Autism Diagnosis Waiting Times

Debate between Jo Cox and Cheryl Gillan

Tuesday 8th March 2016 Westminster Hall

[Jo Cox]

Absolutely. I bow to my hon. Friend’s experience, expertise and doughty campaigning on this issue, and I could not agree with him more. Tragically, as we know, many thousands of people up and down the country, including children, wait far too long for a diagnosis. For children, on average the current wait is now more than three and a half years.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

I congratulate the hon. Lady on obtaining this debate, which is very important to a large number of people beyond this Chamber. As she knows, I hold the honour of being the elected chair of the all-party group on autism, which has been going for many years now. Diagnosis waiting times are a very important issue for Members of Parliament involved in this area. Does she also hope that we will hear in the Minister’s reply about the importance of NHS England’s collecting and monitoring those diagnosis times for each clinical commissioning group in England? That is important and will mean that we have the data.

[Jo Cox]

I agree entirely. Let us hope that we have an answer on exactly that point from the Minister. I applaud and bow to the right hon. Lady’s commitment and experience on this issue.

While the average waiting time for children is more than three and a half years, many adults receive a diagnosis only five years after concerns first emerge and often two years after seeking professional help. Some 61% of people who responded to a National Autistic Society survey said that they felt relieved to get a diagnosis when it finally came, and more than half—58%—said that it led to their getting new or additional much-needed support. It is of particular concern that children are having to wait so long for a diagnosis. Not only does that place tremendous strain on their whole family, but it means that many children do not receive the early intervention that could have a big impact on their formative years. Indeed, in many cases, children are being locked out of the services available to them, and that support can be life-changing.

Snowflakes is a nursery for children with an autism diagnosis or who are awaiting an autism diagnostic observation schedule assessment. The nursery is run by my sister-in-law, Stacia. One of its children was lucky and got an early diagnosis aged three. He joined Snowflakes and the team worked with him and his family for two years. The dedicated staff managed to help him into a mainstream primary school with support, and he is still in that school and is thriving. Another child came to Snowflakes because her mainstream nursery was unable to cope with her challenging behaviour. She is now on an 18-month waiting list for a diagnosis, but is due to start primary school in just six months’ time. She is making good progress within the specialised setting and is now a role model for other children. Her parents want her to move on to a primary autism resource, but to get a place she needs a diagnosis.

--- Later in debate ---

[Jo Cox]

Absolutely. My hon. Friend again raises a very valid point. We are talking specifically about diagnosis delays, but once someone has a diagnosis, that opens up a whole range of issues that I hope the Minister will address.

[Mrs Gillan]

Further to the intervention by the hon. Member for Huddersfield (Mr Sheerman), one of the key things that the all-party group has been pushing for is better data collection in local areas so that we can more effectively plan and commission services. Nationally, it would mean that we could then ensure that each area is meeting the needs of its local population. Does the hon. Lady agree that it will be interesting to see whether the Minister can tell us what discussions he has had on that and how he intends to take the subject forward appropriately and properly with NHS England?

[Jo Cox]

I agree entirely, and one of the worrying things that became apparent to me in my research for this speech is the growing regional disparity in autism diagnosis waiting times, as well as in the service someone gets once they have a diagnosis. Let us hope that the Minister addresses that point.

My constituent from Batley has given up his job so that his son can attend school every day. As I have said, the problem exists not just in my constituency, but up and down the country, and stories from the NAS highlight that. There is Mel from Watford, whose son waited nine years. Noah, who is four, waited two years for his diagnosis—that is half his life. Meanwhile, data from Public Health England from the latest adult autism strategy show huge regional variation in adult services, with waiting times between referral and first appointment —not even the whole diagnosis journey—in the south-west reaching 95 weeks. In my region of Yorkshire and the Humber, it is 84 weeks. The NICE quality standard on autism is clear: once referred, people should wait no longer than three months before having their first diagnostic appointment. For this to happen, the Government, local authorities and NHS England need to act.

In my own local authority, Kirklees, despite strong leadership and a clear commitment to protect and safeguard vulnerable children and adults, there is an acknowledged crisis in children’s mental health and autism services. Some families have been waiting more than two years for a diagnosis, often longer. I have been encouraging Kirklees and its clinical commissioning groups to clear the backlog and redesign their services, and I am pleased to announce that, starting last Friday, a plan to clear the backlog within 12 months is now being rolled out regionally. This will quadruple the number of diagnoses that can take place in my constituency.