To be shocked that Derek Draper didn’t qualify for NHS Continuing Healthcare

[Mum1976Mum]

Just sat down to watch the latest Kate Garraway documentary. I am absolutely shocked that Derek didn’t qualify for NHS Continuing Healthcare funding as his needs weren’t deemed high enough. This funding isn’t means tested so how much money they have isn’t relevant.

I have some experience of this as we had to claim for my grandad about 8 years ago. He had sarcoma and had to have his leg amputated. He had a prosthesis fitted and was actually pretty active! He could do a lot of things for himself but struggled with self care (showering) and he qualified for the funding.

I honestly thought that, should the worst happen, and someone needed a substantial amount of care that they would qualify. Watching the documentary, Derek needed help with absolutely everything! How on earth did he not qualify?

It may be because of the cancer diagnosis. They could have deteriorated at any point and once she did she would need nursing care. Also as its terminal the award is finite.

My DM has dementia and is bedbound, unable to communicate, immobile, doubly incontinent, only able to eat puree and thickened drinks. She qualified for CHC for a few months when they thought she might be deteriorating fast. But she stabilised. So basically, as she isn't dead yet, she no longer qualifies.

Just as an aside - she's been in a care/nursing home for 13 years. I estimate that the cost of her care (wholly self funded apart from the short period of CHC) has been around £500,000. All from the sale of her house, her investments, DLA, and state teacher's pension.

To qualify for the funding you have to be deemed as having complex needs - so, if it’s a case of ‘only’ needing help with personal care and connected issues, it won’t be approved. My mum has vascular dementia, osteoporosis and advanced breast cancer. She’s 94, doubly incontinent she’s had two strokes and needs help with every aspect of personal care, plus meds, eating and physio to help with limb function.

She’s a massive fall risk and has been hospitalised three times after breaking bones. She’s been assessed twice for this funding and each time has been refused as not ill enough. The last time she was hospitalised we were told she qualified for four weeks free care at home, so the bed could be freed up for another patient. Half the time the carers were so late l’d done most things myself, and l could write a book about the issues involved. After the four weeks we received a bill for £800 after being told ot was free. No argument, pay up, she doesn’t ‘qualify’ for the free care after all. It’s a joke. Elderly and vulnerable people are being ripped off because the system is broken and no-one seems to want to fix it.

"From each according to his ability, to each according to his needs"
Karl Marx

This is the very essence of the tax system. You shouldn't expect to get more out because you pay more in.
For Labour counters - this is a basic principle of socialism.

He would have qualified for the maximum of 2 x carers x 4 visits a day. But Kate wanted round the clock care hence paying for it. There is an ocean between his medical needs and what she was prepared to do herself. I feel really angry that Derek's medical needs were sold to the highest bidder, the poor sod had no dignity in life or death. His private medical information should not be public fodder like it is.

Can we let the poor man rest in peace now?

We were told DF didn’t qualify for CHC funding when he had a terminal brain tumour. He was like a 16 stone toddler, couldn’t move, couldn’t string a sentence together. Rapid decline. Along with siblings, fought the system. Gaslit all the way. No one liked us knowing our rights. Decision finally overturned when it came
to light that the paperwork had been completed saying he’d had a stroke. Shocking levels of incompetence all round. Made a horrendous time doubly so. No one covered themselves in glory. Social services were a joke, expecting one of his DC to move in and take care of him, despite living miles away and all having our own young families. Lies, lies and more lies. Told we didn’t care enough, it was our duty, no money for anything…

Finally given a fully funded place in a care home, where he went on for another 4
months or so. God knows what would have happened if we hadn’t been there to fight his corner.

Taking a step back from individual cases, the funding is the issue. There are three ways to do it

1. as it is now, which is a lottery depending on area and illness/ needs as has been discussed in much detail on this thread - in some cases very unfair
2. nationalise care and make it part of the health service- this would obviously require tax funding. It’s also still “unfair” in some respects as everyone who can pays the tax yet not everyone will be a recipient of care. However you can say the same for education, acute hospital stays, etc, and we all agree the social contract is that we pay for services we might need at some point. It would also provide some peace of mind (at least to the level we all have about NHS treatment now: we can get treated free at the point of need and we know we won’t go bankrupt like in the US; the struggles of the NHS are a whole other thread).
3. there could be insurance for it (which there currently isn’t). That would in effect be admitting it’s never going to be state funded and would be a privatisation of the funding if not the provision. But the thing that strikes me is, having worked in insurance in the past, it’s normal to purchase insurance for the things we think might result in a catastrophic loss: a bad car accident, your house burning down, life insurance for dying young with dependents. Some of these are legal requirements, some are optional, but they’re there. Yet all of us face the possibility of effective total financial ruin over care and there is no insurance available against it, unless you buy an annuity which is a bit different and more costly. It probably goes to show that insurance companies know it’s more or less uninsurable (predicable losses) which also means unless there is some state guarantee they won’t do it (like flood insurance). So around we go…

On people living longer: my auntie died of dementia at 85 and her last year was a living hell. When younger she survived breast cancer and latterly she had high blood pressure controlled with medication. My parents are in their 80s and 90s, living at home and doing ok, though frail. But I can think of incidents for both of them where they would have died a decade ago were it not for modern NHS treatment: my Mum had a heart valve repaired and my Dad has a pacemaker. They have admittedly otherwise lived healthy lives, but you’ve got to wonder whether keeping people alive 20 years longer than “three score years and ten” is really worth it. And yes I’ll be keen to live a long life myself - but only if I can be independent. On a societal level, it’s such a shit show.

There is a horrible macho culture in the NHS right now. I was in a meeting recently and heard a colleague refer to the "Pathway 2, stagnating in bed 4", just an awful way to talk about a human being. The colleague did not even know her name.
It makes me so sad. I used to be proud to do my job (30years NHS experience) now I am almost ashamed. I am on the side of the patients and their relatives but I'm working in a system that does not allow me the time or resources to do my job anymore. It is literally all about freeing up beds, I feel that one day we will look back at the discharge to assess initiative in the same way that we look at the Liverpool pathway for the dying (ie barbaric). The whole system needs to change, either fund it properly, move to a European health care model or have a public awareness campaign to spell out the situation truthfully for people in England so that they have an accurate expectation of what will happen and how much care costs.

As it is I feel like I am doing the dirty work for the government and the worst part is that families see me as part of the problem. Shoot the messenger and all that.

If that was the way it worked, then we should all be charged for medical treatment. Thank goodness we aren't.

I work in Healthcare and it is very unusual for people to qualify. Here is a link to the assessment tool. I think the key thing is that the level of need has to be to the extent where is is almost unmanageable without skilled nursing intervention in 2 domains or that level in one domain plus high level in 4 other areas. The patients I have seen qualifying have been very hard to manage in hospital due to several risk areas including behaviourally. Being bedbound is not difficult to manage in itself. Having an unstable medical condition, pressure areas that are deep and not healing, high choking risk, high agitation and refusal to accept treatment and care are areas that might meet threshold.
Fast-track CHC funding is different and used when people enter the terminal phase of their illness.

DH Title (continuing-healthcare.co.uk)

No, not shocked in the slightest.
The “care” system in this country is absolutely shot to pieces. I applaud Kate Garraway for doing that documentary - it makes people realise that if she couldn’t afford it on the money she gets (half a million a year from GMB alone) then what hope have the rest of us got?

My DH’s late grandmother had a series of strokes, but because she owned the house she had bought in 1957 outright, was classed as “independently wealthy” so got no help. She eventually had to go into a home because her son (my FIL) was also terminally ill and my MIL was his carer.

At £2000 a week, they sold the house but that soon went, as you can imagine. Then, once she had nothing left, she suddenly qualified for support.

And my aunt was in hospital for 15 MONTHS because the council could not agree on a care package for her and the choice was that her family take on all of her care (which meant one of her children giving up their full time job) or the carers came in, there was no middle ground.
But if one of them DID give up their job to care for her, then that was classed as “voluntary unemployment” and they wouldn’t get any benefits themselves.

The two biggest surprises for me were

A) People are surprised that this goes on. It’s happening everywhere, every single day to families all over the country

B) No one is asking the big question. If his care (any care) costs £2000 a week, but carers are among the lowest paid workers in society, who is charging those kinds of sums, and how? I think the answer is obvious, but why aren’t we getting more angry about it?

Care of our elderly and disabled people is a complete commodity now and no-one bats an eyelid until someone off the telly tells us to.

I think this is the point. If things like PEG feeding, dealing with drugs, dressing changes and stomas are not health issues it knocks out so many people who do in reality need pretty sophisticated nursing care. There needs to br a re-evaluation but it's not going to happen foreseeably.

The NHS is supposed to be free at the point of need, regardless of your financial means. This is a point of need.

This is why Theresa May wanted to bring in inheritance tax (which nearly cost her the ill advised 2017 GE).

She wanted to end the care lottery where families lost their entire life savings due to needing to spend everything on care fees. Instead she wanted inheritance tax to go towards adequate care for all and to not leave some families - especially where one partner was still alive - left in similar situations.

But the public HATED the idea and it was raised on doorsteps by many conservative voters as a problem for them.

Whether you liked May or not, this was an attempt to fix this exact problem - which is a rarity in politics today. It's rare to see politicians even to attempt to solve difficult issues. I don't particularly like what was proposed but I don't know there's a better alternative. It highlights our issues with populism in the UK where things are going to shit because voters don't like hearing difficult messages. The public must accept a huge amount of responsibility on this particular issue because it's unlikely subsequent governments are going to go near the subject for a generation as a result. Inheritance tax was probably the fairest and easiest way to fix the issue. The alternative is to put the tax burden on the working age group who are already struggling with housing and pensions to a degree that retired homeowners are not.

(Keep in mind over the course of lifetimes, boomers will be net tax beneficiaries, whilst those under 40 will be net tax providers as it already stands - largely due to demographics and an aging population profile. This issue is only going to get worse).

If you have a family history of certain conditions you would be wise to plan accordingly I'm afraid.

She dragged him to Mexico in his fragile state to put him through experimental treatment she wasn’t even with him he had a heart attack there a was brought back to die . She has used him for monetery reasons and to look the matry
they should pay they can afford it my cousins little 13 year old girl was not granted any and she died of a brain tumor . Luckily we had lots of family that stepped up I know my cousin is very grateful for us all chipping in .

‘Continuing healthcare’ exists on paper, but in theory, it really doesn’t. So he hasn’t missed out on too much. Bil had a stroke, and despite being offered this, it really is none existent, unless you continuously chase them up because they don’t bother following through.

or have a public awareness campaign to spell out the situation truthfully for people in England so that they have an accurate expectation of what will happen and how much care costs.

See my previous post. The public don't want to hear it. If its not their current problem they aren't interested. It's either to far in the future for them and they already are struggling financially or they are too focused on giving their life's work to their children and grandchildren and don't think it's 'fair' that it should be taxed.

There isn't a 'soft spot' where the public feel fully engaged / affected by this issue to a high enough degree to get traction as an issue with enough popular support.

That's what is leaving people in this situation: the public don't care enough.

That and industry profiteering. And government isn't going to look at that because of the risk of the collapse of the existing system. It doesn't have the means to bring it back under public control.

I’m sorry to hear. We had a very similar experience with FIL. Social services expected me to move 250 miles to care for him when I was already a carer, ran a business full time and had dependent children. I have some sympathy for over stretched social workers but really.

It is so infuriating how social care has been neglected. Theresa May tried to get something started if I’m remembering correctly, but the Tory party were more worried about upsetting their core voters than tackling the problems.

This didnt just happen overnight. Tory supporters have spent 14 years voting for it.

You work full time and are a carer full
time.....it’s what I had to do! Not easy as my job was a high pressure City of London role. Worked out what was the minimum I needed went from there. Basically life is just caring and working. There is zero help - I tried everything, GP, CHC, MP, Cabinet Office.....basically there are a lot of people that are too well off but can’t afford to buy it in. Plus the care offered by the social care system can be dire - not the fault of the carers, they have too many appts...and not enough time to get to them.....and they can’t afford to be travelling via tube or taxi - so bus it is!

My advice to those wanting to gift their houses to their children is to help them out now if you can. In reality, most of us live well into our 70's/80's and by the time our kids inherit from us they have survived the most expensive stage of life . Our kids need help to get deposits down on first homes and help their kids through Uni etc. Our plan is to downsize when they have all been through Uni and give them a chunk each when they are buying (if any of them can afford a mortgage by then!) and then we are left with a small property and our pension and when that runs out we will be at the mercy of the state.
I have an extended family member whose home is worth millions. He has fully funded care ( 2 carers 4 x daily) as his income is poor(on paper)
I do not think this is right but bringing in policies around this area appears to be political suicide so it will be a brave party that eventually decides to tackle it properly.

It’s very scary to think there isn’t care provision there for those who need it. Most people couldn’t afford thousands per month for very long, even if they sold their house (assuming they had one).

It wasn't the Tory party that had a problem with it. It was undeniably Tory voters. That was the issue. They were getting so much negative feedback on doorsteps about it that it was impossible to ignore.

Those talking about getting rid of assets eyc that won’t help in these situations as CHC is NOT so come based
CHC is not “ care “ or is medical interventions.
social care maybe for living costs in care homes but they are 2 different things

you will get very basic care

I agree that most of the public doesn't recognise how bad things are in terms of social and medical care. There are so many posters here demanding that 'They' ( quite who they is ) pay for everything. Posters who complain that having worked for ten years they deserve paid time off to look after their children. There is a huge disparity in working conditions between those of the average 'carer' and the conditions of a cosy wfh job that so many Mumsnetters appear to have. There was a post from a woman the other day needing a job, however she was very picky about the kind of job she was prepared to take.
The UK desperately needs carers. The recruitment and retention is at crisis point. Pay is very poor. Very few unemployed UK citizens are prepared to consider caring as a job so we have to recruit from overseas. The situation is only going to get worse.