Children’s Hospice Association Scotland (CHAS) demands children's hospice services receive the same funding as adult services
Kids living in Scotland with life shortening illnesses deserve better care according to two major charities.
Children’s Hospice Association Scotland (CHAS) and Together for Short Lives have both launched campaigns for improvements to palliative care for babies, children and young people.
Over 15,000 people under the age of 25 living in Scotland have a life shortening illness with many of those having extremely complex and unpredictable conditions, requiring round the clock care, seven days a week.
In its first ever manifesto document, Better Care for Children with Shorter Lives, CHAS is calling for the new intake of MSPs to work together to ensure that every child who needs its services has the opportunity and for services offered to better suit families.
Crucially it wants the next government to commit to meeting 50% of the agreed running costs at its hospices, the same as it provides to adult hospice services. Currently it receives just 25% of its running costs.
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
CHAS chief executive Maria McGill says more reliable funding will allow the charity to reach and support more of the two thirds of babies, children and young people who die each year in Scotland without access to specialist palliative support.
She said: “Research in 2015 has shown a far higher number of babies, children and young people in Scotland aged 0-25 years have life-shortening conditions than previously estimated. The number is more than 15,000 and includes those with oncology and neurology diagnoses, as well as with congenital abnormalities.
“To reach this significant group 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.”
Together for Short Lives, a UK charity with over 900 members from individuals to organisations, says at present, families are struggling 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 its Transforming the Lives of Children with Life-shortening Conditions manifesto 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 and enhanced access to short breaks for children and their families.
Chief executive Barbara Gelb OBE said: “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.
"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.”
