Together for Short Lives

With Eid-al-Fitr fast approaching, we caught up with Martin House Children's Hospice’s Cultural Liaison Officers, Spiritual Care Practitioner Saarah, and a group of incredible mums in one of their monthly Chai & Chat sessions. The Cultural Liaison Officers organise events like the Chai & Chats, a bereaved mums’ group and the hospice’s annual Eid-Fest celebration, which is open to families of all faiths and none. In this video, you’ll meet mums Quainat, Sanam, Irtafah and Amreen who will be marking this very special time in the Islamic Calendar with their families, while also balancing the care needs of their seriously ill children. And to everybody celebrating the end of Ramadan soon, Eid Mubarak to you and your loved ones 🌙 💜

Come campaigning with us. This week, we went to Westminster to bang the drum for the families of seriously ill children. For children who aren’t getting the care they need, because our children’s palliative care sector just isn’t built to last. The care system is being undermined by workforce shortages, funding gaps and a lack of leadership and accountability. We know you know this all too well. Help us change this. Sign our open letter to the Prime Minister 👉 https://bit.ly/424x1jv

We are very sad that Eddie Farwell, Co-Founder and retiring CEO of Children's Hospice South West, has died. From founding Children’s Hospice South West alongside his late wife Jill in 1991, Eddie's leadership made a huge impact on the lives of seriously ill children and their families across the South West of England. He also made a significant contribution to the way in which children’s hospice and palliative care has developed across the UK. Thank you Eddie 💜 Our thoughts are with Eddie’s daughter Lizzy, their family and friends, all at Children’s Hospice South West and everyone across the children’s palliative care sector who knew and worked with him. Read Children’s Hospice South West’s announcement here https://lnkd.in/ecB-JDSe You can leave a tribute to Eddie here https://lnkd.in/ecFUgagu

Our chief executive Nick Carroll spoke recently to the European Association for Palliative Care for an article in their newsletter on embedding children's hospices in a networked approach across the UK. Nick told them that children’s hospices are a crucial part of the UK’s paediatric palliative care system, yet they are increasingly reliant on charitable donations due to a lack of sustainable government funding. We are calling for a more integrated model in which children's hospices are fully embedded within the broader health and care system. Read the full article here 👉🏼 https://lnkd.in/eYEegEfK

We’ve discovered something shocking 📢 Our new report reveals that seriously ill children's access to palliative care varies drastically depending on where they live. The causes? Workforce shortages‼️NHS funding gaps ‼️The UK's governments not holding NHS bodies and local councils to account‼️ Family life filled with precious memories should never depend on a postcode. Build a children’s palliative care sector that lasts by signing our open letter to the Prime Minister 👉 https://bit.ly/424x1jv

We’ve discovered something shocking 📢 Our new report reveals that seriously ill children's access to palliative care varies drastically depending on where they live. The causes? Workforce shortages‼️NHS funding gaps ‼️The UK's governments not holding NHS bodies and local councils to account‼️ Family life filled with precious memories should never depend on a postcode. Build a children’s palliative care sector that lasts by signing our open letter to the Prime Minister 👉 https://bit.ly/424x1jv

🌟 Speaker Spotlight 🌟 We are excited to introduce Dr Christine Mott as a speaker at our 2025 Children's Palliative Care Conference! Christine will speak about the use of mobile cold-sheets (techni-ice) in palliative care. 📅 7 – 8 May 2025 💡 Built to last: Towards a strong, sustainable future 📍 Hilton, Manchester Deansgate Haven't got your tickets yet? Secure your place here: https://lnkd.in/eErpqPFG

During her Spring Statement to the House of Commons earlier today (Wednesday 26 March), Chancellor of the Exchequer Rachel Reeves announced that the UK Government has decided to freeze the Universal Credit (UC) health element for existing claimants until 2029/30. For new claims, it will be reduced to £50 a week in 2026-27 and then frozen until 2029-30.     This follows the government's proposal last week to delay access to the health element of UC until the age of 22, a policy set out in its consultation paper 'Pathways to Work: Reforming Benefits and Support to Get Britain Working'. The UC health element is designed to provide additional financial support for individuals with health conditions or disabilities that mean they can't work, which will include many young adults who have been living with life-limiting conditions since childhood.      The government has also published the outcome of its work to assess the impact of its proposed welfare reforms. The government estimates there will be an additional 250,000 people (including 50,000 children) in relative poverty compared to the baseline projections.     Coming on top of cuts to the Universal Credit limited capability for work related activity component for new claimants – and the decision to delay access to the health element of Universal Credit until the age of 22 – today’s news is a further blow to seriously ill young adults who are unable to work because of a life-limiting or life-threatening condition.    Read our reaction to today’s news here 👉🏼 https://lnkd.in/e5Jf7fbt

This afternoon, we went to Westminster to bang the drum for the families of seriously ill children. For children who aren’t getting the care they need, because our children’s palliative care sector just isn’t built to last. It is being undermined by workforce shortages, funding gaps and a lack of leadership and accountability. Family life filled with precious memories should never depend on a postcode. That's why we need governments across the UK to act now. In England, the NHS 10-year plan provides the perfect opportunity to fix this. Your opportunity to get involved will be here soon. Watch this space.

Have your say on the future of palliative and end of life care The Commission on Palliative and End of Life Care is calling for written evidence to inform its work. If you work in the sector, conduct relevant research or have lived experience, this is your opportunity to help shape future policy and practice. By sharing your insights, you can ensure that the realities of care provision, the challenges faced and the changes that are needed are fully understood. Submit your evidence by Friday 28 March here: https://lnkd.in/edx7F8Q3 Please share this with your colleagues and networks - every voice counts!