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?

Yes you are right, the terminal disease was when the fast track CHC kicked in. Problem then was that there was nowhere for her to go. Assessed as not suitable for care at home package and then refused by numerous care homes as unable to meet needs because she still had some mobility and her behaviour was challenging. She died after two months in a completely unsuitable hospital environment. As a family we’re still traumatised by it. I complained and got an apology 🤷🏻‍♀️

My point though is that when she had a Parkinson’s dementia diagnosis she met the criteria on that CHC checklist. The person who came to do the assessment seemed determined to argue every point and “down mark” It was the most undignified horrible process. My mum was a teacher she worked hard all her life, she was treated appallingly by this country at the only time she needed help.

Our local hospital was acting in mums’ best interests by enacting a DNR - she has advanced vascular dementia and the consultant told me, as her LPA, that if she had a stroke or heart attack at this point, her quality of life would be nil. We weren’t asked, we were told that this was what was happening, and I was given the ‘purple slip’ containing the decision to give to GP or paramedics if she was ever in the position where resuscitation was needed. All well and good but when mum was admitted to hospital last year after a fall, a copy of her discharge notes were passed to the care company responsible for her temporary care on leaving hospital. On reading our copy of the notes, they stated ‘for full resuscitation’, which meant that had the situation arisen while carers where in attendance, they would have resuscitated her. It’s sorted now, but it’s scary to think that if I hadn’t spotted it, they would have gone against the DNR and mums’ own advance directive.

DM was double incontinent, couldn't talk, walk hardly ate down to less than 5 stone.
Her assessor argued every point. Told she will get better.
Died 10 days later.

Mill heart failure, kidney failure, liver failure, double incontinent couldn't walk.
Different assessor again argued that mil could get well.
Died 2 weeks later.

Sweden has much better care in general because they pay miuch higher taxes than we do.

Unfortunately, the vast majority of people in the UK who could pay more tax do not wish to do so. They want the NHS, education and care (including elderly care) paid for by the state but don't seem to realise it would require very large tax increases to pay for it.

For MEDICAL needs not personal care/social needs.

Kate wasn't talking about the tax payer funding his care, she was asking how most ordinary people are able to function within this system. My son receives CHC, we are in an exteremely different situation to them financially, there IS NO CARE. I am lucky to be able to work a handful of hours per week from home in a flexible role. It would be impossible for me to hold down a job outside of the home in addition to caring. Even when i have a couple of hours care, i often spend it chasing one NHS department or another. Its people like me Kate was asking how do we manage, and the answer is, largely, that we really don't manage all that well. We exist.

Chc is about complex unpredictable changing care needs with a medical element.
it does not mean that you have a need for ongoing ie continuing care .
for example a person who has very high - but predictable needs is not likely to get it if it is a managed predictable need.
a patient who as multiple prolems in many of the care domaims they asses it on but is predictable may get it - but it is granted when people have complex AND unpredictable nursing elements - eg such as someone who can lash out , refuse meds whch may impact health care of skin amd many things kike that.its a very high threshold.

😰😰😰😰

Normal people wouldn’t expect a £16k per month care package. Normal people have the state help them - although it’s never enough. As you rightly point out, many (not all) normal people have family members who sacrifice a huge amount to help their loved one. Normal people accept the care they receive isn’t “gold standard”. It sounds like she was paying for 2 live-in carers at a minimum. That is almost unheard of!

Neverpostagain i used to fight that system weekly in chc meeting s .

Ps .I dont know the indovidual details of this case .

Councils are frequently going to court with these sort of set ups, and often winning. I wouldn’t rely on them.

My father flatly refused to fund my mother’s care or his own so every time a limited care package was started to get one of them out of hospital he’d stop it as soon as they became eligible to pay (plenty of money including Attendance Allowance at higher rate for both of them). So mum would fall and get re admitted and off we’d go again 🤬
I was at my wits end, eventually I threatened to get safeguarding involved.
It wasn’t unusual to come across this in the community; the attitude that someone else is responsible for funding is rife amongst the older generation.

Says it all doesn’t it ? And we were told CHC isn’t reliant on a terminal diagnosis - that’s hospice care. It’s supposed to be the assessment of the effect and management of the condition itself, and we found, like yourself, that every point is argued. It’s a nightmare.

Well, that's as maybe, but it's not means tested. It's assessed by clinical nursing needs, not care needs.

I was appalled. I think it’s time to rethink social care and medical care altogether. If we only funded medical ailments that are illnesses such as long Covid, diabetes, cancer …….and social care fully if you cannot look after you own personal hygiene and/or feed yourself we would probably be in a better place financially and morally. The current situation is unsustainable. The NHS is a bottomless pit for funding (and whether we like it or not some of this is down to inefficiency) which is unsustainable and social care workers provide an essential service on a minimum wage and a zero hours contact which is also appalling. Something is very wrong somewhere and we need to take personal responsibility for sorting it out; our politicians don’t care, Labour or Conservative or any other flavour have no desire to be radical and sort it out.

Neither would I. Mum and I own our home 50/50 and I’ve been told that they won’t include it in the financial assessment because I’m over 60 and disabled. They would also assess her half as being worth nothing because you can’t sell half a house. Was told that these are practically the only circumstances in which they disregard the persons’ home. However, if I were to sell up to downsize before mum passed away in care, they would then take whatever fees had been accrued up to that point.

Because being bedbound doesn’t necessarily mean you need daily nursing care.

I agree the whole system needs change, there seemed to be some political will to tackle it about 15 years ago but it came to nothing probably because of Brexit and short termism. I seem to remember a proposal where people would pay a lump sum assessed on means on retirement. I remember my parents talking about it positively (and they’d have had to pay a lot) because one of the things they found worrying (as do I) was the uncertainty about what the care you would get would look like and how it would be funded. They’d have preferred to pay a fixed amount for future care which they could budget for and would give peace of mind even if they didn’t ultimately need it.

I think most people accept that you should contribute towards the cost of your care in old age if you can but there does need to be consistency fairness and transparency and also good quality care and carers. Some of the care homes we saw and the standard of care given were shocking, you can see why people baulk at paying £2.500 per week.

@Babyroobs Babyroobs
"Once savings get below £23250, it become funded or at least partially funded."
And the 23,250 includes the value of your house, so most people with a house would not get funded.
I speak as someone whose DM was in a Care Home for many years. The criteria for CHC was even then very tight, and after some years (as her condition deteriorated) we applied for CDC, which was turned down.
We appealed and eventually it was given.
My DM had demetia, but was also bed bound after a massive stroke, but her care was considered social care rather than health care.

I had a similar experience with LA carers for mum. They were supposed to call four times a day - in practice it was three because a lot of the time, they were so late in the mornings that by the time they arrived mum was up, and I’d had to shower her and change the bed because she’s bladder incontinent. On the days they did arrive in time for morning care, half the time they left her unwashed. I only found out after a few weeks that the directive was to ask the patient if they wanted to wash/shower and if they said no, they couldn’t be forced. Mum has dementia, of course she’s going to say she doesn’t need a wash. Apparently they were incapable of recognising that someone who has wet the bed needs more than a wash down with wet wipes.

I stopped the carers after a few weeks and found a private company who sends in two carers every morning - same time every day and mostly the same people, for a full hour. That’s all she actually needs. It’s more expensive, but she gets the full hour we pay for and the care is targeted and excellent. And they don’t sit outside the house for ten minutes before and after each call because they’re GPS tracked !!

But we also shouldn’t be expected to contribute part of our own funding pot towards funding people who haven’t made their own provision - which is what happens at the moment.

Ha ha to that...

My DD was a carer whilst at Uni, she most certainly had to do medical care, administer drugs, change stomas, bed sore care, fracture care...

... the Govt has moved the goal posts so that medical care is now classed (in the community) as "Social care"

This country is a fucking joke.

Wouldn’t disagree with anything you’ve said, but the fact is that just being bed bound won’t qualify you for CHC. You have to have a clinical need. As an example, my relative is bedbound and has daily carers. LA won’t authorise night care, so they put a pad on her during the last call of the day and she’s expected void herself into the pad and then to lie in her own mess until the first carers arrive in the morning. If they’re happy to subject someone bedbound to this indignity, they’re not going to authorise CHC just because they’re stuck in bed.

Agree, it’s all very well to say people with assets should self fund (and I agree to an extent) but there will be consequences. My aunt gifted her pension lump sum to her children on retirement (so well before she could accused of deliberate deprivation of assets) and is currently burning through her remaining capital because she doesn’t see the point of keeping anything for her future care based on what she’s seen happen to her sister and her parents.