Hi, I’m based in the U.K. The PSP association kindly referred my husband to DWP to see if we qualify for PIP which is the only non means tested benefit we can get at this stage. Two people from DWP came out to see us today and spent more than 2 hours in the house. My husband was present for about 15 minutes and then went to bed to sleep. Fortunately I had set up Power of Attorney for financial matters and health matters last year and I’m so glad I had this in place as I was able to answer all the questions and sign things on his behalf. They wanted to see the Power of Attorney and scanned it for their records. I’m also glad my husband wasn’t in the room to hear the questions and my answers as it’s really quite stressful explaining how PSP affects your husband to people that have never heard of PSP before. One of the first things they said was …so I take it it’s not terminal (that was in front of my husband) …so that required a tactful answer ! They were very sympathetic and kind but even I found it harrowing and exhausting explaining it all, supplying letters and details of neurologists, GP, SALT team etc. I do feel that it would have been an impossible task for my husband to do this interview as he can’t speak or write and he’d have never managed to stay awake for 2 hours. My point being the Power of Attorney was really essential. They left saying it would be up to 12 weeks before we hear back and their is a chance they may need a further assessment meeting but they hoped it would go through. Not an easy process!
Power of Attorney and applying for PIP - PSP Association
Power of Attorney and applying for PIP
hi
Sounds like you did really well, I remember when I did it for my husband, but he stayed in the room the whole time except for needing to use the loo which I had to take him, it was so stressful and answering their questions was awful with him listening. As long as they have the full name of the illness they will know it’s progressive, so they should not have needed to ask if it was terminal. His went through fine and never needed to be assessed again received the benefit for 6 years.
Good luck and remember to take care of yourself aswell.
XxHelenxxx
it’s not easy. I had DWP out to help fill out for my husband to get attendance allowance as I’m 69 I was not entitled to PIP or carers allowance as I receive my pension. The chap was really nice and dealt with me as I have Power of Attorney. The process took about 8- 10 weeks but was back dated to when we claimed. Hope you get sorted soon 💜
I have been through this to receive PIP & a gruelling 1 hour phone call as well luckily my husband was there for support if I needed it. I agree it’s a must to get POA in place before illness progresses & your not able to communicate at all, I have just appointed my husband & my sister as mine it’s essential xx
I feel for you having to address this yourself as I accept they have to ask detailed personal questions to assess need but it is very emotional having to state matter of factly how it effects so many different aspects of your life. Love to you xxxx
I agree with you wholeheartedly xx
Hi Sun-flowerwearer, congratulations on managing a difficult interview. Please note the date of it and make sure that all payments are backdated to that date - they should be. Yet again we find supposed professionals ignorant of PSP.
Are you in touch with your local hospice, they should be able to support you with this process and dwp appear to listen to hospices well.
Hi Kelmisty, no not in touch with hospice yet. We were only diagnosed officially in mid May (although I now realise that this is possibly year 3 since noticeable onset) and I am still trying to work out where we are in terms of advancement. My GP hasn’t mentioned this to us either but has referred us to a different services..which we are waiting to hear from. The people from the DWP were there to help us fill in the forms and I’m trusting they did a supportive job. They seemed very kind and caring.
I would ring your local hospice and see if they can offer support, Mums hospice is great and they don’t just support dying well. They do lots of support, guidance and signposting.
My partner has psp and we were rejected for pip... Apparemtly he wasnt bad enough to warrant pip....I was advised to apply for attendance allowance which he is now receiving after applying and filling in forms.personally..I was advised re the pip to ask citizens advice to assist in filling in the forms as they are aware of how to answer the questions apprpriately as you need to answer how they are on their worst days whichcan be upsetting . We aĺ lwant to put a more positive spin on things not to upset our dearest . I Felt absolutely furious at the lack of any assistance for genuine cases.
How absolutely heartbreaking for you. That’s exactly how I felt about the answers. I wanted to be positive too when my husband was present as aware how that would affect him emotionally and it was a relief when he felt tired and went to lie down and I could be more matter of fact. Well I have 12 weeks to wait and see what they decide. In 12 weeks things may well have worsened as changing in symptoms seems to be very rapid for my husband too. X.
Hi, I'm in UK as well & my husband had pip after he was diagnosed initially with Parkinsons & a lady came to help with forms etc to the house, at that time my husband was still mobile with a stick & could speak but 3 years after that was diagnosed with possible psp? Ir is daunting when you are the one who has to educate professionals about the illness. My gp had never heard of it & when my husband had to go into a care home latterly I gave staff lots of info I requested from psp association which was very helpful. my husband passed away 20months ago , a blessing at the end. Best wishes to you both on this journey.
That's absolutely shocking. They should be much better informed about illnesses, doing the job that they do.I hope you will get the help quickly.
Stay strong. Sending love and supporting thoughts. 🌻
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