Everyone deserves access to safe and affirming care. The broader literature and anecdotal evidence suggest that safe and affirming care is often absent when it comes to self-harm. In 2020 we (Bathsheba, Courtney, and Veronica) co-founded Make Space, a user-led group which seeks to facilitate generous and open conversations around self-harm. In 2022 Make Space was commissioned by Torbay Public Health to explore people’s experiences of self-harm, and the care available to them in the local area.
Torbay is a coastal borough in South Devon with a suicide rate higher than the national average. While much work has been done around suicide in the area, there was a desire to learn more about experiences of self-harm. Therefore, this project aimed to learn more about the experience of self-harm and the support available – led by people with experience of self-harm. Our focus was on what care was available, where there were gaps in care, and what good care might look and feel like. We talked with people with experience of self-harm, and people who supported those who self-harm in a personal or professional capacity. We carried out interviews, focus groups, and received written testimony. To explore the broader context of our findings and see whether there was anything ‘unique’ about the Torbay situation, we reviewed the academic literature. We spoke to national charities working around self-harm or supporting those who do. Our findings were recently published, in both short form and as a 70 page full report – both can be found here.
Experiences of self-harm
Participants had varying experiences of self-harm. Each person had a different experience of self-harm, including histories, methods, and meanings. Self-harm often intersected with other experiences, but people felt it was rarely understood or responded to within the broader context of their lives. For some, self-harm was linked to suicide. For other individuals, it was an act directed toward preserving life, and many were ambivalent about the relationship between self-harm and suicide. While there was little consensus on the experience of self-harm, the hopes for care were almost unanimous. What participants wanted was access to support that respected their autonomy and focussed on their genuine needs as they saw them. Alongside this, participants wanted access to safe and affirming medical care without fear of shame or punishment. Unfortunately, such hopes were rarely met when people sought support.
The void of care
Our most important finding was twofold: first, almost all people with experience of self-harm had one or more negative experiences of care, including responses that felt punishing, stigmatising, and shaming. Second, everyone we spoke to felt provision of care for self-harm was inadequate, that people who self-harmed might seek help but that they might be placed on long waiting lists, be turned away from or passed between services, or simply find that specific sources of support (such as community spaces) were non-existent. These issues are not unique to Torbay and are both structural and widespread across the UK. The report further confirms what many working in this sector, or simply living with self-harm, have long known: the care available is utterly inadequate.
We found that many people wanted to be able to provide better care, but were unable to do so because of failures in provision, staffing, training, and long-term financial support – this was true both in the third sector and within statutory care. Across our consultation, we gained a clear sense of a system under enormous strain after decades of austerity which have impacted every space where care might be provided. Many people talked of understaffing within the NHS, a lack of inpatient beds, and hugely long waiting lists for sustained therapeutic care such as Dialectical Behavioural Therapy or other forms of psychodynamic counselling. Others talked of the strain placed on teachers, who often felt overwhelmed and under-resourced, wanting to support students yet without the time, training, or flexibility to do so appropriately. Participants discussed the rising cost of living, the specific position of Torbay as an area of high deprivation with little investment in infrastructure, and the lack of community resources such as community centres, youth clubs, or Family/Sure Start centres. Those working in the third sector talked about the desire to provide alternatives to medicalised and individualised forms of care, but were hampered by the prevalence of project-based (as opposed to core cost) funding, which made it difficult to establish and maintain programs of sustained support.
The difficulty of sustaining care, in any form, emerged as one of the key themes across the consultation. People who self-harmed often found it extremely difficult to access care that amounted to more than a one-off conversation, or a brief program of Cognitive Behavioural Therapy. When attempting to access care, often at times of crisis, those seeking support often spoke to different people every time, who often gave them conflicting advice or even conflicting diagnoses. They were often moved quickly through or out of NHS services, dismissed from A&E with nothing more than a number for the Samaritans. In contrast, when good care was possible, it often involved being able to establish a good and trusting relationship with an individual care provider, over a long period; this might be either a GP, a therapist, or a care coordinator, but in each case trust, respect for autonomy and choice, personalised care, and open conversations were key.
Hopes for the future
In general, people spoke of their hope for better forms of care, while recognising that many of the current limitations were structural, and determined by broader patterns and policies regarding funding and capacity. Many mentioned a general sense that there was a poor understanding of self-harm, that individuals who might be providing support did not feel well-informed, and that healthcare staff sometimes made comments contrary to established standards of patient dignity. There was hope that the provision of high-quality training, designed and delivered in partnership with people with lived experience, might improve this. Participants also talked about the potential benefits of peer support, where people might share experiences and provide each other with solidarity and encouragement. In particular, they felt it was important that people who were currently self-harming could attend such groups, and that support rather than cessation was the primary focus.
Beyond this, participants hoped for improved provision of community resources – spaces where people could talk and spend time, places that were easy to access and open out of hours, and opportunities for people to be supported holistically, rather than only in the context of self-harm. They imagined places where people could access light-touch support before the point of crisis, without the imposition of a medicalised or cessation-based framework. Further, participants had practical suggestions around, for instance: increasing the number of care-coordinators, who were found to be particularly useful; providing direct support to people attending A&E which was often found to be a difficult environment; and introducing a system of more sustained post-A&E care, rather than a one-off assessment. Finally, while we weren’t able to speak directly with children and young people, we would strongly recommend that further work be commissioned in partnership with young people to explore ways they might be provided with holistic and accessible support.
Carrying out this project did not lead us to new knowledge or new insight – instead, it confirmed what we, and many others, have long believed: that rather than speaking of a ‘crisis’ in mental health in the UK, we should speak of a ‘crisis’ of mental health care. The current provision of care in our healthcare system, schools, and communities is so far from adequate that it can barely be expressed. To change this requires large-scale and long-term commitment from politicians and policy-makers at the highest level of government. While this does not appear forthcoming, we must all be prepared to make whatever change we can to improve this situation – to give people who self-harm the chance to receive the care they both need and deserve.
About the Authors:
Courtney Buckler (she/they) is a survivor researcher and Executive Director at Make Space. They are also working on a PhD at the University of Exeter exploring the impact of evidence-based medicine on mental health care – courtney@makespaceco.org
Bathsheba Wells-Dion (she/her) is the Communications Lead at Make Space. She is also an English teacher based in Bristol, with interests including cooperative learning, curriculum design, and decolonisation – info@makespaceco.org
Catherine Will
Dec 18, 2024
Anxiety and Art: Uncertain Bodies
Dec 4, 2024
African women and girls will die from unsafe abortions thanks to Trump win
Nov 20, 2024
When are healthy volunteers considered to be at risk? Reflections on the 2024 Revisions to the Helsinki Declaration
Nov 6, 2024
Adolescents struggle with their mental health: blame austerity, not parents
Oct 31, 2024
Self harm care: A community consultation
by Courtney Buckler, Bathsheba Wells-Dion, and Veronica Heney Jul 26, 2023Everyone deserves access to safe and affirming care. The broader literature and anecdotal evidence suggest that safe and affirming care is often absent when it comes to self-harm. In 2020 we (Bathsheba, Courtney, and Veronica) co-founded Make Space, a user-led group which seeks to facilitate generous and open conversations around self-harm. In 2022 Make Space was commissioned by Torbay Public Health to explore people’s experiences of self-harm, and the care available to them in the local area.
Torbay is a coastal borough in South Devon with a suicide rate higher than the national average. While much work has been done around suicide in the area, there was a desire to learn more about experiences of self-harm. Therefore, this project aimed to learn more about the experience of self-harm and the support available – led by people with experience of self-harm. Our focus was on what care was available, where there were gaps in care, and what good care might look and feel like. We talked with people with experience of self-harm, and people who supported those who self-harm in a personal or professional capacity. We carried out interviews, focus groups, and received written testimony. To explore the broader context of our findings and see whether there was anything ‘unique’ about the Torbay situation, we reviewed the academic literature. We spoke to national charities working around self-harm or supporting those who do. Our findings were recently published, in both short form and as a 70 page full report – both can be found here.
Experiences of self-harm
Participants had varying experiences of self-harm. Each person had a different experience of self-harm, including histories, methods, and meanings. Self-harm often intersected with other experiences, but people felt it was rarely understood or responded to within the broader context of their lives. For some, self-harm was linked to suicide. For other individuals, it was an act directed toward preserving life, and many were ambivalent about the relationship between self-harm and suicide. While there was little consensus on the experience of self-harm, the hopes for care were almost unanimous. What participants wanted was access to support that respected their autonomy and focussed on their genuine needs as they saw them. Alongside this, participants wanted access to safe and affirming medical care without fear of shame or punishment. Unfortunately, such hopes were rarely met when people sought support.
The void of care
Our most important finding was twofold: first, almost all people with experience of self-harm had one or more negative experiences of care, including responses that felt punishing, stigmatising, and shaming. Second, everyone we spoke to felt provision of care for self-harm was inadequate, that people who self-harmed might seek help but that they might be placed on long waiting lists, be turned away from or passed between services, or simply find that specific sources of support (such as community spaces) were non-existent. These issues are not unique to Torbay and are both structural and widespread across the UK. The report further confirms what many working in this sector, or simply living with self-harm, have long known: the care available is utterly inadequate.
We found that many people wanted to be able to provide better care, but were unable to do so because of failures in provision, staffing, training, and long-term financial support – this was true both in the third sector and within statutory care. Across our consultation, we gained a clear sense of a system under enormous strain after decades of austerity which have impacted every space where care might be provided. Many people talked of understaffing within the NHS, a lack of inpatient beds, and hugely long waiting lists for sustained therapeutic care such as Dialectical Behavioural Therapy or other forms of psychodynamic counselling. Others talked of the strain placed on teachers, who often felt overwhelmed and under-resourced, wanting to support students yet without the time, training, or flexibility to do so appropriately. Participants discussed the rising cost of living, the specific position of Torbay as an area of high deprivation with little investment in infrastructure, and the lack of community resources such as community centres, youth clubs, or Family/Sure Start centres. Those working in the third sector talked about the desire to provide alternatives to medicalised and individualised forms of care, but were hampered by the prevalence of project-based (as opposed to core cost) funding, which made it difficult to establish and maintain programs of sustained support.
The difficulty of sustaining care, in any form, emerged as one of the key themes across the consultation. People who self-harmed often found it extremely difficult to access care that amounted to more than a one-off conversation, or a brief program of Cognitive Behavioural Therapy. When attempting to access care, often at times of crisis, those seeking support often spoke to different people every time, who often gave them conflicting advice or even conflicting diagnoses. They were often moved quickly through or out of NHS services, dismissed from A&E with nothing more than a number for the Samaritans. In contrast, when good care was possible, it often involved being able to establish a good and trusting relationship with an individual care provider, over a long period; this might be either a GP, a therapist, or a care coordinator, but in each case trust, respect for autonomy and choice, personalised care, and open conversations were key.
Hopes for the future
In general, people spoke of their hope for better forms of care, while recognising that many of the current limitations were structural, and determined by broader patterns and policies regarding funding and capacity. Many mentioned a general sense that there was a poor understanding of self-harm, that individuals who might be providing support did not feel well-informed, and that healthcare staff sometimes made comments contrary to established standards of patient dignity. There was hope that the provision of high-quality training, designed and delivered in partnership with people with lived experience, might improve this. Participants also talked about the potential benefits of peer support, where people might share experiences and provide each other with solidarity and encouragement. In particular, they felt it was important that people who were currently self-harming could attend such groups, and that support rather than cessation was the primary focus.
Beyond this, participants hoped for improved provision of community resources – spaces where people could talk and spend time, places that were easy to access and open out of hours, and opportunities for people to be supported holistically, rather than only in the context of self-harm. They imagined places where people could access light-touch support before the point of crisis, without the imposition of a medicalised or cessation-based framework. Further, participants had practical suggestions around, for instance: increasing the number of care-coordinators, who were found to be particularly useful; providing direct support to people attending A&E which was often found to be a difficult environment; and introducing a system of more sustained post-A&E care, rather than a one-off assessment. Finally, while we weren’t able to speak directly with children and young people, we would strongly recommend that further work be commissioned in partnership with young people to explore ways they might be provided with holistic and accessible support.
Carrying out this project did not lead us to new knowledge or new insight – instead, it confirmed what we, and many others, have long believed: that rather than speaking of a ‘crisis’ in mental health in the UK, we should speak of a ‘crisis’ of mental health care. The current provision of care in our healthcare system, schools, and communities is so far from adequate that it can barely be expressed. To change this requires large-scale and long-term commitment from politicians and policy-makers at the highest level of government. While this does not appear forthcoming, we must all be prepared to make whatever change we can to improve this situation – to give people who self-harm the chance to receive the care they both need and deserve.
About the Authors:
Courtney Buckler (she/they) is a survivor researcher and Executive Director at Make Space. They are also working on a PhD at the University of Exeter exploring the impact of evidence-based medicine on mental health care – courtney@makespaceco.org
Bathsheba Wells-Dion (she/her) is the Communications Lead at Make Space. She is also an English teacher based in Bristol, with interests including cooperative learning, curriculum design, and decolonisation – info@makespaceco.org