Melanie Goodwin, in consultation with Sue Richardson and Remy Aquarone
Kathryn Livingston, a long-term member of the ISSTD, has been awarded the prestigious British Empire Medal in the Queen’s New Year’s Honours List for her ‘Services to people with dissociative identity disorder and founder of First Person Plural’. This award is for ‘meritorious service worthy of recognition by the Crown’ and is an extremely important recognition of Kathryn, and through her, trauma and dissociation work in the UK. First Person Plural is the UK’s only survivor led organisation for persons experiencing DID, their carers and associates (www.firstpersonplural.org.uk).
Prior to founding FPP, Kathryn worked for Mind and Rethink, two of the leading UK national mental health charities, where she supported service users to become involved in the planning, development and delivery of mental health services and the training of mental health professionals.
Showing great foresight at a time when such service-user involvement was in its infancy, Kathryn encouraged service users to acquire knowledge of the policies, strategies and theories that professionals referred to. This enabled them to go beyond sharing their own personal experience of living with a mental health condition, to using their lived experience to illuminate and exemplify the points they wanted to make about policies, theories etc in their discussions with and training of professionals.
In turn this gave the involved service users a more powerful collective voice to influence changes in mental health services. They became experts-by-experience. Kathryn’s definition of the term is:
“someone who has personal experience of living with a mental, emotional or physical health condition and uses that experience to illuminate and exemplify their own acquired knowledge about the condition, in order to help professionals and others respond effectively to the condition when they come across it in others.”
This background work became the foundation of the work of FPP. This organisation, was formed in 1997 when an independent newsletter for people with MPD, ‘Collective Consciousness’, announced they were ceasing publication. This prompted Kathryn to ask if anyone was interested in maintaining a newsletter. Fortunately several people responded and this group founded First Person Plural. Kathryn has edited quarterly editions of their newsletter, Rainbow’s End, for twenty years, with only one small break, and her efforts have made this a valued and significant publication.
In 1999 three FPP members, led by Kathryn, ran a workshop, ‘Swings and Roundabouts’ at the ISSD–UK conference in Manchester. The workshop provided many delegates with their first experience of learning from “experts-by-experience”. Until this landmark event, dissociative survivors’ roles at such conferences tended to focus on disclosing their own histories. FPP recognises this can be helpful, but in this workshop FPP demonstrated that sharing information and supporting others, including survivors and professionals, does not require disclosing graphic details. Instead survivors were able to effectively use their experience to help others better understand the impact of abuse, and the lasting consequences, including DID.
The overall aims of FPP are to improve knowledge, understanding, & recognition; encourage & facilitate mutual support; and move towards better access to specialist assessments with effective treatment and care pathways. This is being achieved through training courses, awareness raising sessions, written information, audio visual resources, a members’ newsletter and access to online support forums.
Receiving the ISSTD audio visual media award for their training film ‘A Logical Way of Being’ in 2011 was an important and powerful point in their history. The film features three people with lived experience and three clinicians. The natural way the information throughout the film compliments both perspectives has helped people to appreciate the benefits of this collaborative way of working.
FPP believes knowledge is empowering and is best achieved through respectful, structured, inclusive and shared learning. FPP’s training programme has evolved over the last fifteen years to meet changing needs and in response to the difficult financial climate. Within their training programme they are responding to individual requests for commissioned training, including for the NHS, rape crisis centres, therapist forums, Criminal Justice Liaison, supported housing associations and many more. Some of these trainings will be co-delivered with clinicians.
An important part of FPP’s development is to work collaboratively and proactively with other like-minded UK organisations to co-produce resources, training and workshops for conferences. Through sharing the same ethos, this open and respectful approach allows many different forums to disseminate the same information, engendering a sense of continuity and uniformity.
As well as being a long term member of ISSTD, Kathryn has been a member of the ESTD since it was founded and is an influential and active member of the ESTD-UK training group. This is where the benefits and long term outcomes of a collaborative equal partnership between clinicians and experts-by-experience can be most clearly demonstrated. Initially FPP, led by Kathryn, worked closely with Sue Richardson and Remy Aquarone, both highly respected UK clinicians, and members of ISSTD and ESTD. They quickly recognised the value of this shared way of working and continue to be strong advocates for collaboration.
Through ESTD-UK Kathryn became involved in writing and presenting a progressive learning programme for clinicians, including a new online programme, where her IT skills have been vital to the whole project. The training is presented by experienced clinicians and experts by experience, led by Kathryn. The working together mirrors the need for partnership working within the therapy room and it is probably no coincidence that all those involved really understand what respectful and inclusive working is.
Kathryn is a role model to many who live with DID. She is very open about the continual internal communication and plans that have to be put in place to allow her to do this work. She is open about the times she finds it hard to function and it is inspiring that she is someone with complex mental health needs who has also achieved so much.
Last year FPP and the ESTD-UK, along with others, organised a two day conference. One consumer wrote afterwards:
‘I just want to say how important the beauty of the conference and depth of kindness amongst the people and the common desire to bring healing, hope and change was. No one seemed to be championing their own greatness and there was a real sharing of common ground’.
This feedback epitomises what Kathryn represents and has been pivotal in developing. It remains an ongoing aim for those who have been privileged to work alongside her.
Kathryn is indeed a justified recipient of this award.