One of the aims of Children’s Hospice Week is to raise awareness of the services available to families caring for children and young people with life-limiting and life-threatening conditions.
In her most recent blog post, Lucy explains: “Being life-limited and knowing other life-limited children and young people and their families, I know how effective good children’s palliative care is. Every child who needs it should have access to palliative care, regardless of age, location, race or religion.
“Palliative and hospice care, contrary to the public’s expectation, is not just about dying; it’s about living, too. Living well and with quality, and then it extends to the end of life care, to help those have a good death, and to bereavement support for the grieving family. You see, children’s palliative and hospice care isn’t just about the individual child/young person who is life-limited, life-threatened or terminal; it’s about their family and loved ones too.”
Lucy, who is 21, also describes the support she has received from The J’s Hospice and Jacksplace, part of Naomi House, which cater specifically for young adults.
Lucy describes these young adult-specific hospices as “wonderful, vibrant places to be and are so much about living,” and how they focus on independence and the specific needs and desires of young people, while still sharing the “positive, quality of life, fun and respite aspects of children’s hospices.”
Making every moment count
The focus of this year’s Children’s Hospice Week is making every moment count, and as part of the awareness week, Lucy has listed her top five moments:
- Giving a speech in Parliament on behalf of Together for Short Lives. “Palliative and hospice care has allowed me to use my experiences and knowledge to be a voice for others, especially those who are unable to speak for themselves and to enlighten the public, professionals and commissioners alike, as well as to make a difference.”
- When Lucy and dog Molly won the ‘Friends for Life’ award at Crufts.
- Being asked by her main consultant, Professor Aziz, to continue being a positive role model for other Ehlers-Danlos and digestive condition sufferers.
- Speaking at an event on children and young people’s health, and being thanked by a parent for her work in speaking and fighting for other children and young people who may not be able to speak for themselves.
- Meeting wonderful people and making friends, through her illness and charity work. “I have had some incredible experiences and grown as a person in ways that would have been inconceivable had I not been unwell.”
Get involved in Children’s Hospice Week by sharing a memorable moment on social media, using the hashtag #momentscount, follow Together for Short Lives on Twitter and Facebook, and support your local children’s hospice.