Health and Care Bill

Baroness Cumberlege Excerpts

Lords Hansard - Part 2 & Committee stage
Tuesday 18th January 2022 Lords Chamber

[Lord Hunt of Kings Heath (Lab)]

My Lords, I am grateful to the noble Lord, Lord Clement-Jones, for speaking so eloquently in support of this group of amendments. There are a number of amendments relating to data in this Committee and they fall into three categories. The first category, the group that we are debating today, is about the prioritisation of the digital transformation in the NHS. The second group looks at specific patient groups and the potential of data to improve their care outcomes. The third set is about confidentiality of data as far as patients are concerned. My view is that all three run together.

Like the noble Lord, Lord Clement-Jones, and the noble Baroness, Lady Cumberlege, I am enthusiastic about digital transformation in the NHS; indeed, I believe it is the only way we can hope to meet the challenges that healthcare faces over the next 20 or 30 years. However, there are two conditions. One is that the integrity of patients’ data is assured for individual patients. That has not always been the case in the past, and the debacle of care.data is a salutary warning of what can happen if we do not protect patient information in an appropriate way.

The second condition is resources. I was very glad that my noble friend referred to the issue of resources and to the Wade-Gery report, which is the most recent report looking at the arrangements to support digital transformation in the health service. Wade-Gery reported that

“transformation funding is … split between revenue and capital and dispersed across the organisations. Tech funding is variable, often diverted and not necessarily linked to strategy and outcomes, incentivising either monolithic programmes or small-scale initiatives.”

She commented:

“The requirement for digital transformation in other sectors has driven up the proportion of their spend on digital and technology”.


It has been well-known, for many years, that the NHS locally has not been spending sufficiently on data and data transformation. The latest estimate from NHS England is that the NHS spends less than 2% of its total expenditure on IT, while the noble Lord, Lord Darzi, and the IPPR suggest that this should be nearer 5% by 2022. I say to Ministers that, unless they can find ways to ensure the NHS starts to spend at that level, we are simply not going to achieve the kind of transformation we want.

One way to do that is to ensure that, at the ICB level, there is an official charged with driving this forward at the local level. We know, in general, in relation to boards of the health service, that the data/digital leadership often does not have a seat, in contrast to many organisations. This is why we think that needs to change. Overall, we believe this set of amendments would enable the Government and Parliament to show how important it is to prioritise the kind of digital transformation that we want to see.

[Baroness Cumberlege (Con)]

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.

--- Later in debate ---

I apologise for taking so much of the Committee’s time on this, the first of my amendments, but I thought it important to set out clearly the rationale behind them, based on practical experience on the ground over many years. I beg to move.

[Baroness Cumberlege (Con)]

My Lords, I support these amendments and I especially support the noble Lord, Lord Mawson. It was typical of him that he started our thinking about what health is; I am sure there are many answers, but I think one of them might be integration—not just integration on the biggest scale but in terms of neighbourhoods, communities and what we now call place. That is so important. Those are the building blocks of all we are trying to do in the hierarchy of the National Health Service.

I am inspired by the noble Lord. He is a man of infinite resource and sagacity, an entrepreneur and, above all, a great achiever, based on solid principles which he believes in and, like a man of the cloth, is anxious to spread to others. He does so with really good effect.

It is no accident that I entitled my first report to the Government, many years ago when I was Mrs Cumberlege, Neighbourhood Nursing: A Focus for Care, as I believe the neighbourhood—or, in today’s parlance, the place—is all-important. This is what colours how people think, behave, succeed and, sometimes, fail. The noble Lord, Lord Mawson, has shown how even the most deprived areas can be rejuvenated and thrive with strong leadership, purpose and commitment. The noble Lord’s deep unshakeable philosophy is that patients, people and the local community should be the movers and shakers and be in control.

I want to mention Bromley by Bow, because it was a really innovative and new way of thinking about things. I remember visiting it years ago, not quite when it first started but when it was beginning to really thrive. Bromley by Bow was the first health centre in the country to be owned by the patients. Founded in 1984, it began with just 12 elderly patients, a rundown church, and just £400 in the bank. Today, by applying entrepreneurial principles to challenge social and health issues, it now has more than 250 staff. It is responsible for 43,000 patients, as the noble Lord said, and four health centre sites across Poplar. It operates on 30 sites even more widely across east London. It has supported local entrepreneurs. What is really interesting is that it has built 93 small and medium-sized enterprises. This is people helping themselves and ensuring that there is employment through a charitable structure, a housing company, which is controlled by the residents and now owns 10,000 properties and 34% of the land in Poplar.

This is a remarkable achievement in a very poor part of London. It is effective because it recognises that health and wealth are profoundly connected—not in huge municipal buildings and ivory towers remote from their populations but by the people who live and work in that area. The schemes are intertwined with the population. They are neighbourhood schemes and recognised as such. They are valued by being part of the destiny of a place in which local people live and work.

I visited Bromley by Bow in the early days, as I said, and I am really disappointed by my GP practice in the village in which I live and grew up. My father, one of two GPs, knew his patients literally inside and out. He knew who was getting off with whom. As his children, the first thing we learned was confidentiality and how to respect it, because we heard all sorts of things. He managed to get a health centre built. It is called that: above the entrance to the building it says, “The Health Centre”, but today it has been renamed the medical centre. It is a service that is not about health but about transacting to patients what the doctors think they need. The practice even shuns social prescribing, which is prevalent in many areas. It is also very careful not to involve the community. The friends of the health service have become disillusioned. They were established about 20 years ago and they are fed up with what is going on. Two weeks ago, they closed that organisation.

The noble Lord, Lord Mawson, in his Amendment 41A seeks to use the new world of integrated care boards to ensure that local representation is guaranteed. We have had a lot of debate in this Committee about who should be on what board and so on, but in listening to those debates—there was a big one last Tuesday—I was very struck by people talking about the big battalions. I could see that people were trying to ensure places on the integrated care boards that were represented by the big battalions. That is understandable. They are the component parts of the NHS. There are parliamentarians who see this as the only way forward.