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‘A life on hold’ – waiting for an NHS adult ADHD assessment in England

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The King’s Fund recently published a report exploring how NHS adult ADHD services gather and use data relating to ADHD assessment and diagnosis. As well as finding substantial variation in how different types of data were recorded and used, we also heard about the extreme pressures services were facing. Long waiting lists were a feature of every service we spoke with, the shortest being a year and the longest more than ten years. Two services had paused new assessments, meaning their waiting lists were stalled. Our research questions didn’t extend to people’s experiences in those areas, yet we were very aware that behind this data were people struggling to access services and unable to get the help they needed.

I know several people on NHS adult ADHD waiting lists, and none of them has an easy story to tell. Lydia agreed to share what it’s like to be on a multi-year waiting list.

I just passed my three-year mark of being on [my local NHS] ADHD waiting list. There’s a triage list that you’re on for a while before you’re accepted on to the main list. It’s been dire – they have only sent one letter in three years. I had to call the other week just to ask if I was still on the list as I felt sure that I’d been kicked off, but there were lots of warnings in the letter about not contacting them to see where you are on the list. It’s very stressful, and my anxiety is bad because of it, scared I’ve missed something and will be kicked off the list.

Due to a lack of shared care arrangements where she lives, Lydia is unable to benefit from Right to Choose services, which might have shortened her wait. Additionally, while three-year waits are difficult for many reasons, the way that basic NHS admin has made waiting more difficult is clear to see. This adds another dimension to what we heard in the research – there was little about support for people on the waiting list. One service told us how they checked the NHS Spine (a digital NHS online service that allows the exchange of information across local and national NHS systems) for address changes when people reach the top of the list in case they had moved in the time they were waiting, but just getting a sense of their wait progress or acknowledgement of their status could ease some people’s anxieties.

Another impact of these long waits is on people’s ability to access support – for example, that could enable them to stay in work. Lydia went to her GP when she suspected ADHD and was referred straight away: ‘I felt elated and like something was going to be positive and good.’ But things went downhill.

Then I was told the waiting list was long, maybe a year, a bit disheartening but fair enough. As time has gone on, I [have become] more aware of what I struggle with. I am becoming increasingly frustrated… because I am literally waiting for someone to confirm what I already know, and there’s a huge element of me not being able to get support until that diagnosis. I feel like my identity as well as my life is on hold. And I’m stuck. I’m not in crisis but I am poorly… It’s impacting [my relationship]… I know the diagnosis won’t fix me, but it will give some credence to when I say I’m struggling at work and why.

In a context where health services are increasingly seen as a crucial part of reducing the welfare bill by supporting people into work, lengthy waits risk undermining these efforts.

Developing a better and more consistent understanding of ADHD data is a crucial first step to improving services. Accurate, consistent and sufficiently comprehensive data is fundamental to understanding the challenges that need to be addressed, adapting to variation and changes within them, and monitoring progress. Getting this right is a mammoth task in the face of varying IT systems, different measurement and assessment tools, and limited staff capacity. But data can only ever tell part of the story, and stories such as Lydia’s also show why it’s so essential to understand the experience of waiting from a human perspective.

The interim report from the independent ADHD taskforce has now been published – https://www.england.nhs.uk/publication/report-of-the-independent-adhd-taskforce/

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