To ask Her Majesty’s Government what assessment they have made of the variation in the standard of care received by patients with (1) Crohn’s disease, and (2) ulcerative colitis; and what plans they have to work with NHS England to implement a framework to improve care and outcomes for such patients.
My Lords, on the basis of the IBD audit, NHSEI is working closely with front-line clinical experts, patient representative groups and leading charities, including Crohn’s & Colitis UK, to develop evidence-based improvement tools to address possible variations in service. This work includes an important new inflammatory bowel disease right-care scenario, setting out what high-quality, joined-up care looks like at every stage of the patient journey.
My Lords, I am grateful to the Minister. He will know that over 500,000 people are living with inflammatory bowel disease, often with debilitating long-term symptoms and complications. Given the current huge variation in standards of care to which the noble Lord referred, will the Government appoint a national clinical director for IBD, solely to concentrate on spearheading a drive to implement the national IBD standards, which are backed by 17 healthcare professional and patient organisations?
We are doing a huge amount in this area, as the noble Lord rightly points out. In particular, we are working with Crohn’s & Colitis UK on the scenario work I mentioned. That is on top of working on diagnostic waiting times, formal personalised care, access to specialist treatment and formal, structured education. I will look into the possibility of having a formal leader to oversee all these strands, but my impression is that, at present, the work is best done by the individual workstreams I mentioned.
My Lords, Covid-19 has hit all services in the NHS. I pay tribute to those involved in the IBD area who have moved extremely fast to anticipate these problems. Rapid guidelines for gastrointestinal and liver conditions treated with drugs have been made available over telephone, email and text messaging services. NICE issued new guidance in August 2020 to advise healthcare professionals on gastrointestinal and liver conditions.
I am afraid that the management of public toilets is outside the reach of the department, but I will take that idea back to the department and write to the person responsible.
My Lords, when I was a gastroenterologist, I knew that patients with inflammatory bowel disease did best when managed by a team made up of a gastroenterologist, surgeon and specialist nurse. Too often now, patients are denied access to such teams. In view of what the Minister has said, will this team approach be part of how we might correct this deficiency?
I would like to reassure the noble Lord that the scenario I described typically includes two gastroenterology consultants, a clinical intermediate fellow, a GP partner and a patient representative. It is exactly this kind of team approach that delivers the best patient outcomes, as the noble Lord rightly outlined.
In 2012, NICE published a treatment pathway for Crohn’s and colitis. It was a groundbreaking change to ensure consistent and comprehensive services, including the team approach referred to by the noble Lord, Lord Turnberg, and outcomes for all patients of this autoimmune disease across England. NICE further updated this in 2019, so there has been a pathway for nine years. Why is it not being adhered to by NHS England? What will the Minister do to ensure that all Crohn’s and colitis patients get the treatment they are promised by NICE?
I am not sure it is correct that it is not being adhered to widely, but there is some variation in all parts of the NHS. That is why we are developing a right-care scenario for IBD with key stakeholders. This will create a very clear template for all patients and all those involved in their care. It will, I hope, help create more consistent standards across the healthcare system.
My Lords, I suffer from ulcerative colitis and understand how disabling this condition can be. Support from IBD specialist nurses is a lifeline in managing periodic flare-ups of the condition, yet the postcode lottery means that one-third of IBD patients do not have access to a specialist nurse. This is just one of the many examples of uneven standards of care. I do not know why the Minister cannot simply commit to endorsing IBD UK’s 2019 IBD standards and ensure that services are commissioned to these standards across the country. We have waited an age—at least three years—for the scenario he is talking about. Half a million patients are fed up of waiting.
I am extremely grateful for the testimony of the noble Baroness. She speaks very movingly about the challenge faced by those with IBD—a challenge that we all sympathise with. We are working extremely hard with both Crohn’s & Colitis UK and IBD patient groups on this scenario. There has been disruption in the last year, but I reassure the noble Baroness that we are working extremely hard to get the scenario out as soon as possible.
My Lords, does the Minister agree that, even for very experienced clinicians, diagnosis and treatment of these conditions can be very difficult indeed—as my experience over the years has taught me? Patients may present in bizarre ways—for instance, with a disease of the skin, eyes or joints. Furthermore, a patient with ulcerative colitis can almost imperceptibly become dangerously ill, requiring drastic emergency surgery. Clinicians are always trying to do better, and they need encouragement and thanks, particularly over this very difficult pandemic.
My noble friend is entirely right that diagnosis is key to the accurate and prompt treatment of IBD and associated conditions. That is why we have put diagnosis at the heart of our research programme. Between 2015 and 2020, we funded 20 research projects, many of them on diagnosis, with over £17 million committed. That includes a study into the overlap of IBD and magnetic resonance enterology to image Crohn’s disease patients. This approach is extremely promising.
My Lords, I agree with the noble Baroness. A lot of late diagnoses are caused by the kind of delicacy the noble Baroness refers to. My noble friend talked about the challenge of diagnosis, which is made more complex by patients finding a lot of these subjects extremely delicate. The approach taken in primary care to handling such delicate issues has improved dramatically over the years. We are working with GPs and clinicians to make their bedside manner more delicate, so that they are able to broach such delicate issues more sensitively. That, I believe, is at the heart of the problem.
My Lords, Covid-19 has widened the huge cracks in the quality of IBD care, with patients facing even longer waits for elective care, surgery, investigations and a personalised care and support plan to support their daily lives. Surveys have shown nearly one in five IBD patients have suffered a flare-up crisis during the pandemic because they were unable to obtain specialist advice. We know that many have had to continue shielding because Crohn’s disease compromises the immune system and they have to wait for their two vaccines. What recognition and support of their particular care needs is being given at primary care and community level?
I completely sympathise with all those with IBD and associated conditions. The situation the noble Baroness described is exactly right and it is extremely challenging. I have particular concern for those shielding for a very long period, although I hope many of them will not be waiting long for their second vaccine. Those with all conditions have endured some waits because of Covid, but the NHS is working incredibly hard on the catch-up. Huge progress has already been made and there is a massive focus on diagnosis in particular, to ensure that we catch up with all those presenting with problems who need diagnoses.
My Lords, the time allowed for this Question has elapsed.