CHAS has published new research which shows the number of babies, children and young people in Scotland living with a life-shortening condition is increasing. In response, the charity has unveiled its ambitious three-year plan setting out how they will meet the growing need for their care.
The Children in Scotland Requiring Palliative Care (ChiSP3) report, commissioned by CHAS and delivered by Public Health Scotland, provides an update on the demographics and phase of illness of children with life-shortening conditions.
Informed by this data, CHAS’s three-year plan sets out how the charity will reach all those that need their help; reinforcing the need for seamless care to ensure no family is alone in going through the terrifying heartbreak of seeing their child die.
ChiSP3 highlights that there are over 16,700 babies, children and young people (aged 0-21) across Scotland who are likely to die. This number is increasing as more children are living longer. Although more of these children are currently stable, prevalence on the rise across most areas of Scotland. At any time, about 2,000 children are unstable, deteriorating or dying and the report highlights that children with a life-shortening condition are 50% more likely to be living in a deprived area than an affluent one.
Rami Okasha, CEO of CHAS, said: "Knowing your child is going to die is the hardest thing. This data is absolutely key when it comes to informing how we provide palliative care for children and families across Scotland. Children and families tell us that they want CHAS to be there wherever they are and our new strategic plan sets out our burning ambition to help every dying child in every part of Scotland. It is built around the themes of care, people, growth and partnership.
"As medicine advances, more children with life-shortening conditions are living longer. They, and their families, need our care and support over a longer period – sometimes years. At the same time, we are supporting many younger children and babies. Half of the children who have died from a life-shortening condition in the last five years were under five and over a third (34%) were under the age of one.
"Our new plan aims to reach every family in Scotland that needs our help. Over the next three years, we will concentrate our efforts where we can have the most impact and that is amongst children who are least stable. Our nurses, doctors, and family support specialists will work across hospices, children’s homes and hospitals.
"To achieve our ambitious goals, we will work with a wider range of partners including the NHS, councils, hospices, charities, government and our dedicated volunteers. Together, Scotland will deliver world class care when needed most – in really tough days, at end of life, and after a child dies.
"Keeping the joy alive is at the very heart of everything we do at CHAS but the crisis is hitting us hard. It's putting more strain on our resources and making fundraising harder than ever so we really need your support to keep our services running and help us adapt our care to those who need it most."
Over fifty children, their families, and their brothers and sisters helped develop the CHAS plan alongside CHAS staff, volunteers and partners. This was to ensure the best experiences and outcomes for children who are suffering from a life-shortening condition and their families.
In light of the coronavirus pandemic, CHAS has innovated to meet the needs of children and families which has accelerated their ability to reach every child. CHAS launched the UK’s first virtual children's hospice at the beginning of the pandemic and is continuing to prioritise end-of-life and emergency care in hospice and children's homes and supporting the NHS and Scottish Government in this national effort. CHAS's support in hospitals includes one of the first hospital-based Supportive and Palliative Care teams in the Royal Hospital for Children in Glasgow which was launched last year.
You can download the both reports: