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Ataxia UK
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Pip

Just applied for pip for my partner. He's still battling away to keep working but I do all the cooking as there's been too many accidents and burns and the kitchen nearly was set alight. I do the majority of household jobs.He struggles when trying to do up buttons etc.Any advice please when completing this form as the questions are not always related to his sca2 condition.

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I would suggest getting help filling out form from citizens advice or similar and always fill in form about worse days not best days ,good luck linda

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Horrible long form.

We were told that we have to fill it in as if the assessor doesn't know the first thing about ataxia (i.e. progressive, no treatment available...) and to make it clear that the symptoms won't improve.

It is horrible to fill in as we all try to be positive, but this is not the place where you can be. I had to do a bit at a time over a week's period as it was too depressing to do all at once.

Your continuing health nurse or the job centre can help you with it if it gets too much!

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I went through this a month is so ago. The assessor said it was very useful that I had a letter detailing all my symptoms from my gp and neurologist. I had to pay for the GPs letter but I think it was worth it Good luck

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Hi. My advice is to get help with completing the form. Try CAB or Age Concern etc. They have advisors who are experienced in wording the answers to the form. Always explain your partners symptoms at their 'worse' moments and how often they occur.

The award will be backdated to when you applied and NOT when you return the form, so dont hurry things unnecessarily. Return the form by the return date given. If you need to send any reports etc, and dont have them available in time, note this on the form and send in ASAP.

BEWARE - there are people around who will complete the forms for you (not necessarily correctly and efficiently) and charge a fee - NON-RETURNABLE.

GOOD LUCK

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They do not take cooking the meal into account, only if he can prepare the meal ready for cooking, if you have not attended hospital or the doctor for your cuts ,or slips and falls it counts against you also. I have just had my refusal for PIP payment with a zero score, I also have emphysema and heart problems, but with the face to face assessment (which was on a good day) they deemed I was a 0 score on every single test they did …...so goodness knows what they expect

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Please put an appeal in straight away, a lot of ataxia suffers get refused 1st time & when filling in your form put everything down what it’s like on your worst day & as if your worse day is like that everyday, go into every single tiny detail of every single one of your illnesses.

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I had DLA, I have had my face to face assessment, It was at 9 am in the morning , an hour after I had taken my medication so I had no tremors and most of my worst problems were under control as I had a fairly good nights sleep the night before, even my emphysema was under control, and my score was 0 on everything. I do intend to appeal, but advice to any ataxian who has had trips and falls , no matter if it is just a scraped knee report it at the time , as trips stumbles and falls not reported can not be proven and do not seem to count. I have age concern coming out to fill in my appeal form for me

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Yes & I have also started taking pictures of any injuries, bruises etc then I can print them off & write on the back date time & what happened in as much detail as possible, ridiculous that we have to go to such lengths😡 good luck on your appeal & keep me/is updated please 😊

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I will do, but to be honest I really do not hold out much hope

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PIP, this is my OWN personal opinion, and it is NOT meant to reflect on those who have it, OK...

my dad got it way back when it was quite easy, 1985. I know people who have gone for it before, and they are often in a worse case scenario than me. I was told (true or false, not sure) but you have to be really in a visible bad way to get it, even if you have a terminal case of cancer, you may not get it if you have a reasonable prognosis, eg, live longer than 6 months. sorry if offends, but this is what I was told.

On the day of either a UC or PIP assessment, a lot depends on who the person is, so whether your descriptions of your day to day existence are of your worst day or a moderately reasonable one, it does not seem to matter, (in my cases anyway)

I am very sceptical of the whole assessment layout, this is due partly on my own assessments (3 now) and what info I have received on here, and other places

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I had to try 4 times to get my DLA and went in front of a panel of 4 before getting it and it was given indefinitely as symptoms would only get worse, I now lose my DLA and have been refused PIP

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U have to answer it as every day is a bad day... these forms are catered for other conditions not our condition... I had to appeal and appeal it finally being awarded.

Every day is different to me they told me that if so bad how was I able to Attend appeal I told them simple I had a ok day and got a cab to take me if I wasn’t having a good day then they wouldn’t have seen me simple...

Also as the condition can get progressively worse over a short or long period of time they cannot say your ok one day so be ok the next... it is hard working doing but they eventually will reward even if the low rate which I am on.... but many people I see with the condition have been given the higher rate..

I politely explained that no expect or doctor on the panel is expert enough as a rate condition and less than 2% in the UK have this condition (type 6 as one I have) so no one can possibly be a expect... as it is rare and each case is different

Hope that helps

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Make sure you detail everything. Does he have to sit down to get dressed because of balance problems, do you have to help him in the bathroom with bathing and toilet, do you have to go with him everywhere because he finds interacting with people difficult and I'm sure you can think of lots of other things that his condition affects. Go here for more advice: benefitsandwork.co.uk/

Good luck.

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Thankyou.The link is so helpful.

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