Log In
Sunday 27th May 2018

Guidance for patients

5th August 2009

Professor Richard Ashcroft from the Centre for the Study of Incentives in Health, Queen Mary University of London, says what parents of children living with long term conditions want is "clear advice".


Diagnosis of a serious medical condition can be hard to take in at first.

What is needed is reliable information and co-ordinated clinical care and social support.

As a parent of a child recently diagnosed with autism spectrum disorder (ASD), my experience has been that “co-ordination” is not what you get.

Empowering patients to make decisions in the light of their own values and interests is really important but I do not think "non-directiveness" achieves this.

If I ask for advice, I expect it and want to trust the professionals and rely on their experience and judgement.

“Don’t know” is even okay from them but "I can't tell you what I would do, because that would be 'directive'" is not.

Inevitably, parents look for "left-field" solutions to their situation but most do not know what is a good source, and what isn’t.

It means we rely on recommendations from other parents, from people who understand what we face. That is a community that is incredibly useful, welcoming and supportive.

Personal experience is helpful but what we also need is well-trained professionals and well-resourced services that work in a joined-up way.

And better research into helping people with ASD develop and flourish and more support to parents in how to get what is best for their child is also required.


Share this page


There are no comments for this article, be the first to comment!

Post your comment

Only registered users can comment. Fill in your e-mail address for quick registration.

Your email address:

Your comment will be checked by a Healthcare Today moderator before it is published on the site.

Article Information

Title: Guidance for patients
Author: Mark Nicholls
Article Id: 12381
Date Added: 5th Aug 2009


BBC News

Recent Related Articles

Surgery delays leaving patients in pain

Backlog of 'on hold' patients checked at trust

Fatal ward attacks on patients

Energy drinks ban in the UK


Add to scrapbook
Show Comments
Add comment
Find all related articles


Mayden - Innovative cloud-based web development for the healthcare sector
© Mayden Foundation 2018