My Lords, I am embarrassed to be called to speak ahead of the noble Baroness, Lady Finlay. I understand that the Deputy Speaker does not have discretion to make their own judgment about the sequence of speakers, but I hope this rule can be looked at. As it is, I add my thanks to the Minister, the noble Lord, Lord Kamall, for tabling Amendment 16. He and the noble Earl have graciously paid tribute to the noble Baroness, Lady Finlay of Llandaff. I am sure I speak on behalf of everyone by saying: so should we all. Her vision and persistence have beaten a path towards the progress we can now make.
Although the noble Lord, Lord Kamall, observed in his letter to us that it has always been a duty of the NHS to commission appropriate palliative and end-of-life care services, and that commissioning palliative care is a core function of integrated care boards, these obligations have hitherto been honoured perhaps as much in the breach as in reality. Provision has been patchy, shall we say? I think the noble Earl said that there had been “variations”; indeed there have.
I also acknowledge that the NHS does sometimes provide exemplary palliative and end-of-life care. Many noble Lords will know that my partner Patricia, Lady Hollis, died of cancer in 2018. I express my deep appreciation of the quality of palliative and end-of-life care she received at the hands of the NHS. I particularly express my profound gratitude to her NHS consultant at the Norfolk and Norwich University hospital, Nicola Holtom, and her team, and to others providing community services, because it eased Patricia’s path and made a huge difference to all of us who cared for her.
Sadly, for all too many, including cancer patients, this quality of service has not been available. Indeed, for some there has been no relevant palliative care and end-of-life service. This could therefore be a historic moment, but it is far from certain that it will be. I of course accept that Ministers are acting in good faith, but the indeterminate drafting of Amendment 16 leaves rather a lot of wriggle room. For an NHS which is always short of the resources that it needs and that is struggling to cope with its existing workload, it remains a danger that the provision of palliative care will be sparse. The language of Amendment 16,
“such other services or facilities for palliative care as the board considers are appropriate”,
does not make it clear that it will be an inescapable duty of ICBs to ensure that palliative and end-of-life care is a universal service and that there will be a duty on ICBs to provide high-quality palliative care.
The Minister indicated that he does not expect to agree to write into the legislation Amendment 17, in the name of the noble Baroness, Lady Finlay, which specifies in very useful detail what the nature of an exemplary service would be. He said that it would be better to do this by way of guidance. I am encouraged at least to know that it is the department’s intention to provide guidance and to set out models of how ICBs should set about fulfilling this duty. But what measures will be in place to ensure that this happens? What monitoring does he envisage? What reporting requirements will there be?
I have another question which I think is very important: how will the system enable patients and families to know what palliative care is available for them and how to access it? As things are, so often patients and their families are bewildered. They just do not know where to turn amid the complexities of the system, and they often feel discouraged by the responses they receive. They seem to observe the buck being passed between the NHS and social services and between different entities within those services.
I know that Ministers want to do the right thing, but it is important that we do not miss this opportunity to bring about the real thing. If we can be assured that the quality of provision will be as high as that envisaged in the noble Baroness’s Amendment 17, and that the department and NHS England will have systems to ensure that that is so, this could indeed be a transformative moment—a moment after which there will be the prospect that, instead of experiencing a bleak death, as so many people do, they will have a good death, and that will be an enormous consolation to their families, for whom, in their bereavement, the passing of a loved one is the greatest suffering.