CHC Review - funding withdrawn

Well, as I dreaded - after our annual review for CHC I have received the letter today telling us that funding is to be withdrawn.

Until I get the copy of the DST and panel`s notes (hopefully within 2 weeks) I don`t know exactly their reasons but I have told them already that I intend to appeal.

As I expected the letter arrived 2 years to the day that we were first refused CHC. I know that because tomorrow is our wedding anniversary (50th this year) and although coincidental I`m sure - their timing is **** !

I wonder sometimes whatever P or I have done to deserve this nightmare that our lives have become ?


36 Replies

  • Oh this is so wrong!! Can you not contact Beacon and ask them for help with this? Apart from being worn out you need help and soon. Maybe they can help with the appeal, and they might be able to get hold of the reasons easier than you will? I have never used them but know of people on the site who have and speak very highly of them.

    So where does all this leave you right now? Have you got help to care for your husband? Neither of you need this.

    Don't let the b******s ruin your 50th Wedding Anniversary. Make it a happy one. Some people on the site have just missed out on their 50th. You are NOT going to let those heartless people ruin yours! So put this to the back of your mind for the weekend if you can, and enjoy your special day.

    Congratulations to you both and a great big hug. We will support you through this. Monday is the start? Ring Beacon on Monday?

    Lots of love and hugs.

    Marie x

  • Thanks Marie,

    I will fight this - again - and I will not let it spoil tomorrow. P has been in a nursing home for almost 22 months so clearly his needs have changed but until I know why we were refused, I can`t argue yet.


  • Sorry, I meant to write that I will be starting on Monday with the PSPA, then my MP, then Beacon as soon as I know the reasons for being turned down.


  • How harrowing, just awful. I'm very sorry you have to go through this. Life isn't fair, but making it less unfair is what government OUGHT to be for! I hope the folks who get your appeal have more heart and sense than the first-round clowns. Good luck, and hang in there! Love, Ec

  • Thank you ec, your support is very welcome.


  • Totally outrageous NanBabs, what reasons did they give to justify withdrawing the funding? The only words to have about these people cannot be printed for fear of offending someone. The worst thing is having to fight again when you have all of f the other things to think about, the everyday things you have to do in order to care for him. I am so angry that I could explode the rotten sneaky b--------ds. Try to keep strong, write to your MP, kick up a stink with anybody in authority and contact the local paper. Surely surlely you will win the case. I have everything crossed for you and am so sorry that you are going through this c------p. Enough said before I go too far and embarrass myself.

    Much love

    Kate xxx

  • Thanks Katie,

    You`ve made me smile ! I fully intend doing all the things you suggest - I just don`t know if I have the energy.


  • Fight fight fight - remember the clause in the guidelines , I think it is paragraph 38 or 39 which says they have to take account of it being a progressive illness . I am not at home at the moment but When I get back I will try to find it and give you the specific details .

  • Thanks Georgepa,

    All help and suggestions are most welcome. I really feel in need of the support at the moment.


  • Omg nanbabs, bad news indeed! Can you appeal? I would! I'm currently awaiting Dads review, with dread!! I think these people are complete and absolute bar stewards!! How they can go home and look themselves in the mirror literally astounds me!! I appreciate the NHS is stretched, but for goodness sake this is a progressive terminal illness with only one outcome 😥

    Fight with everything you got and some!

    In the meantime I'm wishing you many congratulations on 50 years together, quite an impressive milestone to say the least!

    Please keep us posted and if there's anything I can do to help, please pm me x

  • Thank you,

    I will keep you updated and may message you if you don`t mind.


  • Absolutely darling of course!! X

    Ps I ended up reading all about beacon last night after reading your post, they sound v good x

  • Hi NanB

    I wonder at the nightmare our lives have become too!

    PSP is so drawn out. One is forced to watch every moment of the 'slow waiving goodbye' in every detail.

    I'm so sorry you lost the funding.

    You obviously know what to do. Good luck.

    Don't let them stretch the time scale out eh?

    Hugs to you both



  • Thank you Kevin,

    I think I know what to do but lacking confidence at the moment. I was so angry initially but I won`t give in because I do think P deserves (as all our PSP sufferers do) to be funded by the NHS.

    I may take up your offer to PM you soon if that is still OK with you.


  • Of course its OK!

    This CHC thing has had me on the floor a couple of times as I thought we would have to battle it out ion our own.

    Standard advice (received, not mine) is to bat out a letter of appeal saying you will evidence it in due course, but that meanwhile you await their explanation and a copy of the DST within two weeks as per the National Service Framework." This letter will trigger alarms and you case will be escalated for senior examination even before the appeal. It signals that you are informed and they need to be extra careful. They hate to get it wrong if it is going to go highlighted on their quality inspection. (But I bet you knew that!)

    Were with you.

    I will help as best I can, but Beacon, as you plan it, are very good.

    We fought three times... Somehow we still get it... despite no DST's being sent to us and despite no confirmation.

    Weirdly it gets harder as Liz becomes worse, they tighten their belts.

    Wishing you both the best!




  • Dear Kevin,

    I agree - it seems to get harder the worse P becomes.

    I will follow your received advice and write a letter even though I telephoned within 10 minutes of the letter arriving to let them know I would be appealing. Apparently the `head of the team` has to sign the letter acknowledging my appeal and she is on holiday until next week (she`s been away for 3 weeks) - strange then, that her signature appeared on the letter I received yesterday !!


  • Wishing you all the luck with your appeal, they don't realise how much they make people sufffer, we are trying to support our loved ones, saving them loads of money, and look what happens. I think these people should come and live with someone with PSP and see what it feels like. Our loved ones have a progressive illness they are not going to get better. Sending you both a big hug, happy 50 wedding anniversary, we celebrate ours next year xxxxx Yvonne 🎉🎉🎉🎉

  • Thank you Yvonne,



  • Hi nanbans

    Sorry to hear the funding has been withdrawn

    This is a guide and law about them

    I went on this site and it's all about chc funding etc and in there there's the paragraph 38

    That somebody mentioned

    Hope that it helps and good luck

    Sue x

  • Thank you Sue, I will look up that site ASAP.


  • This is very good - I am working through it.

    Thank you.

  • Hi Kevin

    Yeah we had our review yesterday so I got myself equipped with everything to throw at them if needed fortunately we got the good news and extra

    Hope it helps for others too

    Hope Liz and yourself ok

    Sue xx

  • Hi Sue

    Wonderful - Good for you!

    We are doing pretty well at the moment - thanks.

    I am already preparing for our next review. We were informed that if Liz became bed bound then the risks would diminish and we might then loose CHC. That point is creeping closer.



  • Oh, that is dreadful. I'm so sorry.

    I am expecting the same. It is clear that as our loved ones become more helpless we are supposed to do it all.

    I hope they change their minds but I know money is so tight. They just tick boxes and never see people. Let us know how it goes - we are all with you.

    Big Anniversary Hug from Jean xx

  • Thank you for your best wishes Jean. I will keep you all updated.


  • Dear NanaB, funding in South Africa is also C--- it's all fight and few solutions.

    Try put this aside albeit for today and enjoy your Anniversary.

    50 years is a testimony of love and patience.

    Celebrate !!!

    Much love, Althea ⭐️✨💫🌙⭐️

  • Thanks Althea.

    It has been 50 years of love and laughter, some hard times but with LOTS of patience !!!

    I took our wedding photos to the nursing home (who provided a lovely surprise cake)and our family came but P became very emotional and cried - which he has rarely done.


  • Sending love and prayers 💛🙏

  • Sorry to hear this. They sure don't make it easy do they. I hope the appeal is successful for you. Will be fighting behind everyone who having to challenge ChC, myself is going to have to go to appeal I think as got turned down a second time after full assessment this week. Haven't had the letter yet but it was started on the MDT they will be saying no.

  • Please don`t give up - keep fighting the b*****s ! I feel totally deflated at the moment but I will continue to fight P`s corner - it is all I can do for him right now.


  • It is something could definitely do without, with everything else we all have on our plates xx

  • Hi NanB

    I hope today is a little better for you both.

    I've been thinking.

    The other appeal you might consider is one to the Social Services. For CHC to be stopped the Social Services have to agree that the care needed is within their 'legal limit'. This is the regulation which forms the dividing line between Social Services and the NHS. The Social Services person at the DST (and there is a requirement that there is one) has to make a decision as to whether the care is within or outwith this legal limit. If they say it is outwith the limit then the NHS has to provide CHC.

    You have a legal right to access the Social Services records with P's permission.

    It might be worth getting P to sign a short letter appointing you as their rep. and sending a letter with it to Soc. Services asking them to give you the evidence and argument leading to their decision that P was not outside the legal limit.

    People have gained CHC merely by overturning the Social Services decision.

    I'm sure you don't need more to do right now, but I thought it might be useful to flag this up.




  • Thanks again Kevin.

    I did ask the CHC in my phone call on Friday, who was present at the meeting and she said a Social worker was included but I pointed out that we have never met a Social worker - so how would they know our situation ?

    I have POA for P so I assume I can write on his behalf anyway.

    ALL your advice (and from others) is going in my notebook so I can build a case. I may still need professional legal help but at least I can give them something to work with.

    I can`t begin to tell you how much I value your input.


  • Nanbabs

    So sorry to hear this. If P is anything like my wife it is quite ridiculous . Sec 20 of the NHS Continuing Healthcare Checklist states

    "Where it can reasonably be anticipated that the individuals needs are likely to increase in the next 3 months (e.g. because of an expected deterioration in their condition), this should be reflected in the columns selected. Where the extent of a need may appear to be less because good care and treatment is reducing the effect of a condition, the need should be recorded in the Checklist as if that care and treatment was not being provided"

    My wife can do virtually nothing for herself and speech and eyesight have all but gone so if her current excellent care was " not being provided" she could not function at all and I have no doubt that for example , without the care she gets specifically with swallow control she would be dead from aspiration pneumonia alone, not to mention all the other symptoms of this dreadful illness. Add to that the fact that there is a very clear expectation of deterioration (it is progressive and terminal after all) and the incredible unpredictability of the condition the decision seems astonishing.

    I have heard that this can be something of a post code lottery. For the record which Clinical Commissioning Group are you with.?

    This illness is exhausting and incredibly stressful without this sort of thing. I have no experience of Beacon but others have suggested them. If it were me I think I would contact them for advice in the first instance so that the energy you have left can be targeted to greatest effect.


  • Thank you your comprehensive response, I will look more closely at Sec 20.

    It sounds as though your wife and P are at a very similar stage - can do very little (if anything) for themselves.

    I included a letter and the official PSPA booklet for professionals to be sent to the panel with the DST but I don`t know if they saw it until I get a copy of the full report .

    I truly feel that `they` make it as difficult as possible for us at the very time that we all need more help and support than we have ever needed it before.

    P has very good care in the nursing home but his needs are still there even if they are being met.

    Our local CCG is Swindon.


  • How can someone with a progressive disease have funding withdrawn? It makes no sense. My Mum has CHC and we found the Hospice support invaluable with the application process. First application turned down, s cond one warranted an assessment then granted for 3 months then after 3 month assessment granted for a year.

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