EDS Support UK have caused a bit of a ruckus on their Facebook page this week by stating “You may feel like you’ve made a breakthrough when you finally get a diagnosis, only to find that you are discharged and there is no-one to oversee your care as would be the case with other illnesses that affect multiple systems of the body. While there is no doubt that this lack of support is unfair, it is perfectly possible – indeed necessary – to learn to effectively manage your condition yourself.”
I must admit when I first read it I thought to myself “are you kidding me?!” and can see where the anger from patients is coming from, but on reflection I think I can see where EDS UK intended to come from, even if the phrases used weren’t particularly well thought through.
There are just 2 specialist NHS hEDS centres in the entire country (Sheffield and London) and if, like me, you live hundreds of miles from either they might as well not exist at all. To make matters worse, if you have other conditions such as M.E. they won’t take you on as a patient, which I’ll explain further below. So it actually is necessary to learn to manage your condition yourself. But, and it’s a big BUT, when first diagnosed you really, really need some help and advice on how to do this and it is non existent. Nine years after diagnosis I still don’t know the difference between a sprain, a tear and a partial dislocation – the pain feels the same to me – and I have had no guidance on how to distinguish between them or how to manage any one of them. When I woke barely able to breathe or move due to what I guessed was rib slippage I had no-one to turn to for confirmation or advice on how to manage what was a scary and intensely painful symptom. So while self-care is a vital part of any chronic health condition it must be based on adequate information and advice, and it’s that which is lacking from the point of view of most hEDS patients.
I think most patients took issue with the phrase “it is perfectly possible……to learn to effectively manage your condition yourself” which, actually, isn’t the case for some people. hEDS is a spectrum disorder and while for those mildly or moderately affected self-care, with the guidance of trained professionals, may be adequate, it may not be suitable for those on the more severe end of the spectrum.
The next part of the EDS post which caused anger was this: “The day-to-day management of EDS is based around the right kind of exercise, physiotherapy and pacing”, which is all well and good if you can do exercise or tolerate physio. Because of my M.E., however, I can’t so I am just left to get on with it on my tod. Even if you can tolerate physio the number trained in hEDS is minuscule and, as EDS UK point out, any physio has to be the right kind because the regular kind can make us bendies worse! I’m lucky where I live in that some of the physios at my local hospital have received special training in hEDS, however they discharged me because the exercises they were giving me made my pain and fatigue so much worse due to my M.E. (prescribing exercise to an M.E. patient is a bit like giving sugar to a diabetic), which is why the inpatient hEDS unit in London doesn’t accept patients with an M.E. diagnosis! So I have been forced into self management because no-one wants a complex patient like me on their books or has any idea how to help me.
Many people with hEDS also have other conditions. M.E. is common, as is Mast Cell Disease, but also other stuff like arthritis, auto-immune disorders and POTS/dysautonomia and although the EDS UK post mentions you will need help with these the help simply isn’t there. So not only are you left to manage hEDS on your own you’re also left with all these other conditions for which there is no help or advice. And I think it’s for this reason so many people were complaining about the EDS UK post. Yes self care is an important part of managing hEDS but it shouldn’t be the only part, yet for the majority of patients it is.
Many support organizations are based in the South East, where they tend to live in a lovely little bubble. I have a friend who lives in London and there are no less than 5 hospitals within a three mile radius of his house, whereas my local hospital is 30 miles away and the nearest specialist hospital for complex issues is 90 miles away. Specialist care in Wales, N.Ireland and Scotland is even worse and I do get immensely pissed off at the attitude of charities who think everyone in the country has the same access to care as those living in the South East. To make matters worse, when they hold conferences they are almost always in London, or if not London Birmingham, which if you live in Abergavenny, Whitehaven or Aberdeen might as well be on another planet. As you know, I am seeing a MCAD specialist in Sheffield next month and am having to make a 6 hour return train journey for the privilege of having a half hour appointment! Much more needs to be done to hold events, particularly teaching seminars, around the country so that our local doctors, physios and health care providers have the opportunity to receive information on our conditions and are then better informed to help us, and also so that we patients can attend and glean vital information on self care. Being London-centric is my biggest complaint of all the charities.
So, while I agree that self care is a necessary part of managing hEDS it needs to be based on information, advice and guidance given by professionals trained in hEDS, and it’s this which is lacking. It also can’t be the only type of care available, and again for the majority of patients there is no other help, not only for their hEDS symptoms but for all the other complex conditions which arise as part of, and alongside, their connective tissue disorder. It’s a situation which needs more urgently addressing.