NHS Continuing Healthcare to be Featured on BBC Radio 4’s Inside Health Programme

[Saffie]

thought i would just share my experience regarding CHC funding. My mother has been in a private care home for two and a half years and has capital to last approx another two years.She suffers with dementia. Unknown to myself (also attorney) the care home asked for a CHC funding assessment by the local CCG. Following just two meetings during asix week period, mother has been awarded the "full" funding, this is wonderful albeit it is still £350 a week short of the care home fees! The CCG insist they have a maximum they will pay, but their guidance notes state that "all fees will be paid", my question is, has anyone experience of a similar situation regarding the shortfall?, (the CCG said we will have to arrange a top up with the care home for a contract along the lines of "recreational services!")
Good luck to everyone going for funding, one day Dementia will be treated as an illness that obviously requires "ongoing primary health and nursing needs" from the day of diagnosis.

My understanding that top-ups are not permitted with CHC funding as they will pay the fees of a nursing home that will satisfy the needs of the sufferer concerned.
I also understand that the CCG have an upper limit above which they cannot go and
that they have a list of homes that they consider suitable for the care required within that budget.
However, this understanding is based on one CCG only so there may be differences between CCGs just as there are differences in the criteria for them allocating the funding in the first place. Some are more generous than others.

 

[Pete R]

my question is, has anyone experience of a similar situation regarding the shortfall?, (the CCG said we will have to arrange a top up with the care home for a contract along the lines of "recreational services!")

Government guidance says that patients should never be allowed to pay towards NHS services, so it’s not possible to top up NHS continuing healthcare care packages as you can with local authority care packages.

The only way that NHS continuing healthcare packages can be topped up privately is if you pay for additional private services on top of the services you get from the NHS. These private services should be provided by different staff and preferably in a different setting. Or to use your words "Recreational Services".

I have on record that in my area, Staffs, the maximum for full funding is just £660 for a Nursing Home placement.

 

[superspecial]

Government guidance says that patients should never be allowed to pay towards NHS services, so it’s not possible to top up NHS continuing healthcare care packages as you can with local authority care packages.

The only way that NHS continuing healthcare packages can be topped up privately is if you pay for additional private services on top of the services you get from the NHS. These private services should be provided by different staff and preferably in a different setting. Or to use your words "Recreational Services".

I have on record that in my area, Staffs, the maximum for full funding is just £660 for a Nursing Home placement.

My mistake, it was me saying a "top up", the CCg said that "the shortfall will have to be covered with the care home, but it cant be for nursing needs".

 

[WILLIAMR]

Ah! Sorry mis-understood

When you wrote

' Fortunately the people I have helped have been where the patient has been in hospital and the hospital wanted its bed back and the son / daughter just refused to pay and the hospital has had to take action to get the patient out.

I didn't realise that you were referring to YOUR situation. Silly me

So is your point that you have advised people not to find CH/NH's for their relatives and CHC will kick in? And this has happened EVERYTIME? Pete went from a Mental Health assessment unit straight to a CH. I choose the CH myself as I did not want Pete to go to the one recommended by the SW. At the same time I did not want Pete to stay in the MHU for too long as he was vulnerable there. (violence from other poor souls and a less than homely scenario.)

Hi Lyn

I have helped in cases 8 in situations where the son daughters were joint owners of the parents house.

I have also helped in 1 case where a daughter had never left home.

In 7 of the cases the parent got CHC funding but did not in 2 of the cases but none of the offspring had to sell the house.

In respect of the daughter who had never left home her mother had died a few weeks before and had left her half of the house to her but probate had not gone through when the father was admitted to hospital so she was not on the land certificate.
Probate came through after the assessment and her name then went on the land certificate.

The social worker tried to say her name was not on the land certificate at the time of the assessment and therefore the house totally belonged to her father.

The argument then turned to the fact the daughter was 60. She did call the ambulance 2 days before her 60th birthday and the social worker said she was not 60 at the time the father was admitted to hospital and the social worker then said again the house would have to be sold.

I stepped and argued she was a beneficial owner and as a result the house could not be counted as part of the father's assets.

The council did agree in the end.

In any case the father later got CHC funding.

I have later read that the daughter would have been ok by virtue of the fact she was 60 as the date the father entered care.

William

 

[Saffie]

In 7 of the cases the parent got CHC funding but did not in 2 of the cases but none of the offspring had to sell the house.

I'm with Lyn on this.
I think you are giving new members the wrong impression about CHC funding.
I just don't see what the connection is with the selling of a house and being awarded CHC funding.
Whether someone has a house to sell or not makes absolutely no difference to the awarding of CHC, i.e. NHS funding.
It is awarded for health not financial reasons.

Also, my husband was on delayed discharge in hospital for some time and I was under considerable pressure to decide on a nursing home quickly and warned that unless I did, he could be placed in a nursing home with a vacancy.
He had been refused CHC funding.

The selling of a house is down to the SS/LA alone. Yes, they might encourage CHC funding and support an application, though in my case, this didn't happen, as it is obviously to their advantage to offlload the home fees elsewhere should they be involved in paying them. They weren't at the time of my husband's CHC application but were at a later date.

At no time, either then, nor at a later CHC application, was I ever asked to produce evidence of my husband's financial position.

 

[miggie]

I have to agree with Lyn and Saffie in that WILLIAMR is giving the wrong impression about CHC funding.
It is absolutely nothing to do with property or finances. It is solely about health needs - not where a person lives or how much money they have.

I went through the procedure three times with my mother (AD). CHC was awarded to her after the third assessment whilst she was in hospital. Sadly she died whilst still in hospital.

 

[LYN T]

Hi Lyn

I have helped in cases 8 in situations where the son daughters were joint owners of the parents house.

I have also helped in 1 case where a daughter had never left home.

In 7 of the cases the parent got CHC funding but did not in 2 of the cases but none of the offspring had to sell the house.

William

I'm sorry William-I'm really not trying to be unkind, but I have to again dispute/question the info that you are giving. This subject is so serious and stressful for so many people that we have to get our facts straight.

If the sons/daughters were joint owners then the house didn't have to be sold for fees.

CHC awarded or not would not have changed that position.

As I have pointed out previously CHC is not awarded because someone will not remove their loved one from Hospital. It is because there is a primary need. You have previously agreed to this point , although you did say this was the case 'officially' and the smell of money is stopping the LA funding/CHC. Are you saying that checklists/assessments and panel were not consulted before CHC was awarded to the people you advised?

This is very strange to me; most people on here are chasing CHC -I know I was. You are saying that you have found a way to bypass the system by in effect 'bed blocking'?

Lyn T

 

[WILLIAMR]

I'm with Lyn on this.
I think you are giving new members the wrong impression about CHC funding.
I just don't see what the connection is with the selling of a house and being awarded CHC funding.
Whether someone has a house to sell or not makes absolutely no difference to the awarding of CHC, i.e. NHS funding.
It is awarded for health not financial reasons.

Also, my husband was on delayed discharge in hospital for some time and I was under considerable pressure to decide on a nursing home quickly and warned that unless I did, he could be placed in a nursing home with a vacancy.
He had been refused CHC funding.

The selling of a house is down to the SS/LA alone. Yes, they might encourage CHC funding and support an application, though in my case, this didn't happen, as it is obviously to their advantage to offlload the home fees elsewhere should they be involved in paying them. They weren't at the time of my husband's CHC application but were at a later date.

At no time, either then, nor at a later CHC application, was I ever asked to produce evidence of my husband's financial position.

I agree the official position is CHC funding has nothing to do with selling a house.
I think in practice the CHC people and the social workers saw the address and £ notes or coins shot across their eyes and it was worth trying to see if the patient would pay.

They came unstuck when the offspring pointed out they were joint owners and in some cases living in the house.

The social workers then tried to say they could downsize as there was no need for 1 person to have a 5+ bedroom house.

Again the offspring refused to sell.

What I think annoyed the social workers was the parent had a half share in a £500,000+ house in all cases but almost no money in cash terms. They could tell they came from expensive addresses by the road names.

In all cases the offspring argued for CHC funding but the social workers kept coming back saying the tax payer should not be funding the care when the person had £250,000 plus worth of assets even after CHC funding had been granted.

In all cases the social worker said it did not look like a CHC case to them.

As I said 7 of them were found to be CHC cases and the council could not take the house in to account for funding purposes even when only social funding was granted.

I suppose it is advantageous for a council to offload the care fees on to the NHS.

It is obviously better if they can offload the care fees unlawfully on to the son / daughter.

William

 

[LYN T]

I have to agree with Lyn and Saffie in that WILLIAMR is giving the wrong impression about CHC funding.
It is absolutely nothing to do with property or finances. It is solely about health needs - not where a person lives or how much money they have.

I went through the procedure three times with my mother (AD). CHC was awarded to her after the third assessment whilst she was in hospital. Sadly she died whilst still in hospital.

Sorry Miggie

I hope this thread is not bringing back bad memories for you-fighting for CHC is just so energy sapping. I'm also sorry about your Mum-I didn't know that she had passed.
I hope you are coping ok'ish. If you can please keep us updated with how you are doing-we would all love to know.

Don't be a stranger-if you don't want to be that is

Take care

Lyn T

 

[miggie]

Thank you Lyn - your kind words are much appreciated.

You are right when you say the fight for CHC is energy sapping to put it mildly!
"Lost" paperwork by CHC assessors, delays of up to six months between checklist and DST completion, Social Workers taking part in the assessment without ever asking to meet my mother, interpretation of needs by assessors that made no sense - I could go on.

Surprisingly, the third DST which took place whilst Mum was in hospital was completed and CHC funding agreed in a very short space of time. Sadly, the cynical part of me sometimes thinks that, as the team were aware that mum was unlikely to live much longer ( she had basically "given up" following a fall in the care home and was refusing food, liquid and medication), it was an easy decision to make.
Mum died on August 11th, just one week after being awarded CHC funding.

As Mum was 97 years old we realise we were very lucky to have her for so long. Also, despite her worsening AD symptoms, she continued to recognise her three children right to the end which was a blessing.
None of this of course makes it any easier to deal with her loss but we do the best we can. Although Mum made little sense in her "conversations" during her last six months or so, I would give anything to go and sit with her again and listen to her wonderful tales of what she'd done and where she'd been (none of which had ever happened of course!).

Even though I no longer have to deal with AD I continue to look at TP most days - it's like having a group of friends so it's nice to keep up to date with events, both good and bad.

Take care

Miggie

 

[Pete R]

My mistake, it was me saying a "top up", the CCg said that "the shortfall will have to be covered with the care home, but it cant be for nursing needs".

No "mistake" on your part at all. A top up is effectively what the CCg are asking you to do and they are very wrong in asking you to do that. They are correct in saying you cannot pay for Nursing care nor can you pay for general care, food or accommodation. Effectively they are asking you and the care home to lie.

If they have a limit they will pay up to then ask them to provide you with details of the homes that are suitable for your Mother in their price range in your area.

If there are non then they are obliged to pay it all. If there are some and you deem them unsuitable/too far away then again they will have to pay.

Don't give in that is a lot of "top up" to pay.

 

[Wirralson]

I agree the official position is CHC funding has nothing to do with selling a house.
I think in practice the CHC people and the social workers saw the address and £ notes or coins shot across their eyes and it was worth trying to see if the patient would pay.

They came unstuck when the offspring pointed out they were joint owners and in some cases living in the house.

The social workers then tried to say they could downsize as there was no need for 1 person to have a 5+ bedroom house.

Again the offspring refused to sell.


What I think annoyed the social workers was the parent had a half share in a £500,000+ house in all cases but almost no money in cash terms. They could tell they came from expensive addresses by the road names.

In all cases the offspring argued for CHC funding but the social workers kept coming back saying the tax payer should not be funding the care when the person had £250,000 plus worth of assets even after CHC funding had been granted.

In all cases the social worker said it did not look like a CHC case to them.

As I said 7 of them were found to be CHC cases and the council could not take the house in to account for funding purposes even when only social funding was granted.

I suppose it is advantageous for a council to offload the care fees on to the NHS.

It is obviously better if they can offload the care fees unlawfully on to the son / daughter.

William

Sorry William but this is confusing the picture. The LA has no financial involvement in CHC when granted - its only role is in providing evidence where appropriate of the patient's needs. If CHC is not granted, the LA is involved in accepting the patient and that is where CRAG and the funding issue arise. The situations you describe make perfect sence in cases where CHC has been refused or not appleid for and LA care was involved. And the £ sign across the eyes is irrelevant - if CHC is awarded, the LA doesn;t pay, so it's happy. If CHC is refused, the LA is legally obliged to charge for the services provided, hence the actions you describe. The "CHC people" (the CCG CHC team) have nothing to do with individuals' funding or assets. It's irrelevant to them. Once CHC has been granted, the social workers are out of the loop until CHC is reviewed. Now if reviewed, and removed, CRAG kicks in, so the social workers may be anticipating this to a certain extent.

W

 

[WILLIAMR]

I'm sorry William-I'm really not trying to be unkind, but I have to again dispute/question the info that you are giving. This subject is so serious and stressful for so many people that we have to get our facts straight.

If the sons/daughters were joint owners then the house didn't have to be sold for fees.

CHC awarded or not would not have changed that position.

As I have pointed out previously CHC is not awarded because someone will not remove their loved one from Hospital. It is because there is a primary need. You have previously agreed to this point , although you did say this was the case 'officially' and the smell of money is stopping the LA funding/CHC. Are you saying that checklists/assessments and panel were not consulted before CHC was awarded to the people you advised?

This is very strange to me; most people on here are chasing CHC -I know I was. You are saying that you have found a way to bypass the system by in effect 'bed blocking'?

Lyn T

Hi Lyn

I have not found away to bypass the system.
Even though no financial assessment was done in most cases the council could tell by the addresses the houses were worth £500k plus and they probably know from the start it is a CHC funding case.
I think as the social workers work in the same office as the CHC people they arrange for the social worker to suggest self funding.
As soon as the son / daughter says they are part owners of the house they suggest they downsize or in a case like mine they try to convince the relative the patient owns the property even though it belonged to me.
When they get to a point when the son / daughter will not be conned the CHC funding is offered.
After all how did my step mother get offered CHC funding within hours when they realised myself and the son were basically trouble makers and why did one social worker not want me in a meeting?.

William

 

[LYN T]

Hi Lyn

I have not found away to bypass the system.
Even though no financial assessment was done in most cases the council could tell by the addresses the houses were worth £500k plus and they probably know from the start it is a CHC funding case.
I think as the social workers work in the same office as the CHC people they arrange for the social worker to suggest self funding.
As soon as the son / daughter says they are part owners of the house they suggest they downsize or in a case like mine they try to convince the relative the patient owns the property even though it belonged to me.
When they get to a point when the son / daughter will not be conned the CHC funding is offered.
After all how did my step mother get offered CHC funding within hours when they realised myself and the son were basically trouble makers and why did one social worker not want me in a meeting?.

William
William

I expect your SM was a clear cut case because of her behaviour. Or were they aware that her prognosis had got to the terminal state-which is when it is awarded automatically. My Husband's CHC was awarded within an hour due to his behaviour being so extreme. I was also not invited to a meeting-it was when the checklist took place. Pete's SW told me he wouldn't get CHC funding-and he hadn't seen him for absolutely ages. I complained about him as he should be neutral.I don't class myself as a 'trouble maker' but I have learnt to fight Pete's corner. Things can be achieved that way.

It appears, William, that we will have to agree to disagree on the points that you have raised. I think that you are wrong and have somehow got confused between the various agencies-and the way they work and how they are connected. I would also be wary about taking your advice in not looking for a CH/NH for their loved one. Digging one's heels in can cause havoc.

Like Saffie I felt the pressure in finding a CH for my Husband-I didn't like any of the ones suggested by the SW. As a matter of fact I raised a potential safeguarding issue as I was being directed to CH's which had a staff ratio of 1 carer to 10 residents. I was told by Pete's consultant that he needed 24 hour care with a lot of 1 to 1 input.At no stage did I want to keep Pete in the NHS Mental Health Unit-saving money, or being difficult was not on my agenda. As far as I was concerned Pete deserved the best care that I could find.This I did -with a great deal of luck and a recently vacated bed.

I'm really concerned that TP members will take a 'stick' not a 'carrot' attitude if they follow your advice-if any fellow TP'ers read this please adhere to CRAG rules to find out your rights and read the CHC guidelines. Also it may be relevant to guide people to Wirralson and Saffie's posts which explain procedures so much better than I can.

We all know that CHC guidelines are mis-understood, or ignored, by some assessors-and that is not right. Dementia sufferers are shunted to the back of the queue when they so deserve the right to CHC-but we have to play them at their own game and stick to the rules that CCG's often ignore. We have to play the game and keep plugging away. By stating there is an agenda, which isn't relevant, in my opinion is less than helpful

Take care everyone-fight the fight

Lyn T

 

[WILLIAMR]

Sorry William but this is confusing the picture. The LA has no financial involvement in CHC when granted - its only role is in providing evidence where appropriate of the patient's needs. If CHC is not granted, the LA is involved in accepting the patient and that is where CRAG and the funding issue arise. The situations you describe make perfect sence in cases where CHC has been refused or not appleid for and LA care was involved. And the £ sign across the eyes is irrelevant - if CHC is awarded, the LA doesn;t pay, so it's happy. If CHC is refused, the LA is legally obliged to charge for the services provided, hence the actions you describe. The "CHC people" (the CCG CHC team) have nothing to do with individuals' funding or assets. It's irrelevant to them. Once CHC has been granted, the social workers are out of the loop until CHC is reviewed. Now if reviewed, and removed, CRAG kicks in, so the social workers may be anticipating this to a certain extent.

W

Wirralson

I agree that what you are saying is the official position.
All I can say is the social worker battled hard in all cases to get the offspring to sell their jointly owned house to pay for the parents care and did not refer the matter for CHC funding until they were totally convinced the house sale would not happen.
This has been my experience around my area.
Probably social workers take a different attitude around your area.

William

 

[LYN T]

No "mistake" on your part at all. A top up is effectively what the CCg are asking you to do and they are very wrong in asking you to do that. They are correct in saying you cannot pay for Nursing care nor can you pay for general care, food or accommodation. Effectively they are asking you and the care home to lie.

If they have a limit they will pay up to then ask them to provide you with details of the homes that are suitable for your Mother in their price range in your area.

If there are non then they are obliged to pay it all. If there are some and you deem them unsuitable/too far away then again they will have to pay.

Don't give in that is a lot of "top up" to pay.

Thank you for clarifying this Pete' I have never heard the terminology 'recreational services'. It seems like a bit of a con. I agree that it is a lot of money

 

[Saffie]

I agree that what you are saying is the official position.
All I can say is the social worker battled hard in all cases to get the offspring to sell their jointly owned house to pay for the parents care and did not refer the matter for CHC funding until they were totally convinced the house sale would not happen.
This has been my experience around my area.
Probably social workers take a different attitude around your area.

It is not up SWs who apply for CHC funding nor who warrants it. In fact it is usually, the hospital concerned that applies because it is given for health rather than social needs. The SW will have input but they cannot influence the eventual outcome. In both my husband's applications, the Checklist was completed by my husband's nurse with some input from myself.
I do think the case of your SM was possibly coincidence.

CHC funding rules are pretty much controlled by the completion of the CHC tool wherever one lives though, of course this is open to differing interpretations.
I believe CRAG is set in stone nationally.

 

[WILLIAMR]

I expect your SM was a clear cut case because of her behaviour. Or were they aware that her prognosis had got to the terminal state-which is when it is awarded automatically. My Husband's CHC was awarded within an hour due to his behaviour being so extreme. I was also not invited to a meeting-it was when the checklist took place. Pete's SW told me he wouldn't get CHC funding-and he hadn't seen him for absolutely ages. I complained about him as he should be neutral.I don't class myself as a 'trouble maker' but I have learnt to fight Pete's corner. Things can be achieved that way.

It appears, William, that we will have to agree to disagree on the points that you have raised. I think that you are wrong and have somehow got confused between the various agencies-and the way they work and how they are connected. I would also be wary about taking your advice in not looking for a CH/NH for their loved one. Digging one's heels in can cause havoc.

Like Saffie I felt the pressure in finding a CH for my Husband-I didn't like any of the ones suggested by the SW. As a matter of fact I raised a potential safeguarding issue as I was being directed to CH's which had a staff ratio of 1 carer to 10 residents. I was told by Pete's consultant that he needed 24 hour care with a lot of 1 to 1 input.At no stage did I want to keep Pete in the NHS Mental Health Unit-saving money, or being difficult was not on my agenda. As far as I was concerned Pete deserved the best care that I could find.This I did -with a great deal of luck and a recently vacated bed.

I'm really concerned that TP members will take a 'stick' not a 'carrot' attitude if they follow your advice-if any fellow TP'ers read this please adhere to CRAG rules to find out your rights and read the CHC guidelines. Also it may be relevant to guide people to Wirralson and Saffie's posts which explain procedures so much better than I can.

We all know that CHC guidelines are mis-understood, or ignored, by some assessors-and that is not right. Dementia sufferers are shunted to the back of the queue when they so deserve the right to CHC-but we have to play them at their own game and stick to the rules that CCG's often ignore. We have to play the game and keep plugging away. By stating there is an agenda, which isn't relevant, in my opinion is less than helpful

Take care everyone-fight the fight

Lyn T

Hi Lyn

I agree my step mother was a clear case for CHC funding because of her behaviour.
Even the social worker said she could kill a child because of her strength.
I dug my heals in re the bungalow as it did not belong to my step mother.

We were advised by the social worker not to go looking for homes our self as she was going to be difficult to place.

We did look at the 2 homes which said they were prepared to take her.

It was clear I was in no way liable for her care fees but the social worker did not agree.

We did not know about a prognosis when my step mother was in hospital.

The nurse at the home said she was unlikely to be alive in 6 months time.

The nurse said she was surprised she passed away a week later but her death did not relate to the dementia.

William

 

[Lena99]

Unfortunately I didn't know about the broadcast about CHC funding and didn't hear it.

I am looking for any help and advice I can get on how to win an appeal for CHC funding for my husband. I have phoned everywhere I can think of for help and no one can give me any advice or help. We haven't been given a social worker as we are still on the waiting list so if anyone can help I would be very grateful.

My husband has Parkinson's, dementia and psychosis, he can't walk or feed himself, has grade 3-4 bed sores and so is mostly confined to bed or in a chair with an air cushion for about 1-2 hours a day. He was in hospital for 7 weeks after a fall and they found he had an infection, he then had two more infections while he was there, he was catheterised for the first time while in hospital and they tried to remove it, three times but he couldn't wee and it had to be put back and is now permanent, he has also had bladder wash-outs and wears a nappy. He was coming home with me but they told me that because he had refused medication at times and was abusive to the nurses saying that they were trying to kill him and also could lash out, I wouldn't be able to cope and said he needed 24/7 nursing care and two people to move him and change his position in bed. He was assessed for CHC but was refused so I put in an appeal. They then moved him to a transition bed at a nursing home until the appeal which is late October. Now I've appealed I'm not sure how to get his case and arguments together to be good enough so that they will pass him this time! From what I've seen and heard about CHC the patient has to be practically at death's door for them to get the funding and it's too late then........

Does anyone have any advice please?

 

[nita]

Have a look at the Checklist and Decision Support Tool which are used in the assessment (the checklist first - if he gets a certain number of As or Bs this will trigger a full assessment). The checklist and assessment are done by a nurse assessor and I imagine someone from the care home will be able to speak about the care he needs.

It looks complicated but it is looking at certain areas of health needs - mobility, cognition, etc. and assessing the nature of the person's needs and how complex, intense and unpredictable they are. It sounds as if he scores highly on all three.

They go through each of the categories one by one and you have a chance to give your input. You need to bring up the points you have made here about incontinence, hallucinations and his aggressive behaviour and anything else you can think of under the different categories. Point out the severity of the behaviour, etc. and how one thing impacts on another, for instance, how he reacts if his catheter needs changing, whether any medication he is given is effective or if it has side-effects that impact on his other illnesses; his refusal to take medication, therefore worsening his hallucinations; what effect his Parkinson's has on him. Make notes beforehand and go prepared.


https://www.gov.uk/government/uploa..._data/file/213138/NHS-CHC-Checklist-FINAL.pdf

https://www.gov.uk/government/uploa...upport-Tool-for-NHS-Continuing-Healthcare.pdf