NHS Continuing Care - a bit lost

[caplee]

Hi everybody,

I'm new to the forum and a bit taken aback at the overload of information available to me on the subjects I'm looking at.

My Grandfather was diagnosed with dementia several years ago but in the last 12 months we have seen a serious downturn . To that end he has been into a care home to have his abilities assessed for the past couple of weeks. Today (and I'm not fully sure of the full details as I'm living in Germany with my hubby who is in the Forces) my uncle, who is his power of attorney, has been told that he will not be allowed to return home due to his wellbeing.

There was no desire to put my Grandfather into a care home but now this is the only option we are being given. Having worked all his life and paid for his property he bought over 60 years ago and put away a few pennies for a rainy day I know if the family had opted to put him into a home he would have had to self fund. if the assessment centre are refusing to let him return home would this make him eligible for continuing care?

I really don't think it would humanely right that he wouldn't be allowed home, at the say so of the assessors, yet be charge £700 upwards a week for care and be forced to sell the family home to do so.

I know we are unable to get rid of his finances just to avoid fees but is it possible to pre pay for funerals from his money and if continuing care was rejected pay for lawyers to fight this?

Thanks in advance for any information - bit overwhelmed to say the least as this wasn't the decision we wanted!

Regards,

Caplee

 

[piedwarbler]

You can employ a lawyer on a contingency fee basis (no win, no fee) they take up to 30% in fees if they win the case.
You are allowed to cover funeral expenses - the Co-op have a pre paid package that you can pay for now and everything is covered apart from notices, limousines and flowers.
Hope this helps.
I'm sorry you are in this position. I've been a long distance carer and it's not easy.

 

[BeckyJan]

if the assessment centre are refusing to let him return home would this make him eligible for continuing care?

No such a refusal would not make him eligible. To qualify for CHC a sufferer needs to meet certain primary health needs. The National Framework is the basis on which this is assessed. If you google this you can download the document which is lengthy and complicated.

If a person does not qualify but they are not fit to be at home, then there is a financial assessment. If they have sufficient funds they are required to self fund and when it reaches a level (? around £23,500) then the LA will become liable for some of the cost and when it reaches around ? £12,500 they become totally responsible.

Returning to the original question - if you feel your Grandfather may qualify for CHC then further information can be given to you. Initially you should ask his medics and SW what their views are on this.

Best wishes

 

[BeckyJan]

Me again:
This link may help explain about 'paying for care'
http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=125

 

[caplee]

sorry, I should add for at least six months he has eaten only bran flakes twice a day and due to the pain he is experiencing in his tummy has resorted to (when nobody there to look after him, and he isn't embarrased to say so) putting a toothbrush up his back passage to relieve pain..

He doesn't know what pain is and tells us it would be better if he died!!! Can't help thinking this is a health need over a social need although I know the dementia is the cause of this 'not liking any food'

 

[caplee]

so if the assessment centre are refusing to release him back into his own home for his family to look after he can be FORCED to sell his property to pay for care? Madness eh?

 

[jenniferpa]

sorry, I should add for at least six months he has eaten only bran flakes twice a day and due to the pain he is experiencing in his tummy has resorted to (when nobody there to look after him, and he isn't embarrased to say so) putting a toothbrush up his back passage to relieve pain..

He doesn't know what pain is and tells us it would be better if he died!!! Can't help thinking this is a health need over a social need although I know the dementia is the cause of this 'not liking any food'

I'm afraid that this isn't uncommon. It's sometimes referred to as "manual evacuation" and more often involves the fingers, but it's part and parcel of dementia. I just wanted to let you know that you aren't alone in this.

 

[jenniferpa]

so if the assessment centre are refusing to release him back into his own home for his family to look after he can be FORCED to sell his property to pay for care? Madness eh?

Actually, I'm sorry to say this but: not necessarily. There sometimes comes a time where someone has to be protected from themselves. Now I'm not getting into whether the whole social care/health care issue is right, but one of the things you tend to learn with dementia is: choose your battles.

The first thing you need to determine is if they are right. Does he need residential care? Or could he be safe in his own home with additional support? They can't simply refuse to allow him to return home: they have to do assessments to be able to support this position. If you really want him home and he can be supported adequately and you are prepared to really push this issue, you may well be successful. But you have to be aware of the issues involved. Don't get wrapped up in: well if you are forcing this you should pay. What you need to do is say: what proof do you have that he is unsafe to return to his own home? There are quite strong protections for people to be allowed to make their own decisions, even if those decisions may not be the wisest ones.

Finally - how does your uncle feel about this? In truth, sometimes people who are a distance away have an unrealistic view of what "should" be rather than what "can" be.

 

[Saffie]

If they have sufficient funds they are required to self fund and when it reaches a level (? around £23,500) then the LA will become liable for some of the cost and when it reaches around ? £12,500 they become totally responsible.

Sorry - but it's now £14, 250!

 

[caplee]

Thanks for all your responses. To be honest he is at a stage where he doesn't know who we are (more routine of he knows the houses he visits). However, he knows to collect his pension, to walk his dog twice a day (albeit without a lead.....), to call a taxi so he can go to the pub on a Sunday and sing on karaoke (he is amazing at this) but I think it is more due to the fact that he just won't eat!

He doesn't have a cooker connected anymore at home and food it bought for him and made for him but he isn't interested. He has drank washing up liquid because it was 'lemon' and he thought it would be good for him when he had a sore throat haha... bless!

x

 

[florence43]

Hello!

I can empathise with you and your concerns. It's such a worrying time, and must be awful being so far away. I found it difficult to keep on top of my mum's rights and her care, and we were in the same country!

I don't know if this will help, but when my mum was admitted to hospital, after a series of falls (she was only 67 and had early onset dementia), we made it very clear that her wishes (HERS) were to remain at home for as long as possibler. We felt for her illness, it was so important that she was in familiar surroundings with familiar routines. One of our main concerns was that if she was moved "too early" to a home of any kind, then her decline would be more rapid than had she stayed at home longer. We knew that a point would come when she'd probably have to have residential care, since we had lost our dad and my sister and I were both over an hour away with very young children. Full time care with either of us would have been a huge strain.

However, up until the point she went into hospital, she had a very good care plan, through social services, where carers came 4 times a day, after assessing her needs and basing a package around them, plus meals on wheels for her daily hot meal. She was assisted with personal care (encouraged, rather than done for her), plus help with making her breakfast, tea, taking pills, going for a walk and just a bit of company. It worked very well.

Before discharge from hospital, the staff had wanted her to go into a Nursing Home. Her needs had changed dramatically over the 3 weeks in hospital, and her dementia had taken a drastic downturn. She had gone from walking and feeding herself to being bed bound and doubly incontinent. It was so fast.

But with mum's wishes respected, the hospital arranged an assessment team to moniter mum's needs in her own home to know for sure if it was possible to stay there. They planned to do this for 2 weeks and make a decision. Within the first week, it was abundantly clear that the maximum care package of 4 visits a day was not enough to safeguard her. She would have been at huge risk.

So it was clear. The decision was based on evidence, not opinion, and I think this is where the grey area is with your grandad. My sister and I made the decision to move mum to a nursing home because her illness then required 24 hour nursing care. To have insisted she stay at home would have been neglect. Her health would have been at risk, and we knew we wouldn't allow that. But this was proven.

Can your uncle arrange for an assessment team (social services or hospital?) to moniter your grandad's needs at home, and possibly put together a package for him to retain his independence? From what you describe, he has a few "funny ways", but I've heard (and seen) worse!! He still appears to have a quality of life that matters, and that's the point.

Let's face it...it's doesn't get any better, so long may it last.

i hope this has helped, and at the least made you feel more informed, xxx

 

[Mariondb]

In an answer NO. If someone is too vulnerable to return home then it can be determined that a Care Home is necessary and if there are savings and a property then you will be self funding unless you get CHC.

You cannot be seen to "dispose" of assets to avoid it - particularly if your uncle is his Attorney.

Unfortunately Continuing Healthcare has absolutely no basis in fact or logic and is very much a postcode lottery. From our experience Primary Care Trusts fight NOT to award CHC rather than analyse whether it should be given. They hold the purse strings so it is in their interest to avoid it wherever possible.

My MIL has this year become bed or chair bound - being moved only with a hoist (this occurred during a year when most of the time she was in hospital). She is doubly incontinent, has very thin skin which develops sores at the drop of a hat she cannot self medicate, and relies upon food being prepared for her. Her medical condition is high blood pressure which has to be continually monitored, severe kidney disease stage IV, heart failure, cerebral amyloid angiopathy, hyperkaelemia....and some I have probably forgotten.

It was decided by the District Nurse and SW she was too vulnerable to live at home.

She was also diagnosed with Vascular Dementia although most of her mental problems were clearly as a result of UTI's and not the dementia (despite what medics chose to say.)

She failed the assessment for Continuing Healthcare - some of the scores she got we could not believe were attributed to her. That all being said, now she is in a nursing home with 24 hour monitoring and care, she has perked up. It is costing around £800 a week although she gets the nursing allowance of £108 per week (a joke as you couldn't employ a nurse for that and to my mind the fact she needs nursing care is a clear indication she needs continuing care!)

You don't mention his medical condition, but the point is that dementia is deemed to be a "social" disease rather than a medical one as far as CHC is concerned and medical criteria seem to take precedence - dementia is a very small part of their criteria.

Unfortunately if you are responsible and save for your old age from a taxed income, then you are considered to be able to pay out for it - leaving an inheritance to loved ones is not deemed to be important. The days of healthcare being provided from cradle to grave are long gone. It is an absolute crime but there it is.

If you believe there are medical criteria that meet CHC then you can appeal, but it is a long process during which he will have to pay for his Care Home.

 

[cattz66]

Hi everybody,

I'm new to the forum and a bit taken aback at the overload of information available to me on the subjects I'm looking at.

My Grandfather was diagnosed with dementia several years ago but in the last 12 months we have seen a serious downturn . To that end he has been into a care home to have his abilities assessed for the past couple of weeks. Today (and I'm not fully sure of the full details as I'm living in Germany with my hubby who is in the Forces) my uncle, who is his power of attorney, has been told that he will not be allowed to return home due to his wellbeing.

There was no desire to put my Grandfather into a care home but now this is the only option we are being given. Having worked all his life and paid for his property he bought over 60 years ago and put away a few pennies for a rainy day I know if the family had opted to put him into a home he would have had to self fund. if the assessment centre are refusing to let him return home would this make him eligible for continuing care?

I really don't think it would humanely right that he wouldn't be allowed home, at the say so of the assessors, yet be charge £700 upwards a week for care and be forced to sell the family home to do so.

I know we are unable to get rid of his finances just to avoid fees but is it possible to pre pay for funerals from his money and if continuing care was rejected pay for lawyers to fight this?

Thanks in advance for any information - bit overwhelmed to say the least as this wasn't the decision we wanted!

Regards,

Caplee

hi just because he has been identified as needing to be in residential or nursing care doesnt automatically mean in he will get the fees paid under continuing care, each person is assessed individually and pending the complexities and nature of his needs not on a diagnosis, and he may or may not get awarded it,if he is awarded it it is not means tested so any property or savings is not taken into account whatsoever but it is never given for life and is always subject to at least an annual review where it can be stopped when the level of his needs change. if he does not meet eligibility for continuing care his savings any income, and the value of his property will be assessed by social services and pending how much that is he can be expected to make a contribution to the costs of the care. If he has been assessed as needing is a nursing home (where there are registered nurses opossed to a residential home) part of the cost will be met by health approx £108 per week this is called fnc (funded nursing care) this is not means tested .If he is not awarded continuing care and his level of needs change the can be reassessed for continuing care again at any time, good luck

 

[cattz66]

In an answer NO. If someone is too vulnerable to return home then it can be determined that a Care Home is necessary and if there are savings and a property then you will be self funding unless you get CHC.

You cannot be seen to "dispose" of assets to avoid it - particularly if your uncle is his Attorney.

Unfortunately Continuing Healthcare has absolutely no basis in fact or logic and is very much a postcode lottery. From our experience Primary Care Trusts fight NOT to award CHC rather than analyse whether it should be given. They hold the purse strings so it is in their interest to avoid it wherever possible.

My MIL has this year become bed or chair bound - being moved only with a hoist (this occurred during a year when most of the time she was in hospital). She is doubly incontinent, has very thin skin which develops sores at the drop of a hat she cannot self medicate, and relies upon food being prepared for her. Her medical condition is high blood pressure which has to be continually monitored, severe kidney disease stage IV, heart failure, cerebral amyloid angiopathy, hyperkaelemia....and some I have probably forgotten.

It was decided by the District Nurse and SW she was too vulnerable to live at home.

She was also diagnosed with Vascular Dementia although most of her mental problems were clearly as a result of UTI's and not the dementia (despite what medics chose to say.)

She failed the assessment for Continuing Healthcare - some of the scores she got we could not believe were attributed to her. That all being said, now she is in a nursing home with 24 hour monitoring and care, she has perked up. It is costing around £800 a week although she gets the nursing allowance of £108 per week (a joke as you couldn't employ a nurse for that and to my mind the fact she needs nursing care is a clear indication she needs continuing care!)

You don't mention his medical condition, but the point is that dementia is deemed to be a "social" disease rather than a medical one as far as CHC is concerned and medical criteria seem to take precedence - dementia is a very small part of their criteria.

Unfortunately if you are responsible and save for your old age from a taxed income, then you are considered to be able to pay out for it - leaving an inheritance to loved ones is not deemed to be important. The days of healthcare being provided from cradle to grave are long gone. It is an absolute crime but there it is.

If you believe there are medical criteria that meet CHC then you can appeal, but it is a long process during which he will have to pay for his Care Home.

hi the appeals process is fairly simple..if you disagree with the descision you just put in writng to disagree and want to appeal. a new team of social and health professionals will reassess and make a decsion ideally this is within 28 days of an appeal letter sent

 

[Mariondb]

hi the appeals process is fairly simple..if you disagree with the descision you just put in writng to disagree and want to appeal. a new team of social and health professionals will reassess and make a decsion ideally this is within 28 days of an appeal letter sent

Unfortunately it really isn't always that simple - certainly not in my MIL's case.

However, as far as Caplee is concerned, the point is that her grandfather has to at least meet the criteria in the first place. Whilst I feel it is absolutely right that nobody should have to pay for their care, unfortunately unless you go some way to meeting CHC criteria on medical grounds, you have to pay - there is simply no choice if you have funds !

The fact you disagree with paying is not sufficient grounds for assessment and certainly not for appeal.

Caplee, we do not know your Grandfather's medical needs just that he has been assessed that he cannot be returned home for his "wellbeing". That is not the same as CHC assessment and it may be that whilst he is too vulnerable to live at home, that does not mean he meets CHC criteria - dementia is not in itself the principal or sole deciding factor.

So find out from your Uncle if he has been assessed for CHC, if not why not, what his medical needs are and take it from there.

 

[Saffie]

(a joke as you couldn't employ a nurse for that and to my mind the fact she needs nursing care is a clear indication she needs continuing care!)

Marion is right. A sister in the community hospital where my husband was a patient said that despite him having numerous serious physical problems as well as dementia, his need could be met with nursing care rather than the specialist care which was necessary to warrant CHC funding. He was refused CHC funding and in the letter which accompanied the paperwork i had requested the PCT send me, I was told I could challenge the process of the application but not the conclusion. so I could challenge the 'tool' the nurse had completed, which I agreed with but not the downgrading of practically every aspect she had written. I have also been told that, in our area anyway, it is virtually impossible to obtain CHC funding for anything other than terminal care.