Postcode lottery in Wales for ADHD sufferers

Martin Shipton

A support worker and part-time music teacher who suffers with Attention Deficit Hyperactivity Disorder (ADHD) says he is having to consider paying up to £200 a month for medication because of a lack of NHS provision in his part of Wales.

Most people think of ADHD as a condition that affects children and young people. But 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 us: “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 is part of, but for some reason Cwm Taf Morgannwg isn’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. KIt’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.”

Mr Young has made a formal complaint to the health board.

A spokesperson for Cwm Taf Morgannwg UHB said: “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.”

Infancy

A Welsh Government spokesperson said: “We are aware that adult ADHD services are in their infancy and at different stages of development across Wales, and are working to improve service provision, access to assessment, pre and post diagnosis support.

“The national adult ADHD Pathway Task & Finish Group are working to address issues around the prescribing of medication, including shared care arrangements with GPs, to develop national standard pathways and to ensure services are consistent across Wales.”

The spokesperson added: “We are working with The National Neurodivergence Team, formerly The National Autism Team, to produce a range of resources for adults with ADHD.

“We are currently piloting an expansion of the 24-hour C.A.L.L helpline to offer support to neurodivergent individuals and their families. This listening line can also help people find more information.”