Mental health service transitions for young people
Accessible and easy to use mental health services: Involving young people and their families in service design
Listening to young people and implementing what they say can produce significant improvements in provision. Their involvement in planning, developing, commissioning and providing services can suggest where and how to improve. (11)
Three process mapping workshops with stakeholders were held as part of the practice enquiry to discuss the complexity of the environment in which staff operate. Although staff at the workshops said little spontaneously about this topic, young people themselves were keen to be involved in service design and to have their views heard. The work of The Centre for Excellence and Outcomes (C4EO) on children and their families underpins the fact that young people's involvement in individual decisions about their own lives, and collective involvement in matters that affect them, is key to designing and delivering better services.
The main message in the practice enquiry from young people is the importance of professionals listening to them, and understanding their views and priorities. When asked, young people will have a range of ideas about what makes for good practice.
- Uthink was shaped by both evidence-based research and stakeholder influence. Young people, parents and carers were consulted in the original bid (to the Big Lottery fund) and their ideas strongly influenced the overall structure of the programme and the content of individual sessions. Local steering groups involving young people seek to support service delivery and there is a comprehensive framework for monitoring, using specially designed tools and techniques.
- North Tyneside embraced the principles of the NSF and carried out extensive local consultation. Young people have commented positively on the increased level of home visiting and outreach work.
- Sheffield Y-Talk consulted extensively when designing its service: young people were asked what would help them access emotional and mental health support.
- The transition group in Peterborough meets every two or three months, and involves the early intervention in psychosis service (CAMEO) and the local CAMHS team to ensure the smooth transition of young people under the age of 18 with psychosis or possible psychosis. Much of what the group does is case-based (23 young people in 18 months) but the group has also shared training events and supported some of the research projects within CAMEO. The group has collected systematic feedback from families and young people which has been generally positive but has also outlined areas for development, including the use of written information and thinking about how long the transition process should take (some saying not too long for parallel working). Young people have reported a greater sense of the teams working together.
- The Rivendell Unit in Wakefield has a multi-disciplinary transition service for 17-year-old women. This designated unit is within a large (adult) female prison (HMP Newhall) for very vulnerable young women with high rates of self-harm and complex psychopathology, often resulting from multiple traumatic experiences in the past. The young people are transferred on their eighteenth birthday to the main prison site, with one or two transfers each month. The women were involved early on in the design of the new service by means of a focus group. They said that getting advice during transition was a key need. They emphasised the importance of having someone to talk to, of health professionals gaining their trust and maintaining confidentiality, and having practical support such as in filling out forms. Formal feedback on the service is collected from the young people who were transferred. The main improvement is that the protocol facilitates communication between the young person, the forensic CAMHS team and the adult mental health team from early on and well before the actual transfer is due. This reduces the anxieties of the young person and of the system.
Providing information about support
It's important to provide information about the transition process, and the services and support available such as non-NHS and other health settings, voluntary sector services, primary health care and other universal services. Providing information is essential to enable the full, informed participation of young people in their transition.
Staff who attended the practice enquiry mapping workshops thought that there was a lack of information for young people and their parents and carers, who often don't know what is available nor how to access it. Young people also think this. Additionally, staff may not themselves know what is available outside their own service. Staff interviewed in the course of the practice enquiry suggested a single website providing information to staff, young people and their families, so that everyone has access to the same resource.
Young people need accessible and comprehensive information about their mental health including treatment choices and self-help options. Many do not really understand what is meant by 'mental health problems' or 'disorders', and fear the stigma of needing mental health services. They may not have had time to learn about their condition nor how to manage it, and they may have a range of other difficulties, including poor self-esteem or confidence, co-existing substance misuse problems, and difficulties with their education, welfare benefits or housing. All of these factors emphasise the need for a holistic approach to supporting young people when they are in transition to adult mental health or other adult services.
Young people value information which:
- is given both verbally and 'reinforced' in writing
- is attractive and jargon-free
- is culturally and age appropriate, and relevant
- prepares them and their families for transition
- provides signposting from one service to another.
It was a big shock coming to the secure unit. I didn't know what mental health was, it was frightening, I didn't know why I had it.'Angela, Liverpool
- Central Norfolk EIT provides young people with information about psychosis and the ways in which it could affect them.
- Liverpool is developing a website for staff, young people and families, bringing together information on transitions and services.
- Hafal, in Wales, has developed an information hub to give timely information - the need for which young people themselves identified - consisting of guides, leaflets, web resources and other accessible sources.
- The Rowan Centre, based in Elgin, Morayshire, has produced a leaflet for young people and their families entitled 'Moving on to adult mental health services - planning for the change: information about transitional care and adult mental health services.'
- Leeds CAMHS, including inpatient and community CAMHS, extended the age of service users from their seventeenth to their eighteenth birthday from 1 April 2010 (inpatient), and 1 October 2010 for the rest of CAMHS. This has led to a renewed focus on transition processes.
- Youth Access has a national database of services.