A new report by a cross-party group of MPs and peers has revealed that England’s most vulnerable children are not able to access the full range of care and support that the government has committed to.
The All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care 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.
The report reveals that babies, children and young-people with life-limiting conditions who need a spectrum of health and social care services to meet their often complex needs and the needs of their families, are likely to die young.
Despite the commitment made by the government, which outlines six ways ministers believe that people approaching the end of their lives should be supported, the APPG has 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. MPs and peers state that this is unfair and represents a wholly unjustified health inequality.
The APPG’s report, End of life care: strengthening choice (published yesterday, 21 October 2018), highlights five areas of particular concern, where many children and their families have limited access to. These are:
- 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
- Advance care planning
This failure to provide appropriate services has a huge impact on families. Nikki Lancaster, mother of Lennon Ruffles, a young boy who died last year as a result of a life-limiting condition. “Looking after Lennon was a full-time job,” says Nikki. “He required medical intervention hourly during the day, and every two hours throughout the night.
“I honestly felt like I was solely responsible for keeping my son alive, and that’s a huge responsibility. To give Lennon the quality of life we wanted him to have, we depended on a network of services – for families like mine, high quality children’s palliative care is essential. Without it, we just couldn’t have survived. We need the Government to fulfil its commitment and help children and families make the most of every minute”
The APPG has identified five areas in which it wants the government to take urgent action. It would like to see ministers to take action on:
- Leadership and accountability
- Clarity for those who plan and fund (commission) children’s palliative care
“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,” says Dr Caroline Johnson MP, a consultant paediatrician and co-chair of the APPG for Children Who Need Palliative Care. “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 the ministers, will threaten their ability to meet their end of life care choice commitment for children by 2020. I ask the government to work with us to implement the recommendations we make.”
Catherine McKinnell MP, Co-Chair of the APPG, said “Well-planned and funded children’s palliative care, including that provided in hospitals, children’s hospices and in the community, improves outcomes for children with life-limiting conditions. It also helps to prevent costly, emergency admissions to hospital when families reach crisis point. I urge ministers to make sure that children’s palliative care is part of the NHS’s new plan, and that it is sustainably funded in the long-term, both through NHS and local authority funding.”
“Children who have life-limiting conditions and their families don’t have any time to waste,” says Andy Fletcher, Chief Executive of children’s palliative care charity Together for Short Lives, which supported the APPG to research and write the report. “They need the support and services to allow them to make the most of their time together – without this lifeline support their lives can become even more difficult. We support the recommendations of the APPG, and ask Theresa May and her ministers to fulfil the commitments they have made around children’s palliative care. We’d encourage all our members, supporters and the public to contact their own MPs and ask them to ensure everyone involved – ministers, officials and commissioners – work tirelessly to make this commitment a reality.”