2019/20 for us represented a year of being bold. We lobbied local MPs as part of a national movement across the children’s hospice sector to increase government funding, we implemented planned changes to our care service to align with our strategy of responsive care and, as the UK went into lockdown due to the COVID-19 pandemic, we bravely launched an emergency appeal.
We also saw a change to our Board of Trustees this year after long-standing Chair, Ken Hanna, retired from his role. We were delighted to welcome Andrew Coppel to the role in September; Andrew brings a huge wealth of knowledge and experience having held CEO and Chairman roles at numerous successful companies. On behalf of the charity, I’d like to thank Ken for his long and enormously valuable service to the charity.
Whilst this year was not without its challenges, our income increased by an incredible 31% from 2018/19 – this simply would not have been possible without the support of our local community. Whether you’re a donor, fundraiser, corporate partner or volunteer, thank you for helping us continue to provide vital care.
Nigel Harding, Chief Executive
Lobbying for change
In July, we held a special briefing at the House of Commons, to help lobby for fairer funding for children’s hospices.
Labour MP for Mitcham and Morden, Siobhan McDonagh, hosted the House of Commons briefing for MPs whose constituencies are served by Shooting Star Children’s Hospices. The meeting was attended by Sir Paul Beresford, MP for Mole Valley, Anne Milton, MP for Guildford, Baroness Sal Brinton, staff and trustees from Shooting Star Children’s Hospices, families who have used our palliative care services and healthcare professionals who refer children to our service, including Paediatric Palliative Care Consultant AK Anderson who also presented to those attending.
Nigel Harding’s address to the briefing was bold and stark, “Our services are unique, we are very good at looking after children with life-limiting conditions and those in need of end-of-life care. We offer them a chance to die with dignity. We also care for their families in their moment of greatest need. These services are not offered by the NHS – but we are having to make difficult decisions.
“When a child leaves an NHS hospital 100% of their care is paid for by NHS England, something happens in that ambulance ride to our hospices because when they arrive at our door only 8% of their care is covered by the government. The rest is funded by the generosity of the public – a foreign concept when you consider the care and support we provide is the same standard as that of the NHS.
“Our nurses and carers effectively reduce the demand on inpatient paediatric beds. That alone should convince funders that children’s hospices are crying out for fairer funding.”
Dr Richard Chavasse, Consultant in Paediatric Respiratory Medicine at St George’s Hospital who attended the meeting said, “We are seeing an explosion in the number of children who need these services. The NHS is under huge pressure. The support and care children receive from Shooting Star Children’s Hospices is vitally needed.”
Following pressure from across the children’s hospice sector, NHS England announced its intention to increase funding for children’s hospices to £25 million a year by 2023/24 as part of the NHS long term plan.
After being given the devastating news that their son’s cancer had returned, Alison and Warren spent a week at Shooting Star Children’s Hospices making memories they’ll cherish forever.
“When we were told Dylan-James had just two months to live, it didn’t feel right to lose him in hospital, so the other options were to take him home or to Shooting Star Children’s Hospices – it was actually my sister who said to go and see the hospice, because I just wanted to take him home. Dylan-James came with us when we visited Shooting Star House in Hampton and as soon as we walked in and I saw how happy he was that was enough for me, my decision was made.
“We went straight to the hospice from hospital and it was just amazing – not only did the care team look after Dylan-James, they looked after us and the rest of the family. They were like angels. We loved using all the facilities for that week, particularly the sensory room and the gardens. The care team also took hand prints to go on a bracelet, which means the world to me. At the end of the first week we took Dylan-James home for two days and the Hospice at Home team came out to check on us. He was so pleased to be at home, to see his toys and sit in the garden.”
Sadly, shortly after arriving back at Shooting Star House, Dylan-James died – less than a year after first being diagnosed and just weeks before his 4th birthday. “He just fell asleep in my arms next to his daddy,” explains Alison. “I cuddled him for two hours before we went to the Tranquil Suite. The lovely staff at the hospice had changed the bedding to his favourite superhero ‘Catboy’ and projected stars on the ceiling, which was so beautiful.
“Dylan-James was absolutely beautiful inside and out – happy, clever, funny, resilient and inspiring. He was like magic. We were told we would have two months with him, but it was only actually just over a week – we had that week at Shooting Star Children’s Hospices and what a precious week it was. We are heartbroken without him, but it’s amazing how the worst time of your life becomes such a treasured memory and it’s Shooting Star Children’s Hospices that made that possible. I can’t put into words how much of a lifeline they’ve been.”
Future plans for our care service
Due to the COVID-19 pandemic, our original plans for 20/21 have had to be reviewed and will continue to be reviewed as the impact of the pandemic unfolds. The priority will be ensuring that staff caring for children have the required skills to provide safe, up-to-date and evidence-based care.
1. Transform our model of care
• Fully embed the wide-ranging changes we make as a result of the COVID-19 pandemic
• Develop and implement a family advisory group to advise co-production of our services
• Undertake a full experience survey of our families and young people and implement the findings
• Embed the ethos of clinical medical care in a non-hospital setting
• Undertake additional communications with all statutory stakeholders to inform them of changes to our services and to ensure our new services meet their needs
2. Achieve NICE and other Quality Standards
• Implement actions from the Care Quality Commissioners inspection report
• Develop the role of non-medical prescribing within the Symptom Care Team
3. Build strong academic links and a research programme
• Strengthen our research capabilities and seek sponsorship funding to undertake research relevant to children’s hospice care
• Work with Children’s Hospices across London (CHaL) to undertake a study of fracture injuries in the population of children’s hospice users
4. Lead change, add value
• Deliver 500 nights of funded respite care after the COVID-19 crisis
• Develop and implement regional paediatric palliative care team projects in partnership with commissioners and stakeholders
• Work with Rainbow Trust to implement the joint community project providing holistic support to children and young people nearing the end of life
• Engage with and maximise statutory funding opportunities including the hospices grant, match funding projects and any additional opportunities