Page last updated at 04:12 GMT, Wednesday, 5 August 2009 05:12 UK

'Patients want clear advice'

Richard Ashroft
Professor Richard Ashcroft
Centre for the Study of Incentives in Health, Queen Mary University of London

Stressed man
Lots of advice - but no clear guidance

Patients and families seeking help on how to live with long-term conditions such as autism do not always get the clear advice they seek.

In this week's Scrubbing Up, Professor Richard Ashcroft says his personal experience has shown professionals should have the confidence to offer specific guidance.

Many people with autism spectrum disorder (ASD) experience sensory overloads.

Bright lights, loud sounds, or rough materials can be so much more intense for them than for most of us, that they cause intense pain or discomfort.

As a parent of a child recently diagnosed with ASD, I have had a similar experience trying to get good quality information about the condition.

I am big enough to understand that 'I don't know' is sometimes the right answer

Any diagnosis of a serious medical condition or impairment is hard to take in at first.

What you need after that is reliable information, and co-ordinated clinical care and social support.

Co-ordination is not what you get.

'Hints and clues'

Professionals are trained to be "non-directive" when they advise or counsel parents.

In my work, I teach current future doctors and lawyers about medical ethics and law. I teach them about informed consent.

I think empowering patients to make decisions in the light of their own values and interests is really important.

But I don't think "non-directiveness" achieves this.

If I ask for advice, it is advice I want - even if I choose not to take it.

I want to trust the professionals and rely on their experience and judgement.

I am big enough to understand that "I don't know" is sometimes the right answer.

What I don't want is: "I can't tell you what I would do, because that would be 'directive'.".

That leaves me looking for hints and clues when I need clarity.

'Unscientific twaddle'

In this context, it is not a surprise that many parents go looking for "left-field" solutions to their situation - "The Secrets The Professionals Don't Want You to Know" - the magic diet, the secret supplement, the miracle injections.

And this is where the noise becomes unbearable, the signals so hard to pick up.

Your local bookshop is full of appalling books on ASD, packed with unscientific twaddle. The internet multiplies this to the nth degree.

Most of us lack the background to know how to sift the good from the bad.

It can be hard to sort out the good from the bad advice

We rely on charisma, personal plausibility, and recommendations from other parents.

This may be a sad reflection on the quality of science education in schools, or of science reporting in the media.

But if we think that the professionals aren't giving us the whole story for whatever reason (resources?), we have every reason to trust other parents, who have no conflicts of interest.

More than that, parents who are experienced and who have adjusted psychologically to their child's diagnosis can tell us newbies what it is like, what to expect, what to hope for, and how to work the system.

Most of all, it involves us joining a community in which people understand the issues we all face. This community is incredibly useful, and, as I've found, incredibly welcoming and supportive.

Subtle stuff

However, it can be hard to sort out the good from the bad advice.

Personal experience is very important and very persuasive: try this, it worked for my child.

It really matters to be able to sort out when someone's personal experience is going to be helpful to us and when it isn't.

This is subtle stuff on every level - scientifically, socially, ethically.

It is not a surprise that it is so noisy and painful - as if learning that your child has a developmental disorder wasn't enough.

So what do we need?

We need well-trained professionals and well-resourced services, that work in a joined-up way and who communicate effectively, better research into the best ways to help people with ASD develop and flourish - and more support to parents in how to appraise what works and how to get it for your child.

That way, we all get to hear the clear signals, and tune out the painful - and sometimes dangerous - noise.

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