Hello everyone

I am more of a reader than poster on this page but thought I'd write this. I know people on here will understand my frustrations on his matter.

My husband is 54 and has been living with PSP for 6 years now. During that time he's had to stop working ,driving etc etc - you all know how that goes.

Yesterday he had his assessment for transfer from DLA to PIP. From the very moment I saw the form I have been stressed and upset. Having to sharply focus on all the bad / difficult / impossible things is very demoralising and them having to relay it all to a stranger was so upsetting.

We put a lot of effort into living day to day and focusing on what is good in our lives - I couldn't cope otherwise. I feel this experience will take a bit of time to get over.

The nurse who came to do the medical assessment was nice and appeared very sympathetic. She didn't do a physical examination as she said she could tell it would be difficult. Some of the questions were odd though and I'm suspicious of how the DWP will interpret them. 6 -8 weeks before we get a decision !!

I asked if she was aware of PSP, she said she hadn't but had done a bit of research I think. However asked some questions about when was his next MRI scan which made me think she maybe hadn't.

Anyway , it's done now. My husband spent his whole working life working in health and social care. He'd give anything to still be working, running, going to watch football - all the things he used to do. I just feel it's so unfair that we have to expose the very difficult life we have now just to get a bit of assistance.

I'm trying not to sound too bitter. Thanks very much for having this page. I know you'll all understand

25 Replies

  • Hi Dolka

    That is so young to have PSP! My heart goes out to you both.

    Just an aside first. When filling a PIP form in put down things as they are when they are at their worst.

    It has been a few years since I helped people with PIP, but the way it used to go was that folk most often got turned down and got it on appeal. That was when ATOS were the contractors. So if you do get turned down simply write saying you want it to go to the appeal tribunal. If this happens and you win your appeal it is backdated to the date you first claimed.

    Similarly with the claim you have in now. Payments are dated back to the beginning of the claim. I doubt you will have a problem transferring across to PIP.

    Wishing you the best with it.


  • Thank Kevin. We will certainly appeal if needed. We were lucky enough to get help from a friend with how to fill the form in. I imagine all will work out fine. Just stress we could do without



  • I'm sorry, Dolka, that you are so distressed. It is a sad situation, especially for such a young couple. My heart goes out to you. It sounds as if you have been doing an amazing job all this time. I hope your reluctance to share your ordeal doesn't stop you from asking for help when you need it. It's a very hard road to travel any way you do it, but going it alone is just dangerous to your health and sanity!

    How are you managing?

    Love, ec

  • Thanks for your kind words and concern.

    I will get back to 'normal ' soon. It's such a cruel disease.

    We've got teenage children who don't allow me to feel sorry for myself for too long. I also have a job which I love and helps me stay sane.

    I'd love to feel that sort of carefree happiness that would happen pre-PSP if you know what I mean.

    I know something will happen soon to make me smile, laugh or feel good !


  • Well Kathy - Your reply has made both Liz and I smile.

    Thank you


  • And yours has made me smile. That was easy !!!!


  • Something funny has just happened. After I replied to you I took the dogs out. When I went out I noticed the sky was lovely and pink. I thought I'd walk to the top of the hill and take a picture of it to post here as it had made me happy. I met a neighbour and was chatting and when I looked again, the pink sky had gone. Oh well.

    As I was walking home I found a wee lost dog. I got one of daughters to come and get it. We tried to phone the owner-no reply.

    She did phone back and it turned out that her dog was at her parents who live nearby. So it all turned out well.

    It's odd , small things like that that I believe are telling me to keep going. Does that make sense??

    Sorry for the long/odd post :)


  • Hi

    We had an assessment done a year ago for PIP, and at the time I thought all the things asked and the few things they asked C to do were a bit odd and I thought to myself, if you'd had asked him to do things slightly differently, you would be able to see how bad things were, abs much to my annoyance Colin was able to get every word out perfectly and fluently, when he could hardly out a sentence together any other day. But when we got the letter he had actually scored quite highly and got the highest amount for movement, and the switch from DLA to PIP actually made us better off.

    So please don't stress, I'm sure it will work out and if the assessor, has read up on PSP then they will see his prognosis.

    I'm sure it will all work out for you, once you have PIP in place, you may want to see if your entitled to reduction in council tax, we were.

    Good luck xx leave it in the hands of the power greater than us now, and get on with life.

    Love and hugs

    Helen xxx

  • Thank you Helen. This forum is just so great as I know you all understand perfectly.

    It just seems unnecessarily cruel to have to go through all the horrible ways this disease has affected him. It is what it is though and I will pick myself up and get ready for the next challenge!!


  • I always find it painful having to spell out and focus on the negative in front of him. Its very upsetting.

    love, Jean x

  • That's exactly how I felt Jean. He is very stoical normally. But I know it really hurts him to realise how bad things are and that's sadly what happens at these types of assessments. I hate the visits to the Neurologist too. I feel it's just documenting a gradual decline.


  • Thats right. No-one can offer anything. Chris is now bed bound so there will be no more outings !!

    Jean x

  • We went to a local charity who filled the form, said that if we weren't awarded the top rate they would help with appeal and represent us in claims court. It was only a local charity but sure there must be similar throughout the UK.

    Kate xx

  • Thanks Kate

    We will certainly look for help to appeal if needed.. hopefully not though- life is stressful enough!


  • Hello Dolka,

    My husband was too very young to get this disease and your story just reminds me of our journey. We also found it very frustrating and complicated filling out the form as it was again difficult reliving all the difficult situations we were dealing with. We got the highest level of PIP and the money was sorted quite quickly so hopefully you won't have to wait to long.

    Again the disease isn't well known and sometimes I feel I knew more than the doctors and nurses from living with it day in day out. We just managed the best we could and took every day. I again work and that definitely keeps me sane.

    Ask for help when you need it and don't do this alone as you need to keep healthy yourself. I ended up hurting my back at the beginning of the year and that was so difficult as my husband couldn't do anything physically for himself so we had to get the carers to come in more and help.

    Take care and keep smiling 🙂

    Lisa x

  • Thanks Lisa

    I feel so bad for him as he's only 54 and would still be working if he could.

    All we can do is live day to day which I've come to terms with and is fine. You learn to prioritise.

    I love my job ( I am a nurse specialist) and it definitely keeps me going. We don't need help just yet but I worry about when we will.



  • Hi

    We had assessment when rog was 59 he was deemed fit for work so we were due to go to tribunal, i just gathered even more evidence from drs ,ot,physio gp etc. Never had to go ! They are all obsessed with evidence, so if the worst happens do not panic, we found the carers association invaluable as they have volunteers who are ex govt employees who help fill in the forms .

    Keep smilimg


  • Thanks Julie

    I actually feel better now that it's over. We will get the outcome in 6-8 weeks and deal with what comes from that. I can't see how it could be anything but ok, however you hear so many negative things about it.


  • my husband is 57 and has had CBD we recently sorted our claim for pip and recieved the highest rate.

    we used the PSPA to help with the forms and they sent a lovely lady from the works and pentions to fill it in.

    We had the medical was heartbreaking as they wanted him to answer all questins himself and as you kno its not always that easy.

    He was also upset as he had worked for 41 years and never claimed a penny. The lady had to explain to hi. its to make our lives easier.

    I hate this illness its cruel.

  • Hi Kaka

    Thanks for replying. I am getting more hopeful that it will be ok. Surely they won't put us through it again ?

    It truly is one of the cruelest group of illnesses.


  • Boy do I understand and everyone else here I'm sure. Keeping you in my thoughts and keep posting. We will help each other.


  • Thanks Cuttercat

    We are members of a club nobody wants to belong to ! However it definitely helps to know we are not alone and there's a whole lot of folk out there who understand the issues we face


  • Hi,

    Ruth (who has early-ish stages of CBD) got assessed for PIP back in March. She got awarded the lesser award of £55 a week (still very helpful!). She did not get the maximum award of £110 because she is still able to walk 200 yards with a rollator - so did not get the amount allowed for mobility. The Parkinson's nurse, who we saw for the first time last week, said that she should be on the higher award. I will give it a go but I am not sure how I can get around the fact she is still relatively mobile.


  • Hi Richard

    I think the key to this is the descriptor that they need to be able to do the "task" reliably. Which means safely, repeatedly and within a normal time frame. And I think for at least 50% of the time.

    Others might know better but that's what I was told.

    Best wishes if you have another try.


  • Kathy,

    Thanks. That is interesting. I will do more research as every penny helps!


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