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

[Saffie]

the nurse at the Care Home said that some of the approvals came through after the patient had died which, as she said, saves the LA a lot of money.

Hello again Lena
I think that earlier posts here have caused confusion.

Not awarding CHC funding will not save the LA any money at all as it is the NHS which pays it.
Whereas, when CHC funding is awarded, if the LA are contributing to the care fees, it will save them that contribution. If self-funding, then it has no impact on the LA at all.

CHC can be awarded if someone has died. It just has to be applied for retrospecively.
A number of TP members have been involved in such applications and have won their case.

 

[Saffie]

My experience is that the two agencies do share the same offices and have the same goals. Which is to find someone else to pay.

However, not the same criteria and not representing the same authorities - hardly agencies - and the money is not coming the same resource.
CHC is being paid by the government via the NHS and the other by our local councils.

The whole point of what I and others are saying on here is that while nobody doubts that a member is obviously experienced in dealing with the LA and it trying to force people to sell their homes, it is confusing to associate this with the awarding of CHC funding as it has nothing to do with it.
At the risk of being repetitive, CHC is concerned solely with a person's health as it is organised by the NHS and has nothing to do with their financial position.

I cannot see how this thread can be helping anyone who is starting with the CHC application.

 

[LYN T]

Wlliam

I do accept that, in the scenarios that you have comprehensively outlined, that you were given incorrect advice; however, I have to say that repeatedly throughout this thread you have also posted incorrect and contradictory narrative i.e. linking CHC to finances and property ownership. This is why I question what you have written.

I would hate members, particularly new ones who are at the start of applying for CHC, to get the wrong idea. We are here to help-some more comprehensively than others- but we have to stick to the facts regarding CHC. It is so important that people follow the guidelines if they have to appeal etc. Whether assessors follow the guidelines is, of course, another matter.

As mentioned in my last post one incidence of violence would not lead to a 'positive' score on a checklist (someone correct me please if I'm wrong). This gives false 'hope' that CHC is awarded for one off incidents. In my experience that is not so. Assessment is taken for a number of scores in quite a few domains.

Lyn

Repeated bolding

I profoundly apologise-I obviously did not make myself clear. The facts are; CHC is assessed and given (if deemed needed) by the CCG and CHC. Not Social workers or the LA. Neither are personal finances taken into account (funds/property)

The domain for 'Behaviour' clearly states that for the lowest score to be obtained the following criteria needs to be met;

Some incidents of ‘challenging’
behaviour. A risk assessment indicates
that the behaviour does not pose a risk
to self others or property or a barrier to intervention. The person is
compliant with all aspects of their care.

The one single incident I had responded to in the TP'ers post would not have led to CHC being awarded. No one I know, be it carers in my Husband's CH, or the relatives of the residents, would be advised that CHC should be awarded for a single act of aggression.

At no time did I dispute that the TP'er had not experienced what he had recounted.

I simply pointed out that he was confusing the issue with regards to how CHC is awarded.

I shall try to be more articulate in future if it helps other TP'ers understand my point of view.

I consider myself to be roundly told off-I'm begging for forgiveness as I
type

I hope your days have been ok'ish

Take care

Lyn T

 

[Pete R]

However, not the same criteria and not representing the same authorities - hardly agencies - and the money is not coming the same resource.
CHC is being paid by the government via the NHS and the other by our local councils.

You would expect so wouldn't you. However not my experience.

The whole point of what I and others are saying on here is that while nobody doubts that a member is obviously experienced in dealing with the LA and it trying to force people to sell their homes, it is confusing to associate this with the awarding of CHC funding as it has nothing to do with it.
At the risk of being repetitive, CHC is concerned solely with a person's health as it is organised by the NHS and has nothing to do with their financial position.

I hate to repeat myself but you would expect so wouldn't you. But not my experience.

I cannot see how this thread can be helping anyone who is starting with the CHC application.

I can. It is knowing that the set down rules are not always, if ever, applied by any agency and sometimes having knowledge of anothers experience can help with the fight.

 

[LYN T]

Pete R

In response to your comments re Saffie's posts

Perhaps you could outline your experiences i.e when you have come across CHC not being paid by the Government via the NHS, and your other experience with the CHC/CCG taking into account financial concerns as well as health.

Finally I am SO pleased that you have found this thread helpful-personally I would have been knocking on the wrong doors if I had followed some of the advice/comments.

Lyn T

 

[jaymor]

Utopia

5 years ago, 4 years after diagnosis we were given a SW who came to assess my husband's needs and to assess what help I needed to look after my husband as it was becoming difficult caring on my own. He thought day care and passed on his findings. He never asked about our finances, why should he?

A lady came to assess my husband's finances, she took into account his income and expenditure and arrived at a figure we would have to pay. We agreed and the SW then contacted the day centre and arranged for 2 days a week.

Fast forward 2 years and my husband was admitted, not sectioned, into an assessment unit. After 3 weeks there we were told his needs were complex and coming home would not be an option. We listened to their reasons and agreed to look for nursing homes. Week 6 saw us sitting with the staff of the unit talking of their findings whilst observing my husband. We were asked our opinions of their findings. Copious amount of notes were made and at the end of a very long afternoon we were told that the findings would be passed to panel. what panel was my question. CHC panel, I had no idea that the previous few hours had been spent assessing for CHC. They explained it all to us, each domain and their scoring had to be accompanied by a very detailed description of behaviour and how they had come to their decision as to the score and then passed on.

Two weeks later I received a call saying CHC had been granted but the level of care was now higher than EMI nursing so the 20+ homes we had already looked at were not suitable. My husband has now had CHC for 2 years and has 1:1 care.

So the SW, staff in the assessment unit or CHC had no knowledge of my husband's finances, no one asked. No one asked the value of our home or who infact owned it. He was given CHC because his medical needs warranted it. He was not in the last few weeks of his life, he was active.

He is now non weight bearing, has to be hoisted, fed and is doubly incontinent.

So my experience was excellent, he was awarded CHC without my asking, which as I had no idea it existed was lucky so maybe As my heading says, we live in Utopia, now that will have an expensive post code.

It is very sad that so many people have to fight to be looked at for this funding, maybe each NHS has differing amounts available for CHC , but they should all adhere to the rules and not interpret them to their own advantage. The local authorities work the same. Our LA charges £135 per week towards respite, 4 miles up the road, the next LA charges £70 per week towards respite, but that's another story.

I have to agree with Saffie and LynT that we are clouding CHC with issues that do not in anyway apply to CHC funding

 

[LYN T]

It's good to hear about a positive experience Jay

Mine wasn't too bad apart from when Pete was in an assessment unit and he didn't pass the checklist stage. That was when he was half mixed up with another patient

Ah! That Utopia address! Can you imagine how high the Council Tax would be?

Take care

Lyn T

 

[Saffie]

You would expect so wouldn't you. However not my experience.
I hate to repeat myself but you would expect so wouldn't you. But not my experience.

I can. It is knowing that the set down rules are not always, if ever, applied by any agency and sometimes having knowledge of anothers experience can help with the fight.

My bolding.

That is without doubt very true but only in so far as it is relevant to the subject.
If it isn't, it's of no value whatsoever.
In view of this, I now intend sitting on my hands to prevent my fingers doing any further talking.

 

[WILLIAMR]

5 years ago, 4 years after diagnosis we were given a SW who came to assess my husband's needs and to assess what help I needed to look after my husband as it was becoming difficult caring on my own. He thought day care and passed on his findings. He never asked about our finances, why should he?

A lady came to assess my husband's finances, she took into account his income and expenditure and arrived at a figure we would have to pay. We agreed and the SW then contacted the day centre and arranged for 2 days a week.

Fast forward 2 years and my husband was admitted, not sectioned, into an assessment unit. After 3 weeks there we were told his needs were complex and coming home would not be an option. We listened to their reasons and agreed to look for nursing homes. Week 6 saw us sitting with the staff of the unit talking of their findings whilst observing my husband. We were asked our opinions of their findings. Copious amount of notes were made and at the end of a very long afternoon we were told that the findings would be passed to panel. what panel was my question. CHC panel, I had no idea that the previous few hours had been spent assessing for CHC. They explained it all to us, each domain and their scoring had to be accompanied by a very detailed description of behaviour and how they had come to their decision as to the score and then passed on.

Two weeks later I received a call saying CHC had been granted but the level of care was now higher than EMI nursing so the 20+ homes we had already looked at were not suitable. My husband has now had CHC for 2 years and has 1:1 care.

So the SW, staff in the assessment unit or CHC had no knowledge of my husband's finances, no one asked. No one asked the value of our home or who infact owned it. He was given CHC because his medical needs warranted it. He was not in the last few weeks of his life, he was active.

He is now non weight bearing, has to be hoisted, fed and is doubly incontinent.

So my experience was excellent, he was awarded CHC without my asking, which as I had no idea it existed was lucky so maybe As my heading says, we live in Utopia, now that will have an expensive post code.

It is very sad that so many people have to fight to be looked at for this funding, maybe each NHS has differing amounts available for CHC , but they should all adhere to the rules and not interpret them to their own advantage. The local authorities work the same. Our LA charges £135 per week towards respite, 4 miles up the road, the next LA charges £70 per week towards respite, but that's another story.

I have to agree with Saffie and LynT that we are clouding CHC with issues that do not in anyway apply to CHC funding

Hi Jaymor

It is nice to hear appositive experience re funding.
My council has agreed that wrong advice has been given by social workers and training is being done which will be completed by the end of 2014.

I would be interested in sitting in on a few meetings in 2015 to see if things have improved and potentially I will be.

Sadly I suspect that some of the residents I have helped will not be around for the next assessment and my help will probably be required less.

What I do wonder is where the money is going to come from.

I have complained to my local hospital / council that a hedge is growing half way across a pavement outside the hospital and the excuse I am getting is there is no money.

I lent my ladder to a police man a little while ago so he could turn the A & E sign in the right direction. He hammered a bit of broken wood in to it to keep it tight which a neighbour supplied as a temporary measure but he said a strong wind would still move it.

I had nothing suitable immediately to hand.

I noticed nothing had been done 2 weeks later.

I have e mailed and phoned the council several times and nothing has been done.

This morning the sign was pointing in the wrong direction again.

I just think I am wasting my time reporting things.


William

 

[LYN T]

[/B]My bolding.

That is without doubt very true but only in so far as it is relevant to the subject.
If it isn't, it's of no value whatsoever.
In view of this, I now intend sitting on my hands to prevent my fingers doing any further talking.

Oops Saffie

We will both have very sore body parts soon You will have sore hands and I'm still on my knees begging for forgiveness Can I get up now please?

 

[LYN T]

I have complained to my local hospital / council that a hedge is growing half way across a pavement outside the hospital and the excuse I am getting is there is no money.

I lent my ladder to a police man a little while ago so he could turn the A & E sign in the right direction. He hammered a bit of broken wood in to it to keep it tight which a neighbour supplied as a temporary measure but he said a strong wind would still move it.

I had nothing suitable immediately to hand.

I noticed nothing had been done 2 weeks later.

I have e mailed and phoned the council several times and nothing has been done.

This morning the sign was pointing in the wrong direction again.

William

William

Perhaps the hedge needs a hedge fund?

At least with the A & E sign pointing in the wrong direction the NHS will save money-potential patients won't know where to go. What a cunning plan

'I just think I am wasting my time reporting things.'

Probably William, probably.

Lyn

 

[WILLIAMR]

William

Perhaps the hedge needs a hedge fund?

At least with the A & E sign pointing in the wrong direction the NHS will save money-potential patients won't know where to go. What a cunning plan

'I just think I am wasting my time reporting things.'

Probably William, probably.

Lyn

Nice one Lyn

Only problem is I think most local people know where A & E is so I don't think the numbers will fall much.

About 10 years ago I was having pains in the area of my heart and I was with my father at the time near Weston.

As there was a sign pointing to A & E Dad got in the driver's seat and followed the signs.

Some nutter had pushed one of the signs in the wrong direction.

Fortunately the hospital was clearly visible but this sign being wrong resulted in us going to the wrong part of the hospital.

We did ask a nurse who was walking up the road and she pointed un in the correct direction.

Fortunately I had only pulled a muscle.

Probably from the government point of view it would have saved them paying my state pension which will kick in in just over 2 years as I was near the end of my working life.

Only thing is it will have missed out on a substantial amount of tax which I am now paying on my occupational pension.

William

 

[win]

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

This is totally correct, I had CHC for both my late husband and my late mother and the only thing I could contribute to was paying for the take a break vouchers from the local Carers Link @ £ 3 per hour. I could have refused I expect but did not. Even the equipment has to be passed by panel as it is their duty to care once CHC has been awarded.

 

[win]

5 years ago, 4 years after diagnosis we were given a SW who came to assess my husband's needs and to assess what help I needed to look after my husband as it was becoming difficult caring on my own. He thought day care and passed on his findings. He never asked about our finances, why should he?

A lady came to assess my husband's finances, she took into account his income and expenditure and arrived at a figure we would have to pay. We agreed and the SW then contacted the day centre and arranged for 2 days a week.

Fast forward 2 years and my husband was admitted, not sectioned, into an assessment unit. After 3 weeks there we were told his needs were complex and coming home would not be an option. We listened to their reasons and agreed to look for nursing homes. Week 6 saw us sitting with the staff of the unit talking of their findings whilst observing my husband. We were asked our opinions of their findings. Copious amount of notes were made and at the end of a very long afternoon we were told that the findings would be passed to panel. what panel was my question. CHC panel, I had no idea that the previous few hours had been spent assessing for CHC. They explained it all to us, each domain and their scoring had to be accompanied by a very detailed description of behaviour and how they had come to their decision as to the score and then passed on.

Two weeks later I received a call saying CHC had been granted but the level of care was now higher than EMI nursing so the 20+ homes we had already looked at were not suitable. My husband has now had CHC for 2 years and has 1:1 care.

So the SW, staff in the assessment unit or CHC had no knowledge of my husband's finances, no one asked. No one asked the value of our home or who infact owned it. He was given CHC because his medical needs warranted it. He was not in the last few weeks of his life, he was active.

He is now non weight bearing, has to be hoisted, fed and is doubly incontinent.

So my experience was excellent, he was awarded CHC without my asking, which as I had no idea it existed was lucky so maybe As my heading says, we live in Utopia, now that will have an expensive post code.

It is very sad that so many people have to fight to be looked at for this funding, maybe each NHS has differing amounts available for CHC , but they should all adhere to the rules and not interpret them to their own advantage. The local authorities work the same. Our LA charges £135 per week towards respite, 4 miles up the road, the next LA charges £70 per week towards respite, but that's another story.

I have to agree with Saffie and LynT that we are clouding CHC with issues that do not in anyway apply to CHC funding

Mine too, due to a very, very competent social worker who worked with me all the way through the process of both my late husbands and late mother's funding

 

[win]

This is totally correct, I had CHC for both my late husband and my late mother and the only thing I could contribute to was paying for the take a break vouchers from the local Carers Link @ £ 3 per hour. I could have refused I expect but did not. Even the equipment has to be passed by panel as it is their duty to care once CHC has been awarded.

I forgot to say that in our cases the funding was awarded for home care, but the same rules apply.

 

[Lena99]

O thank goodnes - 'real' CHC stuff!
Lena I'm afraid that it is more difficult to gain a 'Severe' for some areas than others.
At the risk of boring you and others who already know but just in case it might help, I'll outline my experience.

My husband's dementia worsened drastically after an amputation at upper thigh level and by the time he was assessed the first time in a community hospital for mental health, he was unable to walk, had MRSA in the wound and had gangrene in his remaining foot as well as frequent pressure sores. He also was an insulin-dependent diabetic with peripheral vascular and also Stage3 kidney disease. He was on Rispiridone for aggresision, paranoia and hallucinations. He was refused CHC funding, never getting beyond the Checklist.

He was transferred to a nursing home and I re-applied in September 2012, when the deadline came for retrospective applications. I applied for both retrospective and forward CHC. The nurse in the home said he would not get the funding but I ignored her.
He was by this time, totally dependent on carers for his every need. He had to be hoisted for everything and fed his meals. He was totally cognitively confused and it is doubtful if he knew me but as he was no longer able to communicate in any way that made sense, it was impossible to know.

He was bed-bound apart from 4 hours a day in his special electronic chair due to his fragile skin condition and was moved every 2 hours to try to prevent pressure sores. He also had ulcers on his hand from his permanently clenched fist which nothing was able to help despite the nurses' and GP's best efforts.
He of course still had the previously mentioned illnesses though the home had cleared up the gangrene and the MRSA.
He had also hit a carer and could be very aggresive at times though, as I have earlier mentioned, the assessor said it had to be far more frequent to merit the funding.

This time, in September 2013, he passed the Checklist but was still only in the 'moderate' catergory for Mobility - despite the fact that he was hoisted at all times, barely able to move at all by himself and couldn't even lean forward!

The full assessment was arranged for early May 2014 - not the 28 days as it should have been - but I rang the CHC team the day before to ask if it was ok for my daugher to accompany me and was told that the assessment next day was cancelled because the SW had not supplied their report. Hardly surprising as no SW had been near my husband so what she could have written would have been of no use whatsoever!

That was the last I heard of it! No further assessment date was ever given and my husband died on 10th June. I have received no further communication from them.
Actually, writing this has made me decide to contact them.
Had my husband passed the assessment, they would have had to refund the fees from the date of the assessment, some 9 months worth.

I haven't felt up to taken this further but may well do so and if I do, it will now be retrospective of course which could very well include the time from the first failed assessment too! If I do, I think I might employ a solicitor though I worked so hard to get all the evidence for that last assessment, it would be a shame to pass it all over.

As to what you can do Lena, I would contact Carers UK - a lady from there was really helpful before this last assessment and was prepared to accompany me on the day but was already engaged elsewhere. She ran though all my evidence and pointed out extra points to include. The Princess Royal Trust for Carers can also help.

Alternatively, or as well as, contact the Appeals group of the AS. Details will be via the society's link at the top of the page. I did this and a very helpful lady rang me and was most supportive.
Good luck. x

Hi again Saffie

Thank you for your suggestions, I contacted Carers UK and AS but they couldn't help. It seems that there used to be an NHS Continuing Care Volunteer Support Group but it has had to close down.

If you or anyone has any other suggestions as to how I can get any help or advice on how to get through the CHC appeal would they please let me know!

If you do decide to re-open your case I hope you get some good news.

 

[Saffie]

Hello Lena. I am disappointed that the Alzheimer's Society Appeal group has closed down. I had heard some time ago that it was not taking on new cases at the time due to the demand but expected it to restart again later but to close it completely is a shame.

I'm also surprised about your branch of Carers UK. I rang the people in my local town which call themselves Carers Together but are a part of Carers UK for advice and the lovely lady on the end of the phone offered to come to see me the next day as the full assessment was the following week.
She gave me such good advice that I called in later and made a donation as well as giving her a box of chocolates. She said that though she couldn't make the day of the assessment, she would come and support me if it was refused and I decided to appeal.
As I said before, the actual assessment was cancelled by the CHC team and I heard no more.

A lady from the other charity I mentioned, Princess Royal Trust for Carers, uses a room I worked in for their meetings with carers and she also said she would have helped but was again, tied up on that date.

You could try Age UK but can't really suggest any other concern which might help.
Perhaps others might be able to do so.
The other option of course is to use a solicitor.
I wish you the best of luck.

 

[jenniferpa]

I'm not sure they have shut down completely - the web page still says they aren't currently able to take referrals. Having said that, it's not much help to the OP. The page does give a list of groups that might be able to help though, so I'm going to give a link to that page anyway.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?&documentID=398

 

[Lena99]

Hello Lena. I am disappointed that the Alzheimer's Society Appeal group has closed down. I had heard some time ago that it was not taking on new cases at the time due to the demand but expected it to restart again later but to close it completely is a shame.

I'm also surprised about your branch of Carers UK. I rang the people in my local town which call themselves Carers Together but are a part of Carers UK for advice and the lovely lady on the end of the phone offered to come to see me the next day as the full assessment was the following week.
She gave me such good advice that I called in later and made a donation as well as giving her a box of chocolates. She said that though she couldn't make the day of the assessment, she would come and support me if it was refused and I decided to appeal.
As I said before, the actual assessment was cancelled by the CHC team and I heard no more.

A lady from the other charity I mentioned, Princess Royal Trust for Carers, uses a room I worked in for their meetings with carers and she also said she would have helped but was again, tied up on that date.

You could try Age UK but can't really suggest any other concern which might help.
Perhaps others might be able to do so.
The other option of course is to use a solicitor.
I wish you the best of luck.

Hi Saffie

There is still some part of it there but they will only help when the appeal has been rejected and the panel has also rejected it. They will then offer some support. The trouble is I need it now to get through the first appeal rather than continuing the stress with further appeals!

 

[Saffie]

O right. Well, that's better than nothing I guess.
I hope Jennifer's link might be of some help to you too.