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

Kate wasn't talking about the tax payer funding his care, she was asking how most ordinary people are able to function within this system. My son receives CHC, we are in an exteremely different situation to them financially, there IS NO CARE. I am lucky to be able to work a handful of hours per week from home in a flexible role. It would be impossible for me to hold down a job outside of the home in addition to caring. Even when i have a couple of hours care, i often spend it chasing one NHS department or another. Its people like me Kate was asking how do we manage, and the answer is, largely, that we really don't manage all that well. We exist.

For MEDICAL needs not personal care/social needs.

Sweden has much better care in general because they pay miuch higher taxes than we do.

Unfortunately, the vast majority of people in the UK who could pay more tax do not wish to do so. They want the NHS, education and care (including elderly care) paid for by the state but don't seem to realise it would require very large tax increases to pay for it.

DM was double incontinent, couldn't talk, walk hardly ate down to less than 5 stone.
Her assessor argued every point. Told she will get better.
Died 10 days later.

Mill heart failure, kidney failure, liver failure, double incontinent couldn't walk.
Different assessor again argued that mil could get well.
Died 2 weeks later.

Our local hospital was acting in mums’ best interests by enacting a DNR - she has advanced vascular dementia and the consultant told me, as her LPA, that if she had a stroke or heart attack at this point, her quality of life would be nil. We weren’t asked, we were told that this was what was happening, and I was given the ‘purple slip’ containing the decision to give to GP or paramedics if she was ever in the position where resuscitation was needed. All well and good but when mum was admitted to hospital last year after a fall, a copy of her discharge notes were passed to the care company responsible for her temporary care on leaving hospital. On reading our copy of the notes, they stated ‘for full resuscitation’, which meant that had the situation arisen while carers where in attendance, they would have resuscitated her. It’s sorted now, but it’s scary to think that if I hadn’t spotted it, they would have gone against the DNR and mums’ own advance directive.

Yes you are right, the terminal disease was when the fast track CHC kicked in. Problem then was that there was nowhere for her to go. Assessed as not suitable for care at home package and then refused by numerous care homes as unable to meet needs because she still had some mobility and her behaviour was challenging. She died after two months in a completely unsuitable hospital environment. As a family we’re still traumatised by it. I complained and got an apology 🤷🏻‍♀️

My point though is that when she had a Parkinson’s dementia diagnosis she met the criteria on that CHC checklist. The person who came to do the assessment seemed determined to argue every point and “down mark” It was the most undignified horrible process. My mum was a teacher she worked hard all her life, she was treated appallingly by this country at the only time she needed help.

Totally this. If we have the money, we shouldn't be expecting taxpayers to cover our bills.

Two elderly relatives and 3 young relatives who need support.

We're contributing about £3,200 per month (in total) to their care costs in addition to what we do ourselves (skin integrity, night-time turning etc.). I can only see this increasing not only as their needs increase but as other members of the family have to decrease their contributions.

I doubt we'll be able to retire until such time as our own health forces the issue. I don't even know if we'll be able to remortgage the house to cover our outgoings because we're just about breaking even by having given up almost everything except work and care duties.

I'm pleased KG is drawing attention to this. Reading this thread, there's pockets of people who don't realise what is involved in employing carers and the fact that you can often need 2 at a time for handling. A PP was shocked at KG's £16K bill and suggested it must be cheaper than that to employ 2 carers who would cover 24/7 in a month. You'd need a team for that sort of coverage and to cover for days off and holidays. And that's before considering visits from physios to extend or maintain mobility or specialist massage therapists to deal with lymphoedema.

Social care has been dire for decades because there's no desire to have conversations about what we're willing to pay for as a society. It will continue to be dire and I don't see an end in view for this.

Lots of people mentioning a that DD and KG owned a second home. Is this true? And if verified how has she justified not selling it / using it to pay the care charges and the debts she now has from those charges?

@LizzieSiddal I meant they would not meet the criteria

It sounds like they may meet the criteria for social services support. Do they have savings?
My MIL was horrified that they had to self-fund FILs care. They have a huge amount of savings plus pensions, but also a huge amount of self-entitlement!

We had something similar. Grandad went into respite for 10 days whilst his house was modified to move the back door and build him a downstairs bathroom as he only that the kitchen sink for everything (old housing association house. Toilet downstairs but no sink on there as it was a tiny cupboard changed into indoor toilet) and it was judged by the social worker and ot that it wasn't hygienic enough for them once they got involved.

The social worker told us it was free and nothing had to be paid. Due to a whole circumstance (caused by grandad as an alcoholic) his stuff was horrific (think what they do and how they look after themselves...) and so we used his pension for those 2 weeks to purchase new bed, new chair and settee so others actually had somewhere to sit and didn't have to stand when at the house, a tv he could see and hear from across the room rather than a tiny 22 inch back on 2010, toiletries, clothes he could actually get on rather than sleeping and wearing in the same things constantly for up to 2 weeks and then never washing them, a washer, a fridge and chest freezer (rather than an old fridge with just a freezer compartment that froze solid) so he could have meals that could be warmed through by us and carers and have a stock rather than shop day to day and use that as an excuse to visit pubs, we fully stocked them and the cupboards, cleaning stuff, toiletries, new cups and plates and cutlery he could use and things could be used by the carers and us to make things easier whilst caring for him, a new microwave, bins rather than dropping stuff on the floor and leaving it and so on and so forth.

Whilst he was in we worked solidly 12 to 15 hour days for the entire 10 days to make that house nice and clean and hygienic and set up for him to return to. We budgeted well for what was needed and thought we had done really well with what we had and the limited money we had done it with thanks to charity shops and organisations and businesses taking pity in us and giving us a discount due to circumstances etc.

2 weeks after he got him we got a 2k invoice that we had 28 days to pay for or else. (far more than his more than his just over 300 quid pension at the time for those 2 weeks) Didn't matter we had copious notes of what she'd said and assured us as we had already learnt she couldn't be fully trusted through other occasions. If we didn't pay it then they threatened they'd take us to court. No discounts no arguments it just had to be done. With a lot of twisting and helping from family we got it done but I was utterly furious. She knowingly lied to us for no reason at all than just to make things harder. Through a few things she did to us and other families in the area it became clear that she was not working as she should and finally she was sacked but she shook our faith in "care/help" agencies for good.

I guess most people would have to give up work and do it themselves and/or it would get to a point where things were so bad that the person had to go into hospital or a home. Having the money to pay gives you more choices

How do you know he can sell his second home and pay for his care?
All the people I know who rent out houses have huge, interest only mortgages which they have kept borrowing against as the years go on. There is very little equity in them.

Some of the replies on this are heartbreaking.
Relative of mine wanted to see out their days at home.
Doubly incontinent, totally immobile, hoist transfer, feeding care, the lot. Doc came out, didn't expect this to go on for long but all this time paying for own care until the need for syringe driver when CHC kicked in.

No she just got behind with the payments for home care and owes the council. Payment plan set up but leaving her very short. No deferred payment plan.

Agree the whole system is absolutely fucked and things need to change. However there’s I’ve noticed a sense of entitlement from many people who are able to afford smallish items, but expect the state to provide them.
My FIL has Parkinson’s is in his 80s and needs a few adaptations on his home. MIL is spending time trying to get help from the council but they have a great pension and a home worth a huge amount of money. We’ve tried to encourage them to get these things done privately and they look at us as if we are mad!

Read this to see what the scoring system comes up re eligablity for CHC funding

We tried for my mum but the social worker evaluation went from residential to nursing then back to residential depending on what day of the week they did the assessment and my mum's condition.

https://www.gov.uk/government/publications/nhs-continuing-healthcare-checklist/nhs-continuing-healthcare-checklist-guidance

DNR can only only be given by the individual or people with LPA. However doctors can act "in the best interests" of the individual in certain circumstances.

Whilst I have said my mum got chc when she went on EOL the package of 4x calls per day nowhere near covered her needs - for example her oxygen could fall off, her catheter go wrong etc so I moved in - I asked for a respite few hours to attend my own hospital appointment and no way was that ever going to be agreed. To be at home was her wish and at my agreement but the stuff you have to do is not explained or supported adequately.
But the option of leaving her to stay in on the winter ward was equally dire as she still wouldn’t have had necessary care - they had no time to help her eat/drink and my daughter fortunately caught them asking if she wanted a pad check and if she’d been turned - my mum just said to leave her so they did - my daughter suggested they can’t expect her to know what she needs and to check their notes re times to turn but they just brought another nurse who said if she said she was ok then that was that! I did manage to get this sorted but only by one of us being there 24/7 - sleeping on a non recliner chair.
when she was sent home after many errors setting up oxygen and meds we found her cannula was left in and her catheter bag was full - fun on YouTube learning how to empty that!
There is no resource to care adequately across all ages, nor in other areas. I think we will soon have assisted dying legalised and whilst I’m not against that per se I think it will come to be used more widely and less ideally than we like to think about.
One point on lives that it’s not just NHS putting value on - potential attrition rates are assessed across all emergency services against cost - eg how many fire stations are needed. When all are underfunded then this gets more concerning.

Irrelevant

It's was a sad situation Derek Draper ended up in, but there is a certain amount of irony here with people blaming the Tories and their voters for the lack of funding within the NHS (whether true or not), but here you have someone who had a very prominent position within Labour, has a second home that if sold would cover all of his medical costs, but believes that the tax payer should pay for his care instead of having to sell the second property.

That just sums up politics and how no political party is going to solve this problem.

We had a very similar experience. We only found out about continuing healthcare because the social worker flagged up in the meeting that she thought we would be eligible. The NHS staff in the room were not at all happy that she had mentioned this and one openly said that that would be a burden on NHS budgets. There was some sort of discussion immediately afterwards between the NHS staff and the social worker (all took place behind closed doors so not entirely sure what happened). Shortly afterwards the social worker was transferred off and replaced by one that lied to me about the criteria. May be a total coincidence, but it didn't feel that way at the time. Really stressful experience.

I work with very complex disabled children, who often need oxygen at night, are tube fed, have seizures etc and almost none of them get approved for CHC funding. It’s pretty awful.

Was he actually turned down though? I thought it was more that the claim was taking a long time to be processed and has yet to be determined, obviously not right when needs are so immediate and critical.

In my sons case, we manage by me hardly working and being available for him 24/7. He does qualify for CHC, but that doesn't mean round the clock care either, we get some nights and a handful of daytime hours.

Watching the documentary i could see how Derek didn't qualify, he could communicate his basic wants and needs, wasn't dependent on Oxygen, and could even assist with feeding himself. Not that I'm saying he shouldn't qualify, just that i can see why he didn't.

I hope this documentary gives the whole public a big wake up call in terms of the services available tbh.