Families caring for children with life-limiting or complex medical conditions must seek urgent medical support if their child becomes unwell

UK children’s palliative care charity, Together for Short Lives fears that families caring for vulnerable and seriously ill children may delay seeking emergency medical care for their child due to fears around coronavirus and self-isolation.

The charity is hearing that some worried families are presenting far too late to A&E with serious consequences for their child. The charity stresses that these are children presenting with medical issues connected to their underlying condition, rather than COVID-19.

In the main children with complex and life-limiting conditions won’t die of COVID-19, but it would be a tragedy if they die because they do not receive help for treatable complications of their underlying condition.

Together for Short Lives is sending a clear message to families caring for very sick children, to trust their own judgement, and if their child has worrying symptoms to seek medical care immediately rather than waiting until their child becomes more seriously unwell.
If parents have serious concerns about their child’s health they should contact the GP and not be afraid to use the paediatric emergency department when it is required.

Dr Hilary Cass OBE, Chair of Together for Short Lives said:
“We know that everyone is trying to do the right thing by staying at home during the coronavirus crisis. However, we are very worried parents caring for children with life-limiting conditions might be too frightened to seek urgent medical help until it’s too late. The impact of this will be devastating and we’re already hearing that sadly children have died as a consequence.

I’m sending a very clear message to every family caring for these children. You know your child better than anyone else, and if you think your child is unwell or deteriorating you must seek medical help. Doctors will want to make sure that your child is treated before their condition deteriorates.

I stress that child deaths from COVID-19 are very rare, most vulnerable children won’t die of COVID-19, but we must do all we can do stop them dying unnecessarily of their underlying condition.”

Whilst it’s vital that families seek help is their child becomes unwell, it’s important that people shouldn’t present at A&E with minor ailments.


As a children’s and young people's hospice, every decision we take is informed and guided by the needs of the children and families we support. In line with the latest advice from Public Health England in mind, we are restricting access to the hospice to only those who are receiving or delivering services to our children, young people and families, or providing essential services.

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