With the Conservative party announcing their ideas about welfare reform in the past couple of days once again it feels like open season for those of us in receipt of such benefits. Whilst Peter Hain insists Labour will cut the number of those claiming incapacity benefits by 20, 000 a year, and apologises for his administrative failings which would, if I, or any other benefit claimant were to make those kind of 'failings' on our forms, undoubtedly result in an investigation for fraud, David Cameron has announced plans to cut the numbers of those claiming incapacity benefit by 200, 000.
Now, you can call me a realist
Now, I happen to have been fortunate enough to have been finally diagnosed and have seen a specialist in bendy people in Leeds, but that doesn't mean I don't need to see a consultant rheumatologist closer to home on a regular basis. So first of all, Mr Brown, whilst you happen to be on the subject of NHS funding, I'd like to be able to see my consultant again please. Once just wasn't enough. A nurse specialist, however nice, isn't the same, and at my last appointment where, because I have a complex condition she needed to seek advice from the consultant, she was sorry to tell me that although I should be seen again in six months, the government's lack of understanding of chronic conditions means they've cut funding to the point it'll be a minimum of 12 months. Those of us with chronic conditions are I assume the same people you're all so desperate to kick off incapacity benefit, so unless your plan is to cut the benefits bill by ensuring none of us can provide the name of a doctor treating us at hospital in supporting evidence to our claims, then I'd suggest that one of the most important things for getting people into, and keeping them in work is putting much needed funding into those areas of the NHS really most affected. The dull, day to day routine stuff. As opposed to whatever you came up with as a headline grabber whilst eating your breakfast.
Social care. That old joke chestnut. Direct payments are such a good idea, really they are, but not if the councils ration care. Then increase charges. Social workers removing vital support packages from individuals or families in their efforts to meet budgets ultimately impacts on the welfare bill. At £48.65 a week Carer's allowance is a national shame, particularly as carers are estimated save the economy £87 billion a year , but it's much cheaper to pay that, and perhaps a bit of income support than it is to fund support packages properly. It's just a little cheap to want the same people to go back to work. Those of us with disabilities who live alone find it just as hard to manage without any help, so not providing the most basic of support, in the form of personal care, food preparation, washing, dressing, cleaning, by getting social workers to insist they can't see the 'need' for it, whilst suggesting a return to work seems a bit steep. No matter how much you all insist these cuts reforms won't apply to anyone with a genuine inability to work, living on the constant knife edge of fear that being a genuine benefit claimant brings, you'll excuse me if I simply don't believe you.
Equipment. It would be nice, if you'd like us all to go out to work, if you could see your way to providing suitable equipment. Claiming that people are too disabled to use equipment such as bath lifts may seem the height of illogicality, but you'll have to trust me on this one, it's a common excuse used by social services occupational therapists when refusing people the vital equipment they need. Health and Safety you see. Might fall, injure yourself and then sue the council who provided said equipment. Thus conveniently saving themselves a great deal of money. Especially when rationing care packages at the same time. Turning the basics of life into an even bigger battle than they need to be puts unnecessary barriers in the way of work, and that's before we start to look at wheelchairs. Not exactly luxury items these things now are they?
YTS, that license to print money New Deal. I'd love to know how much cash has been poured down the drain on this one. I'm a graduate. I'm also disabled. I would love to do a second degree if it enabled me to support myself on a part time basis from home, though I haven't been able to find any way to fund that so far. Benefits advisors telling me that I shouldn't bother because being genuinely disabled means the state will keep me on benefits for the rest of my life really doesn't count as good careers advice as far as I'm concerned. Neither does New Deal for disabled people, which as far as I can make out exists only to attempt to get disabled people to sign up with the many, many, many, competing jobs brokers. That's how the get their funding you see. Which, if they did something worthwhile would be great, but in my experience all they offer try to pressure one into is the lowest level NVQ's, in useless subjects, and at the last interview I attended wanted me to be a full time support worker. That's right, for people with learning difficulties. A physically very demanding job. Why? Well, they had plenty of those jobs to fill, and no understanding of how to go about supporting the needs of genuinely disabled people. Some fed up media studies graduate who, as he said couldn't find anything better to do after university, didn't know where to start with someone aware enough of how job brokers worked to refuse to sign up with them, but overall it is an effective way of massaging the employment figures. Even if it's not an effective way of getting disabled people into the workplace.
Access to work. Once again, nice idea, shame about the reality. Anyone sensing a pattern here? I won't bang on about access to work, partly because it upsets me too much, their delays both in assessment and provision of equipment being a significant factor in my having lost the job I fought so hard to get, and instead I shall refer you to Mary's more recent experiences with them.
Tax credits, council tax benefit, housing benefit, Disability Living Allowance, free prescriptions, the list goes on. Its impossible, even with the laughably named 'better off' calculation to get an accurate financial picture of whether someone will actually be better off in work or not. Particularly when, despite it being non means tested, in reality it's all too common that entering the workplace is used as an excuse to remove an individuals DLA.
There are more, but I shan't go on, I'm depressing myself if not everyone else. What I will say is this. Mr Brown, and Mr Cameron, the leaders of our main political parties, both men who coincidentally are fathers of disabled children. Shame on you for using that when it suits you, and choosing to ignore the true reality of most disabled people's lives when it doesn't.
Have you ever thought much about how others perceive you? I think it's quite a difficult thing to do, Fruitrock and I were talking about it over Christmas, and now she's done this amazing (and incredibly flattering) caricature of me I thought I'd share it with you, at least temporarily. Now you have some idea of how I look, does it match the mental image you had, and what kind of image do you think others carry around of you?
Yesterday I had one of those sleepy blur days, so tired and sore after going to the hospital that even getting washed or dressed was more effort than I could make. I didn't even bother to get out of my pj's when I returned the two calls I'd missed from Roland by forgetting to take my phone off silent and he let me know he was going to pop in for a cuppa. I suppose then it shouldn't have come as a surprise when, with his true coppers knock, he nearly banged the door down late this morning. I'd forgotten to take my phone off silent again, and like yesterday had missed a couple of calls from him, but unlike yesterday I'd not realised. When I hadn't called him back or sent a text, although he said he thought I'd probably left my phone on silent again, he also said I'd looked pretty unwell yesterday and he didn't want to take any chances. Bless. As I'm blogging and am a bit more honest here, if it wasn't for him, I wouldn't have made it out of the house today either.
Over a cup of tea we decided to go out to costco and road test my new wheelchair. I was too tired to blog about it in the run up to Christmas, but suffice to say the NHS rules I've posted about before mean that as my upper body is too unstable to even consider the kind of chair you self propel and as I have some, albeit mobility I'm not entitled to a power chair, I have ended up with what is officially called a transit chair. In reality that means my friends get to push me around, and if yesterday's experience is anything to go by, I hang on as best I can whilst alternating between screaming with laughter and fearing for my face. I really should have strapped myself in. I knew Roland with his love for speed would not be able to resist seeing if the chair could do wheelies with me in it. It can. You'll all be pleased to know. And we only had a few Lou and Andy moments freaking people out when I got out of the chair and walked.
In all seriousness I'm liking the chair. Even if it's too heavy for me to lift, or move in any way. Even if it has to live in the boot of my car, where it doesn't quite fit properly, making life a bit difficult for anything else that might need to go in there. How could I not love something that's sparkly purple?! It was wonderful to be able to go out for the day and not to have to come home and go to bed after a couple of hours though. Trying to 'walk' on hips that dislocate produces a kind of pain and exhaustion that I don't really talk about in the 'real world'. Once again being honest, it's less to do with not wanting to complain as the nurse specialist thought it was, and more to do with not wanting to acknowledge it to myself. If I start doing that anywhere but here then the enormity of it would probably overwhelm me and as not coping isn't an option that isn't a choice I'm going to make. That said, it was wonderful to just relax and let Roland do the hard work for a few hours, which as he said he is more than happy to do. It was even better, and more unusual to be able to go out for something to eat afterwards, I felt almost normal for a few hours. A grand day out!
I missed posting this before Christmas, this post was featured in the Britblog round up. Hello and thanks to anyone coming in from there.
I had an appointment this afternoon, with the rheumatology nurse specialist. I was a bit confused when I got the letter as, like I'd said when I was at freak clinic, I was fairly sure I'd met my rheumatologist once (not the extra special bendy people rheumatologist in Leeds) but I knew I'd never met a rheumatology nurse specialist. That I would have remembered. Still, I've long since decided it makes for an easier life not to try to argue with NHS letters, so this afternoon I went along to my local NHS hospital.
First I spent the best part of half an hour desperately circling the car park looking for a space along with every other car unable to find a space. The disabled spaces were particularly difficult to find, many I noticed being occupied by extremely expensive, top of the range new model cars without blue badges. Eventually I was able to park after just waiting by the disabled bays for around 10 minutes until someone left. This though is the same hospital that blocked off all bar one of its disabled bays outside the physio unit for several months last year.
I went to visit one of my neighbours before going to my appointment. She had an operation this morning, was full of praise for how wonderful the staff were. They did seem to be, lots and lots, of friendly, nice nurses standing around. My neighbour was in an 8 bedded bay. There were 5 empty beds. As the wind whistled outside, the windows rattled and I could smell the faintest hint of cigarettes from the mothers to be smoking below.
When I arrived in outpatients I found it was very busy. Nothing like the well staffed, half empty surgical ward my neighbour was on. This was packed out. Running late. I was reassured by the receptionist it wouldn't take too long as I was seeing the nurse specialist. Not too long turned out to be around 30 minutes. It wasn't. I remember orthopaedic clinics where not too long was 3 hours.
The nurse specialist was honest. Management of chronic conditions isn't a priority for the government. We're supposed to be looked after by our GP's. Diagnosed. Treated. Discharged. No matter how unstable the condition. Just hope you're one of those lucky enough to have a good GP. For those of us who need long term looking after this is it. No bright shiny wards with patientline and named nurses for me. Just an overworked nurse specialist, kind, caring, good at her job and unable to do it properly. To use this government's NHS I have to have something that can be fixed, put in one of their beloved boxes, ticked off and filed away. Like most of us who's need is most, I don't.
