End of Life Care

Baroness Finlay of Llandaff Excerpts

Tuesday 5th September 2017 Lords Chamber

[Lord O'Shaughnessy]

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.

[Baroness Finlay of Llandaff (CB)]

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?

[Lord O'Shaughnessy]

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.