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 agree 100% so if you are unfortunate enough to end up in Hospital with a serious illness, you will be happy to use your savings and/or house to pay for your treatment?

Or is it only other people who should pay care?

Draper got Covid, he then went on to get very severe complications, how on earth shouldn't that care be provided by the state?

The NHS should be available to all.

CHC is a nightmare to get, we had a meeting re DF and were told he didn't meet the criteria and they wouldn't entertain us applying. I knew he met the criteria though as he ticked so many of the boxes, he now has it thank goodness but only after a real fight. It seems the social care system is set up to ensure its as hard as possible ti get help.

No the value of the house isn't considered.

Yep.
It is only considered if you’re going into a long term residential care home or nursing home placement and only if you don’t have, for example, a spouse still living there.

Yes thats the situation that we find ourselves in BUT its all wrong, anyone in this situation will usually have a lot of other needs too, in any normal world, these would not be classed as "social"

The authorities just move the goal posts so medical care/clinical need is now classed as "social".

My Mum had CHC in 2016, she wouldn't get it now & it will only get worse.

A cousin if my dads got chc for dementia in his 60s. He went into a care home but he didn’t have to pay anything even though he owned a house outright. He had no close family so not sure if that was part of it when they assess- never married so no children or spouse and was an only child so no siblings. He had a court appointed solicitor that looked after his affairs social services must have sorted.

i will add this was over 10 years ago so perhaps he wouldn’t get now

I doesn’t make it right though. What if gets to you need an NHS operation and if you’re well off enough you’ll have to pay for it? Even though you’ve worked all your life and paid your dues?

I’m trying to give 2 diff examples

my DD still a child - can walk / talk / dress her self etc is academically able / cognitively fine - she does however have complex medical needs requiring daily IV treatment and fed via her blood stream.

my friends little boy has a brain injury - he can’t talk / walk / play etc
has lots of meds via a feeding tube and is tube fed.

my daughter qualifies via CHC
her son does not

her son gets his package via social not CHC and my daughter gets most from CHC and a smaller package via social.

Completely different. The social contract is that the NHS is free at the point of use. That’s not the case with social care - it’s accepted that if you have the means, then you pay.

Am so sorry to hear that - she should have been offered a nursing home with registration for her additional needs such as a nursing home with a specialist mental health unit attatched . The homes that cdnt take her may have been inappropriate. As they did not have the registration requirements to meet her needs . Your mum sounds similat to people who I soend much if my working life fighting for - which includes fighting the chc meetings and also panel - if they were down graded . I remember the whole of a meeting once said a patient was not for consideration at panel ( to qualify for chc ) i knew that In the small print as it were it takes one member of the team that does the meeting to think they need to be considered - I was as a sw the only one who thought he should get it - the panel agreed with my arguments - he got it . I was so relieved that the family were heard . What people can forget is it is not just about the patients lives but those around them and it can impact on generations - trauma and the like .
I am angry on your behalf and please know that there are people who understand what you have faced .

MrsGalloway the above message was for you . Sorry I thought that i had linked .

The social contract is that the NHS is free at the point of use. That’s not the case with social care - it’s accepted that if you have the means, then you pay.

That might have been the social contract back when people who need care at home didn't imply the need for family members to be trained up to monitor skin integrity, administer IVs and complex meds, maintain oxygen concentrators, care for ports and catheters etc. Never mind work at the same time and sustain family life.

We may well need to refresh our assumptions about social contracts and expectations of social care.

But the goalposts of what social care is have been changed and are applied inconsistently as per the many examples on this thread. My nan got CHC 20 years ago with a diagnosis of vascular dementia at 75. She wouldn’t get it now.

My mum met the CHC criteria on paper, she really did but was refused.

The current system forces people to try and navigate this at the most difficult and traumatic times and it’s not consistent or fair. Those who have the ability and means to challenge CHC decisions are more likely to get it. The entire system is wrong.

I'e said this on another thread about DD so apologies, but that is our situation. I gave up work a few years ago as my DHs health was deteriorating and he's been cared for in bed for the last 18 months (got Covid, left in bed on ward which took his remaining mobility)

We have 2x day 30 mins calls (double assist) and I do the rest. Financially we were in a position where I could give up work but my heart goes out to those who aren't, because at this point the only realistic option for him would be nursing home, as (like most of us) £16 000 per month or anything like would be undoable. He does have medical needs but not at CHC threshold yet. I'm afraid lawyering up can be effective in whether it is granted and it shouldn't be like that. I've also got a professional background in social care and can be fearsome sorry assertive in advocating for him. It also shouldn't be like that, because Fred down the road with no family is just as important.

I'm considerably older than KG and my own health has taken a pasting which scares me, as I know if anything happened to stop me providing a lot of care and support, day and night, the only option for him would be residential care. As the system stands, it is either pay, do it yourself or that.

We need a lot more focus on how we go forward. Making paid care work the valued and properly rewarded career it should be would be a start, also recognising there needs to be the money found to achieve that.

Yes that’s how it’s considered because what used to be nursing is now care . If you think that’s ok that’s up to you.

Exactly nursing care has just been renamed social care .

Who has "accepted" that we have to pay for this type of care? who has it just been forced upon us?

I think as i ve explained to you and along with other posters, the Social Care bit has been expanded to include complex medical care, ie wound and fractures, drugs, IV...

Its basically using min wage workers to do the job of what a few years ago would have been the job of a district nurse or in patient care.

I was totally shocked at what my DD was expected to do, though doing a healthcare related degree, her training for adult social care was a 2hr online course and 1 week shadowing an experienced carer.

I think it’s not tax that need to be higher as such but National Insurance contributions. Tax is actually more or less the same as say in France for average salaries but the French pay more NI contributions which means better social cover health/ unemploment/ retirement/ life long training.

This. Carers (mostly on minimum wage) are doing PEG feeds, catheter and stoma care and much else. Anyone who thinks it is "just" things like helping people dress and getting them breakfast is several decades out of date.

I meant generally accepted because we don’t have any choice, and the rules seemingly can’t be easily circumvented - the whole system is broken and it appears no-one has a clue how to fix it.

Yes and who knows , God Forbid, one day that painful hip thats needs operating on might be deemed ‘ an operation for comfort but not life saving’ and people will have to pay themselves if they want it.

I don’t know if this is generally the case but our local hospital uses care assistants on the wards. Qualified and student nurses are mostly congregated around computer screens at nursing stations a lot of the time, while the care assistants circulate. So it seems there is now a cross over social care element in hospitals too.

I didn’t say I think it’s OK. It’s not, and it’s very concerning. Just telling it like it is.

It is how it is. It doesn’t make it right though :) so we’ll agree to agree !

But we do have a choice and politicians DO know how to fix it, they just don't want too and i include Labour in this too.... far too timid for my liking.

So we could bring social care under the NHS bandings, would increase wages and staff would get better training... funded by closing the gap between earned and unearned income eg Sunak paid 22% on his income, more normal punters can avoid tax on long term investments altogether by using their ISA allowances.
ISA weren't originally set up for this... or maybe they were?

We could change this.