pmr and pip: Advice needed on pmr and pip Can you... - PMRGCAuk

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pmr and pip

Blackorblue profile image
50 Replies

Advice needed on pmr and pip

Can you claim if its controlled by steroids

If so how do you sucessfully fill in the form

ps. Im 65

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Blackorblue profile image
Blackorblue
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50 Replies
piglette profile image
piglette

I know some people have got PIP, although people do not normally get it for just PMR. You can always try for it though. It can only be applied for up to pension start age which is currently 66. It is done on a points system. benefitsandwork.co.uk/perso...

Blackorblue profile image
Blackorblue in reply to piglette

Thankyou. I did look on the gov site and i can get lower rate but no idea how . Was just wondering. I prob wont even bother

piglette profile image
piglette in reply to Blackorblue

At 66 you can apply for Attendance Allowance which seems to be easier to get but I may be wrong!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to piglette

I didn’t get it when I applied with GCA and partially sighted -so not that easy!

Not that I really expected to, but if you don’t ask… 🤦🏻‍♀️

Doraflora profile image
Doraflora in reply to DorsetLady

My sister has just battled with them again to get the higher rate of AA for her husband who has many disabilities. On the form, his nurse said to use the two main key words, which are ‘supervision’ and ‘attendance’.

She won! And they backdated it to last September! Win win…

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Doraflora

Have sent a Chat

Doraflora profile image
Doraflora in reply to DorsetLady

Thank you! I have replied

Blackorblue profile image
Blackorblue in reply to piglette

Ok thankyou. I wont be 66 until nov but wirth a try. I still work now

piglette profile image
piglette in reply to Blackorblue

It can take up to 6 months to get your PIP, so I did not know if you felt it was wirth it. Of course they may back date it. I have just checked whether I could claim and I don’t think I would get enough points!!

Blackorblue profile image
Blackorblue in reply to piglette

I checked and got 4 points but to be honest i prob wont bother with all the hassle

piglette profile image
piglette in reply to Blackorblue

Try for Attendance Allowance in November.

Blackorblue profile image
Blackorblue in reply to piglette

Thankyou

Maryis80 profile image
Maryis80 in reply to piglette

Don't try to fill in the AA form yourself. Contact AgeUKwho have volunteers who can help you. When we applied for my husband who has Alzheimer's, it took the volunteer over an hour but worth it and back dated six months.

Doraflora profile image
Doraflora in reply to Maryis80

The same happened with my brother-in-law. My sister did the form herself, over a few days, just to make sure she got it right. And it paid off!

But I appreciate not everyone is au fait with form filling and it’s best to get professional help if so.

Bedwell profile image
Bedwell in reply to Doraflora

Yes certainly that is the case.my daughter filled in the form for attendance allowance and it was refused. I spoke to Age Uk to appeal.. 2 of my friends in a very similar situation to me have got it and I don’t understand. Got a letter this morning saying appeal had been rejected! You have to know how to fill in the form I guess.

Bedwell profile image
Bedwell in reply to Bedwell

Just to add.. I now have to wait for a Mandatory Reconsideration notice!!!!before I can appeal again!

Doraflora profile image
Doraflora in reply to Bedwell

Oh no! But were those two ‘key words’ I mentioned used on your form, ie supervision and attention?

That’s what did it for my b-in-l. Plus they backdated the payments to last year!

Bedwell profile image
Bedwell in reply to Doraflora

I don’t remember seeing the form . My daughter filled it in. But I’ve spoken to someone at Age UK and she said to contact her when I get this Mandatory consideration and she’ll see what she can do.

Bedwell profile image
Bedwell in reply to Doraflora

how amazing to have it backdated! Neither of my friends have Alzheimer’s or anything like that. They’re certainly no worse at anything than I am . Not fair!!!! They do their own shopping / cooking.. etc we all have difficulty getting out of the bath!!!

Doraflora profile image
Doraflora in reply to Bedwell

Well my b-in-law also has type 1 diabetes, spinal /mobility problems, plus other things - on top of the Alzheimer’s - so he’s well earned his AA

Bedwell profile image
Bedwell in reply to Doraflora

Certainly has! But I see myself in relation to my mates.. who were successful !!! Maybe eventually!

piglette profile image
piglette in reply to piglette

I did a course run by the Lottery on how to fill in their forms. It was one of the best things I have ever done and has really paid back. The only trouble is I am now the official form filler for everyone! There really is a technique.

Doraflora profile image
Doraflora in reply to piglette

We all know who to come to then, piglette🤣

piglette profile image
piglette in reply to Doraflora

I will have to start charging! I even managed a million quid off the lottery, probably easier than the blue badge I got for someone though!!

Doraflora profile image
Doraflora in reply to piglette

Wow! Good for you being a lottery winner….

PMRpro profile image
PMRproAmbassador in reply to Doraflora

Not directly hers - for charity!!!!

PMRpro profile image
PMRproAmbassador in reply to piglette

That wasn't a PERSONAL million though was it?

piglette profile image
piglette in reply to PMRpro

Unfortunately not! All to help charity.

PMRpro profile image
PMRproAmbassador in reply to piglette

Thought so!

Doraflora profile image
Doraflora in reply to piglette

But what a generous thing to do, Piglette. Well done you.

I’m now contemplating how I’d help my “children” and 3 grandchildren with all that dosh. They would be sooo happy.

piglette profile image
piglette in reply to Doraflora

I did not win it myself, I filled in a load of forms for a particular project and we were given a million quid to do up a building as a museum. I also got a grant for an outdoor basketball pitch. It was worth going on their form filling course.

Doraflora profile image
Doraflora in reply to piglette

Well, it’s still an amazing achievement. How rewarding for all your hard work. x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Blackorblue

See this -

gov.uk/pip/how-to-claim

piglette profile image
piglette in reply to DorsetLady

That is the one I tried.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Recent post on similar -plenty of info there -

healthunlocked.com/pmrgcauk...

Blackorblue profile image
Blackorblue in reply to DorsetLady

Thankyou will check it out

Curious101 profile image
Curious101

I'm sorry to say this, but I would be surprised if you will be granted PIP for PMR, unless the fatigue or brain fog means you need a lot of help with things. It isn't based on how unwell you are but on what assistance you need in doing things.

If you do need lots of help, you will need to be able to prove it.

I used to volunteer for Citizens Advice (for 5 years). If you think you'd be eligible then I'd encourage you to get in touch with them for help filling in the form - it used to be 40 pages or more I think from memory. I suggest this because it's our natural instinct to say "oh it's not so bad", when the DWP need you to explain exactly how difficult things are. and Citizens Advice have experience.

Loopy65 profile image
Loopy65

Having just gone through the application and appeal process for PIP (I was awarded it for 10 years!) I would say the getting PIP ‘just’ for PMR would be highly unlikely. Even more so if most symptoms are controlled by steroids.

I have a shopping list of conditions and none of them, on their own, would be enough to qualify for PIP.

Sorry to the bearer of bad news

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Loopy65

Better to be realistic at the outset….

Zebedee44 profile image
Zebedee44

I have fought every step of the way to qualify for and retain PIP, having to ask for a mandatory reconsideration at every stage of review. Quite honestly the mental anguish was horrific, coming on top of the mental health issues I presented with even before PMR was added into the mix. The system seems to be designed to make you feel like a fraud, it’s very distressing and quite frankly I wouldn’t attempt it again now. That said the money is paid in addition to my state pension and makes my life a bit more comfortable. Good luck if you decide to apply, it isn’t plain sailing .

Pixix profile image
Pixix

I commmented on a post yesterday, PIP is for disabled folk, & PMR is a controlled disease (or should be, we all know it’s difficult to control). It’s not (hopefully) a lifetime illness. PIP is a benefit to help those who can’t dress themselves, feed themselves, socialise easily, & go to the toilet unaided (& other items of daily life, including walking a short distance only). If you feel you fit the bill, go ahead. I can’t think of many I’ve read about on this forum, who have only PMR or GCA who would receive an award of that nature. Also, the award would normally be for the short(ish) term of it lasting. The reason that many (like Zebedee44 above) said the system is designed to make you feel like a fraud is because so many people try to get the benefit when they don’t ‘fit the bill’ & it’s not the correct benefit for them. If people are trying to get it because they cannot work, I believe there are other benefits. If people are trying to get it just to have more money in life for the period they suffer with PMR and/or GCA only, then I wouldn’t think it’s suitable. Is being registered disabled really something that goes hand in hand with PMR/GCA??

toniaell profile image
toniaell

Hi I'm just going through this process at the minute! I've managed to get my work pension. I had a report done by Prof Rod Hughes which I think helped enormously. I have had very bad side effects from steroids but also have arthritis and now poss furbromyalgia. I have a call with the pip people next Tuesday. Not holding out to much hope but I'm only 57 so thought it was worth a try. I've never claimed benefits in my life so feel I should.at least try and see what happens. I'm very grateful I'm not working as some days I struggle to get up before 9! I think if your still working it may be more difficult ?

S4ndy profile image
S4ndy

The PIP process is not to be embarked upon lightly. The form alone is huge and repetitive. I got PIP and have retained it but not without a struggle, lots of evidence and assessments. It had a massive effect on my mental health.

I would recommend anyone applying to get help from either AgeUK or the CAB. I didn't realise how difficult it was so didn't have their help at the time.

There's an excellent website called Benefits and Work where you can access lots of guides. It helped me no end with my PIP, ESA and more recently Universal Credit claims.

I have several things wrong with me so not just PMR although that was the final straw. I get the lower rate for care and mobility as I have quite a lot of issues. I am not sure I would have got it if I only had PMR though.

Appledore6 profile image
Appledore6

There is a subscription site called Benefits and Work. It costs about £20 a year. It is very user friendly for all benefits you may be entitled to. There is help about understanding how your condition affects you. When you read through the information relevant to yourself its a real eye opener. Please apply if you think that you need financial help as we all know stress is the last thing people with P.M.R. need. Good Luck

tangocharlie profile image
tangocharlie

The PIP application is very complicated. Whether you get it doesn't depend on what illness you have but how well or not you can do the things they list, everything from walk to manage money. You need experienced help to know what to write. Age UK offer a good service, so does Citizens advice but there is a very long wait for them. From now on keep a detailed diary of EVERYTHING YOU DO during the day and night. eg not just got out of bed, but got out of bed with great difficulty, I needed help and it was very painful. I had a shower but it took a long time and I needed aids like a handrail and stool to sit on. I have got full PIP now but it took years of reviews and appeals. Also a huge percent are turned down at first but go on to win on appeal. If you get it before pension age you keep it after that rather than going on to Attendance Allowance which pays less so get in there quick.

tangocharlie profile image
tangocharlie

Do bother. You are entitlted to apply. We didn't ask for this illness and it is life-impacting

PMR_sufferer1 profile image
PMR_sufferer1

Let's be honest if you get anything it's a bonus so keep trying. I would not advocate telling little lies but without Pred PMR in most cases is a clear disability. Most PIP assesments are done online not face to face.

Good luck don't give up.

Pedro955 profile image
Pedro955

I claimed for PIP a week before my retirement. I have PMR, arthritis and back problems. After a 2 hour telephone interview I was awarded a ten year motability and living allowance. Also immediate acceptance for blue badge on application

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pedro955

Yes, but you are in a slightly different situation than author this post, and have more than one problem.

Your arthritis and probably back issue is degenerative [albeit that some arthritis be improved by surgery], PMR in itself is not, and is likely to go into remission.

Researchfreak profile image
Researchfreak

any sickness or disability benefit claim is based on what you are unable to do or require assistance to complete the task. How long it takes and any effect it has when trying to complete. . Any decent welfare rights worker would be able to advise if you qualify and if so make a successful claim.

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