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Isabelle’s story: “They took all the strain away and made sure that we could make the most of the time we had with Isabelle”

Isabelle was just a baby when she was diagnosed with Zellweger Syndrome. A very rare genetic condition that causes problems with the brain, liver and kidneys. She had severe vision and hearing loss and suffered regular seizures.

What it means to have 24/7 palliative support?

When Isabelle was unwell and eventually diagnosed, her parents felt totally alone. But when they met the NHS Children’s Palliative Care team, everything changed. They were determined to care for Isabelle at home and the Palliative Care Team helped make this possible.

Isabelle’s mum, Sarah explains, “Isabelle would have a lot of seizures overnight and cried a lot. Nothing would help settle her. Sometimes we felt inadequate and sometimes things were very hard. The team offered us respite and a break from 24/7 caring, allowing us to rest and catch up on sleep. We became very comfortable having them in our home, they became like friends.”

They took the strain away and made sure that the family could make the most of the time they had with Isabelle. Isabelle’s family felt in control at all times. As well as twice-weekly respite breaks, they helped with equipment and prescriptions, which took a great weight off the families.

Isabelle’s mum, Sarah felt reassured by the palliative team, “We took Isabelle on holiday a couple of times and the team always supported us by contacting the local hospital for us to ensure they were aware we would be in the area. This gave us peace of mind when taking Isabelle away.”

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

“Isabelle deteriorated very quickly. We called their on-call number immediately for support, and they were there instantly. We trusted our consultant completely. She took control of the whole situation. She made sure that Isabelle’s death was the best it could be.”

When Isabelle died in June 2019, the care didn’t stop. “We had a lot of questions, which they happily answered, which helped us to look forward and not back. The team always advocated for Isabelle to ensure she received the best possible care. We will never be able to truly thank them for all they did.” explains Isabelle’s mum, Sarah.

Other families like Isabelle’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