principles into practice network

Service user participation and influence

Topics covered in this article: Borderline Personality Disorder, Hospital, Services and support, Care & treatment

Award Winners

Royal Edinburgh Hospital Self HarmService 

CAPS Personality Disorder Project

Contacts Merrick Pope, Royal Edinburgh Hospital Self Harm Service merrick.pope@nhslothian.scot.nhs.uk or 0131 537 6390

Naomi Salisbury, Naomi@capsadvocacy.org or 0131 5378 7177

From 2005 the Royal Edinburgh Hospital Self Harm Service (SHS) has been working to improve the care, services and treatment for people who self harm. The service was set up following lobbying by service users, who have been involved since the outset in the service design and in how various strands of work are delivered and evaluated.

Service users can access peer support groups, art therapy, a women only swimming group, a skin camouflage clinic and one-to-one sessions. Carers are offered individual support and information, and the service educates and develops skills for workers of all disciplines, supporting their work through reflective practice and clinical supervision.

The CAPS Personality Disorder Project (PDP) is a user-led collective advocacy project which was set up to improve support and information for people given a diagnosis of personality disorder. It was set up in response to service user lobbying and in recognition of the gaps in support for people with this diagnosis. The project supports people with this diagnosis to come together, share views and have an influence on services.

Since April 2009 the PDP has run an extensive user-led consultation about service users' experiences. The consultation has been used to develop a resource and training programme about personality disorder written by service users. The project is directed by a service user reference group, supports service users to deliver personality disorder training and awareness sessions and has strong links with a local peer support group for people with a diagnosis of borderline personality disorder.

As of 2009 the two services have developed a voluntary-statutory sector partnership, collaborated in numerous areas and pooled strengths in support and advocacy to ensure better care, treatment and involvement for people with a diagnosis of personality disorder.

People given a diagnosis of personality disorder have described difficulties receiving appropriate, respectful care and treatment from mental health services. The fundamental philosophy of our work is to improve attitudes towards people who self harm or are given a diagnosis of personality disorder, reduce the stigma attached, ensure service users have a voice and influence on care and treatment and that they have care provided which is appropriate and as of good quality as that for any other mental health issue.

Both the SHS and the PDP work are user-led and -directed services which support service users to have a direct impact on the care and support they need. Both projects were set up in response to service user lobbying about the gaps in support and services for people with a diagnosis of personality disorder.

Many people involved with the SHS or the PDP began by meeting with the project leads and over time have become confident enough to meet others in groups, better represent their views about their care and in some cases become involved in delivering training. Service users have said that they feel less isolated having met and read about other people with similar issues to themselves, feel more empowered and have better access to information and feel understood and supported by other service users and the project leads.

Service users have been able to contribute to consultation and training in the way in which they feel most comfortable. This has included taking part in interviews at a location of the service user's choice, as well as being able to fill in a survey online or on paper, join groups on Facebook and write personal narratives. This meant that people could contribute to the project and be part of collective advocacy without having to take part in a group unless they felt comfortable doing so.

The PDP has consulted with a wide range of people to find out about their experiences of using services. Following this a resource has been written by service users for staff about the experience of personality disorder. The resource describes the everyday experience of personality disorder, getting the diagnosis, what is helpful and unhelpful in support and treatment and how different people manage. It is illustrated by quotes, pictures and poems from service users.

Research conducted by the PDP with service users, carers and staff showed that an area of concern for all was the understanding of and working with people given a diagnosis of personality disorder, in particular a Borderline Personality Disorder (BPD) diagnosis is often given to people who self harm. In light of the research the content of the self harm training offered at the Royal Edinburgh Hospital was reviewed using the skills of someone with lived experience who is now co-facilitator of the course, and a specific module on personality disorder diagnosis included.

Along with the Lothian Psychological Interventions Network, the experiences of service users have also been used to develop regional training on personality disorder which tackles areas service users identified as problematic, such as negative attitudes and a lack of information on personality disorder. Service users are involved in delivering the training and presenting workshops for staff in partnership with people from a variety of health/voluntary service backgrounds. This training will also be used as the main training tool to underpin the roll-out of the Integrated Care Pathway for Personality Disorder in Lothian.

Both the self harm training and personality disorder training promote the individual service user as the expert of their experience and a full partner in the therapeutic process.

Service users contribute ideas about what they need to manage and live their lives as positively as possible, and the SHS and the PDP then go about identifying how this can be achieved, either through offering something themselves, or by identifying funding/volunteers/other services. This has seen the two projects work with service users to set up groups such as peer support, skin camouflage, Dialectical Behaviour Therapy graduates group and a PDP reference group.

The self harm peer support group have a review every 6 months, where the format and timings of the group are discussed and decisions made if changes are required.

The Skin Camouflage Clinic is a result of people expressing their distress at others' reactions to their differences in appearance. The clinic has been mindful of people requiring more time for an appointment, to accommodate people's need to feel as comfortable as possible about showing scars which are potentially private and distressing, and is sensitive to issues of privacy and feeling safe in the environment.

The swimming group is open only to women who have marks/scars following self injury. The concept came originally from a service user, who asked if her desire to go swimming and difficulties using a public pool could be met. The group is held is a school pool after hours, with no-one else present. The women can wear whatever they feel comfortable in, and the lifeguard/facilitators are people who have specialist training in working with people who self harm.

A number of people taking part in the PDP express themselves through art and poetry and this has been incorporated into the project. Service users have taken part in a film about personality disorder, where only voice was used for anonymity and others have displayed artwork in an exhibition as part of the Scottish Mental Health Arts and Film Festival 2010.

The joint working of these services deserves a Principles into Practice Award because the values and principles of the mental health act underpin all of the work, user involvement and direction are central to the projects, and the combination of these two services consistently demonstrate an ongoing positive impact on the care and support people with a diagnosis of personality disorder receive.

Service users say:

'Since taking part in the project I have become less ashamed of my diagnosis'

'You're 'you' first rather than self harm being seen first'

'The fact that there is a project means that someone cares about what happens to us'