There is a crisis in the NHS ADHD services; access to support is severely restricted and waiting times from being accepted as a referral to being assessed, diagnosed and treated are very long. Sometimes families are waiting for over two years. In addition to delaying much-needed help, these long waits could make the problems faced by children and their families worse. However, very little is known about what it feels like to be on a waiting list.
At the end of the OPTIMA trial, as part of our data collection, we asked parents to tell us if their child had been assessed and diagnosed since being accepted onto a waiting list. When we spoke to parents, we found that many of them wanted to share their story with us to tell us what it felt like to be waiting for their child to be assessed and diagnosed. We decided to capture these experiences by inviting parents to take part in interviews.
To make sure we captured diverse voices that represented all parents participating in the OPTIMA trial, we invited people who had various backgrounds and came from different locations. In total, 41 parents representing a range of backgrounds and eight of the services supporting OPTIMA took part.
In the interviews, we asked parents about their experiences of being on a waitlist, for example, how the services communicated with them and what sort of support they had received. We also asked about other support that parents sought, such as Facebook groups and local communities. Finally, we asked what support they would like to receive from services and how services could best help them. Of course, we also acknowledged that most parents had waited for a long time to be seen and so we asked how they felt about this and if it had had any impact on family life.
The interviews revealed that 49% of parents we spoke to had not been seen by services, even after waiting for at least a year. From what the parents told us, we noticed patterns, which we grouped into core themes to reflect parent’s experiences.
The themes focussed on parents’ experiences of the communication and support received from services, and what support they would like to receive. Also, the impact that waiting for an assessment had on them and their child, both in terms of mental health but also school and family life. Below is a sample quote illustrating each of the themes.
Theme 1: Communication and support received
“I think it’s you just have to keep on, you just have to keep hounding them. You just have to keep pushing and you just have to keep knocking on that door because it almost feels like if you’re quiet, if you don’t, if you don’t make it difficult, you don’t get anywhere”
Theme 2: Support wanted
“because she’s under the neurodiverse pathway, we’re not gonna see her under the mental health one as well” I was like, “you’re not seeing her under the first one so you’re not doing anything”. Like “help me!”
Theme 3: Impact
“we’ve waited over two years of her education, it is a huge percentage. And in that time, she was just getting further and further behind”.
The OPTIMA team are planning on writing and publishing a paper on these findings. We believe it is important that parents with lived experiences of waiting for their child to receive a diagnosis and support are heard. Also, we hope to add to existing studies showing the impact that long wait lists have on the lives of children and their families. Once the study is published, you will be able to read it on www.optimastudy.co.uk.
