A Chance to Make a Difference: Talking to Medical Professionals about Ehlers-Danlos Syndrome

Physio Talk

My mum is currently having physiotherapy after an operation on her shoulder. She got chatting to her physiotherapist, and my condition came up – Ehlers-Danlos Syndrome. It turned out that the physiotherapist has a great interest in the condition, has a few patients with it, and leads the in-house training to the other physiotherapists.  She invited me to come along to give a talk to them during that session.

So that’s how I ended up pretty much taking over the whole training session myself.

The idea originally was that the physiotherapist would cover the medical and exercise aspects, and I would cover the daily living aspects – but my notes grew longer and longer.  This was my chance to help make things better for people with the condition, and there was so much to say!

When you speak to someone with EDS, or other complex chronic conditions you’ll often find that they have had a bad history with a physiotherapist at least once in their past, and sometimes repeatedly.  (Here are just two posts talking about previous experiences here and here.) But sometimes it’s not their fault – we are well aware they have to see a lot of people in not a lot of time, and are generally encouraged to discharge as soon as possible. Many report being asked to pick one joint that is the worst, being handed a couple of exercise sheets and that being the extent of their treatment. Others, including myself, saw physiotherapists for years without them ever mentioning the hypermobility – that could have led me to that crucial  diagnosis.

While I had a lot I want to say myself, I wanted to let other people with the condition have a say as well.

So I went on to a Facebook group that has over 5000 people with the condition on and asked them what they would like to say to physiotherapists if they could. From that, adding in information about our symptoms, our daily lives, the different types and so on, I built up a talk.

The way their training sessions work is that they have an hour built into the day, and all the physiotherapists who don’t have a patient at that time, come along. She expected around 4 to 5 to attend – but when I arrived I was faced with a very small office filled with around 10 physiotherapists. It wasn’t so long ago I would have immediately turned my chair around, found a toilet and locked myself in it until they all went away, but I’m very lucky that over the past few years I’ve been chairing a meeting group and have greatly gained confidence in public speaking – to a certain extent, I’m not saying I’d be happy to give a speech to a large amount of people, let’s not get silly here.

It also helped I was talking about something I was passionate about – the education of front-line medical professionals.

A few of the topics I spoke about included the difference between Ehlers-Danlos Syndrome, Hypermobility Syndrome and Benign Joint Hypermobility Syndrome.  A general overview of how many medical professionals and consultants someone with EDS sees before they get a diagnosis, and the fact that it takes 30% of patients over 10 years to receive a diagnosis of EDS and over 20 years to 50% of patients. I also emphasised the fact that 95% of patients remain undiagnosed or misdiagnosed. I also spoke about which conditions are most commonly diagnosed instead of the correct or underlying cause of EDS, and also gave some tips in what not to do when treating or examining someone with the condition. I particularly emphasised that the condition is extremely variable – and that if we can’t come to a session or a few sessions it doesn’t mean we are uninterested, or lazy – just that it’s not what we are able to do at that moment. And it also depends on which areas of our body are a particular problem at the time, one week an exercise might be fine, but the next week dislocate a joint.

I emphasised to them that the way forward is for more frontline professionals to have an understanding of EDS – particularly GPs and physiotherapists who are often the ones patients see first.

No one expects everyone at those two groups to have full knowledge of the condition, when there are so many conditions out there – but it would be brilliant if when presented with a patient with long-term chronic pain, and hypermobility they referred them onto a specialist. Other things that would help patients is long term care, not just the six sessions that are offered on the NHS before being discharged, and the same thing with hydrotherapy, which should be an on-going treatment, particularly as it can be one of the only treatments that is effective for people with EDS.

They seemed interested, engaged with what I was saying, asked questions, and even asked advice on past cases and whether their care was appropriate (whilst maintaining confidentiality of course). One physiotherapist said that in general physiotherapists like regimented care, i.e. they can pick up a file for a patient that says they are currently doing six reps of exercise 1, and 10 of exercise 2, and so on.  Any other physiotherapist could then pick up that folder and continue their care if needed. However when he had a previous patient with EDS he found that it was completely impossible to treat him in this way. One week he could do a decent amount, but the next all he could do is lay on a table whilst the physio mobilised his joints for him. Other sessions he couldn’t even make it to the hospital at all. He said that he had to be really flexible with the patient – which emphasised what I was saying.

I also told them about my previous physiotherapy sessions, where I spent the first session explaining how I might not be able to make every session, I was having a lot of flare ups and spending a lot more time in bed unable to do anything and she seemed really understanding. And then it happened, I had to cancel a session and it turned into a few weeks as it was a really bad flare up, and I called to update her and they said just call back when you’re ready, which I did, only to find that she had discharged me.

I was too exhausted to go back to the beginning, so just went without.

Another physio suggested that on occasions like that it would be helpful for the physiotherapist to visit me at home, but of course I’ve never been offered anything like that. Also when talking about ongoing hydrotherapy, which I have been told previously is impossible due to the waiting list – they informed me they do have a few rolling programmes, including one for paediatrics with hypermobility, and another for people with Rheumatoid Arthritis – so it is possible. I’ve now got the name of the manager, and I’m going to contact her and explain how important it is for this to be put into place – particularly when a lot of us are being told that the ‘land based programmes’, as they call them, are inappropriate for us.

Hydrotherapy, for a lot of people with EDS is very good because the water supports the joints, so dislocations are less, the warmth helps with the spasming muscles and we generally find we can do a lot more in the water.  Of course this doesn’t apply to everyone, particularly if they have bad POTs alongside, as the heat can cause havoc with feeling faint and dizzy.

In summary I really enjoyed giving this talk, and have been invited back in July.

Patients talking to medical professionals is the way forward t0 them gaining an understanding to the reality of life with a complex condition, without reading a little paragraph in a textbook.

So I commend the physiotherapist that setting this up, and I hope more will do so in the future.

Have you ever has an opportunity to talk to medical staff  in this way?  What would you have said?

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Like? Please share.Share on Facebook0Tweet about this on Twitter0Pin on Pinterest0Share on Google+0Share on Reddit0Share on StumbleUpon0Email this to someone

Submit a Comment

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

CommentLuv badge