Children's end-of-life care 'needs attention', a report says

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Boy in hospitalImage source, Thinkstock
Image caption,

About 1,054 children and young people required palliative care services in Wales in 2014 (image posed by model)

Children's palliative care in Wales needs more "strategic attention" by ministers and the NHS, a new report says.

The Welsh Institute for Health and Social Care said lessons of previous reports remained "largely unheard".

It said clinicians and service providers were working "against the odds" to address needs.

Health Minister Mark Drakeford is attending an event in the Senedd, external on Tuesday to launch the report.

About 1,054 children and young people required palliative care services in Wales in 2014.

Of these, it is estimated 10% died during the year.

Children 'not sufficiently supported'

One difficulty identified in the report was that children's palliative care services sometimes came under adult palliative care when decisions were made.

The report said much of children's palliative care is not about the final period of life but about helping children and families cope better with a series of conditions which may last many years.

Media caption,

Hannah Hicks' daughter Alice was born with a central nervous disorder and gets support at Ty Hafan hospice

The focus on end-of-life care means services are not sufficiently supporting the 90% of children requiring ongoing help, it said.

The University of South Wales report, commissioned by Welsh children's hospice Ty Hafan, makes recommendations including giving paediatric palliative care the same status as that for adults.

It also calls for a 24/7 telephone advice service for health professionals and to establish child-focused performance measures.

Though "considerable progress" has been made in recent years, the report claims progress now "seems to have stalled and needs new impetus".

Mr Drakeford said he welcomed Ty Hafan's commitment to working in partnership with the Welsh government to drive forward key improvements to palliative care for children and young people in Wales.