Health and Care Bill

Debate between Baroness Finlay of Llandaff and Lord Hunt of Kings Heath

Committee stage
Thursday 20th January 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My noble friend Lord Patel has had to leave because of pre-booked travel, but he has given me the honour—and it is an honour—of having his brief speaking notes, from which I would like to start, and then move on.

Before I get on to that, I think it is important for us to remember that NICE was set up to establish the evidence base behind what we do. Before NICE was established—and I have worked with Deirdre Hine, who was very involved in setting it up when she was Chief Medical Officer for Wales—people were doing things because they had always done them and because they liked doing them that way, with no evidence base, and often they were doing things that made situations worse, not better.

As Lord Patel wanted to stress, clinicians have a strong belief now in evidence-based healthcare, and guidelines are critical to ensure high and consistent levels of evidence-based clinical practice across the NHS. The guidelines developed by NICE can be adapted to the local situation, and they are also under review. I should declare that I have served for three years as vice-chair of the group looking at ME/CFS guidelines, and it was very instructive to see the depth to which everything was explored and the rigour of the processes; to the point that, when we were asked to review again some papers, we went back to the beginning and reviewed them all over again. Interestingly, in doing that, we slightly downgraded their scoring, rather than upgrading it, which is what had been expected. I was really impressed at the rigour of the process, including the health economics impact.

That experience has been behind the push to make sure that there is compliance. My proposed amendment would be a way of assessing compliance with the guidelines as predetermined and set out in the NHS mandate. The mandate could select a few that would act as proxy markers across the piece and include a date line, so that their implementation across the country could be benchmarked. It would not increase the workload, because it could draw on existing sources of data in the NHS. As the Minister has said, data is our key to understanding and unlocking things.

The noble Baroness, Lady McIntosh, in her comprehensive introduction to this group of amendments, spoke about type 1 diabetes and highlighted that, in some areas, the adoption of continuous glucose monitoring is as low as 0%, whereas in other areas it is up to 20%. There are a couple of other emerging areas; one is in atrial fibrillation, where direct oral anticoagulants have made warfarin a drug of the past. Yet the variation between clinical commissioning groups’ adoption of the guidance is quite horrifying. There is a threefold variation in prescribing, so there are areas of the country where a lot of patients are being denied an intervention that has been shown to be beneficial compared to what was done before.

We have already alluded to another emerging area: the new biologics. On the face of it, they are very expensive, but they are often remarkably effective—they can revolutionise the management of some diseases. We have a budgetary problem here, because the NHS budgets are year-on-year, and the face-value cost of the new biologics is very high; but if you look at the whole lifetime cost of healthcare interventions then they come out much lower. Take the example alluded to, of Crohn’s disease, and consider the cost of someone having their bowel removed, who might then end up on total parenteral nutrition; it is not only the cost of that nutrition but the costs in all other domains in their life, and the lives of their family. In comparison, the new biologics can rapidly get this disease’s process under control and revolutionise things.

The proposal is to give the CQC the powers routinely to address the adherence to guidelines—that would be specified by the NHS mandate, so a national standard could be set—and introduce a reporting metric using current data sources as a starting point to establish a benchmark. I want to stress, as I know does my noble friend Lord Patel, that we are not advocating for guidelines to be mandatory—that would not be right, because each patient is different and individual—but we are asking for a system to be introduced that gives powers so that there can be scrutiny of whether the guidelines are being adopted, because their adoption would narrow the gap in inequalities. We both feel that we need to commit to address this in this important legislation, because it is a way of achieving tangible action to ensure equity in access to quality in healthcare.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I have added my name to the three amendments that the noble Baroness, Lady McIntosh of Pickering, has referred to. I was the first Minister for NICE, going back to 1999. At that time, we were confronted with a paradox which continues to this day, which is that, although the NHS is full of innovation and we have an incredibly strong life sciences sector and industry, the NHS is also very slow to adopt those innovations. NICE was developed to speed up the introduction of effective new medicines and devices. Right from the start, we had a problem with the NHS being reluctant to implement its recommendations and, within a few months of it starting, a regulation had to be put through which required it to implement them within 90 days. That has been slightly modified since, but none the less, it is still in being. The NHS has become very adept at finding ways to get round this through the various blocks that have been put in at CCG level—the noble Baroness, Lady Brinton, explained clearly the kind of blocks, devices and bureaucratic machinations that are put into place.

The result is that we continue to be very slow to introduce proven new technologies and medicines. NHS patients are very disadvantaged compared to patients in most countries. It then impacts on pharma and the devices industry—I think that pharma is more reluctant now to introduce medicines and develop R&D in this country as a result.

The Minister knows that there is an agreement—it is called VPAS at the moment—whereby NHS expenditure on drugs is capped and industry pays rebates if the cost goes over that cap. Given what I have always thought to be an imaginative agreement and given that industry is essentially underwriting some of those additional costs, surely there must be a better way to approach this which would allow the NHS to implement NICE recommendations enthusiastically, rather than essentially putting into place blocks.

I doubt that we are going to spend two and a half hours on this group of amendments, but these are just as important as the last group, because they go to the heart of whether NHS patients get access to the drugs, devices and technologies that they should. At the moment, they do not. I hope that the Minister might be prepared to take the amendment away. Legislation is the only way that we can see of leveraging the kind of change we need.

Medicines and Medical Devices Bill

Debate between Baroness Finlay of Llandaff and Lord Hunt of Kings Heath

Report stage & Report stage (Hansard): House of Lords & Report: 1st sitting & Report: 1st sitting: House of Lords
Tuesday 12th January 2021 Lords Chamber

[Lord Hunt of Kings Heath (Lab) [V]]

My Lords, I, too, welcome the Government’s amendment establishing the patient safety commissioner. This is highly significant and a great tribute to the noble Baroness, Lady Cumberlege, and her team. I should also declare an interest I must declare an interest as a member of the GMC board.

The noble Baroness’s report, First Do No Harm, is a stark and moving account of how thousands of patients were let down in a serious and life-changing way. I go back to her report because she found that the healthcare system, in which she included the NHS, private providers, regulators, professional bodies, and pharmaceutical and device manufacturers, was disjointed, siloed, unresponsive and defensive. It does not adequately recognise that patients are its raison d’être. Those are telling points, which led the noble Baroness to recommend the appointment of a patient safety commissioner, an independent and proactive public leader with a statutory responsibility to champion the value of listening to patients and promoting users’ perspectives in seeking improvements to patient safety. That is welcome and it will be essential that the person who is appointed is robust, fearless and commands wide respect. Their independence needs to be assured. I hope also that the appointment will be subject to Select Committee scrutiny and I should be glad if the Minister can comment on that.

Picking up on a point that the noble Baroness made, I should also be grateful if I could have a little more explanation about what is meant by relevant bodies, as defined in the schedule. It is clearly important that bodies with responsibilities in relation to patient safety are expected to respond to a report or recommendation made by the commissioner. Can the Minister give a broad indication of the relevant bodies? Also, in relation to the private health sector, my reading is that this is covered by the Bill and that the schedule provides for that. Can the Minister respond?

Overall, however, I commend the Minister on the Government’s response to this significant recommendation by the noble Baroness, Lady Cumberlege.

[Baroness Finlay of Llandaff (CB) [V]]

My Lords, these amendments are a testament to the incredibly hard work and perseverance of the noble Baroness, Lady Cumberlege, the Minister and the noble Baroness, Lady Penn. They have all worked hard to get to this point. The report, First Do No Harm, must be a turning point in driving up better outcomes.

I hope that in the response to these proposals it will be helpful to have reassurance that the new post will be adequately resourced, the timeframe for fulfilling the appointment is rapid, and, subsequently, regulatory requirements can be defined and relevant statutory instruments drawn up. The independence of the post-holder is crucial. The person must be able to work across all the different and varied organisations and structures that have responsibility for patients, directly or indirectly. That will require promotion to all organisations that they have a duty to co-operate and collaborate with the commissioner to ensure that early warning signals are picked up and heeded through processes that are light on bureaucracy yet rapidly responsive in order to pick up signals. We cannot have years of accumulation of distressed patients. When things start not to be right, those amber warning lights must start flashing.

I urge the Minister to ensure that the remit of the commissioner is as wide as possible. For example, the coroners’ reports that the noble Baroness, Lady Cumberlege, referred to have not had adequate enforcement by others sometimes. The reports made powerful recommendations but it was found that those responsible for enforcing them have been so slow to act that the proposals have effectively gathered dust.

In previous debates, I raised the need for the yellow card scheme to be updated—opened for easy use by patients themselves, who may wish to report adverse outcomes. The wording of the Bill that I found most helpful and welcome is the part stating that the role

“does not prevent the Commissioner considering individual cases and drawing conclusions about them for the purpose of, or in the context of, considering a general issue”.

Can the Minister make sure that the reporting mechanisms are open to patients and do not hit a hurdle when they try to report to a clinician who does not recognise the full import of they are saying?

To conclude, I reiterate my congratulations to all, particularly the noble Baroness, Lady Cumberlege, and her team, and look forward to the next phase of working with her and others as this important development moves forwards.

Medicines and Medical Devices Bill

Debate between Baroness Finlay of Llandaff and Lord Hunt of Kings Heath

Committee stage & Committee: 3rd sitting (Hansard) & Committee: 3rd sitting (Hansard): House of Lords
Wednesday 28th October 2020 Grand Committee

[Lord Hunt of Kings Heath (Lab) [V]]

My Lords, the world is increasingly aware of China’s forced organ harvesting from prisoners of conscience. This horrific crime of forcibly removing the organs from living victims—the process leading to inevitable murder—has recently been found by the China Tribunal to be happening extensively. The organ recipient may have had their life saved, but at the expense of another innocent life. It is now a multimillion-pound commercial business in China, with wealthy Chinese officials, Chinese nationals and organ tourists receiving treatment in high-end recovery centres.

Evidence of forced organ harvesting has grown and whistleblowers have emerged. Millions of Chinese citizens are currently detained in labour camps. UN experts estimate that at least 1 million Uighurs are being held in camps in the region of Xinjiang. Elsewhere throughout China, other ethnic and religious minorities such as Tibetan Buddhists, Falun Gong practitioners and Christians are also being held in labour camps. Companies from the West are complicit in this. Adidas, Nike, Zara and Amazon are among the western brands which, according to a coalition of civil society groups, currently benefit from the forced labour of Uighurs in Xinjiang. In July this year, a 13-ton shipment of hair products from Xinjiang, worth more than $800,000, was seized by US Customs and Border Protection. This shipment included wigs made from human hair, which is hugely concerning considering the many reports and personal testimonies of female Uighur Muslims having their heads forcibly shaved in the camps.

Last year, the China Tribunal, chaired by Sir Geoffrey Nice QC, concluded:

“forced organ harvesting has been committed for years throughout China on a significant scale and that Falun Gong practitioners have been one—and probably the main—source of organ supply.”

and that:

“In regard to the Uyghurs the Tribunal had evidence of medical testing on a scale that could allow them, amongst other uses, to become an ‘organ bank’.”


I point out to the Grand Committee the vast body of evidence of forced organ harvesting in China. Such evidence includes: detailed statistical analysis of transplantations and donations; numerous recorded undercover telephone conversations, including with well-known Chinese officials admitting to the practice of forced organ harvesting; legal and policy statements and practice of the CCP; advertisements and admissions of university and military personnel; incredibly short waiting times; and a large number of personal testimonies. The China Tribunal spent 12 months assessing all available evidence. Additionally, its international panel of highly respected individuals interviewed over 50 witnesses, experts and investigators, and formally invited representatives of the People’s Republic of China to respond. I do not believe it is sufficient for the UK Government to ignore this any longer.

Although Ministers have been personally sympathetic, so far the Government have relied on the World Health Organization’s view that China is implementing an ethical, voluntary organ transplant system. I am afraid this is simply not credible; the fact is that it is based on a self-assessment by China, as became clear during my noble friend Lord Collins’s PQ on 29 June 2020. The WHO has not carried out its own expert assessment of China’s organ transplant system, so I am afraid that the WHO cannot be considered reliable in this area. For me, the China Tribunal is persuasive on this point.

This Bill provides an opportunity to prevent British complicity in such crimes and to send an important signal to other countries. Currently, the Human Tissue Act does not require appropriate consent for imported human tissue. In addition, imported human tissue for use in medical research does not require traceability. The Minister has written to me to state that whether sourced from within or outside of the UK, there is comprehensive domestic legislation to ensure the ethical and appropriate use of human tissues. Yet while this is all true for human tissue sourced from within the UK, this does not address the gap in legislation for imported human tissue. On the concern about the use of human tissues in the development of medicines, which I do understand, the Minister commented that the use of imported tissue in any medicines on the UK market is very limited. However, while it may be limited, there is a gap in the legislation which could be exploited in the future.

I am grateful to the noble Lord, Lord Ahmad, for his awareness of the passion which many of us feel about the allegations of forced organ harvesting in China and for ensuring that the UK is not complicit in any way. I hope that he will acknowledge that my amendment—which has been signed by a number of very distinguished colleagues— is not prescriptive and essentially gives Ministers regulation-making powers to deal with the issue if and when they decide to do so.

Up to now, we know that many countries have pulled their punches when talking to China about these practices. Of course, as The Economist has pointed out, China’s economic power has helped it to avoid censure regarding its abuse of the Uighurs. Many companies in the West appear reluctant to use any leverage they may have to put pressure on China, and that is not helped by the reluctance of so many countries to upset that country. The UK, of course, faces dilemmas too, and we have seen them already in the issues over 5G and potential Chinese investment in new nuclear energy. I am not naive; I understand some of the pressures which are on the Government, but there must be a time when we make a stand.

I was encouraged by the reported words of Dominic Raab to the Foreign Affairs Select Committee on 6 October, when he referred to evidence of “gross human rights violations” against the Uighur Muslim minority in Xinjiang province. I pay tribute to the Government for being prepared to say that. I simply want them to go one step further, and agree to a very modest amendment. It seeks to give Ministers the powers to take action when they deem it right to do so. Accepting it would be a very important signal of this country’s attitude to gross human rights violations, and I have great pleasure in moving my amendment.

[Baroness Finlay of Llandaff (CB) [V]]

My Lords, it is a great privilege to follow the powerful speech of the noble Lord, Lord Hunt of Kings Heath.

While the Human Tissue Act 2004 is thorough and comprehensive with regard to human tissue sourced from within the UK, this does not hold true for imported human tissue. Human tissue can be imported into the UK without any consent or traceability. Notably, if it is for use in medicines, traceability is required through the Human Tissue (Quality and Safety for Human Application) Regulations 2007, but for use in medical research neither consent nor traceability is required. They are merely considered good practice. This means that human tissue sourced from China—where people are imprisoned and tortured, and where organs are extracted and sold for profit, a process which kills the donor—can legally enter the UK and be used in medical research.