My Lords, I support these amendments but first I believe in putting right wrongs. I failed to declare my interests in last Tuesday’s debate, so I took advice from the registrar. He assured me that I do not have to give a full account of my life and times, which is a great mercy to everybody, but I do have to declare what I am currently involved in and the remunerations. I serve on the Maternity Transformation Board, which is owned by NHS England, and the maternity Stakeholder Council, which is also supported by NHS England but is much more of a free agent.
I thank the noble Lords, Lord Clement-Jones and Lord Hunt of Kings Heath; it was a very rounded, fulsome and clear introduction to these amendments. I want to pick up the issue of trust, because both noble Lords linked trust and confidentiality. That is absolutely essential. We will not get the support or trust of the public if we do not respect their confidentiality, and I will say a word about that in a minute. I support Amendments 84, 134, 140 and 160—I have added my name to them. I also support Amendments 70 and 73, and wish to comment on those.
I strongly support digital transformation. Amendments 84, 134 and 140 place a duty on integrated care boards to promote digital transformation and to produce their own five-year plans. It will need money, so Amendment 160 requires the NHS to spend at least 5% of its capital allocation to achieve it. That is right, as digital needs sustained resource—it is not simply a “nice to have”; it is absolutely essential for the future of our services. I have talked to visitors from the USA and cannot believe how antiquated they think our systems are. In many places, they are still in the dark ages, so we have to invest in digital.
I support the increased use of digital technology in healthcare largely because of my involvement in two major inquiries into NHS services in the last few years. One evening in 2014, I had a telephone call from Simon Stevens, the chief executive of NHS England,
before he was knighted and welcomed into your Lordships’ House, where he has already made a very significant contribution. He invited me to chair an inquiry into maternity services for England. The noble Lord has a sense of humour: he gave me nine months in which to deliver.
I set up a panel and we delivered in time, calling our report Better Births. Our 28 recommendations were accepted by NHS England, which then set up the Maternity Transformation Board and the Stakeholder Council, on which I have declared my interests. The Stakeholder Council is interesting because it is full of a wide range of people. A lot of charities, in particular, are on that council, and add a lot to the work that we do.
Two of the 28 recommendations are particularly relevant to this Bill and these amendments. We recommended that every mother should have her own digital maternity record, which she would create with her midwife. This record would set out the plans for managing her pregnancy, the birth and aftercare, which is so necessary for the baby, the mother and, I would add, the family. The mother’s record would then be accessible, with her permission, to all those contributing to her care. In future, we could see it being part of the child health record, and possibly the lifetime health record of the mother.
Although some progress has been made on improving access to NHS health records, we are still some way from achieving this, or the ambition set out in the NHS Long Term Plan for every citizen to have their own personal health record. We need to galvanise the NHS to move quickly and capitalise on the enormous potential that digital offers. That is what these amendments are designed to do. I am sure my noble friends on the Front Bench will consider them carefully and assess the potential that they offer.
I also recently had the privilege of chairing an investigation into the safety of medicines and medical devices; our report was called First Do No Harm. Thousands of women and children suffered avoidable harm relating to the medicines and one of the medical devices which we reviewed. They continue to live with the terrible consequences today. This harm did not take place in one isolated moment; it has spanned years and even decades. Why was it not detected and stopped? Many people could have been spared the misery it has been for them and their families.
Part of the answer to that lies in the absence of data. We found that data was not collected or that, when it was, there was no attempt to link data to identify patterns of concern. Paper records, such as there were, were incomplete, dispersed, archived or destroyed. The healthcare system could not tell us how many women had taken the epilepsy drug sodium valproate and gone on to have damaged babies. It could not tell us how many women had pelvic mesh implants, or which implants were used, or where and when.
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We were astonished and deeply worried: the system was flying blind. We said that basic information about implantable devices such as mesh was so important that it must be collected, and it must be mandated.
We need the name of the patient, the unique device identified, the surgeon, the hospital, and so on. At least then, if a concern about the device is subsequently raised, it will be possible to trace those who have been affected.
The previous Secretary of State agreed with us and issued a mandate for a database. Some noble Lords will remember the Medicines and Medical Devices Bill. It involved a great deal of discussion and persuasion in this House, but many of our amendments had government support and were enacted. Through these debates, the concept of the independent patient safety commissioner was discussed and strongly acclaimed. I am delighted that last week, an advertisement was published on the role, context and responsibility of the commissioner by the Department of Health and Social Care. I thank the department, the Ministers and the previous Minister for their unstinting encouragement and support, which have enabled this to happen. We hope that some outstanding candidates will apply for this position.
Of course, mining data will be an essential tool for the commissioner’s office. It is only by linking access and linking across that we will be able to say: “Stop. This doesn’t look right. We need to investigate and ensure that we achieve a safer service.” Digital data is powerful; it is an enabler and it can be a force for good. But we must treat patients’ records with care and we must respect the person to whom they belong. That is not the doctor or the NHS: that is the patient themselves. Later in Committee, we will consider amendments that address the sharing of records and consent. I am sure that we will have a lot of debate on that.
Amendments 70 and 73 are very important too. They would ensure that patients are made aware of new technologies and treatments and, crucially, that patients are involved in decision-making about these treatments and technologies. I know from the experiences that we heard about and the huge amount of evidence that we received in our review that that did not happen. That contributed to avoidable harm on a really shocking scale. Likewise, I have no doubt that if greater progress on digital records had been made at that time, the questions that we had in our review about how many people had been harmed, when and how, would have been answered. Digital records enhance patient safety, so I strongly support these amendments.