This is a guest blog post by colleagues in Sheffield produced for the School’s Public Mental Health Network. The blog presents lived experience narratives of getting help for self-harm.
Authors: DD, Joe Hulin, Vyv Huddy, Leroy Ivanov, Caroline Mitchell, Phil Oliver, and Ellie Wildbore
Background
Whilst there is overwhelming evidence that self-harm is increasing there are also indications people are not seeking help from mainstream primary or secondary care services at an equivalent rate. The Yorkshire and Humber Mental Health & Suicide Prevention Community of Improvement (Y&H MH&SP CoI) is a network of the region’s key public health leads tasked to deliver programmes to improve public mental health. They were asked to carry out research that would help them develop care pathways and resources to better meet the needs of people who self-harm.
Despite the National Suicide Prevention Advisory Group stressing the importance of Voluntary and Community Sector organisations, there is little information about the experiences and perspectives of people seeking help from these services. This blog describes our user-informed methodological process and some of the themes that emerged.
Research
We took a design for implementation approach where we worked alongside the commissioners in developing the research. We also worked alongside a lay reference panel throughout the project, whose perspectives on the findings are elaborated below.
The early stages of the research were both enlightening and encouraging. Our first task was creating a network of organisations who could advertise the study and support recruitment. We were able to find many Voluntary and Community Sector Enterprises (VSCE) – around 70 – offering support to people who self-harm in our region. This helped us feel more confident we would be able recruit enough people to bring a broad range of detailed stories of the support that had been received. Although we were working to a very short timescale, we conducted interviews with 23 people with lived experience of self-harm. They were adults from a range of ethnic groups, some living in more deprived communities and others less so, who identified as male, female and transgender.
Participants told us they felt well supported, that their involvement in research had been a positive experience and they welcomed an opportunity to share experiences.
Findings
We used thematic analysis to identify important themes in the interviews. In this blog post, we will provide a brief summary of three of the themes. Each will be followed by a reflection from our three reference panel members
Theme 1 – Availability and awareness of appropriate support
This theme described how services needed to be tailored to meeting the individual needs of people who self-harm but acknowledged that services were currently fragmented and difficult to navigate.
Participants told us they lacked awareness of available services both for individuals experiencing self-harm and for those delivering care.
Participants described that they were uncertain about the nature of support that services could offer.
DD’s Perspective on theme 1
I’m DD. I’m 28 and work as a mental health professional. I have flipped my perspective of self-harm from an initial very idiosyncratic understanding of my own experiences – how I used self-harm – to a more rounded understanding of self-harm, seeing it in people I work with.
Reflection on the findings
I struggled a lot with my mental health when I was a student completing my undergraduate degree between 2012-2015. I had self-harmed infrequently as a young teenager, but the pressures of university and living alone compounded them. I used self-harm as a way of feeling more in control of my mental health. A friend was concerned for me and gathered some information on university support. I felt I did not deserve support and that my problems were not as severe as others were. I minimised my own mental health and self-harming behaviours, so when a friend noticed and showed concern, it helped me realise that what I was doing was not normal, and it was serious.
I reached out to one of the resources – I was told I would need to attend an initial group session. Given my low self-worth and anxiety, I did not feel this support was appropriate for me, as someone self-harming. I felt anxious at the thought of attending a group, where everyone knew that the other person was self-harming. I did not attend.
I did not reach out for support again, instead continuing with my self-harming behaviours and trying harder to keep them hidden. I felt there was a lack of appropriate support for people going through mental health difficulties. When studying for my Masters in a different university, I again reached out for support and felt rebuffed when the Doctor told me ‘you’ll need to book another appointment to talk about that’.
These experiences left me wary of support available and I felt exposed and dismissed. For this reason, the findings of our research resonated with my experiences.
Theme 2 – Fostering a sense of community
Individuals felt more comfortable in engaging with VCSE support which gave them a sense of belonging or which had other members with similar shared experiences.
Leroy’s Perspective on theme 2
I’m a volunteer for Canopy Housing and I’m also a Battle Scars (https://www.battle-scars-self-harm.org.uk/) Ambassador.
Reflection on the findings
I have suffered with self-harm for 32 years – I first started talking about self-harm in peer support groups. I found it easier to build trust with the workers there because the survivors have suffered trauma and I could see similarities with their stories.
It didn’t happen overnight; it took years to build trust. Nowadays, I try to spread as much awareness as I can, wherever I go.
I want to get the message out that there is help, that people aren’t alone. I think the peer group support network is vital to people that are struggling. When you’re providing support for people you know they realise that it’s a safe place because they can recognize similarities to your own story.
It helps me to deal with my own problems – there’s always somebody out there who has a different technique or way of coping. The findings of the research are important because they acknowledge the key role that people with lived experience play in supporting others.
Theme 3 – Employment and education
This theme was described as being a facilitator and barrier to accessing support. Whereas it was seen as a positive source of improving self-esteem and mental health, especially when employers were understanding, difficulties could be compounded by employers who displayed little in the way of mental health literacy.
Ellie’s Reflection on theme 3
I’m Ellie, I’m 35 and have many years of lived experience of self-harm. After many years as a “hopeless case” in and out of hospital, I now live in the community and work for the NHS in a lived experience role in mental health research, and teaching at universities around the region.
Reflection on the findings
I have had problems with self-harm for nearly 20 years – at one stage I had over 200 trips to A&E in less than a year.
It was my only way of communicating and dealing with chaos and turmoil that was inside my mind. Over the years I have had my fair share of bad experiences – where support for my self-harm was non-existent or where my self-harm closed other doors to treatments, such as for trauma or my eating disorder.
I now am using these experiences to help others – working in mental health research and education in the NHS and universities. For me, finding meaningful employment was a huge motivating factor and turning point. The findings emphasise that it is vitally important there is an open door for conversations to allow for adjustments at work.
Work is a protective factor for my self-esteem because it provides a purpose and a reason to move forward.
Dissemination
We presented the research at a dissemination event including 70 delegates – mental health practitioners, public health staff, academics, and voluntary sector staff. This event generated 12 recommendations for future work. It was illustrated by a visual scribe from LokiCoki Design & Illustration and a freeze was produced and is available here (link with freeze).
Find out more about the dissemination event and read the report
Graphic credits: LokiCoki