End of Life Care

Baroness Wheeler Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I too congratulate the noble Baroness, Lady Finlay, for her usual forthright and expert introduction to what has been an excellent debate, coming at a crucial time as STPs are taking shape and underlining the need for strong national and local leadership to achieve the improved care that we all wish to see. The publication of the BMJ’s CCG research, which she was involved in, could not have been better timed for our debate, and I thank her for that too.

I also commend the excellent work of the End of Life Care Coalition on the independent choice review and the ambitions framework. The national choice offer of what should be offered to everyone who needs end-of-life care, backed by dedicated funding, better training for healthcare professionals and better research and data collection around the care given, provides a clear way forward and is fully supported by these Benches.

Today’s debate makes it clear that if STPs are to be the route for implementing the Government’s national commitment, local plans have to be backed with the money to implement them. CCGs that are failing to prioritise and appropriately commission end-of-life care that meets people’s needs must be called to account both locally and nationally and supported to do better.

The context for the debate has been clear—a familiar story of many examples of excellent quality and compassionate care in community, voluntary sector and hospital settings, but examples of considerable variation in the nature and quality of services provided both between and within geographical areas and between different medical conditions. Instead of national leadership from NHS England and the Government, however, we have the deafening silence in the Government’s response to the choice review’s call for an extra £130 million to deliver choice by the end of this decade. Like other noble Lords, I look forward to hearing from the Minister how he expects to seek improvements in end-of-life care without committing to the additional funding called for in the review. What action will be taken to address the failure in so many STPs to see end-of-life care as a core service and to prioritise funding and planning? As the Marie Curie charity puts it:

“It is unclear to us how the Government intends to support more people to get out of hospital at the end of life without additional money to boost capacity”.


Delayed transfers of care jumped by 29% between September 2015 and September 2016, and about 30% of those people are in the last year of life.

Providing national choice in end-of-life care means increasing out-of-hours hospital care and co-ordinated, integrated services and close partnership working between the NHS, voluntary sector and community services and social care. Excellent care at home programmes such as Macmillan specialist care deliver a proactive model that we all support of early patient referral to a multidisciplinary team, clinical interventions at home where possible, close and proactive working between primary and other service providers, flexible teamwork between specialists, generalists and trained volunteers and the close involvement of family and carers.

End-of-life care has well-established systems for working together, particularly in hospital, hospice and home care, but some STPs do not fully recognise the importance of third sector involvement in the delivery of end-of-life care plans and there is particular concern that hospice services, which rely heavily on charitable donations to cover full running costs, are especially vulnerable, as my noble friend Lady Massey stressed. Will the Minister give us reassurances on this?

On STPs, the King’s Fund’s recent progress assessment, while not specifying end-of-life care, asked highly relevant key questions about how it can be improved in the current NHS and social care climate. How are plans to be funded? How will integrated care be delivered in the concept of having to “work around” the,

“fragmented and complex organisational arrangements in the NHS created by the 2012 Act”—

its words not mine—and when the NHS is under huge pressure to make efficiency savings and improve performance? These questions all need to be answered if the vision set out in the national commitment is to be delivered. What is the Minister’s response to that?

We have heard particular concern about CCGs’ poor commissioning of children’s and young people’s palliative and end-of-life care in England. The noble Baroness, Lady Bakewell, raised the issue of the care of under-three year-olds and the noble Lord, Lord Carlile, spoke about hospices in that context. Together for Short Lives has found that 7% of CCGs do not commission palliative care for out-of-hours children’s nurses to support families and carers and avoid unnecessary, often traumatic, hospital admissions. The Rainbow Trust, which provides emotional and practical support to parent carers and families whose children have a terminal or life-threatening illness, received no funding from CCGs in 2015-16 and just 3% from local authorities. Hospice UK’s survey found that seven in 10 CCGs do not have a strategy for children and young people living with life-shortening conditions. I hope that the Government will undertake to work with charities such as Together for Short Lives to produce guidance for CCGs that outlines best practice and makes their responsibilities clear.

The ambitions framework stresses that every CCG board should have a clear vision of what package of services locally will deliver the goals of high-quality, professionalised end-of-life care and should actively seek out commissioning resources to achieve this. I look forward to hearing from the Minister how the Government intend to make sure that that happens.