Launch of ground-breaking Children in Wales Requiring Palliative Care: Trends in Prevalence and Complexity 2009 – 2019 Report for Tŷ Hafan and Tŷ Gobaith Children’s Hospices

First ever report on trends within children with life-shortening conditions in Wales to be launched during Children’s Hospice Week 

Children’s Hospice Week this year runs between 19 to 25 June and on Tuesday, June 20, Wales’ two children’s hospices, Tŷ Hafan and Tŷ Gobaith will launch ground-breaking new report which explores trends within the population of children with life-limiting conditions in Wales in the decade from 2009 to 2019. 

The Children in Wales Requiring Palliative Care: Trends in Prevalence and Complexity 2009 – 2019 Report is the first piece of published research ever undertaken to look specifically at the trends within the population of children with life-limiting conditions in Wales. 

Key findings of the report include: 

• 1 in every 172 under 18s living in Wales has a life-limiting condition 
• The number of children living with life-limiting conditions in Wales rose by almost a quarter between 2009 and 2019 
• The number of young people aged between 18 and 26-years-old living with life-limiting conditions in Wales between 2009 and 2019 rose by almost a third 
• More than half of all deaths of children in Wales between 2009 and 2019 were deaths of children with life-limiting conditions 

The research underpinning the Children in Wales Requiring Palliative Care: Trends in Prevalence and Complexity 2009 – 2019 Report has been undertaken by a team from the University of York and funded by the Welsh Government through the National Programme Board for Palliative and End of Life Care.  

The Children in Wales Requiring Palliative Care: Trends in Prevalence and Complexity 2009 – 2019 Report will be launched at an event, sponsored by Jayne Bryant MS, in the Pierhead Building, Cardiff Bay on Tuesday 20 June between 12.00 and 14.00 to which representatives of the media are warmly invited. 

Other keynote speakers at the launch will include the report’s authors Dr Lorna Fraser (King’s College London) and Dr Stuart Jarvis (University of York) as well as representatives of families who access services from both Tŷ Hafan and Tŷ Gobaith. 

Other attendees will include key policy makers, health and care representatives and families who access hospice services.

Maria Timon Samra, Chief Executive of Tŷ Hafan Children’s Hospice, said: “We are very proud of this ground-breaking report, the first ever to look specifically at children with life-limiting conditions in Wales.  

“The Children in Wales Requiring Palliative Care: Trends in Prevalence and Complexity 2009 – 2019 Report shows just how important the services provided by Tŷ Hafan and Tŷ Gobaith Children’s Hospices are.  

“They are not only unique, holistic services for some of Wales’s most vulnerable children and their families who are facing intense health challenges and all that come with such challenges, but Wales’s two children’s hospices are also taking huge amount of pressure off an already very over-stretched NHS. More than ever this reinforces the need for a sustainable long-term funding solution from the Welsh Government.”  

Andy Goldsmith, Chief Executive of Hope House Tŷ Gobaith, said: “The trends identified in this ground-breaking report predict that demand for the services provided by Tŷ Hafan and Tŷ Gobaith is going to rise steeply. It also shows that that the type of services they provide will need to adapt to keep up with the increasingly complex conditions that children are now living with.” 

Here is a link to Bedwyr’s story – his mum Nerys will be speaking at the launch event: https://www.hopehouse.org.uk/blog/bedwyrs-story

The stories of two other families in the North Wales area who use Tŷ Gobaith are also case studies for this launch:

https://www.hopehouse.org.uk/blog/kieras-story

https://www.hopehouse.org.uk/blog/myles-family-story