Simon Hardcastle, Rainbows Hospice for Children and Young People

Describe your role
I have been working at Rainbows Hospice for Children and Young People for two years as a Family Support Nurse. Before that I worked as the Participation Coordinator for Leicester Child and Adolescent Mental Health Service. At Rainbows I have taken a lead role in the development of participation within the hospice. We now have in place a participation steering group with members from all departments including Fundraising, Administration and Finance. We also are developing our Participation Strategy in conjunction with children and young people. Our main focus at the moment is the involvement of our children and young people who  have no verbal communication and exploring how we best utilise our skills in communication. I have also been involved with the development of a national participation toolkit put together by Children’s Hospices UK. This will be launched in June 2010.

What makes a good participation worker? 
I think there can be a tendency to think of a “us and them” when working with people be it adults or children and young people. I believe if you can connect to a level which is appropriate to whom you are communicating with, a more positive outcome can be achieved. Communication is paramount when working with participation, however, I think most of all is the ability to have fun.

What do you think are the main barriers to children and young people's participation? 
One aspect that I found when working within child and adolescent mental health, and in some degrees within healthcare, is that some people believe that children and young people are too sick to be involved. Again I think communication plays a much more important role here, as you would not provide some form of treatment without evaluating whether it is effective or not, or asking the child or young person if it is working for them. Also I still believe that although participation is high on people’s agenda’s, there is still a consensus of it being tokenistic, and it would be good to see how many organisations after a while resort back to how things may have been before any participation work took place.

What tips do you have for effective participation of children and young people?
I think we have to be really honest with our children and young people when asking them to be involved in any projects or groups. Be clear with them about their level of involvement. Also  it is important to get to know the young people you are working with. At Rainbows we have to be mindful that we have children and young people who do not communicate verbally. So it is important to have the skills to be able to communicate with the children and young people you are working with. With children and young people it is also important to give that extra time to obtain their views. A half day session will not be long enough for many of the children and young people who use Rainbows. As workers you also need to be prepared to put the work in yourself too.

What is effective participation?
Effective participation allows the voice of children and young people to remain at the forefront of the policies and procedures of the organisation they are involved in. If an activity is taking place and the first words that come out of people’s mouths are “what would the children and young people think?” or “we need to ask our children and young people this”, then i think that we are somewhere near achieving this.

One thing that would improve children and young people’s participation in England would be…
Of course the obvious would be non-tokenistic involvement in all areas for children and young people. More funding to allow this to happen.

What is your favourite participation resource?
We do not have a specific tool that we use at Rainbows as all our children and young people are unique and individual, therefore no one approach fits all. Therefore we have to be very creative when thinking of other ideas to involve children and young people.

Participation Works is a partnership of…
British Youth CouncilChildren's Rights Alliance for EnglandKIDSNational Council for Voluntary Youth ServicesNational Youth AgencyNCB