“(1AA) The regulations must make provision—
(a) for anyone with a diagnosis of terminal illness to be offered a conversation about their holistic needs, wishes and preferences for the end of their life, including addressing support for their mental and physical health and wellbeing, financial and practical support, and support for their social relationships,
(b) that where that individual lacks capacity for such a conversation, it is offered to another relevant person, and
(c) that for the purposes of section 12ZB a relevant authority must have regard to the needs and preferences recorded in such conversations in making decisions about the procurement of services.”
This amendment ensures that the scope of the regulations as to patient choice includes those at the end of life.
I will not push my amendment to a vote, but I seek responses from the Minister. I want to highlight the issue that we touched on earlier, and I am grateful for his comments, about how end-of-life and palliative care are the responsibilities of these new bodies.
This particularly relates to coming out of the pandemic, but even before the pandemic we had numerous reports from the Royal College of Physicians, the Care Quality Commission, the health service ombudsman and Compassion in Dying about how people approaching the end of life do not feel supported to make the decisions they are faced with, are not always given an honest prognosis and do not know what options or choices they have. I think the issue of patient choice is very important in this clause, and I feel very strongly about it. I think this could generally be stronger in the Bill, but I will particularly highlight what is in my own amendment.
Amendment 93 would enable dying people to have conversations about what matters most to them, which is the first step to ensuring that they are at the centre of any decision making about their own care and treatment, and it starts the advance care planning process. I have been fortunate in that I have had three children, and I talked through my birth plans and my choices for the whole experience very carefully. It was presented to me as part of the process of giving birth. It does not always go well, as we know—we had a baby loss event today in Parliament, which many of us could not be part of.
The principle of choice at fundamental points in people’s lives as a patient is one we have embedded in the health service. Co-production of care for most incidents that we face is a fundamental part of clinical practice. Only at the point when people are most vulnerable, at the end of life, is the principle of advance care planning and co-production in their choices and prognosis something we are still not prepared to contemplate in the health service. It really is as basic as that. If I can make those choices about when I am giving birth, we should be able to make those choices when we are on the pathway of the end of our lives.
The evidence on advance care planning in order to support people on where and how they die is well made. This is about promoting earlier access to palliative care, communication, reducing conflict, helping families understand what is ahead and making the person less likely to have to go through rushed accident and emergency and distressing journeys into hospital. There is a need to start supporting advance care planning, and I would welcome the Minister’s comments on where the Government now think they are on that.
A key part of this amendment is proposed new paragraph (c), on authorities and new ICBs having
“regard to the needs and preferences recorded in such conversations in making decisions about the procurement of services.”
The full value of advance care planning can be realised only when individual care preferences are reflected in actual treatment decisions. Again, that is about empowering patients, something that I hope Members from across the House support.
This is an important clause and an important amendment. We have said on many occasions that we want a model that promotes collaboration, rather than competition, but in doing so it is important that we do not create 42 closed shops, where a patient has little agency over their care. That will not feel right for those individuals and it risks weakening a culture of the pursuit of excellence and the best standards of care. Therefore, enshrining choice for citizens actually becomes more important in a collaborative system, so it is right that this is being addressed.
The Minister might not have a reply immediately on this, but he might be able to work with one from his officials about reports overnight in Nottingham, where there is no choice now over someone’s cancer care and such care is being “rationed”—that was the word used—because of workforce shortages. That is exceptionally alarming and will lead to some dreadful outcomes for people in our city. I hope there could be a follow-up letter about what is being done to switch those services back on immediately.
Turning back to the Bill, it is right that NHS England would have the power to investigate cases and direct an ICB as to how to rectify failure. It is good that there is a provision whereby investigations can be averted by an undertaking from an ICB to rectify the failure directly; that feels like the right level to start at. I am keen to understand from the Minister how he expects a person to enter the system and enter into that mechanism. Are they likely to be expected to contact NHS England directly to trigger an investigation or will there be a local process at an ICB level first before escalation? It would seem reasonable that we should exhaust local options before escalating to the regulator. If that is so, what prescription will there be, perhaps in guidance, if not in the Bill, for the form that that takes, so that an ICB that is not engaging positively with an individual cannot act like a blocker to elevating that? Perhaps we could consider bringing in a trusted third party at a local level—for example, Healthwatch would very well placed.
We saw in written evidence concerns that the current plans might not go far enough. The National Community Hearing Association said in its evidence:
“Existing rights to patient choice do not go far enough and typically only apply to primary care and consultant-led services. Giving patients more choice and control over their care for non-consultant-led services, especially for long-term conditions such as adult hearing loss, results in better health outcomes and helps tackle health inequalities. We would ask the Committee to press the case for the regulations to be made under this power to expand a patient’s right to choice. Regulations can do this by enabling patients to choose an NHS community provider for their hearing care where clinically appropriate. Currently only 50% of NHS regions in England offer patients this choice, resulting in inequalities in access to care.”
I wonder whether the Minister has considered that and could perhaps give us his reflection on the matter.
Amendment 93 is well pitched. It is an important moment to raise this issue, which has come at other times in the proceedings. This is an area that people feel particularly strongly about, for obvious and good reasons. There is the perception that we are not getting this right at the moment and this amendment gives us the chance to do so. I hope that we hear some response from the Minister on how else it might be done.
Let me turn now to the evidence from Marie Curie. Its recent survey of carers during the pandemic found that: 76% said their loved ones did not get all the care and support they needed; 64% said they did not get the care and support they needed with pain management; and 61% said they did not get the care and support they needed with personal care. Clearly, things are challenging at the moment. Indeed, this has been a challenging period, and it will remain so for a significant period of time, as our case in Nottingham demonstrates. Within the next two decades, 100,000 more people will die each year. By 2040, the number of people needing palliative care is projected to be up by 42% because of our ageing population. Again, these are all figures from Marie Curie. It is a significantly growing issue.
In my four years in this place, I have championed the TUC’s Dying to Work campaign, which calls for employment rights to be frozen at the point of terminal diagnosis. This might not be quite the right vehicle for that, but it does enshrine, at the terrible point when a person receives that awful diagnosis, that at least a package of support kicks in for them. I am interested to hear from the Minister how, if not through this amendment, that might be done.
Before I turn to the substance of my contribution, let me say that I am not aware of the specifics of the issue that the hon. Member for Nottingham North raised, but if he writes to me, I will pass it on to my officials and see whether I can look into it for him.
I am grateful to the hon. Member for Bristol South for bringing this important discussion on end-of-life care before the Committee today through her amendment. Amendment 93 would add a provision to the regulation-making powers in relation to patient choice, requiring that any regulations made under the power must make provision so that anyone with a diagnosis of terminal illness is offered a conversation about their holistic needs and their wishes and preferences for the end of their life. This would include addressing support for their mental and physical health, wellbeing, financial and practical matters and social relationships.
Such regulations would require that, where that individual lacks capacity for such a conversation, it is offered to another relevant person, and that a relevant authority must have regard to the needs and preferences recorded in such conversations in making decisions about the procurement of services.
It is of course incredibly important that anyone at the end of their life, whether or not they have been diagnosed with a terminal illness, has the opportunity to discuss their needs, wishes and preferences for their future care, so that they can be fully taken into account. There is already ongoing work across the health and care system to support this aim, including a commitment within the NHS long-term plan to provide more personalised care at the end of life. There is also a recently updated quality statement within the National Institute for Health and Care Excellence on advance care planning.
Furthermore, the ministerial oversight group, which was recently established following the CQC’s review of “do not attempt cardiopulmonary resuscitation” decisions during the covid-19 pandemic, is also developing a set of universal principles for advance care planning to further support health and care professionals in having appropriate and timely discussions with individuals at the end of life. I hope that the reassurance that I was able to offer the hon. Member for Bristol South in our discussion on a previous clause did help.
At this moment, I will pause briefly to join the hon. Member for Nottingham North and others in paying tribute to the work of Marie Curie, which does amazing work day in, day out. Through its work on this, it has helped to raise, in the context of the Bill, the profile of this issue.
I should also say to the hon. Gentleman that I recall his work, when we were relatively new Members in this place, on the TUC’s Dying to Work campaign. I have considerable sympathy with the campaign, and I pay tribute to him for his work back in the days when I was a Back Bencher and able to engage more directly with campaigns. I also pay tribute to the TUC for its work in this area, because it is extremely important. I hope that he will forgive me if I do not stray into other Departments’ policy remits, but the issues that he was bringing to the fore were important ones and that continues to be the case, so it is right that I acknowledge his work.
We know that patient choice is a powerful tool for improving patients’ experience of care, and we intend to ensure that effective provisions to promote patient choice remain. I do not feel that it is appropriate for it to be written into primary legislation. I am grateful that the hon. Member for Bristol South said she does not intend to press the amendment, but she makes her point.
I am happy to write to the hon. Lady to communicate that information to her.
We know how important patient choice is, and not just in terms of individual choice, although it is of course vital in that context, but also in helping drive the system to continuously improve. We take the view that it should be determined through regulations. We have chosen that approach to allow the legislation to be flexible and to reflect changing priorities and new policies in relation to patients’ rights to choice.
The shadow Minister raised the process and mechanism for complaints. The individual would in the first instance complain to the ICB, as the commissioner and main body providing and co-ordinating health services in their locality. If they are not satisfied with that, they could then escalate that complaint to NHS England. It is not straight to the top, as we all know through our casework. We recognise and advise our constituents to go through the complaints process, and only at the final stage does it reach Ministers and NHS England or ombudsmen or other national bodies. That would be our approach.
Regulations on patient choice have previously been made under section 75 of the Health and Social Care Act 2012. Opposition Members will of course be deeply saddened that that section is being repealed by the Bill, including its procurement elements. In so doing, the Bill also revokes the regulations covering patient choice, so clause 67 ensures that patient’s rights to choice continue to be protected.
The clause adds similar powers, including those relating to guidance and enforcement of the standing rules, into the National Health Service Act 2006, and introduces a requirement for the Secretary of State to make regulations on patient choice. The power to make guidance and enforcement of patient choice will be held by NHS England, following the planned merger with NHS Improvement, with the complaints process that I set out earlier. The clause will give NHS England powers, which NHS Improvement currently holds, to resolve any breaches of patient choice.
There is currently a wide range of choices that people should expect to be offered in the NHS services they use—for example, choosing a GP and GP practice and choosing where to go for your appointment as an outpatient—and the clause will allow for those and other aspects of patient choice to be preserved. The clause will make sure that, under the new model, bodies that arrange NHS services are required to protect, promote and facilitate the important right of patients to make choices about who provides those services.
We know that patient choice is an incredibly powerful tool for improving patients’ experiences of care. The clause will ensure that effective provisions to promote patient choice remain, will strengthen existing choice rights and will continue to make them a requirement of the decision-making bodies that commission healthcare services. Without the clause, patients’ right to choice would be removed along with section 75’s removal. NHS bodies would not be under duties to protect and promote patient choice. Clause 67 reinserts the right and inserts schedule 11.
Schedule 11 provides further details of the powers given to NHS England to resolve any breaches of the patient choice requirements imposed on an ICB. It requires NHS England to publish a procedure outlining how it will resolve failures of an integrated care board to comply with patient choice, and lays out the reporting and appeals process. It also allows NHS England to treat inaccurate, misleading or incorrect information from an ICB as failure to comply, which will, I hope, encourage the full and accurate engagement of an ICB in addressing a failure.
People should expect to be offered a wide range of choices, as I have alluded to, and the clause and schedule will allow for that. NHS England will be able to ensure that ICBs are required to protect, promote and facilitate that important and powerful right. We know how important that is for individuals and for driving the right behaviours in the system and to improving care.
I am grateful to the Minister for highlighting this issue with such importance. We know that patient choice is vital when a person gets to those end-of-life stages and has a terminal illness. Could I request that consideration is also given to timeliness around choice-making? For some people, particularly those suffering with motor neurone disease, their disease can move quite swiftly, so timeliness in those conversations is important. I would be grateful if consideration could be given to that, and I am heartened by what I hear from the Minister.
My hon. Friend is absolutely right about timeliness, both from the system, in initiating those conversations, and as something that all of us need to pay heed to as individuals. Before the pandemic and before she stood down at the 2019 election, I held an event in my constituency with the former right hon. Member for Loughborough, Baroness Morgan of Cotes, about thinking and making choices early and preparing ourselves for getting older—things like preparing a will and powers of attorney. All too often, for very understandable psychological reasons, many of us do not want to think about such things, because they are an intimation of mortality. However, it is important that as individuals and as a system and a society we think and plan early, because it can make such a huge difference to the quality of our older years or the end-of-life period.
Therefore, if I may, Mr McCabe, I commend clause 67 and schedule 11 to the Committee.