Newly diagnosed

Hello

I am posting on behalf of my brother who after many tests was diagnosed as having Cerebral Ataxia. He has all the symptoms balance, vision and speech.

He has been trying to get ESA but they deemed him fit for work because at that time 18 months ago he could step onto a step unaided. He couldn't manage it really and it was difficult for him to do. Anyways he has put in an appeal which next week is another health assessment. Has anyone else had to go through this process as clearly he isn't capeable of working. He has just £60 to live on in a council house.

I'd be grateful of any advice and any benefits he can apply for to help.

Sharon

20 Replies

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  • Hi Sharon

    Thank you for your post. Unfortunately there are plenty of others who have been in a similar position to your brother. I am sure some will post their stories on here.

    I am not on ESA so have little experience of this. However my advice to your brother would be to answer questions at the assessment (and indeed on any forms) of how things are on his worst day. This can be very difficult emotionally but as he has a fluctuating condition this is the best way of getting across how bad things can get.

    I think it essential that someone goes with him to the assessment.

    Regarding other benefits, has your brother applied for Personal Independence Payment (PIP)?

    Best wishes

    Harriet

  • Hello Harriet

    Thank you for your prompt response. I will be going with him to his assessment so hope to put it across better. My brother hasn't heard of PIP until last week. How would you go about claiming it!

    Regards

    Sharon

  • Hi Sharon

    I thought you would find the information in this link helpful-

    gov.uk/pip/how-to-claim

    Best wishes

    Harriet

  • Thank you I will do that for him

    Sharon

  • I just think it depends on where you live, After 25 years working my doctor wrote a letter saying what was wrong with me to the benefit dept. I get housing, PIP, and I applied for a bus pass but was turned down because I hadn't enough points(|I could feed myself) when I told the bus driver he said there was people with passes that jumped on the bus who had one. I started Pilates 2 years ago to strengthen my back by Alan Menzes, I now just use a walker outside, take 1 painkillers before I get up, go out everyday so I talk and socialize. Tell your brother when \I saw my daughter having chemo Ataxia is nothing................

  • Hello

    Yes he had the same problem not enough points so was turned down. We hope to appeal though.

    It's good that you are able to manage your symptoms well done.?

  • Hi

    Do you have a welfare rights team that can help ? we access our through our council. They are very good at appeals and know the system inside out, please try and take someone like this with you.

    Ataxia is sometimes very hard for others to see, the constant 'balance thing' going off in your head is not always visiable. I find it helpful to have a pen and paper handy and as I carry on with my day, I jot down all the things my husband finds difficult, then when I come to write his appeal or whatever it maybe, I go to great lengths to explain why he can't do them and how trying to do them, makes him feel. So, from trying to get up in the morning and switching on the light( which can be a task) to going to bed at night, get it all down in writing, along with the things he used to do, but now take an age or just aren't bothered with.

    I've always been successful, sometimes at first try, sometimes at appeal, welfare rights know exactly which problem hit the right category to get the awarded points.

    Ataxia UK helpline may also give you advice,

    GOOD LUCK

  • Hello

    Thanks for your advice. Welfare rights will attend the tribunal. However they won't attend this one as it's a Health Assessment first. I am going to do that now write down as much as can about his falls, balance and speech etc

    Kind Regards

  • Hi Sharon

    It's best to call the DWP about getting the forms to apply for PIP asap, a successful claim is then be back dated from when you enquired. Welfare Rights will help you apply for this too. If successful with pip and get awarded 8 points then a blue badge can be applied for and granted automatically, in our area this also gives you a right to a gold card with which you can get free bus travel.

    If there is any doubt or tasks that cannot be done repetitively, then ask your brother to tell the health assessors he cannot do it, it's better to say a clear no rather than say maybe or, I can sometimes, the assessor can only go on what they are told, ie a maybe becomes a yes, whereas a no means no!

  • Hello

    Ok thanks so much this has been very helpful. I will do all this. Not contacted the care helpline yet as am not officially his carer yet but will look into it. Many thanks Sharon

  • Hi Sharon I am so sorry to hear this. Has he had a social work assessment or carers assessment if someone helps him do stuff? That is the key to getting esa. You need to contact the adult social care team social work team at your local council and ask them to come and do an assessment at home for youur brother and you or whoever is his main carer. Also get them to assign you someone who can help you navigate the process we had to appeal pip and he did it all for us. We also contacted carers trust helpline they can also do the assessment for you and offer you support to help your brother. He should be entitled to get PIP and ESA but will probably need you to support him through the system and carers trust can help you to navigate the beuracrcy too. All the best x

  • Hello

    Thanks so much for this information. Social services, Occupational Therapy have been round to assess him. He is seeing someone next week for a PIP assessment so fingers crossed. Then it's his assessment to see if he's fit for work. This is the one that beggars belief when he clearly isn't fit but they judge him on being fit just because he can lift a pen or make a phone call etc. All we can do is hope and hope these other professions social care, consultant, doctors etc can help.

    Many thanks

    Sharon

  • My partner had this problem we appealed and we got it we went through citizen advice they acted on our behalf they were brill do you claim pip ? Housing benefit ? Etc involve your gp as well and also get your ot to help and asses the property but also my partner now has msa very progressive you need to keep shouting for help !

  • Thanks got social services, OT involved plus the consultant letter on his condition so hope this all goes his way. He's been assed for PIP next week.

    Sharon

  • Make sure you ask for an assessment at home for pip. Also explain that you helped him complete forms or whoever did otherwise they assume he did. Explain how long it takes him to write compared to regular Joe. Always answer every question as if it's the worst day its ever been. Don't exaggerate but the assessor will assume if it's a good day its always that way. My husband can pick up a pen but he's exhausted afterwards. If you answer yes to writing explain effect after activity engaged. Have as many medical letters to hand as you can. Ask for copy of Social care assessment as these are key pieces of evidence. If you are doing all you have been doing you can be considered a carer even if not claiming any support for it yet. Still give carers trust a ring they will be a great help I am sure. all the best x

  • That's brilliant thanks so much. Social services made contact with DWP to come for a home assessment so haven't a letter from social but will ring tomorrow to see if can have one.

    Sharon

  • Hi Sharon,

    I am new to the forum and this is my first post. I too suffer from Ataxia which causes bad balance and coordination problems, constant dizziness and therefore stops me from doing normal day to day tasks, unless I go very slowly and make sure I have something to hold onto in case I may fall (which I have a few times). I don't go out anymore and cannot travel on public transport as I cannot negotiate stepping up and down very well and my walking makes me look like I'm drunk ! (and I don't drink !.....maybe I should start....no-one would know the difference...LOL). I am 51, so should still be fairly active, but am unable to do as much as I used to....however, still positive !

    With regard to benefits, I am on ESA and all I can advise is that the appeal process is pursued and followed as the DWP request. As you may be aware the DWP tightened up requirements for all benefits and appear to make it as difficult as possible to grant a claim (they have to watch the pennies !!!). I am very aware of this, as I am currently in the queue for a tribunal regarding my claim for Personal Independance Payments (PIP for short).

    PIP is awarded for the inability to achieve basic everyday tasks, as opposed to your actual illness and is definitely worth your brother looking into (if you haven't already). It's the same sort of procedure as claiming ESA and can provide a needed boost to income. Some get it quickly, others like myself experience more (unnecessary) difficulty.

    I used to get PIP which was then stopped when they tightened up regulations. I had to re-apply which was rejected. I then had to request a 'Mandatory Reconsideration', which again was rejected. The next step is to go to appeal at a tribunal, where it is decided by a judge as to the outcome (which is the stage I am at - although the time aspect is down to the system and it is the usual waiting game.....fingers crossed). The DWP have medical evidence from my neurologist, DR, Scan information, Hospital visit records and whatever supporting information I could get hold of.

    Please don't be put off by my experience, a PIP claim can often be easy and well worth it and a must for anyone with daily needs or mobility problems.....more information online...try gov.uk/pip

    Hope this may help in some way and let your brother know he is not alone with Ataxia, as you will be aware from this site.

    Good Luck....Stuart.

  • Thank you so much Stuart. The red tape is so so frustrating isn't it. It beggars belief that these people expect a person who appears to be drunk can hold down a job. If I turn up for work drunk it wouldn't be allowed would it as it wouldn't be safe.

    Thank you for your advice

    Sharon

  • Hi

    I had a renewal PIP assessment in March and up to last week I had not heard from them so I rang to find out why (17 weeks) I hadn't been given a decision. A few days later I got my letter which has not changed since I was awarded it 3 years ago My mobility is worse than it was but was only awarded 4 points for that because I can manage to walk aided between 50 and 200 meters. I was awarded 8 points for daily living which has stayed the same. Awarded til 2020 unless things change. I have got a face to face ESA assessment in two weeks which I am not looking forward to at all. I think they will put me on JSA. Fingers crossed things go my way.

  • Hello I am sorry to here that. It's such a difficult condition isn't it for you and everyone else who has Ataxia. What is even worse is the the governments fixation of getting people off the welfare system that truly need the financial help and support they deserve with sympathy and understanding of health conditions such as yours. I am stunned you still got low points. Fear for my brothers welfare and state of mind now. It's just so unfair for you all.

    Sharon

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