Diana Johnson MP: Autism needs to be diagnosed faster

Hull North MP Diana Johnson writes about her parliamentary debate on 'Diagnosis of children on the autism spectrum' Children in Hull are having to wait too long to receive a diagnosis of autism. Children like three year old Jayden, who has no speech, was initially told that it would take 20 weeks for a diagnosis, but was eventually told that it would actually take 57 weeks. Or eleven year old Thomas who was first referred in October 2013. His assessment will start in February 2015 – 15 months since the initial referral. His parents comment: “Thomas is suffering, he is an intelligent, beautiful little boy whose world is collapsing. A diagnosis would bring him support and access to services which he needs to function”. The National Institute of Health and Clinical Excellence produced a report in 2011 which said that an assessment should start within three months of referral. This three month target has since been reinforced by a NICE Quality Standard on autism. The service level agreement set by Hull NHS Clinical Commissioning Group is for children to be assessed within 20 weeks of referral. But families in Hull are waiting well beyond twelve months. Unacceptable and lengthy delays in diagnosing autism are causing stress, hardship and worry to families. Children are missing out on services and help. We all know that the sooner these children get help the better the outcomes are for them. A survey conducted in 2011 by the National Autistic Society found that 48% of parents have had to wait over a year for their child to get appropriate support, with more than a quarter saying they have had to wait over two years. In the same survey, 69% of parents said that their child’s educational progress has suffered because of a lack of timely support, and three quarters said that a lack of support has harmed their child’s social and communication skills But what can be done? Quite a lot. We need to look at best practice around the UK. Health services in Sheffield have achieved a significant reduction in waiting times by developing a dedicated diagnostic team, and ensuring that staff are not trying to do other jobs. There is a national shortage of professionals in this area and I think that the Department of Health needs to take steps to ensure that sufficient numbers of clinicians are being trained. I also want CCGs to better communicate with parents so that expectations are realistic and based on honest information about timescales. I am very disappointed to hear that the Hull autism service are still sending out letters to parents claiming that the waiting time for an assessment is 20 weeks The Government recently set up a taskforce on children’s mental health and well-being. I think that it should look at the specific challenges facing children with suspected autism accessing a diagnostic assessment. Finally in order to allow parents and stakeholders to hold local services to account, it is important that data on waiting times for the diagnosis of autism is routinely collected and published.