Parents frustrated after autism, ADHD and neurodiverse diagnosis waiting times double in north Wales

Victoria Rathbone is becoming increasingly frustrated and upset as she waits for her young son William, who is four, to be put on the pathway that will get him the help she says he needs.

She says she was told in 2022 he was near the top of the waiting list but four months into 2024 she is still waiting and it has left her worried and confused.

Her youngest daughter Eva is also on the pathway.

It is all a very different experience, she says, to that of her eight year old daughter Grace who has complex needs and who she says was diagnosed in around 14 months with help and support all the way through.

The mother of four from Kinmel Bay said the difference now is stark and she is worried for her own children and other parents battling to get their children help.

She said: "Life can be difficult on a daily basis. It's quite stressful. And we found this time around with my youngest two that things are very different to what they were when my oldest was diagnosed."Obviously we have a shortage of medical professionals, I think at the moment in the NHS. So we haven't really been receiving any intervention as such and so it's difficult for support."

Victoria added: "I think we need a new system. The current system is broken. I think we need early intervention. I think we need intervention whilst on the waiting list for an assessment. I think we need more professionals involved in that intervention and I think we ideally should be looking at a diagnosis within the very most 18 months and I think particularly support for the parents who are going through this, particularly first time parents."

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Dr Nick Lyons is the Executive Medical Director at Betsi Cadwaladr University Health Board (BCUHB).

He understands the challenges parents are having to deal with in the face of a huge increase in demand nationally.

He said: "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 added: "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, you know, 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 continued: "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."

However, Dr Lyons does not feel the issue comes down to a lack of funding.

He explained: "Of course if we are offered more money, we could say, thank you very much, but I don't think this is actually a matter of money. This is a matter of finding the right skilled staff who when this challenge is nationwide, it's really difficult to recruit. It's encouraging people to work differently and that takes time. And it's also working to ensure that the expectations of people are fulfilled."So yes, money is a part, but perhaps a small part of the current challenge." Asked why there had been such a growth in demand for services, Dr Lyons said the answer is not completely clear.

He explained: "There's been much debate in the professional journals, much discussion at conferences, loads of ideas and proposals put forward as to why it might be. And there's been no clear answer that convinces me we fully understand it. I suspect it's a combination of factors, but particularly profound is that increase between the numbers we saw before the pandemic and the numbers that we're seeing after."I think we'd all recognize that society has changed in a way perhaps that we're only just beginning to understand."

Meanwhile, the Welsh Government say they are committed to tackling long waiting times and increased demand for neurodivergence services.

They said a total of £6 million has been invested this year to further improve the services and a neurodivergent improvement programme has been set up to improve access to pre-diagnostic support for people with autism, ADHD and other neurodivergent conditions.

A spokesperson said: "The NHS Executive has reviewed children's neurodevelopment services-each health board has a comprehensive set of recommendations highlighting how they can make further improvements."

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