Could anyone give me any pointers on appealing a continuing care denial. My mother in law is 92 has Dementia and Alzheimers is doubly incontinent and aggresive striking out at carers as well as verbally abusing them. She is in hospital at the moment, we are being pressured to ship her out to a care home at a cost of £750 per week. We have cared for her and my father in law for the last 6 years he died 2 years ago so we have really commited ourselves to this and done our bit and more. Yet all they have accrued over a long lifetime of work will be taken to pay for her care we feel this is a tab the NHS should pick up. Alheimers is a progressive and degenerative illness how ill do you have to be to get help
Denied Continuing Care
- Thread starter bernadette1947
- Start date
I was told by a nurse in a nursing home I visited, whilst seeking such a place for my husband, that, in our PCT anyway, you have to be terminal.
My husband was expected by the consultant and other medical staff to be granted CHC funding due to his numerous physical problems as well as his dementia, but the aplpication didn't even reach the panel. Numerous TPers are in the same position, My SW said that the bar is raised every year.I am just too tired to appeal and don't think it would get me anywhere anyway. They downgraded, inaccurately, many of the needs which were categorised by the nurse as of the highest level. Good luck if you opt to appeal, you may need it.
Hello Bernadette, welcome to Talking Point.
I am sorry to read about your father in law, you will find many people on TP who will understand what you are going through.
This link on Continuing Health Care may offer you some help. It contains info on appeals.
As Saffie has already said numerous TPers are in the same position. My FIL passed away in an EMI Nursing Home, after we had cared for him for many years at home, he was never awarded CHC. I admit it is all a mystery to me.
Very best wishes to you. x
I am sorry to read about your father in law, you will find many people on TP who will understand what you are going through.
This link on Continuing Health Care may offer you some help. It contains info on appeals.
As Saffie has already said numerous TPers are in the same position. My FIL passed away in an EMI Nursing Home, after we had cared for him for many years at home, he was never awarded CHC. I admit it is all a mystery to me.
Very best wishes to you. x
My Dad was terminally ill and had vascular dementia.
The community matron said it wasn't worth applying as you needed to be "lying on the floor dribbling and unable to feed yourself" before they would consider an application.
The community matron said it wasn't worth applying as you needed to be "lying on the floor dribbling and unable to feed yourself" before they would consider an application.
I have a friend who has just e-mailed to say that her Mother who died last year has been awarded NHSCC retrospectively.
More importantly she also received a letter from the NHS admitting that her Mum had suffered 'financial injustice'
Her case was won for her by the same South Wales Solicitors who are handling my fathers case and it took 4 years.
If you don't appeal the decision, either fighting the case yourself, using a specialist solicitor or engaging the advice and help of the NHSCC volunteers, then to my mind an injustice will go unchecked.
More importantly she also received a letter from the NHS admitting that her Mum had suffered 'financial injustice'
Her case was won for her by the same South Wales Solicitors who are handling my fathers case and it took 4 years.
If you don't appeal the decision, either fighting the case yourself, using a specialist solicitor or engaging the advice and help of the NHSCC volunteers, then to my mind an injustice will go unchecked.
My mum was awarded CHC when her doctor said she was dying and we wanted to look after her home,we were told it would be reviewed after 3 months although she only lived for another 6 days. However it was put in place with immediate effect - paperwork filled in on a Tuesday by district nurse and written confirmation arrived the next day complete with hospital bed, care package etc. I really can't fault the response - however the key thing did seem to be that it was the terminal diagnosis that triggered the package. Mum had very complex medical problems and I was going to have to sell her house to apy for care and in fact had just put arrangements in place to do so. Good luck with an appeal - my understanding was that it was meant for all those who need nursing care.
I'm waiting for a CHC decision on my mum who has MS and dementia. I am told our PCT will pay if the person meets the criteria in the DST.
You can appeal by contacting the PCT. When they turn you down I believe they are obliged to tell you how to appeal and give you the address of who to notify - there is a time period that you have to meet.
Good luck x
You can appeal by contacting the PCT. When they turn you down I believe they are obliged to tell you how to appeal and give you the address of who to notify - there is a time period that you have to meet.
Good luck x
Pied, I was told that i could not appeal against the decision, only the process. As I agreed with what the nurse had written - which the PCT then downgraded - it left me with nowhere to turn.
My mum had previously been assessed that not only did she not get CHC but she did not even need to be in a CH. I asked for her to be re-assessed in Jan 2011 when she had been in a CH ( self funding) from August 2010. She was immobile, unable to speak and hardly eating or drinking, doubly incontinent. She died on 05 February 2011 before the assessment had taken place. As a family we did not have the energy to complain about this although SS told me her needs had not been assessed properly and they thought we were right. I am sure there are hundreds of families who feel the same. You spend so long fighting the system to get the care your relative needs that when they die what is the point as they are no longer around to benefit. I know we should do it for the ones that follow but you just run out of energy
Tre
Tre
My mum has been self-funding for over seven years now from her pension, savings and the proceeds from the sale of her small bungalow. She and Dad saved 'for their old age', not so that they could pass money on to me, and I am happy that their assets are being used to provide for her in a care home of my choice, rather than being at the mercy of the State.
No Saffie.
(It's little wonder there is a post code lottery
)You were given wrong information.
You can appeal the decision.
Lemony - Dave actually had a pressure sore on his body when he was assessed - and had developed gangrene in his remaining foot from an earlier one which was still active - hence my feeling of "what's the point!"
The only anecdotal information I have is from neighbours who also wanted to care for their father at home, but doctors and social workers insisted he be hospitalised. Then, because they thought he had only 2 weeks to live, he went into a nursing home fully funded. He is still there, two years later and the costs of £1700 per week (!!) are all covered by the health authority.
We were very lucky to get fully funded care on the first assesment with Dad and I found it most useful to keep a Diary on Dad to document everything that he did ,said , saw and behaviour changes . Then on the day of the assesment I could quote from the diary , times and dates to back up evidence for each criteria that had to be met.-
Hi
My mum gets continuing care funding. She went into hospital in August 2011 and the DST was in October. At the time she was very poorly. She had repeated UTIs, a reoccurring gastric stricture, severe vascular dementia (confusion, aggression, anxiety, aggitation and poor cognition/memory), off her legs, high falls risk, incontinence, low bmi, insomnia, history of stroke, high BP etc. She moved to a care home in November and was assessed as needing nursing dementia or EMI care. She had falls in hospital and was so aggitated/aggressive that they had to provide 1:1 care to keep her safe. She literally forgets she cannot walk. She has no concept of time so won't wait for anything and forgets what has just happened. Things have been up and down, at times she has been very poorly and at other times not so much. At present she is eating well and when I visit she is generally calm but staff tell me she has periods most days where she is quite 'active' or 'shouty'. It tend to be when she is by her self - part of is is for attention. She tends to live in the moment and cannot remember the behaviour afterwards or why she does it. Her medication is closely monitiored and I am sure it helps. She is on fork mash diet now and is feeding her self but if she is sleepy or disinterested they feed her and drop to puree if necessary. She has hi cal supplements and her fluid intake is watched and her weight is monitored regularly. After being furious about everything when she first moved to the home, they have won her round with love and kindness and while she does still say she would rather be at home she is much more settled (if confused a lot of the time about where she is and why). She does recognise staff and is smiley with them which is a blessing. They are brilliant with her. Luckily at present she is infection free which makes a huge difference to her general health. In terms of her dementia she has good days and bad days. Initially she had 18 hours 1:1 in the home, reducing to 10 hours and then stopping. She will now sit in a recliner which helps to keep her safe. They have sensor mats on her bed and on the floor and a crash mat. She is on a high low bed which they put at its lowest. She now has to be hoisted but still thinks she has been out shopping with her mum or making meals. One day when the carer wheeled her off to the toilet in her chair she laughed and said 'anyone would think I couldn't walk!'
She scored 3 severe and a number of high on the DST and being in hospital meant there were loads of records kept as to her behaviour, eating, how much care she needed really which helped. The meeting took place at the hospital with myself, senior nurse, social worker, someone from the mental health team and the nurse from the pct.
Good luck with getting the funding, I know it can be a nightmare x
My mum gets continuing care funding. She went into hospital in August 2011 and the DST was in October. At the time she was very poorly. She had repeated UTIs, a reoccurring gastric stricture, severe vascular dementia (confusion, aggression, anxiety, aggitation and poor cognition/memory), off her legs, high falls risk, incontinence, low bmi, insomnia, history of stroke, high BP etc. She moved to a care home in November and was assessed as needing nursing dementia or EMI care. She had falls in hospital and was so aggitated/aggressive that they had to provide 1:1 care to keep her safe. She literally forgets she cannot walk. She has no concept of time so won't wait for anything and forgets what has just happened. Things have been up and down, at times she has been very poorly and at other times not so much. At present she is eating well and when I visit she is generally calm but staff tell me she has periods most days where she is quite 'active' or 'shouty'. It tend to be when she is by her self - part of is is for attention. She tends to live in the moment and cannot remember the behaviour afterwards or why she does it. Her medication is closely monitiored and I am sure it helps. She is on fork mash diet now and is feeding her self but if she is sleepy or disinterested they feed her and drop to puree if necessary. She has hi cal supplements and her fluid intake is watched and her weight is monitored regularly. After being furious about everything when she first moved to the home, they have won her round with love and kindness and while she does still say she would rather be at home she is much more settled (if confused a lot of the time about where she is and why). She does recognise staff and is smiley with them which is a blessing. They are brilliant with her. Luckily at present she is infection free which makes a huge difference to her general health. In terms of her dementia she has good days and bad days. Initially she had 18 hours 1:1 in the home, reducing to 10 hours and then stopping. She will now sit in a recliner which helps to keep her safe. They have sensor mats on her bed and on the floor and a crash mat. She is on a high low bed which they put at its lowest. She now has to be hoisted but still thinks she has been out shopping with her mum or making meals. One day when the carer wheeled her off to the toilet in her chair she laughed and said 'anyone would think I couldn't walk!'
She scored 3 severe and a number of high on the DST and being in hospital meant there were loads of records kept as to her behaviour, eating, how much care she needed really which helped. The meeting took place at the hospital with myself, senior nurse, social worker, someone from the mental health team and the nurse from the pct.
Good luck with getting the funding, I know it can be a nightmare x
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I'm just shocked and saddened that people who have worked all their lives are being passed off as not being worthy of continuing care..... sorry but FFS... this country and nhs has gone to the wall........all I can say,based on my experience, is that you have to 'sound off' at the highest level you can get and get these faceless beaurocrats to face up to the reality of your loved one being in need of personal care round the clock.... keep detailed records of their care and note anything that is less than satisfactory and go for the jugular..... they dont like it and opt for the easier option. I am sorry if this sounds unreasonable or excessive but if they can put your folder somewhere else they will... make then personally accountable and things soon start to change....
deadline for 'claim back' care home fees
Hello ~ new member here, so finding my way around the forum. Mum with diagnosed Altzheimers was admitted to a nursing home following the death of Dad in May 2009. Drug therapy had been started prior to her admission. Their home was sold to support the nursing home fees. Her Altzheimers has progressed to the extent where she does not recognise family & friends, she is at times aggressive, unable to communicate, needs supervision at meal times and following a fall at the home now has mobility issues. Mum cannot now dress or wash herself and needs all care.
Following assessment in May of this year, she is deemed not to qualify for NHS Continuing Care and was awarded Registered Nursing Care Contribution. Astonishing decision ~ what are their criteria. We are seeking help with appeal but my question today relates to the potential to claim back care home fees. There is a deadline for this ~ 30 September. Can we start a claim process whilst appeal for Continuing Care is taking place? What is the best starting point for a claim. Any help from fellow members to navigate this minefield would be very much appreciated.
Hello ~ new member here, so finding my way around the forum. Mum with diagnosed Altzheimers was admitted to a nursing home following the death of Dad in May 2009. Drug therapy had been started prior to her admission. Their home was sold to support the nursing home fees. Her Altzheimers has progressed to the extent where she does not recognise family & friends, she is at times aggressive, unable to communicate, needs supervision at meal times and following a fall at the home now has mobility issues. Mum cannot now dress or wash herself and needs all care.
Following assessment in May of this year, she is deemed not to qualify for NHS Continuing Care and was awarded Registered Nursing Care Contribution. Astonishing decision ~ what are their criteria. We are seeking help with appeal but my question today relates to the potential to claim back care home fees. There is a deadline for this ~ 30 September. Can we start a claim process whilst appeal for Continuing Care is taking place? What is the best starting point for a claim. Any help from fellow members to navigate this minefield would be very much appreciated.
