Call for better end of life choices
HALTON’S MP has joined six national charities in calling for seriously ill children and their families to be able to make choices about their palliative and end of their life care.
Derek Twigg is backing the organisations in their campaign pressing the Government to end a postcode lottery.
It asks for families to be able to choose palliative and end of their life care for ill youngsters based on their needs, wishes and best interests and not restricted by the area in which they live.
The charity coalition includes Together For Short Lives, The Brain Tumour Charity, Clic Sargent, Teenage Cancer Trust, Marie Curie and The National Gold Standards Framework Centre In End Of Life Care.
A total of 5,000 babies, children and young people in the UK under the age of 19 die ● every year and a significant number are children with lifelimiting or life-threatening conditions who need end of life care.
Mr Twigg joined the six charities at a Westminster reception called #FollowTheChild.
The coalition is calling on the Government to end the postcode lottery and help families facing the unimaginable have the best possible experience by meeting its end of life choice commitment for babies, children and young people.
It is also calling for an implementation of the National Institute For Health And Care Excellence (NICE) guideline on providing children’s palliative care.
NICE calculates that by investing £12.7m in implementing its guideline on end of life care for children, non-cash savings worth £34.7m would be released back into the NHS in England.
During the reception Mr Twigg heard from Sacha Langton-Gilks whose son died as a result of a brain tumour in 2012 aged 16 but had a calm and peaceful death at home.
However, Sacha believes that the experience which her family had was largely due to good luck.
She told MPs that the idea that luck should dictate whether you are able to follow your child’s wishes and manage a good death for them is outrageous.
Mr Twigg said: “I really appreciated having the opportunity to hear Sacha’s story and to understand how important a good death is for a seriously ill child and their family.
“However, it was evident at the reception that there is much more to do to help families access the end of life care they need, when and where they need it.
“I join the coalition of charities in asking ministers to follow the child and make sure that seriously ill children and their families are able to make choices about their palliative and end of their life care which are based on their needs, wishes and best interests - and are not restricted by the postcode in which they live.”