A Very British Consultation...

Response to the DHSC's ME/CFS Delivery Plan

What’s the Plan Batman?

Would you possibly mind not lying there for quite so long? Or course we believe your symptoms are real, but you can’t genuinely expect anything to be done? That would be far too expensive & inconvenient. We’d have to tell someone in charge off? That really wouldn’t do you know.

Sometimes engaging with the Institutional powers in the UK feels like a good sit down with a gentleman in a high-backed chair in a smoky private club in Mayfair.

So, what’s the plan, is there a plan Batman? A plan worthy of a superhero effort that will instigate real effective change? The DHSC (Department of Health & Social Care) Interim Delivery Plan on ME/CFS was published on 9th August 2023 with an 8-week consultation period. There was also an easy read format that opened on September 4th. We can see from the latest update from the DHSC on 9th November that there was an overwhelming response from the community with over 3500 responses. A huge effort for those who are energy impaired. The purpose of the plan will be used to develop the Final ME/CFS Delivery Plan for England (Final is rather a big word here). Poll at the bottom of the page for you to have your say.

Soft Power

Whilst the intention & effort to focus on ME/CFS is welcome from the Government and any change & interaction with those who truly understand the condition is a step forward. We also have to ask ourselves will it be effective; will it be enough to genuinely filter down & improve the lives of those with ME/CFS?

Long Covid Advocacy responded to the consultation. Up to half of people with Long Covid meet ME/CFS criteria so it’s crucial there is interaction from the Long Covid community & organisations.

Yet one of our main concerns is that the consultation & plan essentially rely on soft power. What is meant by this? So, reading through the consultation one can see that the language used; ‘consider’, ‘may’, ‘likely’, ‘awareness raising’, ‘signposting’ indicates that it’s relying on a model of suggestion & choice. In essence it’s very - “Dear Jeremy, would you possibly consider passing that tourniquet for my spurting aorta, if you have a moment after you’ve finished your game of billiards?” Very British.

Whilst the intention is good, much of this intention is in place already, especially through the updated ME/CFS NICE Guidelines - which Drs & clinics seem to be ignoring if they so wish. Without firm targets & deep institutional change the effectiveness of the Plan both practically & culturally is not going to be enough. It’s taking a teaspoon from your cup & saucer to break a brick wall when we need a pneumatic drill or a large piece of dynamite. What we need is standardised pathways based in legislation & implemented institutionally.

Slow

In some cases, a tortoise & hare approach, where one favours the speed of the tortoise is justified. Yet, not in this case. We know from our own experience & the patient community that patients needs are urgent. In essence we have a health emergency where it is the norm for medical neglect; where people need urgent medical & social care.

Slow, man the plan is slow. Now if the DHSC had PEM & ME itself it might be forgiven that they need a pacing approach to implement the changes needed. But they don’t. The Plan ‘considers how to increase knowledge of HCPs attitudes by Sept 2024’. Jesus, Mary Joseph & the wee baby donkey (thank you Cpt Hastings) this is mind numblingly slow. It’s not even looking at how to do this, it’s considering how. This is obviously going to take a lot of pipe smoking at the Diogenes Club. The NHS ME/CFS website (which is hideous & downright dangerous, yes it still has CBT on it) will be updated by March 2024. Honestly -we’d be happy to edit it tomorrow or at least delete the CBT & ‘tiredness’ references immediately FFS.

Even the response states:

We will now take some time to consider in detail all of the individual and organisational responses submitted. We will publish a summary of what we have heard in due course.

How much time is ‘some time’? What does ‘due course’ imply? These statements translated through British unspoken rules means ALOT of time. Surely a timeline or even a deadline could be given here. It’s hardly Batman speed - which is what we need - possibly even Batman on speed.

No Systemic Institutional Change

So, we can see that there isn’t recognition of the deeper systemic issues that need to be addressed. This involves at least medical education, funding & care pathways. We have been under a Conservative Government for 14yrs that has essentially asset stripped the country leaving a crisis in the NHS, Schools, SEN, & Benefits due to chronic underfunding, austerity, overwork, lack of support & lack of priority on decent & fair working conditions.

What we need to even begin to stand on a par with other serious illnesses is a herculean effort not tea & cake with Aunty Maude on a relaxing Sunday afternoon.

So, if Batman was in charge with his trusted sidekick Robin in tow what changes would ideally be instigating?

• Mandatory care protocols for emergency admission & hospital care based on firm Health & Safety principles.

• Systemic benefit changes to PIP & Social care to a supportive, non-discriminatory process that doesn’t traumatise patients.

• Safe & effective enforceable care pathways integrated into Primary, Secondary & Social Care.

• Specialist Nursing Provision ie like Parkinson’s Nurses.

• Indepth biomedical education in infection associated chronic diseases in medical textbooks & syllabus.

• Emergency Ring-fenced Biomedical Funding with a long term stategy.

• Infrastructure & funding to enable & attract researchers.

• A new medical vocabulary based on biological & medical pathophysiology.

• A National Centre of Excellence.

• A National Public Health Campaign.

But how could we expect all of this, surely it’s far too much to ask, there isn’t the money, the magic money tree does not work like this. This is all true & likely the underlying cause of why not much will happen any time this side of the Anthropocene. But why the fuck not? (excuse my language). With any other serious illness, let’s take for example Parkinson’s or Diabetes, it would be seen as a national scandal & deeply uncivilised to not provide Dr’s a medical education on these illnesses, not to provide nursing care, not to have a medical specialism that cares for them and not to have biomedical research structures. It’s at this point we need to become very unbritish & start possibly getting a bit upset. Yet this has become part of the problem if we are hurt, traumatised, abandoned & treated in ways most people wouldn’t think is humane -if we get upset, lose that stiff upper lip, stop doffing the cap to the big man we become the problem - and that becomes the excuse not to deal with the problem. The violence of reasonableness which the British have had centuries of colonial practice to get right.

No Clear Legislative Change

It is clear that we need a radical paradigm shift in the care for people with ME & Long Covid. One of Long Covid Advocacy’s main missions is - Legislate - it is often one of the only ways to ensure an equal, safe & non-discriminatory culture & framework. We aren’t just talking opinion or belief here or providing the odd leaflet that a medical practitioner might look at. “Please Mr Curlington-Smythe could your company only stop pouring sewage into the river if you have the time & it’s not inconvenient?” We are talking about Health & Safety & the fundamental human right to safe medical care.

So, there are several legislative acts that the Government could pass or that the Delivery Plan could strongly recommend:

• Health & Safety regulations

• Legal action for the consequences of harm, mistreatment & medical negligence

• ME/CFS & Long Covid automatically qualify for disability in the Equality Act for protection (like HIV, MS & Cancer)

• Ventilation/Clean Air bill for public spaces for the prevention of viral transmission

• Long Covid be classified as an Occupational Disease

• Automatic EHCPs for children & young people

Long Covid

The other gaping black hole in the Delivery Plan is how the DHSC are going to cope with the huge influx (that isn’t fading) of new ME/CFS cases induced by Covid. Up to 50% of people with Long Covid meet ME/CFS criteria. There are c.2 million (although no one quite knows due to the Government decision to stop counting and pretend it isn’t happening) which means the possibility of an extra 1 million people. Seeing that the previous prevalence of ME/CFS in the UK was gauged at 250 000 (although again noones quite sure as there is no registry) that’s a 300% increase. That’s likely worth a mention if we’re not being too polite. How are these people not going to fall through the net?

We also need a plan for prevention & preparedness. Many cases of Long Covid are caused by the lack of protections to prevent the spread of Covid, which is airborne. Yet it’s not just Covid, how many cases of ME/CFS are triggered by viruses caught in schools or public places? Up to 80% of ME/CFS is triggered by symptomatic viral infection. A good plan, worthy of International Rescue, Virgil, is a nationwide plan to install an enforceable program of CO2 monitoring, ventilation & air filtration. This is even a buy one get one free cost effective bonanza as it ticks the box of pandemic preparedness if another viral contagion hits. In this climate emergency we are only going to see more animal to human viral jumps as the species barrier is more & more encroached.

Accountability

What seems like a simple logical process but is actually what seems one of humanities hardest tasks is asking - how do we know how to fix something if we don’t know what went wrong in the first place - or an acknowledgement of that error. What would help (if it’s not too much bother) is a unilateral statement made by the relevant Institutions ie. MRC, NIHR & Government to what went wrong for people with ME/CFS. And while we’re at it the Royal College of Psychiatrists can do 100 million lines that ‘ME/CFS is a biological disease & we have no business in trying to treat it.’

We need a clear educational public health messaging campaign that this illness was seen as having psychological & social factors and this was wrong and a clear statement on how the illness should now be perceived – biological, devastating, needing urgent specialist care - and an apology.

To know what went wrong essentially an Inquiry is needed which again could be part of the plan Batman.

The last consideration is what guarantees do we have that the right people will be instituting the changes – ie changing the NHS websites?

Everyday Life

Many of the things that are needed and seen as automatic and civilised for other illnesses still aren’t being given – appropriate levels of funding, specialist nursing care, social care, education, treatment. It is the on the ground, everyday reality that really matters for people with ME/CFS. The essential question is is this plan going to trickle down to people with ME/CFS to make their lives better? This unfortunately is likely wishful thinking. The ‘suggestions’ are not proportionate to the reality on the ground. What we need is a general emergency/crisis status called with genuine rapid change. It is a Consultation Lite - and Batman is unlikely to be proud.

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