Mental health & sleep priority setting: ‘I felt appreciated for my lived experience’

The Circadian Mental Health Network is a network of experts, including researchers, clinicians and people with lived experience, aiming to drive collaborative research on sleep, circadian rhythms and mental health.

The network has a lived experience advisory group (LEAP) involved throughout. As part of this work, several Network LEAP members also became rotating members of a steering group for a James Lind Alliance Priority Setting Partnership (JLA PSP) exercise.

The aim of the PSP was to get lived experience, patient, carer and clinical perspectives on which unanswered questions on mental health and the body clock were most important to prioritise in research.

It was also a strong example of how to include people with lived experience in all aspects of a PSP exercise.

Alongside the research team, the JLA PSP Steering Group helped gather the information and prioritise the questions.

In today’s blog one of the Network LEAP members reflects on the lived experience involvement in the PSP exercise , including speaking at a conference to launch the top 10 research priorities.

Dylan Perry

I have been a part of the McPin Lived Experience Advisory Panel (LEAP) and JLA PSP steering group  for the Circadian Mental Health Network for nearly two years now (wow that has flown by!).

As part of the network we’ve been putting together the top 10 questions that the public want answered about body clocks (sleep patterns), sleep and mental health.

From the outset, the LEAP meetings have reflected kindness, respect, and excellent communication. Everything was clearly explained, and I always felt included and valued.

I have thoroughly enjoyed the process, and attending the Circadian Mental Health Network Conference in July was particularly incredible, especially as I was speaking on a panel about my experience collaborating on the top 10 questions project.

‘I felt deeply appreciated for my lived experience lens’

As a busy parent of three it is rare that I get the opportunity to travel for work, and I appreciated every moment of peace, quiet and – ironically – uninterrupted sleep!

I flew from Bristol to Edinburgh for the event and had a truly fantastic time, and I felt so deeply appreciated for my lived experience lens and work.

The day started with introductions and two incredible keynote speeches.

The first was by Professor Anna Wirz-Justice on how we might begin to make chronotherapies (a treatment that involves slowly shifting sleep and waking hours) mainstream.

Although it was well above my level academically, it was fascinating and engaging and I left fully supporting the cause to make sure people understand the importance of sleep!

The second keynote speaker was Dr Nicholas Meyer, who talked in depth about how to incorporate sleep and chronotypes (bodies’ natural preferences for sleeping and waking times) into psychiatry in order to improve understanding of patients and people with lived experience of sleep disorders.

This was really powerful, though I would have loved to have heard more about whether any people with lived experience were involved with the project.

The value of including lived experience voices

When we were due to start the panel my own imposter syndrome and nerves kicked in, but I took a deep breath and remembered the points that I wanted to make.

I wanted to impress on the audience the importance of including lived experience voices, and how they can enhance the meaningfulness and value of mental health research.

My heart was beating fast looking at all the faces but I really enjoyed the experience of being on the panel and being asked questions about my work on the PSP.

Afterwards people came and told me that they had really enjoyed what I’d said, and that it had made them reflect on bringing lived experience perspectives into their own work and research projects in the future, which was just amazing to hear.

My desires for future research

As someone whose sleep has been affected by neurodivergence, hormones, mental health challenges and pregnancy, it felt empowering to bring my intersectional voice to the project.

Looking ahead, I’d love to see more research into the links between hormones and sleep as this is an area that affects many people in their lives, through menopause, transgender healthcare, or pregnancy.

I also hope to see more blue sky thinking around societal factors like light exposure and sleep quality, like moving to a 4-day work week or shifting the start and end times of education settings, for example, and a broader societal shift toward valuing rest and its impact on mental health.

The questions I want to see answered

The three questions that are the most important to me, and that I would most like to see answered, are:

1. What is the relationship between the body clock and mental health in neurodivergent individuals, and does body clock disruption worsen mental health in these individuals?

As a person with ADHD and autism, I’ve always wondered about the connection between my mental health, neurodivergence and body clock.

I’ve often struggled to fall asleep and when I do fall asleep it can feel really hard to wake. This can then become a bit of a vicious cycle and it often impacts my mental health.

2. Would it be better for a person’s mental heath to follow their own (natural) rhythms or to follow more typical sleep patterns and/or social patterns?

Again, before I understood my neurodivergence – my ADHD in particular – I would feel the happiest, most productive and most creative when staying up ‘late’ until the early hours of the morning.

Similarly, I would feel groggy and unmotivated in the mornings, and would struggle to be energetic before 11am.

One of the ways I navigated this best was by working in the evenings and working in retail, but this pattern made it difficult to adjust to a traditional 9-5 job, let alone the broader societal ‘rules’ about being ‘lazy’ if you sleep in and ‘irresponsible’ if you stay up late.

It felt more socially acceptable for me to have this sleep/wake pattern when I was a teenager – as I got older and became a parent I have often wondered how I could have sustained that sleep/wake pattern sensibly, but it doesn’t really feel possible.

I would definitely be interested to see more research on this and which side of the coin it would land on.

3. What strategies (including medications) are effective in treating disrupted body clocks co-occurring with mental health issues?

I think a lot of people who struggle with disrupted body clocks would really appreciate having this question answered.

Whether it’s through traditional medication or other forms of treatment, anything that helps people live more balanced lives and supports their mental health would make a huge difference.

For any research in this area to be truly effective, it also needs to come alongside greater awareness within the medical and healthcare fields so that as many people as possible can actually benefit.

It’s also really important to look at how any proposed treatments or medications might interact with existing mental health conditions, or with medications people are already taking.

When someone is dealing with these challenges, the big question on your mind is often ‘what can actually be done about this?’ and that’s why this was such an important top 10 question for me.

See below for the full top 10 priority research questions.

A ‘gold star’ standard of coproduction

I have worked in lived experience and coproduction for six years, and have no problem leaving groups or jobs I find tokenistic or meaningless.

Working with McPin, the Network manager and the JLA advisor, alongside other PSP Steering Group members has shown what I believe to be a ‘gold star’ standard of coproduction in priority setting.

Receiving items before meetings, making sure we could decode jargon and keeping things accessible by being online were hugely beneficial.

It also feels important to mention that being reimbursed for my time means that I feel valued and that I have also added value to the project by bringing my voice.

Being part of the data subgroup was also really interesting as I wouldn’t typically consider myself really good with data. In my day job I work a lot with qualitative data, but it was really useful to see codings and groupings in order to whittle down the list to the top 10.

It’s amazing to think that because of all of the effort and energy that went into creating the top 10 research questions; these will become the foundation of early career researchers’ work. It’s great the evidence is there that the public want these questions answered.

I’m grateful to have worked with such a dedicated, thoughtful and passionate team of people with so much lived and learned experience and I will take this rich learning with me moving forward into other projects.

Top 10 priority questions about the body clock, sleep and mental health

1. Does the interaction between mental health and the body clock vary by age, especially during different life stages?
2. What strategies (including medications) are effective in treating disrupted body clocks co-occurring with mental health issues?
3. What is the relationship between the body clock and mental health in neurodivergent individuals and does body clock disruption worsen mental health in these individuals?
4. What is the relationship between a disrupted body clock and bipolar disorder, or between a disrupted body clock and psychosis? What are the mechanisms involved in this?
5. What societal and/or policy changes can help prevent mental health issues for, and reduce stigma towards, extreme chronotypes?
6. What is the relationship between (peri)menopause, mental health and body clocks?
7. How does mental trauma (e.g., grief) affect the body clock? How can this be managed?
8. Would it be better for a person’s mental health to follow their own (natural) rhythms or to follow more typical sleep patterns and/or social patterns?
9. What is the relationship between seasonal changes, body clocks, mental wellbeing and mental health issues?
10. Can mental health difficulties, such as anxiety or depression, cause disruption of the body clock at a molecular level, or are these driven mainly by behavioural factors?