query about attendance allowance.

[vangelis8]

hi all,just wondered if pmr is classed as a disability and whether anyone is getting attendance allowance.?

[PMRpro Ambassador]

It is classed as a disability for work purposes. It is very difficult to justify attendance allowance as it is also classed as a disorder that can be well managed with medication. I had PMR for 5 years without pred - I don't think I could ever have claimed I needed attendance allowance even then.

I think there have been people on the forum who successfully claimed but usually for other conditions on top of PMR.

[vangelis8 in reply to PMRpro]

Thank you pmr Pro, I'm only asking as someone i know gets it for arthritis, she doesn't have any help at all, and she can do far more than me.

[PMRpro Ambassador in reply to vangelis8]

I'm surprised to be honest - there must be something she's claiming she can't do that counts. You can always try.

[vangelis8 in reply to PMRpro]

Thank you pmr Pro, someone helped her fill the form in from the local council.I will enquire at age UK, but to be honest I don't think I will qualify.

[PMRpro Ambassador in reply to vangelis8]

The right words are essential!

What can't you do?

[vangelis8 in reply to PMRpro]

struggle to get out the bath,have my food shopping delivered,could do with a cleaner but I can't really afford one,My problem at the moment is reducing pred it's been over 2 months going from 8- 7.5mg and counting I'm just concerned my adrenal gla d's are never going to work again.

[PMRpro Ambassador in reply to vangelis8]

I'm not sure those are factors for attendance allowance - it is being unable to dress yourself, got to the toilet without assistance, manage your medications and so on. Do you live alone? My husband was an invalid for the last 2 years of his life, I'm not in the UK but when we applied for the equivalent of attendance allowance the first time we were turned down because he could still dress himself - it took all morning but he could do it, he still managed his medication and could go to the toilet alone. I was there to feed him!

I have to shop, I did all the way through Covid - there is no delivery option here where I live - and haven't had a bath for about 18 years - showers only! I couldn't cope with the cleaning but domestic chores aren't covered here - I have a cleaner for one hour a week which makes all the difference.

If you rent then you may be able to get financial assistance to make adaptations such as grip bars to help get out of the bath or even get a shower - I have a friend in the south of England who had a shower put in because she could only strip wash. If you own your home I don't know whether there is any assistance, you would have to ask.

Whether your adrenal glands will work again or not isn't really something to worry about at present - you won't get off pred as long as the PMR is active and you need what you need. There is no point struggling at too low a dose and being unable to do things.

[vangelis8 in reply to PMRpro]

thanks pmr Pro, as i don't have any trouble with my personal needs i wont qualify.

[Sharitone in reply to vangelis8]

Have a look at this, Vangelis, before you may up your mind definitively.citizensadvice.org.uk/benef...

If you have any letter from eg a GP, consultant, OT that says you are disabled and have difficulty doing specific tasks, that will help a lot.

If you just need grab rails, etc, the first place to enquire would be the GP surgery, who could give you an assessment.

[Sharitone in reply to PMRpro]

Pro, as far as your husband was concerned, you were robbed. I've filled these forms in for people before, and there was not nearly such a high barrier to pass. My mother was given AA recently and she can do all those things herself, and more. Maybe being overseas means you have to have an assessment, and that makes it harder?

[PMRpro Ambassador in reply to Sharitone]

Oh yes - there was an assessment. He was in denial the first time and because he was apparently mentally fine, I was not the one they listened to. The second time they finally rang the week before he died to make an appointment, I told them they were welcome if he was still alive. He had died before the appointment - and they didn't turn up, no idea how they knew, it had been the weekend and a bank holiday! But it was extended and I got the full rate for those months after the second application. I got it a year after the forms were filled in.

[DorsetLady PMRGCAuk volunteer in reply to vangelis8]

As PMRpro says I doubt those will qualify you, the main criteria for any benefit is based on ‘can you care for yourself’ - i.e feed yourself, can you dress yourself, can you wash yourself? The fact it may be difficult unfortunately doesn’t seem to count.

Another thing they place a lot of importance on, is your mental health……I’m not going to ask how yours is, but that seems to be asked on everything nowadays.

I’m still doing a monthly survey on Covid effects etc, and the mental health section is bigger than the physical health part.

[DorsetLady PMRGCAuk volunteer]

I did try when I first had GCA many moons ago more in hope than expectation (thinking sight loss may tip the balance) -but no go.

As PMRpro has said both illnesses can be managed well with meds.

[jinasc]

gov.uk/government/publicati...

Take a look at the form that you would have to fill in.

You can also talk to someone in Age UK. ageuk.org.uk - they have an advice line and they can help you.

[vangelis8 in reply to jinasc]

Thank you Jinasc will contact age uk.

[piglette]

I got attendance allowance fir bith my mother and father, but just with PMR I do not think I should apply. My cleaning lady's father who is 95 has just got turned down for it.

[jinasc in reply to piglette]

I think she should contact Age UK - it sounds that perhaps they did not fill the form in correctly. BTW that happens regularly which is why AGE UK helps.

[piglette in reply to jinasc]

I did offer to fill it in for them, but they said they wanted to do it themselves!!

[jinasc in reply to piglette]

What a pity that they refused your offer. Please do not let it stop you offering help in the future to anyone who you think might need it. A helping hand is always good in book.

[piglette in reply to jinasc]

It was my cleaning lady’s sister who felt she could do everything herself! I am a dab hand on forms as I went to a course in how to fill in a lottery application once which was incredibly useful and has got lottery grants, fundraising, blue cards, attendance allowance etc etc for people. It is dreadful that there are techniques to getting money.

[jinasc in reply to piglette]

Snap - we got £10,000 from the Regional Lottery Fund, which enabled us to make progress when we were hard up as PMR&GCA uk North East Support Group were run by 6 people and our own money.

We gained charitable status, made a DVD, produced a Booklet, Quarterly Magazine, a Steroid Record Book, which enabled us to keep a better record etc. Hold a meeting for 600 people which included patients, Rheumatologists, GP's and other medics came to because of the Speakers we were able to get to that meeting making them more aware of both PMR & GCA. and the complexity.

We sent the Rheumy's our magazine each quarter which reminded them we existed and they then told their patients about our existence. Oops this is a long post on history.

The Cardinal, Dasgupta and 600 people including PMRpro.

[piglette in reply to jinasc]

That is a fantastic story, I know what hard work it is planning and organising something like that. Let alone fundraising for it.

[jinasc in reply to piglette]

I missed the best bit - launch was 10 May 2008 and I met PMRpro that day..............she has suffered ever since😉😉

[PMRpro Ambassador in reply to piglette]

So it is all her fault you are saddled with me

[jinasc in reply to PMRpro]

Doubt 🤔🤔piglette would agree to that statement.

[piglette in reply to jinasc]

😂😂😂

[jinasc in reply to piglette]

I did have 5 other people to help and then the Tea Ladies came and ran the reception, well I blackmailed them - we go back a long long way..........one a friend for 73 years this summer.

[piglette in reply to jinasc]

That is so nice to hear.

[vangelis8]

tthankst o everyone who replied to my query.

[cool4bob]

vangelis8 AA can be claimed if because of your disability you need help with personal care: You are entitled to the higher rate if you need attention with bodily functions several times at short intervals right through the day and you also need attention with bodily functions more than once a night or once for a prolonged period.Then the majority of the questions where you need to go into details are just you repeating yourself over and over but that’s how you score points.

[vangelis8 in reply to cool4bob]

thankscool4bob for your information, as i don't need any personal help i wont qualify.

[jinasc in reply to vangelis8]

The impression that 'Personal Help' ( washing, dressing etc) is not the only criteria.

A lady who could no longer do her own shopping, gardening, driving etc applied.

That lady was able to wash, dress and cook, dust and do some light house work. Applied and received the smaller allowance. This enabled her to take taxis to GP, Hospital, Shopping etc. Employ someone to help with the cleaning and pay for other outside assistance as and when needed. Age UK and the Citizens Advice Bureau both helped.

[vangelis8 in reply to jinasc]

thanks for that Jinasc , will inquire at age UK

[Daisyroo]

I am also 72 and get the higher rate of AA. I have 12 conditions including systemic inflammatory RA, PMR and GCA and medically induced insulin dependent diabetes. A gentleman came from Age UK at the request of my gp nurse and filled in all the forms. I was 65. (Now it is the job of Age Concern.). The main thing is I can only walk a few steps and am in constant Gasp making pain. Even sitting and lying down hurst. My husband is 81 and can do very little himself. Making a simple meal is difficult. Sometimes impossible. I paid for a stair lift and rising chair myself but the rehab officer came from the county council and gave me various aids for lavatory and Zimmer frame etc. I have eight hours help a week, but I have to add to the AA allowance for this, which I happily do. I hope this helps. Ps I long for the days when I only had PMR.

[Abbeynan82]

I recently received Attendance Allowance. The GP had suggested I get on the Care Manager’s books, just register. Then later after my husband had died, I called again and asked for an assessment, which was done over the phone. He suggested I apply. I filled out the form truthfully, mentioning pain in the morning, asthma, partial paralysis from previous illness. I have AA at the lower level, and the evident purpose is to keep me out of either hospital or a Council care home. I had maxed out on hired help, and it is helpful for getting things done that I cannot do myself anymore. Care assistants are hard to find, so that may yet be a problem. I can dress, but I find balance in a shower an issue. I had used up my last wodge of money getting a shower with seat and grab bars. I could use it for taxis as I feel a prisoner in this house. Shoes and socks, falls, and cooking are also issues they are interested in. Age! There are advantages to being registered with Social Services, as when you need something you can tell them. I am using cleaners to help with things I cannot do, and pay with AA. They won’t shower me though!