The Health Minister asserts that people with AD are entitled…

Discussion in 'ARCHIVE FORUM: Support discussions' started by Clive, Feb 21, 2007.

  1. Clive

    Clive Registered User

    Nov 7, 2004
    716
    I told my MP that my mother has Alzheimer’s disease and has had to sell her home to pay for the EMI residential home where she is being cared for. I suggested to my MP that the criteria for NHS Continuing Care has been written in a way that excludes those suffering from Alzheimer’s disease from “free” NHS care. In response my MP has sent me a copy of a letter he received from a Health Minister.

    The Minister’s letter reads:
    Mr Clive “is concerned that the eligibility criteria for NHS continuing care exclude people with Alzheimer’s disease. This is not the case. People with Alzheimer’s disease are as entitled to fully funded NHS continuing care as those with other conditions. I should stress that each application for this form of care is decided on its own merits, based on the clinical needs of the individual”.

    I wonder if my mum is just unlucky having to sell her house to pay for the EMI home?

    Are there any readers of this web site whose loved ones are suffering from Alzheimer’s disease (as opposed to those suffering from other illnesses in addition to Alzheimer’s disease) and ARE receiving free NHS Continuing Care like the Minister suggests?

    Does anyone have a loved one in an EMI residential home receiving any “Funded Nursing Care” from the NHS, which my MP says should reduce the EMI Home Bill.


    I really would appreciate some feed back.

    Thanks
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    My Mother died in 2002. She had lived in a Nursing Home for 6 years, on an EMI unit.

    Her house was sold when she went into the home, in order to fund her care. Social Services contributed towards the nursing home fees, on a sliding scale, according to her bank balance.

    There was another resident in her home, who had lived in rented accommodation.
    She received exactly the same treatment and care as my mother, but her only contribution was her State Pension.

    When my mother died, she had £12,000 left, in total, from the sale of her home and her savings.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Was it Christine Keeler or Mandy Rice Davies who at the height of the Profumo scandal said "well he would say that wouldn't he"?

    I'm afarid that's about what could be expected. Doesn't make it true though.
     
  4. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Lack of interest

    Thanks Grannnie G and jenniferpa for your replies.
    Do I take it from the lack of replies to this post that everyone now accepts that people with Alzheimer’s never receive NHS continuing health care.
     
  5. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I don't think everyone necessarily accepts that people with Alzheimers never receive continuing care. I think it is more a case that anyone who has researched it knows that it is unusual to get this without a long, protracted battle with no guarantee of success. It is a battle I have often thought about fighting but I have had other more pressing problems to deal with and I think that the same could probably be said for a lot of people. That's not to say that I will never do it and I would back anyone else who wanted to do it all the way.

    I think the only way to get the law changed would be for there to be some kind of 'class action' because, even when individuals do manage to win their cases, it doesn't set a legal precedent. Each case is still judged on its own merits and the outcome seems to depend on the judgement of the person making the decision.

    Brenda
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Dear Clive,

    When I was younger, I thought if I tried hard enough I could make things happen.

    I joined a political party, I went to meetings, I campaigned, I did as much as my free time and limited intelligence enabled me to.

    I had stong opinions, I went on courses, I was a Chair of Governors at our local school. I spoke up for the underdog when ever I could.

    I believed the strong should support the weak and still do.

    I have now reached the age of 65[nearly] knowing I haven`t made a scrap of difference. I am thoroughly disillusioned with the whole political system. I still have my beliefs and opinions, but have lost the will to fight, as out there in the political world, they are all on ego trips.

    I imagine a lot of people feel the same, and with the stresses and strains of caring, no longer have the strength.

    Love Sylvia x
     
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Another member is very active in this area. You may wish to look at this thread and sign his petition

    http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?p=58641#post58641
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Couldn't agree more, Sylvia. I'll fight all day ( and bring myself almost to breaking point) to make sure that John has the best care available, but as for fighting the system? I haven't the strength.
     
  9. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Clive, your original question was "Does anyone have a loved one in an EMI residential home receiving any “Funded Nursing Care” from the NHS."

    So I would think that the lack of replies would infer that no one on TP has a loved one in an EMI residential home receiving any “Funded Nursing Care” from the NHS, rather than an acceptance that this is how it should be.

    I do hope you get some uplifting replies but I'm not holding my breath!
     
  10. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Yes I Have Had Some Success With Continuing Care

    Dear All

    Mum is in EMI dementia unit @ a cost of £750 per week. She was previously in a residential home from which she absconded which lead to her having to be in an EMI residential home - not that I could find one with any vacancies!

    However, I have won retrospective continuing care costs for a period of 6 months while she was at the Residential Home (been fighting for this since 2004 and achieved end of last year). The day she left the residential care home and moved into the EMI care placement the PCT have adjudged her to no longer be eligible. It would seem that because CPNs and Doctors are not being called out to sort out problem times this goes against her - BUT she hasn't been allocated a Consultant OR a CPN since moving to this environment so they can't be called in can they. On at least 6 occasions, however I have been called in to calm her down and prevent her from hitting staff in pure frustration. My solicitor advised me to note the visitors book when this happened to help our continuing care case, but I have a feeling this has worked against Mum as since I did this I've not been called in - think the Home probably took the comment 'called-in' too personally and are perhaps protecting themselves - so I wish I hadn't made the entry!

    So I am still fighting because this is ridiculous.

    Good side: won about £11,000
    Down side: cost of solicitor about £9,500

    Now have to decide whether to go to Ombudsman (going over papers this weekend to try and make my mind up); am considering applying to Ombudsman without solicitor - apparently they can give you an opinion as to whether you have a case or not; have also noted previous reference point above on this thread; BUT I repeat what I've said so very many times before: Dad worked hard for his money and home (regardless of how much or how little) and I will battle to save as much as I can - because it's right.

    There's safety in numbers - maybe we should all get together and destroy the myths about continuing care by fighting for it en masse? - bit radical that sentence isn't it!!

    Anyway, if anybody can offer me any advice or if I can be of any help to ANYBODY at all please do get in touch.

    Simple fact with Mum is: she was told by Consultant that she was unsafe to herself and others to live independently, she was diagnosed with AD, recent Doctor's report says she's medium-severe dementia. I have no shame in stating that Mum is nothing like as badly affected by this disease as many of the kindly people that have contributed to my earlier thread on Continuing Care.

    Our parents paid their dues in more ways than one and they are treated like ---t!

    I'm gonna go and have a cup of tea and calm down - speak to you later.

    Ellie
    x
     
  11. Clive

    Clive Registered User

    Nov 7, 2004
    716
    #11 Clive, Feb 24, 2007
    Last edited: Feb 24, 2007
    Your little advert

    Hi Noelphobic

    Your little advert for the petition got our families 5 signitures put on it.

    Hope others read it and do the same as one day the weight of concern will move the MPs to action.

    Anyone reading this post please go and sign at this address:

    http://petitions.pm.gov.uk/Continuing-Care/
     
  12. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    As I see it to get continuing care, the person's health has to be unstable and require frequent nursing attention - so as I see it, had my dad allowed my mum to lie in bed all day, had he not struggled to get her up in the night and turn her, and she had developed bed sores - then we might have got more funding.
    The fact that a disease has attacked her brain leaving her totally dependant for all her needs, seems irrelevant!
    Helen
     
  13. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    i've just signed it. I so so hope it makes a difference and for once they will listen. They also have to be educated that younger people can get Dementia as well. Care is so hard to get as well to let the younger ones carry on working. I have had to book respite for two weekends to let me carry on as i cant get a carer due to it being 11hrs in one day. I am fightening the system as well as caring i check up on everything i have to. I find the system is worse than caring. Lets get this changed this is the time to do it elections soon
     
  14. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    It definitely wasn't an advert Clive! No advertising allowed on TP and for good reasons :eek: Just pointing out another thread that I thought was relevant and I thought you would be interested in.

    Brenda
     
  15. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Sadly I'm not convinced that a change of government would change anything. I could be wrong though.
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Sadly, I agree, Brenda. Even the opposition parties are avoiding the issue. I'm afraid dementia sufferers, whatever their age, do not carry sufficient clout. All we can do is keep hammering at the door.
     
  17. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Done - there's another one - who's next?

    Thanks Clive.

    Ellie
    x
     
  18. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Interesting comments

    Hi Noelphobic.

    I did not mean I thought you had put the link forward as a commercial advert. I was complementing you on your sophisticated thought process that linked my concerns with what another poster was writing in another thread. As a moderator you are reading far more threads than those of us who just have time to dip in. To cross fertilise the various threads by “advertising” is very valuable for us. Please keep doing it even if you call it something else.

    Thanks

    For those who only read the last post in the series the petition link I found to be valuable is:

    http://petitions.pm.gov.uk/Continuing-Care/


    And whilst I agree with you, Noelphobic, that a change of Government will probably make no difference I do agree with Chip that the best time to talk to MPs is when they are worried about being re-elected. Nothing party political in that statement.

    My original question was "Does anyone have a loved one in an EMI residential home receiving any “Funded Nursing Care” from the NHS." By this I mean has anyone had a reduction in their EMI Residential care bill from NHS funds, rather than from SS means testing.

    Ellies is so far the only person who has had success in obtaining NHS continuing health care and that needed a solicitor, and was short lived. Everyone else has either failed to make progress or is so tied down with caring that they feel unable to climb the wall of bureaucracy when common sense tells them that there is nothing available when the paper trail is completed.


    Whilst I am sure the Minister is not trying to mislead me when he writes “People with Alzheimer’s disease are as entitled to fully funded NHS continuing care as those with other conditions,” from what people are telling me in this thread he could just as honestly have written that People with bald heads are as entitled to fully funded NHS continuing care as those with other conditions.

    I do hope more people put their pennyworth into this thread. It means a lot to me as I now know I am not alone.
     
  19. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Part of the problem, I think, is that although we talk about the NHS as one entity, as far as I can see in fact these decisions are left up to the local trust to deal with. They are "supposed" to have criteria that is "supposed" to conform to policy, but each battle has to be lauched against a specific trust.

    Jennifer
     
  20. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Noelphobic

    Just picked up on another posting you made on 3 Feb in another thread where you said your mum was in middle band nursing care..

    May I ask is that because she is in a nursing home rather than a EMI residential home?
    And is the middle band nursing care for things other than Alzheimer’s?
    And does that reduce the bill from the Home?

    My own MP told me that many Homes had just taken the nursing care payment and kept the price the same and so I should check on what the home had done..
    When I asked at my mum’s EMI residential home they said that no one in the Home got nursing care and my mum was not even getting incontinency pads from the NHS (though the pads are now being provided).

    Thanks
     

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