I am sick and tired of this CHC struggling to look after the person you are caring for, district nurse came, she has to redo the assessments, because things change, and now they are asking for a psychiatrist report, which I tried to sort out, by referring George, got a letter, phoned them up, guess what they wanted to speak to George, I explained to her, he was not able to talk much, she said I need to talk to him, I have him the phone, and she asked him some questions, then he gave it back to me, she said it was up to 10 days to have a phone assessment, then she said is he a danger to himself, I said yes he will get up out of his chair, fall over, he has stood up on the hospital bed, so yes he is a danger to himself. I asked her what was classed as a danger, she said is he suicidal? I said no, but felt like saying I was. So we have to wait. I decided to go private and pay for an assessment, it is expensive, but what can I do, our savings are going down, feel like it is a fight, to get anything. Well we have got an appointment next Tuesday, otherwise if we have to wait another 4 weeks nurse will have to reassess him. Where the the logic in all this. Stressed careers if we get sick who is going to look after them, and worse than that who is going to look after us. Yvonne xxxxxxxx

11 Replies

oldest β€’ newest
  • Omg the authorities are total crap!!

    The whole system is joke!

    I feel your pain and wish I could suggest something useful!

    Big hugs x

  • Sending you a big hug. I have not even thought about the chc yet. Being as we get our care paid for through the ss i am loath to rock the boat and from what everyone has said i don't think it would be worth the hassle. Janexx

  • Hi Yvonne sorry to hear the NHS burocracy is getting through. The idea of a phone consultation for a PSP sufferer is not just incredible and impractical, shows that they have no idea of the limitations of the condition. Hope the private consultation is not too costly and provides the results they think they need for their silly tick boxes.

    Hope you are able to relax and that George has a good night best wishes Tim.

  • Thank you all let's hope we all have a good night x

  • Oh Yvonne, when are you going away? Doesn't sound as if it's soon enough!!!

    I have discovered the secret of CHC! If there is care available, then you have no chance of getting it. OR. If you live in North Somerset, where care is as rare as hens teeth, then, like I have found getting CHC, was really easy!!! Yes, it's wonderful, I have CHC, the only problem, is there is NO CARE, so I am still in the same situation. Every time I phone to ask what is going on, saying I need this help, they just offer to put S in a home! I thought that was the whole point, giving us funding, so our loved ones didn't have to go into a Care Home!!!

    When you have your assessment, don't forget to keep saying that George is totally unpredictable and is a huge danger to himself and others! Please, please, make sure you have someone with you, to help you fight! This is not something you can do alone! Email or message me, if you need any help!

    As to who will look after us, same person that is looking after our loved ones! US!!! After all, we do have the experience!

    Lots of love


  • Thank you Heady will make sure I get help with all this, even if I have to get the professor at the hospital to get involved like he promised I will, I will fight has hard as I can to get it. Thank you Heady will email you if I need some advice, very kind of you. So sorry nothing has been put in place for you, bloody ridiculous. Yvonne xxxxxx

  • I can't get it into my head that the authorities have all this power over us, the only people who understand the problems of dealing with PSP!

    Yvonne I really feel for you, I am starting to think that I can do without all the hassle of even applying for CHC, I think I would much rather get on with things on my own!

    Sending you big hugs....Pat xx

  • Yvonnne, are you in the US? Still trying to get an aide to help Don and me here in the US. I would have told her that danger to himself was a fall risk.

    Audrey xoxox

  • We are in the UK. Well one day at a time. Yvonnexxxxx

  • Oh I really feel for you Yvonne! The whole system is crazy. We are about to start our second assessment. You should have told her that you feel suicidal. It may have made her think.

    Keep going and try and wring some money out of this unfair system.

    I will be thinking of you.

    Love Kathie xx

  • Thank you Kathie really stressful time. Xxxxx

You may also like...