Jessie May
Children’s Hospice at Home
Jessie May provide provide respite and palliative care for children with terminal and life-limiting conditions in their own homes. They support the whole family for the whole journey – in life, at the end of life and in bereavement.
Jessie May was set up by the parents of Jessica May Purrington after Jessica died from a genetic condition when she was only 4½ months old.
Jessica’s parents were determined to do what they could to enable other children, and their families, to get support in their own homes and the choice to die at home when that time comes.
The Cause
Evidence shows that palliative care in the home can significantly increase quality of life for children and reduce hospital admissions. It can also reduce psychological distress for families.
Parents of young people supported by Jessie May have said what a difference it makes to their lives.
“I wanted Charlie at home, and if he was going to die, I wanted him to die at home surrounded by his family and everything that was familiar and safe. Jessie May enabled that to happen.” Julia
“Jessie May helped us with getting Archie home [from hospital] and settled and provided us with lots of information .
“Most importantly though, they would arrive with a huge bag of colourful toys. Coming home to find him draped in a bright pink feather boa, having the time of his life is one we will never forget! I felt like he was so loved.” Laura
What They Do
Jessie May provide essential hospice at home services:
1) Specialist respite care
Children supported by Jessie May often have conditions that make it impossible for them to be left with non-medically trained people. The nurses give parents the confidence to take a break and re-charge or spend quality time with their other children.
2) End of life care
Jessie May nurses help families plan for the end of their child’s life. When the time comes, Jessie May can provide specialist end of life care so their child can die at home in a place that is familiar and safe.
3) Bereavement support
Jessie May nurses will support the whole family from the end of life, up to five years after their child dies. This includes help with funeral arrangements, individual bereavement support and group support.
– A story from Jessie May-
Noah’s Dinosaur Lessons
Three year old Noah has a condition that affects his liver and kidneys, so spends a lot of time in and out of hospital – even when he is well. He had a liver transplant before he was two and has to go into hospital for dialysis five days a week for 3-5 hours each time.
His mum and dad juggle looking after Noah with running their own pub and looking after Noah’s older siblings.
Mum Beccy says ‘When we get home from hospital I don’t have loads of time for one on one play with him because I have other stuff that needs doing. So he loves the one to one play time with Jessie May nurse Lois”.
Noah has never been to baby group, nursery or pre-school, which mostly take place in the morning when Noah has dialysis. And he can’t go to activities like soft-play because he has a weak immune system. As a result Noah is a bit frightened of children his own age, especially because they can be curious about his tubes. So play time with nurse Lois is very important for him.
Beccy says “He gets so excited when he knows Lois will be visiting soon. He’ll ask every day ‘is it today?’”
Nurse Lois, spends time doing lots of different activities with Noah. He especially likes showing her his dinosaurs and trying to teach her their names, he sighs whenever she gets them wrong!
Beccy says “One time I came home, and Noah was talking about emotions and the sad and happy faces, and he’d been learning all of that with Lois, it’s a really special time… Noah loves Lois. Having a Jessie May nurse has made Noah happier.”