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EDS now has lots of huge online communities, so why are drs and nurses still not spotting and understanding it?

Jay66 profile image
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I am on 3 Facebook forums for EDS sufferers (I like EDS UK best), plus Inspire.com and here. I am amazed at how it has grown in the last four years. But still, we are having to educate the doctors, nurses, midwives and physios we see every day. I just don't get it. I cannot post any of the really depressing stories from the FB sites as they are closed, but people are still posting things like this all the time:

quora.com/Why-is-there-so-l...

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Jay66
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cyberbarn profile image
cyberbarn

One of the problems is that there are so many diseases now. Medicine has expanded hugely just in the last 10 years with the advent are better imagining and testing. Just look at genetics and how rapidly it has grown since they first sequenced the human genome.

It used to be that a doctor could memorise just about everything they needed to know in med school, and med schools are still set up that way, with people memorising, cramming, doing the exam then qualifying. Although it is changing.

They are constantly discovering new diseases or reclassifying old ones. I once saw that it would take a doctor 40 years to read up on every known disease if they did one a day, and that wasn't taking into consideration all the new ones.

So the question shouldn't be why don't they know about EDS and why do we have to keep educating them. The question should be why are some doctors and nurses resistant to being educated by us.

There has been a shift in medicine from the patriarchal model of illness to a patient centred biopsychosocial model. Some health professionals work well and treat patients like the experts they are, co-producing their care. But it will take some time for others to catch up and feel comfortable with this style of doing things.

No health professional will ever be able to know everything about everything. And no health professional will every truly know what it is like for each individual patient. It isn't that we need to have health professionals educated in EDS, we need to have health professionals educated in patient centred health care. After that, everything else will follow.

Jay66 profile image
Jay66 in reply to cyberbarn

A really thoughtful and thought provoking reply - thanks cyberbarn ! You are so right that they should not be relying on personal memory and knowledge - I think the day has come for a centralised knowledge base giving drs everything they need to know how to deal with and treat patients with less usual ailments.

cyberbarn profile image
cyberbarn in reply to Jay66

The Royal College of General Practitioners (RCGP) is doing just that. They are preparing a Tool Box for EDS right now. It is being written by a GP with EDS. The RCGP are in charge of training GPs after they have graduated from med school and provide toolkits for other conditions too. GPs have to go through a revalidation every few years. They have to show that they have kept up with their training in order to carry on being a GP, so it isn't like they only learned what they know in

Every CCG also has a website with information such as the pathways that they can follow locally. Some GPs don't like to use them though as they take time and the only have 10 minutes per appointment in which to do everything, including paper work. Which of course they can't do which is why they have such long days.

Something that is slightly more difficult is to deal with each of the bodies that support each of the Allied Health Professionals. There are 14 different types of AHPs all supported by their own organisations.

So that although there are knowledge bases available, and with the internet that includes all the peer reviewed research papers which everyone that works for the NHS has access to, it still takes time for people to access this information.

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