Last week, children’s hospices across Britain came together to raise awareness and change the perceptions of hospice care.
Children’s Hospice Week (23-29 May) is the UK’s only awareness week for children with life-limiting conditions.
The word hospice can often generate assumptions which do not necessarily reflect the modern day realities and those who work in the sector say there is often a perception that hospices are only places where children come when they reach the end stages of their life.
Figures from Together for Short Lives show there are more than 49,000 children and young people living in the UK with life-limiting health conditions – that’s the equivalent of one child in every school.
Families have to cope with the knowledge that their child has a limited life expectancy and daily life can become a challenge which is why children’s hospices are here to support the whole family. Without that support, caring for a seriously unwell child can put significant strain on even the strongest families.
Since Helen and Douglas House – the world’s first children’s hospice – opened in Oxfordshire in 1982, there are now more than 50 children’s hospice services across Britain.
I am proud to support the invaluable work of hospices in my own constituency, such as Rainbows Hospice in Loughborough. Since 1994, Rainbows has been looking after children and their families, and I’ve seen first-hand the excellent work they do and the support they offer to every family member.
I am also proud of the role that members of my party have played in contributing to the hospice movement. My colleague and friend, Iain Duncan Smith, has continuously championed the sector for many years. As a patron of Haven House Children’s Hospice in his constituency of Chingford and Woodford Green, Iain has helped raise awareness of the issues faced by the families of life-limited children.
Haven House supports 329 children in North and North East London, West Essex and East Hertfordshire. Haven House performs an incredible role in enabling life-limited children to continue access education, learning and play. It also provides vital support to the siblings of children who use the hospice with its ‘Buddies’ service.
A sibling with a brother or sister who cannot play or communicate in the same way as other children may not realise this is unusual until they reach school. It can also be difficult for a sibling as they progress through school if a parent has to spend a significant amount of time caring for a child who will always have substantial health needs.
Schools have to be mindful of these issues and embrace the need to build an inclusive environment for life-limited children. This can be a difficult area for teachers who understandably may lack confidence in navigating such a sensitive subject, which is why hospices such as Haven House regularly go into schools and conduct workshops for staff and students on how they can support life-limited children.
I want as many schools as possible to continue the good work of Children’s Hospice Week by making contact with their local children’s hospice and finding about all of the different ways they can support their work. With National Volunteers’ Week taking place in the first week of June – this is really a great time to get involved with your local children’s hospice.
Together we can make a difference to the lives of life-limited children.