Opinion: ADHD diagnosis ‘limbo’
How the eight-year NHS backlog for ADHD diagnoses is causing women to self-medicate
Chris Sallans is a Senior Lecturer in Social Work at Buckinghamshire New University (BNU), where she has worked since 2020. Chris has a BSc in Sociology, an MA in Applied Social Sciences, a Dip SW and a PGCE, with a specialisms in youth crime and drug and alcohol misuse.
Last month, an investigation by the BBC brought the extent of the NHS’s ADHD (attentional deficit hyperactivity disorder) diagnosis backlog into the spotlight, highlighting the staggering waitlists of up to eight years around the UK.
Photo courtesy BNU
The investigation identified that there are almost 200,000 adults currently on NHS waiting lists for an ADHD screening, with many reporting little or no support in place while they wait.
ADHD is a condition which affects people’s behaviour, making it harder to concentrate and manage time, as well as causing impulsivity and risk taking in some individuals due to decreased levels of the neurotransmitter dopamine. Symptoms of ADHD can be identified at an early age, however recent figures point to more cases being diagnosed in later life due to increased understanding of the complexities of the condition, particularly in women, for whom symptoms present differently to men and boys.
ADHD can have drastic impacts on a person’s life, with many experiencing difficulty in managing their symptoms without support. Many can turn to methods of self-medication, a human behaviour in which an individual uses a substance or any external influence to self-administer treatment for their condition.
With so many adults awaiting the support they need and potentially turning to ‘DIY’ methods of treatment, it begs the question: what is the true impact on those in diagnosis ‘limbo’?
Our research team at Buckinghamshire New University (BNU) has this year completed a qualitative study into the lived experience of women awaiting a formal diagnosis, or who have a psychiatric diagnosis in South Buckinghamshire, and the services available to them. Between January and July this year, the research team conducted five focus groups with 16 women who have formal or informal ADHD diagnoses and 10 semi-structured interviews with health and social care professionals from the police, social work, psychotherapy, public health and addictions, paramedicine, SPLD screening, counselling and mentoring, district nursing, law and education.
The research presented some preliminary findings:
- Many of the women in the study spoke of the ‘limbo’ they were in, and the majority discussed difficulty in regulating their emotions, eating patterns and experiencing ‘overwhelm’ and ‘exhaustion’ trying to manage symptoms and appear ‘normal’ on a day-to-day basis
- Delays in diagnosis often led to prolonged periods of unmanaged symptoms and self-medication, including the use of illicit drugs, types of food including high-sugar foods, risk-taking behaviours and use of prescribed medications
- Participants expressed dissatisfaction with the level of support available, both from health and social care providers and educational institutions
- Many older women felt let down by the education system, which they believe failed to recognise and accommodate their needs, impacting on their life chances.
- It’s evident that longer waiting lists can be extremely detrimental to all people waiting for a formal diagnosis, without the support services in place
Our research and the investigation by the BBC are important steps in shedding light on the experiences of women with ADHD, particularly those awaiting a formal diagnosis who self-medicate. It is evident that longer waiting lists can be extremely detrimental to all people waiting for a formal diagnosis, without support in place.
While our next steps will be to further analyse the data to deepen the understanding of emerging themes and to develop recommendations for improving ADHD support services and professional training, the preliminary findings of this research underscore the need for improved ADHD services and support for women.
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