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Tuesday 25th October 2016

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.


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