The Duchess, EACH’s Royal Patron, has shared her thoughts in a letter of support for Children’s Hospice Week this week (17-23 June), the national awareness week organised by the UK’s umbrella charity for children’s palliative care Together for Short Lives.
The theme for Children’s Hospice Week this year is Moments that Matter. It is hoped showcasing the moments that matter for children and young people with life-threatening conditions, and their families, will challenge the misconception that children’s hospices are scary places. In a recent UK-wide survey conducted by YouGov, a fifth (20%) of respondents said they did not know what children’s hospices do or what children’s palliative care means.
The Duchess’s letter reads: “It (Moments that Matter) aims to make the most of the very precious time that those using hospice services have. Throughout the week we will hear amazing stories from families facing the toughest of futures. I hope that they will inspire each and every one of us to similarly make the most of the time we have with our own families, by ensuring every moment matters and that we create memories that last forever.”
EACH is sharing the stories of five parents who receive its support at a photography exhibition in Ipswich, where the photos on display have been taken by the parents as a means of exploring what EACH and the word ‘hospice’ mean to them, and how that may have changed over time. The exhibition, called the H-Word, is being seen as an unprecedented and innovative attempt to address misconceptions, and has received positive feedback from other children’s hospices around the country. If well received in Ipswich, EACH hopes to take it on tour around the rest of East Anglia.
Among parents whose photos will be exhibited is Charlotte Markham, from Kesgrave, whose son Elliot sadly died after just a few hours in 2012.
Charlotte said: “When we went to look around The Treehouse (EACH’s hospice in Ipswich) it was a totally different experience to what we expected. We were made to feel that our son Elliot mattered, his life mattered, he was important, they would care for us and him. Our initial perception of what EACH was from the outside was so wrong.”
The Duchess became EACH’s Royal Patron in 2012 and her letter is the latest in a series of messages she has released since.
Graham Butland, EACH Chief Executive, said: “We know and the families we’ve supported know just how much of a positive difference children’s hospices can make, providing truly memorable moments of fun and inspiration, but there’s still a clear gap in the knowledge of many others. We often hear from families how they expected our hospices to be sad and dark places. That’s simply not the case, as Her Royal Highness knows from her visits to us, and it’s fantastic to have her continued support in raising awareness. Children’s Hospice Week is always a really important time of year for us and all children’s hospices across the UK, and I hope people will once again join the Duchess in championing the role they have to play. We’re very excited to be hosting the H-Word and hope it’ll go some way to addressing misconceptions in our region.”
For more information about Children’s Hospice Week, visit www.each.org.uk/childrenshospiceweek. For more information about the H-Word exhibition head to www.each.org.uk/thehword
The Duchess’s letter in full reads:
Children’s hospices provide vital sanctuaries for those experiencing the very toughest of times. They help families and carers build life long memories that are poignant, happy and often filled with laughter.
Whether through specialist play aimed at deepening relationships between children and their families, or through art and music therapy that helps young people express themselves and release their thoughts and feelings - the work of organisations like East Anglia’s Children’s Hospices can set a truly heart-warming example to us all.
They provide a lifeline to children and families for however long support is needed and I hope that others join me in thanking them as we shine a light on their work during Children's Hospice Week.
The theme this year is ‘Moments that Matter’. It aims to make the most of the very precious time that those using hospice services have. Throughout the week we will hear amazing stories from families facing the toughest of futures. I hope that they will inspire each and every one of us to similarly make the most of the time we have with our own families, by ensuring every moment matters and that we create memories that last forever.