The Health Minister asserts that people with AD are entitled…

Clive

Registered User
Nov 7, 2004
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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
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
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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.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
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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.
 

Clive

Registered User
Nov 7, 2004
716
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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.
 

noelphobic

Registered User
Feb 24, 2006
3,452
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Liverpool
Clive said:
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.

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
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
0
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
 

Skye

Registered User
Aug 29, 2006
17,000
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SW Scotland
Grannie G said:
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

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.
 

daughter

Registered User
Mar 16, 2005
824
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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!
 

EllieS

Registered User
Aug 23, 2005
170
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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
 

Clive

Registered User
Nov 7, 2004
716
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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/
 
Last edited:

Amy

Registered User
Jan 4, 2006
3,454
0
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
 

chip

Registered User
Jul 19, 2005
400
0
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
 

noelphobic

Registered User
Feb 24, 2006
3,452
0
Liverpool
Clive said:
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/

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
 

Skye

Registered User
Aug 29, 2006
17,000
0
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.
 

Clive

Registered User
Nov 7, 2004
716
0
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.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
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
 

Clive

Registered User
Nov 7, 2004
716
0
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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