Next Welsh Government must make sure seriously ill children can access hospice respite breaks and 24/7 end of life care at home
- There is a shortfall of 240 community children’s nurses across Wales. This significant gap means that many seriously ill children are unable to access palliative and end of life care at home.
- Children’s hospices Tŷ Hafan and Tŷ Gobaith receive less than 10% of their annual funding from the Welsh Government – the poorest levels of government funding across the UK.
- Together for Short Lives is calling on the next Welsh Government to sustainably fund children’s palliative care in the community and in children’s hospices.
Together for Short Lives, the UK charity for children’s palliative care, is urging the next Welsh Government to address the postcode lottery faced by families of seriously ill children in accessing end of life care at home.
The charity is also calling on the parties contesting the Senedd elections to sustainably fund Wales’ children’s hospices if they form the next Welsh Government in May.
Published in April, Together for Short Lives’ new briefing ‘Ensuring every seriously ill child in Wales can access the palliative care they need: policy priorities for the next Welsh Government’ shows that a significant gap in Wales’ community children’s nursing (CCN) workforce. 240 CCNs are needed across the country.
CCNs play a crucial role in providing palliative care to seriously ill children, who need access to them 24 hours a day, seven days a week if they and their families choose to access end of life care at home.
Currently there only 43 CCNs out of the 283 CCNs needed in total across Wales, which means too many children and families are missing out on the care and support they need – when and where they need it. It also means that too many seriously ill children need unplanned, prolonged emergency hospital admissions, when their needs could potentially have been met at home.
As a result, the NHS is failing to achieve non-cash savings in the resources it spends on these children and their families.
The charity’s briefing also highlights how short breaks for respite– provided by Wales’ children’s hospices Tŷ Hafan and Tŷ Gobaith – are a lifeline for families of seriously ill children. The children’s hospices published report in November 2020  which powerfully describes the needs of families of seriously ill children in Wales. Of the 133 families who access children’s hospice services and who responded toTŷ Hafan and Tŷ Gobaith’s survey:
94% deem short breaks for respite provided by children’s hospice as essential.
85% said that Tŷ Hafan and Tŷ Gobaith were the only places they could get some much-needed rest, safe in the knowledge that their children were being looked after by care professionals.
75% said they needed more frequent and longer respite stays.
Families reported that hospice services were essential to the wellbeing of their child and the whole family and that hospices provided them with a ‘lifeline’.
Despite this, Tŷ Hafan and Tŷ Gobaith currently receive less than 10% of their annual funding from the Welsh Government. This funding means that children’s hospices in Wales currently receive the poorest levels of statutory funding across the UK 
Together for Short Lives is joining Tŷ Hafan and Tŷ Gobaith in calling on the next Welsh Government for a new sustainable ‘Lifeline Fund’ to achieve funding parity with the rest of the UK.
Together for Short Lives CEO Andy Fletcher said:
“Time is short for seriously ill children in Wales. Their families are often exhausted from providing round the clock care, with feelings of isolation now worsened by months of shielding at home during lockdown. They desperately need a break, which is why the next Welsh Government must set up a Lifeline Fund. This would help ensure Tŷ Hafan and Tŷ Gobaith receive sustainable funding to provide lifeline breaks to families across Wales. It cannot be right that the children’s hospices in Wales are treated differently to other vital services like them across the UK.”
“When seriously ill children reach the end of their lives, they and their families should be able to make a meaningful choice about where they receive palliative care. For families in Wales, too often end of life care at home is not an option because of a lack of on-call community nursing services that can provide manage symptoms at home, 24 hours a day, seven days a week. The parties contesting the elections must commit to addressing this during the next Senedd.”
Myra Johnson, Director of Communications and Engagement
James Cooper, Head of Public Affairs and Policy
07415 227 731