Chc Annual Review and needs

Hi All

Just want to get a few things clear in my mind for our impending chc review

As Dad is now in a nursing home they will take control of this review unless we think it necessary to be there.....I'm not entirely sure that our input at this review would be a good thing.....I need to be mindful of the fact that Dad is coming up to 5 months of being in his new home and is being well cared for and therefore appreciate that the nurses and carers now understand him and his needs more, i.e. We no longer do the caring, so they know this side of things very well

I have ensured the home are aware of all the facts (some of which I probably don't need to remind them of, but have) i.e. Bed bound, has no movement apart from very slight hand/arm movement, risk of bed sores, confused, finds it difficult to converse and make himself understood, hallucinates regularly, unable to feed himself, risk of chocking and aspiration, all medications listed etc etc

At present we don't have a date for the review and I won't be reminding chc! But being prepared in my mind is necessary!!

I am all too well aware that chc can be removed and want to be ready for this possibility!

Any tips you can share on how to try and ensure the chc continues would be very much appreciated!!

X

38 Replies

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  • Hi Satt

    I am not experienced in reviews taking place in Nursing Homes.

    That said it does involve scoring and I know that at our last review I had to argue very hard in places. I would not be confident that a Nursing home staff member or manager would do that. To some degree they would be biting the hand that feeds them. Remember CCG's block purchase some beds with homes - So its quite big.

    Also I'm afraid to say CCGs are tightening up all of the time. One of the things they have been trying on is saying the person is bed bound and so the risks are diminished, but we all know that the assessment should be 'as if' no care is going in.

    Just my thoughts

    Love

    Kevin

    xx

  • Thanks Kevin, you and Marie have changed my perspective and I will now be there for the review! I wasn't quite sure about it but that's why I posted for advice and your advice has always been spot on my love! How are you and Liz? X

  • Satt you are a trooper.

    I check things out here just like that too. There is so much skill, knowledge and support here. I would be lost without it.

    I just sit on a lot of policy books otherwise I wouldn't reach the keyboard so well!

    Not quite true - but nice image eh? (Chuckles)

    We're getting by. Liz drifts away from me some days now. When I take her to the commode in the night she looks at me blankly as if she does not know who I am... You've been there I know. Right now she is 'here' and we are good.

    She can be the devil for winding me up sometimes and that really knocks it out of me.

    How is your Dad?

    Good luck to you all... and waiving to your amazing Mum!

    Love

    K

    xx

  • Hi Kevin bless you, I know exactly where you are and it's bloody hard!! How are we? Aha....mum n me, stressed as per! Dad v confused, love him, it's tricky (understatement) and we hate it, (bet my life on it though, not as much as dad does)!! πŸ˜₯ X

  • Oh, Satt

    Yes, we are in the same place!

    And, I hate it.

    How much more suffering?

    You have all been through so much.

    Hugs

    Kevin

    xxx

  • Still awaiting the result of our annual CHC review at the end of July, although I was definitely given the impression that it would be withdrawn because the nursing home "are meeting his needs". I attended the meeting and took the original DST forms with me to argue (if necessary) every point.

    xx

  • Hi NanB

    Just for the saying, because I am sure you know.

    Saying needs are met and therefore no qualification. Is, to be frank, a cynical ploy.

    The National Service Framework makes it very explicitly clear, and emphasises, needs must be assessed as if no care is in place.

    Stick to you r guns on that and keep repeating it to the assessor if they try that. Also ask them to record that as your comment. They are required to record your comments as well.

    General note: Take notes in the assessment and let them see you doing that. It does encourage better adherence to the regs.

    This is more of a broadcast really... I know you are up to speed on this.

    It saddens me that I need to write about our NHS so.

    Kevin

    xx

  • Thanks Kevin,

    I tried hard to be prepared `for a fight` but I still felt intimidated despite the fact I think I argued P`s case.

    I`ll let you know when I hear - the waiting is a killer !

    xx

  • Hi

    Yes, me too. It is a fight and they have such power. Yes, we can appeal and challenge... But in those moments of the assessment I feel our future hanging in their hands.

    Some of the things said to me by assessors - twisting English beyond measure (the Framework guidance words) - Is beyond belief.

    Our financial viability hangs in those moments with poverty being the dark abyss looming.

    Sorry to be so poetic, but it is the way it is.

    You're experienced and have a strong voice. I am sure you did well.

    Wishing you success

    Kevin

    xx

  • Thanks Kevin,

    Your support (and all on this wonderful site) are invaluable.

    Sometimes people have said I am very calm but what they don`t know is that I`m like a duck - swimming calmly and easily on the surface but pedalling like mad underneath just to keep afloat !

    We are all in a nightmare situation, not of our making, and we are all just trying to do the best for our loved ones.

    xx

  • Best of luck BTW

    :)

    xx

  • Nightmare isn't it? X

  • Satt I agree with Kevin. You need to be there to watch the way he is scored. I had to intervene a few times when G was going through the scoring process. I don't trust any of them now!

    Marie x

  • Thanks Marie! Again, massively appreciate your input!! The trust I have in my friends here is second to none! You are the family I've never met, but wish we could!! Thanks again x

  • Amanda one day we will meet! I keep threatening you all with that so you will probably all go into hiding now!! 😁

    Glad to give my input. If it helps you or anyone else then that's great.I know what it felt like not knowing what to do! I am still like that but for different reasons now!

    Marie x

  • How is your dad, Amanda ?

    I'm forever wanting to understand " quality of life " . I had a very simplistic view I now think.

    I'm asking because Chris seems content just in bed. I have initiated his life all along and now I don't know whether to just leave him or to initiate moving him into chair, wheelchair etc.

    I am sort of left not sure of my role. The doctor at hospital felt he just had weeks left. How does one assess these things ?

    I know you don't know but would appreciate your view.

    love, Jean x

  • Aww darling Jean! Where to start? All I know is, it's a constant (massive strain) constantly worrying, constantly crying!! With my Dad, I take it day by day, with hoisting, is it a good day, is it a bad day? Normally the latter!! It's so difficult to know what is best? Yesterday was the summer party at the home and for the residents including my Dad it was brilliant, for me it was a horrific emotional strain! Seeing something quite simple, watching my Dad and all the other residents was heartbreaking, they ask for nothing, and are so easily pleased! Hateful Psp!! How are you coping Jean? X

  • Struggling is all I can say.

    He is so patient and stoical. I am carrying all the anger. Its tiring .

    xx

  • Jean it is no use feeling angry as it won't make PSP go away. We all want it to but we all lose?

    I think seeing how your hubby is doing from day to day is the right thing.

    You must be worn out by now? You have been amazing and I am sure he appreciates your love and devotion even if he doesn't always show it. Remember it's PSP not him!

    Hugs to you both.

    Marie x

  • Jean

    How is Chris now? I know in sheer desperation I rang PD and spoke to a nurse. She was really nice and told me in her opinion G had only weeks to months left and that he could go even sooner if he aspirated. She was absolutely spot on!

    His Neurologist never really told us anything and he had three visits from the GP! How do these people sleep?

    Lots of love to both of you.

    Marie x

  • I'm really just tired and sad. Its a great relief to have carers taking on the personal care. But its bit like being in limbo. Chris can't converse at all. The frustration of trying is painful for us both.

    However he is not in pain, feels loved, family and friends have rallied round. He watches tv, listens to music and enjoys his pureed food. His swallowing is getting worse so its a case of how quickly that progresses - or aspiration infection. He is wasted now but is a strong man.

    I don't like seeing him like this but dread when the time it is over.

    You know.

    love, Jean x

  • Oh Jean, we all know how much you love Chris and when he goes you will be lost. I have just come back from the Cemetery and had a really good cry. I feel so lost without Garry. It always upsets me when I go there and I haven't been for a few weeks because of it. Maybe I am making things worse staying away for a while and then going again? There is no right way to do this I suppose. Jean you will find your way and we will always be here for you.

    So many of us know how you feel. You want Chris to stay but don't want him to suffer from PSP. Sadly all our loved ones have been cursed with it. I remember at the end praying for Garry to die as it was so painful to watch him suffer. Nobody should have to go through that. He knew he was dying and although he was scared he was ready to go. You have been so good to Chris. He is a lucky man to have your love.

    However sometimes people stay because they are worried about their other half. I told Garry I would be alright (I lied!) and told him it was alright to go. I miss him more than words can say and I suppose I always will. I have no idea how long this feeling lasts. Maybe forever for some?

    God bless you both. I always think about you because you are an amazing woman! Plus you love Yorkshire! So do I.

    Marie x

  • Yes. Wish I could get up to Yorkshire now.

    Jean x

  • Dear Jean

    Yorkshire is not going anywhere. At least not as far as we know? I know you wish you could take Chris there too but sad to say he is now too far along the horrible road.

    You will be able to go back to Yorkshire and remember the good times when you are able to. Take care of yourself and be there for him.

    In the meantime you can go to Yorkshire in your head? I often do! Whitby is a place I would like to go back to. However the fish in Bridlington is quite good too? Now my mouth is watering!

    Hugs to you my lovely.

    Marie x

  • Dreaming of fish and chips !!

    Jean xx

  • Jean guess what? So am I. What did I start? Maybe we can go there and have those fish and chips one day?

    Marie x

  • The home has been hugely helpful with my parents CHC reviews but my brother and I always liked to be there so we knew what was going on. Melanie will fight for you if she doesn't think their assessment is right. Good luck. Xx

  • Thanks Vron, how are you and john? X

  • Not good. John has got an enlarged prostate and 3 weeks ago went into A&E. he was fitted with a catheter and sent home. Next day he had raging fever and blood in his urine and was admitted. Ward sent him home two days later without referrals so left on my own to cope for 12 days. He should have had a TWOC on the ward but didn't. Don't worry the formal complaint letter is on its way! His speech is nearly incomprehensible and mobility much worse. He is going into wray common today for 5 nights respite so I can get some sleep and try to relax! Hospital bed coming next week so all change here. Desperately sad I think it's only just hitting me that I'm losing him. Xxx

  • Aww Vron, I'm so so sorry! It's all so bloody unfair!! I'll be with Dad this afternoon so perhaps I might see you and john there......huge hugs x

  • He's going on this morning as I have memorial service for close friend this afternoon. He had MND so not a good few weeks! Xx

  • πŸ˜₯ bless you darling, take care x

  • Vron

    So sad for you and your husband. God bless you both. This thing is so damn cruel.

    Marie x

  • Thank you. Xx

  • I know that he is being cared for but you need to be checking in on them so that your Dad is being cared for the way you want him cared for because you are his voice.

    I am not trying to be pushy but I just remember how my mother in law had been cared for, these nursing homes need to know that someone is physically there. Not every day but every once in awhile. Because I know you have your own life to live, that's one of the reasons he's in a nursing home.

  • Ooh maybe I wrote this wrong we visit minimum of every other day!! We couldn't and wouldn't dream of not visiting, omg doesn't bear thinking about!! X

  • Hi

    Be there!

    Our first review was just informal and looking at what had worsened.

    With the financial restraints in the NHS i am preparing for a different experience in Oct.

    Yes they can remove funding , bizarrely as they worsen, if they are bedbound there is no risk of falling in their criteria! Peg they argue risk of choking nil!

    Julie

  • We will definitely now be there, thanks Julie! I had just thought maybe it could hinder the process....but I've always fought tooth and nail and wasn't really red to stop, hence the post! It's all a bloody joke in my opinion, a horrid illness that is progressive and terminal with only one outcome!! Simply wrong!! X

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