National Institute for Health and Care Excellence

Baroness Morgan of Drefelin Excerpts

Monday 23rd May 2022 Lords Chamber

Asked by

[Baroness Morgan of Drefelin]

To ask Her Majesty’s Government what steps they are taking to address capacity issues in the National Institute for Health and Care Excellence.

[Baroness Morgan of Drefelin (CB)]

I beg leave to ask the Question standing in my name on the Order Paper and, in so doing, I declare an interest as chief executive of the research and care charity Breast Cancer Now.

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

A key priority for NICE this year is to increase the flexibility and capacity of its technology appraisal programmes through a more proportionate approach to assessments that will enable it to continue to consistently deliver timely guidance on new medicines. From April 2023, NICE aims to expand its capacity for technology appraisals by 20% to respond to increasing numbers of new medicines.

[Baroness Morgan of Drefelin (CB)]

I thank the Minister for his Answer and for writing to me on this. NICE does a really important job in our health system and I pay tribute to it for that. However, one thing that I have observed recently is that, in some of the more tricky technology appraisals, sometimes you have a first rejection, then another committee meeting, then possibly another reappraisal. This puts a huge amount of stress on patients, often at the end of life, when they are really worrying about whether they will have access to the treatments under review. Is there anything more that the Government can do to help ease the passage of these interim access agreements that patients can have?

[Lord Kamall (Con)]

I am sure that the noble Baroness appreciates that this was a new process, because of the Orbis trial. In some ways, NICE was not exactly prepared for that. NICE has learned from that lesson and 100% of its guidelines are issued within 90 days of licensing. It has learned the lesson but, sadly, there was a confluence of factors: one was Orbis and the other was that the committee meeting regarding recommendations ran over because there were a number of other cancer drugs that it was trying to look at. It has put this on the agenda for the next meeting.

Mental Health Services for Rough Sleepers

Baroness Morgan of Drefelin Excerpts

Monday 21st March 2022 Lords Chamber

Asked by

[Baroness Morgan of Drefelin]

To ask Her Majesty’s Government what assessment they have made of the effectiveness of the £30 million programme to provide specialist mental health services for people sleeping rough, as detailed in the NHS Long Term Plan; and what plans they have to publish an evaluation of the outcomes of that programme.

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

This Government are committed to ending rough sleeping by the end of this Parliament. The long-term plan set a target of 20 high-need areas to receive new specialist mental health provision for people sleeping rough by 2023-24. In fact, the NHS has exceeded that target, with 23 sites. There are plans to share learning from these sites to identify the key successes and effective approaches, and NHS England plans to undertake a formal evaluation before the end of the programme.

--- Later in debate ---

[Baroness Morgan of Drefelin (CB)]

I thank the Minister for that Answer and look forward very much to the publication of that work. We know that common mental health conditions are twice as high among people who have experienced homelessness, and psychosis is 15 times as high. Obviously, I commend the Government’s commitment to end rough sleeping. Does the Minister know what figure has been settled on for the number of people sleeping rough with specialist mental health services needs? If one has been settled on, is that the criterion that will be used to review progress with the NHS long-term plan when that is refreshed?

[Lord Kamall (Con)]

I thank the noble Baroness for her Question and for her continued conversations with me on a number of different health-related issues; I am learning quite a lot from those. I understand that the data will be collected at some point, and I hope that that will be done regularly. If the noble Baroness will allow me, I write to her with more details, but I know that the top-level answer to that question is that we are about to get the data.

Health and Care Bill

Baroness Morgan of Drefelin Excerpts

Lords Hansard - Part 1 & Report stage
Tuesday 1st March 2022 Lords Chamber

I again thank the Government and remind them that, tragically, the average age of death of people experiencing homelessness remains at 46 years for a man and 43 years for a woman.

[Baroness Morgan of Drefelin (CB)]

My Lords, I do not want to detain the House for too long, as there is an awful lot of business to think about on Report. However, as I put my name to Amendments 63, 65 and 67, tabled by the noble Baroness, I want to press the Minister on the question of data.

I am advised, as I am sure others are, by really experienced charities, which say that one of the real challenges here, which will be a challenge for the ICSs when they are trying to do a great job in terms of compliance on disparities, is that the data on inclusion health populations is very incomplete. While there have been efforts to collect data on housing status, for example, that has been relatively incomplete and unsuccessful. So what I want to hear from the Minister is how we can be sure that through the development of this commitment to tackling health inequalities with an evidence-based approach, populations such as the inclusion health population are not invisible because the data is so difficult to collect. Is this something that the forthcoming White Paper could pick up? Will it focus on how the health system leaders will get the tools that they need to do a really great job for these populations, who have such complex needs and who really draw on the health service, A&E, et cetera, in a very intense way? There is such potential to make real progress, whether it is in the interests of people coming out of care, sex workers who are really challenged, or homeless people. We are all only a few steps away from that, are we not? So I would be interested to hear from the Minister whether that drive to collect comprehensive data to inform this work can be channelled in some way through a forthcoming policy initiative.

[Baroness Walmsley (LD)]

My Lords, from these Benches I thank the Minister and the whole Front-Bench team for the way they have engaged with the House on the issue of doing something really serious about addressing health inequalities.

Many of us put down amendments in Committee: dealing with inequalities was dotted all over the Bill. We even suggested that perhaps we needed a quadruple aim—an additional aim. The Government have taken a different but none the less effective approach, and I really welcome the fact that dealing with health inequalities has been made integral to the first two aims of the triple aim.

The Government have done two things that I particularly welcome. The noble Lord, Lord Kakkar, mentioned the engagement of the noble Lord, Lord Patel, with the Bill team on making sure that data can be collected. Without collecting the data, you cannot analyse or take action on addressing health inequalities.

The second thing, which the Minister mentioned in his introduction, is government Amendment 21, which is about the experience of people in the health service. He mentioned that the experience of people from an Asian background can sometimes be poor. I can give him an example of where that has been the case. My daughter has a friend, an Asian gentleman, who had a very painful physical injury. Very unusually, although his physical problems have now healed, he has been left with a mental scar because of his experience with the health service. This is very unusual, but he was not treated with compassion or respect. Indeed, it was more like discrimination—so I really welcomed what the Minister said about the importance of the experience of people from all demographics and ethnic backgrounds in the health service. It is vital.

I turn to the amendments from the noble Baroness, Lady Armstrong. Like all noble Lords, I have been watching the television recently, looking at the pain that the poor people of Ukraine are going through and seeing children, mothers and whole families huddled in cold, damp cellars. Some of them are taking several days to drive to the border to go to a country that will welcome them, perhaps with even more open arms than we do. It occurred to me that those people, when all this is over—and let us hope it will be over very soon—will probably be suffering from mental and physical illness. It also then occurred to me that there are people in this country who have poor-quality housing, insecure housing or no housing at all. When you put those things together, it is not surprising to realise that such people will be suffering from more serious and more frequent physical and mental ill-health than the rest of us who are in good-quality, secure housing. So the noble Baroness has hit on some very important issues about health inclusion communities and about the importance of housing to making health, and we support what she has to say.

I end by sincerely thanking all three Ministers and the Bill team for the way they have addressed this issue of health inequalities, and I really look forward to it making a real difference in future.

Health and Care Bill

Baroness Morgan of Drefelin Excerpts

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

[Lord Moylan (Con)]

My Lords, I greatly welcome the amendments proposed by my noble friend. In fact, I put my name to the equivalent amendments earlier, proposed by my noble friend Lady Morgan of Cotes. I rise to speak to my Amendment 294, the purpose of which is to draw attention to the dire state of the services and treatment offered to people suffering from cancer of the pancreas—although I could also say that there are other, equally forgotten and equally deadly cancers, such as bile duct cancer, that deserve a debate as well. I am grateful to my noble friend Lord Vaizey of Didcot and to the noble Lords, Lord Patel and Lord Aberdare, for their support of the amendment.

Many of us have seen family members and friends fall prey to this disease. Pancreatic cancer is the deadliest common cancer. It affects 10,000 people a year across the UK, and more than half will die within three months. Three in four will die within a year. Vague symptoms, lack of a simple early test, and low symptom awareness among both the public and primary care professionals result in three in five people with pancreatic cancer being diagnosed at a late stage, when curative treatment and life-saving surgery are no longer possible.

Research into pancreatic cancer has been underfunded for decades: it receives only 3% of the UK cancer research budget, despite being the deadliest common cancer. The result is that pancreatic cancer has the lowest survival rate of all common cancers, with five-year survival rates less than 7%. Five-year survival in the UK lags behind the rest of the world, with the UK ranking 29th out of 33 countries with comparable data. These survival statistics have barely improved in decades.

In addition, there is an unacceptable variability of services for pancreatic cancer sufferers, depending in part on geography, with those living near the few specialist centres able to access some services barely available elsewhere.

I wrote last year to my noble friend Lord Bethell with a particular suggestion being promoted by the small but excellent charity Pancreatic Cancer UK. In due course, on 1 December, I received a reply from my honourable friend Maria Caulfield, who said that NHS England and NHS Improvement had launched an audit of pancreatic cancer services with a view to reducing variations in treatment and improving outcomes. That is wholly welcome. The information we have nationally on pancreatic cancer treatment in the NHS is woefully poor. An audit is a good place to start. But she went on to say that the first data were expected in 2023—not the report, not the action plan that we need, and not the funding allocation, merely the first data.

My amendment seeks to impose certain reporting obligations on the Secretary of State, but its real purpose, and the real purpose of this debate, is to inject some urgency into the Government and the NHS. We cannot afford to wait years just to begin to understand the state of pancreatic cancer treatment and care, let alone to take action to improve outcomes. Pursuing the audit with urgency and dispatch should be a top government priority.

There is one thing the Government could do right away that would at least alleviate the suffering of pancreatic cancer patients—and this indeed is the subject I wrote to my noble friend Lord Bethell about at the urging of Pancreatic Cancer UK. The symptoms caused by pancreatic cancer have a very distressing impact. In particular, people are often unable to digest their food, ultimately starving the body of nutrients and calories, leading to rapid weight loss, malnutrition and loss of muscle mass.

The solution to these symptoms is pancreatic enzyme replacement therapy—PERT. PERT comes in tablet form; you take it with your food. It replaces the digestive enzymes that many people with pancreatic cancer can no longer produce. Taking the tablet helps food to be digested and absorbed by the body, and can vastly improve people’s quality of life. It can also, crucially, help them to gain the strength needed to undergo treatment. If people have lost weight and are too weak, they are sometimes not able to have surgery for that reason. NICE guidelines clearly recommend PERT for people with pancreatic cancer, whether the cancer is operable or inoperable, and there is widespread clinical consensus on its effectiveness. It is widely available and is cost-effective: it costs the NHS just £7 per day per patient.

However, a recent study has shown that only half the people with pancreatic cancer across the UK are prescribed PERT. The May 2021 RICOCHET study, undertaken by the West Midlands Research Collaborative, found that 50% of pancreatic cancer patients were not being prescribed the tablet they needed to digest food. The key reason people are not being prescribed PERT currently is a lack of dissemination of specialist knowledge about pancreatic cancer and the benefits of PERT to general healthcare settings. PERT is more likely to be prescribed in specialist surgical centres than in general hospitals, meaning that people whose cancer is operable are more likely to be prescribed PERT than those whose cancer is inoperable, because people whose cancer is operable are more likely to be moved to a specialist setting.

However, three in five people with pancreatic cancer are not diagnosed until their cancer is at an advanced stage and no longer operable, so they will tend to be treated with palliative care in a non-specialist setting. This means they will be far less likely to be prescribed PERT than if they had been diagnosed early.

What I would hope to hear my noble friend the Minister say this evening is that without waiting for the results of the audit, he will immediately set a national priority that PERT should be routinely prescribed as a feature of pancreatic cancer care. Without setting this focus and without corresponding leadership from national and local health bodies, knowledge and expertise will continue to spread far too slowly for the people with the quickest-killing cancer.

[Baroness Morgan of Drefelin (CB)]

My Lords, I am delighted to rise in support of the Minister’s amendments to Clause 4, and I would like to declare my interest as chief executive of Breast Cancer Now. I am also absolutely delighted to pay tribute to the honourable member John Baron, from the other place, for his incredible leadership as chair of the All-Party Group on Cancer, his tireless campaigning for the interests of cancer patients and his relentless demands around prioritising improvement in cancer outcomes—hence the origin of this new clause.

For me and for those listening to this debate, it is extremely important that the Minister has been able to clarify that the wide range of outcomes covered by this new clause will include, for example, early diagnosis, objectives around end-of-life care, the importance of measuring quality of life as an outcome, and timeliness of care, as well as survival, because we know that all those factors lead to improved quality of life but also improved survival. We do not have the time to wait five or 10 years to see whether improvements in survival are occurring—we need to see them today, next month. We need to see, for example, that PERT is getting through to all patients with pancreatic cancer, rather than waiting for the longer-term survival results.

I am very pleased that these amendments have been tabled and that the Minister has confirmed that a wide range of metrics will be used to ensure a tight grip on keeping track of the system’s performance, identifying emerging problems and backlogs as they arise, because we do not have the time to wait to find out if the system is off-track. I am very pleased that we have some clarity around what is included in these objectives. I will read the Minister’s remarks properly—when it is not quarter to 10 at night—and reflect. I am very grateful for them.

Also, what a tremendous amendment we have on pancreatic cancer, which is, as we have heard, such a pernicious disease. The audit will be very powerful when it really gets to work on what is going on locally to unearth thoughtful ideas about how the system can be improved. So much good work goes on in these audits, not just on pancreatic cancer but other diseases too. Making sure that those improvements are put into practice as quickly as possible has got to be a really good thing that this House will care about very much.

Breast Screening

Baroness Morgan of Drefelin Excerpts

Tuesday 14th December 2021 Lords Chamber

Tabled by

[Baroness Morgan of Drefelin]

To ask Her Majesty’s Government what plans they have to ensure screening of the estimated 1.2 million women in England who missed breast screening during the COVID-19 pandemic; and what assessment they have made of the extent to which health disparities may have been exacerbated due to the reduction in screening attendance.

[Baroness Meacher (CB)]

My Lords, I beg leave to ask the Question standing in the name of my noble friend Lady Morgan on the Order Paper.

Cancer Drugs: Licensing and Approval

Baroness Morgan of Drefelin Excerpts

Monday 8th November 2021 Lords Chamber

Asked by

[Baroness Morgan of Drefelin]

To ask Her Majesty’s Government what steps they are taking to align the timelines between cancer drugs being licensed and being approved by the National Institute for Health and Care Excellence.

[Baroness Morgan of Drefelin (CB)]

My Lords, I beg leave to ask the Question standing in my name on the Order Paper and declare an interest as chief executive of the charity Breast Cancer Now.

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

NICE is committed to publishing draft guidance on cancer drugs around the time of licensing, with final guidance published within three months of licensing wherever possible. The MHRA and NICE work closely together to ensure that licensing procedures and health technology assessments are as streamlined as possible. For cancer drugs, the NHS in England provides funding from the point of draft positive NICE guidance, delivering faster access to promising new cancer treatments.

[Baroness Morgan of Drefelin (CB)]

My Lords, the delay between licensing and NICE technology appraisal has been dealt with in the case of two out of the three drugs approved under Project Orbis, through agreements between NHS England and the drug company concerned. Unfortunately for women with secondary incurable breast cancer, for which there are very few treatment options, no agreement has been made with the drug company Gilead, and this creates a new treatment lottery. Are interim access agreements meant to be the permanent solution, and if not, what can be done to address this lottery and close the gap between Orbis licensing and NICE appraisal?

[Lord Kamall (Con)]

I thank the noble Baroness for her Question. Clearly, there is distress and concern at the delay between MHRA approval and NICE licensing. The drug Trodelvy was licensed by the MHRA for both unresectable locally advanced and metastatic triple-negative breast cancer through Project Orbis. On NICE’s appraisal of Trodelvy to determine its clinical and cost-effectiveness for use in the NHS, NICE hopes to have guidance next year but, in the meantime, NHS England, NHS Improvement and NICE continue to work with the manufacturer to explore options for interim access to Trodelvy.

Medicines and Medical Devices Bill

Baroness Morgan of Drefelin Excerpts

2nd reading & 2nd reading (Hansard) & 2nd reading (Hansard): House of Lords
Wednesday 2nd September 2020 Lords Chamber

[Baroness Morgan of Drefelin (CB) [V]]

My Lords, I declare an interest as chief executive of the research and care charity Breast Cancer Now and as chair of the National Cancer Research Institute.

I would like to start by congratulating the noble Baroness, Lady Cumberlege, and her colleagues on her committee, for her report and her compelling contribution today; it was incredibly moving. I, too, will be supporting steps to see this Bill serve as a vehicle for the implementation of her recommendations, most notably, as so many Peers have commented today, the establishment of a patient safety commissioner.

This Bill covers two areas of particular concern to cancer patients that I wish to emphasise today, which others have touched on, too. These are access to clinical trials and speed of access to newly licensed medicines. For the estimated 35,000 women living with incurable secondary breast cancer in the UK, clinical trials can provide early access to potential new treatments which might extend the time before their disease progresses, which might extend their lives and which can improve quality of life. These women often have few treatment options available to them, and clinical trials really do offer people with incurable secondary breast cancer and other cancers hope for the future. I do not want us to underestimate the value of that in these debates.

Research is, as we have heard, underpinned by pan-European and international collaboration. As an example, over 4,800 EU clinical trials involved the UK between 2004 and 2016. That is a significant number of important trials. The new EU clinical trials regulation, which we have already heard about today, will improve patient safety and streamline the process for setting up new trials, and this is vital. The Government made an extremely welcome commitment in 2018 to align as closely as possible with the new regulation, and it is essential that this commitment is restated and honoured. Today is an opportunity for that. However, without access to the infrastructure that clinical trials require, such as the portal and the database to support the regulation system, it will become much more difficult to run clinical trials across borders; that has already been talked about today.

Where trials show that medicines are safe and effective, it is vital that they are licensed and made available to patients as quickly as possible. We have heard today that the EMEA area represents 25% of global pharmaceutical sales and the UK just 3%. These are important numbers to bear in mind. If the pharmaceutical companies have to make a separate application to the MHRA, and incur additional costs, to license their medicines, delays are likely in those medicines becoming available in the UK. This is a threat to timely access for patients to new medicines, and its importance should not be underestimated.

We are also particularly concerned about access to medicines developed by small pharmaceutical companies. Can the Minister give some reassurance to patients with secondary breast cancer and other incurable cancers that access to clinical trials and newly licensed medicines will not be adversely impacted by the effects of this Bill? I look forward to hearing from the Minister.

[The Deputy Speaker (Baroness Garden of Frognal) (LD)]

The noble Lord, Lord Darzi, has withdrawn, so I now call the noble Lord, Lord Freyberg.