uk benefits: have any of you uk parkies had... - Cure Parkinson's

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uk benefits

Hamish profile image
10 Replies

have any of you uk parkies had any success with claiming benefits, starting to worry about getting by when i cant work anymore

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Hamish profile image
Hamish
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10 Replies
christinemc profile image
christinemc

Hi Hamish, yes I am on the benefit see-saw at the moment. My GP and my PD Nurse say I shouldn't work, (my employer agreed and finished me early), but the powers that be say after a medical I am fit and so have to claim JSA, and not ESA. The problem with that is they keep giving me problems for not finding a job! At present I have put in an appeal, though I am not very confident of the outcome. The thing is for me I have to wait another 2 years and 9 months until my pension date . Hope you sort things out, Christine

jillannf6 profile image
jillannf6

hi hamish

i had retired when diagnosed wih PSP aged 64 and got DLA after diagnoss - (- was turn ed down b4 dxd )

your neuro and gp should jhelp

do you have a social worker too?

lol JIll

honeycombe3 profile image
honeycombe3

Hamish,

I hate using capitals but NEVER FILL IN A FORM WITHOUT HELP from an outside agency Parkinson;s UK, CAB, Princess Royal Carers Trust etc. Then get your form COUNTERSIGNED by that agency. This is + professional support from your consultant & GP. ALWAYS keep a photocopy of all paperwork. This keeps on working for me. Oh by the way, a letter of thanks to those agencies & to those processing forms is a courtesy which I have found much appreciated.

ElaineMay profile image
ElaineMay

Hi Hamish, your PD support worker should be able to help fill in the forms. Always put details of your worst day. Don't be afraid to tell the truth about how you really feel. If at first you don't succeed then appeal. Drew did not get high mobility the first time but with help from the PD worker (while in Leicestershire) he got high mobility and low care. If you need some extra push try Margo McDonald MSP, who as you probably know, also has PD. The PD worker for our area (Angus) is Helen Byers. Parkinson's UK should be able to tell you the one for your area or your local Parkinson's branch or support group should know as well. Don't leave it until you are 65 if you need mobility allowance! If you need any more help let me know.

Good luck!

Hamish profile image
Hamish

thank you all for the most valuable and useful advice, the help and support is much appreciated :-)

alllowercase profile image
alllowercase

Hi Hamish,

I was made redundant 15 months before diagnosis, and, at age 59 1/2, was forced to claim JSA until my 60th, when I went over to Pension Credit Guarantee.

During the JSA period, I was under the wing of the Disabled Support Officer, so didn't need to go through the hoops like "ordinary" claimants. Every Jobcentre is obliged to have one of these.

She also suggested that I claim DLA, which I did. Naturally, I was refused, so I decided to appeal, and contacted the Community Law Service through the CAB. They gave me a lawyer down in Swansea, near the DLA office. She did not fill out the forms, but advised me what to say. 1 month after I sent in the second form, I was diagnosed with PD, so immediately wrote to them, and, surprise surprise, I got higher rate mobility and middle rate care component. The only difference this time was a name for the same symptoms.

My wife was given carer's allowance, but will not be receiving it now we are divorcing. When they eventually sort it out, I have applied for Severe Disability Premium, which is the same amount of benefit, but will be paid to me so that I can find "a lady that does for me" as they used to say.

Do not give up,

By the way, many of you on this site mention things like Parkinson's Nurse; PD Support Worker; Social Worker - PLEASE could someone tell me where can find these mythical creatures? I live in Tottenham

Good luck

Adrian Williams

alllowercase profile image
alllowercase in reply toalllowercase

Hamish

One thing I forgot to mention in my earlier reply:-

On the DLA form, it asks about mobility and capabilities at home, etc. What many people mis here is that it asks what you can do "without severe pain or discomfort". So, if you can walk 1 mile with pain, do not say so. Tell the truth as it is without your medication. The same question would then probably be answered by 5 or 10 metres.

Adrian

hi Hamish, I have been going through the benefit roller coaster for 3 years, after an accident which complicated all my other problems. I would recommend joining 'benefits at work' on line, they are a mine of information about all benefits, and send a monthly news letter to your inbox, with all the latest info and news from the governing bodies. Also if you can, get help with these forms when needed as they are ambiguous at best in my opinion. I found the cab brilliant. good luck caz.

Helshubby profile image
Helshubby

Hi Hamish , I was "given" Ill Health Retirement last September at the age of 45. I had , up to that point , never claimed benefits before as i had never been unable to work til then. The Parkinsons UK rep has been magnificent - he helped me claim for DLA (got High Mobility and Medium Care) and i also got ESA (Support Group) after having to attend one of those stupid Work Capability Assessments.The main thing to remember is to make sure they know how bad a "bad day" really is , concentrate on the negatives . I know it sounds bad but it's what you need to do to get through to them. Also, as well as DLA and ESA you may be entitled to a Disabled parking badge , free car tax , Motability car , Council Tax Benefit or Housing Benefit (from your local Council). Talk to your rep - and remember , you have worked and paid Tax and National Insurance and are entitled to this assistance - don't be too proud to claim it !!

Blondir profile image
Blondir

I'm pleased I just logged in as I am currently waiting for a pronouncement on DLA from the DWP . hey have asked for a report from my GP and I'm waiting for their judgement. I am lucky that my next door neighbor also has PD and got DLA after an appeal to being turned down 1st time . I am 62 in August and am taking early retirement at the end of July so every penny will help - as Helshubby says ' don't be to proud' - it looks to me like the ones who make least demands on it get the worst deal when they need it.

The information from everyone is very helpful

Thanks to all

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