The charities are both keen to outline the improvements they feel need to be made in order to provide better care for children in Scotland with life-limiting conditions, whose number is estimated at over 15,000. Elections for the Scottish parliament are on 5 May 2016.
The Together for Short Lives document – ‘Transforming the lives of children with life-shortening conditions: policy priorities for the next Scottish government’ – includes six specific recommendations for parties to include their manifestos.
Among these are calls for fair and sustainable funding for providers of hospice services (including CHAS), better identification of those who can benefit from palliative and end of life care, a legal requirement for local authorities to provide short breaks for families caring for disabled children, and the appointment of a lead children’s palliative care clinician at each health boards across the country.
The CHAS document – ‘Better care for children with shorter lives’ – touches on similar themes, adding that parties should commit to “culturally competent” palliative care being available to children and young people from all ethnic backgrounds and that “future development of palliative care services in Scotland [should] ensure priority access to services for children and young people from areas of high deprivation”.
“CHAS has a proud track record of caring for these age groups and is committed to delivering services where and when they are needed,” the charity’s chief executive, Maria McGill, wrote in her foreword to the document.
“To do that we need to work with politicians and policy makers to ensure that CHAS has the right support from our partners across the NHS and local authorities to meet the opportunities and challenges that lie ahead. That means ensuring that every child who needs access to CHAS services has the opportunity, that families have the widest range of support that meets their individual needs, and that CHAS is sustainably funded and resourced.”
Together for Short Lives’ chief executive, Barbara Gelb, added: “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.”