CHC funding

[Tarmaced]

Has anyone's relative received this? I know it's extremely difficult to obtain.
Do you mind telling me what their condition was & how unwell they were please?

Also considering using a specialist solicitor if anyone has any recs.

Thanks

My DF received it as he was terminally ill, last 6 weeks of life.

My DM wasn't eligible despite having Parkinson's, Alzheimer's and various other dreadful ailments.

Unless you are close to death or severely incapacitated that 24/7 nursing is required (and that's by a Registered nurse) and not another healthcare carer, then very slim chance of CHC.

My dad passed the checklist stage but failed the DST assessment and we couldn't afford to pay a legal firm, they quoted £5k plus. Even if CHC is awarded you don't get the legal fees back and there's no guarantee it would be awarded anyway even with specialist help.
I wrote an appeal which was subsequently upheld, but it wasn't easy.

Dad had mixed dementia, he didn't have any other major health issues at all but his behaviour caused by the dementia itself was really bad. He was unpredictable, didn't sleep for longer than a couple of hours at a time, and basically resisted all care.

The threshold for CHC is very high. I found the Talking Point forum on the Alzheimer's website really helpful.

Have a look at beacon

beaconchc.co.uk/what-is-nhs-continuing-healthcare/
They have free info service
beaconchc.co.uk/how-we-can-help/free-information-and-advice-on-nhs-continuing-healthcare/

They were really helpful when we claimed.

This is 4 years ago so thresholds might have changed now but we obtained it for my late father. His prostate cancer had spread to his bones and he was in hospital after having lost sensation in his legs. They made an unsafe discharge (without consulting us) when they realised he was in a (very expensive) private care home.
A friend in the field advised us to apply (no one official ever made us aware he might be eligible) and the care home and GP helped us with the horrible forms. Eventually, it was not only paid out but also back-dated to the day he left hospital. He died 2-3 months later and he/we received the full fees for his care for that whole period.
Healthwise, he had advanced cancer and was receiving end-of-life care. He was doubly incontinent and unable to walk. Because of his height, (6'2") it required three members of staff to lift and turn him. He needed qualified people to administer the heavy duty drugs he was on and needed help feeding himself.

This sounds like my stepfather! I was furious when we had the assessment meeting with professionals. It had to be done over Zoom during lockdown, none of the ‘professionals’ had actually set sight on him, he ticked all the high risk boxes but then at the end of a 2 hour meeting the Nurse assessor said, very breezily, oh, he doesn’t meet the threshold because his needs aren’t complex.
My argument is that he's under a DOLs order, so cannot leave his home (not that he even knows what day of the week it is or who he is) and I couldn't take him home either but he has to fund his own care. He falls out of bed every night, assaults staff left right and centre, has assaulted other residents if the come anywhere near him, has huge medical needs. Its bloody awful.

Have you appealed the decision? I started by obtaining as much relevant information as I could, by sending Subject Access Requests to every medical and care department that had dealt with my dad. It was eye-opening, and not in a good way, to find out exactly what had happened whilst he was in the “care” of local authority and NHS staff. There had been numerous accidents and incidents that no one had ever thought to notify family of, even though we visited every single day.

My Mum should undoubtedly have qualified. She had a degenerative neurological disease and was very severely disabled. Unable to even move her little finger. Unable even to control the direction of her eyes. Tube fed. We were paying for round the clock live in care. She passed the DST, but the CHC people just argued she wasn’t ’complex’ enough. The CHC people argued that her needs weren’t ‘unpredictable’ enough, even though her breathing would stop in the middle of the night. The hospice came to the assessment to talk about her complex needs, and it made no difference. Appalling.

When she died, we were awaiting the outcome of our latest application. This was granted, and we got back three months of care costs between the application and the date of her death. I think we only got this because she had already died, so they knew it was a finite amount of money.

My Dad died just before her. He had terminal cancer, and cut back on how much he ate because he was so worried about paying for her care. I think CHC is a horrific process which fails to meet the needs of very vulnerable people with intense needs. I don’t know how the assessors/panel sleep at night.

Mum was given it right off the bat when she was diagnosed with terminal cancer and given 3 months to live.

she went into a home 2 months later - really nice Bupa one (expensive)

when she was still alive 4 months later they stopped funding her 🙄 the bar to qualify is really high. You need to be so very ill to pass the ‘test’

then when she was dying they started again, for the last month of her life when she was really incapacitated

My mother had it when she was discharged from hospital to a nursing home. They said they would review the funding after 13 weeks but she died after about 6.

She had lung cancer.

I have had various other relatives with dementia, one of whom was also blind. None of them qualified for funding.

Thank you all for your responses. It does seem nigh on impossible to get, from what I can tell.

The person concerned has advanced Parkinson's & is doubly incontinent. Is bedridden, with very poor skin integrity and pressure sores that have gone from Grade 2 to 3. Lots of bruising too. Has this week complained of pain at the site of one of the pressure sores and is/was receiving paracetamol.
Hasn't got capacity, cannot summon assistance with the call bell; is barely eating/drinking, which won't help the pressure sores to heal. Has occasional hallucinations.
How bad do you have to be?!

You can check the criteria online. I recommend downloading the ”decision support tool” they use, and doing your own assessment against the criteria. Then see if you think your relative would tick “severe” on any of the domains.

I honestly wouldn’t pay £££ to a solicitor. But see if you can get support from one of the charities like AgeUK if you need someone to help advocate or go through paperwork

I’m afraid high care needs aren’t enough. It needs to be medical and properly nursing level. We got it for my father when his needs got medically complicated with needing oxygen, borderline peg feeding, heart failure etc alongside bed bound, continence care , brain damage. Just going through it for Mum who sounds similar level of need to your relative and I don’t expect her to get it (it’s same assessment for CHC as for funded nursing care).

the Guidance says:

A clear recommendation (and decision) of eligibility for NHS continuing healthcare would be expected in each of the following cases:

• a level of priority needs in any 1 of the 4 domains that carry this level
• a total of 2 or more incidences of identified severe needs across all care domains

36. Where either of the following criteria are met:

• a severe level need combined with needs in a number of other domains
• a number of domains with high and/or moderate needs…

General experience is that that last bullet “a number of domains with high and/or moderate needs” is unlikely to cut it

https://www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool

@Tarmaced sorry to hear how unwell this person is but with respect it sounds as if their needs can be comfortably met by trained nurses and support staff in a standard care home setting. They definitely have a very high level of care need but that doesn’t mean it’s complex or unpredictable enough to qualify for CHC funding. The level of care available in standard settings is very high which is why the bar to meet CHC funding is even higher.

My mum got it when she was discharged from the hospice and died two months later. They basically want to know that they're not going to be paying out for many months to come so seems to be given to people who are not expected to live past 3 months. So unfair though for others who need it too.

My DM received CHC 2nd time round. It is awarded not necessarily due to the severity of a condition but rather the complexity.
I found the whole the process beyond stressful and was shocked when it was finally awarded.

Happy to DM if you need any further info

Got it relatively easily for relative with terminal cancer with weeks left to live (turned out to be six weeks.)
The Macmillan nurse did all the forms and it was straightforward.

People are confusing the two different types of CHC funding.

There is fast track continuing healthcare which is awarded without a DST being completed if the person meets the criteria of being terminally ill with a rapidly deteriorating condition. This is reviewed after 12 weeks.

Fully Funded continuing healthcare is awarded after a full DST and is for people whose nursing care needs are of a nature, complexity, intensity or level of unpredictability that is above and beyond the typical care that would be provided by nurses in a nursing home.

It's not diagnosis specific or even how 'unwell' someone is, it's about how complicated it is to manage their care.

The NHS pays a weekly contribution called the funded nursing contribution to anyone needing nursing care as NHS care is 'free at the point of delivery'. If someone's nursing needs costs more than the funded nursing contribution provides for then this is where CHC funding becomes relevant

Examples:

pressure sores that are not responding to a treatment regime requiring specialist support.

Moving/hoisting that requires more than the standard 2 people due to extreme fragility or complexities in how a person needs to be moved.

Medications requiring titration or daily decision making e.g. lorzepam to manage behaviours.

Challenging behaviours that don't readily respond to standard reassurance techniques

Regular fits or other conditions that may require daily nursing intervention e.g. very unstable blood sugars.

I got it for my dad he had weeks to months left with cancer. It was the hospice who arranged it. If your parent isn’t under the care of a hospice they are your best help in my experience.

That is fast track CHC funding and is fairly easily awarded to anyone in the last few weeks of life after completion of a checklist and a nursing assessment saying they are in the terminal phase of a rapidly deteriorating condition.

Standard Fully funded CHC is something slightly different with different criteria.

Nearly everyone on this thread who has replied saying their terminally ill relative got CHC in the last weeks of life will be talking about Fast track CHC funding rather than Fully Funded CHC.

Not an elderly relative, but DD gets full CHC funding. The most severe epilepsy, where she needs 1:1 supervision all her waking hours; and video/audio/mattress monitoring at night. She can suffer injuries at any time, falling in a seizure - and needs to be checked over by an experienced nurse. She can die at any time. She needs an onsite consultant neurologist to make medication changes at any time.

It’s a neurodegenerative condition with complex learning disabilities and challenging behaviour. She can barely remember anything - who she is with, what she ate at her last meal or what she did today. She is incapable of learning new information.

I applied and it was granted straightaway, after they did the DST.

This is the state my DM is in. She is in a home with a nursing wing but she is in the ordinary care section because her needs can be met by carers. She is not bed ridden but she has no mobility in any of her limbs and can not even scratch her own nose. But her needs are for social care, not nursing care.

My friend's DM had a catastrophic stroke that robbed her of all mobility and speech. Even with the support of the care home they were denied CHC because her needs were seen to be social, not medical.

My experience is of my DF actually qualifying for CHC. Was told by the consultant he required nursing care and then allocated a social worker. Social worker was really good and in conjunction with a very knowledgeable Matron/Manager/team at the home was granted it within about 3 weeks of being admitted. Very little fuss and compared to the other posters his needs at the time were far less than those mentioned. I do believe we were simply lucky

No. Despite severe arthritis, diabetes and vascular dementia needing round the clock care. House sold, all money used and then council stepped in to pay most of the fees.

A more positive story here. DF with pancreatic cancer. Had chemo after being diagnosed at Stage 3 and then stopped it as finding it too difficult.
Had NHS palliative care team visits to assess needs etc. DF always said he’d prefer hospice care to hospice at home in last stages. Was looked after at home by DM - not in severe pain but discomfort and gradually doing less and eating less. Fortnightly then weekly visits from palliative care team.
Were advised to have a hospital bed and offered careers by palliative team but not keen. Then told that they would be keeping an eye on the decline and at the right time could apply for fast track CHC funding for him to provide care at home or elsewhere as he chose. None of us had ever heard of it. Told it would be fully funded and not means tested.
When DF finally agreed to hospital bed and had some continence issues and was clearly going downhill (driver with morphine in house ready for use when needed the palliative care team organised for emergency careers to start coming (until then, hadn’t needed careers as DM doing it and v little personal care had been needed) and launched the process for fast track assessment. It was carried out the next day and within 24 hours was in place.
DF was able to go to a fully funded, luxury nursing home that could provide end of life care the next day. There was little else nearby that was travellable for DM. DM visited him for 2 weeks before he died.

To be honest, the level of attention and care he had from the palliative team and the access they arranged to all the other assessment services was brilliant and amazing in its speed. And it all just happened without anyone having to push for anything.

From the reports on here, I can see that was unusual.

All I can think is he had a very specific and rapidly deteriorating type of cancer. It was clearly diagnosed and life span expected to be short and he had started to deteriorate and it was clear the direction he was going in. Although he wasn’t bed ridden when admitted to the home, the chances of sudden deterioration and need for opioids was great. No-one seemed to have any doubt he would qualify. The staff visited him (all NHS) were extremely clued up about processes and drove it all. He was pretty low and depressed, as was DM, so that might have contributed too.

Just wanted to say if anyone’s still looking into CHC funding, there’s a free tool that can help you figure out if it’s worth applying—it made things a bit clearer for us: https://www.winstonsolicitors.co.uk/calculators/apply-current-and-future-nhs-funding. The whole process can feel like a minefield, so anything that simplifies it is a win!