Health and Social Care Bill

My Lords, my Amendment 142 has been grouped with this amendment. I have brought it forward because I am anxious that when we talk about ““patient and public involvement”” we should be clear as to exactly what we mean by it. I am grateful to my noble friend Lady Jolly, who has also put her name to the amendment. I am also anxious that we embed what I will call PPI for shortness—patient and public involvement throughout healthcare in all its forms. I say so in the knowledge that few people understand what this means. However, no one understands it better than my noble friend Lord Howe. He was a doughty fighter for community health councils, those much beloved organisations that knew how to campaign and influence the delivery of services. The culprit sits before me on the opposition Benches. When I was chair of the Brighton Health Authority I had a huge respect for my CHC. Indeed, we even commissioned it to carry out surveys within the NHS. The effect was electric: no punches were pulled and the pressure on us was irresistible. It really knew what was being delivered, where the glitches were and where services were inadequate and needed improving, and it was not shy in making our shortcomings very public indeed. The CHCs had power and could refer proposed changes in services directly to the Secretary of State. The subsequent inheritors of their responsibilities—patients' forums and LINks—have been systematically neutralised to ensure that they do not have the power to be really effective; that they are not inconvenient bedfellows; and that, despite the undoubted commitment of individuals, they can be largely ignored. At last we have an opportunity to put matters right and to show that we have genuine credentials in making patient and public involvement a force for good, ensuring that patients and the public are the heart of their NHS. I was encouraged when in one of our earlier debates my noble friend, in answering an amendment, mentioned that the Secretary of State required four tests for the reconfiguration of services, one of which was robust PPI. I had an interesting letter from my noble friend dated 2 February which again showed his clear commitment to effective PPI. However, the Bill does not seem to match up to that commitment. Different wording is used for PPI in different parts of the Bill—a court of law would surely assume different intentions—and the wording is weak in places. There are three types of involvement. The first is shared decision-making with individual patients on their care, to which the remainder of these amendments relate. The second is the HealthWatch England and local healthwatch structures through which patients and the public feed in their views—the way in which people start a conversation with the NHS. The third is PPI by the service in its decision-making—the way in which the service starts a conversation with local people and the subject of this amendment. No business would attempt to plan its products or its services without doing market research. If it did, it would fail. We expect the same for the NHS. However, PPI is more important than just market research: it imports the values that we as a society expect from the NHS, making sure that it thinks as we think. PPI must be in the DNA of the service so that those who plan and run it feel as if they are planning and running it for their own families and looking after their own mothers in that hospital bed. The PPI requirement was introduced in the Health and Social Care Act 2001 in response to the Bristol Royal Infirmary public inquiry. At Bristol, between 1991 and 1995, "““one-third of all the children who underwent open-heart surgery received less than adequate care””," and up to 35 children under one died as a result. As Bristol concluded, "““vulnerable children were not a priority, either in Bristol or throughout the NHS””." What an indictment. These are catastrophic failures and we must not forget them. Sadly, evidence shows that we have not yet succeeded in making the NHS as a whole think as we think. We need look no further than Mid Staffordshire. Bristol recommended that: "““The involvement of the public in the NHS must be embedded in its structures: the perspectives of patients and of the public must be heard and taken into account wherever decisions affecting the provision of healthcare are made””." The report goes on to say: "““The public's involvement in the NHS should particularly be focused on the development and planning of healthcare services and on the operation and delivery of healthcare services, including the regulation of safety and quality, the competence of healthcare professionals, and the protection of vulnerable groups””." My amendment defines what makes effective PPI across the commissioner, provider and regulatory system, as Bristol recommended. Triggers for the duty will vary depending on the body, and it must always be proportionate. Monitor is covered in my Amendment 166, which we will be debating later. My noble friend explained to me in his letter that statutory guidance would cover these matters, as it does now. Mid Staffordshire has demonstrated that this approach simply does not work. Furthermore, the duty of autonomy in Clause 4, even as amended, gives all bodies in the Bill discretion to challenge anything—such as statutory guidance—as being unduly burdensome. We must therefore have crystal-clear, comprehensive requirements for effective PPI as explicitly defined on the face of this Bill. There are three ways in which the clauses in the Bill fall short of this. The first is: telling, not asking. The duty can be met merely by providing information without getting any response or taking any notice of it. Involvement means not assuming that you know whether an issue is something patients only need to be told about, but asking them. The second is: theory, not reality. Patients are not required to be involved in finding out whether plans, proposals or decisions actually advantage or disadvantage patients in practice. The third is: nothing about us without us. Patients must be involved in all functions affecting patients, such as quality improvement or health inequalities, not just in commissioning. However, the problems are greater than these. My noble friend's letter to me seems to suggest that, as commissioning and providing have been split in the Bill, PPI is to be similarly split. This would enable the PPI buck to be passed between commissioner and provider and leave no one responsible for guaranteeing that effective PPI happened if providers—private or NHS—failed to do it. Commissioners are likely to use the Department of Health model contracts that do require providers to involve patients; and NHS providers have their own statutory duty. So far, so good. However, once commissioners have granted such contracts, they can wash their hands of involvement by the private or NHS foundation trust provider because they no longer have ongoing responsibility. Subsection (1) of my amendment defines the three involvement elements: giving information, seeking comment on it, and inviting participation in monitoring whether patient benefit emerges at the end of it all. For example, the duty now relates only to designing a commissioning specification for accident and emergency, not monitoring whether it actually works in practice. Subsection (2) involves patient representatives and carers as well as patients. Patients on mental health section may not be able to get involved in commissioning, but those who can represent their interests, as they have previously been on sections themselves, should be able to do so. The NHS outcomes framework, against which we expect commissioners to perform, includes: "““Enhancing quality of life for carers””," so we must make sure that they are involved. Subsection (3) gives the commissioners a lead responsibility for PPI across the local health economy to avoid buck-passing between organisations. Subsection (4) applies involvement to all the relevant functions of the NHS Commissioning Board and CCGs, subject to the existing proportionality limitation. The CCG should, for example, not attempt to address health inequalities without involving those who suffer them. I have thought a great deal about this issue over many years, as has my noble friend the Minister, and over the past weeks he has been hugely generous with his time in talking to us about it. Your Lordships have spoken often of the strengths of the NHS and the warm place that it has in the hearts of the people. I strongly support its remarkable ethic that whether you are young or old, black or white, rich or poor, you can get treatment, largely free at the point of use. But none of us can deny that its underlying problem is how little influence we, users and taxpayers, have in a near-monopoly service that is organised and run by those who work in it. We need to reorder the balance, and my amendment seeks to do just that.