United Kingdom: News from #There for ME

[Robert 1973]

New substack article:

Why is Continuing Healthcare funding so hard to access for people with very severe ME?
Reflections from a year-long battle with the NHS

Really upsetting to read.

There is one bit I don’t understand. Karen writes:

James was assessed as ineligible for social care funding due to jointly owning a flat, which we could no longer live in due to his disability, but that we were for a long time unable to sell.

Later she writes:

On a personal level, the fight goes on as we continue with our appeal to the next stage. I’ve recently managed to sell our flat, meaning that social care funding for James’ care may soon kick in.

I don’t understand why selling the flat would mean that social care funding could kick in. It’s it’s means-tested, would the money they got for the flat not count against getting social care funding?

This is not a criticism of Karen or what she’s written, I’m just trying to understand how it works – not least for my own benefit. The whole welfare system for people with sickness and disabilities is so difficult to navigate, and far more so for people with ME/CFS.

 

[Andy]

I don’t understand why selling the flat would mean that social care funding could kick in. It’s it’s means-tested, would the money they got for the flat not count against getting social care funding?

One possibility is that the money from the sale was used to pay off any mortgage on it, so there was no profit (or worse, a loss). I have no insight, just guessing.

 

[Nightsong]

A difficult read. CHC has a reputation of being notoriously difficult to obtain, even for what you would think are open-and-shut cases. I'm not sure I've even heard of someone obtaining it for ME/CFS before - social care, yes, but not NHS CHC.

If the flat in question counts as a second property - if they were no longer living in it - then perhaps that is counted as an asset for the purposes of means-testing. (If I recall correctly they only disregard your primary home at the time of the application?)

 

[bicentennial]

The Dept of Health (as was) used to have a pro-active customer service helpline ready to discuss access to the NHS, and its Continuing Care, etc etc etc.

This is a crucial campaign to continue care.

This case as presented was totally misrepresented by some slack authority rewriting it as if its a life-style choice, just to block it and that is an obvious political bias as loudly espoused by some politicians, not compliant with the NHS requirement for implementation and delivery of service.

Navigating the welfare state and its paperwork, where and when still byzantine, is impossible for many people, so a lot of casework is required just explaining their job to state employees

PoHwer is run by disabled people, and can be very helpful with advocacy and case work if they have the relevant contract in your area.

Every local professional one can ask about it says "Continuing Care is very hard to get". That is why there is a costly commercial operation offering help to get it. People who can afford to pay through the nose for alternatives to the NHS only do so when the NHS is pushing them that way

The Personal Budget option on Continuing Care goes to the resident who needs it to stay at home. Otherwise the budget is ear-marked for the collectivised, monetised Homes.

It seems this is the money paying for the nursing in the scary nursing Homes etc etc etc.

In view of historical resistance - in all the bulk-funded state subsidised fields - resisting all plans to let go of any purse strings to top up any person's income for anything:

- one Prime MInister, Theresa May proposed to give chronically sick and disabled people in need of it maybe £30,000 a year to choose and pay for their own services. Sounded like the continuing care personal budget about to be made accessible with some fine-tuning

The GP association was up in arms, very upset, insisted that is not cost-effective, but what is cost-effective is to leave all the bulk-funding with their consortiums to dispose of, along with the people in need of it.

Obviously their fragmentation system is not effective, its a disgrace, its not affordable and it amounts to one for the price of two, so half the people in need must go without to prop it all up

Imagine. The budget that can pay for all the integrated health and social care you may need, and pay for disabled facility adaptations, equipment, aids and accessories. So soon after the proposal, the Prime Minister so happened to lose her job - to Boris saying its all nonsense.

She had also proposed to give the budget for special needs school transport to the parents.

So now the budget is still ring-fenced for the care industry and the weird collection of special needs transport agencies (charities that get the state subsidised contracts also charge double).

There is training available in how to make the Continuing Care application, and I wish more service agents would do the training instead of saying its hopeless. I would contribute to anyone onside who wants to do the training.

Also, the clinical commissioning boards which spend all the NHS budget - and I think decide the CC applications too (now called ICB Integrated Care Boards) - these boards are obliged by NG206 to consider, within reason and in a separate process, any request from a patient and/or a professional to implement the ME/CFS Guideline

There are some pro-active GPs who have sat on the Board and are willing to support a patient representation and request

There is no way the care industry is capable of implementing NG206, so an honest ICB only has the option to do it through releasing some of the Continuing Care Budget, no matter what contracts with a care industry earmarked almost all of it

I would also sound out the local Disabled Facility Grants Officer (Home Improvement Scheme) just to discuss the whole field they know so well, the field of keeping people in their homes. If the Officer is pro-active they will discuss it directly

And likewise sound out the local Environmental Health Department's Health & Housing Practitioner. If pro-active these people have good contacts across the fields

Edit - spelling

 

[NelliePledge]

Yes CHC is extremely difficult to get for any condition I’m not at all surprised they aren’t getting anywhere with it. There was a case 20 years ago about it of a couple Malcolm and Barbara Pointon where he had Alzheimer’s diagnosed in his 50s became very severely affected and she was his full time carer at home . https://web.archive.org/web/2007092..._Campaigns/Press_Releases/m_040202pointon.htm

 

[V.R.T.]

I know someone who has an incredibly difficult time battling the CHC for care. I won't go into details but the CHC people have been extremely unpleasant and duplicitous in trying to reduce or take away this persons care, and refuse to provide anything like the amount they really need. It's horrendous.

 

[bicentennial]

There was a case 20 years ago about it of a couple Malcolm and Barbara Pointon where he had Alzheimer’s diagnosed in his 50s became very severely affected and she was his full time carer at home .

https://web.archive.org/web/2007092..._Campaigns/Press_Releases/m_040202pointon.htm

I don'tknow if the Ombudsman service has changed, but an Ombudsman did agree with this couple's obvious case, after their NHS complaint was only half resolved by:

the NHS admitting that it wanted to spend the money on a nursing home or hospital, instead of spending it on "free NHS care at home".

So the Ombudsman made the decision and the man was awarded 100% care costs at £1,000 a week, 20 years ago.
What was £52,000 yearly then would be more now.

Maybe I did leave a nought out of the average sum proposed in 2019. Maybe for a very high need it would be £300,000 not £30,000.

Needs must. Some provisions one cannot walk away from

 

[bobbler]

New substack article:

Why is Continuing Healthcare funding so hard to access for people with very severe ME?
Reflections from a year-long battle with the NHS


KAREN HARGRAVE
FEB 10, 2026

Some quotes

it is very useful to have situations where we can compare/collect the specifics because the following last para quoted is very familiar to me. As is the rest, from another situation which wasn't CH but was NHS. And fully expecting it to be grim having had too much experience of humans, I didn't expect how practisedly new level of awful it would be (with in the middle me feeling like 'maybe it's an accident' because I give too much grace).

And I think it is in picking up the 'patterns' that we prove it is systemic and taught (and I want to call this an aggression personally because it was said so unpleasantly and lots of talking as if a child on 'there are wants and then there are needs') and very deliberate somewhere and a real problem with them (not us) - including walking a line where said individuals then gaslight to someone else trying to advocate or in the same system that 'no, I'm very much on their side they are just being sensitive' gets proven to be either a massive fib or delusion from their end.

Most difficult to read in our most recent rejection was a persistent framing of James’ needs as preferences: that he prefers not to verbalise and that he does not like having people in his room with him. Would they say someone with a severe nut allergy does not like peanut butter? That an asthmatic prefers not to breathe?

Not all of it can be accident or incompetence or someone in the whole chain not really sniffing that what they are doing is bordering on dishonesty if these things are being repeated ad verbatim or very similar, and when you are witnessing it that becomes clear as more of it goes on - but that collection of how often and exactly what happens is important in moving it past the 'maybe they didn't mean it' excuse those unfortunate enough to have to deal with this get even from allies.

I assume [if] this happened at various points with other serious illnesses and maybe they've stomped down on it (and it has either worked or not in different ways) as they should because there are eg HCPs and advocates who are seeing those habits/patterns issues if they crop up consistently due to having that healthcare structure that isn't 'only problematically trained in ideology' that is specific to that condition, because it doesn't seem to me like the sort of think that would be okayed culture-wise for all ill people. But who knows? Might be worth an ask?

 

[bobbler]

A difficult read. CHC has a reputation of being notoriously difficult to obtain, even for what you would think are open-and-shut cases. I'm not sure I've even heard of someone obtaining it for ME/CFS before - social care, yes, but not NHS CHC.

It's LC rather than ME/CFS but I remember the Kate Garraway programme that was about her husband and their situation talking about this I think (if I'm not mixing different things up - it was about medical care at home?)

 

[MrMagoo]

It's LC rather than ME/CFS but I remember the Kate Garraway programme that was about her husband and their situation talking about this I think (if I'm not mixing different things up - it was about medical care at home?)

I think Kate got into debt paying for care, but was highlighting that many people wouldn’t have even the option of taking on that much debt. Which was a fair point for her to make.

 

[bicentennial]

The NHS is the British system for health insurance. Denial of service is the problem of a broken system. Do we have a thread on this progressive provision being held back at will?

The entitlement to NHS Continuing Care is not just for medical care, but it is for problems primarily due to the medical condition(s). I don't say health condition, because I am not sure of the health status when its due to injury, development, malformation, genetics etc

There was a grey area where a local social-service provision overlapped with this national health provison. It was said that some commissioners divvied up the care package between these 2 providers. Recently I saw it said continuing care is not to be divvied up like that.

The NHS pays for nursing Homes .The SS pays for care Homes. It seems most people relying on social services for disability provision have crippled, crippling health. The distinction is unclear to me. The medical parameters to qualify for CC, are particular, specified and include for:

- precarious, unpredictable and fluctuating conditions needing flexible service.

We might frutifully explore these parameters, in detail in a dedicated Continuing Care thread