Can anyone explain NHS Continuing Heathcare please?

[Sarniegeneration]

Elderly uncle being looked after at home by elderly aunt.

Myself and one sibling (plus our partners and young kids) are only family.

They have a stoic determination to be looked after at home. We support this whilst making sure they are aware of other options.

Uncle had a bought of illness earlier this year which has left him bed bound. He has “mild” alzeihmers if there is such a thing. Knows us all, knows where he is, understands approx what year it is (as in he’s not living in the past), reads his newspaper from time to time. Eats ok but not great amounts.

Cathetarised for a couple of years now (well before he was bed bound). Has now become incontinent of the bowel. He has mild/moderate heart failure. And fluctuating BP.

Aunt has her own health condition that makes her tired. However she’s doing a brilliant job. Carers only in once a day - looking to increase. They have no savings and little income. Do receive attendance allowance.

I’m trying to understand about NHS Continuing Healthcare. What is the checklist? Is it worth them asking about it? Uncle has been classed as GSF if that makes a difference.

If continuing healthcare is approved, what can it mean in practice?

(The main issue my aunt has is changing the pads and bedding. Uncle’s incontinence is loose BM several times a day. Which I think is connected with back issues he’s had for years and came to a head when he was ill with infections earlier in the year, but I don’t think there is anything they can do anyway.

So looking to see if NHS Continuing Healthcare could offer anything in excess of what will be offered by Social Services which is 4 x 15 mins visits a day.)

Go via the GP to community nurses and speak with them

Thank you. To be clear, I’m trying to understand what NHS Continuing Healthcare could potentially provide - is it over and above 4 visits a day?

Your relatives have to have health needs that can't be met by a carer. Incontinence isn't included. The health conditions they have need to be intense, complex and unpredictable. Its very hard to meet the threshold

I'm afraid that, based on what you have said, there is really no chance that CHC would be awarded. Not to say that you shouldn't try but, as above, there is a very high threshold of clinical needs to meet. The LA should reassess and increase the care package if needed.

My dad has been bed bound in a nursing home for 5 years- he has multiple complex health conditions that have been deteriorating for 30 years since he was in his late 40's. He has severe dementia, cannot sit unsupported, cannot feed himself, has swallowing difficulties, regularly looses consciousness, is doubly incontinent, has lost significant weight and has suspected bowel cancer (they can't give a definite diagnosis as they feel he is too unwell to survive a colonoscopy). He is not officially on 'end of life care' but we have been told by multiple doctors over several years that any one more thing (e.g. a cold or uti) would probably kill him. We have been turned down for CHC funding 3 times and are taking professional advice whether it's worth appealing again.

The system is a joke and I'm afraid there is no chance of your uncle receiving it from how he sounds in your OP (and even if by some miracle you did get it - they wouldn't fund any more care than what social services recommend). He needs to have medical needs that can only be met by a health professional not a carer. We get £165 per week funded nursing care (FNC) to cover the time taken to assess and manage his fluctuating medication needs - a small dent in a care bill of £5500/month.

Yes, it won't get you any extra care in the home but it does fund the care you do get up to 4 visits (but this should be provided anyway if they do not have savings and high enough income). If 4 x 15 min visits a day isn't enough then it will need to be moving to a home. My DF was assessed last year, scraped through the first (checklist) stage but came nowhere near the threshold in the full assessment. You have to have significant nursing (medical) care needs, not just personal care for toiletting etc. I agree it doesn't sound as though your DF is anywhere near the threshold, sorry.

He won’t get it if those are the only issues.

My Dad only got this when he was diagnosed with less than 6 months to live. Until that point, we'd only managed to get Attendance Allowance.

CHC is so discretionary. My FIL was bed bound, incontinent, had heart failure, semi blind with dementia and he was refused CHC. He died 6 weeks later. There is a statistic that a high percentage of people applying for CHC die within 6 months. There was a TV drama written by a high profile Northern writer, supposedly based on a real case. Sheridan Smith played the daughter of a woman applying for CHC. Sheridan Smith explained to the fictional committee that her mother was a member of the Labour Party and a really lovely woman. At which point she was awarded it. I now advise people to persuade their parents to join the Labour Party if they want to be given CHC (joke).
Seriously, it is unfairly discretionary. It is up to a small committee to decide. Most people will die before they are awarded it.
THe Drama is 'Care' made by the BBC in 2018.

It essentially means their needs are primarily healthcare related rather than social care, and so the NHS pays, and the care should in theory be whatever is needed to meet those care needs, so yes it can mean more than 4 carer visits a day, people with this level of need often need 24/7 care and a high level of input from qualified professionals such as nurses, physio etc. For elderly people if under CHC it would be far more common for them to be in a nursing home for that care to be provided (as opposed to an ordinary residential care home), 24/7 packages of home care under CHC would be more usual for younger people with very complex needs (or self funded of course). There's no harm asking your GP or community team about an assessment OP, but from what you've said they probably won't reach the threshold, simply having multiple conditions isn't enough, if those conditions can be managed by them or with carer assistance e.g. by taking medications and being assisted with daily living, in my unqualified experience you really only get it if you need 'full' nursing care daily I.e. complex/controlled medications or IV medications that can't be given by a carer, central or PIC lines, wound care, daily physio, PEG fed etc.

That being said it does sound as though their needs have increased beyond the one carer a day visit, get the social work team to do a needs assessment, I would have thought they can have at least 3 daily visits if not 4 given the need which should make a difference? Or is it possibly time to start thinking towards residential care?

As an over simplistic answer it’s equivalent to them needing hospital nursing care
not personal care and such like

there’s obviously a lot more too it but the bar is EXTREMELY high

Depending where you live, carer visits can be up to an hour not 15 minutes. The max tends to be 4 visits per day. Without significant savings there will only be a contribution

There is no authority in the country that would give CHC because someone had been in the Labour Party.

It's rationed to those very close to end of life because there is no budget for more than that.

Successive governments have failed to get to grips with the growing cost of care of the elderly and it's hard to see how they can. We all want public money when our family needs it but we don't want to pay for other families to get it.

Older voters were furious at the idea they might do without the winter fuel allowance and kick back hard at any suggestion of removing the triple lock. None of us want to give anything up. There just isn't a solution that voters will find acceptable.

@Idlewilder I know no local authority would or should give CHC simply for being in the Labour Party but that is what the 'acclaimed ' BBC drama, Care, implies. However, it is discretionary and not transparent. It is down to the ICB, a group of professionals who make the final decision.

CHC is extremely difficult to get. It is funded by the NHS, and there need to be significant medical intervention needed, that could not be met by carers and need to be met by qualified medical practitioners. There is nothing in your post that indicates that your Uncle would be even close to the threshold required to be awarded it.

What you need to look at is engaging carers, which would be funded by your Uncle privately, or by ASC if his assets are below the threshold.

I don't know that I agree about it being discretionary and non transparent. There is a fairly robust and transparent framework for how the decisions are made, and as you say ultimately it comes down to the judgement of professionals, I know you were joking about the labour party but the professionals really wouldn't know about political affiliations or other personal info like that. Don't get me wrong they're making difficult decisions but more along the lines of trying to understand whose need is greater than who 'deserves'

I'm not disputing that it feels really unfair and even arbitrary at times but I think the real reason is lack of funding and the need to make small budgets spread around a lot of needs - some of these complex packages of care really are staggeringly expensive and that can leave people with very real needs not quite meeting the threshold. The framework, checklist, decision support tool etc are all publicly available here...

https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/

The way that the palliative care nurse explained it, I thought it was for life limiting illness/conditions in the final stages.

My exact thoughts. My dad didn’t qualify even when he was bedbound, doubly incontinent, on a liquid diet and was so demented he didn’t know his closest relatives.

I would get expert advice.

Dementia and incontinence are not deemed health needs. They are deemed social care needs as they can be met by a carer not a nurse.

They will qualify for whatever the Local Authority feel meets their care needs, and it will be paid for by the local authority - I assume they are providing the one carer a day at the moment? It does sound as if they need a reassessment.

Our LA doesn't do visits under 30 mins other than in exceptional circumstances, even for 4 x a day.

If needs can’t be met by 4 x care visits then generally the next step is residential care; occasionally our LA will fund a live-in carer instead if it’s likely to be a short term placement.

Think of CHC as for people whose medical needs are so high they would otherwise have to be cared for in hospital with 24/7 access to nursing care, specialist equipment etc etc. Your uncle is nowhere near that at the moment.

I think to be honest, the real problem with the system isn't CHC. To me it's right that there should be a separate process and funding for people with really complex medical needs, sometimes relatively young or very young people, to enable them to live in the community rather than being stuck in hospital. That seems a very separate thing from the needs of elderly people who are increasingly frail and with a growing number of comorbidities including dementia but still just about able to cope at home rather than needing residential.

The real scandal IMHO is what we consider and accept as a minimum need and what a minimum package of care for someone like the OP's parents looks like - even 4 visits a day with say an hour morning and nighttime and 2 x 30 mins at lunchtime and teatime (not untypical, even on the generous side) is really only just enough for keeping body together (forget soul), in/out of bed, washing, dressing, toileting, medication and getting food/drinks, with probably time for some bare minimum housekeeping like laundry and washing up, that's most likely it. No real time for say helping them stay physically active, social connection/chatting, maintaining their house, helping with life admin, getting to the toilet or fetching a drink, outside the 4 times a day carers are there, never mind getting out of the house other than for medical appointments where you may be lucky enough to get transport - all this you either have to pay for yourself, have family do for you or sometimes rely on charitable services if you are lucky enough to have these, or it simply doesn't happen, or not frequently anyway. I quite understand why families feel it's not enough and want more from the state than this bare, bare minimum particularly if self-funding isn't an option for their relative, but CHC isn't really the answer, either we have to fund social care far more for domiciliary care or accept that this is what collectively we've chosen for our poorer elderly...

Ok. He was in a nursing home and was being looked after by nurses. He had Parkinson’s and dementia.

Most would choose this over a care home as they sometimes don't do much more than that either.

When you say GSF do you mean on the gold standards framework? It’s a register of patients where the GP has identified that they may be in the last year of life.
PP are correct that based on your description, your uncle won’t meet the threshold for CHC.
However if he is thought to be in last weeks of life, there is fast track CHC which doesn’t require evidencing complexity, intensity and frequency. It does require a medical professional (usually community nurse) to say he is in last weeks of life. It would be reviewed and removed if he didn’t die within a specified time period (6-12 weeks).

In terms of what fast track CHC provide, I can only speak for my area (Hants).
Up to 4 x visits a day with 2 carers.
visits are usually 30 minutes morning/evening and 15 minutes in between.
These visits are scheduled, not reactive.
No night sits.
No domestic chores other than heat a ready meal or make toast/tea
Or they will pay for residential (but doesn’t sound like what your relatives would want?)