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

[cliveo]

Just passing this information on may be of interest to many on this forum.

NHS Continuing Healthcare to be Featured on BBC Radio 4’s Inside Health Programme – Tuesday 30th September, 9pm

The programme will highlight growing concerns about delays in assessment timescales and discuss recent NHS statistics which show that seven years after the introduction of national guidance, eligibility for continuing healthcare remains a postcode lottery

 

[WILLIAMR]

Just passing this information on may be of interest to many on this forum.

NHS Continuing Healthcare to be Featured on BBC Radio 4’s Inside Health Programme – Tuesday 30th September, 9pm

The programme will highlight growing concerns about delays in assessment timescales and discuss recent NHS statistics which show that seven years after the introduction of national guidance, eligibility for continuing healthcare remains a postcode lottery

Hi Cliveo

I will try to listen to this tonight.
My experience is Social Services try to get the family to pay, then social funding is offered and CHC funding is only offered when they realise that getting money out of the family is like getting blood out of a stone.

William

 

[LYN T]

Hi Cliveo

I will try to listen to this tonight.
My experience is Social Services try to get the family to pay, then social funding is offered and CHC funding is only offered when they realise that getting money out of the family is like getting blood out of a stone.

William

I can't agree with this William

CHC is awarded after a thorough checklist/assessment and then normally a decision being made at panel level. If everyone who refused to pay on principal then everyone would have a 'get out clause' and CHC would be awarded left, right and centre.Social funding is awarded to everyone whose assets cannot meet the full fees-but they have to surrender their state pension/occupational pension (only half if a surviving spouse is still alive) and a proportion of their savings.

I believe (correct me if I'm wrong) that your Stepmother was awarded CHC because of her needs. Like my Husband she had behaviour problems which scores highly.

All that said I agree very much with Cliveo that CHC has a huge 'postcode lottery' element and some assessors don't know their own guidelines. In my Husband's case I appealed against the original checklist because the narrative as to why he was turned down mentioned Peter T in two paragraphs and another Peter (A) in the next two paragraphs. No dignity shown there then

I will listen to the programme because although Pete has been awarded CHC the fight for EVERYONE to have fair and just assessments MUST go on.

Have good days everyone

Lyn T

 

[WILLIAMR]

I can't agree with this William

CHC is awarded after a thorough checklist/assessment and then normally a decision being made at panel level. If everyone refused to pay on principal then everyone would have a 'get out clause' and CHC would be awarded left, right and centre.Social funding is awarded to everyone whose assets cannot meet the full fees-but they have to surrender their state pension/occupational pension (only half if a surviving spouse is still alive) and a proportion of their savings.

I believe (correct me if I'm wrong) that your Stepmother was awarded CHC because of her needs. Like my Husband she had behaviour problems which scores highly.

All that said I agree very much with Cliveo that CHC has a huge 'postcode lottery' element and some assessors don't know their own guidelines. In my Husband's case I appealed against the original checklist because the narrative as to why he was turned down mentioned Peter T in two paragraphs and another Peter (A) in the next two paragraphs. No dignity shown there then

I will listen to the programme because although Pete has been awarded CHC the fight for EVERYONE to have fair and just assessments MUST go on.

Have good days everyone

Lyn T

Hi Lyn

What happened in my step mother's case was the social worker advised me that the bungalow she was living in would have to be sold to pay the fees in spite of the fact my mother left me her half in when she passed away in 2003 and my father left me his half on condition that I let my step mother live in it until my step mother's death or until she entered care.
The social worker said that because my father married her all of the bungalow reverted to him and it went to her on my father's death whatever the wills said.
This was totally incorrect and I just said the council would have to take me to court if it wanted the bungalow sold to pay her fees. The bungalow was totally registered in my name.

At a second meeting the social worker said the council would grant social funding but a top up of £1.000+ would be required a month as no home in the area would take her at the council's usual rate.
She said if the son could not pay I would be required to pay as the step son.
Again we refused to pay and the social worker said she could be let out and she could kill a child and we would be responsible.
Again we refused to pay and after a lot of argument CHC funding was granted.

We made a complaint to the council and it admitted we were given wrong advice.
The council did say the ownership situation of the bungalow was unusual and social workers are not lawyers.
The council said training will be taking place to avoid this type of situation happening in the future and will be completed by the end of 2014 at the latest.
As the social worker looked very middle aged I would be surprised if she had never come across this type of situation before.
Another thing the council said that before a sale happened the case would have been referred to the Care Home Contributions Teem and the sale would have been stopped.
The problem there is if I had agreed to sell the bungalow and paid would the care home contributions teem had seen the case?.

What really concerns me is have people paid in the past who should have not and their relatives have been deprived of their inheritance or like in my case been forced to sell property the resident did not even own.

William

 

[LYN T]

Hi Lyn

What happened in my step mother's case was the social worker advised me that the bungalow she was living in would have to be sold to pay the fees in spite of the fact my mother left me her half in when she passed away in 2003 and my father left me his half on condition that I let my step mother live in it until my step mother's death or until she entered care.
The social worker said that because my father married her all of the bungalow reverted to him and it went to her on my father's death whatever the wills said.
This was totally incorrect and I just said the council would have to take me to court if it wanted the bungalow sold to pay her fees. The bungalow was totally registered in my name.

At a second meeting the social worker said the council would grant social funding but a top up of £1.000+ would be required a month as no home in the area would take her at the council's usual rate.
She said if the son could not pay I would be required to pay as the step son.
Again we refused to pay and the social worker said she could be let out and she could kill a child and we would be responsible.
Again we refused to pay and after a lot of argument CHC funding was granted.

We made a complaint to the council and it admitted we were given wrong advice.
The council did say the ownership situation of the bungalow was unusual and social workers are not lawyers.
The council said training will be taking place to avoid this type of situation happening in the future and will be completed by the end of 2014 at the latest.
As the social worker looked very middle aged I would be surprised if she had never come across this type of situation before.
Another thing the council said that before a sale happened the case would have been referred to the Care Home Contributions Teem and the sale would have been stopped.
The problem there is if I had agreed to sell the bungalow and paid would the care home contributions teem had seen the case?.

William

William-I'm not disputing what went on in your Step-Mothers case-how could I -I wasn't there. I'm disputing your original statement 'CHC funding is only offered when they realise that getting money out of the family is like getting blood out of a stone.' This is simply not right.

You were obviously advised wrong by the SW-it shouldn't have happened, and thank goodness you fought your corner. If CHC funding hadn't kicked in you still couldn't be forced to pay. The local authority would have used funds from your SM's assets/pensions and funded the rest.

Lyn T

 

[WILLIAMR]

William-I'm not disputing what went on in your Step-Mothers case-how could I -I wasn't there. I'm disputing your original statement 'CHC funding is only offered when they realise that getting money out of the family is like getting blood out of a stone.' This is simply not right.

You were obviously advised wrong by the SW-it shouldn't have happened, and thank goodness you fought your corner. If CHC funding hadn't kicked in you still couldn't be forced to pay. The local authority would have used funds from your SM's assets/pensions and funded the rest.

Lyn T

Hi Lyn

You are correct but what would have happened if I did not know the law and just paid?.

I have heard conversations where a woman has said that she has found a man with a nice house but the problem is the daughter is living in it and the mother's half was left to the daughter.

The other woman replied if she married the father the house would revert to him and the daughter would have to leave.

This is not correct but I think people have misconceptions re inheritance.

I did find out that the father was not pleased when he found the woman wanted the house and their friendship was terminated very quickly.

William

 

[Rageddy Anne]

It's so unfair that people who are already overwhelmed just caring for someone with Dementia should have to cope with these matters.

 

[WILLIAMR]

It's so unfair that people who are already overwhelmed just caring for someone with Dementia should have to cope with these matters.

Hi Rageddy Anne

I really think councils try it on and hope some of the relatives pay when they don't have to.
In other cases the son / daughter have been living with the parent as a joint owner and have been told they would have to downsize which is not true in accordance with Age Concern factsheet 38 and CRAG.
I have helped in 9 cases like this involving 4 different councils.
When we complained in 5 of the cases the councils said it was only a suggestion and in 4 cases we were told Social Workers are not lawyers. Only 1 council has stated that it is running training on property ownership law but it may not be completed until the end of 2014 as they can not train all social workers at the same time.
Probably this is understandable.
I did suggest to the other councils they should run training re property law but they just said they had not got the resources.

William

 

[Saffie]

William, your argument has not anything to do with CHC funding which the OP said was the subject of a radio programme this evening. You were fortunate to have eventually succeeded in being granted the funding but it had nothing to do with your step-mother's bungalow nor the vagaries of the LA. The LA do not decide who warrants CHC funding.

 

[WILLIAMR]

William, your argument has not anything to do with CHC funding which the OP said was the sybject of a radio programme this evening. You were fortunate to have eventually succeeded in being granted the funding but it had nothing to do with your step-mother's bungalow nor the vagaries of the LA. The LA do not decide who warrants CHC funding.

Saffie

I can only agree with what you are saying.
What happens in our local hospitals is the CHC and social workers work in the same office and it appears that the social workers try to get the families to pay by misguiding them and CHC funding is only granted as a last resort.
I was not fortunate in my step mother being granted the funding.
The bungalow belonged to me so it could not be taken for my step mother's care.
Probably I was fortunate the matter did not get to a solicitors stage.
I could easily have ran up a large bill and I doubt if the council would have paid it.

William

 

[LYN T]

Saffie

I can only agree with what you are saying.
What happens in our local hospitals is the CHC and social workers work in the same office and it appears that the social workers try to get the families to pay by misguiding them and CHC funding is only granted as a last resort.
I was not fortunate in my step mother being granted the funding.
The bungalow belonged to me so it could not be taken for my step mother's care.
Probably I was fortunate the matter did not get to a solicitors stage.
I could easily have ran up a large bill and I doubt if the council would have paid it.

William

William

I'm afraid that I'm not making myself clear to you.

CHC is not 'awarded as a last resort'. I cannot stress enough that CHC is awarded because the Dementia sufferer has what is considered a Primary need. This is determined by a checklist/assessment/panel decision. I'm not saying that these guidelines are always followed. I'm sorry to be blunt but you are mis-leading many TPer's over this. Whilst I'm sure many (including myself) find your comments interesting re. the now infamous 'Bungalow Incident', you are, in my opinion, mis-leading many. CHC is a stressful business which too few receive, but it is never, ever awarded because relatives can't, or won't, pay top up fees.

When I was told Pete needed 24/7 care I found him a marvelous CH which I told the SW/LA about. I knew that Pete would be self funding for a while, but I also knew the LA would have to step in after a short time. The SW told me they would do as they had, by law, to find appropriate care. Pete's needs were so great that many homes wouldn't take him. There was no mention of CHC kicking in just because he wouldn't be self funding for long

Lyn T

 

[fizzie]

Would it be possible for you to summarise under what sort of circs CHC funding is awarded...most people with dementia have dementia as a primary need....my ma is physically ok but mentally out of the park but I cannot get my head around the funding at all....at the moment she is at home and I am supporting but not sure how long I can survive this my stress levels are at an all time high

 

[WILLIAMR]

William

I'm afraid that I'm not making myself clear to you.

CHC is not 'awarded as a last resort'. I cannot stress enough that CHC is awarded because the Dementia sufferer has what is considered a Primary need. This is determined by a checklist/assessment/panel decision. I'm not saying that these guidelines are always followed. I'm sorry to be blunt but you are mis-leading many TPer's over this. Whilst I'm sure many (including myself) find your comments interesting re. the now infamous 'Bungalow Incident', you are, in my opinion, mis-leading many. CHC is a stressful business which too few receive, but it is never, ever awarded because relatives can't, or won't, pay top up fees.

When I was told Pete needed 24/7 care I found him a marvelous CH which I told the SW/LA about. I knew that Pete would be self funding for a while, but I also knew the LA would have to step in after a short time. The SW told me they would do as they had, by law, to find appropriate care. Pete's needs were so great that many homes wouldn't take him. There was no mention of CHC kicking in just because he wouldn't be self funding for long

Lyn T

Hi Lyn

I agree what you are saying is the official situation. About 50 homes would not take my step mother. Obviously she would have not got CHC funding if she did not have a primary health need.
What I am saying is it appears in our area they are not following the procedure even with social funding and as soon as social services smell money they try to get the owner of the money to pay rather than grant social funding or asking for a CHC funding assessment to be done.
Even after my step mother was granted CHC funding the social worker approached me and said it was not right the tax payer should pay as I had a house and a bungalow at the time.

As the programme has just said it can be a long difficult process getting CHC funding which people at work do not have the time to pursue.

I agree it is all about money rather than taking health needs in to account.

What I find amazing was why did the social worker say I should pay when I owned the bungalow?.
It would surprise me if any step son / daughter would pay but I suppose some would or Social Services would not demand payment.

William

 

[leedsfan]

Round and round we go

Just passing this information on may be of interest to many on this forum.

NHS Continuing Healthcare to be Featured on BBC Radio 4’s Inside Health Programme – Tuesday 30th September, 9pm

The programme will highlight growing concerns about delays in assessment timescales and discuss recent NHS statistics which show that seven years after the introduction of national guidance, eligibility for continuing healthcare remains a postcode lottery

Thank you for highlighting this programme Cliveo.

Will not go into detail here, lets just say I am well and truly in the thick of it due to the inept local CCG I have the misfortune to be currently dealing with. As such I am devouring everything with a NHS/CHC label.

I found the radio discussion to be not very useful for myself as I am pretty well informed, but I suppose any highlighting of the situation can't be bad. I was left feeling, as usual, a bit frustrated and sad for everyone having to fight their corner.

We just go round and round. I've been watching some of our MP's pleading for our votes, I personally would vote for the Monster Raving Looney Party if they'd promise a fairer system!!

I'm ready for the next stage of appeal following what I fear will be another refusal of funding for my Dad. BRING IT ON.

Jane

 

[WILLIAMR]

Thank you for highlighting this programme Cliveo.

Will not go into detail here, lets just say I am well and truly in the thick of it due to the inept local CCG I have the misfortune to be currently dealing with. As such I am devouring everything with a NHS/CHC label.

I found the radio discussion to be not very useful for myself as I am pretty well informed, but I suppose any highlighting of the situation can't be bad. I was left feeling, as usual, a bit frustrated and sad for everyone having to fight their corner.

We just go round and round. I've been watching some of our MP's pleading for our votes, I personally would vote for the Monster Raving Looney Party if they'd promise a fairer system!!

I'm ready for the next stage of appeal following what I fear will be another refusal of funding for my Dad. BRING IT ON.

Jane

Hi Jane

I have not been involved in any appeals but I think it is worrying that the appeals are taking so long.
I know several are taking a year plus.
In most of the cases I have helped with the patient has died within that time.
Really I think the NHS is dragging things out and trying to grind the relatives down so they give up in the end.
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.
If the NHS had a case I am sure it would have pursued the relatives for the money but I think it realised it did not.

William

 

[LYN T]

Hi Jane

I have not been involved in any appeals but I think it is worrying that the appeals are taking so long.
I know several are taking a year plus.
In most of the cases I have helped with the patient has died within that time.
Really I think the NHS is dragging things out and trying to grind the relatives down so they give up in the end.
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.
If the NHS had a case I am sure it would have pursued the relatives for the money but I think it realised it did not.

William

William

Sorry confused again

Who did the son/daughter refuse to pay?

 

[WILLIAMR]

William

Sorry confused again

Who did the son/daughter refuse to pay?

Hi Lyn

The son was with me when I was told the bungalow would have to be sold.
I just refused to let that happen.

The next thing that was said social funding could be provided but there was no home at the LA usual rate which would take my step mother and myself and the son would need to find a top up of £1,000 per month between us.

I just said I am not paying as my step mother was nothing to do with me and the son said he will not pay.

The social worker then asked us what was my step mother going to do if we refused to pay and said she could be let out and she could kill a child in view of her great strength. She said if that happened we would be responsible.

We just said we are not paying and walked out knowing she was in a safe place and the hospital could not turn her out.

We also said we would involve a solicitor.

Later that day we had a call and we were asked to return to the hospital the next morning. I asked if we needed a solicitor but the person said come in and hear what they had to say and get a solicitor involved if we were not satisfied.

We saw the CHC nurse and she said the matter had been re considered and CHC funding was being granted for 3 months and it would then be reviewed.

When we visited that evening there was a form by the bed addressed to me in which I was agreeing to pay the care fees if NHS funding was not approved at any time.

I just telephoned the number stated and said I am not signing that form as my step mother was not a relative as far as I was concerned and we heard nothing else.

Several homes came to assess my step mother for about 3 further weeks but none would take her.

During those 3 weeks I was approached by the social worker several times saying it was wrong the NHS should pay as I had a house and a bungalow.

A home was then found but we were then advised a special meeting would have to take place and this could not take happen for 2 weeks and we were told the room could be lost if we waited for the meeting to take place but she could go immediately if we paid.

Again I refused to pay.

Three days later we had a call saying she was being sent to the home that morning.
I went to the hospital to collect her things and to see her on to the hospital ambulance and the son went to the home.

As it happened I got there about 5 minutes before the ambulance and went to put her property in the room.

We were given a list of her needs in the home and she had her priority needs satisfied by that evening.

Over the week we got her non priority items.

We finally got her a drinks fridge and TV and was about to take them to the home a week later which were low priority / optional items on the list.

Sadly we then had a call saying she was ill and they had dialled 999 but asked us to not set out as she could have been taken to 1 of 3 hospitals.

When we knew the hospital she was going to we went there.

Sadly my step mother passed away in hospital later that day and the TV fridge were still in my car.

William

 

[superspecial]

CHC award

I 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.

 

[LYN T]

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.)

 

[LYN T]

I 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.

It was my understanding that once CHC funding has been awarded no-one is allowed to contribute extra apart from toiletries/glasses/chiropody etc. The CCG are within their rights to move a person to a less expensive home BUT if an appropriate home is not found then CHC has to cover what is available. DO NOT SIGN ANYTHING WITH THE CH. I'm sure top ups are illegal if CHC is awarded

I hope someone pops along soon to give you the correct advice.

Take care

Lyn T