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?

She did take him out of hospital against his medical team's advice. I remember at the time that they felt that he should be allowed to die because of his prognosis. Without the private care she funded he wouldn't have lived the four years that he did. I've mixed feelings. We don't fund children's hospices and there was a news report on how families aren't getting the equipment to give the children the quality of life that they could do. We budget everything, so the decisions are already in place about who lives and dies. For me it comes back around to how long past the natural age of death, or in what state do we keep people alive. On the other hand I'm a die hard socialist and Brexit, austerity etc should have saved us money. Wasn't we told that the NHS could have millions extra? Then there's the waste and mickey mouse contracts for the mates of Tory ministers. We need to look again if care at home is sustainable and rethink the use of different types of residential care.

This. And it’s not about inheritance. When my mum was in a care home (physically disabled, not dementia) we just worried about whether the money would run out and she would be moved to a cheaper room or another home, and be left with a tiny bit of pocket money to cover her clothes, entertainment, house-plant habit etc.

It’s barbaric and inequitable. There should be a system of social insurance to ensure we all get a decent standard of elderly and disability care. After all, nobody knows whether they will need it. Any one of us could become disabled today, with no access to CHC when we left hospital.

My Dad got it, but he got it because he needed a lot of nursing. Social care needs aren’t covered. We downloaded the assessment tool, and it basically covered complex medical needs.

A relative of mine qualified for CoC payments. Their needs were solely based around care (they had terminal cancer but weren't receiving any active treatment for this due to the poor prognosis; they were bed-bound due to losing use of their legs as a side effect of the cancer, so the payments covered nursing home fees as they weren't able to manage at home). This was in 2018 so funding rules may have changed.

On the other hand I'm a die hard socialist and Brexit, austerity etc should have saved us money. Wasn't we told that the NHS could have millions extra?

Why did you think that Brexit and austerity would save money? Bizarre thought processes for a socialist.

It always help to know what you re talking about before opening ones mouth or risk looking like a fool.

Since when was this type of care "means tested" ? read the thread.

It’s because it’s not technically nursing care. He was very disabled by his condition but didn’t need a nurse only a daily basis, just carers.

That said, it’s a postcode lottery. A friend of mine’s mother has just qualified with late stage Parkinson’s but still only needs carers - probably comparable to where Derek Draper was - her DH is 97 so can’t provide care or fund it himself. But as it’s late stage disease - there’s an end point in sight, that may be a factor in the decision.

Well, we know how, but we just don’t want to pay for it.

This is sickening to read. What a mess this country is in.

I recently lost a close relative. We were waiting for her to be assessed for CHC but she died in the meantime. She was elderly and the care home she was placed I was absolutely awful. There was barely any care even though it was meant to be full nursing. She died a painful, uncomfortable and neglectful death. However, I'm now looking at this in some ways as being a blessing as being kept in that place for even longer would have been dreadful. We were looking to move her but who knows if the next home would have been the same or worse. We have raised safeguarding concerns and complaints with the company and with the QCC.

They’re wealthy though, so don’t need it?

My dad had a brain tumour and needed help with everything - feeding, using the commode turning etc. My mum had carers come in 3 times a day, all fully funded, it was such a comfort and none of it questioned.

If i remember correctly, there was a caveat that because he had a terminal diagnosis (which a very poor prognosis), it was different to something like Alzheimer's.......

All of this.

If you keep wanting to pay lower income taxes, lower VAT, lower council tax, no IHT and you voted for Brexit then you are part of the problem.

I think Kate Garraway has been extremely brave in speaking out. Yes, she is a high earning prominent public figure with the means to pay for care. And she of all people knew that her comments would lead to the kind of “no sympathy, she can afford it” responses of the type we are seeing on this thread.

Of course her circumstances are far less desperate (from a financial perspective) than the vast majority of people in a similar situation but they are forced to suffer in silence whilst Kate is able to use her celebrity and connections to bring the dire situation to wider public attention. Without her, we would not be having this discussion and the vast majority of people would be blissfully unaware of the fate awaiting so many of us. To those struggling with the demands of providing and financing care, she is not the enemy, and may well prove to be your greatest ally.

I line manage someone whose mum has very extensive care needs - she is bed-bound, can't feed herself or go to the loo by herself, she is non-verbal, constantly shouting out in pain etc. She can't be left alone and his elderly dad can't cope any more. My staff member and his sibling are both at breaking point with trying to help, but apparently she doesn't qualify for continuing care. The mind boggles.

I know that resources are stretched in the NHS but this seems like a false economy to me. The long-term impact of failing to provide appropriate care for one individual is likely to have a significant impact on the health of other family members which the NHS is likely to have to pick up. Plus in many cases, people will be forced to give up their jobs as it simply isn't sustainable for them to care for their relatives while working - so the government will lose tax revenue/spend more on benefits etc.

Spain (depends on the region): my mum (dementia but mobile and no additional needs) gets €650 pcm to help with her care at home. It’s not means tested. It’s not great in the sense that it’s the maximum amount for care at home chosen by the family in any circumstances in this region but it helps.

We have chosen this option, where we choose the carer/carers but if you accept carers from agencies, they approve a number of hours of care per day and pay directly the carer via the agency. I understand you cannot get 24 hours care under this scheme (they would place the person in a care home) but I know a lady in my hometown who gets 2.5 of care 3 times a day (morning, lunchtime, night), so 7.5 hours per day and it’s “free”.

If the carer is a relative, up to third degree I believe, and this person cannot work due to the care duties, you can also choose to get NIC paid for this person so the time as a carer counts as effective worked time towards a pension or other benefits.

In this Comunidad Autónoma (region) there are regional government subsidised care homes where there are no fees (but not enough places, obviously, a friend’s mum was in a waiting list for one of these for nearly two years) and also subsidies for private care homes where the regional government pays the full fee, €5,000 pcm or whatever, and detracts a percentage of the monthly pension of the care home resident so in fact it is partially paid by the resident however the care home fees are so high the resident ends paying a very small part of it. Not sure this is means tested or not but I think the percentage changes depending on income.

Assessments are made and approved by social workers working for the council and files are then sent to the regional government department for second approval. Social workers visit the person in need of care, and interview them, their relatives, carers and also rely on an independent medical assessment which must contain statements from GP and district nurse. There’s a waiting list for this assessment. I was told 6 months for assessment and up to 1 year to get funds but in my mum’s case the assessment was made within 5 weeks from application and first payment came through within 5 months, with July and August and a change of regional government halfway through the process so I think it could have been just 3 months in a different period of the year.

Yes, my understanding from my team member is that it's different once you have a terminal diagnosis.

so everyone should lose their home to pay for care? Absurd suggestion

But then the Drapers will have paid exponentially more tax than ‘Doris’. If you tax people to pay for healthcare it’s difficult to turn round and say they can’t have it unless you change the way the NHS is funded.

And Doris’s scenario rewards people who have not been financially responsible, have failed to save fund their retirement and elderly care needs, although Doris herself may always have been poor.

I think it's more that taxpayers who don't own assets/ homes/ inheritances shouldn't have to pay for people who do. But it is very unfair that dementia is assessed as 'not being a health need' in terms of CHC support.

But that’s part of the problem- people wanting to protect inheritance. It means less tax paid and so less money for CHC and any other state-funded service.

I know a few people whose parents have set up ' trust funds' years ago in order to safe guard against losing the house to pay for a care home
I'm sure that many savvy people have other ways of getting around it too, especially if they know the right people ( accountants)

It’s because they’re not technically medical needs. But as I said above it’s a postcode lottery as a friend of mine’s mum has just qualified for NHS care despite being less advanced than your example. She’s in a very wealthy borough though.

It's not at all heart breaking to see your life savings spent on care -- part of the reason you build up life savings is so that you and your family can afford to make sure you have good quality care if you need it in old age.

We really do need to make this attitude shift.

so everyone should lose their home to pay for care? Absurd suggestion
No one needs two houses, so just selling one of them would do.

I'd have more sympathy for KG if she was truly on the breadline.

Forgot to say you can choose the option you prefer for the person in need of care but the social workers can recommend another one however the person/family has the last word here.

We were recommended a care home (this would be financially better for us as keeping mum at home costs in carers’ salaries €3,300 pcm and only get €650; we, her children, also cover for holiday periods, bank holidays, etc. as an example, atm I’m in Spain caring for my mum during the Easter break) but want mum at home. Our decision, so we pay for it and only get a bit of help.