MPs should make sure that access to palliative care for seriously children, young people and their families is a key focus during an important House of Commons debate on Wednesday (30 March), says Together for Short Lives.
- specifically require new local NHS bodies in England (integrated care boards, also known as ICBs) to commission services or facilities for palliative care, including specialist palliative care, as they consider appropriate
- require the joint forward plan for an ICB to set out any steps that it proposes to take to address the particular needs of children or young people under the age of 25
- require the health and social care secretary to publish and lay before Parliament a report describing the government’s policy on information-sharing by or with authorities with health and social care functions, for purposes relating to children’s health or social care or the safeguarding or promotion of the welfare of children.
Andy Fletcher, Chief Executive of Together for Short Lives, said:
“MPs have an opportunity to make some important changes to legal framework affecting seriously ill children and their families. I support peers’ decision to accept the government’s amendment the Health and Care Bill, which will place a duty on the NHS to plan and fund children’s palliative care. I welcome the positive changes made to the bill on children’s health services too. I hope that MPs will also accept these changes, which has the potential to improve the access that children and families have to these lifeline services.”
Peers also chose to amend the bill during the Lords stages to make sure that, where parents and professionals disagree about the best interests of a child with a life-limiting condition, services caring for the child must:
- listen to parents and providers offering alternative treatment options
- make medical data available
- explain why these alternatives could cause significant harm and allow for a mediation process.
Ahead of its return to the Commons, the government has tabled an amendment to remove the Lords dispute resolution amendment from the bill. However, it has tabled its own amendment, which would place a duty on the health and social care secretary to carry out a review into the causes of disputes between parents and professionals, which would report within one year.
Andy Fletcher said: “The Lords amendment could help to make sure that parents of seriously ill children and the professionals and services caring for them resolve conflicts about what is in a child’s best interests by mediation and not in court. While the government’s amendment would prevent this from becoming a legal duty, I would welcome a review into these disputes which are distressing for both parents and professionals. However, I call on ministers to describe to parliament during the debate what the terms of reference would be. The review should involve young people, parents, professionals, children’s palliative care services and Together for Short Lives. As a principle, it is important that parents and professionals are supported as much as possible to reach consensus about a child’s best interests, with access to independent mediation if needed.”
As a principle, it is important that parents and professionals are supported as much as possible to reach consensus about a child’s best interests, with access to independent mediation if needed.Andy Fletcher, Chief Executive of Together for Short Lives