Children’s end of life services are among the areas that urgently need to be addressed in planned reforms to palliative care in England, MPs have warned.
A new report by the Health and Social Care Committee has called on the Government to ensure its forthcoming plans for the palliative and end of life care sector lead to lasting improvements for patients and families.
The Government has said it will publish a Modern Service Framework later this year, setting out updated guidance on how palliative and end of life care services should be delivered.
The Committee said the framework must include specific standards for the care of babies, children and young people with palliative care needs.
It also called for 24/7 services to be available across the country, alongside a plan to strengthen the specialist workforce, including doctors, nurses and other healthcare professionals.
The recommendations build on findings from the Committee’s Independent Expert Panel, which gathered evidence last year on weaknesses in the sector.
The panel found that palliative and end of life care services were affected by staffing shortages, inadequate social care provision and fragmented services that were difficult for patients and families to navigate.
It also warned of a “postcode lottery” in the quality of care across England, driven by inconsistent local commissioning, varying levels of need and palliative care being overlooked by some NHS commissioners.
Layla Moran MP, chair of the Health and Social Care Committee, said: “It feels unthinkable that specialist care services for those who are close to passing away are somehow undervalued in the NHS.
“And yet that is the heartbreaking reality that too many frightened patients and their families, including of young children, have to encounter during some of their most trying moments, when help is most needed.
“Under questioning about the Government’s plans to drive up standards in palliative care, the Minister’s answers frequently reverted to what may appear in the forthcoming Modern Service Framework and NHS workforce plan.
“It is welcome that this neglected sector is finally getting renewed attention. But this Committee is sceptical of how much store has been set on the MSF, in particular when there has been no indication that additional resources are coming, other than one-off capital investments which will do little to tackle poor recruitment and retention.”
The Committee said better commissioning could be supported by improved data gathering, earlier identification of people who need palliative care, stronger national guidance and more joined-up working with adult social care and local authorities.
Moran added: “When the MSF does materialise, we will go over it with a fine-toothed comb and hold Ministers and officials to account for how their plans will be put into action.”