1. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Does anyone have any advice or experience of CHC funding for Alzheimers sufferers please? My dad is in final stage & was admitted to hospital 6 weeks ago following a fall - nothing broken but severely dehtdrated. He deteriorated quite quickly, stopped eating and drinking and was put on a drip to maintain fluids. 3 weeks ago we were told that they were withdrawing the drip and just going to keep him comfortable but that we should expect that the end was near. He is still with us and some days takes small amounts of food and thickened drinks. He is totally bed bound & catheterised. This week we worked through the checklist with the team to discuss discharge to a nursing home. He scored 5A, 4Bs and 2C's so goes forward for full CHC assessment supposedly next week. I have read that getting funding for Alzheimers is difficult so would appreciate any advice on what I should be prepared for. I feel they may be taking time arranging next meeting as dad may slip away from us any day. Thank you
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    19,233
    Male
    North Manchester
    Sorry to hear about your dad.

    "...3 weeks ago we were told that they were withdrawing the drip and just going to keep him comfortable but that we should expect that the end was near...
    ...This week we worked through the checklist with the team to discuss discharge to a nursing home..."


    Forget about the normal tool and scores.
    Ask for Fast Track

    The individual fulfils the following criterion:
    He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required.


    https://www.gov.uk/government/uploa...le/213140/NHS-CHC-Fast-Track-Pathway-tool.pdf

    All it needs is a doctor's signature.
     
  3. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Thanks Nitram I will look at that. Fast Track was mentioned when the drip was first withdrawn but nothing happened. It was also mentioned between the staff at our meeting on Tuesday but SS said he'd picked up so not eligible as its hard to determine a timeframe. At the time I just accepted that but will now wade through this document to see if theres anything that may help. Thank you again for your insight
     
  4. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    The care my dad is receiving has changed significantly in the last few days and I am assuming it is to make him appear more able before the funding meeting on Tuesday. For almost 4 weeks he has been bed bound and dressed in hospital gowns even though his own PJs were there. Yesterday he was taken out of bed to his bedside chair and dressed in his own PJs. i was told when i arrived that he had eaten all his lunch. When supper arrived I tried to feed him but after a mouthful he went back to sleep and refused any more. A few minutes later a nurse came to say she would feed him (they have never done this before) She was literally forcing food into his mouth and yes he did swallow it but it was very uncomfortable to watch. I am sure it was just so she could tick his food chart that he'd eaten 3/4 of his main and all dessert Do I just accept that this is what they do? I know how much dad shouts when anyone even touches him (except me- which is odd as I dont think he knows me anymore) so imagine he was very distressed being dressed and moved.
     
  5. katie1

    katie1 Registered User

    Aug 5, 2014
    122
    Kendal Cumbria
    any chance you can go in to the ward more often and not at visit times? you might get a better picture then of what happens....he's in hospital, not prison--he's your Dad and you are concerned, so just turn up. Thats what Ive decided to do! if they seem to be "forcing him" question it
    "What are you doing?
    I think he is struggling when you are doing that
    Is that necessary?
    Has he been assessed for that procedure?" etc etc
    Ask them why does he shout, are they noting down when and why this happens.....sometimes its worth just asking questions and even writing things down!
    Nevertheless he is very dependent on someone for all his needs.
     
  6. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Yes I do go in at odd times but havent been early enough to see how he reacts to being moved or dressed (though another patient who I chat to quite often when dad is sleeping was concerned at the distress dad is obviously in - he actually called me over to talk about it). The very officious nurse who was feeding last night just said in a friendly, jovial manner 'oh he needs its. He's ok Arent you Ian' obviously dad didnt reply as he didnt understand the question. Thank you for your suggestions - I need to be more forthright. To be honest I love just sitting quietly holding his hand & Im so exhausted I didnt want a fight. Im prepared to fight in the DST meeting but Ive resisted on the ward up to now but I need to question more. Thanks for helping me realise that x
     
  7. nitram

    nitram Registered User

    Apr 6, 2011
    19,233
    Male
    North Manchester
    If he is discharged to a nursing home without CHC there is nothing to stop the GP signing a Fast Track, will it be his normal GP or a different one?
     
  8. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    If we get our home of choice he will keep his current GP. I was so prepared to lose my dad 4 weeks ago when he refused food, drink and medication and the doctors said he would drift away with them keeping him comfortable and dignified. Somewhere this decision has changed and I need to find out how, when & why as he is being force fed and given injections despite refusing them. It is so distressing as much as I dont want to lose him it would be the best thing for him. Now he is feeding again it seems the painful, slow decline will continue.
     
  9. asherman

    asherman Account on hold

    Oct 9, 2011
    8
    Milton Keynes
    That sounds very distressing for you, Angel Eyes, and of course for your dad too. I have had experience of many, many Continuing Healthcare (CHC) cases, and I never cease to be shocked at what some health and social care people seem willing to do to give the impression of a lesser degree of need. I'm not saying that's definitely what's happening in your case, but it does seem rather 'convenient' that hospital staff are insisting he's eating/forcing him to eat, etc etc.

    Keep in mind that specific diagnoses are irrelevant when it comes to CHC eligibility; it doesn't matter what diagnosis a person may have - Alzheimer's, Parkinson's, COPD, arthritis, or anything else for that matter - what counts are the day to day care needs that arise as a result, regardless of any diagnosis. So don't believe anyone who tells you that CHC is not for people with Alzheimer's or dementia. Such a statement is wholly misleading.

    Also, as nitram says, the Fast Track may still be appropriate and a GP can sign this, as can any other health or social care professional with knowledge of the process. I hope that helps. Remember that, just because your dad has picked up a bit (if indeed he has), doesn't necessarily mean he's no longer suitable for the Fast Track process.

    I wish you well. I imagine it's a very difficult time right now.
     
  10. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    Thanks asherman. I was told yesterday that he was no longer under palliative care team so assume that rules out Fast Track in that it is no longer considered he is close to end of life. As we all know its hard to determine how long end stage will be in each case. Ive gone through the Decision Support Tool that will be discussed tomorrow and fear that the medical needs - breathing, skin, ASC etc come out at low/no need and that they will say feeding, mobility etc are social not medical needs. I understand this means the best we can expect is about £100pw towards nursing home fees from Social Services rather than full NHS funding Overall he should score 1 severe for cognition, 4 high and 2 moderate (in my opinion!) I spoke to the ward sister yesterday about the force feeding issue and she was as appalled as I was. This has been reported to Matron (yes we are fortunate to have one!) and recorded in Dads notes
     

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