Tuesday 29 October is an auspicious day for the myalgic encephalomyelitis (ME/CFS) community. Crucially, it marks three years to the day the National Institute for Health and Care Excellence (NICE) implemented its updated guideline for the devastating chronic illness.
However, in that time, the NHS has continued to neglect, gaslight, and abuse people living with ME. A notable recent example of this is 23-year-old Carla Naoum – who West Middlesex University Hospital has just sectioned under the Mental Health Act. In other words, the state of healthcare services for people living with ME hasn’t improved.
It’s why long-time ME campaigner Sally Callow is announcing the launch of a vital new ‘M.E.- Friendly Hospital Charter’.
What does it call for? In Callow’s own words, “dignity and care in healthcare” – or in short – the very basics NHS hospitals should be affording patients. This is because, as it currently stands, they aren’t even giving ME patients this much.
A hospital charter for ME/CFS
On 21 October in 2021, NICE put new guidelines in place for people living with ME/CFS. In principle, these were a huge improvement on the former guidelines, since they removed treatments that had been causing harm to people living with the disease. Notably, it removed graded exercise therapy (GET), and downgraded cognitive behavioural therapy (CBT).
However, as the Canary has previously noted, this hasn’t stopped clinicians from pushing these on ME patients regardless. Significantly, hospitals are still failing to adhere to the new guidelines more broadly – and even when they are, it still hasn’t been enough. This has been the case for Carla in West Middlesex hospital for instance.
For this reason, through her social enterprises Callow has been working on two major projects to shake up the state of NHS care for people living with ME.
Campaign group ME Foggy Dog and ME training organisation the Stripy Lighbulb CIC first launched their severe ME NHS Protocol campaign in February 2024. This calls for the creation of a protocol that sets out how clinicians are to implement the NICE guidelines and
Callow penned an open letter to key government and shadow cabinet ministers across England, Scotland, and Wales. Over 5,000 people have signed it since its launch. You can add your name to this here.
Now, Callow is also announcing the launch of ‘The M.E.-Friendly Hospital Charter’ alongside this.
Five core principles – what’s missing from NHS ME/CFS hospital care
Unlike the protocol, this encompasses hospital experiences of people living with ME/CFS more broadly. However, Callow pointed out that it will benefit anyone living with ME – including severe ME patients.
To bring it together, the Stripy Lightbulb Club and ME Foggy Dog hosted a focus group with ME patients, carers, and members of the NHS, from all nations of the UK. In other words, the whole process put patients at the heart of drawing up the charter.
Notably, they held a Zoom session with a diverse demographic of people from these groups. On top of this, Callow made sure to include ME patients of different severities. Vitally, she did so in a way to maximise their safety during the process. For instance, severe ME patients that couldn’t attend the video meeting could still participate via email, and over a time period that was appropriate for them.
Essentially, the charter lays out the standards of care ME patients should encounter in hospital environments.
More specifically, it sets out a series of key principles hospital staff should follow when treating ME patients. It has five core principles, which are:
- Patient and Carer Expertise: The individual with M.E. and their carers are the most knowledgeable about their condition. Their insights and experiences should be prioritised in care planning and delivery.
- First, Do No Harm: Hospital staff must be vigilant in avoiding actions or treatments that could exacerbate M.E. symptoms. Even seemingly minor interventions can have significant negative effects.
- Mandatory Reading of 2021 NICE Guidelines: All staff involved in the care of M.E. patients are required to familiarise themselves with the 2021 NICE Guideline as a minimum standard of practice.
- Avoid Encouraging Over-Exertion: Patients with M.E. should never be encouraged or forced into over-exertion. Staff must understand that even minor activities such as exposure to light, short conversations, or sitting up in bed, can be overwhelming.
- Comprehensive M.E.-Specific Care Plan: A detailed, individualised care plan must be developed for each M.E. patient as soon as possible and strictly followed to ensure their needs are met effectively.
Crucially, Callow emphasised to the Canary that these principles in particular were “non-negotiable”. She explained how these were the five key things the focus group members all agreed needs to happen to improve ME patients’ experience on the NHS hospital estate.
Patient-led and patient-centred
There’s also further patient-led principles that expand on these. For instance, one stipulates that hospitals:
Must create environments that are ME/CFS-appropriate. This includes providing quiet and dimly lit spaces, access to personal items like eye masks and ear defenders, and ensuring that all care is tailored to the needs of ME patients.
Another spells out the simple, but regularly disregarded point that encouraging ME patients to be mobile:
can be counter-productive or cause actual harm.
Alongside the core document, the charter also includes a series of case studies from people living with ME. These detail their experiences of care in hospital settings.
Callow came up with the concept of a charter following multiple meetings with NHS officials for her protocol campaign. She told the Canary that:
I kept being told, there is no provision, our infrastructure means we can’t give you a side room, we’ve not got enough money for that, I kept getting the brush off from government. So, I started to think of things that could be implemented to improve healthcare, but on a basic level.
Moreover, she explained that she feels this is vital in:
the absence of commissioned services, protocols, and policies.
Of course, this is all she is also fighting for in her protocol campaign. And those meetings with key NHS personnel were partly the result of a campaign she launched earlier this year.
NHS already engaging
As the Canary previously covered, the Stripy Lightbulb Club and ME Foggy Dog started the new Bed For Severe ME Day campaign in August.
A key part of this was an online letter writing action. In effect, this asked members of the public to send a letter to their local NHS integrated care boards (ICBs). Callow had put together a template for people to use.
The letter asked ICBs to get in touch with ME Foggy Dog regarding the NHS protocol for severe ME/CFS. And thanks to the efforts of people who got involved with the campaign, some ICBs did indeed contact Callow.
She has since engaged with four ICBs, and had positive meetings with key staff at each. For the moment, she is keeping these ICBs anonymous while she continues to work with them. However, she feels that – while still early days with this engagement – it demonstrates clear appetite for the protocol and charter.
Incidentally, Callow is also relaunching her Bed For Severe ME Day campaign to coincide with this. Going forward, she plans to host it annually on 29 October, as a significant date in the calendar for people living with ME. So, if you want to help her reach out to more ICBs, you can find the template here.
A way forward
Callow told the Canary that a common reaction she has encountered in many of these meetings with NHS staff has been shock. She said that:
People in the NHS that I’ve spoken to have said reading the charter, it’s shocking how basic some of the things are.
And they’re right to be. It is horrifying that in 2024, hospitals aren’t giving ME/CFS patients these basic levels of dignity and respect in care. Callow made the point that the five core principles are what all the charter stakeholders said vitally needs to change. In other words, these were missing from ME patients’ experiences of hospital care.
So, she expressed to the Canary that:
In the absence of commissioned services, policies, and protocols, this charter will ensure appropriate and adequate care and support for ME patients on the hospital estate.
Callow’s new charter and protocol are part of the sorely needed action to implement change for people living with ME. And thanks to her persistent hard work and unwavering dedication to the ME community, it looks like that’s starting to pay off.
Featured image supplied
