I’ve decided to start a new blog to share my personal journey and experiences at a difficult time in our lives. You can find it at: www.lucyslight.co.uk The reason for this new blog is a recent change in my health.…
This week it has been Dying Matters Week 2019; 13th-19th May. The theme this year was “Are We Ready?” and what a great theme it is, as we really aren’t ready and we need to be. Dying Matters Awareness Week…
This week it’s #OpenUpHospiceCare week, run by Hospice UK. A successful campaign that seeks to break down myths surrounding hospice care, raise awareness of the amazing work of hospices and to secure support for hospices and encourage communities to get…
Recently two people got in touch with me and asked me a question about my thoughts on the future of hospices and hospice care. I spent about 2-2.5 hours thinking, brainstorming, and writing everything down in an email response. However,…
Charlie Gard. A little boy whose care has polarised the world. A little boy with a severe condition called infantile encephalomyopathic Mitochondrial DNA Depletion Syndrome. He sadly passed away last week. His doctors for months had wanted to remove his…
It’s Children’s Hospice Week this week (23rd-29th May 2016). It’s an annual week-long event and the aim of children’s hospice week is to raise awareness of the services that support children with life-shortening conditions and their families. This year’s theme is…
I know this is slightly different and perhaps not my normal sort of blog post, but this is something that is very important to me. I have recently been appointed Global Youth Ambassador for the ICPCN (International Children’s Palliative Care…
I recently wrote a piece for the Courageous Parents Network about living with a life-limiting/life threatening illness, palliative care, end of life planning and quality of life. It's a brief summary of my journey since becoming ill, the support I've had,…
I look out of my windowAnd stare up at the skyI wonder if you’re up thereOh sweet old dog of mineIn blew just one white featherA sign as if to sayNever fear, for I am hereI never went awayFrom my…
I remember the day I first used a wheelchair. It was February 2008, and I hated it. I mean I really hated it. I didn’t want anyone to see me, so much so I refused to go out in case…