Children with life-limiting conditions on the rise in Scotland, study finds

Categories: Care, Featured, and Research.

The number of babies, children and young people in Scotland living with a life-shortening condition is increasing, new research from Children’s Hospices Across Scotland (CHAS) has found.

The report, commissioned by CHAS and delivered by Public Health Scotland, highlights that there are over 16,700 babies, children and young people (aged 0-21) across Scotland living with a terminal or life-limiting condition. This number has increased over the past decade as medical advances mean that more children with life-shortening conditions are living longer.

Although more of these children are currently stable, prevalence of life-limiting illnesses is 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 per cent more likely to be living in a deprived area than an affluent one. Babies under the age of one are significantly affected. 34% of the children who died in the last five years from a life-shortening condition were under the age of 1. These babies have particular care needs that require support from neonatal palliative care.

Meeting the growing need for care

In response, the charity has unveiled a three-year plan setting out how they will meet the growing need for their care, including how they will reach all those who need their help, and reinforcing the need for seamless care so that families are not alone while going through the heartbreak of seeing their child die.

Over fifty children and their families helped develop the CHAS plan alongside CHAS staff, volunteers and partners. This was to ensure the best experiences and outcomes for children who live with a life-shortening condition and their families.

Helping every dying child in Scotland

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 per cent) 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.

Working in partnership

Shortly after the COVID-19 pandemic began, CHAS launched the UK’s first virtual children’s hospice, and is prioritising end-of-life and emergency care in its hospices and in children’s homes while supporting the NHS, local authorities 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.

“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” Rami added. “Together, Scotland will deliver world class care when needed most – in really tough days, at end of life, and after a child dies.

For more information visit CHAS

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