United Kingdom: News from #There for ME

[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

 

[Chandelier]

#ThereForME Update 30: Six months since the publication of the Final Delivery Plan for ME

January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME.

www.thereforme.uk

Campaign update #30: Six months since the publication of the Final Delivery Plan for ME​

January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME. What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.

 

[JellyBabyKid]

#ThereForME Update 30: Six months since the publication of the Final Delivery Plan for ME

January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME.

www.thereforme.uk

Campaign update #30: Six months since the publication of the Final Delivery Plan for ME​

January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME. What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.

Again, it comes back to how do we increase pressure/shame the government, as this is an abdication of responsibility.

 

[bobbler]

Again, it comes back to how do we increase pressure/shame the government, as this is an abdication of responsibility.

It’s tricky when the plan itself is crap. We’ve had a new level of game being played where what 9 yrs in to the research changing showing that the old regime that embedded malign and caused harm needed to change, and everyone sick of our whinging (not noticing nothing has been done but a lot of fans playing has happened) we say ‘the plans not even been implemented, but it’s a joke anyway so please sir can we have a real one’

i think it’s very insightful that nothing near the word sorry has ever occurred even fir those who were hardest hit - in fact those most harmed, who I’d say getting it young in just the wrong generation of diagnosis so caught right in the aims of the bps guinea pig guidelines, are now still the ones left most vulnerable and targeted even if this got implemented. More severe than they might have been so ‘injured’ and in a world allowing still the usual slights and suggestions if fnd or ‘it doesn’t get that bad maybe it’s something else but never let’s look properly at them medically instead that inferring not nice ideas’

There’s no shame because the propaganda has been trying to infer those most ill are to be suspected or carry that shame themselves with a very psssive aggressive ‘we just want to help’ cover up words that gives shivers to those who had that hell of a non-existence due to such ‘help’

And because they are allowed still to use the term/lie ‘good intentions’ as if that makes being left more disabled both not the doers problem but shame for the injured. It should be called out as callous indifference now to anyone who says that but closes someone down when they mention actual consequences and outcomes. And intends to do the same whilst refusing to hear it harm 2000 times before.

The people who had these ideas , imposed them and still do get more sympathy about having to put up with me being ‘like this’ than I’ve ever had one word of.

Everyone is being trained by rhetoric for the past 5yrs to shift the responsibility

 

[NelliePledge]

Good summary by ThereforME I will be sharing this with my MP.

 

[Nightsong]

Guest post by Tessa Munt MP:

The case for change for people with ME — and how to get involved

 

[bicentennial]

On care, a suggested draft service specification for mild and moderate ME (which Integrated Care Boards will be encouraged to use) has only just been shared for consultation.

A government changed its line. It was saying: "It is nothing to do with us so see your local commissioner (Integrated Care Board)". Is this consultative draft now visible? Or is this a "consultation" going the rounds again, in inner circles so its not a consultation?

I will keep pushing – currently I’m arranging a face-to-face meeting with Sharon Hodgson, the incoming minister with responsibility for ME. A new Minister may bring new opportunities.

Do we have our own Minister now? Or is this some under-mInister for something - with us just an item listed in the portfolio

Many campaigns against injustice have only seen change after decades, succeeding simply by continuing until the external context has changed in their favour ... support comes from across parties and includes at least 30 Labour MPs. There are also numerous colleagues in the House of Lords who are keen to help. ... I need many more colleagues across the house fired up and ready to play their part too. ... We know that the government will change course under pressure .

Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side. ... many MPs fear losing their seats ... talk numbers ... The sheer magnitude of people affected may well be a wake-up call, not to mention the wider impact on the economy and the health service. We have the numbers, the stories and the potential support in parliament to make the difference.

As There For Me noted from previous experience : these things do take a long time but then get suddenly resolved.

 

[Jonathan Edwards]

A government changed its line. It was saying: "It is nothing to do with us so see your local commissioner (Integrated Care Board)". Is this consultative draft now visible? Or is this a "consultation" going the rounds again, in inner circles so its not a consultation?

I have asked for presentation slides to be made available here. I have had a helpful response but not an official approval yet.

 

[rvallee]

Invisible to Policy, Visible in Children’s Lives (Long Covid Kids)

Over 1,000 messages sent to UK politicians. Our campaign “Invisible to Policy, Visible in Children’s Lives” is gathering momentum.

Over 1,000 people across the UK have now written to their elected representatives, calling for greater recognition of Long Covid in children and young people. Families, clinicians, educators and supporters are coming together to make sure that children affected by Long Covid are not overlooked in policy, services and data.

The campaign asks policymakers across Westminster, Holyrood, the Senedd and Stormont to recognise the impact of Long Covid on children's health, education and future opportunities.

 

[Binkie4]

A few days ago, Emma Gore- Lloyd posted this. I have not seen much from " There for ME" recently so I was glad to get connected again.

It is a year since the Final Delivery Plan was published, and a forthcoming blog will be devoted to this and TforME's second anniversary. In the meantime Emma has addressed the issue of how many people we have with ME and the different estimates that are put forward.

How many people in the UK are affected by ME?

We have a data problem

www.thereforme.uk

"Data on ME matters because numbers drive resources and political attention. If the number under-represents the scale of the issue, the response will be insufficient, affecting research funding, NHS service provision, social care planning, and benefits policy."

 

[Hutan]

From the blog on 'How many people in the UK are affected by ME?'

The 404k figure (0.6% of the UK population) comes from a 2025 study by Professor Chris Ponting and Gemma Samms at the University of Edinburgh on access to ME diagnosis.

They looked at hospital and outpatient records of 62 million patients from 1989–2023 in England and found that 0.16% had the International Classification of Diseases G93.3code for post-viral fatigue (this is the relevant code for myalgic encephalomyelitis). In reviewing the data, they found that access to diagnosis was patchy across England: Professor Ponting is quoted in a Guardian article as saying

“The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. There are nearly 200 GP practices – mostly in deprived areas of the country – that have no recorded ME/CFS patients at all.”
The study also found that Chinese, Asian and Black ethnic groups in the UK were significantly less likely to receive a diagnosis of ME than white groups. Taking uneven diagnosis into account, they modelled prevalence based on the best access to diagnosis, estimating a prevalence in the UK of 0.6%, or roughly 404,000. This is an update on the figure of 250,000 that had been used for many years previously.

Charities and campaigners – including Action for ME, the ME Association, Forward ME, and #ThereForME (and Tessa Munt MP) – have instead chosen to use a higher 1.35 million figure. This aims to capture the significant number of people who developed symptoms meeting the diagnostic criteria for ME following Covid-19 infection. It is calculated from the above 404k plus the 50% of the 1.9m people in the UK with Long Covid who reported ME-like symptoms (based on 2023 ONS estimates, the most recent Long Covid estimate that exists for the UK as a whole).

While this figure may be less robust, we at #ThereForME have made the judgement that, by taking Long Covid into account, it reflects a better estimate of the true scale of the issue. The difference is not small: taking ME-like Long Covid into account gives us a figure roughly three times as high as the 404k figure, and equivalent to around 1.9% of the UK population, or more than the population of Birmingham. We feel this is a better basis for policy making, rather than leaving nearly a million people uncounted.

I was asked about population estimates just a couple of days ago. It's all a bit debatable, because the data is so poor. The forum's fact sheet went for 0.4% of the population, or 1 in 250 people. There isn't good evidence to support the use of 50% of people reporting Long Covid. (The ONS estimate is simply for Long Covid, it says nothing about ME/CFS.)

I think it's better to stick with a conservative number that can be well defended, 0.4% of the population, perhaps 0.6%. And then just note that Covid infections have substantially increased that percentage, perhaps doubling it, or more, but that we don't have good data. The economic impact even with 0.4% is substantial, big enough to convince people that something should be done, if they are open to being convinced. Reaching for bigger numbers can erode the credibility of the claims.

If you assume that nearly 2% of the population has ME/CFS (3 x 0.6%; 3 x 404,000 is about 1.2 million, and ThereforME is using 1.35 million), then that is 1 person in 50 with ME/CFS. That seems to me to strain credibility, even if it is true. I doubt that most GPs would be reporting that 2% of their patients have ME/CFS.