A NEW children’s palliative care service has launched to support children and their families across the North East and North Cumbria.
The Children’s Holistic Integrated Palliative Service (CHIPS) is a small team of specialist nurses and doctors, based at the Great North Children’s Hospital in Newcastle, who work across the region’s hospitals and in the community.
Alongside supporting children and their families, they also offer advice, teaching and training to other health care teams across the region.
Dr Jo Elverson, consultant in palliative medicine at Newcastle Hospitals and St Oswald’s Hospice and part of the CHIPS team said: “We’ve recently marked Children’s Hospice Week so it is timely to talk about the work that we’re doing to support children and their families.”
Children’s Hospice Week is an annual awareness campaign dedicated to the 49,000 children across the UK living with life-limiting conditions and the lifeline services that support them.
The CHIPS team support children with a wide range of conditions, working closely with their families and the other teams providing their care.
“Often when people think of palliative care they think about end of life care, and it’s not just about this,” added Dr Elverson.
“Children’s palliative care is very much about enhancing the quality of life for those children with a serious or life-threatening condition. In situations where death is expected we help families to feel as prepared and supported as possible.”
“We are there for children and families during those times where there may be uncertainty about what is going to happen next, when difficult decisions need to be made, or when the child, their family or the teams caring for them need some extra support or advice.”
The development of this new regional service comes after collaboration between a regional network of partners representing specialist teams from NHS Trusts, community services and hospices.
The CHIPS team have worked with over 50 families since launching in January this year and one of the first patients referred into the service was 7-year-old Zoya Khan.
Zoya had a number of complex health issues and was receiving care for a neuro degenerative condition.
Working alongside Zoya’s hospital, community and hospice teams, the CHIPS team supported Zoya and her family before she sadly died in January – only two weeks before her eighth birthday.
Zoya’s mum, Jamila, believed the care from the team was vital in helping her to make sure her wishes were met.
“Zoya was such a happy, smiley girl, watching her deteriorate so was devastating but the CHIPS team were there to support me at all times – I feel so lucky that they were part of Zoya’s team,” she said.
“We received the most amazing care from everyone who looked after Zoya but there are somethings we just couldn’t have managed without the support of the CHIPS team.
“We were in the process of adapting our new home to make it more accessible for Zoya but we knew we were running out of time. All I wanted was for her to have some time in her new home and with the support of the CHIPS team we were able to do that.
“She was only there for eight days but those eight days were so special it meant the world to us to have her home. The team helped to make my wishes come true.”
Children’s palliative care encompasses the physical, emotional, social and spiritual wellbeing of the child or young person and their family and it was this emotional and spiritual wellbeing that was so important to Jamila.
Jamila continued: “I always felt so supported, the team were always on hand to answer any questions and kept in touch to make sure we were ok. I never felt alone.”
“Zoya died early on the Saturday morning, it was so peaceful. The CHIPS team took care of everything for me, they cared for us and made sure I was ok, they came and confirmed her death then arranged for us to have her death certificate and because they were able to do that so quickly we were able to bury her on the same day. I wasn’t expecting us to be able to do this because it was a weekend and usually you would have to wait until the Monday. The fact that we were able to do that was so important to us.
“The CHIPS team are amazing – I will always remember the help and support they gave to me. They touched my heart and I cannot thank them enough. We wanted to make sure she had the best – and the CHIPS team – alongside all of the other amazing teams caring for her really made sure she did.”