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 assume it was because he needed ‘care’ rather than ‘nursing’.

My father has advanced Parkinson’s disease. He can’t do anything for himself - can’t walk, can’t dress himself, can’t go to the loo without help, can’t manage his own medication. He doesn’t qualify for NHS care, because technically his care can be done by someone who isn’t a qualified nurse. So basically his entire income goes towards his care home fees, and the local authority pays the rest because he doesn’t have the means to pay the full fees.

The NHS care provision isn’t income-related - it’s dependent on the kind of condition you have and whether you need nursing or not. If Draper hadn’t been wealthy, his care would have been funded by the local authority, not the NHS.

Yes this is what we have been trying to say

there is 2 different systems
I for one had a diff opinion on care needs people were saying they were shocked at his level of care needs but I wasn’t shocked at all that he wasn’t entitled.

Yes I’m not sure why it’s so expensive it was in the scrutiny committee meeting minutes. Apparently costs have gone up massively recently

To be honest, whether someone gets it depends very much on the skill and dedication of the person writing the application. I have done a few as a HCP, first ones got turned down, I got further advice on how to complete and they got accepted, for the same child with the same needs. A couple of words can make all the difference in getting it or not getting it. They have to qualify as high need in 3 or more health areas. Examples would be having a trache or ventilator AND multiple pressure sores AND a severe seizure disorder requiring daily alteration in medication to manage.

Nursing isn’t necessary. My son is perfectly healthy and able bodied. He needs/has no nursing care at all. His care package is fully funded by NHS CHC . He qualifies as he scores severe in the areas of cognition and behaviour.

You can get an information pack from Beacon.

https://beaconchc.co.uk/what-is-nhs-continuing-healthcare/?gad_source=1&gclid=Cj0KCQjw8J6wBhDXARIsAPo7QA8F3XYoyyeIYSJM0iE-aouPmy2BDiZTIW1zHGkzocCFtoSeS0bET8UaAgYQEALw_wcB

This isn’t the children requirements at all
you require one severe OR 2 highs
and trach / vent is a severe.

edible food, pleasant environment and age appropriate activities are often a pipe dream these days. The one near me smacks and neglects dementia patients - was in the news for it. What I don’t understand is why it’s still open.

You will be in exactly the same care home, paying over £2k a week, as the residents you are helping to fund. Unless you can afford a very expensive home that only takes self funders, at nearer £5k a week. Once you run out of money they will chuck you out.

My father was in a home that only took self funders 8 years down the road and hundreds of thousands spent, when all his money finally ran out he was allowed to stay. The women from SS told the care home it would be unethical to move him he went on to live another 2 years with SS paying his fees.
It’s the ones which only take those funded by SS are the ones to worry about.

Unfortunately not. I don't know my 2024 fees, but in 2022 my 24/7 home care package for one personal assistant (including waking night care) was £3557 per week. My package is still social care funded.

It was good that the home could do that for your dad. I wonder how many residents they could have done that for. A lot has changed over the last 10 years. When MIL was paying 1500 per week,(10 years ago) the state funding per person was 500 per week. The home needed enough self funders to subsidise the total cost. The matron told me then that many state run care homes were having to become mixed funded in order to keep running.
Self funder fees have rocketed. My friend's husband, in the same home now, is paying 2,500 per week. According to my friend, the manager says the ratio is carefully balanced to the point where they sometimes have an empty room. This is London. I don't know whether it is different elsewhere.

Maybe is varies to area, although I didn't think it did.
Where I am has to be trache with vent to be severe. Trache with oxygen is a high, or CPAP overnight is a high.
And it's 3 highs.

But this wasnt my point! I was stating that my experience was that skill in how to complete the form was a big reason why some people who should qualify, don't. It's an incredibly lengthy and complex form to get right, evert statement you make on it has to be backed up by medical evidence

I don't want to disillusion you but paying for care doesn't always equate to better care. Many care homes that take private founders have equal trouble recruiting staff (who they pay equally as poorly as care homes who take state funded residents).
A care home with mainly private finders is probably run by a company who cream off the profits and don't invest.
The home may have a cinema room advertised but do they have enough staff to actually take people and monitor them safely while they are away from the main lounge?
There may be a nice menu but are there enough staff to actually support people to eat?
I'd look for a not for profits run home whenever possible regardless of private / state funding.

I know quite a lot about care/nursing homes as I used to work in them and now regularly visit them in a professional capacity. No care home is perfect and it should be the only remaining option for people and I agree that paying more doesn't guarantee it’s going to be better but the ones I’ve now where the majority of residents are funded by SS are absolutely shocking.
Most people have no idea what’s going on behind closed doors.
Complaining to the CQC is useless many years ago I and about 7 others complained about one that an agency used to regularly send us too, the next inspection everything was “excellent”. The really sad thing is that families felt unable to complain as they were worried the care/nursing home would “take it out” on their family member.

Are you sure it was NHS continuing care your grandad had, because if he was active and only struggled with self care, that wouldn’t qualify him for NHS CHC. It sounds more like this was LA funded care, which is totally different. Needs have to be high and complex and there has to be a need for nursing care - not just personal care. To give an example, my mum is 93, she has breast cancer, advanced vascular dementia, vascular induced ischaemia to her lower legs, osteoporosis. She’s profoundly deaf, has a heart condition and is a massive stroke/heart attack risk. She’s had falls requiring admission to hospital and is on a raft of different medications. She doesn’t qualify for CHC because although her needs are complex, she only needs help with personal care, which isn’t enough.

Yep. Agree. The home where my friends’ dad was resident is currently under police and CQC investigation. He was taken to hospital after being found in agony one morning, and on examination found to have several broken bones which the doctor said was due to very recent trauma. No one seems to be able to explain what happened and the home has been less than co-operative with the authorities and has closed ranks since he passed away as a result of the incident.

Another home run by the same care agency was closed down several months ago after a string of CQC inspections deemed it inadequate. None of the recommendations from previous inspections had been implemented and the subsequent report read like an accident waiting to happen.

In addition to inadequate staffing, and failure to address safety concerns resulting in repeated similar incidents, the inspectors found serious failings in the administration of medication, including not properly titrating insulin for diabetic residents, and allowing medications to run out, putting residents at risk. Some of the bathrooms were described as insanitary, emergency pull cords weren’t working , and inspectors found that although the home was advertised as (and charged higher prices for) a dementia care facility, the atmosphere, conditions and safety concerns made it totally unsuitable for dementia sufferers.

One of the CQC inspectors actually noted that during the inspection, a resident had been put in the lounge after breakfast and not checked on again until after lunch. They had gone without lunch, and the inspector had actually had to go and ask a member of staff to get them a blanket and some food. The care agency running the home has several others in their portfolio, despite major failings.

I was surprised that he didn't qualify for care - both because of the severity of his condition but also his age.

In my ignorance I thought that care was covered until you were of retirement age!

But if people want social care paid for, they have to stop whinging about inheritance tax.

I think he was also in London? I assume they had too much in the bank to qualify for in-home care. My MIL had her in-home care paid for, but had very little in the way of savings, although she did own her home.

They don’t chuck you out if the home you are in takes local authority funded residents, once you drop below £14,250 the local authority will take over the funding.

The threshold is £23,250 and has been for years and I think should be reviewed but that’s by the by!

Some care homes charge a huge amount due to the facilities and services they offer. They do not accept the set local authority rate. If your local authority has a set rate of £900 per week, for example, but you’ve chosen a posh home that costs £3500 per week AND the home doesn’t accept the LA rate, it’s problematic. The council may agree to pay the full weekly rate but it is dependent on circumstances. If you’ve lived there 5 years, are 98 years old and completely cared for in bed and have advanced dementia, moving someone would be unfair. If you’re 75 and moved there 6 months ago for physical care needs only, you may well find yourself with a dilemma.

We applied for it for my grandmother, it was deemed she wasn't poorly enough.

She died four days after the assessment.

She had 14 weeks of fees to pay - I refused and pointed out that obviously she was ill enough because she DIED.

They didn't ask for the money again.

https://www.theguardian.com/society/2024/apr/07/unpaid-carers-allowance-payment-prosecution-earnings-rules?CMP=share_btn_url

My granny is on end of life care after a severe stroke and has a heart condition, has been in a bed for 18m unable to even sit up and is doubly incontinent. She can't feed herself and can hardly speak. She doesn't know what day of the week it is. She doesn't qualify and we lost the appeal.

"£16k pm would surely pay for 2 staff providing 24 hour care in the home."

Ds's care via an agency is £30 per hour per carer and this is on the cheap side for agency care. He is still under children's continuing care and is eligible because of one health need being judged as severe.

I get 4 nights per week, 2 carers, agency, say they cost £30 per hour each- that's 10k a month. Just nights, 4 out of 7. That doesn't allow for anything in the day. Kate said in the program she isn't strong enough to push his wheelchair at all, so i assume any transfers she couldn't do either. It would be easy to spend 16k a month and that's without any private therapies.