This year’s Children’s Hospice Week was from 13 – 20 June and focused on the incredible round-the-clock care provided to seriously ill children by families, professionals, children’s hospices and services across the UK.
The theme for the week, We Care 24/7, highlighted the fact that children with life-limiting and life-threatening conditions often have complex needs that require constant care and which can often place an enormous amount of pressure on families, carers and siblings. The role of the children’s hospice and hospice and palliative care services is to provide a much needed lifeline to these families by offering a wide range of services to lighten their load and allow families to make precious memories with their sick children.
An informative video was used to launch the week with a touching story told by her mum, Jenny, about her daughter Tilly May and the invaluable support she receives from Children’s Hospice South West. In the video she describes the round the clock care that Tilly May needs. “When I put Tilly May to bed she has another lot of medication and her feed will go on for twelve hours. It’s just non-stop. I’ll try to go to bed about 1am. But then I’m back up during the night when she’s having seizures. Every single hour, the slightest thing, I’m straight up. My biggest fear is not being there when the time comes. I just hope that Tilly May will pass away in my arms. I would never forgive myself if I didn’t get up that one time.”
Sam Allen, Communications Manager for Together for Short Live, reports that there were many activities that took place throughout the week, including a successful 24 hour social media campaign to highlight the nature of 24/7 care, launched by their Patrons, Simon Cowell of X Factor fame and popular UK television presenter and celebrity, Holly Willoughby.
With over 2,500 tweets and an overall reach of almost 20 million, the campaign proved to be a fantastic opportunity to highlight the vital services that are available to children and families.
The week was also supported by Her Royal Highness the Duchess of Cambridge who is a Royal Patron of East Anglia’s Children’s Hospices (EACH). She released the following statement:
“Around the clock support is crucial for children receiving palliative care. They and their families often need help every hour of every day, both in hospices and at home. As Patron of EACH, I have seen first-hand this remarkable and varied work and just how vital the support of staff and volunteers can be to the families of children with life limiting conditions. It has been wonderful to see the fantastic public support for Children’s Hospice Week over the last few days. Please continue supporting your local children’s hospice in whatever way you can.”
The national television, ITV This Morning, featured a 10 minute interview with a family whose daughter, Amber, has been diagnosed with infantile Batten Disease, a disease which affects just three children in the UK. The Jutla family are supported by the Pepper Nurses who provide a 24 hour Hospice at Home care service. Katrina McNamara (Director of Care at TFSL) was there to provide important information on palliative care and on Children’s Hospice Week.
A highlight of the week was Hero Friday – a day where everyone who supports Children’s Hospice Week is asked to dress up as their favourite hero. This day was also supported by celebrities such as Joanna Lumley, Dermot O’Leary and Rebecca Adlington.
The week also included a Parliamentary drop in event which was attended by 68 Members of Parliament.
To find out more about Children’s Hospice Week and the many activities, visit the Together for Short Lives website at www.togetherforshortlives.org.uk
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