Regardless of how complicated a child’s illness is, a family will always strive for normality – it is human nature to do so.
For many, being ‘normal’ means children going to school, parents going to work and the family being together at home.
But the challenges of caring for a dying child are enormous.
The complexity and range of treatments that can be delivered at home have grown, and they continue to do so.
This is welcomed, of course, but it means the burden of medical support may come to rest upon the parent’s shoulders. Making them more nurse or doctor than mum and dad.
I am pleased the new NICE guidelines for ‘end of life care for children’ highlight the services that children and families need to deliver care at home.
Imagine you’re a parent being woken-up by your child crying in pain at 2am. There are several medicines you could give them to help, but you’re not sure which one will work best or exactly how much to give. You feel helpless and alone.
Having 24-hour access to specialists who can, over the phone if needed, guide you through the treatment options is something that would help you and your family tremendously.
At the moment many areas of England do not provide these services. A service that can be there in the middle of the night when families may need them most.
These issues I raise may seem trivial to some people. They’ll say a child in pain would be better cared for by a team of doctors in a hospital.
However, I believe services should support a child at the end of their life. They and their family, should be able to choose where to spend their final days and hours together.
Access to a 24-hour homecare team could be the difference between the child dying in their own home, in their own bed, surrounded by the things they know and the people they love. Or for them having to die elsewhere.
Hospices can offer a good alternative to home. They are a place that can feel like home, where the child’s pain can be managed, but it may not be the families’ first choice.
I am glad NICE have recognised the impact 24-hour home support can have, and that they have strongly recommend it is made available.