AN IDEA

Could we possibly put to together our own leaflet to hand to our gps , specialists etc, in our own words, symptoms, prebos with diagnoses, peoples real stories of their struggles etc, I was given the standard one by my rhueemy, but it was no help

[LindseyMid]

What kind of leaflet would be most use? You/we have to think about what you want to achieve and how that could be best done.

We have considered recently putting together a collection of real-life stories, but I'm not sure that a doctor would read this kind of thing as they are most interested in evidence based information and very few doctors will use their spare time to do extra reading around a subject.

Another project that I want to progress this year is developing a leaflet to help people when going to the GP - suggestions for this have included having a checklist of symptoms and info on what happens next.

We're looking for volunteer resource writers on an ongoing basis btw.

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the ones Ive seen are a bit clinical, Im sure if all of us on here put our heads together we can come up with something

[LindseyMid]

Do you think a less medical information resource would be of more help to newly diagnosed patients?

I think this sounds like it could be something good for doctors to give to patients - I initially thought you meant something to help educate the doctors!

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we tend to get bogged down by medical terms, but to have sufferers write it , in their own words, would have helped me, I really thought I was losing the plot,just make it a leaflet we allwished we had, perhaps we could have a series of them, perhaps some for carers, children , etc, and perhaps if our doctors read it to, theyd realise the full extent of what we go through, its not always easy for us to discribe our symptoms to them