Has anyone successfully applied for continuous healthcare when it wasn’t a palliative care situation

[HermioneWeasley]

We are applying for my Dad. On paper he meets the requirements of x number of most sever category etc but everyone has told us it’s basically only given in palliative care situations.

has anyone applied successfully when it was a long term complex and severe care situation?

would you mind telling me more about the situation and how you described the care needs?

thanks

No, we tried for my Dad , who was terminal , (CMML)but it was turned down , it's known to be practically impossible to get. l am sorry to say .

I had a long battle to try to get funding for my mum, which ended up being unsuccessful. Please don’t make the mistake that I did - I was talked into using Compass to handle my mums application. When we had an initial discussion they were very encouraging and insisted that my mum was very likely to qualify for CHC funding and thst they could present my case much better than I could. They turned out to be completely useless and the only thing they were good at was relieving me of a substantial amount of money for their abysmal services. I handled the local appeal myself and also appealed to NHS England, again both were unsuccessful. You can get a free 30 minute consultation from Beacon Healthcare which was more helpful than anything Compass did, so I would suggest contacting Beacon. They will look through your application and give you advice. Good luck - it’s extremely hard to get unless, as you say, the person is receiving palliative care.

I applied 5 months before my dad died. He did get it a month before he died. I think the only way you realistically can get it is through the palliative health care team. And the only reason I knew of their existence was due t my dad having a hospital admission so it might be worth looking them up.

Yes got it for my mother in law who went from hospital to nursing home - its was 25% contribution awarded of her nursing costs so not great but helped - this was about 10 years ago

Thanks all for sharing your experiences, and thanks for the tip about Compass! I have contacted Beacon and am waiting to hear back.

The needs of the person have to be very complex and unpredictable. It’s really hard (and seems to be getting harder) to qualify for CHC funding.

Do you want to share a little more? Between us we might be able to help.

Yes, we did. We paid for charity support to prepare the application and attend the meetings.

DMiL had dementia, bed sores, incontinent and chest infections. She was quite erratic in her behaviours.
Her GP supported the application. The nursing home also supported because they were providing medical care.

Funding was agreed for 6 months with a 6 monthly review. The review meeting, in person, felt like a done deal before we had provided any additional, updated evidence of her medical needs. It was an awful experience with harsh comments from the staff making the decision.

The team at the review meeting concluded that DMIL was well and didn't require medical care. She died 6 days later.

Yes, my mother had it. She had very complex needs but I was also convinced that the hospital supported it because they had been negligent & didn't want us to sue, but I will never know if that was true. I think she had it initially for 3 months & then it was reviewed. She lived for 7 months after being awarded it.
Just to add, this was 9 years ago.

I did, for my Grandad, he had it for about 5 years. They took it away 9 months before he died and our appeal wasn't heard for almost a year after they took the funding away.

I would say that the key thing is to achieve either a Priority or 2 Severe categories as they are the only way that they can't refuse to give CHC funding. Everything else is basically down to interpretation.

I assume you have got this:

https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare-decision-support-tool-guidance-2022.pdf

I would go down it in advance and see which category you think he falls into for each domain.

Then work out why he falls into the higher, not the lower category, I.e. your arguments for when they disagree with that categorisation. If he is in a care home, have a meeting with the care home worker who will be coming to the MDT before hand.

It's also worth reading up on the procedures - e.g. if the MDT are in disagreement they are obliged to use the higher of the options they disagree on.

As a social worker I see plenty of people awarded it because they meet the criteria of having primary health care needs of a nature, complexity, unpredictability or intensity that mean they are over and above what can lawfully be funded by social care/ privately.

I also see plenty of families who are told they will be eligible by companies they have to pay to assist them do what adult social care would do for free if they also felt the person may be eligible. They actively tout for business on threads like this as well.

Simply having nursing needs isn't sufficient, the nursing needs have to be over and above the normal standard of nursing care that could typically be provided in a standard nursing home. The homes themselves are usually pretty good at identifying any residents they feel would meet the CHC criteria and asking for the assessments to happen.

Please don't pay a company to help.

There seems to be a theory that the assessors don't want people to get CHC, whoch simply isn't true, it's just that the bar is very high. Someone may have e.g dementia and seem completely unmanageable, but in the right setting it'll be bread and butter care.

The DST is used, the evidence has to be there, and if it's not then you won't get CHC.

My mum was refused it two months before she died. The person conducting the assessment had no interest in anything other than denying she met the criteria. She would have got it in the past, they're really only allowing it in extreme circumstances now. At least in my area.

Our of interest OP which document have you used do far to consider his needs? The initial checklist has a much lower bar to make sure no one is missed but on the full DST document it is much harder to score in the higher levels.

It's an absolute non-starter as well if someone isn't keeping meticulous daily records about his needs and how intense/complex/unpredictable they are.

The assessor in my mum's case was very obviously intent on dismissing the areas where my mum met the criteria, and dismissed evidence submitted by my mum's care company, and her integrated care nurse. My evidence was deemed completely irrelevant.

I did, moderate to severe Alzheimer’s but not technically terminal. The fact that they had savings under the threshold for contributing to social care I think helped but the assessor was lovely, he was a paramedic by training but did assessing 2 days a week. He realised the situation (the main carer was in bad health and couldn’t cope) social services were finding 4 visits a day and the family were funding overtime sleep in because she kept escaping. They took over funding the daytime from social services and overnight from the family with me managing the budget then when she broke her hip they facilitated the move to a care home on release from the hospital. She lived 2 more years

Yes my dad has it. He has very complex needs across many domains (breathing, mobility, dementia, communication, continence, etc) but is not end of life. It has been very difficult to find nursing care for him due to this. We didn’t use a company to support but I helped DM navigate the process. From what I’ve heard I think the assessors were very fair in this case.

Who is currently funding should play no part in the decision and the decisions are always audited higher up to make sure that assessors haven't awarded through sympathy. As harsh as that sounds it's because its a pot of NHS money to fully fund the care of only those with needs so complex the NHS has a lawful duty to fund all their care.

Many of the people who aren't eligible for CHC are still eligible for FNC (funded nursing contribution) where the NHS pays towards their nursing costs e.g. in a nursing home. Because this is paid directly to the care home though and doesn't cover anywhere near all of the total care home fees it tends to get a bit forgotten about.

I’ve been through it with my stepfather. It was brutal! Basically, they can have a really high level of need but if those needs can be met without complex nursing care then they don’t meet the criteria. He was non verbal, doubly incontinent, violent, bed ridden, bed sores, lots of different meds etc. He had a DOLs in place. But all his needs could be met by Health care assistants. I couldn’t believe that he was being held legally against his will and had the insult of having to pay for the pleasure.

I got it successfully for DD1 in her 20s with a severe life threatening condition, but nowhere near palliative care. She got a Priority and several Severes.

Generally, she’s looked after by care workers, but she needs an onsite medical centre as and when required - she needs to be checked over by a nurse from time to time. Sometimes, they decide to send her to A & E.

I know other young people, with the same condition as her, with NHS CHC funding.

My cousin got it for his mother with dementia, because he worked for a firm of solicitors in that field.

Thanks all for your experiences.

he has vascular dementia- he’s had a major stroke and series of TIAs. He is in a nursing home. He has no concept of where he is. He knows immediate family but doesn’t recognise anyone else. If you leave the room for a few minutes he forgets you were there. He has no concept of his needs - he’s doubly incontinent and doesn’t know when he’s soiled himself. At risk of UTIs because he’s got a catheter. Doesn’t know if he’s hungry or thirsty. Has difficulty swallowing - he’s on a soft diet and thickened fluids. He can lift a sippy cup to his lips when given to him and encouraged to drink but can’t feed himself.

he is diabetic. He is obviously unable to administer his own medication. He’s got a persistent pressure sore and another one developing. He is immobile and bed bound (moved with a hoist).

with regards to communication he’s not able to comprehend much. He’s also severely hearing impaired.

Most of his needs can be met by careers rather than nurses, but things like the diabetes management and pressure sores are more medical.

it would be helpful to hear from people the points we need to make about his conditions

We did for a short period due to unpredictable violent behaviour that caused the placement to break down. It was removed when the behaviour stabilised and Mum became more unwell and less mobile. But that was a few years ago. I think the domains that are most salient are breathing (eg tracheostomy) and behaviour (unpredictable violence).

Most of that is standard nursing and won't meet the complex/unpredictable/intense criteria.

The pressure areas not responding to treatment may score highly but it will depend how problematic they are to manage, how long they have been there for and what specialist support they are requiring. Are tissue viability nurses frequently having to review or is there a specialist dressing regime?

Similar with the diabetes. It's not the diabetes itself that will score its how unstable the diabetes is and how often a nurse or medical professional is required to be involved to manage the diabetes (e.g. several times a day or daily).

The risk of something happening is not the same as something actually happening and requiring regular nursing support. Risk of UTIs doesn't score the same as frequent utis/ problematic catheter care or requiring regular bladder washout. From your description his continence care is probably a score of moderate.

He will probably score a high rather than a severe on cognition. However even a severe in cognition won't necessarily indicate a primary health need if there aren't any other significant scores in severe/priority domains elsewhere.

No harm in asking for a checklist to completed though. Is he already eligible and in receipt of FNC?

I understand that. He’s had a screening and got an assessment soon but agree it seem his needs are mostly about care rather than nursing.

So from your description:

Breathing - does he get recurrent chest infections/need an inhaler/have shortness of breath? Probably no needs if none of the above.

Food - have you got significant unintended weight loss? Otherwise sounds like it would be moderate to me. I had to have a big argument about this because they argued because his weight had stabilised at a BMI of 14 it was no longer high. They did give in in the end.

Continence - probably moderate I think from your description.

Skin - anywhere from moderate to severe. I'd focus on this because it may be key to getting finding.

Mobility - I would guess high but this is another where severe is an option so see what you think.

Communication - I would guess high from your description? There's no severe option here.

Psychological and emotional needs - this was another one where I ended up having to have a fight. He has become less able to vocalise so their assumption was that that meant he was less distressed. I thought it meant he just wasn't even able to scream any longer. Not sure on this from your description.

Cognition - I think this one sounds like it should come out as high or severe. Severe is probably what you need to push for to have some chance of CHC funding.

Behaviour - this is where we originally got the second severe that compelled CHC funding and as he became less mobile the risk level came down. Make sure you flag areas where there may be a risk to others if they exist.

Drug therapies - this is going to depend how brittle his diabetes is and how challenging it is to manage. Is he type 1 or type 2? Does he need injections if insulin etc.

ASC - none that you've flagged I don't think?

Other needs - we accepted this as none and it was then flagged as evidence for why he didn't need CHC later so worth considering if there's anything extra you might find it helpful to bring in here.