The PCA was started by Parent Carers who want to make a difference to other families like theirs, to use their own lived experiences to help support less experienced, more vulnerable families and give them the tools and knowledge they need to navigate the systems and processes they will come across.
We hope that this group can enable parent carers to connect, to create a deeper culture change in society to ensure our families are safe and happy.
Our overall aim is to empower everyone to understand their rights, the rights of the child/young person and feel able to access vital services, raise concerns and share experiences.
We now have a team of social workers and family support workers who successfully support families to achieve the best outcomes for disabled children. We are seeing a huge increase in requests for support and we need to keep supporting these families so their children are given the opportunities they are entitled to.
Here is what some of our families have said about the support they have received.
“I would say that the Alliance is all about bringing people together and building strong relationships in and across communities, helping more people to reach their potential, by supporting them at the earliest possible stage, through information sharing, demystifying jargon, and supporting parents and children, some of whom are the most vulnerable and complex in society”
“The Alliance is the one place we can come to for help and advice especially when we are hitting brick walls. We have the help and back up via this group to find professionals who can help and tell us where to go and who to see. They are the light at the end of a tunnel when it is beginning to feel hopeless and the offer of help and support at a dark time is something we cannot afford to lose for parents and children alike.”, and
“For me it has been the networking aspects that have helped to get the right people to hear about the difficulties with the system. Thinking when I posted some issues here and realised it wasn’t just me, others were having the same problem. By being able to network and share, not only do we find out that we are not alone, it isn’t just us, we can also share who it is we need to talk to in order make sure things get better.”
We work closely with professionals to help make processes mor inclusive for disabled families, recently rewriting the care needs assessment and holding meetings with NHS speech and language services to highlight how families are accessing services. This work is imperative to families to ensure they are treated fairly and can fully access the services they need.