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Inflammatory Bowel Disease

Volume 838: debated on Monday 20 May 2024


Asked by

To ask His Majesty’s Government what action they are taking to improve awareness of, and services for people with, inflammatory bowel disease.

NHS England’s national bladder and bowel health project is delivering better care for people with inflammatory bowel disease, with a focus on developing clinical pathways. Additionally, NHS England aims to reduce variation in care for people with inflammatory bowel disease through its Getting It Right First Time gastroenterology programme. To raise awareness of IBD among GPs and other primary care staff, the Royal College of General Practitioners has produced an inflammatory bowel disease toolkit.

My Lords, the Minister mentioned variation in care. He will be aware that over half a million people in the UK suffer from IBD and that the actual quality of care is very varied throughout the country. For instance, the overall waiting time for new patient appointments at gastroenterology clinics varies between one week and 27 weeks, with a big impact on the outcome of the care the patient receives. My understanding is that there are IBD national standards but that they are not adhered to. Can the Minister tell me why that is, and when will the Government insist that the NHS gets the variation of care down to at least an acceptable limit where good-quality care is guaranteed to all patients?

The noble Lord is correct. I spent time with the clinical lead in this area this morning; there is a Getting It Right First Time pathway and it is clear that the initial cohort of 25 hospitals have shown real progress in this area. That is being rolled out across the pathway—we have now had cohorts 2 and 3 doing it—so we should see those improvements happen across the board. However, it is my job as a Minister to make sure that that happens.

My Lords, the Getting It Right First Time review that the Minister mentioned recommended increased access to endoscopy services over six and seven days and with extended hours. These are especially important for people trying to manage a bowel condition and work. Is the Minister satisfied with progress since that report in 2021 in terms of the availability of these services at weekends and in the evenings?

I think there are two things. One is the CDC programme; the 160 centres and 7 million tests that we have rolled out are now very much helping in that space. However, it is also about making sure that the right people get the tests. On the question of awareness as well, we now have these faecal tests—a bit like bowel cancer screening—which can tell with 90% sensitivity whether you have inflammatory bowel disease or irritable bowel syndrome. With one, you absolutely need to see a specialist for endoscopy, while with the other, you do not. Telling the difference is key.

My Lords, does my noble friend share my concern that a number of people, increasingly women, are being wrongly diagnosed with IBS when in fact they have an underlying cancer condition? How does he imagine that we can rectify this situation?

For the benefit of the House, I would say they are often confused. Irritable bowel syndrome is suffered by about 10% of the population while inflammatory bowel disease—we are talking about Crohn’s disease and colitis—is suffered by less than 1% of the population. The key thing is trying to understand the difference between the two; as I say, we have this poo test, for want of a better word, which can do that. With people who test positive, you absolutely need to get them into that screening programme and get it right the first time, so you can pick up those problems and things such as cancer.

My Lords, more years ago than I care to remember, I was a gastroenterologist and saw many patients with inflammatory bowel disease. We were desperately seeking a cause or causes and we did research on infectious agents, unsuccessfully. Can the Minister update us on where research into the causes of these diseases is going? It has been going on far too long.

The noble Lord is correct. This is an area where we still need more knowledge. We have spent about £34 million in research in this space over the last few years, but there is still a lot that we are learning. I can say freely that if there are good research projects there, the resources are available to make sure that they are funded, because we need to learn more in this space.

My Lords, many health authorities are sending out these tests to people. What percentage of these tests—“poo collections”, to use my noble friend’s words—are not being returned? It could be relatively high, particularly if we are not explaining the difference between the two types of illness.

As described by the clinical lead in this, these really are game changers, so getting them back is key. I do not have the figures to hand as to the amount that they get a response from but, in the case of the bowel cancer screening, many of us will be aware that there has been a whole programme which has been very successful in getting those poo tests measured and responded to. We need to learn the same lessons in this area.

My Lords, I draw your Lordships’ attention to my registered interests. To achieve the best outcomes for complex conditions such as inflammatory bowel disease, there is a requirement to ensure that patients are managed by properly skilled multidisciplinary teams. Is the Minister content that, with all the workforce pressures that exist, we are investing sufficiently to develop those teams to ensure the best clinical outcomes?

The long-term workforce plan sets this out. We are getting a good response in terms of filling up the places. We have about 98% or 99% of the training places filled. The challenge is that this service, more than anything else, suffers from the highest burnout. That is the area where we are struggling to fill the places. Therefore, we are trying to ensure that this scarce resource is used by people and that this early screening test is used so that people can see who they really need to see.

My Lords, I welcome the Government’s commitment to appoint a senior official to take responsibility for home care medicine services as a way forward to address awareness of coeliac disease and Crohn’ disease. Will there be a periodic update of data on how home care medicine services are functioning and a date for commencement of that data?

We had a very good debate on this a couple of weeks ago. All noble Lords accepted that it was a bit of a Cinderella service at the moment, but vitally important to a lot of people’s everyday well-being, so I am happy to do that.

My Lords, is the Minister monitoring what is happening in Europe and the US to see whether we can learn any new lessons from the research programmes that are being carried out there?

The Getting It Right pathway was very much informed from that best practice around the world and, in the last year, NICE has approved four new drug treatments. We are trying to look at the best medicines around the world. One of them, risankizumab, has resulted in a 44% reduction in the disease—so, yes, we are trying to learn from the best in the world.

My Lords, the noble Lord, Lord Hunt, asked about awareness. We know that certain communities are vaccine hesitant or less aware of some of the conditions and less likely to come forward. What lessons have been learned from some of the other programmes? Are there communities that are underrepresented for this? What efforts have been made to learn from other programmes to make sure that those communities come forward?

First off, it is trying to learn the lessons: the best parallel that I have so far is around the bowel cancer screening and that faecal screening programme. The real thing here is the difference between the 10% of the population who suffer from irritable bowel syndrome, a lot of which is diet-based in terms of the cure, and the 1% which really is serious in terms of inflammatory bowel disease. That is where we need the education and awareness.

My Lords, the Minister has twice mentioned the bowel cancer screening programme, which I think is universally accepted to be very successful, and is also very reassuring to those people who are part of it, whatever the outcome of the tests. He will also know that that screening programme and others drop people once they reach a certain age, which coincidentally is the age at which they become more likely to develop the cancers that the screening programme is intended to detect. Do the Government have any plans to increase the age up to which people can be routinely included in bowel cancer screening and other screening programmes?

The noble Baroness makes an important point. In this and other areas, we are guided by the science; we have been guided by the science on the advice to date. I will go back and ask for the latest thinking on that, and get back in detail in writing to the noble Baroness, but, generally, being guided by the science will be the approach.

My Lords, further to the question of the noble Baroness, Lady McIntosh, and indeed the question from the noble Lord, Lord Turnberg, I understood that there was a link with a weakened immune system. I wonder if that is still an active field of research. Is there any update the noble Lord can provide? Many people, for other reasons, are diagnosed with weakened immune systems.

These are all areas we are trying to find out about, such as Crohn’s and colitis. The trouble is that this whole area has a big field within it. The honest answer is that it is not absolutely understood, hence the need for research on what is causing this in the first place. As I say, we have spent quite a bit on research, but more needs to be spent on understanding the real issues. If the research projects are there, we will happily undertake them.