Wouldn’t it be nice…

…if the support services were supportive.

My father was refused CHC, but none of the local homes I’ve contacted so far has any spaces for private/LA funded patients. All the contacts with the support people have resulted in is forms to fill in, meetings to attend, phone numbers to ring, homes to visit… hours and hours of our time and rapidly dwindling energy spent on it, and nothing useful at all to show for it, except that I’ve learned a whole bunch of new acronyms.

The only good thing is that he’s safe in hospital, and the staff who’re looking after him are wonderful. But he’s been there a month now — two weeks since they said the pneumonia had cleared up and he was “medically optimised.” It’s a daft waste of NHS resources for them to keep him there.

23 Replies

  • Hi Blots, I agree it'd be nice, but there ain't no such thing where Psp is involved (harsh, but my opinion) why can't the hospital fast track your dad for chic? What can your dad do for himself? Whereabouts in the U.K. are you? I'm sorry your having to experience this unnecessary crap and stress!! X

    Edit I've just read your previous posts, I can't understand why your father wouldn't qualify for chic? This makes me sooooo mad!!

  • He can’t do anything for himself. He can’t even press the button to call for a nurse if he needs one, and he can barely speak. It’s only if you ask a question with a limited number of answers that you can make out what he’s trying to say.

    He’s in Cheshire. We had a meeting to assess him for CHC and it was turned down, so I’m not sure the fast track would help. The problem is that the form asks the wrong questions. It’s such a tick in the box system that it’s useless if you don’t have the right set of symptoms.

    One of the homes we visited said one of their residents had just died and had been turned down for CHC less than a week before she died. It seems it’s one of those parts of the country where they’re very reluctant to agree to it.

  • Listen to me please, ask to speak to the hospice team within the hospital i.e. Palliative care team and insist they fast track your father by 5pm tomorrow for chc!! The process (even though) called fast track isn't that quick but they simply must, without question start the process!! Fight, scream, kick, and do everything in your power to get this for your dad! Your the voice for him! I'm very passionate about this, my dad has been in the same boat, with chc! Don't let them win, please don't!! X

  • I don’t care that much whether it’s CHC or LA funding. The main thing is that he’s somewhere that he’s well looked after. If they release one of the CHC beds so that he can use it, I’d be ok with that. I’ll certainly be on the phone to them tomorrow morning. And also to his ward manager, to make it clear that it’s their people who are bed-blocking, not us.

    In fact, I’m probably only ranting here because there’s nobody in their offices to rant at today.

  • Bless you!! Go for it!! Let us know the outcome please x

  • Hi blots

    Agree with what people are saying

    Don't let them until you have got care that YOU want not them they cannot move him anywhere till that . I have not long had the experience of hospital and not care in place so basically tell them to go forth and multiply till it's sorted

    Also ask to see hospital social worker and get her involved with helping you remember these people are here to help you not help the hospital

    Good luck

    Sue xx

  • My prayers are with 💛🙏

  • Do appeal against the decision regarding CHC. Have they given you the paperwork showing why he was turned down? From what you say it sounds as though his needs are 'high' in several domains. It is certainly annoying and exhausting to have to jump through all the hoops but worth it if you can get it. Do you have a hospice team or Parkinson's Nurse to help you? I completely agree with Amanda, it makes me so cross that people are having to fight for funding and suitable care at a time when they should be enjoying spending precious time with their loved ones.


  • No, we haven’t received any paperwork yet. My mother has had some help from the community Parkinson’s nurse, but I think she’s on holiday at the moment.

    I agree. It’s hugely frustrating that the very people who are supposed to be working for the patient and their health and quality of life are the ones who just add a load of extra work and stress. Surely people don’t go into a career in nursing or social work wanting to do that!

  • Definitely appeal the decision directly with CHC. The main problem is, I think, that PSP does not fit the boxes and most of the people dealing with funding have no experience of it. I'm afraid you need to make it clear that it is a progressive illness, his care needs will not get less and the progression can be sudden, rapid and unpredictable. My advice would be to keep fighting for fast track CHC. It doesn't sound as though LA funding is suitable at the stage at which your father is.

    I hope you have a better day today and can make some progress. I know how extremely debilitating the frustration can be!

    Vicki x

  • It’s certainly true that even if it’s borderline at the moment, it won’t be for very long. So, plan for today: walk the dog, then start rattling some cages.

  • Good plan. Walking the dog certainly works for me - helps clear the head!

  • The trouble with CHC is that is for nursing care not care which carers can do. My dad has just had all his CHC taken away. We're appealing for funded Nursing Care which is £155 a week. X

  • We got the funded nursing care (they said unofficially — we haven’t had anything official yet) but not the full CHC. I don’t understand how they can take it away once they’ve given it! It’s not as if people with PSP get better, unfortunately.

  • This is for my dad who is bedridden, can't move and can barely speak understandably but he doesn't have PSP but bad heart. My husband has PSP but the gp told me we wouldn't get CHC because he doesn't need nursing. I'm not sure if a point will come when he will get it. Kevin is the expert on this. Hope he is ok as he hasn't posted for a while. Xx

  • Oh gosh, you have a lot on your plate!

  • Hi Vron sadly I expect the time will come when john needs nursing care, stuff the gp, get the hospice involved for chc for john! I spoke to Kevin yesterday he is ok just busy, bless him x

  • Omg Vron!!! Why was it taken away?? Didn't the nursing home put up a fight?????

    Hearing this worries me sooooo much for everyone on here and anyone in receipt of chc!!

    It's an absolute bloody disgrace and I'm so sorry to hear this news!! If I can help in any way at all message me x

  • Thanks Amanda. Melanie has been amazing and is behind us. We just have to go through the hoops. Hope you're ok.xx

  • It's a bloody joke isn't it?! You have enough on your plate without this unnecessary stress!! Don't just accept it, Vron please! Has your does got nursing needs for medication? Surely he must have some nursing needs? I'm now going to be looking into this because my Dads review isn't far away! God help them if they took it away, I'd go absolutely mental!! Keep me posted x

  • Will do! Xx

  • Hi Blots, my dad has just triggered the checklist, and sounds very similar to your dad. We did the checklist with the neuro nurse and the social worker, and we had a lot of input. They were really helpful. Definitely worth asking to see the paper work and ask who decided what score your dad was given in each domain. You're entitled to your input as well. My dad went in to hospital with kidney failure a few days after the CHC checklist was triggered, so now it's null and void and we have to start the process all over again with the hospital's team. It's such a crappy system! Good luck to you, I hope you get some positive results.

  • Thanks. We were at the meeting and agreed with the classification they gave in each section. The problem is that the score doesn’t really reflect his condition and needs because PSP doesn’t really fit the questions they ask.

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