Autism

Baroness Browning Excerpts

Tuesday 22nd March 2016 Grand Committee

Asked by

[Baroness Browning]

To ask Her Majesty’s Government what steps they are taking to improve the speed and quality of autism diagnoses in the United Kingdom.

[Baroness Browning (Con)]

My Lords, I refer to the register of my interests as a vice-president of the National Autistic Society, and to an outside interest in leadership training in the NHS. I should also declare that I am patron of Research Autism and the Autism Diagnostic Research Centre in Southampton.

Why is there a need to improve both the speed and the quality of a diagnosis in autism? It seems to me a pretty straightforward question, and that the answer is rather obvious. Speed is very important, particularly when one looks at some of the more complex cases, but in order for that to be processed and for someone to be referred to the right person, it requires sufficient people to be trained both for children and adult diagnosis. A recent case was brought to my attention of a 50 year-old man in full-time employment in Kent. It has taken two years for him to receive a diagnosis.

The latest Public Health England waiting times show that from the first referral to the first appointment—in other words, not the whole process of diagnosis but that very first step—takes up to 95 weeks in the south-west and, in Yorkshire and Humber, 84 weeks. We are looking at a postcode lottery. I am aware that in some areas the situation is better than that, but around the country we see people waiting for far too long. The quality of the diagnosis is important, too, as well as what happens after it is given. Autism, as we know, is a lifelong condition, and the diagnosis is the passport to an improved quality of life, including support not just for the autistic person but for parents, siblings and carers.

There are still too many problems at each stage of what the NHS refers to as the “pathways”. It is terminology that I absolutely hate but I am going to have to use it today, because I think everyone will know what I mean by it—that is, the various steps taken from the time that someone presents, or someone is noticed or a problem arises and somebody along the line says, “Well, could this be autism?”. The National Autistic Society has done a lot of work on this, and its recent assessment is that it is very important that every area has a clear route, from raising concerns to being referred for a diagnosis, having the assessment and then getting the care and support that necessarily must come afterwards.

Sometimes people get a referral only after visiting their GP multiple times. This can be down to poor GP awareness as well as people being wrongly diagnosed with other conditions such as anxiety, depression or obsessive-compulsive disorder. There is a need for GP training and for GPs to become more established as the important gatekeepers that they are. I am pleased to welcome the initiative of the Royal College of General Practitioners. Two years ago it set up a clinical priority group under the chairmanship of Dr Carole Buckley, who has been doing some excellent work around the country. We need GPs to be aware enough to make an appropriate referral in a timely way, together with social workers, teachers, educational psychologists and in fact many others—not just professionals but people who have an awareness and understanding of autism, who can say, “This could be autism”. If that is the case, it needs the appropriate referral.

That is particularly so now with girls as well as boys. Ten or 20 years ago, girls were reckoned to be about one in 10 of people diagnosed with autism. That perception has changed quite dramatically in the last five to 10 years. We now know that there are a lot more girls on the autistic spectrum but they often present differently from boys and therefore diagnosing them requires specialist knowledge. It is a communication disorder, of course, which means that very often the way in which girls communicate can be different from the way that boys communicate. That can raise challenges in terms of the diagnosis.

Across the country there is wide variation in the length of time that people wait for an assessment after being referred. NICE guidance says that it should be no longer than three months, which the Government have repeatedly stated that clinical commissioning groups should be meeting. They are not meeting it. I say to the Minister that the Government need to be far more proactive with clinical commissioning groups. Adult data show that the average in England is 13 weeks while in areas of the south-west, as I said, it is as long as 95 weeks. This is from the 2014 local authority self-assessment on the Autism Act.

It would be very helpful if the Government could collect diagnosis waiting times for adults and children centrally and hold CCGs to account on meeting the NICE targets. One of the other problems about these waiting times is that there is no true picture of the number of people being diagnosed or the number who are waiting, which leads to a lack of provision to cope with the numbers and the reality. It would be very helpful across the piece for health, education and social services to have a much better feel for how many people there are, where they are and what the timescale is that they are working to.

Once people get a diagnosis, too many report that they are not getting the support they need, including in those essential areas of mental health, speech and language therapy and social care. It is of course included in the Autism Act’s statutory guidance for adults, but autistic people tell us that, far too often, this is not happening. What will the Government do to make sure that NHS England’s work under the Mental Health Task Force to create a care pathway for autism will include post-diagnostic support for all autistic people and will hold areas to account?

There is another area which the Government need to address urgently. Part of the reason is, I believe, the lack of leadership within NHS England on autism. Currently, the lead for autism is the clinical lead for learning disability and autism. It is quite true that there are people who have a dual diagnosis, but the lead sits within the transforming care team, which of course leads important work on closing inappropriate in-patient units for people with complex needs. But there is a strong case for a national clinical director for autism to drive progress within NHS England across the autism spectrum. Clinical directors exist for other conditions including learning disability, dementia and mental health, and we have seen great strides forward in areas where there is a dedicated clinical lead. I ask my noble friend again today: will the Minister support the call for NHS England to develop leadership on autism, because that is where the driver is and where it could so improve the situation?

I also draw my noble friend’s attention to the question, which I have mentioned already, of the implementation of the Autism Act 2009. When I was in another place, I was delighted to have the opportunity to be part of the team that took the Autism Bill through to become an Act. Apart from mental health, it is the only medical condition which has its own Act of Parliament. That should be a clear indicator of how important Parliament considers this condition.

However, I say to my noble friend that I am concerned. Despite the fact that it was written into Section 3 of the Autism Act that local authorities and NHS bodies have a duty to act under guidance, I get the impression that that part of the Act is not being implemented as robustly as it should be by the Minister.

I remind people of what that very important part of the Act says. It says that,

“an NHS body is to be treated as if it were a local authority within the meaning of”,

the Local Authority Social Services Act 1970, and that,

“the functions of an NHS body”,

mean that the Minister can call it to account if is not implementing guidance as it should. It gives statutory backing and power to the Minister—on NHS bodies and of course on local authorities—to make sure that this guidance is being properly implemented.

My noble friend may want to write to me on this. I would like to know just how many times the Minister has exercised Section 3 of the Autism Act, since it was put on the statute book, with either an NHS body or a local authority. It seems that this should be used by the Minister to drive forward the very issue that we are talking about, among other parts of guidance—to make sure that people not only get their diagnosis in a timely way and that it is an effective diagnosis in terms of its quality, and that the follow-up on the services identified by the statutory guidance for the Autism Act is implemented as well.

I am very grateful to colleagues across the House who have attended this debate today and I hope that when she sums up, my noble friend will be able to reassure us.