Describe your role
I am Head of Patient and Parent Involvement at The Phoenix Centre, a regional NHS adolescent eating disorders unit in Cambridge. I work with the young people, their families and the staff team to ensure that the patients and family members are well-informed and have the opportunity to express their views, to participate in decision-making and to share their experiences with others. This means that I'm involved in a whole range of activities from designing patient information, managing our website, liaising with our Friends charity and organising stakeholders' events to supporting young people and parents to run workshops at our conference, working with our Trust's Human Resources department to develop involvement in recruitment and supervising parents of ex-patients who help in our parents' support group.
What makes a good participation worker?
A good participation worker believes in the expertise of young people and their families and the value of the contributions they can make. They get young people involved from the earliest possible stage and work with them throughout the process, providing whatever support is required. They need to be flexible, creative and have good communication skills.
What are the barriers to involving children and young people?
Resources are often a barrier - the time to make involvement possible and meaningful, the ability to reward participation and the constraints on what action can realistically be taken in response to involvement. It is vital that young people are informed about these constraints at the outset.
Adults' attitudes to young people - a view that they need to be protected from addressing challenging issues, underestimation of their ability to participate meaningfully, or fear of sharing or handing over control. A key part of a participation worker's role is to challenge these attitudes and demonstrate that participation is possible and extremely valuable.
Tokenism - involvement taking place in order to tick a box or provide data for a report. Over time, as the benefits of involvement are seen, there will hopefully be cultural change such that participation is no longer seen as a separate area of work carried out by a few but instead the principles are embedded in everyone's roles and responsibilities with a positive impact on the services provided and the relationships formed between professionals, patients and their families.
What are the benefits?
For young people, increased self-esteem and self-confidence, learning and developing skills and meeting new people.
For professionals, tangible changes and initiatives that improve the service, enhance effectiveness and increase job satisfaction.
What tips do you have for effective participation of children and young people?
Ensure all young people are offered the opportunity to participate and try to make it possible for them to accept this offer. Be persistent in flagging opportunities for involvement and encouraging other adults to consider participation. Be clear about boundaries and expectations from the outset and make sure young people receive thanks, recognition and feedback about their involvement. A lot of participation work involves asking something from young people, so it is really important to give something back, especially when working with the same group of young people for a while.
What is effective participation?
When young people feel that they have been heard, their views have been valued and they have made a difference.