Together for Short Lives, the UK charity for children with life-shortening conditions, is calling on the parties in the Scottish Parliament to commit to better palliative care for children in their upcoming election manifestos.
There are estimated to be over 15,000 children and young people with life-shortening conditions in Scotland. Many of these children have extremely complex and unpredictable conditions, requiring round the clock care, seven days a week.
Ahead of the Scottish Parliament elections in May, Together for Short Lives is calling on political parties to commit to improving the provision of children’s palliative care. It has set out the manifesto commitments that each party could make to achieve this in its new document ‘Transforming the lives of children with life-shortening conditions’.
Children’s palliative care is provided by the family and supported by professionals from a range of services, including community children’s nursing teams, local authority children’s services and children’s hospices. These services provide a lifeline to families that are caring 24/7 for children with life-shortening conditions, but they still have to fight to access the care and support that they need. At present, families in Scotland struggle to access the volume and frequency of care and support that they need to enable them to care for their child.
Among the gaps highlighted in the new document are the need for:
- fair and sustainable funding for children’s palliative care providers
- better identification of those who can benefit from palliative and end of life care
- enhanced access to short breaks for children and their families.
Commenting on the new manifesto asks, Together for Short Lives’ Chief Executive Barbara Gelb OBE, said:
“Our six manifesto asks challenge the next Scottish Government to transform the lives of children with life-shortening conditions and their families. The 15,000 children and young people, who may not survive into adulthood, deserve to be able to access services that are sustainably funded and staffed by those with the specialist skills and knowledge required to support them.
We want the Scottish Government to increase the availability of short breaks in and outside the home. These breaks allow parents time to spend time with each other, with their other children, or simply to take a rest from caring around the clock.
"Time is short for these families and it is vital that all parties set out how they will act to improve children’s palliative care in Scotland so that these families can make the very most of their short time together.”Barbara Gelb
Time is short for these families and it is vital that all parties set out how they will act to improve children’s palliative care in Scotland so that these families can make the very most of their short time together.
We look forward to working closely with the next Scottish Government to make these aspirations become a reality for the 15,000 children in Scotland with life-shortening conditions.”
‘Transforming the lives of children with life-shortening conditions: policy priorities for the next Scottish Government’ is available to download from: http://bit.ly/cpcScot
Tracy, mum of Louis:
“Accessing a children’s hospice service has been a life-line for us, particularly in the early days; it provides us with an opportunity to have a short break in facilities that enable you to really relax for a short while and recharge our batteries.”
You can read more about Tracy and Louis’ story in our manifesto.