Tuesday 14th November 2023

(1 year, 1 month ago)

Lords Chamber
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Baroness Morgan of Huyton Portrait Baroness Morgan of Huyton (Lab)
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My Lords, as ever in these debates, the breadth of experience in this House is quite outstanding. I certainly hope that the new Foreign Secretary knows what he is facing when he comes here.

I start by drawing attention to my interests as set out in the register, particularly as master of Fitzwilliam College, Cambridge, and chair of the Royal Brompton and Harefield hospitals as part of Guy’s and St Thomas’. I am also a trustee of the National Heart and Lung Foundation.

Others have spoken comprehensively about the central importance of science and technology to the future success of the UK economy in attracting inward investment, increasing productivity and creating highly skilled jobs. I will not repeat all that. Moreover, and obviously, advances in science and tech are essential to address society’s big challenges and can and must have a global impact on health, wealth and sustainability. It would perhaps be remiss of me not to say that the economic impact of the University of Cambridge is nearly £30 billion annually—80% of which is generated by spinouts, as well as commercial activity carried out there. However, I use that only as an indication that our universities around the UK boost the UK demonstrably and are crucial to any discussion about regional economic growth.

This does not happen by chance. The future of such scientific research and commercialisation depends on long-term commitment, especially from government, and ambitious targets for R&D spending—we must aim to head the G7 on that. It also depends on longer cycles, of 10 years or more, which will provide stability for researchers, innovators and investors; reduction up front on visa costs to make the UK competitive in the battle for talent, as we have heard; and evidence-based rather than populist policies around net zero, to rebuild confidence in the UK’s global ambitions as a serious science nation.

I want to use my remaining short time to talk about the opportunity of further strengthening the UK’s life sciences sector and the dangers if we do not get this right. I was a member of your Lordships’ Select Committee which examined the sector deal, the Life Sciences Industrial Strategy, and the Bell report, a while back. A lot has happened since then, a lot of it good but not all of it. However, it has still not been completely gripped across government. I want to focus on the arc that makes the UK unique: excellent universities undertaking basic science and translational science with leading hospitals; central organisation through NHS England and world-class regulators, including NICE; highly developed pharma and biotech beyond the golden triangle, increasing, as we heard earlier, in the north-east; and a universal health service, where the whole population is essentially in the same system, which is very different from virtually all our competitors.

This is, of course, the massive opportunity, the golden nugget. Crucially, we need the NHS and government to support, recognise and reward innovation and move away from heavyweight bureaucracy, but that is for another day. However, above all, the opportunity presented to the UK life sciences sector depends on trust. The key relationship remains between medical personnel—whether clinicians or nurses—and patients. Data is the foundation to realising that potential to lead to amazing medical breakthroughs and for improved patient care and outcomes.

The noble Lord, Lord Patel, talked about the importance of the work that is still to be done on data, and I endorse everything that he said. The requirements are obvious and I know that they are appreciated but they are not there yet—collection of data that is standardised across the system, the ability to link systems properly, access to NHS data by third parties but within clear rules, and, crucially, public acceptance of the need for the data to be used to enable short-, medium- and long-term patient benefit, so again it is trust. That crucial trust is easily damaged. It is easy to be captivated by remarkable breakthroughs. We hear this in the media every day. However, there is a gap between the stories and the rollout that can be disappointing at best and heartbreaking at worse.

An example I know well illustrates this. At the Brompton, we have a long-established cystic fibrosis service. Over the years, our clinicians saw young lives severely narrowed and cut short. They also got to know families who put immense time, emotional back-up and resource into supporting children and relatives. Therefore, they were delighted when the new drugs were at last developed that would transform—it is not too strong a word—the quality and length of the lives of their patients and future patients. The first drug got the go-ahead in 2019 and the noble Lord, Lord Stevens, then head of the NHS, said that the day marked an important and long-hoped-for moment for children and adults living with CF.

There was a deal—full marks to the noble Lord—to roll out the drugs at a price that was acceptable then to the NHS, while NICE undertook its appraisal. However, that work has now concluded. NICE has reported that the medications are highly effective for people with CF. The effectiveness is not in doubt. It is not marginal but dramatic. However, the drugs are above the range that NICE considers to be an acceptable use of NHS resources and therefore new patients will not receive the effective drugs going forward.

Professor Jane Davies at the NHLI said that the drugs are “genuinely transformative” and reported that there has been a reduction in hospital admissions of at least two-thirds. She added:

“If this … decision sticks, the population that is going to lose the most will be the youngest children who aren’t yet on these drugs, or haven’t yet been born”.


At Harefield Hospital, the percentage of lung transplants related to CF has fallen from 60% in 2018 to 5% in 2022. The DHSC says:

“Cystic fibrosis can be a devastating illness, which is why we have invested over £1.1 billion of funding into research of rare diseases”.


One is tempted to ask how that response will land with parents of patients with CF.

My wish is not to beat up on NICE. It has a really hard job and it is an extremely good regulator, trying to give analytical precision to the use of limited NHS resources. I really hope that there is serious behind-the-scenes pressure on the drug companies—in this case, Vertex Pharmaceuticals—to reduce the astronomical price. I am not naive. Research is expensive and often fails. We need long-term work and investment by pharma, but it comes back to trust—the bedrock which releases our golden nugget of patient data. Patients and families are watching this dance with disbelief. How can we collectively urge patients to share data for research if they see proven treatments being removed? They will feel like pawns.

The danger is still that life sciences are not being handled in a holistic way across government. Is the strategy for UK life sciences really joined up? Will the public’s relationship with personal data be handled intelligently and seriously—because that is right and because it is economically essential?