Multiple System Atrophy Trust
325 members177 posts

DS1500 & PIP

My dad has MSA and he has really deteriorated in the last 6 months.

He applied for, and was granted PIP (after a mandatory reconsideration) on the lower rates about 18 months ago.

Following a hospital stay he deteriorated and his mobility is extremely limited, requiring supervision and assistance at all times for any kind of movement, requiring a wheelchair and needing all of his personal care attending to.

My mom notified PIP that the doctor had given him a DS1500 form (for those who are terminally ill) as it would help him fast track his claim for the higher rates, but it has now come back that while they have granted him the higher rate care component, because he got worse after his 65th birthday, they will not grant him the higher mobility rate.

This can't be right surely? My parents were hoping for the higher rate mobility so that they could change their car for a motability vehicle, as their current car (a fiat 500) is completely unsuitable for their needs.

He had the condition well before his 65th birthday.....can anyone advise please?

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Hello Spookytookey.

I agree with you that this just doesn't seem fair. Whilst I don't know the answer to your specific question, hopefully someone else will, I have said before that Jackie and I received some great help from Age UK. They helped fill in our forms and wrote a statement supporting Jackie's claim for the mobility component. If you have a local branch I would ask if the have an advisor who would help. One thing we found very useful from them was a 'score sheet' showing how each of the elements was made up.

Hopefully this will help, do let us all know how you get on.

Take care, Ian

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Thank you Yanno. Will try them :-)

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Hello,

We now have an advocacy officer at the MSA Trust who can advise you.

Do get in touch with her- jane.stein@msatrust.org.uk

Kind regards,

Samantha MSAT Nurse Specialist.

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Thank you :-)

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Hi there Spookeytookey

Your doctor sounds approachable which is good. I can't answer your question but think Age Concern could as Ian has already suggested.

What I did think however is that you may well be eligible for CHC funding. You should have a Community Matron who visits your Dad and also a Social Worker? They are both important in applying for that. CHC funding is for someone to help care for your Dad and help take the pressure off your Mum. It is not means tested. Just thought I would add it on in case you hadn't heard of it. You have to fight for that too!! Ask Age Concern about that when you talk to them as your Dad clearly needs extra help.

Marie

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Thank you Marie_14....another one for the list :-)

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Hi, just to add that when my dad obtained his DS 1500 we applied for CHC funding for his considerable care needs and got support from the palliative care doctor. It isn't easy to get but he eventually obtained it with this support and it has meant that most of his care costs have been met. It has eased the financial pressure considerably as they were struggling to pay for care.

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Thank you Hellebelle

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These people are immoral fascists and the Conservative government ought to be ashamed of themselves. It’s all politically driven of course. Write to your MP and complain to him or her. This demonising of the weakest people in society has got to stop. Just keep appealing btw. They are at their most stubborn before it goes to tribunal and then they become more accommodating when they’re faced with a hearing.

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Sadly if you look at the eligibility criteria on gov.uk you will see that it is for those between 16 and 64 so I don't think that you will get any change of mind from them now. Attendance allowance is for those 65 and over and there is NO mobility cover in that. That is rubbish isn't it, you wouldn't want to lose the lower mobility award that he already has though and the higher rate of Care is the same for Attendance and for PIP.

Best wishes

Diane

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