The fight begins into why my father in law was refused CHC

It will be 2 weeks tomorrow since my father in law passed away from this cruellest of diseases. We had a beautiful service for him on Thursday and I vowed to him that I am ready to fight the NHS as to why they refused CHC. I have already made a formal complaint about the new community nurse and they are taking my complaint seriously. My Father in Law donated his brain and spinal cord to research and with God's holy help maybe a reason or a cure for this disease can be found through this selfless act. It is a great comfort to us that his suffering may not have been in vain I fell I need to fight this battle in his name and get the NHS to understand that people with PSP need nursing care to help them and their carers live out this disease in comfort and dignity either in their own homes or in care homes.

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31 Replies

  • hi capsey

    it is good that you are continuing the fight for ur FINLAW

    He would be proud of you

    as we all are on this site!

    and we appreciate wha thou are doing in your time of grief too

    lol Jill

    and hugs an d xxxxx

  • Thank you Jill x

  • not at all capsey 31

    lol Jill

    hugs and xxx

  • Hi,

    I'm really sorry for your loss. This disease is truly awful. My mum is fortunate enough to have CHC and we had very little battle to get it. However we wouldn't have been without it and appreciate how fortunate we are.

    I did experience some difficulty when it was reviewed at one stage however, and had the joyous task of reading the framework. You can find it here:

    Along with other useful documents here:

    Ultimately, I believe that all people with PSP are eligible for CHC and should be cared for in the comfort of their own homes where possible. I fully appreciate how angry you must be that your Father in Law was denied what should have been a minimum care package to preserve as much dignity for him in his last few months, weeks and days.

    I am a qualified solicitor and if there is anything I can do to help, please do feel free to contact me on I know how hard it is to think straight sometimes when you are mourning the loss of a loved one.



  • Thank you for your offer of help and the links.

  • Hi Catherine

    Thank you for that information,my husband suffers with PSP he has had it for 51/2 years,although he isn't at that stage yet I know it will come,so I have saved this info to refer to.I know it will save me many hours of time,and thank you for your generous offer .I might just take you up on that one day. I don't often reply on here but I do read all the posts and it is so lovely to get the support help and answers to questions.

    Kind regards


  • Hi Capsey, We were very fortunate in securing NHS continuing health care with our first application and was very surprised as I know how difficult it is to get. I wish you every success in your quest to back date your claim. I caught the end of the Radio 4 BBC radio programme 'Money Box' last week when lots of folk phoned in about CHC and how they could backdate claims etc. The presenter indicated that thousands of people are doing this at the moment and there is a huge backlog of claims but that they should keep on trying. I think he also said that it will be a longer wait for those who have already passed away as there are thousands of claims from those still with us which have not yet been decided. I wish you every success Capsey but please don't let it dominate your thoughts. Keep up the fight but as time passes and your grief is not so raw I hope you and your family can have fun again and live this very short time on earth to the full.

    In my thoughts and prayers.

    Nanna B

  • The sad thing is they cannot backdate care or bring back our loved ones... xxx Valerie xxx

  • This is not good enough Nanna!

  • I fully support you. Not only do many in the medical profession not know about the disease they don't seem to research it when they meet a case. It is also very frustrating and so stressfull when you are told that you are not entitled to chc and yet in another nearby area others are funded and very rightly so,. I believe it is ignorance of the impact the disease has on daily life and that, as I have been told, people don't die from it but die with it. There is no understanding that without special care sufferers are at risk of life threatening illnesses that will shorten life much more quickly than if they have special nursing care. It is not just about personal care as I have been told. Sorry for the bandwagon but making sure everything is sterile when giving my husband his medication through the peg and using special body scrub to reduce skin infections and checking for sores etc. and certainly knowing what to look out for is medical. Detecting chest infections, ear infections, preventing choking when something goes down the wrong way is medical. The nursing profession is given training for all this and on how to give injections etc. yet we, looking after sufferers are not and are left alone to read up on it or ring 111 for advice. I don't understand. Oh well, happy days!!!

  • I agree with you . Why is it you that is doing this? You are his wife not a nurse. This is why I will continue to support PSP and fight the NHS. Every person in this country is entitled to free medical care and yet it's nearly impossible to get CHC at home.

  • I am so sorry he did not have the help he needed and the burden was all on his family. And I congratulate you on the donations on the behalf of others. My husband died so quickly that I did not even think of that until I read another post on this site. So many things were not done because of the suddenness of his death. We all think in terms of PSP taking years and years, but there are some cases where it is sudden. My husband was under hospice care for his disease but his comorbidity was atrial fibrillation. I personally think he died because of his heart. My best friend is a hospice nurse in NC (since the 70s!!!) and she explained that if rapid breathing did not slow down with the use of morphine, it was a sign that it was heart involvement. I'm very sad he is gone, but if it took his heart to get him to a better place, thank God.


  • Please don't regret anything about your husbands passing the important thing is that he is no longer in pain or distressed. May he rest in peace.

  • This is an important fight! Don't stop or give up. Those who follow will much appreciate your efforts jimbo

  • No way Jimbo!

  • I too am fighting for my mum. It's a very lonely road. . . Even less help in Southern Ireland ... I won't give up. Valerie . Email

  • Hello Valerie I am from limerick originally. I will e mail you later today when the football is over! Anne x

  • I am doing this for you and you and you!! I will always support PSP. My father in law donated his brain and spinal cord for research. We had a beautiful service last Thursday with immediate family flowers only and asked for donations to PSP instead. But what is eating away at me is that a so called community nurse has the final say on who gets CHC or not. So all the reports from every other professional involved in his care meant nothing!!! Surely this is wrong? Should it not be when PSP is the reason we apply for CHC that the help is available immediately? I know it's to late for us now but it's not to late for you.

  • Dear Capsey31, Just seen your latest message and I know just where you are coming from. My parents were living in a very rural community in Wales and like you we were dependent on the recommendation of a community nurse. As everybody knows everybody's business my parents were thought to be very wealthy. They were asset rich but cash strapped. Mum had been a teacher in London and dad a policeman and various other things and both had worked all their lives and scrimped and saved to get what they had. I could make no sense of the assessments on my mother and dad was left to wait on her hand and foot until he fell for the last time and could not get up and never walked again. The PSP now showing its face more clearly. Mum was 98 and dad 91. I do have a suspicion that our cc nurse was doing a bit of social engineering and leveling as, of ,she was seeing many poorer village folk. Perhaps she felt it fair to make my parents pay as she thought they could and should afford it. It is only a suspicion of mine as I cannot think of anything else. She was actually trying to do what she thought was a good and fair thing, but it is not what the Law of our land says. The inheritance tax lot are now getting their cut so the government gets it back one way or another any way.

  • your community nurse/ matron should nOt have refused the CHC. LOL JILL AND A SMI,E HUGS AND XXX TO YOU

  • I am also fighting for my mum and my dad! I moved them from Wales to London and very quickly they both ended up in hospital in the borough of Waltham Forest. From the hospital both were given CC funding but they said my mother was so sick arriving in London that they were going to claim from Ceredigion for her. They put them in a double room in a nursing home but mum died 13 days later and so WF did not bother. However, before I could get my house ready for them with 2 hospital beds mum and dad had to spend about 6 weeks in a nursing home in Wales as they were too sick to stay in their bungalow. I am claiming retrospective fee for this. Ceredigion have re-assessed my mum and have again refused the claim. I have just spent 3 days filling in forms in to fight this. Mum was in end stage Altzheimer's and dad, well they did not know what was the problem but obviously some serious neurological condition. Both were basically just heads in a bed, poor things, they could do nothing, absolutely nothing for themselves. Poor dad survived for six years like this, now waiting for confirmation from brain donation on his true diagnosis, I am so glad he is gone but miss him so much. Someone wrote on this site, not so long ago and mentioned the Coughlan Test.(sorry I cannot remember their name) It is about the land-mark court ruling on Ms Coughlan. I referred to this and have used it in my response back to Ceredigion District Council and then threatened them with going to The High Courts. Whether this will do any good or not I do not know. My letter went off last week. I will let you know. Yes we must fight for justice and for others following our path. It is exhausting though!

  • I see that in my last two posts I have made a couple of typos. Sorry, but I am so angry at the injustice of it all and so tired of arguing my point with the authorities and trying to sort everything out to my children's satisfaction that I hardly know what I am doing. I now have to write a revue on all my parents' financial activities for the past 7 years for Inland Revenue. I cannot remember half of it as I was to-ing and fro-ing between London and Wales for 15 years, trying to bring up my teenaged children on my own, and trying to sort out their business too etc etc. My parents were really old and so poorly for so long. I wont give up though even if I need CC myself by the end of it all. That is how I feel just now. And when I think of the care provided in the care homes, well, I just despair of the human species altogether. One thing is for sure, I will see that I do not end up in one.

  • so sorry i did not see the second blogg until i had posted the first one - you sure do have your cross to bear - -but plese do take care of yourself as so may people depend on you -

    love and hugs

    sharon xxx

  • how wonderful that you are carrying on the fight for your dear parents and for us too - thank you and please do llet us know the outcome

  • Thank you Shasha. Will keep you informed.x Anne

  • Hi capsey31

    So sorry to hear your news. We are only a few steps from needing CHC. Did they give any reason at all for refusing this essential service?



  • I have made several attempts over the past five years at getting CHC funding for my mum and was refused each time as I was told she didn't meet the criteria of needing continuous nursing from the district nurses! However last May she developed a grade 4 pressure sore behind her left knee (which is contracted). When she was in hospital in July for a PEG replacement, a switched-on Sister was concerned for her health and requested a CHC assessment before she was discharged. It was done with me present and I was told by the CHC Nurse Assessor that we would get it purely down to the fact that she had the pressure sore and because of her cognitive impairment! Less than a week later we were informed it had been agreed! It just seems so unfair that some people get it and some don't and it takes a pressure sore to swing it!

    Best wishes


  • and i thought i was the only one experiancing this i have asked for suppot with my hasband just simple things like incontinent pads 3 moths later still waiting all i get told there is cut backs

    sorry for the rant

  • No apologies necessary, laila, this is the place for ranting! (And yours hardly qualifies as a rant.) I'm sorry you're not getting the help you need. I hope that changes soon. Hang in there, Easterncedar

  • hi capsey

    i too hav edonatte dmy brain ot researchi int o PSP

    and hope it will help others too

    lol JIll

    and hugs and xxxxx

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