Just got the letter this morning - CHC funding rejected - passed all the recommendations of the various panels - turned down by the final finance panel .Will obviously appeal but it will all take more time so my care plan is up the spout for the moment as I can't keep paying out Β£100 for night sitters three times a week .To do that I have had to stop my day care except for two hours - so I will have to do a major rethink . Getting up in the night sometimes over a dozen times doesn't seem to constitute a primary health need nor having to put my wife in a standing hoist to keep her upright whilst I wash her and dress her .The fact that I keep her clean and her skin in good condition counts against us - if I didn't try and let her get sores and smelly would probably have got us extra points . Feeling very disheartened - I give my wife 24 hour care and some bureaucrat somewhere deems she doesn't need it. I suspect if it said motor neurone on her notes and not PSP it would have been rubber stamped or am I just being cynical .

A "fed up " Georgepa

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  • Oh Georgepa, I am so sorry for you and no you are not being cynical. If only the bureaucrats could actually see what you do over a 24 hr period then you would sail through all the panels. Unfortunately It always come down to finance in the end.

    Are you in the UK, has your wife been referred to social services and if so do they have a Direct Payments Scheme where instead of them providing carers they give you a monthly/ quarterly payment and you then employ your own carers. We have it here in NI and there is also an Agency that will look after the wages side for you. Haven't referred my husband yet as he is still in the early stage of PSP and we are managing ok so far.

    Good luck with the appeal. Sending you the biggest cyber hug ever as you deserve it. Nanny πŸ™‹πŸΌ

  • Unfortunately our pension is tied up with property ( we were self employed ) so in order to go below the magic Β£23250 of assets before the county council step in we would have to sell the assets which produce our pension and when we have spent the assets then we would get help - real catch 22 situation .

  • We're in the same financial position [as self employed ] It upsets me to think that after I have cared for C. I may be left dependent on the State with a tiny pension, although we had saved sensibly.


  • Georgepa, I am so sorry but we are in exactly the same position as you are.

    Also, I think I have cared for P too well with regard to skin condition etc. All in all the more we look after ourselves or our loved ones (financially as well as physically) then the less we are offered from the SS or the NHS.

    I am trying to appeal the CHC refusal at the moment but I am now told that the contact I was given has `gone off sick` (some irony there perhaps ?) and they are attempting to re-allocate her cases i.e. several more months delay causing yet more worry !

    We have to soldier on because we have no choice. Good Luck.


  • George I think it is Β£23.250 each .But please check. Hope you get CHC keep fighting

  • No it definitely only relates to the person who is claiming and not their partner .

  • Although beware joint bank accounts

  • Four changes of pajamas et al. this night. I'm exhausted, and so relieved that the holiday means I can try for another hour of sleep. Nothing like as bad as your situation, George. I can't imagine how you are managing. I can't imagine how I will do it when it comes to that point.

    Don't let the bureaucrats grind you down. The practice of our insurers in general is to turn people down at first just to winnow the field. You have to keep at them, which is wrong, of course. I wouldn't be surprised to find your officials doing the same. Appeal. You'll win in the end. And hang on. Love and peace, Easterncedar

  • Oh, I am so sorry, George,

    Its disgraceful. We all know that we are penalised at every turn because we care for our loved ones so they don't have the falls and damage.

    You need to appeal, of course, but its exhausting and financially worrying.

    Big hug.

    love, Jean x

  • Thanks Jean it's a pain and more delay from a lot of people who haven't a clue about PSP.

  • So sorry to hear your efforts are not to to pen pushers liking I really think some of them need to walk a mile in your shoes. Definitely appeal and keep the diary of events upto date.

    Hope your wife does not have a fall and damage herself though M's fall last year when she broke her arm did make getting CHC easier as they (bureaucrats not nurses) thought I may not have been caring for M and had let her hurt herself.

    I think there is a new direct Payment system set up under English NHS for care of chronic conditions. As I'm in Wales I cannot tell you how to claim or where to find out try CAB.

    Good luck Tim

  • Thanks Tim - we have been averaging between twenty and twenty five falls a month- lots of bruising but no broken bones as yet ! With the decrease in mobility over recent weeks the falls have become less as my wife does not move without me by her side . But even when I am there when I get her upright she is already toppling over and it is only because I catch her that she doesn't go down which is presumably why the OT has given us a mechanical standing aid which looks rather like a medieval torture instrument .But yes we shall appeal but it all takes so long .


  • George, if you haven't been doing this already, make a note of all falls or falls that you have stopped happening, also of any other worrying behaviour . It's funny, but beurocrats seem to take note of things in writing and I would give each of them a copy of your list at the next meeting. I did this for another reason and it looks shocking when its in black and white. It also made me realise why I was so stressed! Good luck! x

  • We have kept very comprehensive records - unfortunately you never get to meet the bureau carts who make the final decision - it is all down behind closed doors .At the moment I am trying to find out exactly what I am allowed to submit with the appeal . . So far I have been given three totally different routs to go down so finding the most effective one is the first task .

  • As if you haven't enough to do! Oh dear, hope you get some help soon. X

  • So sorry, Georgepa. That is just so wrong.

  • I suspect you will be right! The joke is, Motor Neurone is even rarer than PSP, but they have managed to get more awareness than we get!!!

    Remember falls are not just the ones that end up on the ground, its the collapsing into a chair, falling onto the bed, you holding on tight to steady her. Even, with the standing hoist, she is not safe from falling, unless you are holding her up.

    Everybody going through this, don't forget - "IT IS TOTALLY PREDICTABLE, THAT YOUR LOVED ONE IS UNPREDICTABLE". I can not stress enough, and I am sure others will back me up in this, you HAVE to state everything on the worse day possible, without you there to hold their hand, a stumble, with you holding on, is a fall, without you! A bottom in pads, will be sore and covered in a rash, without your intervention! Communication, just because you guess what your partner needs, ARE YOU RIGHT??? You don't know, so get that across! Remember, CHC funding, is for people who need social care because of illness!

    Best of luck George and everyone else going through this horrible situation of having to prove that your loved one has a life limiting ILLNESS,!!!

    Lots of love


  • So sorry Georgepa. The system is horrible! As you say, the better we look after our loved ones the less likely we are to qualify. Perhaps we should all go on a world cruise (together??) and leave the state to pick up the pieces at home! Not very fair on the PSP sufferers though so we struggle on.

    I am very worried about how long I can go on self funding the carers we have as we have few savings (certainly under the Β£23,000) and what we have got will be used to provide the wet room we need. We have been turned down for a Facilities Grant and for help with care.

    V xx

  • You must apply for a social services financial assessment - once your assets ( and your home does not count ) go below Β£ 23250 then your local council will pay for care.

  • Unfortunately not in our case. We have had the SS Financial Assessment and although we easily qualify on the savings (or lack of them) they take the small private pension that D paid into for years into account. They will not discount half of it despite it being MY only income now and in the future when I am on my own. We are penalised for prudence. ....and because of the changes in pension age I will not get a State Pension until I am 67.


  • Oh Georgepa, that has made me so angry. The system is so unfair. I wonder if they see you are paying for help now so think you can continue to do so. How can you have a fair system when it is different people making the decisions. I've just looked at Cs CHC forms and he was at low risk of bed sores at that time but we got it.

    Yes, definitely appeal.


  • Hi , I am very confused. We don't have have any carers. G's community Matron, is very concerned, he is deteriorating ,so she is worried about me, she gave me a print out for C.H.C . and some notes . The confusion is...... I have just read replies saying how much money and houses they own, .so cannot get it, but C.H.C is not means tested, only social services, the reason why we don't have them.

    G is 79 next, he needs 24/7 care, so I don't think I will have the energy, for endless form filling, I have agreed with his Matron, I know the day will come when I will need help.

    I am so sorry Georgepa you have been been turned down.

    Love Ellie

  • Don't give up I won't . Your community matron and /or OT should come and asses wether he qualifies for being properly assessed and then if he does they will come and do the assessment with you present . You don't have to fill in any forms they do all that .You just have to help your husband with answering the questions and you have to score so many 'Highs" and "moderates " to qualify . There is no means testing about this . If you are recommended as qualifying then it goes before your local healthcare trust's finance panel who decide on the evidence presented wether or not to grant you funding - that's the fence we fell at . So tell your community matron to pull her tiger out and get on with it . Goodluck

  • I don't think our paying for help comes into the submission - we saw our Dr this evening and she just said it was ridiculous - it was as if PSP did not count as a medical condition and that she would write any supportive letters we needed for our appeal and she was sure we would eventually get it . Basically I think it is more to do with budgets than healthcare if the NHS can pass it on to the County Council and save themselves the money then that's what they will try to do given half the chance . Still we will battle on - but sometimes one just feels one is fighting a blancmange .

  • Oh Georgepa,

    How this infuriates me, how can the so called "know it alls" make such decisions when they are living their charmed lives sitting behind a desk and knowing absolutely nothing about the stress of P.S.P that only we encounter!

    Sorry but the wrong people are making these decisions, maybe we all should be on their panel of adjudicators, only then there would be some true to life decisions made!

    Sorry Georgepa, rant over!

    Sending you love and big hugs....Pat xx

  • CHC is a joke.

    My wife cannot do anything, apart from breathing, by herself. We have just been turned down for funding. They really do not understand PSP, nor do they try to understand. My wife would have a better chance if she was by her self. They punish her because she has me.

    Oh well..onto the appeal.

  • Georgepa, I really feel for you and hope that you will persevere with your appeal. I live in South West France where things are different although, when the system allocated Roisin 74 hours home assistance a month - the cost of which we paid but claimed 50% back from income tax - I had a feeling that the calculation was also based on my own state of health; I was clearly able to provide 24/7 care with the minimum of respite. How long I could have continued I still wish could be put to the test! My brother in the UK has been providing 24/7 care for his wife for nearly 24 years but still cannot get CHC; he says it is partly to do with income but I suspect the final decision is taken with his own sound health in mind. He will be 80 next week.

    It seems to be something of a lottery. Bon courage!


  • Merci Christopher

  • Where I live nobody gets CHC but go over the border to the next authority they do. How can that be fair?

  • Georgepa - poor you

    This is what is coming through my mind *%&%$(*^$^&%$(^*%$)&^%&( and many other birds names.

    I just wish some of these people could spend a day with any of the PSP sufferers and the carers so they could understand. how heartless !

    have you looked into grants giving charities that could help?

    ( but I hear you say - but when? as I have other things to do)

    take care

    big hugs


  • You are so right! We are penalised for caring for our loved ones. Sending good wishes, sympathy and hugs. Keep strong.x

  • Yet another totally unfair decision to deny CHC funding to someone doing his best to care for his partner to the highest standard gains against all the odds. It seems that the panels who award this funding are totally devoid of common sense and compassion. I wonder how they would cope if the boot were on the other foot. What seems so silly is that it must save them money in the long run.

    Keep fighting for what should rightfully be given, you should not have to go through this extra stress but best of luck.

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