ICPCN Global Youth Ambassador, 22-year-old Lucy Watts, works tirelessly to raise awareness of a number of important issues and conditions related to her condition, Ehlers-Danlos syndrome, as well as the value of palliative care support for children and young people. She has written a new blog in which she talks about her work as a Global Youth Ambassador for ICPCN and other charities and describes in exciting detail one most unforgettable day – 9 June 2016, when she was awarded an MBE at Buckingham Palace by His Royal Highness, Prince Charles.
About her work as an ambassador for ICPCN she writes, “It’s especially wonderful to be working with a charity working globally on a topic I am very passionate about: palliative care for children and young people.”
She relates how transformative palliative care has been in her own life and knows that she is fortunate to live in a country where such care is of a high standard and easily accessible. Regarding lack of access to similar services in other parts of the world, Lucy writes, “Many countries, especially those in the developing world, don’t have access to palliative care or even medications such as Morphine for children. So children are dying in great pain, suffering terribly and have no support for them or their families to help them cope with the condition and to have a good death. This needs to change. There are approximately 20 million children worldwide with a life-threatening, life-shortening or terminal condition who could benefit from palliative care, but many don’t have access to it. We need to get palliative care to all who need it.”
She goes on to say, “Since I experience good palliative care, I know the impact it can have on your life, the way it can completely change your life for the better, and the lives of your family members, and I know it will allow me to have a peaceful death, hopefully in a place of my choosing. Every child has the right to a good death, and a good life, and palliative care needs to be available to all children, regardless of age, location, religion or language, and no matter what life-shortening condition they have.”
Her blog describes her appointment as a Member of the Most Excellent Order of the British Empire (MBE) in the Queen’s New Year Honours list 2016 for her work and she writes in brilliant detail about a most unforgettable and moving experience on 9 June 2016 when she visited Buckingham Palace for her investiture and the presentation of her award from His Royal Highness, The Prince of Wales. About this honour, Lucy writes, “It is a huge honour to be appointed an MBE, especially given my young age, I’m only 22, and the fact that my period of work hasn’t spanned decades like many others. However, it’s highly unlikely that my life, and my work, will span decades, which makes it even more special to receive the Honour whilst I am at the peak of my work and able to enjoy being a Member of the Order. It is a huge honour to be recognised for my work.”
Lucy ends her blog with gratitude to all those who support her, who nominated her, the Cabinet Office for selecting her, the Queen for approving her nomination and to Prince Charles for the gracious way he presented the award and congratulated her on her work.
She hopes to continue to work as hard as she can to raises awareness of the 21 million children and young people globally who require palliative care and for the need for the need for appropriate medicines, such as morphine, to be made available in paediatric formulas in order to relieve pain and suffering. In true ‘Lucy’ style, she ends with the words, “I hope to play a part in relieving the suffering of children with life-shortening conditions globally, and in getting palliative care to all children who need it.”
This article was originally published on the International Children’s edition of ehospice.