Autism Diagnosis

Norman Lamb Excerpts

Wednesday 13th September 2017 Westminster Hall

[Bambos Charalambous]

The hon. Gentleman makes an excellent point. The NICE guidelines are drawn up by experts who are qualified in their field, and it is only with the collaboration of the experts that the guidelines are set. They are set by experts and should be strictly adhered to.

The delay between referral and diagnosis not only causes more potential harm to children, but leads to untold stress and anxiety for parents and carers who cannot understand their child. If the delay was a matter of weeks, that would be bad enough, but thanks to research done by Dr Laura Crane at Goldsmiths, University of London we now know that in a sample of 1,047 parents who were surveyed, the average delay from referral by a health professional to diagnosis was three and a half years. The delay was more than four years for children diagnosed with Asperger’s syndrome.

The delay is alarming, and I have had difficulty corroborating it with any Government data. That is because data on the length of time from referral to diagnosis of autism are not collected by NHS trusts or clinical commissioning groups, so there is no way of holding the NHS to account for that failing. Since this debate was made public, I have had numerous tweets and emails, as have colleagues, that support the findings of Dr Laura Crane’s study and suggest that the delay in diagnosis is taking years, not months.

[Norman Lamb (North Norfolk) (LD)]

Does the hon. Gentleman agree that NICE needs to look at reviewing its guidance? It is not just about the first appointment. There is a risk that there is gaming of the system. People get their first appointment, but then it is stretched out to three and a half years, as we know. Getting the diagnosis is the critical thing.

[Mr George Howarth (in the Chair)]

Order. Before I call Bambos Charalambous, I should say that those seeking to make a speech in the debate may consider it unnecessary to make an intervention, enabling those who for one reason or another cannot make a speech to make a short intervention. I say that in an advisory sense; it is up to the hon. Gentleman whether he accepts any interventions. As they glance around the Chamber, Members will become aware that it will be difficult to get everyone in.

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[Norman Lamb (North Norfolk) (LD)]

What is so powerful about this debate is that we have heard similar stories from all over the country of what feels like a completely dysfunctional system—stories of families fighting against the system for help for their children. I am always left thinking, “What about those families who don’t have the wherewithal to fight the system and don’t know about contacting their MP for help?” When we get involved, sometimes we can help those families, but what about the families who do not get in touch and do not know how to battle against the system?

One of my constituents is a 14-year-old boy who will wait so long that he will have left school by the time he has a diagnosis. Another is a 12-year-girl who has been pushed from pillar to post between a mental health trust and a community trust because autism diagnosis and mental healthcare are dealt with by two different trusts, for goodness’ sake. I also have a family who paid—with great difficulty—for a diagnosis, but felt dreadful because they knew that many other families are not able to do that.

The need for action is absolutely acute. Why is it so important? We know that early diagnosis and intervention can make a massive difference to life chances. It can give an individual the chance of a happy, good and fulfilled life, and it can significantly improve employment prospects. The employment rate for people with autism is horribly low, yet many have the potential to be great in the workplace, with some help and understanding. A more enlightened approach would save the state a fortune.

When I was the Minister responsible for mental health and autism, I embarked on a process of introducing maximum waiting time standards. We introduced maximum waiting time standards for early intervention in psychosis and for access to psychological therapies. I wanted those standards to be comprehensive across mental health so that there was an equilibrium between mental health and physical health. The need is just as great with autism. As the hon. Member for Stockton South (Dr Williams) said, the Government have an absolute obligation to set a national maximum waiting time standard —not for the first appointment but for achieving a diagnosis—to give families hope. If we do that, we will end the awful postcode lottery and ensure that every child, wherever they live in the country, has the right to an early diagnosis. That would have a massive impact on their life chances and would save the state a fortune.

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[Jackie Doyle-Price]

There is a good argument for being very open about this generally. The self-assessment framework obviously requires local authorities to mark their own homework, and even then we are not seeing the increase in performance that we would like to see. One of my main messages is that we can all learn from good practice elsewhere, and bad practice can also be a learning experience. The more sunlight we can bring to what is happening, the better. I am happy to write to my right hon. Friend on that.

That brings me to the results of the most recent self-assessment exercise, which show that only 22% of local authorities are meeting the recommendation of a maximum three months between referral and first appointment for an assessment. That is obviously not good enough. On the plus side, a further 23% said that they anticipated meeting recommended waiting times by March this year and that they would be able to sustain that, but that is still only half. Although the direction of travel is positive, there is a lot more work to do.

[Norman Lamb]

The Minister may be coming on to this, but will the Government consider introducing a national maximum waiting time standard for diagnosis, rather than for first appointment, so that every child knows that they will get that within a specified time?

[Jackie Doyle-Price]

I fully appreciate the right hon. Gentleman’s point. I am slightly uncomfortable about this, because often it can take a considerable amount of time for a proper assessment between first appointment and diagnosis, but perhaps we need to look at other measures. Generally, the more data we have in this area, the better we can measure performance. Clearly we need to ensure that we have sufficient specialists who are able to undertake these assessments and diagnoses. Sometimes that can be a challenge, so we need to ensure that local commissioners have access to those specialists.