ADHD cases continue to rise

Martin Shipton

The numbers of children and adults in Cardiff and the Vale of Glamorgan awaiting a diagnosis of Attention Deficit Hyperactivity Disorder continue to rise, a freedom of information disclosure has revealed.

In July 2024 there were 740 adults waiting for a diagnostic assessment in Cardiff while for children and young people, the average wait for such an appointment was 69 weeks. Adults were waiting for up to 183 weeks for such an appointment.

An FoI disclosure made in 2023 showed there were 509 adults waiting for an ADHD diagnosis in Cardiff and the Vale, with 1,116 children on the waiting list for ADHD.

The average wait was 56 weeks.

A spokesperson for Cardiff and Vale University Health Board said: “We continue to experience a significant rise in referrals for neurodevelopmental assessment and treatment.

“We have two services that have received finance from the Welsh Government ND Improvement Programme; we have used this to develop new ways of working and to boost existing services to deliver on the increasing numbers of referrals and enquiries that we receive in relation to ADHD and Autism.

“Our new Adult ADHD team are using the QB test as an additional tool in the diagnostic pathway for ADHD, and we are working across the service to find the most effective ways to support people with existing diagnoses.

“Our Integrated Autism Service has developed a triage and fast-track system, which has resulted in quicker initial appointments and a more rapid diagnosis for people who require it. It is hoped that the triage process will reduce waiting times in the long term. The Integrated Autism Service also offers timely access to a comprehensive group and workshop programme for autistic adults and carers.

“We have also developed a new course in our Recovery and Wellbeing College called Understanding Neurodiversity. This online course provides an opportunity to explore the meaning of neurodiversity and the emotional and social experiences of living as a neurodivergent person. We will consider identity, communication and mental health in relation to neurodiversity, and we will also explore the challenges and benefits of being neurodivergent. It gives an opportunity to explore what helps and what doesn’t help neurodivergent people, focusing on emotional wellbeing and self-acceptance.

Increased demand

A Welsh Government spokesperson said: “We are committed to tackling long waiting times and increased demand for services.

“This year, in the most difficult of financial circumstances, we increased funding for frontline NHS services by more than 4% compared to less than 1% in England.

“Each health board has responsibility for the commissioning and delivery of local services. Additionally, they have each received a comprehensive set of recommendations highlighting how they can make further improvements in care and services for residents.

“We will continue to support the health board and all its dedicated NHS staff.”

Medication

In October 2023 Nation.Cymru told how a support worker and part-time music teacher suffering with ADHD was having to consider paying up to £200 a month for medication because of a lack of NHS provision in his part of Wales.

While most people think of ADHD as a condition that affects children and young people, an increasing number of older people are now being found to have it. In fact it is believed that around 5% of children in the UK have ADHD as well as 3-4% of adults. That would mean a total of 2.6m people in the UK with ADHD, comprised of 694,000 children and 1.9m adults.

Rob Young, 41, who works as a support worker and part-time music teacher, lives in Llanharry, Rhondda Cynon Taf, within the area covered by the Cwm Taf Morgannwg University Health Board.

He has the symptoms of ADHD, which include finding it hard to concentrate, feeling restless and struggling to sit still. In his case, it also makes it difficult for him to complete pieces of music that he composes.

He told Nation.Cymru: “I’m going through the ADHD diagnosis, and have been for a few years. Initially I started off privately. I’m trying to integrate with the NHS, and the stuff I’m finding out is just absolutely bonkers about the different health boards in Wales and how it’s operating.

“The misinformation is extraordinary. I was originally on the waiting list for four years and then it was said I wasn’t on it, and I went back to the beginning. They said I couldn’t be on the waiting list because I was involved privately, and now they’ve put me back on again.

“I’ve had to fork out a load of money to get medicated privately.”

‘Shared care agreement’

Mr Young said he’d been told there was something called a “shared care agreement” which Cardiff and Vale health board was part of, but for some reason Cwm Taf Morgannwg wasn’t. He said: “I’m now looking at having to pay up to £200 a month, which I can’t afford, so it looks like I will have to go without medication. If I lived down the road in Cardiff it would be different and I could get it for free.

“I was even told the other week that I’m on a waiting list that is pointless, because there aren’t even any ADHD clinics in this board area.

“Medication is life changing for me. It seems very bizarre that certain parts of the country will offer it, and others won’t. It’s such a mess and I’m at my wit’s end with it. I don’t earn a lot of money really, and it’s frustrating.

“GPs and mental health practitioners are saying opposite things and it’s very confusing. Particularly for somebody with ADHD it’s beyond frustrating – it’s very difficult. I had some real mental health issues recently and I’m really disappointed. I feel so disappointed by the NHS – it’s really bad.”

A spokesperson for Cwm Taf Morgannwg UHB said at the time: “We are unable to comment on the details of Mr Young’s care. We can, however, provide reassurance that when a patient presents with a new diagnosis of ADHD from an independent healthcare provider, the information transfers from the GP to our specialist mental health teams, where the appropriate assessments and decisions on treatment are made.”