Following heightened public interest, Together for Short Lives has written an open letter to the Prime Minister calling for urgent action on children’s palliative care.
Read the open letter that Together for Short Lives, the UK children’s palliative care charity, has written to the Prime Minister calling for action to support the 49,000 children and young people with life limiting conditions and life threatening conditions who will die young:
The nation was deeply moved and saddened by the Charlie Gard case. Charlie was one of 49,000 children and young people across the UK with life limiting and life threatening conditions.
This letter is not about Charlie, his family or those that care for him. We are writing to the Prime Minister today asking she take urgent action on behalf of the other 49,000 children, their families and those that support them to improve their quality of life and end of life care.
The letter outlines six actions the government can take.
As the letter states, we believe that the needs of these families and children, because of their relatively small number, have been overlooked and misunderstood by policy makers and funders. But their number is growing and the complexity of their care needs increasing. It is vital therefore that we take the opportunity to address this issue now. We believe it is financially right, medically right and morally right to ensure that these children and their families are afforded a quality of life, however short that might be. We cannot ignore them anymore.