Has anyone ever got CHC funding?

[I8toys]

We have a meeting at NH next week for MIL. Has anyone ever managed to achieve the unattainable? And how?

I have only known palliative patients get it ( I used to work in a hospice ). Otherwise I think you need to show specialist Nursing care is needed rather than just care that can be given by carers.
What difficulties does your mum have?

I used to work helping with the prep and attend meetings for this. I only knew of a few people who got it. The key was ‘unpredictably’ it seemed. Someone with standard nursing care doesn’t get it but when someone’s needs change a lot and it requires specialist care to monitor and support them, they might get it. I think I had one patient with Lewy Body Dementia who got it because his behaviour was unpredictable and he needed specialist mental health nurses to care for him.

I've sat in many CHC assessments as a social worker

what is being assessed is whether the nursing care needs are of a nature, complexity, unpredictability and intensity which means they cannot be met within the funded nursing contribution the NHS already pays the nursing home (£209.19 a week) to deliver medical care to the person 'free at the point of access' on behalf of the NHS.

If the person's nursing needs are fairly standard and routine and can be easily met within that £209.19 a week budget then they probably won't be found to be eligible for fully funded continuing healthcare.

if their nursing needs are not routine because of their nature, or because they are complex, or unpredictable or very intense and therefore are taking far more nursing resource than is covered by the £209.19 nursing contribution then they should qualify for CHC.

A lot of families are given false hope that the whole cost of a persons care will be covered by CHC because the threshold for the CHC checklist is very low to ensure nearly everyone with nursing needs is assessed for ChC, but the threshold at the decision support tool (DST) stage to actually be found eligible for CHC is very high.

The £209.19 nursing contribution is built into the weekly cost of nursing care so it can feel to families like they don't actually get this NHS contribution because it gets paid directly to the care home and doesn't get 'knocked off' the final weekly bill the person themselves has to pay for the residential/bed and board aspects of their care.

There is a different type of CHC for people who have palliative care needs called Fast track CHC - it is much easier to get and just requires the nurse completing the assessment to agree that the person is rapidly deteriorating and in the final stages of life. If someone gets Fast tracked for CHC it usually means they aren't expected to be alive for much longer than another 12 weeks.

Thanks for explaining.

I agree with this - my mother got this exactly 10 years ago. How nice of Epsom General Hospital to suggest it, we never knew of such a thing.

Beware of docs bearing gifts. We couldn't get the hospital - or her subsequent care home in Surrey - to give her sufficient drink from that moment on. We had to attend the care home daily to ensure it happened until her death in October 2017 - even when she got taken off it at Christmas, probably because I whistleblow the care home that nearly killed her to the press.

Palliative care wasn't actually mentioned, nor end-of-life care. Took a while for us to catch on what they were doing, and we could do little or nothing to stop it. Nothing actually. Surrey social workers complicit and in the shadows. And we were paying over a grand a week for this, to have the care home try to kill her - feeling grateful that we were 'allowed' to put our lives on hold and visit daily to give her drink. Any attempt to assert ourselves on the issue would meet with counter-allegations, prepped by Surrey's social workers who, Post Office-style, worked to a playbook.

You don't get over stuff like that. PS hello @hatgirl see you're still going.

MIL was put into respite as FIL has dementia. When in respite her behaviour became aggressive and she pushed a staff member into the road. They couldn't deal with her and we couldn't have her back with FIL so we quickly arranged another dementia care home to put her in. She was undergoing test CT scan etc and we were waiting results. The respite home got her diagnosed with dementia, brain shrinkage and blood clots by a doctor and emergency DOLS was put in place.

She has been moved to the specialist dementia care home and has been in there 6 weeks. Her behaviour has fallen off a cliff - aggression and fighting with other people in the home. She is on the maximum dosage of her dementia drug. She is unpredictable and dangerous. The NH has asked for a meeting and thinks she may get full funding.

Apparently when the people doing the funding (not sure what they are called) where last there to see her, the NH said she was having a particularly bad day and it would help our case.

I got it for my mum (demetia and other health issues) and they took it away because she didn't die fast enough. She died 4 months after they revoked it.

The nursing home will have a pretty good idea she will meet the criteria by the sounds of it. They know themselves what needs they can meet within the standard nursing funding and when someone needs more.

if she is e.g requiring 1:1 observations as she is a risk to staff and other residents then that is an 'intense and unpredictable' level of nursing need.

Sorry to hear she has had such a rapid decline.

See above - the type of CHC funding your mum will have had is Fast track CHC funding and the criteria and assessments to get it are completely different to the Fully Funded Continuing Health Care assessments the OP is discussing.

For fast track CHC funding a person has to be considered to have a rapidly deteriorating condition and be in the terminal phase of their life. Its purpose is fund the final weeks of care for someone when they are dying. It's reviewed after 12 weeks and if the situation appears to have changed /stablised at that point and the person is no longer considered to be rapidly deteriorating then it can be revoked - for your mum if after it was revoked she could have been re-referred for it if the medical professional involved in her case identified a few weeks later than she was deteriorating again?

I don't know why they don't rename one of the funding streams to make it clearer that they are two different things because it is confusing and does lead to misunderstandings about why some people seem to get CHC quite easily and others have a huge assessment process to go through.

We got it in appeal for 6 months for my parent. Then they stopped it as apparently she had made a miraculous recovery. Soon after that she died.

We did and not fast track either - it took a lot and those that be were very reluctant to and didn't stick to timescales or anything that they should have done.

We used help from here

https://beaconchc.co.uk/what-is-nhs-continuing-healthcare/

They have free guides and advice

Sorry to hear that.

was it Fast track funding or fully funded CHC that was in place?

people can lose fully funded CHC if they deteriorate - e.g in the OPs case if her MIL deteriorates and is subsequently nursed in bed and no longer assaulting people then the complexity, intensity and unpredictability of her care is no longer there and her nursing needs could probably then be met within the standard nursing contribution. Equally if someone improves because they settle or a new medication starts to work then they may also stop requiring the fully funded CHC nursing care and can again have their needs met by standard nursing care.

similarly if people are on fast track CHC funding but their condition stabilises and it's not clear if they are still rapidly deteriorating any more then it will be reviewed and possibly revoked. Its usually reviewed after 12 weeks so if it was fastrack funding and it had already been in place for 6 months then you can understand there being an argument that her condition no longer appeared to be deteriorating as rapidly as first predicted.

Fast track chc, fully funded CHC and the funded nursing contribution exist to meet the obligations the NHS has to ensure that no one is paying for medical care because they are receiving it in a nursing home rather than a hospital.

It's very poorly explained to families who often perceive it as unfair that some people have their care paid for by the NHS when others don't.

I was told by our assessor that CHC dated from when they closed the old geriatric wards in favour of care in the community. CHC was to provide the level of care for people that would otherwise be in hospital (rather than in a nursing home). Does that ring true @hatgirl? It seemed to explain why it’s so damned difficult to get.

The person I knew who got it had severe mental health issues and was extremely violent and aggressive and unpredictable,

He was on a locked geriatric ward in a mental hospital,

I think there maybe issues with her mental health combined with dementia. She's delusional - saying father in law wants to cut her head off. Fighting with other people in the care home - she scratched another ladies face last week. Was extremely aggressive in the respite home. She had to be watched constantly as she kept trying to escape. The NH seems to link she has a good case but who knows. It sounds extremely difficult to get and then also to keep the funding.

Yes thats basically it.

But since then medical advances mean we now are able to keep dementing adults alive and physically well for much longer which (in my opinion) needs a really big conversation at a societal level about whether that is always morally the right decision or if we are now prioritising longevity of life over quality of life.

The costs of this (not just financially but emotionally) to individuals, families and the state are huge and unsustainable - for a group of people who if they were able to express a choice would mostly absolutely decide that living for years in a nursing home with advanced dementia is a choice they would never have agreed to.

Perhaps a discussion for another thread another day.

@hatgirl Agree totally.

@hatgirl
Thank you.

She was assessed as needing it by the professionals who visited her, but the panel turned it down. The appeal overturned this and she was refunded 6 months. By the next appeal she required more support, had lost a huge amount of weight and was more confused and wandering. But this time the assessors said no. Then she passed away.

My mom was fast tracked to a nursing home nearly 3 months ago. as she was rapidly deteriorating. She is due a review and myself and my sister were just wondering what this “looked like”. I am asking as I have heard that the funding can be withdrawn, and we may need to start putting things in place, such as selling mom’s house. Thank you for any information/advice given.

My parent was denied CHC following the DST assessment but then, following an appeal was granted it.
The whole process was mismanaged by the staff involved, it was an absolute farce. Timescales were not kept to, the National Framework was not followed correctly, and information withheld.
The system desperately needs an overhaul.

Yes at our review funding was withdrawn.
They said she had made improvements but there was no evidence.
We only got the first one on appeal.
We had already had to sell her house to fund care before anyone told us CHC existed.
Anyway after making the improvements' she went on to end of life care. The care home suggested we apply again but she was so unwell I had no energy or headspace. She passed away and a legal firm got in touch offering to review the case and try and get a refund but I said no point now she's passed.

I’m sorry to hear about your experience, and of course about the loss of you mom.

I am an adult social worker and have sat through many DSTs during my career and it is an awful process. I actually hate doing them as it is so unfair.
As other posters have said, you need to demonstrate (with evidence) how your mum's care needs are above what could be considered normal nursing care.
They look at the intensity and unpredictability.
Beware if they say she is predictably unpredictable and bloody fight them on that statement. It has and will be used as a way for them to duck out of providing funding that should be granted.