Seriously ill children need care around the clock

Children with life-limiting conditions and their families are not getting the care they desperately need because there are not enough professionals with the skills and knowledge to provide it.

That's why we are today calling on the government to address major workforce gaps so that all children with life-limiting conditions can access around the clock care when and where they need it.

A bereaved mum, Kathy, said "I don't think we would have managed without all the carers that came into care for our son, and give us the respite we badly needed. We were lucky to receive good care, but believe me it was very hard fought."

It is recommended that a minimum of 20 community children’s nurses (CCNs) are needed to provide vital care to an average sized district of 50,000 children. However just 17 CCNs were due to qualify in 2014/15 across the whole of the UK, leaving a massive void in support.

We are hosting a special event at Westminster today (17 November) to ask parliamentarians to take action to ensure children and families have access to a range of children’s palliative care services 24 hours a day, seven days a week. MPs are being urged to take action to help bring about 24/7 children’s palliative by pressing the government, commissioners and local workforce planners to ensure there are enough people with the right skills and experience to care for seriously ill children in their constituencies.

 Barbara Gelb OBE, chief executive, Together for Short Lives, said:

“Ministers can help families overcome the barriers to 24/7 services by investing in children’s palliative care in the Spending Review. More education and training places for community children’s nurses and a fairer and more sustainable statutory funding system for children’s palliative care would help families access the round the clock support they so desperately need. Time is short for these children and families and I call on the government to prioritise Together for Short Lives’ recommendations as it finalises its Spending Review decisions.”

Stuart Andrew MP, Conservative MP for Pudsey, said:

“This government has made a seven-day NHS a priority. Where they are offered, frontline children’s palliative care services available at evenings and weekends can provide better outcomes for children and their families by offering support at home and in the community. 24/7 care also often means that children do not have to be taken into hospital unnecessarily. By delivering round the clock children’s palliative care, the NHS can work smarter for children with life-limiting conditions.”


Find out more about Together for Short Lives’ work to make care around the clock a reality for children and young people who are unlikely to reach adulthood at or join in the conversation using #carearoundtheclock.

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