Together for Short Lives
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Timmy’s story: “When we were discharged we had to manage alone.”

Timmy had cerebral palsy, a learning disability and epilepsy. His mum Alison explains his condition, and the lack of 24/7 support she had when they needed it the most.

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

“As he approached 16 he started screaming every day, his seizures increased. They diagnosed a gut condition and operated, later when this failed to help they were readmitted and were told there was nothing more that could be done and were 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.”

"This was frightening because we were caring for a child whose needs we didn’t understand”

Timmy's mum, Alison

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

“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 couldn’t help provide any 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?

“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 and we were exhausted from his hospital stay.”

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 [LINK] 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 by using our maps [LINK] to find out the situation in your area and getting in touch with your local MPs to ask them to take action.


Family stories