Healthcare Plan

Each month the ME Association in the UK do a quick online poll on various subjects, which I personally feel are a great way to keep the Charity up to date on the experiences of their members.

Their current poll asks whether ME patients have a ‘healthcare plan’.   According to the 2007 guidelines on ME/CFS provided by NICE (the National Institute for Health & Care Excellence on whom healthcare professionals in the UK rely for information) each healthcare professional should “make a care plan with you, which is looked at and kept up to date every time you see a healthcare professional about your CFS/ME.  It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details of the healthcare professionals caring for you.  Your care should be given in ways that are suitable for you. This may mean having some tests or treatments at home or getting support and advice by telephone or email.”  Dream on, is all I can say to that!

I haven’t seen a doctor about my M.E. in nine years and only saw one then because I requested it as I had long-standing, unremitting pain (which turned out to be due to undiagnosed hEDS which I ended up realizing myself after the M.E. specialist was no help whatsoever).  I haven’t seen my GP about my M.E. since that time and there is no offer of regular monitoring, despite the fact I suffer with 4 chronic diseases and am menopausal.  There is most definitely no Plan.

There is also no Plan in place to manage or monitor my hEDS and I haven’t seen anyone to do with my genetic disease in over 5 years.  No……..wait…….. that’s not strictly true.  I did realize it had been 4 years since my last bone density scan and I should be having them every 3 years, so I contacted my GP to ask to have one done and she arranged it.  I didn’t actually see her though, it was all done over the phone and wouldn’t have happened at all if I hadn’t requested it.

The situation is even worse in respect to my MCAD.  There are no specialists in the north of England, my GP has never heard of it and since my diagnosis back in 2013 I’ve just been left to get on with it.

I have to be honest, though, and say that in respect of my M.E. I wouldn’t consider a healthcare Plan anyway.  Over the past 24 years, my dealings with the NHS have been exclusively negative with huge amounts of disbelief and pushing me to do Graded Exercise despite the fact that the one time I tried it I ended up in hospital with seizures for 3 weeks and was bedridden for 2 years afterwards.  A psychologist or psychiatrist is always involved (during said 3 week hospital stay I didn’t see one immunologist or neurologist, but I did see a psychologist who told me I was anorexic and wouldn’t accept the reason I was struggling to eat was that I was too weak to chew solid food).  I’m sure my medical notes are peppered with comments about my symptoms being psychosomatic or exaggerated for attention.  In addition, there are no ‘treatments’ for M.E., so I’m not entirely sure what I’d be seeing a doctor for.  Having said all that, however, I still think someone with healthcare needs as long-standing and complex as mine should be offered a yearly check including a full blood work up, which is particularly important as one ages and becomes more prone to things like heart disease from years of inactivity.

I feel differently in respect of my hEDS and feel that a Plan would be useful.  I’d like a specialist point of contact – someone I could ring for advice on when I should be having a scan or x-rays after an injury and a check kept on the progression of my disease.  Realistically I should be able to ask my GP if I had a question, but being as though she knows about as much about hEDS as my next door neighbour she probably wouldn’t be all that helpful.

I’d absolutely love to be having my MCAD monitored and a Plan put in place for my flares or if I need to go into hospital for other things, but I know that’s pie in the sky and I’m more likely to win this weeks Lotto.

I’m not quite sure why I’ve always been completely ignored by the medical profession.  Is it because my health is too complex and doctors feel overwhelmed by everything that’s wrong with me?  Is it because I live in a rural area with no specialists?  Is it because I’ve been ill for over two decades and have tried every treatment known to man so am written off?  Probably a combination of all of the above, however I should still be being monitored and a check kept on my progress and I do feel very let down that this has never happened, not even when I was bedridden for ten years and so ill I nearly died.  If I couldn’t even get a GP to come to the house to see me then it’s no surprise I don’t see anyone now I’m less severely affected.

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7 thoughts on “Healthcare Plan

  1. Livvy Woodburn

    Dear Jak, I agree very much with this post. I just wanted to let you know of 2 north east doctors I have recently referred to that may help. Dr Yanakkou at Durham is specialist GI clinic for Neuro Gastro probs and they treat eds/pots/mcad patients. And Prof. Spickett at Immunology RVI Newcastle who manages eds/me/mcas patients.

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    1. Jak Post author

      Thanks Livvy – it was Dr Spickett who first diagnosed my ME 24 years ago! I have seen him 3 times since but have to say he hasn’t helped me in any way – that’s because there is no effective treatment for ME 😦 Plus he’s now part-retired.

      I’ll keep Dr Yanakkou’s details on file though.

      Jak x

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  2. lavenderandlevity

    Are we supposed to do bone density scans with EDS, or is that a post-menopausal thing? I live in the U.S.: we don’t even pretend at chronic care plans or truly guarantee health insurance. I am like you – initially diagnosed myself then had to fight for proper evaluation to confirm – so I always have to check if there are things that *should* be happening in EDS management I’ve never heard about.

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    1. Jak Post author

      There is research evidence that bone density can be reduced in EDS, even in men (if you Google ‘bone density ehlers-danlos’ you can read the papers). We are at increased risk of both osteopenia and osteoporosis.

      I was deemed high risk as I have been unable to exercise for decades due to my ME and have a very strong family history of early osteoporosis (maternal grandma, mum, maternal aunt and maternal cousin all osteoporitic by the age of 55), so started having 3 yearly scans in my mid forties, pre menopause.

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      1. lavenderandlevity

        We have a fairly high history of at least osteopenia and/or osteoporosis, too. I always found that odd as a kid since everyone seemed to down milk like it was going extinct (cow or some other calcium-fortified type if allergic.) I know the very high rates of mitral valve prolapse and our bad eyes are likely part of EDS. I hadn’t considered osteopenia, honestly. Good to know for when I get to my forties. I wish someone would write an “EDS across the lifespan” book so it was easy to tell what all was related to it and what just a concurrent family history – and what to possibly expect.

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        1. Jak Post author

          I personally don’t think dairy products have much to do with osteoporosis – in most cases it’s genetic IMHO.

          As you know from reading my posts, I get furious that none of the EDS charities have info for older adults, especially females who are about to hit the menopause. No-one seems to care about us :-/

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          1. lavenderandlevity

            It used to be the same for ADHD, but I’m starting to see some resources talk more about aging with ADHD, especially post menopause. Probably because enough women suddenly diagnosed in their thirties started demanding it. I wonder how many strongly worded letters to EDS charities it would take to get some info. There are definitely adults of the prior generations of my family who could use it now they know what they have. (Though, it’s odd to me how many who clearly fit the profile are in denial about it. I think your mom is like that, too, right? Add in other family dysfunction and a history of shame, and suddenly defective collagen is somehow also something to be ashamed of, I guess? Idk…)

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