The EATC4children is fully supported by the GenerationR Liverpool YPAG, Rheumatology focused support groups, and Young Patient Research Ambassadors (someone who promotes health research from a patient point of view):
Young Patient Research Ambassadors (PRAs)
The EATC4Children has two PRAs, Sophie Ainsworth (Young PRA with Lupus) and Simon Stones (Young PRA with JIA) who work closely with the patient and public involvement and engagement (PPIE) Manager, Youth & Family Participation Officer and GenerationR Liverpool Young Person’s Advisory Group (YPAG). Sophie and Simon continue to be at the forefront of patient involvement and engagement across the UK and internationally.
Sophie has received a number of awards in 2018, notably the "Points of Light" award received from the Prime Minister. She was also named as one of 50 New Radicals by Nesta & The Observer for her work as an ambassador for young people affected by Lupus and other invisible illnesses.
Simon Stones is connected to the EATC4Children through the GenerationR Liverpool YPAG as a mentor. He has presented his PhD project for the advice of our members and regularly supports our events. He is invaluable in his expertise in graphic design and production, designing many of our promotional materials. In October 2017 he received the international WEGO Health Award – Healthcare Collaborator Patient.
The group provides a forum for young people to learn about, and comment on, various aspects of paediatric research and clinical trials. The group helps researchers to improve the development and delivery of health research. The GenerationR Alliance YPAGs meet every six weeks. The Liverpool group was set up in 2006 and currently has around fourteen young people aged between 13-19yrs old. Members either have experience of taking part in health research, have experience of living with a condition or disability, or have a general interest in learning about health research. To get involved: http://generationr.org.uk/liverpool/
In late 2017, the Alder Hey CRF Parents & Carer’s Research Forum was established, supported by the EATC4Children. It is made up of parents of children with a variety of chronic conditions, including rheumatological conditions. The forum has continued to grow and has developed links with many groups in the Liverpool area and the University of Liverpool. The parent and carer members are supported by educational training, which allows them to learn more about clinical trials and contribute at meetings.
EATC4Children related engagement activities
Sammy Ainsworth (Youth & Family Participation Officer) supports events planned with the wider EATC4Children team. This has included events for World Kidney Day, Lupus Awareness activities, presentations at Lupus UK AGM (this resulted in a blog focused on what it means to be a parent of a child with Lupus) and involvement with lupus research at Alder Hey CRF.
Sammy has established close links with Lupus UK and is now a trustee, planning charity awareness and promotional events. In September 2018 Sammy (in her role as a parent of a child with Lupus) was elected as a board member for the European Network of Arthritis in Children (ENCA). She is currently part of the project group that is planning the first ever World Young Rheumatic Diseases Day (WORD) on 18th of March 2019. This is to raise awareness that young people suffer from rheumatic diseases across the world and are often overlooked.
In August 2018, both the Alder Hey CRF YPAG and Parents Forum began to work with Laura Whitty of the EATC4Children to help design an animation for the EATC4Children website. This animation will explain the work of the EATC4Children with an easy to understand format and dialogue. The YPAG and parents forum have helped to provide ideas and feedback on all aspects of this project, from colour and style to content and structure.
The EATC4Children is linked to the International PPIE community via the International Children’s Advisory Network (iCAN), which is a global consortium of Youth Advisory Groups (YPAGs) working together to provide a voice for children and families in paediatric medicine. During this reporting year, Jenny Preston and both PRAs attended International Summits (Washington, Barcelona, Florida and Edinburgh). This developed additional links with our international young people, partners and key stakeholders, including pharmaceutical companies and charities.
Sammy regularly attends international conferences (for example PRES 2017; EULAR 2018) which allows her to promote the work of young PRA’s and PPIE activities within the EATC4Children.
Patient led projects
"Raising Awareness of Invisible Illnesses in Schools and Education" (RAiISE) is a new charity founded by Sophie Ainsworth. RAiISE is developing education resources and seeks to empower and support young people with invisible illnesses. The RAiISE Trustee Board is now in its second draft of a resource pack aimed at schools in the UK. Plans to pilot the pack in Spring 2019 are underway. Links have been established with the Department of Education and Liverpool Schools Parliament to inform the development of the pack and to aid dissemination and impact.