We are funding the new Youth Manager post at this incredible Charity so that services for children and young people living with heart muscle disease can reach even more people who are affected.
This is something that means so much to us. One of our main objectives is to help young people and their families who are affected by genetic heart conditions, cardiomyopathies being one of the largest groups.
The objective of Max’s Foundation and Cardiomyopathy UK is to deliver services that are appropriate to a child or young person’s cognitive understanding via website and hardcopy as well as providing a safe space for them to learn more about their condition and address key psychological and psychosocial aspects of their health. Empowering young people to know more and live well with their condition is paramount to us.
The services for children and young people are contributed and shaped by Cardiomyopathy UK’s CYP&YA (Children, Young People and Younger Adults) Panel which is comprised of twelve young people (youngest is 16, eldest is 25) all of whom have personal experience of cardiomyopathy.
Our youngest trustee, Molly, Max’s sister, is also a member of the Panel. As a group they have highlighted a number of issues that are pertinent to the overall charitable objective of enabling children and young people (CYP) affected by cardiomyopathy to live healthy, happy and productive lives.
These issues include working more closely with cardiac clinics nationally to improve transition from paediatric to adult care, raising awareness within the public arena of the needs of affected CYP and informing educators and employers about the condition, in particular the restrictions it places on people physically and emotionally.
The Panel are committed to making real change for children and young people through the charity and to expand existing services which would see children, young people and younger adults supported at every level.
The Panel have a number of credible ideas for service creation, expansion and improvement regarding services for children and young people and the charity is keen to ensure the energy of ideas and momentum is realised.
Cardiomyopathy UK currently runs an in-clinic service which sees trained volunteers attending cardiomyopathy clinics at a number of hospitals. These volunteers offer vital support often to people who have just been diagnosed by normalising the condition, giving information resources to help people understand the condition and encouraging them to attend their local Cardiomyopathy UK support group.
We want to be able to recruit, train and provide volunteers to attend GOSH, St Bart’s, the Brompton, Birmingham Children’s Hospital and all hospitals that see children transition from paediatrics to adult care. We also want to cement our networks with all paediatric and adolescent cardiac care providers nationally to promote our work and the needs of CYP living with cardiomyopathy.
We would look to increase our helpline capacity to ensure a greater diversity of younger peer volunteers who are trained to speak with and support CYP.