Long wait for Asperger’s and Autism diagnosis

Rachel Pocock from Haywards Heath has been waiting since December for her daughter, Maisie, 7, to be assessed.

There are indications that she may have Asperger’s but until a diagnosis is made, Maisie cannot receive the specialist help that children with this condition need.

Rachel said: “In January, we received a letter advising us that the assessment is unlikely to take place for six months due to the waiting list.

“In March we were advised that Maisie is 14th on the waiting list and is unlikely to be seen until September at the earliest.”

Sussex Community NHS Trust’s Mid Sussex child development team takes the lead for autism assessment and diagnosis and Rachel understands that the wait is so long because a child psychologist carrying out the assessments only works part-time.

Maisie’s father Lee said: “All this has an impact on home life because without a diagnosis we as parents can’t resolve Maisie’s problems. We don’t know what we are dealing with. None of us know if we are tackling her issues in the right way.”

Rachel added: “Maisie does have a learning mentor at school now but when Maisie started school in reception we didn’t know if her difficulty making friends and understanding play was caused by bullying.

“When you go to the school nurse or doctor and you are referred for diagnosis, there is a massive time lapse before you get seen and assessed - it all just takes so long.”

Another parent from Haywards Heath, who did not want to be named, told us: “My son went through multitudes of appointments to find out if he had ‘Asperger’s’ and after that, there was no counselling or respite help.

“My son was given the label ‘Asperger’s’ for limited special needs help at school but it was just a label. He couldn’t cope with school and eventually we took him out and I educated him at home. The onus was on us to find an alternative school and the only one that was suitable was in Bath and we didn’t want him to board.”

A spokesman for Sussex Community NHS Trust said: “An assessment of a child with developmental and special needs and where an autism spectrum disorder is suspected, is a thorough and detailed process involving the child, their parents, their school and other health and care professionals.

Our assessments will take approximately 15 hours of professional time to complete. This is in line with current National Institute for Health and Clinical Excellence guidance in this area.

Average waiting times for diagnostic assessment nationally are between six to 12 months. In Mid Sussex our average waiting times are between six to seven months.

“Due to patient confidentiality we cannot discuss patients who are currently being assessed. But we urge any patients to talk to us directly about any concerns they may have.”

The spokesman did not explain why the wait is “six to seven months” in this area but the governing body of the Horsham and Mid Sussex Clinical Commissioning Group was told at its last meeting on March 4 that staff recruitment and retention continues to be a problem in mental health service provision.

Becca Randell, the commissioner for Child and Adolescent mental Health Services (CAMHS) locally has been gathering feedback from parents in focus group sessions to look at how mental health services generally can be improved for this age group.

She told the Clinical Commissioning Group’s governing body on March 4 that services were “in a bit of a pickle”, adding: “Parents felt there was a lack of information post referral and no information on what diagnosis means or what happens next, with a flurry of information often followed by long periods of silences.”

Becca has been examining how mental health services in general for young people can be improved so that parents and GPs have clearer guidance on referral, diagnosis and the help available.

In the meantime, the wait goes on for Maisie and other children like her.