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And the really worrying bit from the same Appendix:

Nice short (2 page) article that can be printed and handed to your GP if they seem uncomfortable about your request to record the consultantion or if they try to refuse it (UK based, but possibly applicable in other countries): https://www.bmj.com/content/bmj/364/bmj.l1101.full.pdf Edit: Or...

Merged thread I can't see an existing thread so am starting one to discuss a patient's right to record their medical consultations with GPs, Consultants and other health professionals. I thought many members may not be aware of their legal rights around this issue and that doing so may help...

I read the Boss ear pads wear out (not the actual headphones) but these can be replaced. I believe they are easy to find on Ebay.

I'll start a thread when I am able (soon hopefully). The lenses can be made up either with no prescription or with a prescription, then fitted to any standard eye glass frames by your own optician.

This is what the authors of the book argue.

I see a paper that is a follow-on of this book/website has been discussed previously on the forum: https://www.s4me.info/threads/key-concepts-for-informed-health-choices-a-framework-for-helping-people-learn-how-to-assess-treatment-claims-and-make-informed-choices.2128/ In the paper they do...

Apologies too - I'm autistic, so not good at softening my responses with social niceties. I just didn't want members to be put off trying to challenge negative responses by GPs or hospital consultants/administrators.

Long Term Conditions. Its the Medically Unexplained Symptoms which CFS/ME falls under, as well as things like Irritable Bowel Syndrome, Fibromyalgia etc.

Your post was written in 2017. I have posted the most up to date legislation (2018) and the link that provides information to whom and how to complain if your request is refused. It is up to individuals members if they wish to use this information and if they want to expend the necessary energy...

Well, at least we have David Tuller on our side, thanks to the M.E. community! Sorry, that should be - at least we have a man called David Tuller on our side...

But the MUS and LTC part is still being rolled out. Additionally, in the pilot areas many of the projects were quite different from the form it is going to take now. My CCG are actually putting off implementing it as long as they can, but it is being imposed on them from NHS England (I was...

There is a drive for GPs iin England to create a 'Summary Care Record' for all their patients. This can be shared with other care services outside the NHS. You do have the option to 'opt out' of having one or giving consent for sharing health information outside the NHS...

I think the rollout of the IAPT Medically Unexplained Symptoms agenda is going to throw a lot more patients into our 'reality'. It will be interesting to watch how this unfolds with other patient groups. I wonder if they will start looking to us for some guidance in their 'brave new world'?

You can ask them to add your comments at the appropriate place in your records, e.g. that you disagree with the medical opinion and your reasons why.

For those in the UK, more information regarding the legal aspects of personal data storage, including the changes since 2018, can be found via this site: https://ico.org.uk/ Edit: This includes how to complain if you are not satisfied with the data holder's action to your request(s)

I've come across a number of posts that mention the problems patients have with incorrect medical records, so thought it would be good to have a thread on how we can deal with this. In the UK we actually do have more rights to get action taken on correcting our personal data, including our...

For this reason I 'liked' Neil's original post. Along with others, I have expressed my concern with his article but I very much appreciate Neil joining the forum and engaging with us.

I love your way with words!

If this is exploratory research, wouldn't an online survey with 'free text' boxes that can be filled in to elaborate as necessary, be an inexpensive way to generate a broader understanding of the issues? Many people with M.E. can't manage phone calls (although some do prefer this over typing).