Hi Pdiddy - sorry you don't always get round to reading every post everyone posts. Are you having trouble applying for PIP then?
Yes my wife did
Been told I need to apply even though on DLA.
When you do apply get a support worker from Parkinson uk to help you, its very important the forms are filled in correctly. Type PIP in the search above top rhs for lots of info.
Good Luck.. Billy
hi i used the help on this site and was awarded it first time. Its a good help as it allows me to pay for support with travel, help with tasks i can't do anymore and weekly physical therapy. Without it I would be isolated at home everyday. I am happy to help from my experience if that would help - message me if you want to.
Caution: If awarded a Benefit, don't build your life on it. The bxxxers take it away from you for no reason at all, whenever they feel like it.
I know. Been on Incap, DLA and what have you for the last 20 years. Had all benefits withdrawn for no good reason three times now, and have won at Tribunal every time. Its no joy ride, let me tell you!
Got asked recently if I wanted to switch to PIP, I said no thank you! I'm 64 this year, one more and then my Pension kicks in. Phew!
I applied for PIP last year and only got 4 points. I applied by myself and didn't really think about the assistance P.Org offered, which was foolish of me!
I re-applied again this year and had a lot of help from P.Org filling out the form. Thanks to P.Org I felt we had a good chance. We failed dismally, receiving ZERO points!
The response letter was not very nice, it made me feel worthless, It felt like I was trying to rip someone off. I have been diagnosed for nearly 5 years now
I cannot quote the letter here as we are asking for a reconsideration at the moment.
I got PIP lower rate mobility first go, before I developed PD. I’ve now got higher rate mobility, and standard rate daily living. Again, that was the first claim for deterioration. I think it’s slightly different in Scotland , because the government mindset isn’t that claimants are all a bunch of worthless scroungers.
I’ve said this before, but PIP isn’t meant to be an income replacement, it’s to pay for the additional costs that disabled people face in life. As it happens, I don’t need the money, I need the doors that open - like Motabilty, and the ease of getting a Blue Badge, and not paying VAT on home modifications. I don’t drive, so that Motabilty will pay for a top of the line road going mobility scooter.
Hi juju I was wondering if you could help me on this subject. Just got the dreaded brown envelope. Tia
I received PIP the first time around, was awarded it for 4 years, now it is time for a re-assessment which is what I am awaiting the result of. Even though my PD is worse I am not holding out for an easy response!
I was awarded pip first time lower rate daily living, and 4' points mobility asked for reconsideration didn't get it so now waiting on tribunal date, which l am absolutely dreading, challenging question of planning and following the route of a journey unaided ,I can't manage to go anywhere on my own anymore so anxious and legs freeze and go panicky and feel faint so definitely could not do it , been waiting since may as I've definitely progressed since the time I applied in January, I filled forms in, well husband did with the help of turn 2 you , think that's what it's called , maditory letter came while we were away,so only left few days so not long enough for anyone to help ,so don't hold out much hope , keep wanting to cancel it , but struggle to get in and out of the car now ,and have to time meds for going out, as awful if they wear off while I'm out., Asked citizens advice for help but had 6 months backlog.
I'm really sorry that you have had such a choppy journey so far in your PIP application process. Have you been in touch with your local adviser or with the helpline for support with this? We can help you, so please contact your local adviser (you can find one here if you still haven't got one) or call us on 0808 800 0303 so we can help you.
Mara (Moderation Team)
Yes have local advisor, really nice and helpful, but because we had started the process on our own at the time, and we were on a time limit he couldn't put us in touch with someone to come with us as they didn't have the paperwork, but helped with what to write in letter, didn't think would be waiting this long tho ,I'm seeing the specialist in January so hopefully she can do a support letter for me, just feel lost in all this paperwork and Parkinson's is such a complex condition every day is different can feel really good one day and comotose the next an anywhere in between, started to keep a diary once a month it helps to write down bit at a time how I feel , frustrations etc , thanks for listening
Just another cautionary note: MOTABILITY cars and other equipment can, and often are withdrawn without more than a few days notice, in the event of any benefit cancellation by the DoE. I had this happen whilst living in the depths of nowhere, three miles from nearest shop and village. Twenty four hour notice, then a tow truck came. Driver of the truck was disgusted when he saw what the job entailed, and couldn't believe anyone could be left in such a predicament.
Never, ever, trust the Benefits System. It is not there to help you, even though it once used to be. Now its all about how many people can be forced off benefits, either to become homeless, a suicide statistic, or employed for 24 hours, before being sacked and sent back to Benefits System Square One.
I know I sound cynical. But I've been dependent on Benefits for over 20 years now, first with a nasty spinal disease, and now with Parkinson's. Oh, and a modest heart attack somewhere along the line, I think about ten years ago now? So I write from experience. My ex-wife was a Benefits Advisor at the time, which helped. But she had to quit, the pressure from above to cancel benefits was enough to send a strong, upbeat and cheery person into a suicidal, depressed pit. In effect, she was ordered to act illegally (misinform "The clients", lose paperwork ~ seriously! ~, delay forms, lose forms, anything to stop a claim no matter how justified the claim, nor how needy the applicant). It took five years for her to climb out of a suicidal pit.
So please, everyone - anyone - do NOT trust the Benefits you have, HMG can cancel them before you've even had your early morning cuppa.
Thanks for this MB420, I'm really sorry to hear of such difficult experiences. Although I'm certainly not defending the system, it's noteworthy that around 2/3 of PIP appeals are overturned in favour of the claimant - so it is worth challenging decisions through Reconsiderations and appeals, even though it can be tough.
The Government also changed the rules around Motability cars and PIP appeals, so now you can keep them for longer. It's still not much, but it's a start: https://www.parkinsons.org.uk/news/small-step-forward-motability
hi - i am so sorry i only just seen your message. i hope i am not too late. when i completed my form i used the advice on this site. I know that sometimes when our meds are working to full capacity we can feel like we can do some tasks, however at the times during the day when they have run down or we are waiting for them to kick in - we can't do anything. I was advised to fill in the form referencing my worst times during the day.
was also lucky in that my pip interviewer was familiar with parkinsons and very understanding. You can private message me if it helps.
Hi , just getting back to " normal"; after Christmas and New year, hope you all had a good holiday,
Still waiting for tribunal date, seeing my specialist end of the month,so hopefully she can help with a support letter, think my meds need a jigging feeling wierd couple times a day must be them wearing off ,and my nights are a "nightmare" sleep patterns are all over the place, 4 hours is about the average at the minute , after 3days it gets to much and I crash , anyway stop having a winge ,and wish you all a very happy New year.