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Service which supports children with life-limiting conditions celebrates 30th anniversary

By 11th December 2023No Comments

Our Lifetime Service is celebrating 30 years of helping thousands of seriously ill children to receive the care they need at home, rather than in hospital.

Our Lifetime Team provides a nursing and psychology service to children with life-threatening and life-limiting conditions, and their families, across Bristol, North Somerset, and South Gloucestershire (BNSSG).

The team enables children to live at home, attend school and enjoy activities they would not normally be able to do if they had to remain in hospital.

One mother, whose son is supported by the Lifetime Service at night and during the day at school, said of the team: “Having people in your home is very unusual, but I couldn’t do it without them. They are part of our family, and my son looks forward to them coming.

“The Lifetime staff who go to school with him know when to leave him alone so that he can have that peer interaction. We are very fortunate because he’s been able to go on camping trips and a school residential which we never thought he’d be able to do.

“The Lifetime Team works out what they can do to keep him safe and make it enjoyable. It’s not about him not being able to do things, they enable him to have a taste of fun and normality. It takes a lot of work, and the team goes above and beyond, they are amazing.

“Every day is a wow moment because we never thought he would be able to do so many things he can now do. He’s exceeded expectations. I can’t give the Lifetime Team enough praise. They enable him to be the remarkable person he is.”

The Lifetime Service began as a pilot study in the Bath health district in 1993 funded by the Department of Health. It was led by Mary Lewis, who is now Sirona’s Chief Nursing Officer, and a clinical psychologist who were tasked with researching the needs of children with life-limiting conditions, and their family members, and finding out what services were available to help them.

They quickly discovered that while there were a lot of services for children and young people with cancer, there was little or no support for children with non-malignant conditions. They soon had 93 children and their families on their caseload, and they began carrying out certain clinical procedures in the child’s home, so they did not need to visit hospital. They also started offering support to the families and setting up sibling groups.

Mary said: “We became very busy looking after these children and their families and finishing off our research. Staff in hospitals started getting in touch with us so we started seeing other children, either newly diagnosed or children with other conditions who had life-long needs. In 1995, we got long-term funding for a community children’s nursing service for children with complex illnesses and a family nursing and psychology service.”

After securing funding, the team was able to take on two more nurses. Mary – who had previously worked in children’s oncology before training as a health visitor – was determined to expand the service after speaking to a teenager with cystic fibrosis about what the Lifetime Service meant to him.

She said: “He had to regularly stay in hospital for long periods of time to have different treatments because nobody could come to see him at home. After hearing how thrilled he was that he would no longer have to go to hospital, I never went back to children’s oncology. I knew we needed to make this work.”

The service expanded in 1998 to include a continuing care team – which involves nursing practitioners working in the community to make sure children can be safely supported at home, in schools and accessing activities.

Mary added: “We developed a new way of working which was nationally recognised. We were then commissioned to work across the whole of Bristol, North Somerset, and South Gloucestershire. We looked after the nursing and care needs of children and young people and helped them to do activities they really wanted to do such as sailing or horse riding when also needing to be on a ventilator or with special equipment to help them be well.

“We also identified unmet psychological and emotional needs of the children, their brothers or sisters and parents, and the psychology service was developed, alongside the nursing service to help with these needs.”

The Lifetime Service is now run by us and comprises the core nursing team, the continuing care team, and the clinical psychology service.

Support offered by the core nursing team includes carrying out clinical tasks in the community; working with multi-professional teams to plan the child’s nursing needs; training families and carers in specific nursing tasks; providing palliative care; bereavement support and helping young people to transition to adult services.

The continuing care team provides overnight support to parents and supports children in school settings, while the Lifetime Psychology Service works alongside the nursing team to support the emotional and psychological wellbeing of the family.

The service supports an average of 130 children, young people, and their families each year.

Mary, who left the Lifetime Service 13 years ago to become Chief Nursing Officer, said: “I’m so very proud of the service and what they are all doing to help families. They enable children to live with life-threatening illnesses. They improve their quality of life, which is what it’s all about, but they also help them, and their families, to thrive.

“It’s been a great privilege to have worked with so many amazing people over the years and I want to thank all of the team for their ongoing dedication.”