Health and Care Bill

Report (1st Day) (Continued)

Clause 16: Commissioning hospital and other health services

Amendment 15 not moved.

Amendment 16

16: Clause 16, page 13, line 42, at end insert— “(ga) such other services or facilities for palliative care as the board considers are appropriate as part of the health service,” Member’s explanatory statement This amendment would specifically require integrated care boards to commission such services or facilities for palliative care (including specialist palliative care) as they consider appropriate for meeting the reasonable requirements of the people for whom they have responsibility.

My Lords, on behalf of my noble friend Lord Kamall, I beg to move Amendment 16 in his name.

The passionate and emotive speeches made on palliative care in Committee left a deep impression on me, as I am sure they did on all noble Lords. Since that debate, the Government have carefully considered the compelling points made by noble Lords from across the House, which we seek to address through this amendment. In moving it, it is right for me to pay particular tribute to the work of the noble Baroness, Lady Finlay, who has done so much to drive this issue forwards.

We recognise that there are variations in access to palliative care services across England. Although we are clear that clinical commissioning groups have always been required to commission appropriate palliative and end-of-life care services as part of the comprehensive health service, we recognise the value of making that clear in the Bill in relation to integrated care boards. We know how important it is that people receive high-quality, personalised palliative care that is built around their individual needs and takes account of what matters to them and those important to them.

These services often include the support of a range of health professionals. For those with more complex needs, this will include access to multi-professional specialist palliative care. These teams provide the essential education and training in the field, supporting research and rapidly disseminating what works. Advice and support need to be available at all hours, wherever patients are, working in an integrated way with other services to ensure that patients can access the support they need early to avoid unnecessary distress.

To make this clear, Amendment 16 would add palliative care services to the list of services that an integrated care board must commission. The amendment clarifies that the commissioning of palliative care is integral to the duty of integrated care boards to commission their part of the comprehensive health service. I am especially grateful for the helpful and constructive way in which the noble Baroness, Lady Finlay, has worked with Ministers and officials to develop this amendment. Without wishing to anticipate her remarks in relation to her Amendment 17, may I just say that, in our view, the kind of detailed provision contained in it would be better covered in statutory guidance, where it can be more fully explained and described? I beg to move.

My Lords, the noble Baroness, Lady Brinton, and the noble Lord, Lord Howarth of Newport, are taking part remotely; I invite the noble Baroness to speak first.

My Lords, I shall speak to Amendment 17, to which I have added my name, but first I thank the Ministers for listening to the noble Baroness, Lady Finlay, and others, and for tabling Amendment 16. I also thank Together for Short Lives for its helpful briefing.

Your Lordships’ House had a moving debate in Committee that captured the practical and economic need for the wider range of provision of palliative care, and how ICBs can properly fund and plan for it. In Committee, the Minister, the noble Lord, Lord Kamall, said that

“ICBs will be required to have regard to the National Institute for Health and Care Excellence guidelines in their provision of services, as CCGs currently are … NHS England will continue to support commissioners of palliative and end-of-life care services through their palliative and end-of-life care strategic clinical networks. These networks support the delivery of outstanding clinical care by ensuring palliative and end-of-life care is personalised for all.”—[Official Report, 18/1/22; col. 1637.]

The noble Lord’s Amendment 16 provides the specialist services we sought, but it says only

“as the board considers … appropriate as part of the health service”.

Although I join other noble Lords in thanking the Ministers for the amendment, please can the noble Earl confirm that, although the wording of the amendment requires ICBs to commission palliative care “where appropriate”, it is his intention that all ICBs should deem it appropriate, and therefore all of them should commission palliative care services, including for seriously ill children and their families? We know that the provision of palliative care services is very patchy. Will he provide statutory guidance to supplement the amendment and support ICBs to interpret their responsibilities, including for children? When will this be available? What action will Ministers take to ensure that ICBs have the financial resources needed to fulfil the new duty? Finally, what action will the Minister take to ensure that there are enough professionals with the skills and experience needed to provide the palliative care for children that ICBs will have a duty to commission?

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.

My Lords, I must declare that I am a vice-president of Marie Curie and of Hospice UK. I am most grateful for the kind and generous words that have already been said about me and the work on this amendment. I must thank both Ministers, the team and the officials for all the work they have done on this subject. I also thank the charities Marie Curie, Sue Ryder, Hospice UK, Alzheimer’s Society and Together for Short Lives, and particularly those people who have generously shared their experiences of supporting someone they love who is living with a terminal illness.

Palliative care is not an add-on or aftercare, but must be integrated as an essential part of NHS provision. As we move forward, I want to pick up the point that the provision of services for people who need palliative care must include specialist palliative care as core. Specialist care is provided by multiprofessional teams. These doctors and nurses have specialist training, usually working with allied health professionals who also have become specialised in their way. Hospice care assistants in health and social care have also been specially trained, and others, including multidenominational services and counselling and bereavement support for children and adults, are all part of the wider provision.

People need support in every setting, whether at home or in a care home, hospital, hospice or some other community setting, which includes places such as prisons. In all these settings, the specialist palliative care team works with local clinicians to provide expert advice at all times of the day, every day, supporting health and social care professionals who are providing care to the person and their family. Sadly, as has been said, palliative care is currently patchy, and it must be available wherever people are, as the noble Lord, Lord Howarth, said in his remarks. It must be available for all ages, to reflect on the comments of the noble Baroness, Lady Brinton.

We are at a milestone moment, and I sincerely hope that this amendment really will be game-changing. It is the start of a new journey, and this is the first step for the Department of Health and the NHS to guide integrated care boards as they look to develop over time the services that their local population need. Now delivery plans need to be communicated to integrated care boards and providers as they work together on the journey to integration and ensure fair access for all to the palliative care that people desperately need, often at the most vulnerable time in their life.

My Lords, I pay tribute to the noble Baroness, Lady Finlay, for her outstanding work in this area. I was very moved by the remarks of my noble friend Lord Howarth in tribute to the care given to Baroness Hollis, who was such a tremendous force for good in your Lordships’ Chamber over many years.

Can the noble Earl clarify the point that has already been raised? In the letter from Ministers of 26 February it was said that the amendment would add palliative care services to the list of services that an ICB must commission. On the face of it, the amendment seems rather more permissive. Proposed new subsection 3(1) in Clause 16 states:

“An integrated care board must arrange for the provision of the following to such extent as it considers necessary to meet the reasonable requirements of the people for whom it has responsibility”.

There is then a list, which starts with “hospital accommodation”, which the ICB must arrange for—then on page 17 are a couple of provisions that seem rather more permissive.

The nub of the issue is this: we have fantastic palliative care in the mainly voluntary sector as well as in the National Health Service itself, but it is very patchy. The health service has been very reluctant to give long-term certainty to hospices and other providers of palliative care services, insisting on short-term contracts. The real question to the noble Earl is this: will this change as a result of this amendment? Where is the beef that will actually get the message across that we expect the health service to do a lot better than it has been doing in support of palliative care services?

My Lords, I declare my interests in the register. I join in thanking the Government for having listened in Committee. I hope that this will make a difference not just to the lives of those whose lives are shorter but also their families, so it is very welcome. I pay tribute to the noble Baroness, Lady Finlay, but also to my friend, the right reverend Prelate the Bishop of Carlisle, who put his name to Amendment 17.

As I say, I welcome this amendment. As the chair of the UK Commission on Bereavement, I have been reminded recently of the inconsistency of palliative care, which other noble Lords have spoken of this evening. It affects not only those who require palliative care but also their family and friends, and it leaves a legacy into bereavement, which we should not underestimate. I too was reassured to hear the Minister say that palliative care must be commissioned, but I share again the concern of the noble Lord, Lord Hunt. In Amendment 16, the word “appropriate” is used, and it is not quite the same thing. Could the Minister reassure the House about the Government’s expectations regarding the nature of palliative care services that the ICBs will commission? How will they ensure that that is delivered in a way that creates consistency? It is care that is rightly deserved by people in our communities, which also reflects the skill and hard work of our palliative care practitioners

My Lords, I too congratulate the Minister and his officials on listening to the House and the strong representations he received in Committee on this issue.

I welcome the Government’s amendment. I add my tribute to the work of the noble Baroness, Lady Finlay, as well as the many Members of this House and the campaigns of organisations such as Marie Curie in getting us to this point. It is wonderful that the symbol of Marie Curie is a daffodil, and we are here today on St David’s Day being led by the noble Baroness, Lady Finlay of Llandaff. That is very appropriate.

I disagree with the noble Lord, Lord Howarth of Newport—this is an historic moment and a huge step forward. It is the first time in the history of the NHS that there will be an explicit requirement to commission palliative care. I declare my interests as chair of the Scottish Government’s National Advisory Committee for Neurological Conditions and a trustee of the Neurological Alliance of Scotland. Many people with long-term, progressive conditions have not been able to access palliative care at an early enough point. Not only would this ensure better outcomes for patients, but it would also be a better use of NHS resources. I hope that the result of the Government’s amendment will ensure that these people get better care, including the palliative care they need. I also hope that ICBs will recognise the difference that they could make.

I welcome the opening remarks of my noble friend Lord Howe about taking the criteria set out in Amendment 17 in the name of the noble Baroness, Lady Finlay, and to which I was happy to add my name. It provides a helpful set of guidance for ICBs to follow, based on standards. I echo the question of the noble Lord, Lord Howarth, on ensuring that we have the right reporting requirements. I am grateful to hear that the Government will be developing statutory guidance to ensure that we put the necessary tools in place. However, I have been concerned to learn, in my meetings with NHS England, how—as far as I have been able to ascertain—it reports on services, rather than medicines or specific procedures. When reporting on NICE guidelines for services, NHS England seems to rely on “noise in the system” to ensure whether they know that something is happening or not. I share some noble Lords’ worry about the word “appropriate”. If we develop statutory guidance based on the criteria set out in Amendment 17, I hope that the risks that the word “appropriate” might continue to see a postcode lottery will somehow be allayed.

My Lords, I shall speak briefly to add my very strong support for Amendment 17, promoting the provision of specialist multiprofessional palliative care services. I also welcome, and will comment on, the Government’s Amendment 16 on the same topic. Alongside all other noble Lords, I pay tribute to my noble friend Lady Finlay for her tireless work to improve palliative care services.

It is of course most welcome that the Government have tabled an amendment in this field, but their amendment leaves it to the ICB to decide what standard and extent of palliative care services are “appropriate” to meet what they deem to be the “reasonable” requirements of their populations—the Government’s words. What do these terms mean? Does the Minister accept that the amendment does not ensure that adequate specialist palliative care services will be available across the country? That is what we all desperately want to see. I hope that, in his response, the Minister can define these terms. What do the Government mean by “appropriate” palliative care services and a “reasonable” level of such services?

As I said in Committee, it is unbelievable that the NHS provides services according to need throughout our lives, until we are dying, when of course our health needs are at their greatest. At that stage, precious hospices have to raise their own money, as others have said in the past, to finance their doctors and nurses to care for the dying. Inevitably, hospital beds lie empty. Some 50% of beds in a hospice I visited recently were empty, because it simply did not have the staff to deal with patients in those beds. Can the Minister confirm that the Government will provide statutory guidance to supplement Amendment 16 and clarify what they mean by the terms “appropriate” and “reasonable”?

As things stand, I strongly support the amendment tabled by my noble friend Lady Finlay. As we die, we should all have high-quality palliative care services. We can then expect that, when assisted dying is legalised, a reasonably small percentage of dying people will suffer unbearably, despite benefiting from top-quality services, because of course there are situations when the best possible palliative care services have done everything they possibly can and yet certain patients suffer unbearably. We need a change in the law to ensure that those patients have control over the suffering that they can reasonably tolerate.