HALTON MP Derek Twigg is calling for the families of seriously ill children to be able to make choices about their palliative care based on their needs not where they live.

Some 5,000 babies, children and young people in the UK under the age of 19 die every year.

Many are children with life-limiting or life-threatening conditions who need end of life care.

Having to plan and prepare for a child’s end of life care and death is the most stressful, heart-breaking, lonely and isolating thing that any parent can face.

Yet, despite a government commitment to end of life choice, access to good end of life care support, planning and care based on choice is not universally available to all families preparing for their child’s death.

Mr Twigg joined a charity coalition of 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, to campaign for better end of life.

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, and by implementing the NICE (National Institute for Health and Care Excellence) guideline on providing children’s palliative care.

Mum Sacha Langton-Gilks, whose son died as a result of a brain tumour in 2012, aged 16, 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 MP 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.

“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.”