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Timmy’s story: “We had to manage alone”.

Timmy 24/7

Timmy had Cerebral Palsy, a learning disability and epilepsy. His mum Alison explains that when they needed help the most, they were sent home without the support they needed.

“Timmy had difficult health up to age 10. When he became a super responder on the ketogenic diet and his quality of life improved, they stopped needing to access the children’s hospice for respite.”

When we were discharged, we had to manage alone.

Timmy's mum, Alison.

What happens when the  24/7 palliative support isn’t there?

As Timmy approached 16 he started screaming every day and his seizures increased. A gut condition was diagnosed and he was operated on. Later when this failed to help, Timmy was readmitted and his family were told there was nothing more that could be done and he was sent home.

“This left us in a situation where we had to find and travel to a hospital far away from our home and without any advice,” explains mum Alison.

“When we were discharged, we had to manage alone. We were told that we needed a doctor to confirm that Timmy may die in the next 24 hours, before we would be eligible for any support at home. The out of hours GP came out, but he couldn’t help provide a written note, because he didn’t know Timmy’s full prognosis – as he had never been involved in his care before.”

What impact does this have?

Alison explains, “We didn’t have access to the community nurses and we weren’t told what their role was. It was the weekend and we were not given enough information to fight for this. This was frightening because we were caring for a child whose needs we didn’t understand.”

Other families like Timmy’s need your help, so every child can get 24/7 end of life care in England.

Worryingly, our new report highlights that not every family is getting the support they need. Our interactive online maps show that the extent to which seriously ill children and their families can access services which achieve these standards is very patchy and depends on where they live.

We are particularly concerned about children and families’ access to end of life care at home, 24 hours a day, seven days a week, supported by nurses and senior consultants who have the knowledge and experience to meet their often complex needs.

We need your to help. Use our maps to find out the situation in your area. Sign our open letter to the government to ask them to take action.


Family stories