St Albans children with suspected autism face 800-strong waiting list for assessment
PUBLISHED: 07:00 05 September 2019
Children who need an autism assessment in St Albans face years on an 800-strong waiting list.
A Freedom of Information (FOI) request submitted to the Hertfordshire Community NHS Trust (HCT) has revealed that as of August 20 this year, there were 794 children waiting for a Communication Disorder Assessment Clinic (CDAC) appointment with the West Herts Community Paediatrician team, and only six are seen each week.
A number of tests can be given during a CDAC appointment, including an Autistic Spectrum Disorder (ASD) assessment. This test looks at how a child with suspected autism interacts, plays, and has developed. It also takes into account reports from GPs and schools.
Before a formal diagnosis, children with autism can struggle to get the support they need.
For example, Andrea Wright suspects her five-year-old son Cruz has autism because he is scared by loud noises, has speech problems, and is so averse to certain smells they can make him physically sick.
At first, she put these problems down to ongoing health issues - Cruz had repeated and severe tonsillitis from five months old.
Andrea said: "He wasn't able to swallow properly because he was in pain, his tonsils were so big."
His health problems cleared up after Cruz had his tonsils out at two and a half years old, but the youngster still refuses to eat the majority of food.
Bread and mashed up vegetables, which Andrea disguises as 'bolognaise' sauce, is one of the only meals he can stomach.
Cruz was referred to Addenbrooke's Hospital for a feeding care programme, but the team there cannot treat his diagnosis and he was directed back to the CDAC waiting list.
A Cambridge University Hospitals spokesperson said: "We can confirm the patient was seen at Addenbrooke's Hospital in 2018 and was diagnosed with a condition which we are unable to offer treatment for.
"He was therefore referred back to Watford Hospital and is no longer being seen at Addenbrooke's."
After a year on the waiting list, Cruz is about number 400 in the queue, although there is constant reprioritisation so that may have changed since publication.
Since Cruz joined the list in September 2018, only 210 children have been assessed at the St Albans Children's Centre.
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That is about two per week and ten per month on average, removing partial weeks and months.
This mirrors other centres in the West Herts Community Paediatrician jurisdiction - for example, on average one child per week was assessed at the Marlowes' Health And Wellbeing Centre and three children per week at the Peace Children's Centre.
Across all three sites, six children are assessed per week, and 24 per month, on average.
Forty-five-year-old Andrea said: "I can't begin to tell you how this feels, and he has come so far but we are at breaking point because of what is going on and that is what I want to tell people.
"This has all impacted greatly on my mental health because it is so stressful."
Andrea has been diagnosed with bipolar disorder and PTSD: "I am not ashamed of it and I have been very proactive in saying that I have mental health problems - I am honest with my story.
"I have to keep fighting for Cruz and I need my health to be strong for him. I am on my own and he is my angel. We have a great time, him and I.
"I found it tough being a single mum at first, it came unexpectedly as his father isn't involved, but I will do anything for him.
"We have a great life, he is a very happy child and we have an amazing support network."
She said How Wood Primary School and Nursery, along with charity ADD-vance, have been very supportive.
ADD-vance is a Herts charity which provides consultancy, coaching, and support to families of children with autism, ADHD, or related disorders.
Andrea added: "It doesn't matter to me what diagnosis Cruz is given, the only reason I want the diagnosis is so he gets the best support and I don't do anything to make it worse."
There are other ways to receive a diagnosis of autism, but the CDAC clinic is used in more complex cases.
A spokesperson from HCT said: "HCT are working with system partners to improve the waiting times for Autistic Spectrum Disorder (ASD) assessments.
"Funding has been made available to support this initiative. HCT is unable to comment on individual cases due to confidentiality."