  benefits or care funding to take part in a programme so if you know of anyone who has sufferred cuts already and they would be willing to take part in the programme could you or them get in touch with katie please.

Monday 15 November 2010

Clare's Story

I'm a lucky one, I can do some work. It may not continue though and like many, I'm terrified.

I've been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn't have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That's when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn't go away and slept through my final year too.

After university (I just scraped through)I was the world's lousiest holiday rep. I then got a job working nights. I enjoyed the peace but I was doing a 70 hour week and then having a week off. That was the shift pattern. It was a call centre and I wasdoing a non call centre job while phones beeped in my ear. The phone always had priority, I developed stress and from that depression. It recurred once and afterwards I went back to the doctor and said "I was always tired, I was tired before the depression, during the depresion and I'm still tired now, I just assumed everyone was this tired and just coped better, I was wrong, I need help!" I was given a load of blood tests, they all came back egative apart from the inflammation level. The doctor shrugged.

I moved to Scotland where my family live. A wonderful doctor promised to keep on searching until she found something. I moved again not long after she retired. She tried, but nothing. I was diagnosed with CFS. At my new flat I had to walk up a long steep hill to get home and down it to get to work. I'd taken on a part time job working for the council. One day per week contract plus cover as needed. After several breakdowns caused by exhaustion, I didn't feel able to commit to more. In fact on being asked tocommit to another day per week I burst into tears and was sent home crying with exhaustion. I knew there was something with my sleep quality. I never felt that CFS fitted as I got to know people who had it. I begged for a sleep study but got more blood tests. Negative, except for the inflammation rate. Having been 42 it was now 41. Five years later. I hated the doctor who remarked (when asked to look into it) "well at least its going down!" Having just suffered the agonising secondary inflammation of the eye, iritis, I'm not impressed at all.

It was iritis that gave me my second ESA experience. My first was when CAB advised me to apply as my £400 - £700 per month was barely enough to survive on. They told me that I could do some therapeutic work and waht I did fitted. I applied. No one had heard of doing work while claiming ESA but the young girl took my details anyway. Eventually the pack arrived withj a leaflet on the work I could do. It seemed it would have to be heavily medically supervised. I wanted to appear professional and keep my pride. I gave up.

Then Iritis. It effectively blinded me in one eye for a month. I couldn't do the extra hours I relied on, I couldn't even read. I went out one Sunday for the papers and wept when I couldn't read. The next month my pay slip was £293 for the month. I had rent and most of my council tax to pay. I tried again. No joy. I applied, the paperwork came through and then on a call to the benefits office someone asked, "were you paid statutory sick pay?" I told her that I was paid £293 and it barely covered any of my costs. She repeated the question. I was. it turned out. I was therefore not eligible for any help, no matter how desperate my situation. So I'm a statistic. One of those people who apparently had second thoughts once we realised that the test would root out scroungers like us. Recently I've been told I was receiving too much council tax benefit and must pay that back.

So here I am, a linguist who can barely string a sentence together, who can sleep a 12 hour night and manage 3 naps through the day. A woman who regularly falls over or walks through closed glass doors, because while part of my brain sees the danger, the other half carries on regardless. A woman who tried to replace right words with wrong words and sometimes cannot tell the difference between a 6 and 9. Who's eyesight is failing but there's nothing wrong with her eyes. A woman who gets sick after doing 5 day weeks because I have to eat something. And that's before the spending review. How would I cope if I really were sick? *hollow laugh*

Sorry, that turned into a long story. How do you compress a life and a million symptoms and illnesses?