Lord Aberdare
Main Page: Lord Aberdare (Crossbench - Excepted Hereditary)Department Debates - View all Lord Aberdare's debates with the Leader of the House
(2 years, 7 months ago)
Lords ChamberMy 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.
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.