Autism: Diagnosis of Children, Hull

Jim Shannon Excerpts

Monday 5th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

First, I would like to thank you, Mr Speaker, for selecting for the Adjournment debate this evening the important subject of the unacceptable length of time families in Hull are having to wait for a diagnosis of autism for their children. It is an issue I have grown increasingly concerned about over the course of the past year.

I was first contacted in spring 2014 by constituents about how long they were having to wait for a diagnosis. The National Institute of Health and Clinical Excellence produced a report in 2011, “Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum”, which states that

“the autism diagnostic assessment”

should start

“within 3 months of the referral”.

The three-month target has since been reinforced by a NICE quality standard on autism, but the service level agreement set by Hull NHS clinical commissioning group is for children to be assessed within 20 weeks of referral, and what is actually happening is very different: families are waiting for well over 12 months, and even for 18 months, to get the diagnosis.

I am particularly concerned about the role of Hull clinical commissioning group, whose job it is to make sure that health services are available and delivered to the local population in a timely manner. I believe the CCG is failing to do that in relation to diagnosing children with autism. It appears not to have a plan on how to tackle the backlog and is also failing to communicate with parents about how long they will really have to wait for a diagnosis. I hope that tonight the Minister will be able to reassure me and my constituents that he will take action on the growing problem in Hull—and, I believe, in other parts of the country.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to the House for consideration. She has eloquently outlined the position in Hull. Across Northern Ireland, we have had a 67% increase in the number of individuals with autism and we have 1,300 children waiting to be assessed. The problems in Hull are replicated across the whole United Kingdom. One way in which the issue can be highlighted is, of course, through education in schools and hospitals, but the recognition of Dr Cassidy, chief executive of Autism Northern Ireland, in the new year honours list was another step in raising the profile of those with autism across the whole United Kingdom, but especially in Northern Ireland.

[Diana Johnson]

I am grateful to the hon. Gentleman for that intervention, which sets the context very well.

Let me tell the House about the experience of three families in my constituency and what the delays actually mean to families and children in Hull. Jayden was three years old when his family first contacted me. His mum, dad and grandmother were desperate to make sure that Jayden received the help he needed. His parents had tried to arrange an assessment with the autism panel in Hull. Without that diagnosis from the panel, Jayden’s parents could not access the specific local services that he needs. They were told that even if they obtained a private diagnosis from a doctor, it would not be acceptable.

Jayden’s parents have found the whole situation very difficult, and I know that Jayden’s grandmother, Mrs Spivey, has really tried hard to fight for her grandson to get the help he needs. Despite initially being told that it would take 20 weeks for a diagnosis to be made, Jayden’s parents were eventually told that in fact it would take 57 weeks. Jayden is now four years old; he still has no diagnosis and he has no speech. His family wanted him to attend the Early Bird programme, an early intervention scheme, but this is available only to children who have received a diagnosis, and Jayden is still waiting.

Thomas is 11 years old. His parents contacted me in June 2014. They believe that Thomas is on the autistic spectrum and have been trying for several months to obtain support. Thomas is high functioning and the long delay is adding to his anxiety. Thomas was referred to the autism panel in October 2013 and his parents were advised by child and adolescent mental health services that, owing to the severity of his needs, he would be seen within 12 weeks. His parents have now been told that he is on the February 2015 list to start his assessment—15 months since the referral. This is what his parents say:

“Thomas is suffering, he is an intelligent, beautiful little boy whose world is collapsing. He is confused by the behaviours he displays and cannot understand the responses which other people present. He is lonely and desperately in need of support. Likewise we are a family in crisis. We feel that Thomas deserves to know why there is insufficient funding to provide the diagnosis he so desperately needs. A diagnosis would bring him support and access to services which he needs to function.”

Thomas’s parents have had little contact from the CCG. They too were initially told that the waiting time was 20 weeks.

Isaac is three years old, and he suffers from severe social and communication difficulties. His parents requested an assessment for autism/sensory processing disorder He was referred to the autism panel in January 2014. His parents were initially told that he would be assessed within 20 weeks, but they have now been told that it will be Easter 2015 before he is assessed. Isaac’s parents were particularly concerned about applying for schools for him in September without having a formal diagnosis in place.

These families in Hull are clear examples of unacceptable and lengthy delays in a diagnosis of autism causing real stress, hardship and worry to families, as well as to the children themselves who are missing out on services and help.