Built to Last? Help us secure the future of children’s palliative care

Dear Prime Minister

I am writing to you today not as a concerned citizen, but as a bereaved mum who had to fight to get her son the care he needed at the end of his life. I am writing to ask that you review the way that children’s palliative care is funded. Because right now, the system is failing thousands of families like mine.

My son Oliver was diagnosed with an aggressive brain tumour in December 2022 at the age of 10. In September 2023, following radiotherapy, chemotherapy and a successful surgery, his tumour returned, and we were given the devastating news that there were no further treatment options to cure him.

We suddenly had to pivot from planning treatment, to planning his end of life. I just knew that Oliver needed to be at home for as long as possible, before being moved to his grandparents’ house where we shared so many special memories.

While some of the palliative care that Oliver received helped us as a family, like support from our children’s local hospice, when it came to end of life care at home for Oliver, things became much harder. After being told that it would be very difficult to put a care package in place for this to happen, I was forced to take on the task myself – instead of spending precious time with Oliver.

I made a nuisance of myself. I spent hours on the phone, pushing to try and get things moving. Ultimately it was because of that and the goodwill of nurses who wanted to help that we got something in place – not because they were being funded to do so.

In mid-November 2023, Oliver’s health started to decline. And by December, in the last two weeks before he died, our friends and family took shifts to be with Oliver through the night, and nurses worked beyond their contracted hours to cover the care he needed.

In the end, Oliver died peacefully and without pain. It was a good experience, if you can describe it as that.

But to get to that point cost a lot. I honestly thought that when your child is dying, you would have 24/7 care at home, funded by the state. But it turns out, that just isn’t the case.

Families like mine aren’t getting the care they need, and aren’t able to make choices about their child’s end of life, because of where they live. So many feel abandoned and overwhelmed by a system that is failing them. I know there is an endless list of health and care issues in the UK, all clamouring for budget and recognition and all with enormous merit. But when we are unable to prioritise or meet the needs of our dying children, something in our society is broken beyond repair.

How do we live in a world where parents aren’t able to give their dying child the best end of life experience? How is it okay that children like my beautiful Oliver aren’t treated as a priority?

You have the power to change this, but time is short for seriously ill children. Please act now to build a children’s palliative care sector that lasts.

Yours sincerely,

Clare Buchanan