Health and Care Bill

Lord Aberdare Excerpts

Lords Hansard - Part 3 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I want to react very briefly to one comment that has been made in debate tonight, which is the issue flagged by my noble friend Lady Wheatcroft. It is something that is continually raised in the wider debate on assisted dying and it is the issue of incontinence being seen as so inherently tragic that people should use it as a reason to want to end their lives. It is considered an important subject; we have an all-party group on it.

Personally, I find it really difficult because I am incontinent and I have never once felt undignified by it. I cannot believe that I am the only person in the House, or, indeed, in the Chamber tonight, who is incontinent and I will happily discuss the many solutions for sorting out this problem. What I see is that people are scared to talk about it, because they think it is something that we should never discuss. I have many solutions for this. I intermittently catheterise; I use indwelling catheters; I have lots of options available to me if those do not work—medication and lots of options on surgery. There is nothing undignified about being incontinent if we support it properly.

[Lord Aberdare (CB)]

My Lords, both these amendments reflect a desire to give people a greater say over the final weeks of their lives. As a strong believer in patient choice, which is, after all, a very central part of this Bill, I am greatly attracted by and supportive of my noble friend’s Amendment 203.

As several noble Lords have said, we are not very good at thinking about, planning for and managing death, despite Benjamin Franklin’s observation that it is one of only two certainties in this world, along with taxes. This amendment would give people diagnosed with a terminal illness the possibility of some degree of agency in their final days. That seems to me a wonderful idea, but it does of course raise questions about who such discussions would be with, and what qualifications might be needed by the people offering them. So, while I support the amendment, I would want to know more about the practicalities of delivering it, hopefully without having to create a whole new regulated profession of mortality consultants. I hope therefore that the Minister will respond positively to my noble friend’s suggestion of discussions on how the amendment might work; I will be interested to hear his response.

On Amendment 297, which I also support, I make only two brief points. First, I very much agree with what everybody has said that tonight is not the time to be discussing the merits of assisted dying; that is not what this amendment is about. Many Members on both sides of the argument have made it clear that Parliament needs to decide this issue, and the amendment from the noble Lord, Lord Forsyth, seeks to find a way of making that possible. I feel the same sort of alarm as my noble friend Lady Wheatcroft in finding myself on the opposite side to that of the noble and learned Lord, Lord Mackay, but, with the greatest respect, I think he himself said we were waiting for a decision from Parliament before the Government could act on this. In that case, there has to be some way or process for making such a decision happen. That is exactly what the noble Lord, Lord Forsyth, is trying to produce with this amendment. No doubt there are ways of improving how that is done, maybe by giving more time to my noble friend Lady Meacher’s Bill. This responsibility is Parliament’s to resolve, and I cannot believe that, in this great Parliament, we cannot find a way of doing it.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I rise partly because my noble friend Lord Forsyth referred to me earlier and partly because I wanted to clarify what is happening in the Scottish Parliament. There is not actually a Bill in front of the Scottish Parliament. The Orkney MSP, Liam McArthur, carried out a consultation which was very wide-ranging and closed only at the very end of December. Liam McArthur has reported that the submissions to his consultation were wide-ranging and unprecedented, and I look forward with great interest to reading some of them. You can look some of them up. I commend the Scottish Partnership for Palliative Care’s website; its submission is published there. The Neurological Alliance of Scotland also published a submission—I declare an interest because I am a trustee of the latter.

Both those submissions illustrate that this is a very complicated issue, as noble Lords have acknowledged, and there are many things that need evening out before we even get to potentially having draft legislation—a Bill or whatever it is; I am still learning parliamentary procedure. I find it interesting that my noble friend Lord Forsyth mentions that there might be a majority for assisted dying in the Scottish Parliament. I remind him that there is currently a majority for independence in the Scottish Parliament, but that does not mean that the people of Scotland want independence.

In my short time in this House, I have seen many amendments that may have been worthy in their own right but were in the wrong place in the wrong Bill. I think Amendment 297 in the name of my noble friend—I feel very nervous suggesting this to such an esteemed colleague—may possibly be the wrong amendment in the wrong Bill.

Health and Care Bill

Lord Aberdare Excerpts

Lords Hansard - Part 2 & Committee stage
Monday 31st January 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the Minister for introducing these amendments as he did and for giving us the assurance that John Baron, who had worked so hard on all of these issues around cancer care and cancer outcomes, has been fully consulted and is fully supportive of them. I was heartened to hear his stress on early diagnosis. All too often at the moment, patients are diagnosed in emergency departments when presenting late because their condition, for whatever reason, has been missed. We certainly need more early diagnostic tests to be available.

I am also grateful to the noble Lord, Lord Moylan, for speaking about a cancer which, in my experience in palliative medicine, is often within our domain. Indeed, I hope that the Minister might be able to find a way of supporting my colleague Professor Katherine Sleeman at King’s, who wants to establish a What Works centre, for a remarkably small amount of money, in order to roll out best practice in the way that the noble Lord, Lord Moylan, recommended. I do not expect the Minister to answer that now—perhaps we can discuss it later—but there certainly is a need to roll out best practice widely, not only from the cancer centres but out into the cancer units and beyond those to the general NHS.

Up until now we have had too much of an emphasis on process. This switch in emphasis to outcomes is most welcome; I expect everyone to strongly support these amendments.

[Lord Aberdare (CB)]

My Lords, I too am pleased to speak in support of the amendment addressing pancreatic cancer tabled by the noble Lord, Lord Moylan, to which I have added my name. I am grateful to the noble Lord for sharing a draft of his speech with me so that I have no need to test your Lordships’ patience by repeating facts and arguments that he and, indeed, the noble Baronesses, Lady Morgan and Lady Finlay, have already stated so tellingly.

I shall just emphasise a couple of points. I imagine that most, if not all, of your Lordships either know or know of someone who has died of this horrific cancer. Few survive more than a few months, unless they are lucky enough to be among the small number—I think it is about two in five people—whose cancer is diagnosed early enough to be operable. I find it quite shocking that the UK still lags so far behind other countries; as we heard, it is 29th out of 33 countries for its five-year pancreatic cancer survival rates. Research spending on pancreatic cancer is scarcely a quarter of that on leukaemia, for example, and supports correspondingly few researchers and projects. Hopefully, the noble Baroness’s friend may get some more of that.

There is a sort of vicious circle: because pancreatic cancer is so deadly, few patients are fit enough for long enough to take part in clinical trials, and few researchers are attracted to specialise in a condition that is widely regarded as a death sentence. The noble Lord’s amendment would build on the welcome audit of pancreatic cancer that he mentioned, seeking to ensure that its findings are regularly published, that they contribute to better information about pancreatic cancer and lead to specific action to address the issues identified—hopefully, the action may happen first and the audit later—while at the same time seeking to increase provision of PERT through national guidance and regular reporting.

Like the noble Lord, I wanted to mention that there are similar issues with other rare and aggressive cancers in this part of the body, such as bile duct cancer, and these too are often diagnosed too late for successful treatment. Even when surgery is available, the prognosis may be poor. Ideally, there should surely be an integrated approach to expedite diagnosis and treatment for all these cancers, and better information to help GPs and other healthcare workers to recognise their symptoms.

I very much hope that the Minister can give some reassurance on how the system being created by this Bill, including the revised NHS mandate on cancer outcome targets, will help to address the challenges of pancreatic and related cancers with some urgency, so that we can at last start to narrow the gap with other countries in treating them. I also very much support the government amendments that broaden the range of factors covered by cancer outcome objectives.

[Lord Vaizey of Didcot (Con)]

My Lords, I support the amendment of my noble friend Lord Moylan, which I was very proud to sign. I echo what the noble Lord, Lord Aberdare, said about knowing people who have died of this terrible disease. By coincidence, having signed the amendment, I had lunch with a friend whose brother suffers from pancreatic cancer. Luckily, however, he had it diagnosed extremely early because he had a blood test that identified the biomarkers that told him that he could have pancreatic cancer. He is now being treated and has a good chance of survival. Then, by coincidence, I visited my GP to have a blood test to test for prostate cancer. Luckily for me, the results were good.

I have a mild obsession about why we are not better in this country at implementing diagnostic procedures. When I went to see my GP to talk about prostate cancer, I asked her what kind of tests were available to me, as an NHS patient, for pancreatic or other types of cancer. As a layman reading the newspapers, almost every day there is news emerging of new blood tests that could identify cancer early. It is one of my trite dinner-party lines—I hesitate to say this, because there are so many experts in the Chamber this evening—that, in effect, one can almost argue that one has cured cancer if one is able to diagnose it early enough. That is why I welcome this emphasis on looking at outcomes rather than process in how we treat cancer. I hope that over time, it will shift the emphasis away from the treatment of cancer to how soon we can diagnose it.

I therefore support the amendment and ask the Minister a simple question: when will the test for pancreatic cancer be potentially universally available to NHS patients? I found it odd, talking to my friend over lunch, that his advice to me was to get myself on a trial as soon as possible to see whether I could get a test to get a diagnosis. It seems to me that we are lagging behind in the opportunity to diagnose cancer as early as possible and treat it as effectively as possible which, of course, will enable us to save a great deal of money.

Health and Care Bill

Lord Aberdare Excerpts

Lords Hansard _ Part 1 & Report stage
Wednesday 16th March 2022 Lords Chamber

[Lord Moylan (Con)]

My Lords, pancreatic cancer is a terrible disease, as noble Lords know: 10,500 people in the UK a year are diagnosed with it, 9,000 people a year die from it and five-year survival rates in the UK rank us 29th out of 33 countries with comparable data. The Government recognise that this is not good enough, so they are commissioning an audit of existing services as a first step to improvement. That is wholly welcome but it is turning out to be a very slow business, with the first data expected in 2023 and no timetable for action to follow.

Amendment 167 in my name is intended to add a sense of urgency to that. I am grateful for the support it has received from the noble Lords, Lord Aberdare and Lord Patel, and the noble Baroness, Lady Hayman of Ullock. However, I turn my attention this evening principally to Amendment 166 in my name, which is also supported by the noble Baroness, Lady Finlay of Llandaff. It relates to improving the treatment of those diagnosed with pancreatic cancer and can be delivered immediately.

The end-of-life experience of pancreatic cancer sufferers includes huge difficulties in eating and digesting food, because of the lack of an enzyme normally produced by a healthy pancreas. Pancreatic enzyme replacement therapy, or PERT, is a simple tablet costing only £7 a day. It is fully approved by NICE and allows sufferers to eat, but it reaches only about 50% of pancreatic cancer sufferers. Why is that? The truth is that we do not know exactly and, pending the audit, may not be able to say exactly. But a likely reason is that diagnosis of pancreatic cancer occurs so late because the symptoms present so late that a prompt decision has to be made about those who might be saved by surgery and those for whom nothing can be done. The former go to specialists, who tend to be aware of PERT and prescribe it. The latter, on the whole, move into more general palliative settings, where it seems that knowledge and understanding of PERT is less widespread.

Amendment 166 obliges the Government to make increasing prescription rates for PERT a national priority, without waiting for the outcome of the current audit. It was tabled in Committee and got a somewhat dusty answer from the Government Front Bench, hence its return today. To say that emphasising PERT should await the outcome of the audit would be to condemn literally tens of thousands of people to unnecessary suffering at end of life so I think these amendments, especially Amendment 166, will find general support across the House. Happily, I understand that my noble friend the Minister will be able to offer certain assurances when he speaks that would make any such Division unnecessary.

Before I conclude, there is one extra step that the Government could make early progress on that would be welcome. It is in disaggregating the data about the prescription of PERT, which can be prescribed for conditions other than pancreatic cancer. While the Government and the National Health Service are able to point to figures showing slowly increasing PERT prescription rates, what they cannot do at the moment is to say whether it is being prescribed for pancreatic cancer or some other condition. Disaggregating that data will be an important job for the Government to do, even to make progress with their own audit. Some comments on that today would also be welcome so, for the moment, I beg to move.

[Lord Aberdare (CB)]

My Lords, I am pleased to speak in support of Amendments 166 and 167 in the name of the noble Lord, Lord Moylan, addressing pancreatic cancer, to which I have added my name. I shall be brief as he has already made the case for these amendments so strongly. Both amendments include deadlines: for guidance on pancreatic enzyme replacement therapy to be published within six months; for data on PERT prescription to be published within a year, and yearly thereafter; and for a report on the audit of pancreatic cancer services to be laid before Parliament within six months and updated six-monthly. The reason for these deadlines comes down to a single word: urgency.

On average, pancreatic cancer sufferers live for only six months following diagnosis and more than half of the 10,000 a year will die within three months. That is hardly enough time for them to say proper goodbyes to their family and close friends, let alone to put their financial and other affairs in order, so the usual government timescales of “in due course” or even “shortly” are nowhere near fast enough for action to improve their treatment. I hope we may hear something more encouraging from the Minister.

Some such improvements may help extend their lives, even if only by a matter of months, but others equally important, such as PERT, may make a significant difference to the quality of the time remaining to them, however short. PERT enables pancreatic sufferers to digest their food; in some cases, it may even help them to gain the strength needed to undergo life-saving surgery. It is recommended by NICE and widely available. It costs just £7 a day per patient. I find it shocking that, as the noble Lord told us, half of patients who need PERT are not being prescribed it, mainly because of lack of awareness among non-specialist staff. Surely the Government can and should investigate and address this with urgency, as required by Amendment 166.