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This is a pre-publication version of the following article:
Eracleous, H. and Davidson, S. (2009). The gender identity development service: Examples of multi-agency working. Clinical Psychology Forum, 201, 46-50.
This paper explores multi-agency working and some lessons learnt when working with young people with complex presentations. Examples are offered from the work at the Gender Identity Development Service (GIDS) where the authors are based.
Multi-Agency Working as Best Practice
Multi-agency working is firmly advocated in government agendas such as The Children’s National Service Framework (2004) which encourages services to be designed around the needs of the child, not individual problems. The children’s commissioner, Professor Aynsley-Green summarised this vision by stating that “the practical challenge is ensuring that children’s services locally are coherent in design and delivery, with good coordination, effective joint working between and across sectors and agencies, with smooth transitions and in partnership with children, young people and families” (Executive Summary, Department of Health, 2004).
In Every Child Matters (2003) emphasis is on empowering the young person to make a positive contribution, facilitating communication across services and reducing stigma through acceptance and understanding, modelling and consultation. The Children’s Plan (2007) asserts that services need to be shaped by and responsive to young people and families, not designed around professional boundaries. This Plan espouses working in teams made up of professionals from different backgrounds, and is supported by the Children’s Workforce Network, which aims to “encourage the shared values of practitioners with distinct expertise and roles and value their contributions” (Children’s Workforce Network, 2008).
GIDS and multi-agency working
Multiple agency working is an essential part of the work of the GIDS which is a Tier 4, multi-national service. The GIDS is part of the Adolescent Department at the Tavistock & Portman Foundation NHS Trust, in London. Referrals of young people (up to the age of eighteen) are accepted from health and social care professionals from tier three services. The young persons present as feeling unhappy and at odds with their biological sex and often want to be the other sex. Gender identity difficulties are rare and complex and can be associated with psychological difficulties linked to all aspects of development, including cognitive, physical and social (DeCeglie, 2000). Gender identity difficulties can be seen on a continuum with Gender Identity Disorder at the extreme where individuals display a strong and persistent desire to be, or insistence that they are the other sex. These individuals may dress and take on the role of the other sex and feel distressed and uncomfortable with their biological sex (i.e. APA, DSM-IV, 2004). There are many potential outcomes and etiology remains inconclusive and is likely to be multi-faceted (Cohen-Kettenis, 2003).
At the GIDS the young people are seen individually and with their families for assessment and psychosocial intervention by members of the multi-disciplinary team which includes psychiatry, psychology, psychotherapy and social work. The GIDS also works closely with two consultant paediatric endocrinologists who run a regular liaison clinic where all members of the team attend. Discussions take place during the weekly team meetings providing a space where shared formulations can be derived at drawing on the experiences and skills of the whole multi-disciplinary team.
Due to the wide geographic area from which referrals are accepted and the complexity of the presentations, outreach is always conducted. ‘Network meetings’ (DiCeglie, 2005) between the professionals involved in the young persons care, including the GIDS clinicians are usually held in the young person’s local service. This is most often at the young person’s local Child and Adolescent Mental Health Service (CAMHS) or school. The meetings aim to offer an opportunity to co-ordinate care and offer consultation and guidance with the network of professionals involved. The professionals meet in the first hour and are joined by the family in the second hour. In the second hour feedback is given to the family about what has been discussed and they are asked for their views and questions. An action plan and further network appointments are then coordinated.
The aims of the GIDS are articulated by DiCeglie, (1998) and include recognition and non-judgemental acceptance of gender identity problems and working on any associated problems such as behavioural (i.e. school difficulties), emotional (i.e. mood disturbances) and relationship difficulties. They also include exploring secrecy versus privacy and/or the mind–body relationship by promoting close collaboration among different specialists. These aims empower the individual and their family who may feel shamed or at threat from the prejudices of society. The gender identity issue is considered holistically with relationships between the GIDS and the individual’s local health services, education and other non statutory agencies fostered.
Intervention aims to allow mourning processes to occur for the young person and their family who have spent many years knowing the young person in their biological gender. Furthermore, the aims include the promotion of separation and differentiation, enabling the young person and the family to tolerate uncertainty in gender identity development and to sustain hope (DiCeglie, 2000). The network meetings are carried out with the young person and their families at the forefront of the process with the families needs and preferences met flexibly (i.e. for meetings to take place in the young person’s locality). These meetings aim to reduce stigma through modelling and consultation on issues of gender aiding acceptance and understanding.
Examples of multi-agency working at the GIDS
Young people referred to the GIDS often prefer to be called a name other than their originally given name which they choose to better reflect their preferred gender and to be referred to using the accompanying pronouns. The following examples illustrate the multi-agency work carried out at the GIDS. The confidentiality of the families has been protected through changing all identifying details.
Alex
Alex is a biological female who at referral was aged fifteen and presented as being unhappy with his biological gender. He also experienced a low mood and difficulties at school including bullying. We used the name “Alex” and male pronouns throughout our work out of respect for his wishes. Alex moved between the homes of his grandparents and his separated parents in North Wales as his mother had limited space in her home and was waiting to be re-housed by the local authority. Alex’s mother lived with her five young children in council accommodation. The families all lived nearby so that Alex had regular contact with both of his parents and two sets of grandparents.
A professionals’ meeting was set up as part of the assessment process in order for representatives from the services already involved to meet together to coordinate their roles and to facilitate communication. The services involved included CAMHS, school and a voluntary agency which was mostly assisting Alex’s mother with housing and financial issues. The meeting was held at Alex’s local CAMHS and included representatives from all three organisations.
The meeting focused on strengths for example Alex had sought out a teacher at school who he felt was more sympathetic towards his needs and this teacher attended the meeting. The meeting aimed to reduce areas of stress for Alex by considering ways of managing Alex’s gender identity issues across his life contexts. We discussed how, with the help of his teacher Alex could negotiate more appropriate ways of managing life at school. This information was then passed on to other members of staff at the school so for example, Alex was encouraged to use the disabled toilets in order to avoid having to choose between either the male/female toilets which he found difficult. Alex was also referred to by the name he chose and male pronouns as he requested at school (a deed poll change of name also followed). The information sharing and problem solving provided a bridge between the services.
The voluntary agency representative offered to work with the psychotherapist to help Alex engage with CAMHS by arranging for them both to meet Alex at a location nearer to their homes, more convenient and less stigmatising to Alex where the voluntary agency was based. This meant that Alex and his mother could have regular access to different professionals’ who offered different support in the same place and at the same time thus minimising the number of appointments and travelling time and costs. Furthermore, the representative from the voluntary agency was able to speak with the teacher about the transition for Alex between Year 10 and Sixth Form College.
When it became clearer that Alex fulfilled the diagnostic criteria for GID and wanted to move towards taking hormone blocking medication the GP was invited to the network meeting in order to think about the appropriateness and timing of this next step. Information was provided about the possible options, timescales and processes were discussed.
Our work with Alex highlighted the importance of the network system, having a shared understanding of his presentation and therefore consistency in approaches taken for example, with how to refer to Alex. An appreciation of each others professional roles, remits and resources helped both the professionals involved and Alex and his mother feel clearer about the professional input. Moreover, it enabled the establishment of open channels of communication and increased trust between colleagues from different settings which facilitated thinking about the holistic needs of Alex and reducing his number of appointments and the cost of getting there.
Ed
Ed was a nine year old biological boy who was referred by his local CAMHS due to persistently playing with girls toys and dressing up in female clothes. Ed had experienced bullying, falling behind with school work and difficult peer relations. A history of domestic violence was reported as well as maternal anxiety. Ed was not able to attend meetings in London as his mother did not travel out of the town where they lived. We arranged to meet with Ed and his mother at their local CAMHS for the initial assessment session. We followed this with a meeting at the local hospital to meet with the rest of the professional system. Many professionals had become involved which led to Ed’s mother feeling anxious and confused about their roles and level of intrusion. The network meeting was an opportunity to clarify roles and agree and communicate these with Ed and his mother. Given the difficulty of accessing the GIDS a process of indirect work was agreed so that Ed could be assessed without having to come to London. Given a history of domestic violence, elements of risk were shared across the agencies with risk assessments being documented and communicated appropriately.
Ed was unsure about his feelings regarding his gender identity and concerned about the effects of social prejudices such as he experienced with the school bullying. This influenced Ed’s mother’s ambivalence about engaging with services preferring not to continue to seek professional input to address the issues. Some staff members involved had to leave their service and this resulted in further discontinuity for Ed. Follow up meetings aimed to elicit and address different perspectives on Ed’s presentation and to generate a context where ideas, beliefs, alternative meanings and behaviours could emerge (Bor and Miller, 1991). Some professionals had begun to feel hopeless due to the inconsistent engagement so providing this context was found to be highly valuable.
Discussion
Network meetings amongst professionals followed by involving the young person and their family are vital in facilitating communication between professionals from different contexts, with different goals, funding streams and foci. It is important for the young person and their family to feel empowered by understanding the role of each professional involved in their care, to understand and consent to their treatment, and be offered consistency and predictability.
For professionals clear aims, roles and responsibilities and timetables need to be agreed between the involved agencies. Moreover, commitment at all levels of the organisations involved and good systems of communication and information sharing should be facilitated. Guidelines about sharing information are always followed and the implications of confidentiality for each service and for the meeting as a whole are discussed at the beginning of each meeting. The network meetings also facilitate the assessment of risk and clarify each professional’s responsibilities.
The challenges of multi-agency working include the complexity of different organisational cultures and their priorities for example different organisations will have different targets to meet. Sometimes work with a particular family will need long term intervention which some services will not be set up to carry out and therefore a handover to other services will be required (e.g., from a young person’s service to an Adult service). There will sometimes be differences between services or between the family and an involved service in formulating difficulties and the appropriate treatment. Professionals may hold different ideas about physical treatment (e.g., the timing of certain physical interventions) from each other and the individual and their family. Problems with housing and financing will often have a significant impact on the individual and the families’ access to services, their priorities and level of engagement. Each of these needs to be explicitly addressed.
Moreover, despite the agreement of a plan of action at a team meeting a number of follow up actions are often not followed through due to the problematic engagement of the family, as with Ed. Resources in different organisations or services vary and different services will have different referral thresholds and ways of engaging the young person which may mean discontinuing the offer of a service if the young person does not attend/has difficulty engaging. Furthermore, funding can hinder the speed and amount a service can offer. Long distance travelling takes up economic resources and time which decreases the availability of staff.
Despite the challenges, multi-agency working is vital and the advantages are testament to this. We have found that working in this way improves the overall experience for the young person and their family by reducing stigma (e.g. by combating problems at school such as bullying), increasing understanding by finding a common language with which to explore gender and the early identification/intervention for mental health or other problems. Multi-agency working can also promote social inclusion and enable a holistic approach by information sharing and raising awareness/understanding of other agencies (Atkinson, Wilkin, Stott, Doherty and Kinder, 2002). Therefore, support and training in multi-agency working for staff and research on what works and why, is recommended.
References
American Psychiatric Association (2004). Diagnostic Statistical Manual, Version IV.
Atkinson, M., Wilkin, A., Stott, A., Doherty, P. & Kinder, K. (2002). Multi-agency Working: A Detailed Study. (LGA Research Report 26). Slough: NFER
Bor, R. & Miller, R. (1991). Internal Consultation in Health Care Settings. Karnac Books.
DiCeglie, D. (1998). A Stranger in my own body: Atypical gender identity, development and mental health. Karnac Books.
DiCeglie, D. (2000). Gender identity disorder in young people. Advances in Psychiatric Treatment, 1, 6, 458–466.
DiCeglie, D. (2005). The Organisation of the Gender Identity Development Specialist Service: The Network Model. San Camillo Hospital, Rome.
Executive Summary National Service Framework for Children, Young people and Maternity Services (2004). Department of Health.
Every Child Matters (2003). www.everychildmatters.gov.uk.
The Children’s Act, (2004). www.everychildmatters.gov.uk/strategy/guidance.
Children’s Workforce Network, (2008). Next Steps. e-bulletin no.10
The Children’s Plan, Building Brighter Futures, (2007). Department for Children, Schools and Families.