Demelza Chief Executive welcomes call for more support for dying children and their families

26 October 2018
Calls for more support for children with terminal conditions have been welcomed by the Chief Executive of Demelza Hospice Care for Children.

Ryan Campbell has given his backing to the findings of a new report by the All-Party Parliamentary Group for Children Who Need Palliative Care and also welcomes its recommendations which call for the Government to take urgent action in several areas, including funding.

Mr Campbell said: “There have been cut backs in funding for respite breaks for children with complex disabilities and sometimes the only break these families have is through charitable organisations such as Demelza.

“We would like to see families being given more help and support – as well as choice. We believe they should be able to choose the place of death for their child, but at the moment that is not the case.

“The report also mentions the various agencies and organisations working more closely together, which is something we welcome and in fact that is now happening here in our area. Through new clinical network partnerships and a strategic approach within the wider health and social care planning system we are looking at future plans to transform health and social care. It’s good news that as experts in children’s palliative care we are included.”

The All-Party Parliamentary Group for Children Who Need Palliative Care has been examining the extent to which the Government is meeting its end of life care choice commitment.  

Their report found that England’s most vulnerable children are not able to access the full range of care and support that the Government has committed to, for 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. 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, was published on 21 October. It highlighted five areas of particular concern, where 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
• advance care planning

The APPG identified five areas in which it wants the Government to take urgent action. These included leadership and accountability, clarity for those who plan and fund (commission) children’s palliative care, funding, workforce and integration.

Dr Caroline Johnson MP, a Consultant Paediatrician and Co-Chiar of the APPG for Children Who Need Palliative Care, 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. 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,” said 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.”