A strong network for children's hospices: better care through collaboration.
Children’s hospices in the UK play a vital role in supporting families of children with life-limiting and life-threatening conditions. While traditionally associated with end-of-life care, hospices today provide a broad range of paediatric palliative care, including respite, symptom management, and bereavement support. With increasing demand and financial challenges, a networked approach—where hospices work closely with hospitals, community care providers, and policymakers—is more important than ever.
A parent’s perspective: navigating coordinated care
Emily Tammam, whose daughter Neve received hospice care for over two years while living with brain cancer, highlights the importance of a well-coordinated system. “Our care was so joined up, like a network, with our hospice and CCN (children’s community nurses) team at the centre. This was incredible,” she recalls. “I only needed to call one team and they coordinated with the others behind the scenes, making sure everything ran smoothly without me having to chase all the different teams.”
However, Emily also notes some gaps in the system, particularly in private care agency support. “While the hospice and children’s community nurse team communicated well, the home care agencies were often disconnected from the wider network,” she explains. A key improvement would be appointing a single coordinator to oversee all aspects of care, reducing the burden on parents who often have to manage multiple services themselves.
A collaborative approach to paediatric palliative care
Dr. Laura Nohavicka, a paediatric palliative care consultant with experience at both Great Ormond Street Hospital and Helen & Douglas House, emphasizes the importance of collaboration across care settings. “A networked approach keeps the child at the centre, no matter where they receive care,” she explains. “It also allows specialist palliative care resources to be shared across a larger area, ensuring more children and families receive comprehensive support.”
According to Dr. Nohavicka, this model not only improves care quality but also makes better use of available resources. Paediatric palliative care is a specialized field with limited experts and facilities. A networked model enables specialists to share knowledge across locations and work together to create the best care plans for children with complex medical needs.
Despite its benefits, implementing a networked model comes with challenges. Dr. Nohavicka stresses the need for sufficient funding and clear governance structures to ensure safe and seamless care. “Building a well-functioning network requires investment in collaboration, training, and technology,” she explains. “Additionally, differences in regulations between the NHS, hospices, and private care providers can create obstacles when trying to establish consistent guidelines and protocols.”
Another challenge is access to medication, particularly in urgent situations or outside standard working hours. “Getting the right medication quickly can sometimes be difficult, especially when a specialist pharmacist isn’t available,” Dr. Nohavicka explains. She also notes that general practitioners and other primary care providers often have demanding schedules, making it difficult for them to coordinate with specialist palliative care teams.
Despite these challenges, multidisciplinary team meetings and virtual collaborations have greatly improved care coordination across large regions. “Online meetings allow teams to work more efficiently, share information, and make quicker decisions,” says Dr. Nohavicka. “This has been especially beneficial in rural areas, where specialized care isn’t always readily available.”
System-wide challenges and the role of policy
Nick and his team at Together for Short Lives provide a broader perspective on the structural issues facing children’s hospices. “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,” they report. Despite a recent government commitment of £26 million for children’s hospices in 2025/26, funding disparities across regions continue to create inequities in care access.
To address this, Together for Short Lives advocates for a more integrated model in which hospices are fully embedded within the broader healthcare system rather than operating separately. This includes pushing for policy changes that hold Integrated Care Boards (ICBs) accountable for providing adequate funding and ensuring a minimum standard of care across all regions. “Currently, only a third of local areas meet the required standard for 24/7 paediatric end-of-life care at home,” the team notes, stressing the urgent need for reform.
Best practices and lessons for other countries
Several UK-based models demonstrate the benefits of a networked approach. There are a number of collaborations between services offering joined-up 24/7 support for children and their families. These approaches vary across different regions, depending on the local population needs and available services
Additionally, several regions in the UK have introduced 24/7 support lines for clinicians, allowing general practitioners, hospital teams, and community nurses to access real-time specialist advice. These services improve symptom management, reduce unnecessary hospital admissions, and provide families with reassurance that expert help is always available.
The future of children’s hospices in the UK
Looking ahead, the integration of hospice services with the NHS and community care will be key to shaping the future of paediatric palliative care. Telehealth, AI-driven symptom management, and digital platforms are expected to play an increasing role in expanding hospice support to more families. However, none of these advancements will be possible without sustainable funding and investment in the workforce.
Ultimately, as Emily Tammam points out: “It’s not about who provides the care, but how well it is coordinated. Gaps and overlaps in services can add stress to families who are already facing unimaginable challenges.” A truly networked approach—one that prioritizes integration, funding equity, and collaboration—will be essential to ensuring that every child with a life-limiting condition receives the compassionate and comprehensive care they deserve.”
*The main photo of this article shows Neve Tammam, painted by her mother, Emily Tammam.