Calls to improve 'failing' support for Birmingham and Solihull children with autism and ADHD

Families in Birmingham and Solihull are struggling to get the care and support for children with autism and ADHD, according to watchdogs. Healthwatch Birmingham spoke to 137 parents or carers of children with the conditions and found a number of issues including lengthy waits for referrals, poor communication and a lack of support both before and after diagnosis.

The group is calling for improvements in the assessment and diagnosis process, increased training for professionals referring children and young people for assessments and more support for families and children. A spokesperson for NHS Birmingham and Solihull said there are "no quick fixes" to issues but added the organisation is committed to making significant changes needed.

Solihull resident Audrey Reynolds experienced a number of delays in getting her 14-year-old son Olly assessed while he has also had difficulties in how his school's disciplined him for perceived 'bad behaviour. She said: "He's high functioning autistic with ADHD and they've also diagnosed him as having tourettes.

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"He's always had problems with adults. He is very shy of adults and has difficulty being friendly, making eye contact but because he's high functioning a lot of people didn't realise so he was always considered a miserable child. For us that was horrible as we knew he wasn't a miserable child.

"The primary school SEN Co-ordinator (SENCO) was supportive and in 2021, eventually, we put in for an autism assessment. We received a letter saying they'd received the referral but it may be some time and we'd just have to wait. We waited for eight months and I thought, he is going into secondary school and I'd rather he went in with a diagnosis than just me saying he is autistic.

"So we paid privately and used a company called the Autism Service. At Secondary school, the SENCO pushed for Olly to be assessed for ADHD." Further delays were experienced in getting the assessment before he was finally diagnosed.

Meanwhile, especially when his medication was unavailable, he would find himself getting detentions and threatened with suspension when he was hyper in the classroom. She said: "He can't help the way he behaves but the difficulty is they can't have someone in the classroom chatting, making noises, because they're trying to teach a lesson.

"I do understand and sympathise with the teachers but giving detentions isn't the right thing to do. It's so frustrating. I feel there should be an alternative disciplinary process for children with ADHD and Autism because their behaviours are never going to be fully in line with how they expect a pupil to behave at school."

She said there is a lack of information too, adding: "You only find out things through talking to people, not because anyone in the industry tells you. You really are on your own. But I've become so used to that it doens't shock me any more. I'm very supportive of the NHS, there just isn't the money there to support this matter."

Richard Burden, Chair, Healthwatch Birmingham, said: "As a society we have a responsibility to ensure that every child has the support they need. Our report shows that we are failing in that responsibility. This is put in stark relief by one of the parents who shared their views with us, who felt the long delay in getting her child referred and assessed was “robbing” her of the chance to enjoy her secondary school years.

"Issues around shortages of the staff needed to meet the ever increasing demand for neurodiversity assessments that lie at the core of these delays cannot be resolved in Birmingham alone. We call on the new government to identify and take the immediate and long-term action necessary.

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"But, as many parents told us, there are also things that can be done locally. There must be a change of approach from one that is diagnosis-led to one which focuses on the needs of those seeking help.

"Care and support must be offered in a timely way, whether families have received a diagnosis or not. Local services have told us they understand this, but must now translate that understanding into improving practical support."

A spokesperson for NHS Birmingham and Solihull said: "We would like to thank Healthwatch Birmingham for their work gathering this important feedback. We understand how frustrating a lengthy wait can be for parents and children alike and in recent years, the numbers of children and adults referred for assessment for autism and ADHD has grown significantly.

"Put simply, there are now many more people referred each month than there are assessment appointments while funding remains largely the same. The lengthy waiting list is unacceptable and we know that we must, as a health and care system, think and organise ourselves differently to ensure that children and young people get quicker access to the support they need.

"There are no quick fixes. We are committed to making significant changes to ensure that the needs of children and young people are understood so that those children and young people who will benefit from a diagnosis are able to access it. We will listen to those who use our services to help us identify the changes we should make."