1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    73
    #1 MissDiane, Jan 25, 2017
    Last edited: Jan 25, 2017
    Looking for advice on how to proceed with this please.

    CHC Checklist completed 4 weeks ago and scored 2 A's. Another assessment completed approx 6 weeks before this scored 3 A's. No further action was taken. No full assessment was done for either checklists??

    At the last assessment it was decided to move move from a Dementia home to an EMI as she now qualifed for nursing care due to her severe behaviour. I was informed they would then do the CHC assessment once she had settled into the new home.

    Assessment took place but second key professional who completed checklist was not invited so did not attend. Key professional has details/proof of all incidents which led to CHC checklist completion.

    Limited evidence available from new care home. Not all incidents documented. Admitted by staff at assessment. Staff said behaviours were same as those displayed in previous home, no change.

    Assessor decided to downgrade to High instead of Severe based on not enough examples! He didn't invite the key professional who had those examples. he ignored the care home nurse who said behaviours were still as bad as those listed in the checklist assessment. Assessor said he can only use written evidence not verbal evidence offered by a professional who worked in the new home. He had made his decision he said!

    They also tried to say we are more looking a the current position not so much the examples that led to completion of the checklist.

    Also tried to say that placement was wrong previously which means the past examples are not really relevant. But the behaviours are still exactly the same in the EMI home as they were in the dementia home. i don't think the environment has made any difference at all.

    Also unhappy with conduct of assessor but that's another story.

    After voicing my concerns to the CHC team i have now been given option of providing further information for panel to consider or having another assessment in 6 weeks but then the previous incidents would not count as they would be too old.

    Looking at putting in a complaint but wondering about how to go about gathering evidence etc ready for an appeal once we get a decision which i bet my house on will be a No!

    Obviously there are records out there with different people (care home, GP, consultant, etc etc but how do i get them. I asked previous care home for paperwork as i have LPA but they have not come back to me. I can see gathering evidence is going to be a stuggle. Do i send freedom of information requests offf? How do i do this correctly?

    The whole thing is such a mess.
     
  2. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    73
    Sorry not scored 'highs' meant to say A's
     
  3. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Have you looked through the CHC threads on this site? Maybe the questions you're asking will have been covered by other members?

    Sorry, I don't have any answers myself. All I can say is that you seem to have been given a raw deal.
     
  4. Angie1996

    Angie1996 Registered User

    May 15, 2016
    515
    Somerset
  5. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #5 lemonjuice, Jan 26, 2017
    Last edited: Jan 26, 2017
    I doubt it when people like my mother, not speaking at all, doubly incontinent,completely dependent for feeding, repositioning doesn't qualify.:confused:
     
  6. Moog

    Moog Registered User

    Jan 8, 2017
    73
    Kent. UK
    Interesting reading this. We have them coming to do the CHC assessment tomorrow.

    Mum is doubly incontinent
    . If she does use the loo she usually covers the floor by doing it as soon as her trousers are partially down. She can't make meals or drinks. Forgets to drink anything in front of her. Can't dress herself. Wanders from house. Talks to her dead mother or 'watches her on the garden'. The list is endless.

    I've asked the CHC if we, can do as much of the assessment without asking Mum questions as she'll say nothing or on a good day deny everything. Plus, she'll meltdown into tears (as last time) and wanted 'to die if I'm useless'.

    The SS Officer (ironically named) last time told our lovely Nurse Care Manager in the original eligibility chat that "it's all about budgets really." I'm a project manager by trade so I would say it's less about needs and more about budgets. Effectively they are too many needy (and deserving of help!!! ), elderly people to find funding.

    From what I've seen in my personal experiences with my mother (and with my project manager head on) funding elderly care doesn't yield anything useful to the country as the patients are more viewed as no longer able to contribute to society - can't work, can't breed, can't help the economy grow and won't get better. It's the unglamorous end of health care and is woefully under resourced. Often the best care comes from loved ones and underpaid carers on minimum wage who want to help old ill people live out their days in dignity and to show gratitude and respect for what they done in their lives before our generation was even conceived. Wish dementia care could attract the public imagination like Help for Heroes which is far more successful than they dared imagine it would be. (Personal knowledge as friends with a local co-ordinator). Unfortunately, dribbling, incontinent, teary old people is hard to market well to an audience that hasn't had experience of it. Sorry - end of sermon!!! When I see vulnerable people denied the good care they need I tend to hulk out..Grrrrrrr
     
  7. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    This may change as we see the 'baby-boomer generation move into old age and more people realise the devastating effects of dementia and stop seeing it as 'just a memory problem'.
    Your point about budget being the driving factor is however probably going to drive the issue and personally I fear for future sufferers, probably being left to 'cope in their own homes' simply because there isn't the finance to cope and many current Homes will have closed and there simply is nowhere to go.
     
  8. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,501
    Female
    Near Southampton
    They will always downgrade. Even multiple severe health problems apart from dementia, if you manage to obtain CHC funding, you are indeed fortunate.
    The NHS is in dire straits and the elderly and infirm are not flavour of the month, year or even decade, seeing as they are apparently responsible for this state of affairs. With care and nursing home closing down, this will make the dreaded 'bed- blocking' scenario even worse. I am elderly but not yet infirm - I dread the day I am!
     
  9. Moog

    Moog Registered User

    Jan 8, 2017
    73
    Kent. UK
    I agree - it's budget driven but still thought to be based on need alone. The local Admiral Team firmly believe that of the need is there budgets are irrelevant but I'm not convinced.

    I'm familiar with public-sector budgets on projects although not directly with health. I found often that money exists in the wrong 'pots' but can't be transferred across to where its needed. That's frustrating when you have to deliver a lesser product because of a surplus elsewhere that you can't access.

    I think elderly care will improve as we're effectively having our lives extended with new meds and techniques so we will need to address the outcome of this - make people live longer but we'll need to deal with the increasing number of ailments they will get.

    With science, we're effectively cheating evolution by artificially extending our lives but not dealing with the consequences.

    Having seen my parents at 83 with between them Parkinsonism, vascular dementia, incontinence, leg oedema, kidney failure, diabetes, I'd rather not replay that later in my life. They were two healthy people who never smoked seldom drank alcohol and didn't eat junk food.

    Personally, should I be lucky to live to 70-75 with reasonably good health, I'd be happy to bow out then rather than end up completely vulnerable and unable to look after myself. My folks still have insight and do hate the way their lives are now - they see very little enjoyment day-to-day having to rely on others for the simplest tasks, and where everything is hard to do.
     
  10. Moog

    Moog Registered User

    Jan 8, 2017
    73
    Kent. UK
    We found the social services officer was downgrading Mum's scores on the eligibility assessment. Luckily, the Nurse Care Manager stuck to her guns and made him upgrade them again on the spot. The Mum he scored wasn't anyone we recognised - his scores would indicate someone running their own home, cooking their own meals, with just a neighbour dropping off shopping once a week. If that was the case, we wouldn't have called them in anyway...
     
  11. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    158
    Bucks
    So I'm not the only one struggling to get this done!!! It's not nice to hear, the system is pants [emoji52]. People how have worked and paid in to NI & taxes for years and years are now told sorry but we have no money for you. Sell your house or ask the kids to pay! How can't this be right???[emoji35][emoji49] sorry rant over & my fight continues.....
    Mammamu [emoji202]


    Sent from my iPhone using Talking Point
     
  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    I think our generation, having seen what old age means for most, would agree with that statement.
    I certainly will be informing my Drs I don't want any flu jabs, pneumonia jabs or antibiotics, just to give a longer life with poor quality.
     
  13. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,630
    North West
  14. dottyd

    dottyd Registered User

    Jan 22, 2011
    1,066
    n.e.
    #14 dottyd, Jan 27, 2017
    Last edited by a moderator: Jan 27, 2017
    You must watch the prof Luke Clements video on social care
    Can't do the link but this will take you to the page and at the moment is the first one


    It takes an hour and it's broken down into 6 bite size chunks.
    Make notes on every section. Don't skip the background to this law because nothing has changed since 1946

    Once you've got your facts under your belt, then challenge everyone

    If this wasn't a dst meeting then you need one especially if your loved one has challenging, complex and unpredictable needs.

    Remember the mantra a
    Well managed need is still a need and use it at every opportunity.
    Good luck.
    Mum got hers and after paying £85,000 into the system managed to live rent free for the last 8 months of her life in a nh

    After three months you will have a review where they will try to downgrade her but just keep trotting out the mantra.

    It's such a wrong flawed system. Obviously if you've got nothing then you need to be taken care of but so wrong that they take everything but your last £23,000 . It's an absolute disgrace.
     

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