Health and Care Bill

Lord Moylan Excerpts

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

Moved by

[Lord Moylan]

166: After Clause 164, insert the following new Clause—
“Guidance on Pancreatic Enzyme Replacement Therapy
(1) The Secretary of State must, within six months of this Act being passed, publish national guidance making the appropriate prescription of Pancreatic Enzyme Replacement Therapy a priority within pancreatic cancer care in the NHS through the implementation of national targets.(2) The Secretary of State must, within a year of this Act being passed and every year thereafter, publish data on the prescription of Pancreatic Enzyme Replacement Therapy for pancreatic cancer patients.”

[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.

--- Later in debate ---

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)]

I thank noble Lords for bringing forward this further debate on the subject of pancreatic cancer services. I begin by confirming that the pancreatic cancer audit is included in the national cancer audit collaborating centre tender, which is currently live. Reporting timelines are included in the specification for this audit, developed in partnership with NHS England and NHS Improvement. However, I hope noble Lords will understand that, during a live tender, the document is commercially sensitive and cannot be shared beyond the commissioning team, as this would risk jeopardising the procurement process. While I recognise that it may be disappointing that I am unable to confirm the timeline for the pancreatic cancer audit until the procurement process is completed, I can say that the future contract to follow the procurement process in relation to the clinical audits is anticipated to start this autumn.

The normal process for a new national audit is a year of development and set-up, followed by data collection and analysis. The publication of the data would then follow. However, on a more positive note—and I hope my noble friend Lord Moylan considers this response less dusty—I can confirm that, alongside the audit of cancer services, important actions are being taken to ensure that clinicians are able to take informed decisions. NHS England and NHS Improvement have ensured that guidance on pancreatic enzyme replacement therapy is shared with cancer alliances to disseminate to clinical teams in their area. NHS England and NHS Improvement will also continue to work with Pancreatic Cancer UK to raise awareness among the clinical community about the value of PERT for many patients with pancreatic cancer.

Noble Lords will be aware that NICE has a clinical guideline, NG85, recommending that PERT should be offered to patients with inoperable pancreatic cancer, and that NICE has also included PERT in its quality standard on pancreatic cancer. NICE clinical guidelines are developed by experts based on a thorough assessment of the available evidence, but they do not replace the judgment of healthcare professionals. They are not mandatory, but they represent best practice. The NHS is expected to take them fully into account in ensuring that services meet the needs of patients. Ultimately, the use of PERT in individual cases is for clinical decision-making, following a discussion between doctor and patient. As such, national targets would not be appropriate.

My noble friend asked another question on data. PERT prescription data is already published online through the English prescribing dataset. This shows that levels of prescription have been rising. The data does not currently differentiate between prescription for pancreatic cancer patients and for people with other conditions. However, NHS England and NHS Improvement will consider PERT prescription data during the scoping of the pancreatic cancer audit.

I end by thanking my noble friend Lord Moylan for his constructive engagement and for pushing the Government on this. But I hope that the reassurances I have given are sufficient to persuade him to withdraw his amendment.

[Lord Moylan (Con)]

My Lords, I am very grateful to noble Lords who have spoken, particularly the noble Lord, Lord Aberdare, and the noble Baronesses, Lady Finlay of Llandaff, Lady Walmsley and Lady Thornton. I know that support for the principle behind these amendments is widespread throughout the House. The Minister has also taken that on board, and I am grateful to him not only for his engagement before this short debate but for the words he uttered from the Dispatch Box. He will be in no doubt that noble Lords will be paying attention to these prescribing rates in the future, carefully following what is happening, monitoring and asking questions to ensure that the information is getting to clinicians and that the medicines are getting to the patients who will benefit from them.

Before I sit down, I want to say a word of thanks to the excellent charity Pancreatic Cancer UK, with which I have worked on this and which I know also works with officials at the department to improve treatment for pancreatic cancer patients. I will test my licence a little further by saying that it is not only pancreatic cancer; there are also conditions such as bile duct cancer, which are just as devastating and which we, as a nation and a National Health Service, need to bring to the fore so that people get better treatment, better care and early diagnosis. We really can do this.

With that, I express gratitude to my noble friend the Minister and the other noble Lords who have spoken. I beg leave to withdraw the amendment.

Amendment 166 withdrawn.