Together for Short Lives
Call the Helpline 0808 8088 100

George’s story: “They were at the house when we needed them, day or night, and were always at the end of the phone”

George was born with an extremely rare condition called Batten Disease variant CLN8. This causes vision loss, seizures, learning difficulties, loss of speech and motor skills and early onset dementia.

In October 2016, when George was three years’ old, he had seizures at nursery. A specialist diagnosed him with epilepsy. However, after displaying other symptoms which concerned doctors, George was given a series of tests. In February 2017, these confirmed that George had Batten Disease.

Within a month of his diagnosis, George was referred to the NHS South Warwickshire Foundation Trust community children’s nursing (CCN) team.

The team were amazing. We would not have got through George’s journey without them. They held our hand and helped us to understand what was to come.

George's mum, Claire

George began having seizures regularly and suddenly became unable to climb the stairs – something he had been able to do easily before. Instead of walking all the time he began crawling. By the end of 2017, he needed a frame to walk.

Over the next year George’s condition continued to deteriorate to the point where the few words he could say were gone. He also lost the ability to stand or walk and had to rely on a wheelchair. George was moved to a special school, which he attended four times a week, and was given regular physiotherapy, speech therapy and palliative care.

George had to have a feeding tube fitted because he could no longer chew his food properly. He went blind and began to have up to 30 seizures a day. He suffered from dystonia, causing stiffness and pain in his body.

What it means to have 24/7 palliative support?

By 2019, George was approaching the end of his life. “We wanted George to receive end of life care at home” says Claire. “The CCN team helped us to make an end of life plan and supported us to give George the palliative care he needed. They showed me how to carry out complex clinical tasks, like changing tubes and administering medicines. They taught me to be a chemist.”

When the family needed the palliative team, they were there.

George died in June 2019, two weeks before his sixth birthday. “We had no idea how much time we would have with George and the final weeks of his life were traumatic” says Claire. “But with the CCN team’s support, we were able to make choices and to control his symptoms They were at the house when we needed them, day or night, and were at the end of the phone. George was able to die at home, and they gave me time to be with him, which was precious.”

“The care the CCN provided to us was immaculate.” Claire praises the support she received, when she needed it the most.

Other families like George’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