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

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.

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 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

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.

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.

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.

My df was in a care home for 7 years after a stroke and dementia. He was doubly incontinent, had to be spoon fed, in a wheelchair and had to be turned at night due to pressure sores, couldn't communicate etc. He didn't get it. We appealed, and the meeting was awful. The 'independent ' moderator was from another council who just backed our council person up. She said he wasn't ill enough - even though he'd died by then!

Everything seemed to be excluded eg he couldnt walk, or mobilise, wheelchair bound and slumps over, pressure sores - 'but he's not had any falls' etc. I can't imagine who would get it, as anyone I'll enough would surely need to be in hospital or a Hospice.

I get there's not enough money around, but it's the inequality that makes me most angry. Need a district nurse to visit you = paid for, need a carer because you can't do anything yourself = stump up the money

we were lucky with GD / the hospital gave GD medication against an advanced care plan. He then was classed at terminal - and his care was paid in full. However he could pay out of his local authority pension income- there isn’t many people of my generation who will be able to say the same!

It's even worse when they see the care home owners driving new Porsches and don't understand why they can't give their own kids money to buy a cheap car so their visits can be made easier.

It honestly must be heartbreaking for older people to see their whole life savings go on care when they wanted to leave something to their kids. I work for an older people's charity and it is one of the most common queries we get from people, how they can protect inheritance, it causes people a lot of angst.

Honestly, it feels like there’s two lotteries in this life.

One that gets you a big old cheque with lots of 000s, and one that gives you a particular qualifying disease that covers the bills.

It’s a sad state of affairs when you’re praying for cancer.

I often wonder if some departments are given 'strong incentives' to kick claims into the long grass and deliberately only just 'come to' the case - and agree that the patient does indeed qualify for considerable funding - once they know they have died.

Not besmirching any individual hard-working HCP at all, but how else can you explain it?

My Dad is 92, in a nursing home, catheter fitted, legs don't work due to diabetes, injected every day because of diabetes, doubly incontinent and unable to walk or even get out of bed. He also has dementia. He apparently has no "ongoing healthcare needs" so has to fund his own care. We have to visit twice a day to make sure he isn't left lying in his own shit for too long. Dad is paying nearly £4k per month for this "care".

Yup. No CHC for PEG feeding, for turning re bedsores, for continence related issues, for drug administration, for dysphasia, mobilisation, obviously not for personal care, dressing changes, stomas. It's hard to know what's left really.

Yep, my mum was another victim of a massive stroke, that left her paralysed down one side and entirely helpless but for the use of her right arm. She didn't qualify

Her care costs up to her death last week, totalled £800,000. She ran out of her own money (the proceeds from her house, her pension income, and all of her and my late dad's savings) after £550,000.

A lot of people don't pay, it is covered by the local authority funding it. Once savings get below £23250, it become funded or at least partially funded. I'm guessing they didn't qualify because they have significant assets in addition to the house they live in which would be disregarded.

My DP was very ill and on oxygen at home in his 30’s. He had a special machine for nighttime, special bed and we had a commode etc. When we looked at getting help it looked like we would have to pay for it. It was already tight with 3 young kids and we were worried about the future. We somehow managed until he went into hospital and passed away.

I don't know anyone who has qualified for several years. Previously they used to and an appeal was often successful but now we have whole teams of people to make sure no one qualifies quite honestly and another whole team to try and find deliberate deprivation of assets.

Continuing health care is about needing Nursing care. Apart from his PEG feeding I can't see how he would qualify as he needed basic care/ physio etc, but even PEG feeding can be done by many carers with training. Sorry I don't see how he would qualify for CHC funding.

If I remember correctly from going through it with a relative is the way they get around giving funding is to discriminate between clinical nursing care & things like personal care.

So, needing help getting dressed, not being safe to be alone, having someone provide meals etc- all the basic daily caring duties don't count because they're not clinical nursing.

Of course, all of this used to be classed as nursing anyway but hasn't been for decades.

Because his needs were mostly for care, not medical treatment.

They owned 2 houses, one worth 2 million and one worth 1.7million. Of course they should pay for his care needs.

You know how the NHS is situated.

@takeitorleave That sounds horrific. I'm so sorry that happened to your family had to go through that especially your dad! I'm shocked that with all the medical documentation he must have had given his condition, but because he could eat normal food meant he didn't qualify! The decision-making here is entirely absurd.

It's becoming almost impossible to get now.

The system is so broken. Nobody should be having to pay £16k a month on their care when they can't afford it. And even with Kates salary it wouldn't stretch.
So many people currently have inadequate care. People are suffering as a result.

I've worked in care for 15 years. Things have never been this bad