Continuing Health Care - Preparing to fight PCT's decision

monkeyspanner

fedupalready wrote: »

Hi Monkeyspanner

thanks for replying. Some of the statements seem reasonable but certainly one or two of them could potentially become a severe. i will bear this in mind, its a complete minefield and obviously difficult as alot of mum's problems are considered not to need nursing assistance.

If you wanted to appeal the decision your next step would be to request an IRP (independant review panel) from the PCT. They would look at the evidence and you could make representations regarding the assessments made to date. We found the IRPs helpful and the panel members much more receptive to our judgements and to the interelated nature of my MIL's medical problems.

As you say dementia is common in this group of patients and it seems more difficult to get the assessors to accept it as a genuine medical condition rather than a standard factor of old age.

bloaty

My 33 yr old nephew has a rare stomach cancer. He has had this for nearly 2 years and his first lot of chemotherapy held it back for 9 months but it has since spread. He was admitted to hospital 6 weeks ago and is receiving further chemotherapy but has been told that they would be happy for him to go home and continue his chemotherapy but he will need to have TPM Feed which I believe is quite costly and his local PCT is holding back on agreeing to fund this.

He is currently in Christies hospital in Manchester and his PCT is Halton & St. Helens. Does anyone have any thoughts on the best way to move this forward please?

Thank you.

Katykat

Hello Bloaty, may I first just say how sorry I am for your family. I'm not sure your predicament falls under the umbrella of the Continuing care fiasco. Refusal to pay for continuing care is the PCT's basically saying that Dementia, Strokes, and other conditions that affect (mainly- but not exclusively) elderly people are not MEDICAL conditions, but social and therefore do not qualify for free NHS care. Your nephews case is different in that they do acknowledge he has a medical condition, but for some reason or another are refusing to pay for some of his treatment. Now, I dont know too much about this treatment, but I am guessing that his prognosis is not good. However, any kind of feeding surely must fall in to the category of basic life support. I dont know what kind of back up you are getting, but if you've not already done it I suggest you get all the cancer support services involved imediately- Macmillan, local hospice- they are not just there for end of life care but also provide support in the care and respite for families. I know that Halton Haven is a really good hospice. Even if your nephew wants to stay at home, all these services can provide support to allow him his wishes. They would also be able to advise you what you as a family can do to put pressure on the PCT. You read of cases where PCT's refuse to pay for treatment that THEY say is not ptroven to either prolong life or ease sympltoms, but I would have thought that to deny nutrition to anyone breaches the human rights act. However, that is just my opinion, and I do not have any legal knowledge.
My thoughts are with your family

smilelols

Dear all

I hope you don't mind me jumping straight in and asking advice straight away, but i've so far found you all my only reliable source of advice.

My mum has just been refused CHC funding despite having 4 highs (cognitive, psychological, mobility, food and drink) and 4 moderates (behaviour, communication, continence, drugs) in her assessment and these being agreed by the PCT. Like recently mentioned there seems to be no definitive number of points that are needed and unfortunately in terms of her breathing, skin etc my mum is very healthy. She has a diagnosis of dementia and think this is reasonably common for this group of patients. We are not alone with this as the hospital are equally confused. We could possibly get a couple of the moderates to high with further evidence.

Where do we go from here are we flogging a dead horse to pursue this? it all seems to be so far as mum and dad worked so hard all of their lives for no end it seems. sorry to moan but struggling a little with all of this despite having read alot around the subject

Hi there
Just saw this thread and your request for info/advice. As part of my job (social services) I often participate in CHC assessments and will challenge the PCT if I disagree with a decision.
From what I read, it looks like the DST has shown that your mum has some very clear health needs, however they are likely to be saying not eligible if they cant see (or dont want to) any links between the domains. ie - is there a link between the mobilty domain with skin intergity and continence? If there is, you could argue that there is an intensity of needs due to the inter related links between the domains. Also what is the 'complexity' and 'unpredicability' of your mum's needs. Do her needs go up and down. If you can show this, then you have a better chance at an appeal of the decision. Sorry cant give better advice, but without details I'm limited on what I can comment on.

Also, on a general note (and I am aware that I've not read all of the comments on the thread) please if anyone is going for CHC please, please, please get social services involved - even if the person is self funding!!
Social services do have a vested interest in making sure that people are properly assessed for CHC - because at some point, the local authority will pick up the bill for the service when people's savings run out.
Many authorites are developing certain members of their teams to become 'mini experts' on CHC to help this process.
The Department of Health is aware of the postcode lottery around CHC and have introduced new guidance to try and reduce this happening, some PCT and local authorites have taken on board this guidance and the process is changing and getting better - but some areas are slower than others.
The DOH website has loads of info on it - and most of it written in plain English so people shouldnt get to lost with it!

Errata

The Department of Health is aware of the postcode lottery around CHC and have introduced new guidance to try and reduce this happening, some PCT and local authorites have taken on board this guidance

Link here for the updated guidance -
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_115477.pdf

bloaty

Hi Kaykat

Thank you for your kind thoughts and very helpful reply.

I hadn't thought of it how you have put it but you are right, he isn't able to keep any food down, which has been the case now for quite a number of months and he is over 6' tall and weighs under 7 stone.

Christies would be happy to let him continue having his chemotherapy at home but are unable to without the feed which is administered during the day due to the above. They have let him home for a few hours today.

We hope they will come to a decision soon and then we can consider any other options, ie paying for it as a family for as long as we can afford to.

In the meantime, we will explore some of the things you have suggested.

Your help and advice is much appreciated.

Regards

Bloaty

Katykat wrote: »

Hello Bloaty, may I first just say how sorry I am for your family. I'm not sure your predicament falls under the umbrella of the Continuing care fiasco. Refusal to pay for continuing care is the PCT's basically saying that Dementia, Strokes, and other conditions that affect (mainly- but not exclusively) elderly people are not MEDICAL conditions, but social and therefore do not qualify for free NHS care. Your nephews case is different in that they do acknowledge he has a medical condition, but for some reason or another are refusing to pay for some of his treatment. Now, I dont know too much about this treatment, but I am guessing that his prognosis is not good. However, any kind of feeding surely must fall in to the category of basic life support. I dont know what kind of back up you are getting, but if you've not already done it I suggest you get all the cancer support services involved imediately- Macmillan, local hospice- they are not just there for end of life care but also provide support in the care and respite for families. I know that Halton Haven is a really good hospice. Even if your nephew wants to stay at home, all these services can provide support to allow him his wishes. They would also be able to advise you what you as a family can do to put pressure on the PCT. You read of cases where PCT's refuse to pay for treatment that THEY say is not ptroven to either prolong life or ease sympltoms, but I would have thought that to deny nutrition to anyone breaches the human rights act. However, that is just my opinion, and I do not have any legal knowledge.
My thoughts are with your family

monkeyspanner

If you are feeling alone in your fight against the NHS read this.
http://news.bbc.co.uk/1/hi/wales/north_west/8198159.stm

Errata

monkeyspanner wrote: »

If you are feeling alone in your fight against the NHS read this.
http://news.bbc.co.uk/1/hi/wales/north_west/8198159.stm

Hugh James, the solicitors in the report, have a great deal of experience and success in class actions.
I was part of a successful one a few years ago, for something else, and through them was covered by insurance against any costs.

Katykat

Hi Smilelols- thanks for your post. Many of us are very sceptical about the role of social services as unfortunately ( in my case ) past behaviour has been sketchy, and sometimes absent. For instance, at the very beginning of my mums dementia, her Social worker SHOULD have informed me about Continuing Care, but almost the first thing he did was ask her ( a vulnerable lady) how much money she had. This continued through 2 months in respite care, 3 months in psychiatric hospital and 2 1/2 yrs in residential care. At the DST, a different Social worker ( they change frequently) attended & when i asked her if she was going to work to the local ADASS guidelines which were in position then, she told me that it was up to the PCT to make the decision. My mum scored 1 severe, 3 highs and several moderates. This was completly out of the scope of S Services according to ADASS, but she quite happily went along with the PCT refusal to award CC. I believe this ADASS document no longer applies, but have no idea if it has been superseeded by anything else. I really would like to think that SS had my mums best interests at heart as like you say, her money is about to run out and they will have to start contributing. I'm wondering if SS support wil increase when they are left with the bill. I am interested however, in your comment that many LA's are developing "mini experts" within their teams and I'd like to ask if there is any way I can find out if my LA have one.
I'm sorry I sound so negative about S Services, but thats my experience. Everyone would like it to improve, but in the meantime many elderly people are losing their homes and life savings.

monkeyspanner

Katykat wrote: »

Hi Smilelols- thanks for your post. Many of us are very sceptical about the role of social services as unfortunately ( in my case ) past behaviour has been sketchy, and sometimes absent. For instance, at the very beginning of my mums dementia, her Social worker SHOULD have informed me about Continuing Care, but almost the first thing he did was ask her ( a vulnerable lady) how much money she had. This continued through 2 months in respite care, 3 months in psychiatric hospital and 2 1/2 yrs in residential care. At the DST, a different Social worker ( they change frequently) attended & when i asked her if she was going to work to the local ADASS guidelines which were in position then, she told me that it was up to the PCT to make the decision. My mum scored 1 severe, 3 highs and several moderates. This was completly out of the scope of S Services according to ADASS, but she quite happily went along with the PCT refusal to award CC. I believe this ADASS document no longer applies, but have no idea if it has been superseeded by anything else. I really would like to think that SS had my mums best interests at heart as like you say, her money is about to run out and they will have to start contributing. I'm wondering if SS support wil increase when they are left with the bill. I am interested however, in your comment that many LA's are developing "mini experts" within their teams and I'd like to ask if there is any way I can find out if my LA have one.
I'm sorry I sound so negative about S Services, but thats my experience. Everyone would like it to improve, but in the meantime many elderly people are losing their homes and life savings.

I do not believe your experience of SS is unusual. The ADASS document was always just a commentary regarding proper awarding of CHC as the PCTs are responsible for assessment and awards. The SS ask the question about money because if the patient has capital above the savings limit the SS know they do not have to get involved as it will be an arguement between the PCT and the patient. You may well find the SS become much more interested in CHC funding if they may now have to contribute to care home costs and having stripped your Mum of the majority of her savings suddenly feel that she is now entitled to CHC funding or lternatively they may come to some behind closed doors agreement with the local PCT over split funding.

If your Mum is about to go from being self-funded to SS supported funding watch out for a funding gap between the level of fees the SS is prepared to support and the fees your Mum is currently paying. Many self funders pay substanially more than council supported residents for the same level of care in the same care home. Care homes are understandably reluctant to drop their fees back to the council levels when self-funding ends and council support begins and a funding gap appears. In this circumstance the SS will ask for a 3rd party top-up which officially cannot be funded by the resident themselves (although SS sometimes turn a blind eye if the resident does fund the top-up) because their savings have been reduced to the savings limit. In this circumstance relatives/friends/charities are faced with a choice between paying the top-up or having their relative moved to another and possibly inferior care home. Also your Mum will still be expected to contribute the majority of her income including state pension tothe cost of the care home fees.

If the question of top-up fees or a move does occur the SS are only allowed to ask for 3rd party top-ups if a suitable alternative care home in the local area can be found that will accept the resident at the standard council supported fees. If not the SS have to fund the difference themselves and cannot ask for a top-up. In addition the SS should undertake a risk assessment of any proposed move which should take into account the residents physical and mental wellbeing this can include factors such as distance from relatives and their continued ability to make family visits. Relatives including spouses are not obliged to make 3rd party top-ups although of course many do in order to do the best for their relatives. Unfortunately many are not in a position to help financially which sometimes results in a move of care home which distressing for the resident and family.

I hope the transition goes smoothly.