NHS West Middlesex University Hospital has just placed very severe myalgic encephalomyelitis (ME/CFS) patient Carla Naoum under a Section 2 of the Mental Health Act order. It comes as the disease has taken centre stage in the media in recent weeks, with controversy over Miranda Hart overshadowing the real issues with ME. But Carla’s situation also shows that current campaign groups’ calls for the government to “commission” NHS services for ME will barely scratch the surface of the problem.
Carla: very severe ME/CFS – and now sectioned
You can read part of Carla’s story here. She has now been in West Middlesex Hospital for seven months. Late on Thursday 17 October, an external psychiatrist and a nurse assessed Carla and deemed she met the criteria to be sectioned; in effect weaponising the Mental Health Act.
Doctors have now convinced themselves that her severe gastrointestinal pain is partly psychosomatic. The psychiatrist who did her Section 2 assessment told Carla’s father that:
the physical is always related to the mental
Or words to that effect. West Middlesex Hospital is now saying that her GI pain, along with her seizures, are psychosomatic. She is still unable to take adequate nutrition, therefore her ‘made up’ GI pain is posing a risk to herself – ergo she needs to be sectioned.
As Carla’s father Pierre alludes to in the following video, this was a pre-made decision by the hospital. They have explored what they consider to be most treatment avenues, and she is not improving. Simply put, they want to have complete control over Carla’s treatment – and the only way to do that was by sectioning her:
Saying her GI pain is partly or fully psychosomatic is demonstrable nonsense. Any gastrologist with half a brain cell or the ability to do a cursory Google search would realise this. Carla, like so many other women in this cases, clearly lives with gastroparesis and dysphagia as well. They are well documented – and go some way to explaining why severe ME/CFS patients end up being tube fed.
However, it is all too often missed – not only by medical professionals but by patients, too.
Following NICE Guidelines
One of the major issues with Carla’s case is that West Middlesex Hospital has generally been following NICE guidelines on ME for around four months, now. At first, it did repeatedly breach them – for example, pulling back the curtains in an attempt to ‘get her used to the light’.
This was done by Dr Michael Yousif, an NHS liaison psychiatrist who worked with professor Michael Sharpe at Oxford. Yousif has now been put back in charge of Carla’s care after he tried to change her ME diagnosis when she first went into West Middlesex. He was the one who repeatedly tried to expose Carla to light.
Yes, I’ve named him. So sue me.
One nurse, who I won’t name but have looked up, persistently speaks in a raised voice when she’s around Carla and has been nothing short of a bully to both her and Carla’s mother. Her behaviour is disgusting. Ironically, a cursory dig into her social media profiles shows she’s married to a Jeremy Corbyn supporter. Clearly, any morals her husband has do not extend to her.
However, overall they have followed much of what the guidelines suggest. Carla is in a private room. Light is now blocked out. The staff know to speak quietly (although some don’t always do this). Her community carers have been kept in situ in the hospital – which is highly unusual.
The problems with co-morbidities in severe ME/CFS
Specifically, for example, NICE says that patients with severe ME/CFS can also live with postural orthostatic tachycardia syndrome (POTS) or some level of generalised orthostatic intolerance. West Middlesex Hospital have partially recognised this in Carla, and have prescribed fludrocortisone accordingly.
However, this is not good enough. Yet there are no NICE guidelines for POTS. Any medication away from the basics like fludrocortisone or propranolol have to be prescribed by a specialist – of which there are only a few.
It is a similar story with mast cell activation syndrome (MCAS). Again, Carla quite evidently lives with this. And while the NHS hospital has given her some basic antihistamines, it again is not going far enough. But guess what? There are no NICE guidelines for MCAS either.
And guess what? There are no NICE guidelines for gastroparesis, which Carla is clearly living with too.
ME NICE guidelines do link to the guidelines on Irritable Bowel Syndrome (IBS) – but come on. IBS is not a condition, it is a set of symptoms (much like fibromyalgia is). In people with ME, what our incompetent health services calls IBS is clearly gastroparesis, gut dysmotility, and in some cases dumping syndrome.
As I previously outlined, ignoring these co-morbidities in patients likely contributes to someone developing severe ME/CFS.
‘Specialist services’? Do me a favour.
The repeated calls I am seeing for the Labour government to commission specialist NHS services for severe ME/CFS patients are well intentioned. This narrative around the Royal Devon and Exeter Hospital having a protocol for severe ME in an inpatient setting is admirable.
But let’s be realistic: all any of this will do is possibly – not definitely – stop severe/very severe ME patients from starving to death. It is my understanding that Alice Barrett, who prompted Devon and Exeter to change its protocol, is still being tube fed 18 months later and is severely ill. Sami Berry, who was in a similar situation at the same time, is also still being tube fed.
That’s not a success or an outcome. That’s the bare minimum that the NHS should be doing.
Anything we missed?
Myself, my partner Nicola, and Carla’s parents have tried everything we can think of to change the situation for her at West Middlesex Hospital:
- We recommended her doctors spoke with the Royal Devon and Exeter Hospital. They said they would, and then backtracked – instead liaising with the diabolical Leeds ME service.
- It was explained to them about feeding Carla at an angle lower than 30 degrees. They initially agreed it would be possible, and then backtracked.
- We explained to them about POTS and gastroparesis. These were ignored.
- We took Carla’s MP – now a government minister – to see her. She wrote to the hospital CEO. This didn’t change anything.
- Carla’s parents have repeatedly complained to PALS. All the complaints were dismissed or dealt with internally on the ward.
- Myself along with a GMC-registered NHS consultant made separate safeguarding referrals to the local authority. Both were dismissed.
- We tried to move her to multiple private hospitals – but because West Middlesex had plastered ‘psychiatric’ over her records no-one would take her.
- We had a highly experienced barrister write to the hospital threatening legal action. It was ignored. All other legal interventions could have only happened when Carla was under deprived liberty as part of the Mental Capacity Act – and this only happened twice for two weeks at a time in seven months.
- Dr William Weir has been extensively attempting to communicate with West Middlesex Hospital. Consultants have either refused to speak with him or ignored his recommendations.
But when there are no NICE guidelines on POTS, no NICE guidelines on MCAS, and the NICE guidelines for severe ME don’t even mention gastroparesis or dysphagia – then why would West Middlesex Hospital listen to a Lebanese family, advocates who they’ve never heard of, and an ageing doctor who was ripped apart at a recent inquest?
It’s not just severe ME/CFS
So, the issue here is not that hospitals need to follow NICE guidelines or there needs to be NHS services commissioned for ME/CFS. The issue is that even if that did happen it would still not be enough – because you’re not just dealing with ME. You’re dealing with co-morbidities that the NHS doesn’t understand or acknowledge, either but that are making the patient’s condition life-threatening.
I have witnessed first hand Carla’s situation now for seven months. I witnessed Millie McAinsh’s for four months. I’ve written about Sami Berry, and spoken to her on these issues. And I sat through Maeve’s inquest.
From what I have seen, no current strategy is going to make a difference.
Nothing is currently working for ME/CFS
For example, the flurry of media interest is, in the grand scheme of things, neither here nor there. Twitter account the Royal Free documents newspaper article spanning decades – and we’re still in this mess. The fact right-wing, Murdoch-owned the Times bumped a story on Karen Gordon in favour of one on Miranda says it all.
It published the story a week later – and in its print edition called Karen’s situation a “row” between her and the hospital:
The corporate media is not there to help you. It is there to control the narrative – hence Sean O’Neill told people with ME to stop shouting on Twitter and start contacting journalists. In no other scenario does the corporate media work in marginalised people’s best interests, certainly not those of disabled people. The Times certainly doesn’t. So, why would it and other outlets start now?
The ‘There For ME’ campaign seems well-intentioned but fails to grasp the scale of the problem. When the Labour government is looking to cut welfare left, right, and centre, along with shifting the NHS to make self-and community-care a priority – does anyone seriously believe Wes Streeting is going to set aside £100m a year on ME and long Covid research?
This disease does not exist in a vacuum
You can take that same argument an apply it in the context of the Department for Work and Pensions, too. It wouldn’t want countless people with severe illnesses suddenly having those illnesses acknowledged – and ergo, able to apply for full benefits – when it’s got to make £3bn of cuts.
Part of the reason we have suddenly seen There For ME representatives all over the media is likely due to who they are. The brother of one of the founders used to work for David Cameron, Theresa May, and then Boris Johnson. He went on to work for one of the most notorious political PR firms in the country, and has now set up his own. Ergo, you won’t be seeing Sally Callow or Millie’s mum Lucy on Channel 4 News anytime soon – because it’s not what you know, it’s who you know.
ME does not exist in a vacuum. It exists amid a health service falling apart, a DWP tasked with abusing claimants, social care a privatisation nightmare, a society in a state of disrepair, and a world teetering on the edge amid polycrisis. If our politicians can stand by while an ‘ally’ kills 16,500 children without recourse – then you think they’re going to care about some ‘hysterical’ women claiming they’re sick?
ME/CFS: a health service that doesn’t care
My only conclusion is that the situation, particularly people with severe ME/CFS, is a mess that some “commissioned services”, strong but politely-worded letters, and articles in a corporate media that is a fair-weather friend at best and an active enemy at worst is not going to make a difference.
It certainly won’t make a difference for Fiona Wood – a good friend who lives with severe ME/CFS (and MCAS, and probably POTS and gastroparesis) and who is also now in hospital due to malnutrition. Doctors are already dismissing the severity of her condition.
And none of this is going to help Carla. Myself and Nicola feel we have exhausted all avenues while she is currently in West Middlesex Hospital. She is too sick to go home. But the hospital is making her sicker.
As soon as she is out then we know what needs to be done. But until that point Carla is stuck at the mercy of an NHS hospital and a healthcare system that fails to understand what she lives with – and quite frankly doesn’t care anyway:
Featured image via the Canary
