By Dr Lindsay H Dewa, Research Associate, NIHR Imperial Patient Safety Translational Research Centre
“Mental pain is less dramatic than physical pain, but it is more common and also more hard to bear. The frequent attempt to conceal mental pain increases the burden: it is easier to say “My tooth is aching” than to say “My heart is broken”.
C.S. Lewis
Two out of every three people will experience a mental health problem at some point in their lives. Many develop these disorders before age 25, but most go undetected or undiagnosed.
Those that are identified in this age group are usually referred to Children and Young People’s Mental Health Services (CAMHS) for support and treatment. Similar to other healthcare services, there are often issues for young people transitioning to adult mental health services (AMHS). Referrals can encounter delays in care, data can be lost and there is sometimes an inability to recognise the increasing severity of some patient’s conditions. This is combined with the fact that young people are often already experiencing stressful life events such as moving away from home, starting new employment or relationships.
Identifying issues
We’ve all likely experienced moments of anxiety or a lull in mood, however fleeting. I remember having a panic attack during one of my exams at university because I thought I was going to fail. Moments such as these are probably more common than we realise. But when these changes in mood, thought patterns or behaviours are severe or prolonged, meaning our mental health has deteriorated, that’s when the situation becomes more concerning.
Some young people talk about how they‘re feeling, whether that’s to friends, family or healthcare professionals; face-to-face, on the phone or online. Others conceal their feelings but may show changes in their mood, behaviour or thinking. Either way, it’s possible to identify signs of deterioration and help prevent their situation from worsening.
But sometimes the signs aren’t obvious and people don’t realise they’re experiencing a problem. In fact, a third of young people with mental health difficulties don’t engage with mental health services. This leads to late diagnosis or people continuing their lives without medical support, which can worsen their mental illness. The reason for this lack of engagement may be the fear of being stigmatised, concerns over what the doctor may say about them, or issues with accessing care.
Indeed, many face a substantial delay in accessing mental health treatment in the UK; some diagnosed young mental health patients are waiting up to 18 months to receive care because of underfunded NHS mental health services. Though this is not the norm, some young people are still waiting too long for treatment. During this wait, their mental health can further deteriorate before they receive help. Unfortunately, when left untreated, the potential outcomes can be severe, including self-harm, suicidal behaviour or even suicide.
Turning to digital tools
As a first step towards progress in mental health, we need to be looking at ways to support prevention and early detection, and subsequent better access to treatment. Digital tools such as online services could be a solution to the growing demand for mental healthcare and an alternative to more traditional services, which could help early detection or self-management.
That’s why increasing access to such digital health services, research and funding is now a priority. The UK government, for example, is investing £67.7 million towards digital technology interventions in the NHS. Yet there is still a concern that technologies are being developed without substantial evidence or input from the people who will ultimately benefit from them – patients, carers and the public.
That’s where my current work with the NIHR Imperial Patient Safety Translational Research Centre (PSTRC) comes in. My research is focused on exploring young people’s perceptions of using technology to detect deteriorating mental health. The aim is that this will inform future pilot studies of new digital tools.
For one research project, I worked in partnership with young people with experience of past mental health difficulties, from start to finish. They were involved in the design, ethics, management, data collection, analysis and dissemination stages of the study. We trained them to be co-researchers, to conduct the interviews and code transcripts, and they were integral to decision-making throughout the project.
Promising results
We subsequently co-produced a thematic map of the main findings and our results are promising. They show that young people find technology such as mobile apps and wearables both acceptable and feasible to monitor changes in young people’s thought processes, mood and behaviour to detect deterioration. However, in line with other people’s work, issues of viability, safeguarding and patient preference need to be considered before implementation.
Evidence is therefore building that digital interventions may offer an alternative solution to more traditional services. These could help detect deteriorating mental health and may relieve the strain on existing NHS mental health services. But we need greater investment and research to justify and validate signposting to these technological services, to ensure young people access help sooner and enjoy a better quality of life.
Want to find out more about this research? Read Katy Pickles’ perspective on being involved in a mental health research project as a young person.
Dr Lindsay Dewa is a research associate in mental health at the Institute of Global Health Innovation.