Funding - any one know anything about Continuing Care Funding?

Discussion in 'ARCHIVE FORUM: Support discussions' started by JANE1962, Apr 2, 2009.

  1. JANE1962

    JANE1962 Registered User

    Apr 1, 2009
    I have started the process of choosing a nursing home for my mum today - I never thought this time would come but here we are. And of course I have to think about the financial implications. Presently she has sufficient savings and will probably have to fund her own placement for a time but it strikes me that she has a life-limiting, unpredictable organic disease and should be the responsibility of the NHS. So I've given the Social Worker a bit of a turn by asking for an assessment for Continuing Care Funding. I don't think he knows where to start and I have rung various other professionals involved but they are all very vague about the process and negative about the chance of getting such funding for someone with dementia. Has anyone any experience of this which you would be willing to share? I would love to hear from you. It's awful to admit but I just feel like shaking the system up a bit - I can't make my mum better but maybe I can get the best of care and funding for her.

    Looking forward to your thoughts, Jane

  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Is your mother in Scotland? If so the rules are I believe slightly different than in England. I understand from members who are in Scotland that it is very difficult to obtain NHS CC funding up there, (which doesn't of course mean you shouldn't try). This is the information

    If it turns out she's not in Scotland we may be able to give you further advice.
  3. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    NHS Continuing Care Application

    Hello Jane

    I approached our SW in Nov 2007 re NHS continuiing care for Dad. This was after I had found out that mental health was to be "taken into account" to a greater degree for this. I think this was after an amendment to the mental health act - prior to that continuing care applications were based more on the physical nursing needs.

    Our SW introduced me to a colleague who had greater knowledge in this area and she was excellent. She suggested that in order to prove that Dad met the criteria (i.e tick the right boxes) we concentrate on 4 key areas:-

    & unpredictability

    of Dad's illness and his medical and care "needs".

    We were successful with our application, but I would add that we are now over 16 years down the line with AZ and although I'm obviously very grateful that our application was successful I'm also very sad that Dad's needs are now so "complex" - that we do qualify (if that makes any sort of sense!)

    I wish you luck with the application. Feel free to PM me and if I can be of any further help will cetainly try.

    Take care


    Gill x
  4. JANE1962

    JANE1962 Registered User

    Apr 1, 2009
    Thank you for the link Jennifer - funnily enough I had tracked the same document down and emailed it to the social worker earlier today.

    Yes - we are in Scotland though only because my husband is working up here - we still have permanent homes in Shropshire and are likely to return by January next at the latest. It's made our situation very complicated in lots of ways but the fact is my mums needs are outstripping my ability to cope now and I guess that means I must go through the Scottish system at this point.


  5. Tiz

    Tiz Registered User

    Feb 6, 2009
    SW England
    Hi Jane, Hi, Jennifer.
    We are at this stage too, and are also coming up against walls. Our CMN was at first quite optimistic but then ( probably having received a talking-to from those higher up ) appeared to be back-peddling. My mother has other health problems which I feel are not being properly monitored (multi-disciplinary :eek: ) and this leads to severely compounded problems with behaviour, compliance, and numerous crises eg oedema, rashes,incontinence, fainting and falls. Up until now my brother and I ( 24 hr basis) have cared for Mum but things are now becoming increasingly difficult. People are making references to bringing in Social services but to us "4 scheduled visits a day" are not an option........:mad:
    We have asked the GP and are waiting for his reaction but I suppose if he recommends full funding it is as tho' he is "admitting defeat" ! We have discussed Mum's condition with a nurse in the Dementia unit of the home we would like Mum to go to ( we are willing to top-up) who says that she has patients with similar symptoms who receive full nursing care.
    According to the guide-lines for full NHS funding Mum appears to be "priority" in at least 5 domains.
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I'd be thinking it is not the GP who is relevant here - it is the consultant who made the diagnosis.

    In my experience, while a GP may attend a multidisciplinary assessment, it is the consultant who is the key doctor involved.
  7. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Whilst I have read alot about who should be eligible for CC and in what circumstances, the most frustrating thing for us has been trying to get to grips with the procedure i.e. the initial screening and the full assessment. Now if I were a cynic I would say that the powers that be make it deliberately confusing. ;)

    I found this information a good starting point.
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    #8 Margarita, Apr 3, 2009
    Last edited: Apr 3, 2009

    My Social worker told me, its all dealt with by 2 expert in Continuing health Care that work at our Local Primary Care Trust.

    So in England its Primary Care Trust that need to be informed you want to apply for it .
    Like in this link .

    For me personally, SW going to get in contact with them for me .

    They do the assessments on my mother, while getting reports from other health professionals that deal in my mother case.
  9. Sooe

    Sooe Registered User

    Nov 10, 2008
    Its a minefield

    Ughhh good luck with this, I will read with interest future threads to this, seems like its hard to get NHS CC even in extreme cases!!! Anyone with tips, ideas, suggestions which could be of help to all of us who will be having to research this in the future, the idea of facing panels etc scare me to death........but needs must so we will need to push on.

    Good luck with it all.
    Sooe xxxx
  10. mumof3

    mumof3 Registered User

    Feb 6, 2006
    Hello Jane

    I think the key fact is that that you and your mum are in Scotland. As far as we have been able to determine the assessment process for NHS continuing care is very much in the development stage. Jennifer has pinpointed the relevant legislation much of which mirrors the national framework in England. The difference is that there is no national decision-making tool although the legislation states that an additional assessment tool within the single shared assessment approachwill be developed and piloted. As far as our experience shows, this results in NHS Health Boards unfairly adopting very different approaches.

    My MIL is just 65 and has been on an organic dementia assessment ward of the local mental health hospital for 14 weeks. During this time and the preceeding couple of months in an EMI Nursing Home, she has been prescribed an almost unbelievable 4 different types of antipsychotic medication - amilsulpride, quetiapine, risperidone and now aripiprazole. Despite this my MIL is still verbally and physically aggressive, can be very agitated and distressed and is constantly pacing restlessly. Unfortunately, the consultant believes that my MIL has been at the severe stage for at least a year and her memory and cognitive abilities are almost non-existant. Communication is also very very limited. She has been on the latest medication for 3 weeks and unfortunately this does not appear to be having any calming effect to date. I should also mention that my MIL is also prescribed an antidepressent, diazepam and temazepam and night sedation so is tolerating a huge cocktail of drugs which we are concerned about. We have no doubt that she has been over-medicated and became doubly incontinent, lost the ability to eat independently and developed a significant stoop whilst taking risperidone. Thankfully, all the above have improved to a greater or lesser extent since stopping the risperidone.

    In spite of my MIL's lack of stability and continued challenging behaviour on the ward my husband and I are repeatedly asked (harrassed) by the staff how we are getting on in terms of identifying a new Nursing Home. In our NHS area there appears to be no process of assessment. We have asked for my MIL's health care needs to be assessed against the local criteria in line with the 2008 legislation and have been met with a brick wall. The consultant maintains that there is no such thing as cradle to grave care under the NHS and the Care Manager has stated that my MIL "owns her own house". Within the system as it stands our only recourse will be to appeal to the Director of Public Health of our Health Board when the consultant declares my MIL fit to be discharged.

    In my research I have come aross a report produced by ISD Scotland detailing numbers of Continuing Care patients by NHS Health Board and health specialty. Here is the link which may be of interest to you
  11. Clive

    Clive Registered User

    Nov 7, 2004
    Hi Jane

    My experience was that the assessment survey did not pick up obvious medical concerns (amongst other things double incontinence was one of the items missed from the assessment).

    So be prepared to make sure you see the documentation and have an in depth knowledge of all your mum’s medical concerns so you can correct the assessment if necessary.

    We won eventually.

    Best wishes.

  12. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    The Panel


    Just to reassure Sooe (and maybe others) we did not have to "face the panel" ourselves - in fact I'm not even sure if our SW had to be present.

    Certainly all the paperwork had to be presented to the panel (they apparently meet once a month in our area). They then "consider the application" - which consisted of written reports from me (as Dad's main carer) and from all the professional healthcare workers involved in Dad's care.

    From memory this was:-

    CPN (now mental health nurse)
    District Nurse
    Social Worker

    It's a lot of paperwork and as you can imagine took some time to get all the relevant reports co-ordinated, but as previously stated our SW was brilliant and brought it all together and submitted it on our behalf.

    Hope this may reassure those who are considering going down this route.


    Gill x
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
  14. JANE1962

    JANE1962 Registered User

    Apr 1, 2009
    This one could run and run!

    Hello Jennifer, Gill, Tiz, Brucie, Sue, Margarita, Sooe, Mumof3, and Clive

    Wow - thank you all for responding - all your advice and info is really useful and I'm going to spend the next hour looking up the various links.

    Isn't it amazing how the powers that be are able to produce lovely glossy documents about all the wonderful services and resources available but when you come to want to access them you have to jump through hoops whilst blindfolded.

    Love to you all for giving your time to think about this problem -
    Jane xx

  15. netsmurfit

    netsmurfit Account Closed

    Mar 24, 2009
    #15 netsmurfit, Apr 3, 2009
    Last edited: Apr 3, 2009
    hi jane

    Hopefuly this document may give you The guidence you need Also any one else starting out on the Fully funded C/C aplication


  16. mumof3

    mumof3 Registered User

    Feb 6, 2006
    #16 mumof3, Apr 4, 2009
    Last edited: Apr 5, 2009
    Hello again Jane

    Just to add to your reading matter, here is a very useful document from Age Concern which again relates specifically to Scotland Just click on pink factsheet 37 link. I think lots of the information you have been given relates to England and although much of the national guidelines/legislation is similar I do feel it is very important to understand the differences and the lack of any standardised assessment tool in Scotland at present. This obviously results in NHS Health Boards developing local systems - or not doing anything as appears to be the case with our Health Board. Trawling the net I did come across a set of local eligibility criteria for NHS Continuing Care for NHS Lothian which includes patients with dementia. Here is the link. The relevant pages are from number 40 onward. It is 10 years old however it does at least make an effort to document the dementia stage and associated behaviours for which funding would be granted.

    We are just at the beginning of our battle with our Health Board and so far have been frustrated by the apparent lack of knowledge among the so-called professionals. It is one thing to appeal against a set of guidelines or standards, it is quite another to have those responsible deny there are procedures or guidelines in the first place. If I can be of any further help I am happy for you to PM me.
  17. SilverStar

    SilverStar Registered User

    Apr 8, 2009
    I may be able to help with this as my mother is in a nursing home and although she doesn't have Alzheimers the application process for continuing care funding is the same.

    You need to print out a copy of the National Framework for NHS Continuing Healthcare from this link

    In a nutshell, you tell the hospital you want to apply for continuing care funding (in England not sure about other countries). The hospital then has to carry out an assessment of your relative's needs.

    The family or patient then has the chance for input and to comment on the report. It will then be decided whether or not your relative can be funded.

    In most cases funding is refused HOWEVER THERE IS AN APPEAL PROCESS and while the appeal to the PCT and then the SHA is going on the guidelines say that the PCT MUST continue funding.

    This is an arduous and pretty unpleasant process but I have kept it going now for more than two years and we are still within the appeal process and as a result haven't paid a penny in nursing home fees.

    There are specialist solicitors who can also give you an overview of your relative's case, I won't recommend any but I have used one and it was the best £700 I have ever spent, just to give me some pointers about what the PCT should be doing and to confirm I was on the right path.

    Hope that helps.
  18. Trying my best

    Trying my best Registered User

    Dec 9, 2008
    I have an appointment with the powers that be for a continuing care assessment for my mum next week - yikes! :eek:

    I have been doing a bit of research and found a page on the Department of Health website which relates to the national framework and has a 'checklist' and 'support tool' that I am assuming will at least partly infomr the assessment:

    I understand that different PCTs also have their own rules but I believe that they all have to follow this as well so I am hoping that this is a good place to start...

    In our case, we were very lucky in that mum's consultant has always been very supportive and actually suggested the assessment following a period of emergency respite. That got the social worker and everyone else moving quite promptly!
  19. Bob S

    Bob S Registered User

    Mar 24, 2009
    Welwyn Garden City
    The introduction of the National Framework should have done away with PCT's using their own rules, but I have no doubt that PCT's are still using their own intepretation of the National Framework, and in some cases it wouldn't surprise me if they still use their old criterias and make them "fit" the National Framework.
  20. JANE1962

    JANE1962 Registered User

    Apr 1, 2009
    #20 JANE1962, Apr 16, 2009
    Last edited by a moderator: Apr 16, 2009
    Tomorrows going to be a big day!

    After a lot of soul searching I have finally found a bed in an EMI unit in Shropshire. My mum is Shropshire born and bred - as am I - and so in spite of the fact that I am living temporarily in the Highlands (and she has been with me)I have decided that she needs to be where she belongs. We anticipate returning to Shropshire within the next few months so I saw no point in fighting my way through the Scottish system and settling her somewhere that she would probably not stay for very long.

    So tomorrow at 2.00pm I will hand over responsibility to (name removed)- a brand new establishment so I am having to trust my instincts that they will take good care of my precious mother. The company who own it have other homes in the area who have good CSCI reports so I'm as confident as I can be that I've made the right decision.

    The Nurse Manager has agreed to start the process for Continuing Care Funding in a couple of weeks to give them time to get to know her and so be able to offer a meaningful assessment of the needs they observe. On initial impressions she felt my mum would be borderline but having read everything I can from all the links you have all shared and from my own research I think we have a good case to argue.

    I will update as we go through the process.

    Please wish me luck for tomorrow - I'm feeling pretty rubbish about abandoning my mum :( but know that the time has come to let go - and my lovely husband has promised we will come home for long weekends once a month so that I can spend time with her :eek:.

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