Children face long waits for neuro-divergence diagnosis

Martin Shipton

Children living in Cardiff and the Vale of Glamorgan are having to wait nearly three and a half years to access a much-heralded neurodevelopmental programme, a Freedom of Information Act disclosure has revealed.

Asked to state in weeks how long the three children waiting the longest time to be seen had been waiting, Cardiff and Vale University Health Board responded: “178 weeks, 177 weeks and 177 weeks.”

Asked to state the current   waiting list time in weeks for children on the “neurodevelopmental pathway”, the board stated: “The current longest wait is 178 weeks – this therefore reflects the current waiting list time.”

Waiting list

Some 3,873 children and young people aged up to 17 years were said to be on the waiting list for the neurodevelopmental assessment service.”

A parent who asked not to be named said: “This is a lot worse than the ‘average of 69 weeks’ line they shared in a previous FOI. Clearly they need to take action to reduce waiting times.”

An earlier FoI disclosure showed that 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.

ADHD

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 at that time 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 is 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 funding

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.”

Increased demand

The situation is common across Wales. Earlier this year Dr Nick Lyons is the Executive Medical Director at Betsi Cadwaladr University Health Board (BCUHB).told ITV Wales: “We in the health board here in North Wales are experiencing a massive increase in demand, the same as many other health care organisations across the UK and indeed across Europe. Three or four years ago we would see perhaps 200 new referrals every month. Now we’re seeing 400, a doubling of the demand in the space of only a few years.

“That puts intense pressure on those waiting. Those individuals, their families and their carers, but also on our staff who really want to do the right thing and respond to that demand. It’s incredibly challenging.”

Talking about answering that demand, Dr Lyons said: “First of all, we need to ensure that we prioritise those in most need. And that’s not always easy because we work on the information that we’re given. It’s perhaps working in different ways. I’m working with partners across local authorities in education and with the voluntary sector and also being really clear with individuals, their families, what we can do and what we can’t do.

“And at times handing patients back – sharing the load in the care with colleagues in primary and community services.

“It’s really difficult. And I suspect those people who are finding it the most difficult are those who are just waiting, waiting to understand what’s happening and to understand what the plans will be. It is that lack of knowledge, that lack of clarity which is particularly hard.”

Dr Lyons addeed: “That’s perhaps where we really need to continue to direct our efforts, ensuring that we communicate well with those people who are on our waiting lists and those people who are being seen.”

Briefing

A research briefing published by the Senedd’s research department in June 2024 stated: “There can be long waiting times to get an assessment for neurodevelopmental conditions. The Welsh Government has set a target that children and young people referred to the all-Wales neurodevelopmental pathway should attend a first assessment appointment within 26 weeks of a referral. There is currently no waiting time policy for adults. The National Institute for Health and Care Excellence (NICE) guidelines for children and young people recommend that a diagnostic assessment should be started within 3 months of a referral to autism services. Whilst NICE guidelines are used in Wales to plan and deliver services, they are not mandatory requirements.

“In 2015, the Welsh Government established an NHS-led Together for Children & Young People (T4CYP) programme with the aim of exploring ways to reshape and improve the emotional wellbeing and mental health services provided for children and young people in Wales. From 2019, work to improve neurodevelopmental services was included as a key focus for the programme. The programme published a Vision for Neurodevelopmental Support & Services, which argued for a whole systems approach which would break down barriers between services for children and young people.

The Welsh Government published an Autistic Spectrum Disorder Strategic Action Plan in 2016, which established new Integrated Autism Services. This was backed by a £13m investment to 2021, and a recurrent payment of £3m a year to support autism services in Wales after 2021.

In September 2018 the Welsh Government made a series of commitments to improve autism services. These included introducing a statutory Code of Practice on the delivery of autism services. This code of practice provides local authorities with information on the level and range of services and support they are expected to provide for autistic people under existing legislation, the Social Services and Wellbeing Act (Wales) 2014 and the National Health Service (Wales) Act 2006.

An evaluation of the code is being undertaken to assess the extent to which the duties in it are being met and to develop recommendations for improvement.