Together for Short Lives
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Archie’s story: “It’s just excruciating for your child to die, but to be peaceful at home was really wonderful”

Archie was 16 years old when he died. He was diagnosed at 2 years of age with Mitochondria disorder (a genetic disorder) and Bronchiectasis (a lung disease). This meant Archie used a wheelchair, was developmentally delayed, had an unsafe swallow (peg fed) and needed support for his lungs (Bipap machine) to breathe. He was able to attend school until the last 2 years of his life.

Archie’s mum Sophie describes Archie, “Archie was more than his disabilities. He was a very cheerful child, sunny temperament which was a blessing for us. He really liked school, he really liked his family, he liked laughing, he liked people, he very much lived in the moment. He enjoyed going for walks in his wheel chair and being out and about. We made sure he had as enjoyable a life as possible, within the parameters of his disabilities.”

“The fantastic thing about 24-hour high-quality palliative care at home is that the family can rest, relax and enjoy being with their loved child to the end.”

Archie's mum, Sophie

Sophie contacted Together for Short Lives was when his care package started to be cut from band 6 nurses to band 4 carers, which was a huge worry for her. “Any decline in the standards of care would lead to more chest infections and hospital admissions. I phoned for advice on how to appeal against care decisions made on his care package for budgetary reasons,” explains Sophie.

What it means to have 24/7 palliative support?

Archie was able to be at home right to the end of his life, due to the consistency of the skill of the nurses who cared for him 24/7, “We could act quickly when he desaturated (vital signs dropped), suctioning him regularly, watching over him.”

Good one to one care for Archie was vital for Sophie, “I could sleep all night if I knew he had a good nurse, if he did not, I would wake up all the time. If I knew it was someone trustworthy and good, I could half wake up and then go back to sleep, that is how important it is.”

“Christmas Day and Boxing Day were always extremely hard. I would usually have no cover for Archie, sometimes for both day and night, which was terrible. You would get exhausted from being up in the night looking after him and then being jolly for the other children. On all bank holidays are hard to get nursing or carer cover.”

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

Archie was able to go out for little walks everyday right until the end.

Sophie explains, ” The machines were turned off on Friday and he was just asleep, with his sisters chatting and playing around him, his aunties and uncles and cousins eating, and his granny sitting next to him all night long, patting him and holding his hand.  It was calm, peaceful, cosy and incredibly sad. He just fell more and more deeply asleep over the next 24 hours. The palliative people sat in the next room to adjust his morphine, as necessary.

I don’t think people think enough about a good death. I think people think a lot about a good birth. But a good death is a really profound and an amazing thing you can give someone. Everybody I think would like to die at home, amongst their beloved family, in a peaceful way.”

Other families like Archie’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