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?

I have seen a lot of speculation around this and lots of people not understanding but still stating things that are facts as not facts ( on social media )

CHC as you say is not income based there is a set criteria and there is different catergories
for example

breathing - severe - high - moderate- low
feeding - severe - high - moderate - low
seizures - severe - high - moderate - low
medications - high - moderate - low

and a few more

for CHC funding you need to have a at least one severe or 2 high to qualify for anything

feeding via a peg does not come under severe - severe is
for IV nutrition / Tpn

breathing - being on oxygen wouldn’t be severe
severe is ventilation

medications being on 10 meds a day isn’t severe category
it’s a continuous drip of medication that would be fatal is stopped.
iv meds only reach high not severe.

Just to add
there is a few that don’t have high or severe as an option so don’t qualify you
like Incontinence - behaviour - mobility but they do still have moderate - low - none and so if you qualify due to having 1 severe or 2 highs these will be taken in to account on what hours you qualify for.

my daughter for example got
1 severe
3 highs
2 moderate
1 none
she gets 40 hours a week so not around the clock care.

for him it would of landed at social care not CHC and this is where she was chasing the wrong people - but also can then be based on income.

It’s absolute shit. My Mum was (wrongly) diagnosed with Parkinson’s dementia, by that stage was incontinent, couldn’t cook, dress, wash, take tablets and could barely move by herself but didn’t qualify.

The initial assessment was with an assessor with poor English who neither we nor mum could properly understand. Process was utterly degrading and really upsetting. At one point she’d managed to stand up and shuffled up a half step from one room to another in her own bungalow and assessor said “oh I’ve just seen she can climb stairs”. She couldn’t but the assessor just shrugged and said he thought she could and ticked his box.

Three weeks later she was diagnosed with a brain tumour after a scan - so not Parkinson’s dementia after all - and she got CHC. Same needs, same symptoms.

My mil got it but i had to fight for it and we only got it because she needed oxygen support 24/7 which needed to be tweaked hourly or so, we also only got 8 hours of care, we had to cover 16 hours a day …

She was bed bound, Catheter and ileostomy bag, which she couldnt change / Empty her self , couldnt pour herself a glass of water or move herself up in the bed, but none of that qualified for it
It was purely the need for oxygen and the fact it needed adjusting often

My mother couldn't get it and had a rare neurological disease that left her unable to do even the simplest thing for herself. She was unable to move anything but her eyes come the end and still didn't qualify for it.

My nursing home manager stated I'd qualify if my funding authority was the neighbouring county. I'd have a 50/50 chance if funded by the county my nursing home was in, but no hope of success from my actual home authority.

So much for a country wide system.

I've never heard of him.

No need to comment then

Just move on

^^This.
CHC as it was, when I assessed patients for it, for those with severe medical needs and a very limited life expectancy of six weeks or less.
Derek had great care needs but not medical needs beyond that which a GP could manage.

My mother had a catastrophic stroke and was in a nursing home for 4 years. We had to sell her house to pay for her care. I had her assessed at least twice for CHC and each time they said she did not qualify. I knew the decision was wrong . I studied the law on this and put together a case based on the law and previous cases upheld by the ombudsman. My sister is a nurse and after I got my mums nursing notes from the care home we went through every single page logging the unstable nature of my mums condition and the need for specialist interventions( which were sometimes not accessed) We submitted the case to a panel where the two of us were heavily outnumbered. We won and all her care fees were reimbursed to her estate. I was determined to fight it as my mum worked all her life for the NHS and did not deserve this shoddy treatment when she was vulnerable.

I’m still so cross about our CHC meeting and subsequent appeal for my mum. Felt like being gaslighted and patronised at the same time, being told her needs weren’t complex or unpredictable enough (they were). I’d rather they just admitted that there’s not enough money to go around and therefore can’t grant it than the experience me and my brother had trying to ‘prove’ she was eligible. The current system is a joke.

It's a tax on disability. The diaabled in general are being treated with absolute contempt by the current government. We're like America now. You could lose everything you ever worked for because you're unlucky enough to get really ill.

Does anyone know what the situation is like in other European countries?

I'd imagine because his was a (temporary) illness (although heabily fueled by age/health/circumstances) in which they Opted to do home care to get him out of hospital & back to his kids/family as quick as possible Much of the cost needed to be shouldered by them regardless of wether they were poor or wealthy

Whereas your grandfather became permanently physically disabled & was probably released from hospital at the right/expected time.

As much as they/she put in as much effort as possible I do wonder long term wether he would have been better off staying in hospital/hospice care or god forbid dying sooner then the shitshow of house renovations/documentarys/trips to mexico for experimental treatments/disputes over carer funding that ultimately saw him die having never fully recovered from the initial bout unfortunately

This is not true you don’t have to be dying to get CHC but you need to have complex medical cares

it seems that a lot of people posting from experience are chasing the wrong people and social care should be blamed not the CHC.
social care also have care packages.
but the CHC is not for terminally sick patients.
the general issues is a lot this patients have day to day care needs rather than medical cares and so it’s social funds not CHC.

Not much better
the issue being for a lot of places that have free healthcare
apart from maybe Sweden
is that the systems are not capable of the amount of people now.
medical research / advances are double edged sword.
people are surviving much longer in terms of age but also many people with long term illnesses.
same as cancer rates … a lot of cancer is proven to statistically be in older people ,. We have more older people so more cancer patients to treat
there is no longer the recourses to cope
so we are so happy how much treatment there is to keep people alive longer but the effects are now going to start falling the over way because we can’t keep up

Also it should be noted that as a carer I don’t see myself in mate garraway. She chose 24 hour around the clock care that cost 16 k a month ! not a single hour that they cared for him ( sorry )
even if she did get CHC air wouldn’t have been 24 hours

alot of people have survived without being able to pay 16k a month.
many of us don’t have the choice to pay that much.
the adaptions / the extra therapies
don’t get me wrong good for her that she was able to do that but I wish she would still talking for the “1000s “ in the same boat.

The brutal truth is that Derek Draper and many other people are being kept alive in ICU at great cost but unfortunately are then deemed well enough to be moved to a different setting where there needs whilst no longer critical are very labour intensive.
20 years ago DD wouldn’t have survived covid and would probably have died within the first month.

It’s an impossible situation where we have the means to save a life which is perhaps not worth living. Obviously to the families involved they will do anything to keep their loved one alive without perhaps grasping what is the reality for that life.
Personally I would have sooner died than end up like DD.

My son has severe learning disabilities, no medical needs, and gets 100% CHC funding. There are 12 (I think) domains and to qualify you have to score “severe” in two domains. I too am surprised that he didn’t. We’ve had to appeal this year though and spent 7 hours in a room arguing about one domain.

A friend suffered a severe brain injury, he was unable to walk/move much as he couldn’t coordinate his limbs at all, he lost the ability to talk, he had to be fed as he couldn’t coordinate getting food from a plate to his mouth etc. He needed assistance with washing, dressing and toileting.

He was assessed as having no needs so awarded nothing, as a result he spent a further 14 months in hospital as he couldn’t leave without either significant home care, or a place in a care home. He was on a normal ward for his extended stay rather than remaning on a rehabilitation ward. He was awfully neglected so any progress he made was lost, including the immense work the team had done to enable him to eat, so within weeks he was nil by mouth, that still wasn’t enough. He was only able to gain appropriate care when a nurse put him in a chair unattended, he fell, hit his head and further damaged his brain which caused daily seizures.

1 severe or 2 highs

but severe is hard to get and it does depend hugely on the case worker

for the first 6 years of my daughters care package the CCG relied on our community nurses to do the paper work and then CCG when to panel
we received 10 hours a week Every year for 6 years.
then all of a sudden they had made s new team and CCG had discovered there was children in our area who were entitled to care packages but scored low on CCN assements and then there was some children who should never have been entitled with huge ones. They basically put it down to the community nurses favouring families.
so when our review come up our key worker warned me that a lot of people lost their packages and I was dreading it anyway
CCG lady turns up and was shocked at our package and re did the whole assessment and we came out at 40 hours a week even though her care needs had been the same the 6 previous assements.

@Greenfluffycardi by 100 percent do you mean 24 hour home care ?

That's a bit disingenuous, it's not simply because people are living longer though is it? There are a multitude of factors.

Chronic, and deliberate, underfunding of the NHS and all its supporting networks (18% less than the EU14 average) contributes to many of us having a shorter "healthy" life expectancy.

Combine this with growing inequality and you end up with girls born in the poorest parts of the UK having 20 fewer years of healthy life expectancy.

There's nothing inevitable about where we are, this situation is because of choice. We could choose to invest in public services, healthcare, education, housing. Things which drive the economy, reduce inequality and raise healthy life expectancy, but we don't.

It's absolutely heartbreaking reading all your stories.
My husband had a stroke which has left him paralysed on his left side and some degree of brain damage. We are very lucky we live in Scotland as our care is free at point of hospital release. We have amazing carers through the council, OK, sometimes things take time , we have a 2 year wait from OT for a ramp but seeing the documentary I'm grateful for what we do get here.

Abi Morgan is an author who wrote The Split, (tv drama). Her partner had a severe reaction to a new medication for diabetes. He was in a coma for months, in hospital for nearly two years and was left with permanent brain damage. He was awarded continuing care in the form of a daytime carer at home. The carer turned up, spoke little English, had never done a caring job before and failed to turn up after the first day. Abi had to pay privately for proper care. She was diagnosed with stage 3 breast cancer at the same time. She wrote The Split, all about divorce and leaving your husband in order to pay for her husband's care. She is a wonderful woman and author.
It is such a problem tracking down qualified, experienced carers.
In my experience LAs fund who don't own their own home and those who have the funds to sue the LA if they don't cough up. So, they fund the poor and the very rich. No one in between.
Local Authorities are facing bankruptcy. There was a Panorama on this subject a few weeks ago, focusing on Hillingdon. Their largest individual bill for continuing care for an individual was £1,000,000 per year. There is no money. No secret stashes. This kind of social care eats most of their budgets. It is such a big and ever growing problem.
Sadly, it is the squeezed middle who will shoulder the burden of care.
I don't think posters on MN realise how challenging the issues are around social care.