CHC -The outcome

Yes of course! You were right! We were rejected because Bill's condition was not "complex" enough. I would like them to spend time with us to see how "complex" life can be but we were judged by a social worker who has not seen him since last February, a guy from the CHC who had never seen him and two people from the hospital ward that he was in. No reports from neurologists, the memory clinic, GP etc. etc. As you know I did not get the paperwork until 2 hours before the meeting and I had to feed Bill in that time as well.

Should I complain? Have I got the energy? I would value your opinions as to whether it is worth the effort

11 Replies

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  • YES! YES! YES!

    Lots of love

    Heady

  • YOU SHOULD COMPLAIN! No one cares if you don't....So make them care!!!!

    AVB

  • You must appeal, but also get someone to help such as CAB or local health ombudsman to ensure you have all the ammo you need to hit them with. Also complain about short notice of paperwork and lack of reports from health specialists that is to the local health ombudsman, their contact should be on local hospital website or at your GP.

    Best wishes Tim

  • Kick up a stink and make them have it! Our son recently made a complaint on our behalf and we got the red carpet treatment next time we went. They have to take all complaints seriously and try to resolve them. Write about it to your GP. too. At least you will feel empowered if you do . I know it's just another darned thing to do, and how exhausting it is, looking after someone with PSP, but I think you will feel better for doing it.

    PS. We have PALS in our hospitals here. They are there to help patients with problems and will inform the appropriate people of your complaint for you.

    Good luck! x

  • Yes yes yes I agree, our partners are terminally ill, they are not going to get better, let them come and live with us and see, what we do. Yvonne xxxxx

  • I AGREE THE CHC SEEMS 2 BE RANDOMLY AWARDED DESPITE THE FACT THAT ALL PSP PEOPLE NEED I T REALLY

    I GOT IT ON A 2ND ATTEMPT BY A DIFFERENT TEAM FM THE LOCAL HOSPICE HWO WERE GREAT- AND THEIR SOCIAL WORKER KNEW WHA T SHE WA S DOING AND PHRASED IT ALL DIFFERENTLY~ I WAS NOT PRESENT NBUT MY PARTNER WAS THERE FOR THE INITIAL MEETING BUT I GATHER ALL THE POINTS WERE MAD EAND AWARDED TO ME.

    I HTINK ITS IMPORTANT TO TAKE THE WORST CASE SCENARIO ANDENSURE THAT U R

    UP TO DATE WITH THE SCORING SYSTEM

    LOL JILL XXXXXX

    THSI REPLACES AN EARLIER REPLY WHICH I DID WHICH HA S BEEN LOST

  • Yes you must appeal.

    Do no let them have an easy ride.

    I know it is terribly tiring and frustrating.

    Our community matron is fighting our corner. She has submitted reports from everyone who deals with my wife. The package is very comprehensive, including my day diary.

    Best of luck.

  • Yes, complain, appeal, whatever but DO NOT give up. I am in the middle of exactly the same scenario. I have waited 2 weeks for them to answer my letter asking for more information as to why we were refused CHC after a 9 month wait. I waited until there was no letter in Friday`s post and rang the contact number I had been given by PALS. Guess what ? She was "not in today, ring again on Monday". No wonder everything takes so long, they all seem to be working part-time - I wish we all could do that !!!

  • My dear...you have fought each minute of this illness,many times without any energy...DON,t stop now,love Rollie

  • I am so sorr to hear that you have been refused. Awe are going trough the same procedure . Have had the meetings CHC lady we have never met she didn't even look at John or speak to him , along with district nurse Parkinson's nurse and young social worker .

    the only good thing was that they decided to a further assessment from a mental health team , that's still ongoing .. Result of that .is trying a new tablet .

    They just done realise that these illnesses are so u predictable , we cannot even plan as to whether have shower ourselves or go to the toilet without being called for commode .

    I feel the swam if we are refused I don't think I have the energy to start a

    l over again and time isn't on our side .

    On top of that I think they want us to change the care company we have been with for two years . Awe have already gone through 130 diFferenet carers !!!!!!! , the thought of even starting with another new lot fill me me with dread .

    I suppose we might handle things differently next time though ...

    I will keep in touch and let y know as soon as we do .

  • I had not heard of C.H.C until last week when G community matron sugested We should start to make plans to have a career, and would need a visit from a social worker. I see to all Graham's needs, showering dressing feeding, changing Illiostomy bag, but she insisted, also made the comment that if I did not get paid care workers it would go against us applying for C.H. C I would appreciate some feedback.

    Best wishes to all you knowledgeable friends

    Ellie

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