If you’ve ever broken a bone, or god forbid had cancer, then I’m fairly sure your experience of the NHS has, on the whole, been positive. Sadly for millions of chronically ill and disabled people, our out-of-date, arrogant factory farm health service is probably making them even sicker.
How much going on…???
My girlfriend Nicola Jeffery is quite the medical thing. Disabled, chronically ill with multi-systemic diseases and illnesses, she ain’t that well. But to look at her, you’d probably think there was nothing wrong. That’s what it’s like to have ‘Invisible Illnesses‘.
Here’s my helpful attempt at collating all her symptoms through the medium of art. I like to call this work part of my “For Fuck’s Sake Period” stylistic phase of painting:
You can read Nic’s journey so far here and here. But in short she’s currently living with:
- Hypermobile EDS (hEDS)/ Hypermobility Spectrum Disorder (HSD). She was diagnosed as hEDS before the criteria changed. So she now fits the HSD bracket.
- Myalgic Encephalomyelitis (ME).
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Non-epileptic tonic clonic seizures.
- Polycystic Ovary syndrome.
- Temporomandibular Joint Dysfunction (TMJ).
- Presence of the (allegedly dormant) Epstein Barr Virus (EBV) and the Cytomegalovirus (CMV).
Out of all these, POTS, Polycystic Ovary Sydrome and TMJ were diagnosed on the NHS. The two viruses were found by accident in an NHS bone marrow trephine biopsy.
The HSD, the ME, the CCI and the AAI were diagnosed privately. We did this for the HSD because the waiting list for the NHS was two years.
For the ME, Nic is having groundbreaking tests which aim to identify the viruses that are active in her body – the ones the NHS would say are dormant and benign. If you know about ME, you’ll know where we’re going with this. If you don’t, you may like to read this.
Neither CCI or AAI are even recognised on the NHS, and the former was diagnosed by a doctor in Barcelona.
Two years of change
All of these diagnoses have happened in the past two years. Before that, Nic was told it was ‘all in her head’, sectioned because of this under the Mental Health Act (and discharged with no mental health diagnosis), then told she had Fibromyalgia, given antidepressants, told to think happy thoughts with some Cognitive Behavioural Therapy (CBT) and told to pull herself together with some Graded Exercise Therapy (GET, pdf).
What changed? Read about that here.
But ultimately, what’s held Nic back for so many years is sadly the NHS.
Because, in terms of people with multiple chronic illnesses, the NHS is simply not fit for the 21st century. In fact, I’d go so far as to say that for many it is actually detrimental to their health.
The National Health Service
These are Nic’s medical history folders. The middle and right ones are for the NHS:
This is the problem. The NHS, which I fully believe should be free for everyone (not free at the point of use, completely free without contribution) is a wonder for cancer patients. It’s a miracle for trauma injuries. Our health service is a blessing if you have leukaemia. But it is broken for people living with complex, multi disciplinary diseases and illnesses.
The NHS fails Nic and so many people like her.
Boxing you off
Medicine is extremely compartmentalised, partly due to an increasingly out-dated view of health, also due to the influence of pharmaceutical companies and moreover due to the increasing involvement of private firms in public health.
It’s sadly also due to medical professionals who are more interested in their own paychecks, and mortgages, than what is best for the patients. Interestingly, we find the lower down the NHS food chain you go and the more ‘everyday’ consultants/bods you see, the worse the self-serving attitude and disinterest gets. The health service’s top professors and consultants in our experience have been the most understanding, honest and helpful.
As Nic always says of the compartmental nature of the NHS:
I’m just keeping people in jobs…
One thing leads to another…
While this currently works for ‘mainstream’ illnesses like cancer, it is beyond ineffective for people living with diseases like ME and Lyme and illnesses like EDS, CCI and AAI. Because these conditions affect every part of the body, the response from the medical profession should be an overarching, holistic one. One professional or centre should deal with everything. Because, for example, the intersections between the autonomic and digestive systems would then be dealt with together – like how AAI can cause colonic motility dysfunction. That’s NeuroRheumaGastrology. Google it. It doesn’t exist.
Great Ormond Street, for example, deals with hypermobility. But when the NHS doesn’t even recognise conditions like CCI and AAI then it is effectively like putting a sticking plaster on a broken leg. You’d think alarms bells would ring when research shows [pdf, p3] nearly 50% of EDS patients report headaches. But no, CCI and AAI are outside the realms of the NHS.
Admittedly, the NHS ties consultants hands somewhat. As one of the most respected doctors within the EDS and chronic illness field of research told us:
The NHS is like a circle. There’s a white area in the middle where we always sit. Then there’s a grey ring outside of that, and a dark grey ring outside of that. We can sometimes go into the grey ring. But we’re never allowed to enter the dark grey area.
This conversation was in the context of diet and high intakes of vitamin and mineral supplements as partial treatment options for ME. The consultant categorically stated that outside of the NHS:
Our research is leading us towards this holistic approach, away from pharmaceuticals, physiotherapy and pain management. But I can only tell you what is in the white, and possibly grey, areas. That’s in the dark grey area.
He then had to revert back to his NHS script. It was one of the most telling conversations we’ve ever had with a NHS medical professional.
Fuck the GPs
‘Go to your GP!’ I hear you cry. ‘LOL!’ I yelp back at you.
GP’s are often ineffective. Our current one cried when Nic first broke the situation down to her. She cried because she felt overwhelmed by it all.
Try fucking living with it.
But as Nic describes, GPs are like car drivers. They take their test once, then it’s up to them if they keep up-to-date or not. Her GP, the most proactive one she’s had, doesn’t know anything about CCI, AAI, EDS, POTS or ME. We had to direct her to the information.
But still, as one person living with ME pointed out on Twitter, arrogant medical professionals put signs like this up:
Fuck you and the middle class, educated-beyond-your-intelligence horse you rode in on.
That may well have been my response if I’d seen that. There’s an arrogance and classism that pervades the medical profession, along with misogyny. Once again, Nic is a prime example.
Left for dead?
For a decade she was ignored or not listen to. Her symptoms have been consistent. Then suddenly I come along, and within two years she has six new diagnoses and has seen (on the NHS) some of the top neurogastroenterologists, haematologists and dermatologists in the UK. Something to do with my lack of colloquial accent, use of big words, passive-aggressive demeanour, verified Twitter account and the cock and balls between my legs? Make your own minds up.
But still, despite all this, Nic has no conducive treatment plan. At this point I suggest you read my work on PACE trial. If you know about it, then contrary to popular belief it doesn’t just affect people living with ME. It has implications for EDS, Fibro, “MUS“, “MUPPETS” (yes, “MUPPETS”) and other groups of people. It is this, in part, which has made the NHS so toxic for Nic.
Sorry, sorry and sorry again
So, her and countless others like her are left with folders like the middle one in the picture. They’re crammed full of letters, diagnoses, repeated “sorry’s” (the most infuriating word for many chronically ill and disabled people) and metaphorical shrugging of shoulders from every single NHS department. Because there is not one that deals with her health as a whole. Therefore no one is able to see the answers to her apparent health conundrum.
As a leading immunologist and microbiologist recently told us:
[The NHS] may as well have ‘Big Toe Consultants’…
The implication he was making is that the NHS and its structure is so broken up it’s pretty much broken itself.
What they are also often left with is incorrect diagnoses like Fibromyalgia and huge amounts of chemical painkillers. Or medical professionals tell them mental health is playing a major part, and shove them on antidepressants. It is terrifying to think how many people could be living with ME, CCI or AAI, but are eking out their existence with ‘Fibro’ and heavy doses of meds.
Into the devil’s lair
Currently only private medicine offers anything near an effective approach for someone like Nic with her cupboard full of different diseases and illnesses.
But what it also offers is an understanding of chronic illness that stands in stark contrast to the arrogance of the NHS, with it’s sneering signs about “Google”:
There’s a reason people with so-called ‘rare’ illnesses are called “Zebras“. It’s because medical professionals are taught to think that the simplest diagnosis is the correct one. That is, they’re taught that:
When you hear the sound of hooves, think horses, not zebras…
We see you, fellow Zebras. You’ve got this.
Interestingly, as a senior neurologist at one of the most respected NHS hospitals in the UK (who had never heard of CCI) told us:
Chronic illnesses are going to be the new cancer and heart disease.
Truth to power. They are. Yet the 21st century NHS, a 20th century factory farm production line where sick people go in one end and healthy people are supposed to come out the other (or have palliative or management care), is in no way equipped for this growing epidemic.
So, that’s why I’ve already spent £3,000 privately to get Nic to this point. Money I don’t really have but money I’ve found because I’ve had to. It’s already run out and we’re not even on treatments, yet – just diagnoses.
As rabid, far-left, borderline anarchist troublemakers, it has been a moral conundrum for us. But for me, it’s one that was quickly solved.
Nicola: changing the world
I cannot stand idly by and watch the NHS catastrophically fail the person I love, when I know the solutions are out there. Yes, I’m playing into the very system (corporatist capitalism) that I despise. But my love for Nic is too much to have allowed this to continue.
Moreover, by fixing her health to the best it can be, we are creating weapons in our armoury to continue to fight the system. The more evidence the chronic illness and disabled community have, the better equipped it will be to fight back. Nic’s medical journey is part of that.
I’m convinced she can help change the world. So, we’re going to get her well. But it will sadly be without the NHS.
Most of Nic’s medical treatment now has to be private. If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
I’ve sent you a PM. There is a group of us in the UK with EDS,CCI and AAI that are fighting together for awareness and treatment paths. It would be great if you would join us.
My daughter has been diagnosed with M.E and POTS. I know what a struggle it is. Wishing you all the best
Here in the U.S., our healthcare system is just as broken, but in a different way. We pay huge amounts of money to get no results, on top of arrogant attitudes. I’m seeing a top ME/CFS specialist, and was greeted at the beginning of one appointment with him yelling at me. Because he’d misremembered something he’d said to me during my previous appointment. When I saw my first specialist 20 years ago–the one who diagnosed me at UCLA and was very knowledgeable about ME/CFS–I asked him if there was anything I could do. He patted my leg, said “listen to your body,” and walked out of the room. If he’d taken 5 minutes to explain post-exertional malaise, he might have saved me getting extremely ill by pushing too hard. I’ve gotten the best help, not from doctors, but from others with this illness.
I am living with hypermobile EDS, Chiari Malformation and chronic recurrent vestibular migraine. I found myself shouting “yes, this. THIS. BLOODY WELL THIS” at the screen. This is the best bit of writing I’ve ever read about what it’s like to have to navigate the NHS with a chronic illness. Even when you do finally get a diagnosis after years of being fobbed off, there’s no help, no treatment.
Thank you – I’m really pleased it resonated with you, but also sad that people can relate to it, as it shouldn’t be like this. Thank you for reading x