1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. DoTheRightThing

    DoTheRightThing Registered User

    Feb 21, 2012
    28
    #1 DoTheRightThing, Aug 3, 2015
    Last edited: Aug 3, 2015
    I wondered if anyone could give me some advice please. My grandmother is in a care home, she reached crisis point and, after a few abortive attempts, Social Services managed to 'persuade' her to stay there. Prior to that I had been trying for ages to get SS to see that she was vulnerable and at risk - she set fire to a piece of furniture at one point. The years leading up to crisis point were horrendous and she was manipulated and isolated for a while by a group of unrelated predators who insisted that they were her carers to SS when they were anything but. Thankfully, she is so paranoid about money that there were unable to get her to sign over Power of Attorney and last year I became her Property & Affairs Deputy and have since been improving her life as best I can.

    She has been very resistant to care of any sort, is very paranoid, makes threats that she will kill herself, kill others etc - but has so far not been physically aggressive although she is very verbally aggressive. She has absolutely no short-term memory, cannot remember any of her family at all or even the carers that she sees day-to-day. She is also blind in one eye and can barely hear. Her moods are very unstable and fluctuate from hour to hour and day to day, she quite often has to be sedated because she gets so distressed and she was on anti-psychotics for a while. She does not try to leave the care home but she wanders around the unit all day and all night, often not sleeping. She sundowns quite severely.

    She is considered a residential patient who is there of her own free will. The home has both residential and nursing care patients and my grandmother is in the locked dementia ward where there is at least one nurse on duty every day. Because of the way my Nan is she receives a lot of nursing care although, officially, she isn't charged for it so far.

    I am not too clued up on CHC funding but I read a couple of things on here the other day that suggested that if someone with dementia has certain behavioural problems then they might be eligible for CHC funding. Is that true please and can anyone point me in the right direction as to where I can find out? I am so busy firefighting the caring problems of looking after Nan that it can be difficult to keep up with everything else. She is self-funding.

    Thank you for any help given.
     
  2. katek

    katek Registered User

    Jan 19, 2015
    191
    #2 katek, Aug 3, 2015
    Last edited: Aug 3, 2015
    Hi

    The big question is whether her behavioural needs would be scored as 'Severe' or just 'High', and 2 'Severes' are required for CHC. Her other one would be in the 'Cognition' domain. If you are not already familiar with the Decision Support Tool (DST) which is used to help determine eligibility, you can download it by googling 'NHS CHC DST'. You should then 'score' your grandmother on it to get an idea of the level of her needs in the various domains, remembering that she would need 2 'Severes' to secure CHC. The CCG (the NHS funding body) are likely to argue that her behaviour is only 'High', but her unpredictability might help her case, especially if she has needs in other domains too - it does depend to some extent on how generous your particular CCG is. My father got CHC with 'Severe' in Cognition and Behaviour (plus some other needs) but he was also physically violent - 'risk' (to self and/or others) is a big factor, and there needs to be evidence of this.

    Anyway, if you decide to go ahead, the first step is that your grandmother would need to be assessed on the 'Checklist'. This is a sort of simplified DST used as a screening tool which you can also download. If your grandmother passes this, she can go on to the full assessment. You mention social services, so it would be worth contacting them and/or her GP to arrange for her to be assessed. Even if she does not qualify for full CHC (and you have the right to appeal anyway), she would probably get Funded Nursing Care - about £110 a week - which she is entitled to if she is receiving actual nursing care.

    I don't want to overload you with too much information at this point, but I don't know if you are familiar with the Pamela Coughlan judgement of 1999. There are numerous references to it on here, including a video link to a lecture by Luke Clements (a lawyer) on CHC. Briefly, Pamela Coughlan won her case against the NHS in the High Court when they tried to make her pay for her care after an accident left her paralysed The judge deemed her needs well within the responsibility of the NHS, although, ironically, if she were to be assessed now on the DST, she would not qualify! The NHS are supposed to abide by this judgement, but in practice they rarely do so (witness all the stories on this forum and many others).

    I am telling you all this because it is best to be forearmed before going into the assessment, (you have the right to be present on your grandmother's behalf), with the knowledge that the CCG are likely to be arguing against eligibility so you really need to be prepared to argue, with evidence, to the contrary! Good luck!
     
  3. Blogg

    Blogg Registered User

    Jul 24, 2014
    64
    I think it's worthwhile you trying and Kate's information is very concise in terms of the things that are relevant. You do say see is there of her own free will but if she's in a locked dementia unit, then she is ultimately being deprieved of her liberty (to leave) and as such I would imagine that the home will apply for a DOLS at some stage?

    The fact that she threatens to kill herself and others 'should' be seens as significant risk to herself and others and score her a severe on the behaviours. Everything must be documented, with out the evidence in the nursing notes, then you can not should the evidence to support her behaviours.

    http://https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213142/Decision-support-tool-for-NHS-continuing-healthcare.doc

    If you scroll down to the tables it will you the key words and phrases to use when preparing your own version of the checklist. This is what we did and did manage to secure CHC funding for my Dad.
     
  4. DoTheRightThing

    DoTheRightThing Registered User

    Feb 21, 2012
    28
    Thank you so much for such a detailed and helpful post, I really appreciate it. It seems I have a lot of reading to do. I find it quite odd that Nan is considered to be there voluntarily. In my opinion she is there because she cannot physically get out - doesn't understand how to get out of the doors etc - and because she is in a constant state of confusion about where she is and how she got there. She just cannot formulate an 'escape' attempt because of her impairment. She paces around night and day to such an extent that she has worn huge holes in her shoes and one of the reasons she was brought into the care system was that she was found wandering outside by her neighbours a few times. Recently her behaviour has deteriorated and she is due to see the doctor again as the carers are now keeping some sort of behaviour chart to assess her and provide evidence of her behaviour.

    I will look into things further, thank you again.
     
  5. DoTheRightThing

    DoTheRightThing Registered User

    Feb 21, 2012
    28
    Thank you so much for responding and for providing that link. I think I need to see what has been written in her medical notes and in the care home records. I'm really glad you managed to get CHC funding for your Dad. :)
     

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