An organisation dedicated to supporting young adults with complex conditions and their parents and families, campaigning for change and working directly with organisations, services and public bodies to improve care and support for these young adults. After discussing the lack of support with her hospice nurse, a discussion they have had repeatedly over the 6 years Lucy has been supported by the h
ospice, Lucy decided she needed to do something about it. After many months of work behind the scenes setting it up, it is finally ready to be launched. The Young Adult Complex Condition Alliance, YACCA (pronounced yacka) is set up to support young adults and their parents and family members, doing so through peer support, information and resources and signposting to other available sources of support, as well as to campaign on issues affecting these young adults and to give them a voice in society. We also work directly with services, organisations and public bodies to improve recognition, understanding, care and support for these young adults. We offer services including consultancy, public speaking, written work and media commentating. YACCA is very much user-led. YACCA is currently set up as an unincorporated association, as we feel that we do not want to register as a charity or Community Interest Company until such a time as we know what the biggest demand on our services are and thus what legal setup serves the best purpose, as both have financial implications. We do not want to pigeonhole ourselves and limit our abilities. At a later date, we will formally register as a charity or CIC dependent on which best suits the demand on our services and needs of our users. You can find out more on our website, www.youngadultcca.org.uk. Our Founder:
Lucy is 23 years old and has a degenerative neuromuscular disease, which was misdiagnosed as Ehlers-Danlos Syndrome until 2016. She has multiple organ failure and complications affecting her gastrointestinal tract, bladder and kidneys, lungs, bones, spine, metabolic system and immune system. She is life-limited, being under palliative care since she was 17 and has a poor prognosis. However, Lucy does not let her conditions get in the way. Despite being wheelchair dependent, although forced to spend a lot of time in bed, being hooked up to intravenous drips at least 21 hours a day, covered in bags and tubes and cared for by intensive care nurses, Lucy is a very active Patient Leader and patient advocate. She holds positions within seven charities, including as Trustee, Ambassador and board member, in addition to founding YACCA. She also has a successful blog, Lucy's Light. Lucy has a lot of experience within the charitable, health and social care sectors, due to her work with many charities and organisations as well as her first hand experience of health and social care and the issues facing young adults with complex needs. Lucy was appointed Member of the Most Excellent Order of the British Empire (MBE) in the 2016 New Years Honours, aged only 22, for services to Young People with Disabilities.
