Search results

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).

I really, really dislike this article. It's definitely not the only one I've read in the MEA's magazine that keeps me from being a member (I was a member for 12 months some time ago and decided not to renew). I don't see why the MEA cannot have a set of guidelines which all their published...

I came across this guidance. It applies to England, but some of the principles contained in it may be useful in other countries: https://www.voiceability.org/uploads/Challenge_Guidance_-_Advice_for_Advocates.pdf Edit: This guidance also gives some advice on Independent Mental Health Adcocacy...

I just thought it would be worth starting a thread for links to resources that can be used in supporting individuals with personal or professional advocacy (as opposed to general M.E. advocacy issues). This could apply to helping individuals obtain appropriate care, benefits, disability...

A more modern but counter example is the film industry's disturbing portrayals of 'Fabricated or Induced Illness' in a child. One film I can think of is 'The Sixth Sense'. I'm not a parent of a child with M.E., so I have no idea if this sort of media promotion is making things worse for them...

Ha ha...when I was reading it I thought, 'Well that's me f***ed!

Yes, what is needed is the appropriate social care assessment and the necessary practical support put in place for the person returning home. How can this 'trial' not end up being confounded by other projects that are increasingly being rolled out by various NHS trusts and local authorities...

They seem completely oblivious to the fact that we have a science curriculum in schools that is compulsory up to age 16 (in England, but devolved countries have a comparable one): https://www.gov.uk/government/publications/national-curriculum-in-england-science-programmes-of-study

From page 3 of the book:

I note the authors use the term 'fair test'. This term was part of the UK National Curriculum in maths and science when I was working in schools 10-15 years ago as a Learning Coach/Learning Support Assistant. It used to really grate on me as it's so unscientific. I emailed my daughter (a...

I was thinking more for creating a public record for members of the public and more neutral journalists, rather than changing these individuals' views. I agree that it's a waste of energy trying to engage in critical debate with certain people, especially those who as you have said, are happy to...

I no longer work with the NIHR as it became evident to me that much (if not all) of the 'patient involvement' was a tick-box and somewhat patronising exercise.

But it may still be useful to quote their words back to them as a public record, even if only to highlight and make their hypocrisy evident.

I have only just realised (via Google) that Iain Chalmers is one of the founders of Cochrane! My copy was signed by him with a thank you message. https://en.wikipedia.org/wiki/Iain_Chalmers