Families supported by Demelza attend project launch at House of Commons

The What Matters to Me launch, which took place on Thursday 13 March, was the culmination of two years research for The Challenging Behaviour Foundation.

The charity has been working with Demelza to raise awareness of the importance of engaging with young people with severe or profound and multiple learning disabilities to involve them in consultations and decision-making at all levels.

The project aims to encourage society and policy makers to listen to young people’s experiences and preferences and engage with them about the services and support available to them.

Demelza was instrumental in bringing families together as part of the project and hosted a hydrotherapy session for young people together with their peers which was such a success, it led to the creation of regular peer to peer sessions.

Demelza’s Transition Navigators Claire Collins and Paul Packman, who work with families whose children are aged between 16 and 25 and supported by the charity, attended the event.

Sittingbourne and Sheppey MP Kevin McKenna sponsored the event at the House of Commons.

He said: “It was a privilege to be asked to sponsor the What Matters to Me launch in Parliament with Demelza and The Challenging Behaviour Foundation.

“It’s essential that everyone has the opportunity to participate in consultations and influence the decisions that shape their lives.

“Last year, I had the honour of visiting Demelza, a key partner in the project. It was fantastic to see how everyone worked together collaboratively, challenging themselves to help young people who otherwise struggle to be understood to express what is most important to them.”

The launch event was a chance for professionals to find out more about how they can best include young people in their own decision making and engagements, as well as supporting families to ensure their children and young people are included in decision making.  

Now the launch has taken place, The Challenging Behaviour Foundation is working to expand the reach of the project and influence the necessary changes.

Claire said: “It's been an absolute privilege to be involved in this project and to understand so much more about these young people and how we can support them.

“Including theme in all aspects of society should be the norm not the exception which is why we wanted to set up the monthly group swimming sessions.

“Paul and I will continue to advocate for these young people to ensure that their care, wellbeing and societal interaction continues beyond 18.”