“The time I spent with (Lucy and her mother, Kate) was an inspiration to me,” writes Professor Downing. “It renewed my determination to fight for access to palliative care for children and young people.”
Lucy, 21, has Ehlers Danlos (ED) Syndrome, which affects the connective tissue resulting in weak and stretchy tissues and multiple organ failure. Her illness means that she spends most of her time in bed. She is fed straight into her bloodstream (TPN) via a Hickman line in her chest which goes into her heart and receives medication through this too.
In an article on the International Children’s edition of ehospice, Professor Downing details Lucy’s initial struggles to access palliative care services: since 2011, however, she has been supported by the J’s Hospice, an organisation dedicated to providing services for young adults aged 16-40, and one for which Lucy is full of praise.
Lucy’s quality of life has improved hugely since using the J’s Hospice services; along with good quality, practical care, she has also been able to talk openly and honestly with Kate about the future and her plans for the end of her life.
As well as being the first Global Youth Ambassador for ICPCN, Lucy is also an ambassador for Together for Short Lives. She writes a blog and regularly speaks at events to raise awareness for the rights of children and young adults with life-limiting conditions.