Sleaford and North Hykeham MP Dr Caroline Johnson last Tuesday launched a report in Parliament into end of life care choice for children as co-chairman of the All Party Parliamentary Group for Children Who Need Palliative Care.
Babies, children and young people with life-limiting conditions are likely to die young. They and their families need a spectrum of health and social care services to meet their often complex needs.
The APPG has been examining the extent to which the government is meeting its end of life care choice commitment to these seriously ill children and their families.
Despite the commitment – which outlines six ways ministers believe that people approaching the end of their lives should be supported – the APPG heard evidence from young people, families, services and professionals that the quality of palliative care children and families can access is patchy and depends on where in England they live.
The APPG’s report highlights five areas of particular concern. Many children and their families have limited access to: children’s palliative care out of hours and at weekends; short breaks for respite; age-appropriate palliative care and smooth transitions to adult services; specialist children’s palliative care teams led by Level 4 consultants; and advance care planning.
The report makes a series of recommendations to government about how this can be improved.
Dr Johnson said: “The government’s commitment to the 40,000 babies, children and young people in England with life-limiting and life-threatening conditions is clear and welcome.
“As a children’s doctor myself, I know that it is vital that all have access to advance care planning, specialist services, and short breaks for respite.
“As much choice as possible should also be given to seriously ill children and their families about where their care is provided, how it is provided, and by whom. However, we have identified a number of different challenges which, if not quickly met by ministers, will threaten their ability to meet their end of life care choice commitment for children by 2020.”