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Thread: funding

  1. #1
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    funding

    Can anybody help me please, my dad is about to go into a care home. Why is it not going to be funded and why is my mum going to have to eventually sell her house and use up all her savings to keep him there. Why do we pay national insurance and whats the point of the NHS. Im totally baffled by it all
     

  2. #2
    Hi Tracey,

    Firstly, funding is not simple. It is based on savings amongst other things. First stop, I'd check this factsheet.

    http://www.alzheimers.org.uk/site/sc...documentID=125

    And also run a search on the forum as this issue has been raised many times.

    Your mother should not need to sell her house and can continue living there. This information should be within the factsheet. We only had to sell the family home to fund care when both mum and dad moved out the family home. I agree, it is unfair, particularly in England but we are all in the same boat.

    Also, you may want to look into NHS Continuing Care - again, run a search on the forum or the main alzheimers site.

    Hope others will post useful information to help guide you, but you may need to post more specific questions to get the right answers.

    Hope that helps
    Kind Regards
    Craig
     

  3. #3
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    Post Ref Funding

    Hello, I've just joined! We self-fund Mum in law from her pension & savings and have just undertaken a NHS Funded Care Review (CHC). The care home is managing her well and the thrust of the review was to determine current needs rather than risks associated with not managing them. I argued that (based on para 37 in the National Framework for NHS Continuing Heathcare& co ) "..The decision -making rationale should not marginalise a need because it is successfully managed; well managed needs are still needs.." But review does not look back more than a year (Mum's been in 2 years & went in because of setting fire to chip pans, getting lost etc). Has anyone any experience of this?
    Separately - I have an advert (Telegraph) "Banish Long Term Care charges" with a "money back" guarantee and an address in Rotherham. Anyone tried this?
     

  4. #4
    Hi and welcome to Talking Point.

    Firstly - I do not think the CHC review would look at the getting lost/chip pan incidents even if they happened last week. It's all about medical needs that need management rather than wandering etc.

    Secondly - I am very wary about anything that takes your money in this way. I would also not hesitate to say that there is no sure fire legal way to avoid paying for care in all circumstances. I wonder whether this company "cherry picks" customers who would not have many problems obtaining CHC anyway and rejects the more problematic ones.

    JMO
    Jennifer

    Volunteer moderator and former long distance carer.

    “A test of a people is how it behaves toward the old. It is easy to love children. Even tyrants and dictators make a point of being fond of children. But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture.”

    Abraham J. Heschel
     

  5. #5
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    paying for care fees

    Hello everyone,
    I have finally got round to registering on the site and following on the thread of car charges and assessments - just to fill you in my Mum was diagnosed with Alzheimers 3 and a half years ago, just before my Dad was diagnosed with terminal prostate cancer. Whilst caring for Dad at home in his last few months Mum was getting worse. On the day I was told my father had two weeks to live I rang social services to find out what support my Mum could have and was told not to bother them until she was dribbling, drooling and incontinent - literally those words.I followed this up by writing to every MP in Leicester (which included the then Minister for Health Patricia Hewitt) and every city councillor to get her included on to the community mental health programme in order for her to have some support. Eventually after many more phone calls this happened. When Dad died all the care for Mum suddently disappeared and since then every inch of the way we have had to fight to get her anything. All the things they offered her were so ignorantly inapproprate for someone with Alzheimers and they have, when I challenged them admitted that they have no specialist training for Alzheimer's care.
    Mum's short term memory is shot to pieces and we have just got Mum into a care home where she is kind of settling but again now we face the battle of who is going to pay. My conversation last week with a social worker included her admitting that if Mum had had a stroke she would have all her care paid for.
    Can anyone tell me where we are at with the PCT's and NHS taking responsibility and admitting that Alzheimer's is a disease, exactly like my Dad's cancer, and therfore it is unacceptable that people's life savings and houses have to be used to fund the appropriate care?
    The gov want to install memeroy clinics and give GP's extra training to recognise and diagnose the symptoms of dementia earlier? WHY???? What's the point of being diagnosed if there is no follow up care available and if you are in an area that doesn't fund Aripcept? Once again the gov is tackling it a**eupwards and not taking advice from the people who know what is needed ie us. Only when a senior poilitician actually goes through this situation will we have any real understanding from government. Rather like the AIDS virus in America back in the 80's - only when a congress man caught it from a prostitute did they then fund any care and research!
    Has anyone else had any success fighting the funding charges because I intend to take it on with my Mum's local authority and am fully prepared to go to any PCT hearing to represent her. My cousins won back over £30,000 in care charges for their Mum who has Lewy Bodies.
    I think that care charges and the extortion of people's hard earned savings should be at the top of the agenda along with more money for research. It's shameful that thousands of hardworking tax paying Alzheimer's sufferers have to fund their own care. I would love to hear any advice and I hope to keep posting with how I take on Leicester City SS and PCT.
    Apologies for the lengthy first posting
    best wishes
    espo99
     

  6. #6
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    Funding (cont.)

    Hello, ESPO99 and Jennifer.(see my message from yesterday for background)
    Local authority funding is means tested; if you are self funded make sure you get the lower of Local authority rates or your negotiated rate. We are now looking at NHS Continuing Healthcare funding. There is lots of info on the Department of Health website. What we are trying to ascertain is whether a disease (Dementia) that causes a person to be unable to look after herself is a medical reason to get continuing care or whether it's the symptoms that are key to this. The needs (in our case) are being met at the care home. Without that, Mum would surely be dead now. The illness lead her to wandering, falling, not eating enough (and what was eaten was usually old..), not taking her tablets, not keeping warm etc etc etc. We contend that these are "mental health needs that have arisen ... by illness" (quote from the definition of Contiuing Care in the June 2007 NHS document.
    We had a CHC review on Tuesday and the Nurse Assessor did not carry out a risk assessment. We have not recieved the result yet, but are not expecting a lot and are already are preparing an appeal!
    Anyone with experience of this process - your advice, please!
     

  7. #7
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    Quote Originally Posted by espo99 View Post
    Can anyone tell me where we are at with the PCT's and NHS taking responsibility and admitting that Alzheimer's is a disease, exactly like my Dad's cancer, and therfore it is unacceptable that people's life savings and houses have to be used to fund the appropriate care?
    espo99
    Hi espo99

    The NHS and Ombudsman and any civilised person knows that Alzheimer's and dementia generally are illnesses of the brain. The Pointon case was a bit of a turning point. The National Framework for Continuing Care explicitly has need 'domains' that cover behaviour, cognition etc. that apply to her, amongst other areas as well.

    A few initial questions for you:
    - Was any assessment done by the NHS?
    - Are you paying for her care?
    - Is it a nursing home or residential home?
    - Do you have access to her medical and care home records?
    - Do you have an EPA or LPA?

    Please let me know and I can advise next steps.

    Mark
     

  8. #8
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    Quote Originally Posted by PWhitton View Post
    What we are trying to ascertain is whether a disease (Dementia) that causes a person to be unable to look after herself is a medical reason to get continuing care or whether it's the symptoms that are key to this. The needs (in our case) are being met at the care home.
    Hi PWhitton

    As per my previous post - dementia is absolutely an 'illness' that could result in needs that are sufficient to eb eligible for Continuing Care. The NHS should have done (and you should have been involved in!) a full assessment based on the DST (Decision Support Tool) of the National Framework. If you could let me have more details (as per msg to espo99) then I can help further on next steps.

    Mark
     

  9. #9

    Exclamation Go back to your forum and stop upsetting ours?

    Mark
    If you bothered to look neither of these people have been online since the beginning of February- will you please as requested to others from your "fold" leave our forum alone- you and your other "sheep" have made your point as I have said MANY times on MANY different threads.
    Will you stop distracting people on here for whatever reason you are doing it?

    Many thanks in anticipation of the co-operation of you and the the rest of your "flock"?

    Julie
     

  10. #10
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    Julie

    Maybe these two users haven't logged on since then because no-one answered their questions? I'm simply trying to help those that are asking for some guidance in a situation where they appear at a loss what to do. Not sure why anyone would take offence at that.

    On the other hand, if you think what I wrote back to espo99 and PWhitton are inaccurate, please let me know.

    Mark
     

  11. #11
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    Moderator note:

    We do advise that members check the date on which posts were made. Occasionally members have responded to posts that were years old, enquiring about people who had since passed on, so it is a sensitive area.

    In this case, it does seem as if the posts in question were missed - with such a quantity of posts on the very active forum, that does happen.

    Julie, I appreciate that many of us are extremely sensitive after the recent incursion, and will remain so for a time. From my perspective, Mark is the most acceptable face of the otherwise intemperate group we have seen recently. Where he can offer an opinion that helps someone decide an element of care, then I think that is helpful. At present he may realise that, after the recent events, posting by anyone of the group, no matter how relevant, at present may be as welcome as a bailiff arriving at a wedding.

    What people from outside do not appreciate is the value we members place on Talking Point. Worrying about lost money is one thing, but TP has been literally a life or death matter for quite a few people. I personally - and the other moderators and majority of members - will fight tooth and nail to protect it, and the value it has for so many, now and in the future.

    The Alzheimer's Society, whose forum it is, stands behind and with us in this.

    Mark, I have no problem with most of your post. However, as a person giving their experience and opinion here, it is better if you leave the post open rather than saying "Please let me know and I can advise next steps". You are not the Continuing Care Advisory Service, here at any rate. Nobody is an expert here, except in their own experiences and while you can give your opinion as to what the next steps might be, the forum works best when a variety of views is given.

    If, having left it open, yours remains the sole reply, then nothing is lost.

    These are small, but important nuances, but they are very important.
    Bruce

    I'm still a Carer.

    "I don't suppose I'll see you much more. We had lovely times. I love you very much." Jan's words, October 2000

    "You'll take care of my daughter, won't you?" an ailing mother's words, 2013

    "I always thought you were thick" an ailing mother's words to me, 2013. How right you are….
     

  12. #12
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    Quote Originally Posted by Brucie View Post
    [COLOR="Blue"]Moderator note:

    Julie, I appreciate that many of us are extremely sensitive after the recent incursion, and will remain so for a time. From my perspective, Mark is the most acceptable face of the otherwise intemperate group we have seen recently. Where he can offer an opinion that helps someone decide an element of care, then I think that is helpful. At present he may realise that, after the recent events, posting by anyone of the group, no matter how relevant, at present may be as welcome as a bailiff arriving at a wedding.
    But of course that is just your opinion Brucie, and not that of the Alzheimers Society. You are obviously entitled to your opinions, no matter how wide of the mark they are.

    Quote Originally Posted by Brucie
    What people from outside do not appreciate is the value we members place on Talking Point. Worrying about lost money is one thing, but TP has been literally a life or death matter for quite a few people. I personally - and the other moderators and majority of members - will fight tooth and nail to protect it, and the value it has for so many, now and in the future.
    Our forum has also been a life or death matter too Brucie, but I guess you are too arrogant to see that. We fully understand that TP is the same, but sadly, some here have been very hostile towards us (including you, which as a moderator is very sad to see).

    Quote Originally Posted by Brucie
    The Alzheimer's Society, whose forum it is, stands behind and with us in this.
    Please could you advise us as to the individual or individuals within the Alzheiners Society who have stated this Brucie?

    Quote Originally Posted by Brucie
    Mark, I have no problem with most of your post. However, as a person giving their experience and opinion here, it is better if you leave the post open rather than saying "Please let me know and I can advise next steps". You are not the Continuing Care Advisory Service, here at any rate. Nobody is an expert here, except in their own experiences and while you can give your opinion as to what the next steps might be, the forum works best when a variety of views is given.
    I don't see what the problem is with Mark's approach Brucie. I have found him to be of great help in the past and he continues to carry on being of assistance.

    The problem with your comments is that people don't see them as your own personal opinion, but they see them as the official voice of TP, and that is misleading. You should be more careful about how you put across your own personal opinion, perhaps by stating something like "this is my own personal opinion and not that of the Alzheimers Society or the moderators of TP", or something to that effect.

    You have made it abundantly clear that you don't like the newer members who have joined recently, and that is a personal opinion that you are entitled to hold. But you shouldn't be putting it across in such a way that it is the official opinion of those who run this forum. That is very misleading.
    Last edited by Bob S; 26-03-2009 at 12:59 PM.
     

  13. #13
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    Good morning and how may we help you with your caring role for a family member?

    Do you need advice?
    Bruce

    I'm still a Carer.

    "I don't suppose I'll see you much more. We had lovely times. I love you very much." Jan's words, October 2000

    "You'll take care of my daughter, won't you?" an ailing mother's words, 2013

    "I always thought you were thick" an ailing mother's words to me, 2013. How right you are….
     

  14. #14
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    Incapable of providing an answer to legitimate questions Brucie?
     

  15. #15
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    Alzheimer's Society position

    Bob,

    The Alzheimer’s Society is totally supportive of the position of Brucie and the other Talking Point moderators, who are volunteers and in many cases full-time carers.

    It seems to me that your frustration is with Government policy and variable access to NHS Continuing Care. The Alzheimer’s Society has campaigned for many years to challenge the current unacceptable system of charging for care. This is one of the reasons why the Government will be publishing new proposals soon. We have also supported numerous individuals to challenge continuing care assessments. Our policy positions are formed by consulting our members who are mostly people with dementia and their carers. We do not support the view that no one should make any contribution towards the costs of care. That is not what our members think when we speak to them. You can visit the Society’s website and read the Dementia Tax report or our submission on the Green Paper consultation in England:

    http://www.alzheimers.org.uk/site/sc...109&fileID=411

    http://www.alzheimers.org.uk/site/sc...150&fileID=487

    More information on the Alzheimer’s Society campaign to radically change the system of charging for care to make it fairer for people with dementia can be found at:

    http://www.alzheimers.org.uk/site/sc...documentID=833

    Everyone affected by dementia is welcome on Talking Point and we know the forum is valued highly by its many users. One of the reasons it is held in such high esteem is that members are supportive and respectful of each other, and of the moderators who do so much to help so many. As an open forum we ask people to abide by the Talking Point rules, for the good of all members and guests. Moderators do remind users of the rules from time to time, and invoke sanctions when appropriate, and they do so with the full support of the Alzheimer’s Society.

    If users are unhappy with the Talking Point forum rules or they way they are implemented, then they are advised to submit their grievance through the Society’s normal complaints procedure, details of which can be found at:

    http://www.alzheimers.org.uk/site/sc...documentID=264

    There has been extensive discussion recently on Talking Point around NHS Continuing Care and about a separate forum used by some people who have specific concerns around this issue. I see no point in engaging in yet more discussion about this now. Suffice to say Talking Point is a place where people can express their opinions, and sometimes opinions differ. I have been clear about Society’s position on NHS Continuing Care, as have the moderators in earlier correspondence, and we will continue to reflect that on Talking Point.

    Andrew Proctor
    Head of Knowledge
    Alzheimer’s Society
     

 

 

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