Continuity of Care

When I first developed ME in 1994 it was only just starting to be recognized.  Despite 10 years of horrendous symptoms I was basically just left to get on with it and the only care I received was from my GP, who to give her kudos was sympathetic but was at a total loss to know what to do with someone as ill as me, particularly when I couldn’t tolerate drugs.  I know this experience is shared by many other patients.

I’d hoped things would improve in the last decade, when the Chief Medical Officer in the UK finally announced that “ME was real” and could be “very disabling”, and the Government committed funds to set up ME/CFS clinics all over the country.  My hopes were dashed, however, when the Clinics focussed on people with CFS and the ‘treatment’ offered boiled down to some mindfulness meditation (to help cope with changes in lifestyle) plus advice on pacing and gradually increasing activity (which isn’t relevant if you’re bedridden) and in any event were only open to those with CFS well enough to get to them.  Domiciliary (ie home-care) services for bedridden or housebound patients were supposed to be part of the package, but in reality rarely were.  The medical profession still don’t know how to manage people with severe M.E. and the majority of patients are left with no care whatsoever.

When I received my Ehlers-Danlos diagnosis I knew it was considered a rare disease, so thought I’d have to travel for diagnosis (which I did – 100 miles to see the Consultant) but naively thought that once diagnosed I’d be able to receive continuing care closer to home.  I was wrong.  EDS is a complex illness affecting many bodily systems and areas of medical care: rheumatology for diagnosis and possible ensuing arthritis; gastroenterology for the many and varied GI issues; physiotherapy to keep muscles strong (which, due to my M.E., I couldn’t do no matter how gentle the exercises); regular eye and dental checks; neurologist for migraines, dysautonomia (POTS) and spinal issues; occupational therapy for hand splints and home adaptations; orthotics for other splints and braces; podiatry for feet/ankle issues and insoles; possibly dermatology for skin issues and genetics to determine the type of EDS you have.  And whilst I’ve visited many of these medical departments I’ve done so because I specifically asked my GP for referral and found out who best to see – yet again managing my own care. With the exception of the physio and OT, all the appointments have been soul-destroyingly disappointing, as none of the consultants had any clue about EDS and could offer me no advice.

The thing I’ve found most frustrating is that no-one is co-ordinating my care.  EDS is a progressive disease (despite what you might read online!) particularly as you age and I’m going to need ongoing care for the rest of my life.  I’m currently suffering from a hip issue which is causing me no end of grief, makes walking painful and is affecting my sleep.  I just want to be able to ring someone up to ask what I should be doing – should I be exercising more to stop it being so stiff, resting to let the ligaments heal, splinting it in some way for stability, or having an x-ray or scan to see if there is an actual problem with the ball & socket joint?  Yet there is no-one to ask.  If I go to see my GP there is a 4 week waiting list, then all she’ll do is refer me to rheumatology at the hospital where there is a 4 month waiting list.  By then my hip will either be better or could be beyond repair and I will have spent months in pain, when possibly the only thing I need to do is have bed-rest for a month because I have a ligament tear.

Many other diseases have specialist nurses you can ring for advice.  My Mum has both a heart nurse and a lung nurse.  At my GP’s practice there is a diabetic nurse, a stroke nurse, a Multiple Sclerosis nurse and a Parkinsons Disease nurse (and probably other nurses I don’t know about).  Needless to say there is no EDS nurse :-/  Again, this is a common complaint amongst sufferers.  There is one specialist EDS centre in the whole of the UK and it’s in London………300 miles away from me which really is a national scandal.  If you live in the south east of England you really do receive excellent health-care, while the rest of the country receives virtually none particularly if you live in the north, Scotland or Northern Ireland.

The situation for people with Mast Cell Activation Disorder or Histamine Intolerance is even worse.  It’s exceptionally rare to receive a diagnosis on the NHS, so most people only get diagnosed if they’re lucky enough to be able to afford to see the one private consultant in the whole of the UK who’s clued up on these diseases.  Yet again he’s in London………..300 miles away.  Any kind of ongoing specialist care is not only geographically unfeasible it’s financially impossible, at least for me.  My GP has never heard of the disease and I know 100 times more about it than she does.  Once again I’m self-caring, yet I’m not in a position to do things like prescribe myself an epi-pen and my GP won’t do it unless she’s been told to by a Consultant.

Lucky for me I’m well educated and intelligent enough to research the illnesses from which I suffer, confident enough to ask my GP for referrals and to know my legal rights if she refuses, and lucky enough to have parents who will fund private appointments so that I could at least be diagnosed and help out with buying the aids I need to be able to live independently (eg. they bought my mobility scooter for me, as well as my robotic hoover and push button kettle) – not everyone is as fortunate. There needs to be a specialist nurse or point of contact in every GP’s surgery for those with rare or chronic illnesses, who can monitor and co-ordinate care, make urgent GP or Consultant appointments, and authorize blood tests, x-rays or scans if needed.  Sadly, I can’t see it happening any time soon so I’ll just crack on alone, as I always have.

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7 thoughts on “Continuity of Care

  1. kneillbc

    I hear your frustration, and empathize with it. In Canada, specialists for MCAD are all in Toronto. I live in Vancouver- a five hour flight away! I got the name of a local specialist, a haematologist, who, it turns out, will only see patients who Mastocytosis. Of course, nobody will do the testing for Mastocytosis either. Why? This specialist, over the phone, having never met me p, nor seen my chart, said “I don’t think that is what it is.”, without reason, justification or explanation, so now I can’t even get the tests done! Ridiculous! It will have to hit a crisis (again) before I will get any further diagnostically. In the meantime, I live as if that’s what I have, because, well, the list of symptoms fits PERFECTLY with MCAD, and nowhere have I found anything else that is even close. So, I know. Thank goodness I’ve found a great pain clinic, and even though my MCAD hasn’t changed, my back pain that I’ve had since I was a teen is easing. I can’t complain at that!

    Hopefully, this age of information will continue to help people with rare and/or difficult diseases, because the more we share with each other, the more we can advocate or our needs and get the care that we need!

    Karen

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    1. Elizabeth Milo

      Karen, the rheumatologist I saw in Seattle diagnosed me 15th MCAS and did all the tests (which were normal). He’s not an expert by any means, but he seems willing to experiment with Rxs. Is America an option since you’re so close?

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      1. kneillbc

        Thanks Liz. It may become an option. If you are unable to find the specialists that you need here (as determined by your doctors and the British Columbia Government), they will pay for you to go down to the US. (medical costs, not travel costs, but those are minimal in compairaison). Basically, if the specialists here are willing to say ‘I don’t know.’, then it’s possible. That is unlikely to happen until I’m off the opioids all together. Private pay is always an option, but it’s astronomically expensive- especially tests and hospitalizations. I’m hoping to get a few more tests done here, and then maybe push the docs to get me referred to the US. I also need to get my passport done, as it has lapsed, and my kids’ done as well! I’m terrible at paperwork the best of times!

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  2. POTSNJ

    Yes. I don’t know where to turn either. No Doctor around here knows anything about EDS, my autonomic specialist hasn’t been able to help with the POTS and the ME/CFS Doctor didn’t have much to offer either. Glad you said EDS is progressive. I completely agree and don’t understand how Doctors see it otherwise. My symptoms worsen over the years, new ones are added and my functioning declines over time. That to me is “progressive.” Hoping science will catch up to us, but not holding my breath that it will happen anytime soon. Not to be downer, but that seems to be reality for now.

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  3. Shelly

    You’ve just explained my while life. . I’m 39 (female) , live in the states, new Mexico (yes we speak English, most of us) lol. . I’m a disabled US army veteran (10 years) and I am coordinating my own car as well IF THE DOCTORS DON’T FIGHT ME ON IT! it’s hard, I know, and brutally damaging to the mental state! I wish you all the luck!

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    1. bertieandme Post author

      Sorry to hear you’re in the same position Shelly. As if life with chronic disease isn’t hard enough, you then have to fight for help and care 😦 It’s a disgrace. Jak x

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