1. Expert Q&A: Living well as a carer - Weds 28 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 Wednesday 28 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.

Top up on Fast Track CHC

Discussion in 'Middle - later stages of dementia' started by ANITRAM, Jul 18, 2019.


    ANITRAM Registered User

    Feb 2, 2019
    I feel really terrible asking about the financial aspects of my MILs care at this stage but following a discussion with someone from the health case management team ( whoever they are ) I was told that she has been approved for fasttrack CHC but the family must pay a top up of her fees ( with CHC ) because she is living in a care home that charges above LA rates . I was told she had made “ a lifestyle choice “ to live in this expensive CH and therefore must pay the difference between LA rate and the CH rate . She did not make a choice to get dementia or a choice for this CH . It was the ONLY home that would take her at Christmas in an emergency. A cheaper home that assessed her in the new year refused to take her . Am I right in thinking top ups are not permitted with CHC whatever the cost of the CH ?
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I've had this discussion with a social worker because I wanted my wife in one of the 3 homes within walking distance of where I live and as the LA were funding, she said impossible without a top up and in one case that would have been over £1,000 per week.
    The argument is that if everyone in Salford gets £X pw for their care what makes you special and entitles you to more than anyone else?
    When I explained that a home nearby would mean family and friends could visit more often and you do have a right to "family life" under the Human Rights Act she just dismissed it completely.
    Her argument was that everyone gets the same and if I wanted more then my sense of entitlement to a home in this area was just "rich privilege".
    I'd call their bluff and ask which home they'd move your MIL to as if she's going to be difficult to place it may be she has to stay where she is because they can't find anywhere to take her, in which case they will have to pay the cost without a top up, like it or not, however, if they find somewhere that can met her needs for less and you reject it then it is a "lifestyle choice" to be in an expensive home and why should you get more than everyone else.
    CHC is the right to have your care paid for by the NHS but it's not a blank cheque to have those needs both met and exceeded.
    In the first instance refuse to pay the top up and they'll have to pick up the tab until they can find an alternative, that could take a while if it's even possible, but when they do if you don't like the place or it's out of the area then other than the right to family life argument or the alternative home can't meet her needs then you are making a "lifestyle choice".
    I'd be really hacked off if I found out people were getting a higher level of funding than my wife for any reason other than they had greater needs not greater expectations.
    Not very positive I know but that's the angle the CHC will be coming from.
  3. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester

    180. NHS care is free at the point of delivery. The funding provided by CCGs in NHS Continuing Healthcare packages should be sufficient to meet the needs identified in the care plan. Therefore it is not permissible for individuals to be asked to make any payments towards meeting their assessed needs.


    Is it possible to pay top-up fees for NHS continuing healthcare?

    No, it isn't possible to top up NHS continuing healthcare packages, like you can with local authority care packages.

    The only way that NHS continuing healthcare packages can be topped up privately is if you pay for additional private services on top of the services you're assessed as needing from the NHS. These private services should be provided by different staff and preferably in a different setting.


    Creative accounting is being used to permit top ups, the LA has to source a suitable placement at whatever the cost to them, however it need not be local, it may be some distance away.
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    But is it "creative accounting"? If everyone went for a top flight, first class, all singing, all dancing care home then their assets would run out much quicker but you then could use the fact that they're already there as a reason that they have to be allowed to stay there, we'd all be doing it.
    It's a bit like sending your children to public school then when the money runs out expecting the LA to pay to keep them there, they won't you'll get offered a place in the local comprehensive/high school or whatever they're called these days.
    In the first post Anitram describes the home as being "expensive" so should the state pay more because that's what you're used to and give less to people with lower expectations.
    Provided (as in your quote) the state meets the "assessed needs" the state need pay no more, if you want more than that it's up to you that is a lifestyle choice the state has discharged its liability to find a place and no top up is required.
    I hope the CHC find there is no choice and have to leave MIL where she is now and if we're talking fast track CHC that's probably what will happen (I hope) so as I said before refuse to pay the top up and see if they can even find an alternative, hopefully they won't and they'll just have to get their hands a bit deeper in their pockets and fund where she is now.

    ANITRAM Registered User

    Feb 2, 2019
    Thank you for the advice . I spoke to the case management team and asked them if they were looking for a place for my MIL that was within the LA CHC budget that would meet her needs so that I could make a "lifestyle choice " to stay and pay the top up . I was playing devils advocate of course as @Kevinl advised ! I was told they would come back to me after the weekend . Well they won't need to bother as she has taken another significant downturn overnight and will not survive till Monday . She did not make any choice about this CH ( although it has been fantastic and I have no complaints ) and I am still offended that anyone can think she made this "lifestyle choice" and even in the final days of her life she is being asked to pay for her care just because she has a dementia diagnosis and not some other illness . Dementia is so cruel but she will be free of the torment very soon .
  6. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    My mum was in a CH part funding and rest LA with me topping up , after two years she was deemed EOL and palliative care team fast tracked her with full CHC funding to a NH . Her first 3 month review has just been done and she scored 1 severe 3 high 2 moderate 2 low and 3 no needs . In my mind she hasn’t improved , all that has happened is she has survived longer than they thought and subsequently they are withdrawing full CHC and offering FNC with LA meeting the rest . I do not want to move her I’ve done it three months ago and is was traumatic to say the least she’s 87 and bedridden , frail etc . I am waiting now for assessment and possible list of alternative NH , however I am going to refuse to allow her to be moved and if they insist ( it will break my heart ) I am going to walk away until they have sorted it all out . I cannot put her through the trauma again I only moved her on there recommendation last time . I also have no intention of paying top up . We had a lovely CH and everything was in place and working well then they say oooh best move mum she’s got days / weeks left she needs NH care . 3 months on she’s hanging on to life and now this mess is thrown at us again . I’m so cross it’s sad that her only crime is to have survived ❤️ Any one else been here if so advice appreciated.

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