Copy of a letter I am sending to Ataxia UK .How doyou think it might affect you?
Dear Ataxia UK
I have read and digested the new document from the government concerning the PIP and Welfare Reform. It is quite wieldy and I wonder how it is going to affect us with Ataxia. At the moment I am receiving the higher rate Mobility Allowance and the Medium Rate Care.
I have some comments to make regarding the above and would rather get in now while the Government is making its reforms.
I am behind reform of the present system because it obviously leaves itself open to corruption but I am not sure how the future will impact on fellow sufferers with Ataxia. I notice that our organisation was not one of those who made a comment on the drafts.
As you know from your very informative information sheets Cerebella r Ataxia is caused by different things and affects us all in different ways. I currently cannot walk unaided outside or speak without difficulty or write legibly. These changes have only happened recently. The Govt is taking account of changes but my concern is the way it affects me. I have no cognitive symptoms but I know that others with the disease have symptoms like dystonia etc. In the document a lot hinges on assistance required. A lot of us use our intelligence or make choices .We adapt and work our way round things.
For example when making a meal I lurch around the kitchen often not safely and make a meal. In that time I have probably fallen, wrestled with packaging , hit the wrong button on oven or microwave or I could be lazy, safe and not do any of the above. My husband serves up the meal because it is hot . He has to clean spillages, mop up floors and tidy away as it takes a long time. None of this is normal but we adapt. Likewise when eating dinner I wear a bib as I will wear my dinner. Is that an aid? If I were to fill the form in honestly I could make the dinner but not safely. I would get a lecture from Health and Safety .So we can make choices. It would seem to me that the more we try and get round obstacles the less financial help we get. May as well be lazy. Likewise with dressing I could manage but this would involve rolling around the bed for ages. At the moment my husband includes getting me dressed in his daily routine before he goes to work. At the moment I lurch around unsafely until his return when he has to clean up the mess I have left behind. I am a member of Living with Ataxia online and regularly correspond with others with ataxia but there is such a variety , some are in wheelchairs and some have different complications, some of us have co-ordination problems and this effects everything.
With walking we are expected to go from a range of metres. It doesn’t take into account that we might have made sacrifices to get wheelchairs or scooters all costing a lot of money. Life isn’t fair but it’s up to us that we can play a small part in making it fair.
These are my thought on the new PIP and how it relates to Ataxia.
Looking forward to hearing Ataxia UK;s comments on the proposed reforms.
Hi Marie, Yes, i entirely agree with everything you have said. I am very much like you. I try to be as independant as i can,dont like relying on anybody if i can help. As i live on my own,ive managed to comprimise and ask for help if needed,thats not to say its a struggle! though! Sheila.xx
It appears to me Marie that the more determined we are to be independant individuals the more we put ourselves in an unfair vulnerable position regarding PIP entitlement. It must be much easier as you mention to be lazy and except all help from others. Having said that I also feel very lucky when considering others who are genuinely worse off than myself.
if you look on www.dwp.gov.uk it should tell u more
That's what I based the discussion on but thanks anyway. Got the website but still have concerns about us as there is such a lot of variety.Ours is a progressive condition that will get worse not better.Will that be reflected?How ru now?
Wish I was 66 then I wouldn't have to worry about a re-assesment for PIP. Anyone over the age of 65 is exempt.
Not everyone with ataxia has a progressive condition Marie. Cerebellar Ataxia (which I have) may or may not be progressive. My cerebellum has shrunk but this does not necessarily mean that it is progressive. Another MRI scan may provide evidence of this. I have only had one scan so far. My condition may or may not get worse but I do know that my condition is a permanent one. I do believe though that the condition has got worse since my last scan. Who knows what the future holds for us. It is a worry!
Mine is ca too .I have had only one mri and that I had four years ago.My Cerebellum had shrunk also . I did study the website you sent .All I know is i am getting worse but I am really pleased for those who stay the same or can do things through diet.I am concerned about the changes as they seem to be affecting and worrying some people now.They may be for the better>Who knows?Maybe the word progressive is a bit controversial .Hope any future scan is ok -no deterioration.
I was told it wasn't financially viable to do another scan-made me feel a waste of space.
I hope the medical wellfare benefit employers study what ataxia actually is and the impact on individuals it has before making any judgements. Then again if they are determined to reduce the countrys debt deficit they may just act on ignorance. The worry of not knowing how its all going to pan out just puts more pressures on us, which is not good for our wellbeings. It just makes us worse.
Apparently we are to be assessed by health professionals.Do they even know what Ataxia is?Let alone all the different ones....Perhaps I am worrying unnecessarily but as you remind stress is not good for us.
Sorry Marie, I did mean to say medical Professionals instead of employers.
Apparently it costs over £1,000 to do one MRI and depends on what you need and how long it takes to how much it goes up from there. (looked on private healthcare site once years ago).
I haven't thought about PIP yet I'm still working my way through ESA!.. not heard anything from them yet not sure if that's good or bad? .. but this months money went in as incap so maybe I'll hear from them next month?
I have been on DLA since my uni days when deaf students could first get it, would I go through automatically or are they wasting time re-assessing everyone like ESA?
Like many with ataxia ive been following the PIP. After 18 years of 2 yearly reassesments with DLA I was awarded it for life a few years back… To see the proposed changes scares me as i battle to maintain a independant life i very go out alone even when used a wheelchair. My last experience using hired wheelchair company left me fustrated. It was mobility day hire and was having bad spell they said as wore hearing aids i was not allowed a electric scooter. So hung head in shamw at being pushed around by brother. Hows that independance. I worry of having to explain all over again my problems and if they will understand or wipe me off as a person who doesnt need it. To be honest i’m never alone for longer than 10 minutes and if i’m lucky once a day i may get fresh air for half an hour in garden alone sat on doorstep but usually watched from kitchen