Health and Care Bill

Baroness Meyer Excerpts

Lords Hansard - Part 2 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Lord Sharkey (LD)]

My Lord’s, I shall speak to Amendments 178 and 240, and I remind the Committee of my interest as chair of the Specialised Healthcare Alliance.

Amendment 178 deals with innovative medicines and medicinal products. The debate on this amendment is very timely, given the recent conclusion of NICE’s review of its methods and processes and the current consultation on the innovative medicines fund. Both the review and the IMF consultation are to be welcomed. It is clear that they will result in improvements in the system of assessing medicines and medicinal products, particularly in respect of analysing and addressing uncertainty and incorporating more real-world evidence into decision-making. However, it is also clear that both the IMF proposals and the outcome of NICE’s review are at risk of falling short of the hopes of many patients, clinicians and the life sciences sector more generally in a number of important ways.

First, there is still a lacuna in NICE’s approach to considering treatments for rare disease. For ultra-rare diseases—those affecting fewer than 1,000 people—NICE retains its highly specialised technologies process. For more common conditions—those affecting more than 25,000 people—NICE has its separate technology appraisal process. But for patients with rare diseases—those affecting between 1,000 and 25,000 people—there is no process, and so treatments for these patients have to be considered instead through the unsuitable technology appraisal process. This gap sets us apart from other countries, such as the more generous ASMR system in France and the AMNOG system in Germany for evaluating rare disease treatments.

It was therefore very disappointing to see that the case for the rare disease modifier was again rejected in NICE’s review. It was rejected on the grounds that society does not value treatments for rare disease more highly than those for more common diseases. Those representing rare-disease patients would contend that the fact is that these treatments are inherently costly. The Government accept this in relation to ultra-rare disease, so why do they not do so for rare disease treatments? I would be grateful if the Minister could address that specific question when he replies.

Secondly, NICE’s own consultation looked favourably on reducing the discount rate at which NICE assesses the future costs and benefits offered by a treatment, saying that such a change

“could make a particularly big difference to some treatments, like gene therapies.”

However, NICE has now said that this change would not be possible, due to the views of “system stakeholders”, and this has disappointed many people. When the Minister replies, I would be grateful if he could expand on what “system stakeholders” really means in this context. Who is NICE talking about and why did it assign conclusive weight to their views?

Thirdly, the system in England still fails to formalise the input of patients and clinical experts in the way that, for example, the SMC in Scotland does through its patient and clinical engagement process.

Finally, proposals for the innovative medicines fund now move far beyond the originally planned narrow focus on autoimmune and rare diseases. This causes some SHCA members to worry that rare diseases will get less attention than originally envisaged.

These proposals fall short of the hoped for bridge between the MHRA’s licensing process—which reforms are speeding up in some cases—and NICE’s reimbursement process. Without such a bridge, earlier licensing will not deliver benefits to NHS patients, and ultimately companies will lose interest in making bespoke licensing applications to the MHRA. The Government’s own figures—the life sciences competitiveness indicators, published by the Office for Life Sciences—demonstrate that it is already the case that the per capita uptake of new medicines remains lower and slower in this country than in comparable countries.

Our Amendment 178 suggests that the Government review the situation by the end of the year, when we will have a good half year of experience of the changes to NICE and the operation of the IMF, and when we will be able to see that the hoped for improvements have materialised. I hope that the Minister will consider this suggestion.

I now turn to Amendment 240, which seeks to probe the Government’s actions to improve awareness of rare diseases among healthcare professionals. There are more than 7,000 rare diseases, and it would clearly be impossible for every healthcare professional to receive training on every single one of them. However, as the Government’s rare disease framework notes, healthcare professionals can improve their awareness of rare diseases more generally, be more alert to considering them and be provided with the educational resources that help them recognise rare diseases in patients. Healthcare professionals can also be better supported to help signpost patients with rare disease to information about their condition and to help them understand it.

In a 2016 survey by Rare Disease UK, it was found that 70% of patients were not provided with sufficient information on their condition following diagnosis, and that 35% of patients given information did not understand the information that they were given.

More recent surveys demonstrated that these challenges continue. The Government’s national conversation on rare diseases in 2019 found that almost one in five people living with a rare condition reported that a lack of healthcare professional awareness of their disease was the number one challenge that they faced, and healthcare professionals themselves identified it as the second biggest challenge they faced behind only the well-known difficulties in obtaining an accurate diagnosis. I accept that healthcare professional regulators can do only so much to make improvements, but it would be helpful to understand from the Minister what steps they might be able to take to help better embed rare disease content in training frameworks.

Finally, there is a wider question of how the Government currently track progress in increasing awareness of rare diseases among healthcare professionals. How do the Government do that? I look forward to the Minister’s reply.

[Baroness Meyer (Con)]

My Lords, in speaking to Amendment 266, I shall not speak for long because everything has been said. The noble Baroness, Lady Finlay of Llandaff, explained the problem very clearly as did other speakers.

The only reason I want to speak is that in April last year I spoke in favour of the Private Member’s Bill introduced to this House by my noble friend Lady Wyld which sought to prevent cosmetic procedures being performed in England on people aged under 18 unless under the direction of a medical practitioner. The Bill was passed with cross-party and government support. As a result, children are now better protected. It is high time that we protected the population at large. When one hears of all the side-effects and that people can buy a product online and inject it into themselves or somebody else, it feels like the wild west, and the consequences can be quite dramatic, as we have heard. I very much hope that the Government will be able to support this amendment. This is not complicated and needs to be done quickly.

[Baroness Pitkeathley (Lab)]

I want to follow the noble Lord, Lord Sharkey, because I am former chair of the Specialised Healthcare Alliance. I shall speak very briefly in support of Amendments 164 and 178 in his name and that of my noble friend Lady Wheeler.

Every reorganisation of the NHS leaves patients who have a rare or less common condition anxious about how their particular needs will be assessed, how they will be met and even how they will be noted. It is sadly true that the rarer or more specialised a condition, the more it comes down to a postcode lottery whether the patient will be able to access care in spite of established national standards. Not only is it harder to access care, it is also harder for these patients to access the support groups or information networks which are vital when finding out the sometimes rare information about these conditions. The suggestion in Amendment 164 that the CQC assess the provision by ICBs of care for those with rare or less common conditions would provide the assurance that is so badly need.

House of Lords (Hereditary Peers) (Abolition of By-Elections) Bill [HL]

Baroness Meyer Excerpts

2nd reading & 2nd reading (Hansard) & 2nd reading (Hansard): House of Lords
Friday 13th March 2020 Lords Chamber

[Baroness Meyer (Con)]

My Lords, much as I like and admire the noble Lord, Lord Grocott, I hope that he will forgive me for disagreeing with him on this occasion. One thing that I have always admired about this country is its stability based on an ancient monarchy, ancient Parliament and ancient traditions. Since the Civil War, this country has known instinctively how to find the right balance between preserving tradition and allowing evolution. Contrast and compare that with the two countries from which my parents come: France and Russia. Since the revolution in 1789, the French have experimented with two empires, a monarchy and five republics to find the secret of stability. I would argue that they were still searching for it. In one short century, Russia demolished an empire and got rid of the aristocracy, replacing it with a communist tyranny. It is now an autocracy disguised as a democracy.

I am not being flippant, but I see that, in each of these countries, the constitutional baby has been thrown out with the bathwater several times, often in circumstances of extreme violence. In Britain, in times of great change, we have managed to keep the baby and successfully replace the bathwater without having to resort to violence. There is a lesson to be learned here. I am well aware that, for many people, Lords reform is long overdue. Many have spoken about it today. However, there is a difference between modernising an ancient regime and extinguishing centuries of tradition. Change, often masquerading as progressive politics, does not always produce improvement, particularly when there is no consensus on what shape that change should take and how it might affect our long-held values as a consequence.

Removing all hereditary Peers would fundamentally change the nature of your Lordships’ House. Their numbers have already been reduced to barely 11% and there is no reason to cull them into oblivion. Why should their presence be considered more objectionable than that of, say, those Peers who have been politically appointed? I may not have been a Member of this House for very long, but one thing I have observed is the quality of the hereditaries’ contributions, their grasp of a wide range of subjects and the variety of their expertise and experience. At a time when levelling up between north and south is a major plank of the Government’s strategy, we should recognise that the hereditaries are less urban as a group than any other group of Peers in this House. One issue often raised is the absence of female hereditary Peers. That needs to be addressed, there is no doubt, but surely this is not a matter for this Bill.

While we can all agree that change is needed, it should not be done in this way. It would be pure constitutional vandalism simply to wrench out of our ranks one small group which contributes so positively to our proceedings, out of proportion to their number. If this were to happen, I very much fear that we would find ourselves on a slippery slope at the bottom of which we would find a republic waiting for us. The last time we tried that, almost 400 years ago, was certainly not a happy experience.

EU Council

Baroness Meyer Excerpts

Monday 17th December 2018 Lords Chamber

[Baroness Meyer (Con)]

My Lords, how much taxpayers’ money would be spent if we had a second referendum? A second referendum would be a complete disaster. As the Prime Minister said, it would damage the core of a democracy that we took 1,000 years to achieve, and this Parliament is part of it. If you do a second referendum, why not a third or a fourth? Actually, why not govern by referenda and get rid of Parliament altogether? It is madness.

[Baroness Evans of Bowes Park]

I understand that the Electoral Commission has recently published figures showing that the referendum in 2016 cost around £150 million or £160 million. If that is incorrect then I will write to my noble friend, but I think those are the figures that were published. We are not considering a second referendum. We are working to ensure that this deal is passed by the House of Commons.

Leaving the European Union

Baroness Meyer Excerpts

Monday 26th November 2018 Lords Chamber

[Baroness Evans of Bowes Park]

We are absolutely committed to ensuring a deal that works for the entire UK family, including Gibraltar. Our position on Gibraltar sovereignty has not changed and will not change.

[Baroness Meyer (Con)]

My Lords, given that the head of HMRC, Jon Thompson, has again confirmed that, in the event of no deal, no hard border will be built in Northern Ireland; given that the Prime Minister of Ireland offered the same assurance last month; and given that the backstop remains the main source of dispute in this country over the Prime Minister’s deal, can the Leader of the House help us to understand why there is any need for a backstop at all?

[Baroness Evans of Bowes Park]

As we have repeatedly made clear, this is an insurance policy no one wants to use. It is needed in case the future relationship is not ready at the end of the implementation period to ensure that there is no hard border. However, as we have also made clear, it is not the only option. There is a possibility of a short extension to the implementation period. It has also been made clear in both the withdrawal agreement and political declaration that both sides will consider how facilitative arrangements and technologies can be used to avoid a hard border on the island of Ireland. There are other options that we will all be exploring rather than the backstop.