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?

My dad got it for vascular dementia, which people often don't - it does seem to be a lottery as to who does and who doesn't qualify.

I can see how the NHS is situated

So much wasted money

They are an organisation who would rather save £50 but don’t appear to see the £50,000 that it ends up costing them

£16k a month would never ever be paid by a local authority or CHC for someone similar to Derek’s care needs. While I am very pleased to see the plight of many families being discussed in the media thanks to Kate. On no planet would 99.9% of people have care costs that high.

I have seen some highly specialist care home or supported living placements cost that much. However, this is for people with complex needs predominantly learning disabilities and autism. Often the high cost ones are because the person has (physical or mental) health needs too.

Derek received what none of the posters would have received during that period. They went over and above what was given to the ordinary folk on whom DNR orders were slapped. A DNR was slapped on my sister and she did not have COVID, she only had pneumonia. After they slap this DNR, the attitude changes - the first type of antibiotics was not making any difference to my sister and they were not even reviewing them, they just continued with them. It took threats from a friend, a consultant, to change the antibiotics to save my sister. Kate should be aware that what was done for him was never done for the likes of us. My sister does not remember much about it, but I shall never forget that when I tried to resist a DNR, a ghoulish stare of theirs and a ready reply 'you can't request a treatment on the NHS and resuscitation is a type of treatment'.

Well this is depressing. My husband (59) is 10 years into Parkinson's and has rapidly advancing dementia - Parkinson's means that some of the time he is rational and knows that he is 'losing my mind'. We pay for part-time carers, but he isn't really ok alone, and I will have to stop working at some point to look after him. I must admit I'm dreading it. I can just see our lives becoming more and more restricted with no hope of relief...

My mil has to pay the full amount and doesn't have any savings. She owns a normal semi and has part of my fil pension since he passed. She is in debt with the council. She is doubly incontinent, bed bound with MS and other complications.

Exactly this, their main residence would be disregarded (regardless of its value) due to two disregards, spousal and children - but the other home would be counted and be expected to be sold.

This would apply to anyone, and in my view is sound, you don't need two homes, its a luxury, so the state should not be funding where someone has such considerable assets.

I'm assuming she has a deferred payment agreement with the council - this means her home is hers for her lifetime, but on her death it must be sold to satisfy the DPA and then any residual amounts passed per her will.

Surely that is a fair system? she has no risk of loosing her home in her lifetime and the debt isn't due until after death.

Note that is for residential care - if she is being charged against her home for homecare you need to consult a solicitor because that is forbidden under the care act.

I had bunions that were very painful. They said I didn't qualify for the NHS funded operation, as it didn't affect my mental health (I didn't cry in front of the GP).

I'm not sure how to read this... Are you saying if we won't can't fund someone's care adequately we should just bump them off? Can you imagine living in a society that values the weak and vulnerable so little that their worth is reduced to their effect on a balance sheet?

This.

They almost killed my DM, she had an op for a fractured femur that went well, but she has a tremor that was made temporarily worse by shock - which meant she could not hold a cup or cutlery.

They said they didn't have time to help her eat and drink despite me repeatedly asking - after 2 days she suffered AKI due to dehydration - I asked the sister if I could nurse her myself, which she happily agreed to, so I spent 12 hours a day on the ward for a week, helping her to drink as she needed - and she made a full recovery.

She was on a ward of 4 and I ended up looking after all of them, doing all sorts of tasks.

NHS fuckers didn't even offer me a cup of tea on the tea rounds!!

That is one example you are quoting of a family that has assets on a thread where lots of people have given accounts of their own relatives with a small household income. This is a non means tested benefit. I had no idea that a bed bound individual with MND wouldn’t be able to have their care needs paid for. No wonder there are so many ‘bed blockers’ in hospital.

What "strong incentives" would they be given, exactly?

This is a bit long but its something i feel very strongly about.
As many of the posters have said there are 2 streams of funding. Social care which is means tested and CHC, which isn't. Within CHC itself there are 2 funding streams. CHC funding and Fast Track funding, which is for patients with a very limited lifespan or a rapidly deteriorating terminal condition, to allow them to be discharged from hospital to die at home. Fast Tracks should not be questioned and the decision of the clinician should be accepted. I currently submit these applications and they are frequently challenged and more information requested. The delays often lead to patients dying in hospital and not at home with their families which was they're last wish. I find it moraly wrong that this happens. Working in another area some time ago which did the assessments for CHC, once the assessment was done it had to go to a panel for approval if you had said they qualified for CHC. I have known the panel to have no general nursing experience consisting of someone from finance and an other. Therefore they may not understand why your clinical opinion is the person qualifies and again this leads to exyended delays.it also on occasion felt like the panel was looking for reasons not to fund before you even started. So in submitting positive checklists you always felt on the back foot before you even started. There are undoubtedly people not receiving funding for care that should be. Appeal the decision get help from outside sources, go through the paperwork and make sure anything 'out of the ordinary' such as timed medication, unstable diabetes, significant pressure sores etc is highlighted. If you feel you qualify don't just accept the initial decision.

But we already do this, the NHS has a formula for calculating the value of a persons life and whether its worth the effort or not.

Its not unique to the NHS, it exists in one form or another in most countries medical systems, private or state funded - the older you get / more disabled the less worthwhile you are preserving - its cold - but is also logical.

My mum had a catastrophic stroke during an operation. Paralysed, incontinent, only supervised soft food and drink, massive weight loss, developed psychosis - grim and shocking. Very high needs.

We went to the MDT meeting 4 months in and were asked if she would be paying for herself ie how much money did she have? I said " We're thinking she might qualify for NHS Continuing Healthcare"
A frisson of shock went round the room - I'm not joking. It was like they'd been rumbled.
No one had mentioned it in 4 months but I had heard about it and read up.

We ended up getting a specialist solicitor who was experienced in the ways of the NHS and very helpful. Money well spent.
She got the funding but, without an advocate or two, I doubt she would have even been considered.

I was told recently that the NHS budgets £70 billion for mistakes, legal claims etc. No idea if it's true. The system's a mess though.

Good work!!, as corporal jones would say "they don't like it up em"

They keep all this stuff, CHC, property disregards for care etc. all under the radar unless you research it and just hope people will cough up!!

Honestly?

I think this is already in progress in terms of policy. There will be popular support at some stage precisely because old and disabled people will be perceived as a financial burden on society.

It's already happening to a degree elsewhere.

It will be dressed up as being about dignity and being treated less well than a dog but I think the reality is that it will be driven by financial considerations and people wanting to keep their inheritance and the pressure that puts on elderly and disabled family members.

Absolutely.

What you're saying here is that tax payers who DO own homes should pay for those who don't own homes AND pay separately for their own individual care. Which is absolute nonsense! Why should people be penalised for owning their own home?

DHs friend who is a doctor calls Christmas 'Granny Dumping Season' because families won't come and help their elderly relatives get out of hospital and just leave them.

But it isn't surprising given where the care burdens lie and how there are huge implications to it.

I get that doctors have this black humour but I've also found this particular attitude awful because its coming from a profession which is generally well paid. It's completely insensitive to why families feel unsupported and unable to cope with elderly relatives.

I worked inn soc services years ago - I too thought that but have not seen the preramme

I suspect she got funding because of her life expectancy after the tumour diagnosis. Sorry MrsGalloway, it's a shit system, but although PD is a horribly debilitating disease (or can be) it tends not to kill you, but unfortunately brain tumours (type dependent) do, my guess would be your mum had a glioblastoma (very aggressive). It still sucks though, but that's probably why your mum got funding.

You can see the checklist criteria here: https://assets.publishing.service.gov.uk/media/630399dae90e0729db4b59f9/NHS-Continuing-Healthcare-Checklist-guidance-2022.pdf

I don’t know anything about Derek Draper but I assume that his healthcare needs weren’t complex enough to qualify, even if his social care needs were very high.