On Tuesday, June 20, 2023, Wales’s two children’s hospices, Tŷ Hafan and Tŷ Gobaith launched a 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 25% between 2009 and 2019
- The number of young people aged between 0 and 26-years-old living with life-limiting conditions in Wales between 2009 and 2019 rose by almost 33%
- More than 50% 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.
Jayne Bryant MS, sponsored the launch event for the report which took place at 12 noon in the Pierhead Building, Cardiff Bay.
Other keynote speakers at the launch included the report’s authors Professor 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 included 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 a huge amount of pressure off an already very over-stretched NHS.
“We welcome the continued commitment from Welsh Government to support the palliative care sector. Of the £10m they provide for adult and children’s palliative care in Wales, children’s hospices Tŷ Hafan and Tŷ Gobaith receive just under £1m per year, i.e., less than 20% of their care costs. More than ever, this reinforces the need for a sustainable lifeline fund so that we can recruit and retain professionals to enable us to reach the increasing number of children (as evidenced by this report) requiring our hospice services.”
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 we provide will need to adapt to keep up with the increasingly complex conditions that children are now living with.”
Eluned Morgan, Welsh Government Minister for Health and Social Services, said: “This is a really important report, providing Wales specific data. I look forward to continuing to work with hospices, families and the NHS to ensure children with life-limiting conditions and their families have access to the services and support they need.”
You can read the full report by clicking on the link below:
Our family stories
As ever, the children and families we support are at the heart of everything we do. For the launch of this report we would like to say a massive thank you to the following families for sharing their stories with us and supporting us in person at the Pierhead Building in Cardiff Bay where the launch event took place.
Read their stories below:
‘Little monkey’ Bedwyr lives with his family in Llanrwst. Read Bedwyr’s story here.
Welsh International Boccia player and USW graduate Tom works for Disability Sport Wales and lives in Cardiff. Read Tom’s story here.
When Dylan’s wife Teresa died suddenly, he became daughter Keira’s primary carer 24/7 at their home in Welshpool. Read Kiera’s story here.
Youth activist Seth from the Vale of Glamorgan is the first wheelchair user to take a seat in the Senedd. Read Seth’s story here.
Hope House Tŷ Gobaith is ‘a massive breath of fresh air for me and Myles’, says Georgia, who lives in Holywell with her son. Read Myles’ family story here.
At Tŷ Hafan, Cai could could be himself, says mum Micaela, from Cardiff. Read Cai’s story here.
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