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End of Life Care

Volume 783: debated on Tuesday 5 September 2017


Asked by

To ask Her Majesty’s Government how they intend to implement the NICE guideline End of life care for infants, children and young people with life-limiting conditions: planning and management.

My Lords, responsibility for implementing the NICE guidelines lies with local NHS commissioners and providers. NHS England has commissioned the charity Together for Short Lives to assess whether local provision follows these guidelines. The results will be shared to help spread best practice and address common challenges. These actions form part of the Government’s commitment to ensure that everyone at or approaching the end of life has good-quality, compassionate and joined-up care in a setting of their choice.

I thank the Minister for his reply. The resource impact tool published with this guidance shows that by investing £12.7 million in implementing the guidance, savings of £34.7 million could be made by the NHS in England. What plans do the Government have to emphasise to local commissioners the cost effectiveness of implementing the guidance? Secondly, does the Minister think it is right that adult hospices in England receive 33% of their funding from statutory sources while children’s hospices receive only 22%?

I thank the noble Baroness for raising this very important issue. On the tool and the cost effectiveness, we know how important it is to invest in these services. What we have now is not by any means a perfect service, but we do have the first national framework, NICE guidance and the CQC inspecting the quality of end-of-life care and showing up where there are still issues in provision. That is why we are working with Together for Short Lives and I think that the tool the noble Baroness has highlighted will help make the case to providers in order to do that.

There is significant funding going in from clinical commissioning groups and also what is called a care currency—a way of looking at that spending and making sure that it is being distributed to provide the care that is needed in a way that is predictable for the providers. In addition, another £11 million goes in from NHS England to support it. So there is always more to do but I think we are making good progress.

My Lords, I declare my interests, both as having established integrated paediatric palliative care services in Wales and as vice-president of Hospice UK. Does the evaluation that the Government have asked for from Together for Short Lives include evaluation of the experience of the family, including siblings, of the care? Are they able to access what they need when they need it, particularly on a 24/7 basis when the child is at home and crises may arise out of hours, to ensure that unnecessary and inappropriate emergency admissions are not happening because a family does not know what else to call for? Does the family feel supported—there is evidence of better long-term outcomes, both in the bereaved parents and in bereaved children?

The noble Baroness is a true expert on this topic and we had a very good debate on the subject, which she initiated, in March this year. In terms of the experience of care, I will check exactly what the charity is looking at. I know that there is now a measure—a questionnaire—of maternity bereavement which is looking at the experience of care and trying to learn from that, and I will see whether that is more broadly the case in terms of siblings and others, and indeed for non-neonatal child deaths. On 24/7 provision, again, we know that it is not yet universal but a couple of pilots are taking place on 24/7 nursing community care, so we are making some progress on that. Indeed, one of the metrics by which we will measure our success is the number of admissions and the time spent in hospital in the final 30 days of life, which speaks to the point she was making in trying to keep those who are dying out of hospital if that is not where they want to be.

My Lords, does the Minister accept that we live in a society animated by humane values, which is also one of the richest societies in the world, and that there can be no excuse for the extensive failure to provide appropriate palliative care for children who are terminally ill or bereavement support for their parents that has been reported by the Royal College of Paediatrics and Child Health and the charity Together for Short Lives? Will the Secretary of State, who is accountable for these matters, use the authority of his office to ensure that sufficient services are commissioned and sufficient qualified staff are available so that the NICE guidelines can be implemented fully and consistently across the country?

I agree that there is more to do but progress has been made since the first national framework was published a couple of years ago, building on the work of successive Governments. Staffing is important. There are more early-life nurses than there were seven years ago. More than that, additional training is also going on. This is a really important part of this. Health Education England’s mandate now includes end-of-life care training within various care packages. Indeed, through the Nursing and Midwifery Council, midwives are starting to get systematic end-of-life care training. Given that, unfortunately, 40% of these child deaths happen in the neonatal and newborn setting, that is incredibly important. But I take the noble Lord’s point.

My Lords, as the Minister has already intimated, the key to delivery of end-of-life care to children and young people is the work of our children’s hospices. Given the 22% figure, will Her Majesty’s Government follow the lead of the Scottish Government and agree to work towards funding 50% of children’s hospices’ charitable costs, to the benefit of the patients concerned, rather than allow the proportion to decrease?

I thank the right reverend Prelate for making that point. In Scotland there are different funding environments. I am aware of the 50% funding commitment from the Scottish Government. We are trying to make sure that CCGs in England not only have the funding they need by increasing NHS funding in real terms but that they understand how to spend it well for end-of-life care, and topping that up where necessary with central funds. So there is a big spending commitment there and with the new accountability framework we have a way of holding those CCGs to account for their performance.

My Lords, the Minister has talked about a new accountability framework but the fact is that the work that has been done so far shows that CCGs are simply not implementing the guidelines. What is the point of NICE guidelines if we cannot be assured that they are going to be implemented? I refer him to the NHS England mandate for 2017-18, which talks about developing a set of measures on end-of-life care against which CCGs will be judged. Can he assure me that the NICE guidelines will be fully part of those measures?

It is important to point out that the NICE guidelines are not mandatory in and of themselves. What matters is that there is high-quality end-of-life care provided at the local level and indeed that CCGs are judged on that care. They can of course do things differently and that is the point of the system: to trust that clinical judgment. The noble Lord is quite right that end-of-life care is in the mandate—that in itself is a relatively new development. I will come back to him on the specifics that he asked for about the extent to which those metrics will be included in the mandate.