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

^^ This. I’m a district nurse this is the most accurate description of what the problem is.

I got slammed on another thread for suggesting older people who had normal age related issues like diabetes for example, and inflated their symptoms on forms shouldn't get handouts, so that it goes to people in desperate need.

And yet I was told that my mum needed a DNR order because without it, if she were resuscitated after a major health event, she would have no quality of life and would likely end up in a nursing home on life support - and would have to pay for the privilege. This is the problem - the advice isn’t consistent and I suspect that’s because CHC is kept on the quiet unless families demonstrate that they know the law.

As far as I can see, these authorities will use any means to extract money. My mum was discharged from hospital with a temporary care package, which we were told was the ‘assessment period’ and free for the first 28 days to allow her to recover and rehabilitate. At the end of the assessment period we received a bill for £800 from the Local Authority, and were told that we had been misinformed by the hospital - threatened with the Bailiffs if we didn’t pay up. It’s astounding what they’re allowed to do, and how little recourse people have.

But it’s not the case that it’s only the elderly who have to self fund if they are able - younger people with health conditions still have to self fund the care they need if they have the means. It’s not ideal but the same social care rules apply.

Because it doesn’t go on diagnose or personal care needs - it goes on medical needs

as I said above if you met my daughter you would never even notice she was disabled she is completely abled

my friend son is severely disabled

however he does not need nursing level care where as she does as her medical cares are daily IVs

so she gets CHC and he gets social care …

But this was not old age where nearly everyone has to self fund .this was an illness. Should people self fund if they have MND or MS ? If not why not ?

I work in social care and have attended a lot of CHC assessments on behalf of my workplace. In a lot of cases you don't actually need a nurse to look after a sick patient. There are actually very few instances where only a qualified nurse will do. DD had the necessary equipment and a private carer (who came across brilliantly on the very moving programme). CHC is only awarded when a RGN needs to be involved in daily medical aid.

Totally agree .

Actually the whole point of continuing care is that it is not means tested. It is absolutely extremely difficult to get even for people severely handicapped , in pain because of Parkinson’s . So people are ill, need care because they have an illness but the nhs abandons them .

It is an iniquitous system. I got it for my late OH on appeal after he died, having been turned down twice.
The NHS cannot afford it so gets round it either by making sure people don't know it exists, or by making the rules so opaque and tortuous that people turn to lawyers for help ... and they are making loads of dosh put of it.
It's a mess ... and stressful at what is usually a distressing time.

Yes England. People have to contribute towards their care package if they have any level of social care funding. So even if the funding is spilt 90% CHC 10% social care they have to contribute. Before we had CHC funding my son had to pay towards his respite care. Now he pays nothing. We are currently going through re assessment though so it can all change any time.

@Alwaystired23 we get direct payments from CHC and social what was beneficial for us was how much per hour we received social only paid I think 15.00 an hour to myself which then I could pay minimum wage to hire someone.
but because our package was combined and CHC here is 21.00 an hour to myself so I can pay 18 an hour to a carer social had to meet the same hourly rate.

its just over 4 k a month we get in personal budget a month.

Meanwhile successive Conservative governments have been sitting on the Dilnot Report which was published in 2011. Its recommendations for reform of the social care system have been completely disregarded.
I know Andrew Dilnot feels very frustrated about it, not least since so much time and effort went into it.

Do I recall Johnson promising that he was going to sort out social care? Not that I believed that or any of his other fantasies.
It's just not a sexy, vote winning topic and, while we remain in thrall to the US model of taxation, nothing will change. Their services are certainly a reflection of low taxation and we* seem only too keen to follow.

*Not me!

Just wondering about this. Before DM got CHC we had looked at residential care and there were homes willing to care for her, incredibly expensive obviously but they assured us they would be able to meet her needs, at that point she had a Parkinson’s dementia diagnosis.

She was then diagnosed with a terminal brain tumour and received fast track CHC. Symptoms remained the same but the homes who had previously said they could look after her said they couldn’t meet her needs, they weren’t prepared to discuss or assess, it was just a straight no. I did wonder whether the CHC funding made her less attractive (for want of a better word).

Are you in England? It's different in Wales, where I am. Patients don't get direct payments and lose other benefits from social services once CHC is agreed.

Scotland has free personal care

the main benefit to my son is that with 100% CHC funding he doesn’t have to contribute towards his care so keeps all of his UC and his PIP. If his care was joint funded or solely funded by social care he’d be left with around £30 per week. That wouldn’t even pay for his swimming let alone toiletries, clothes etc.

Ask for a reassessment. Every CHC assessment I have ever done to date has been accepted, and not all were on ventilators or paralysed.

I have done CHC assessments, and I do reassessment. What some people don't realise (in wales) sometimes people are worse off having CHC funded care. I think we should do more shared care between the health board and social services to get much better packages of care for people.

Not surprising at all. My dad is bedridden, doubly incontinent and unable to care for himself in any way. He failed to qualify because he can breathe unassisted and can hold a spoon to feed himself. I was told that he’d have to be on a ventilator and completely paralysed to qualify!

I agree it is expensive. My son’s care package is £6,800 per week. He has a lot of 2:1 support so when you break it down the bulk of the fee is staffing.

I'm so sorry for Kate's loss & her particular situation, but equally she has property worth millions & I feel should self fund. It's ridiculous to always expect the State to pick up the tab.

No it means his care package is funded 100% by CHC. A lot of his peers have joint funding so social care pay some and CHC pay some. My son has had different care packages over the years. He had 28 hours of home care at one point and a credit card with £150 a week on it for activities, then he was at a residential college and now he lives in a residential placement. For him the main benefit is he doesn’t have to pay a contribution towards his care. If was social care funded or even joint funded he’d have to pay nearly all of his benefits towards his care package.

This is an important point. Social care on a ‘for profit’ basis = elderly and vulnerable people being fleeced for out of control fees.

Where I am we have brought a lot of social care ‘in house’ so people are employed by the LA and it’s run by the LA. It is not much cheaper, to be honest. There are many people out there living with complex needs. They deserve better. Personally, I think social care needs a huge injection of time and attention and money. It won’t happen, not with this government in power.