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NHS continuing care for dementia

hopeful56

Registered User
Jun 17, 2009
265
Midlands
Thanks, but I wasn't expecting you to offer any guidance, I was merely using my mum's example to illustrate that Jennifer is right in saying that the PCT/CCG CAN implement the new framework but does not HAVE TO. You will see in my earlier posting that mum is currently funding her own carers, but they are apparently too expensive for the PCT to fund, even though we only want a couple of hours a day and they must realise it would cost upwards of £1000 to put her in a nursing home!

They told us that Personal Health Budgets will not be available in her care until 2014, even though they already have the facility to offer her one, albeit not under the pilot scheme. I think this clearly demonstrates that the PCT is likely to drag its feet and not implement the revised NF until it has to.

CAN does not mean MUST or even SHOULD.
 

Terry big

Registered User
Jan 24, 2011
13
Hayfield in the High Peak
Hi Jackie, I have a full care plan in place, I have been looking after my wife since 2002
There is not a lot left of the woman that I married in 1980. My wife is now 62 and is now totally bed bond and incontinent all so blind.The only thing that as not been affected yet is her hearing. I have nursers that come in three times a day and I am allowed 12 hours a week to go out and get Food and things that we need. I have a sitter that covers for when I am out.I was having respite but I canceled that because it just was not working. I am told that the last thing to go will be her hearing. I also after liquidize all her food and feed her. I do not know how much longer this will go on.I was told last year to prepare my self for the worst. You will not find a lot of ads to help with this a lot of the things that I use,I have made and it just makes things a lot essayer.

I have just registered although my mum has had Alzheimer's
for at least 5 years if not longer.

Her deterioration is getting rapid after a fall 18 months ago which resulted in 2 broken hips and a broken wrist. She is now wheelchair bound and my dad is her main carer with the help of carers in the mornings and occasional respite sessions. She is self-funding at the moment but the money is rapidly running out. After she had a recent stint in hospital with e-coli, septacemia and urine infection my dad is finding it increasingly difficult to cope with all the care that she requires but the cost of bringing in more care is also stressing him out. So, I was wondering if anyone has had NHS continuing care agreed for dementia and the related problems associated with it. My mum had an assessment when she was discharged from hoispital last week which resulted in her needs being assessed as 'no care or limited care required', which I think is wrong. I am challenging this but wondered if I am wasting my time.

Thank you - Jackie
 
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NeverGiveUp

Registered User
May 17, 2011
1,035
May I just add to hopeful56 comment, can & may should be made to read must & should, the problem with open ended words is that situations can arise where 'if the face fits', this leads to potential for unfairness and inequality.

If those words were to appear in many documents a lot of these discussions wouldn't need to happen.
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
Hi Jackie, I have a full care plan in place, I have been looking after my wife since 2002
There is not a lot left of the woman that I married in 1980. My wife is now 62 and is now totally bed bond and incontinent all so blind.The only thing that as not been affected yet is her hearing. I have nursers that come in three times a day and I am allowed 12 hours a week to go out and get Food and things that we need. I have a sitter that covers for when I am out.I was having respite but I canceled that because it just was not working. I am told that the last thing to go will be her hearing. I also after liquidize all her food and feed her. I do not know how much longer this will go on.I was told last year to prepare my self for the worst. You will not find a lot of ads to help with this a lot of the things that I use,I have made and it just makes things a lot essayer.
So sorry to hear the suffering you and your wife are going through Terry. Dementia is the most cruel disease robbing not only the person but the family of the life they should have. My mum has had breast cancer but that was nothing compared to Alzheimer's. The only 'good' (if good can be the right word) is that the 'victim' is mostly unaware of what is happening to them. My mum says there is nothing wrong with her, it's the rest of us:) The more people that 'shout' about the effects of this disease the better and that's what I intend to do in any way I can. Take care and best wishes:)
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
Do I take it you are self-funding? If so, SS surely can't insist on a particular care home - you are free to choose as far as you can, i.e. depending on whether a home has a place and is willing to take someone.
At least that is what I have always understood.
If you are self funding you can choose wherever you want as long as they have places available. Don't let anyone tell you otherwise.
 

Epictetus1939

Registered User
Oct 22, 2010
5
Winchester
Just keep fighting

Granddad (94) was put in hospital by his private care home because they cant cope so he cant go back. 2 days later they said he is ready to be discharged. We said continuing NHS care please. He sailed through the checklist with our "help" and we are waiting for the DST meeting. We have insisted we see the completed DST form before we attend the meeting. We have gathered our own evidence from the GP and the care home and will submit out version of the DST form. We have found a lovely home which specializes in Dementia and they have taken CHC residents 5 last year. They charge £1200 per week for private and £1000 for CHC residents. If he does not qualify for CHC we will appeal. We have been advised they will not discharge him to a home of which we do not approve We have spend everyday for the last two weeks understanding the process and escalating people who do not agree to what we know is the law. We are now experts in the law, the many medical conditions Granddad has and the CHC process. We are going to win! Grandad may be dead by the time they agree but this is what he wants. We are deeply saddened that he has to be housed in such an inappropriate place (Hospital). Dont let your emotions get the better of you! At least you will know you fought your hardest. There is lots of help around.
 

NeverGiveUp

Registered User
May 17, 2011
1,035
As you go through the process, could you keep us updated please.

Not much help around in our area, your experiences would be useful.
 

Egeon

Registered User
Oct 12, 2012
98
Granddad (94) was put in hospital by his private care home because they cant cope so he cant go back. 2 days later they said he is ready to be discharged. We said continuing NHS care please. He sailed through the checklist with our "help" and we are waiting for the DST meeting. We have insisted we see the completed DST form before we attend the meeting. We have gathered our own evidence from the GP and the care home and will submit out version of the DST form. We have found a lovely home which specializes in Dementia and they have taken CHC residents 5 last year. They charge £1200 per week for private and £1000 for CHC residents. If he does not qualify for CHC we will appeal. We have been advised they will not discharge him to a home of which we do not approve We have spend everyday for the last two weeks understanding the process and escalating people who do not agree to what we know is the law. We are now experts in the law, the many medical conditions Granddad has and the CHC process. We are going to win! Grandad may be dead by the time they agree but this is what he wants. We are deeply saddened that he has to be housed in such an inappropriate place (Hospital). Dont let your emotions get the better of you! At least you will know you fought your hardest. There is lots of help around.
If you don't get CHC, then ask for a review straight away and as long as the NHS are paying i.e., in a hospital then they are responsible for ALL the care while the review process is ongoing. This is because the body that is funding the care at the time of the request is responsible