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The Parliamentary Under-Secretary of State for Health (Jane Ellison)
It is a pleasure to respond to this debate under your chairmanship, Sir Roger. We have had a good debate with many first-class contributions. I hope it demonstrates to those watching and those who participated in such great numbers in the Facebook debate that Parliament is taking this issue seriously, as we have filled the time available to us with various contributions. I hope to be able to respond to most of the points made. If not, as ever, I will try to respond post debate.
I congratulate my hon. Friend the Member for St Albans (Mrs Main) on securing the debate. It is always interesting for a Member of Parliament with a great charity in the constituency; the MP ends up becoming quite expert, and my hon. Friend has done an excellent charity proud this afternoon in raising the issues. Crohn’s and Colitis UK is the national charity campaigning on these issues. I pay tribute to its work as it campaigns tirelessly to raise the profile of Crohn’s and colitis and to provide support and advice to all those affected. My hon. Friend is a keen supporter of its work.
I will not spend time describing the diseases themselves or the number of people affected, because others have eloquently done so. Instead, I will talk about some of the ways in which we are responding. A great many of our fellow citizens are affected, so it is right that we have this debate today.
Some hon. Members raised the issue of GPs, diagnosis and training. Digestive health features both as part of the undergraduate medical curriculum and GP specialty training. For GPs the required competencies include: understanding the epidemiology of digestive problems as they present in primary care; how to interpret common symptoms in general practice; and how to demonstrate a systematic approach to investigating digestive symptoms such as IBD. IBD also features in the content guide for the Royal College of General Practitioners applied knowledge test, a key part of the assessment of trainee GPs, which must be passed in order to qualify.
As others have said, diagnosing the symptoms of IBD can be challenging for a GP. Even though the numbers are quite large, as we have heard, if we divide the numbers by GP practice across the country, it might be the case that some GPs are not seeing people very often. The variety of symptoms and the range of their severity differ from patient to patient. Problems may also arise owing to the fact that the symptoms of IBD, such as abdominal pain and weight loss, are shared with other more common, less serious conditions, such as IBS, which is estimated to affect 12 million people in the UK, as opposed to IBD, which affects around 300,000. However, as others have said, a misdiagnosis or a delayed diagnosis can lead to a range of further complications for IBD suffers, so it is important that clinicians have the tools and resources to help them to identify symptoms when a patient presents.
In addition to their clinical training and experience, a number of tools and resources are now available to clinicians to help them to diagnose and manage IBD. The “Map of Medicine” is an excellent free online evidence-based guide and clinical decision support tool, which is available to GPs and other healthcare professionals working in the NHS. It has published diagnosis and treatment maps for patients with IBD. The map supports GPs on issues such as differential diagnosis and helps them to identify “red flag” IBD symptoms and provide advice on appropriate diagnostics and referrals. NICE has produced a clinical guideline specifically to support clinicians in using faecal calprotectin testing to help doctors to distinguish between IBD and less serious conditions as it highlights inflammation specifically.
NICE’s role in setting standards in the diagnosis and management of a range of diseases is well known, and IBD is no exception in that regard. NICE published best practice clinical guidelines on the management of Crohn’s and colitis in 2012 and 2013 respectively. Once diagnosed, a number of treatment options are available for patients. The Scottish National party spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), outlined some of the related challenges and some of the treatments in which she has participated. When treating IBD, the aim is either to heal the inflammation and so reduce the symptoms during a flare-up, which is known as inducing remission, or to prevent flare-ups from happening in future, which is known as maintaining remission.
The routine monitoring and follow-up of patients is a key feature of the guidance on the management of Crohn’s disease and ulcerative colitis. It ensures that patients can access specialist care when flare-ups or relapses occur. Protocols for monitoring should be agreed locally. Various drugs are recommended by NICE and funded by the NHS, and they can help with both of those aims. Although there is currently no cure for IBD, we know that some treatments can ease symptoms and improve quality of life—we heard Members talk about a particular member of staff and bring quality-of-life issues to the fore in their speeches. Management options include drug therapy, dietary and lifestyle advice and, in severe or chronic active disease, surgery.
I turn briefly to prescriptions. In addition to medical exemption, there are extensive exemption arrangements in England, based on age and income, via various means- tested benefits. For people who need multiple prescriptions and have to pay NHS prescription charges, such as those with long-term conditions, prescription prepayment certificates are also available, and it is worth highlighting that. I take the point about the challenge of prescriptions, but not everyone is aware of PPCs. This is the fifth year that the cost of an annual certificate has been frozen, and the third year that the cost of a three-month certificate has been frozen. Next year, both certificates will remain at £104 and £29.10 respectively. There is no limit to the number of items that can be obtained through a PPC. The annual certificate benefits anyone needing more than 12 items a year and the three-month certificate benefits anyone needing more than three items in that three-month period.
The IBD quality standard was mentioned. In general, quality standards are important in order to set out to patients, the public, commissioners and providers what a high-quality service should look like. NICE issues them, and they enable services to benchmark themselves against one another. The quality standard for IBD was published in February 2015 and contained priority statements covering important areas such as specialist assessment, drug monitoring and surgery, all of which is designed to drive improvements in IBD care. Although providers and commissioners must have regard to the quality standards in planning and delivering services, the standards themselves do not provide a comprehensive service specification and are not mandatory.
The six inflammatory bowel disease standards were published in 2013 by the IBD standards group, an independent organisation made up of a number of professional clinical organisations and the charity itself. The standards were designed to support clinicians and commissioning organisations in the development of local IBD services. If appropriate, they may be considered alongside sources of guidance such as the NICE guidelines.
A number of important issues have been raised in the debate that are very much matters for NHS England to look into. I am sure it will be really interested to hear about the challenges that have been raised in the debate, as well as about the Scottish strategy. As the shadow Minister said, the consideration of best practice throughout the United Kingdom is often common, as are many research outcomes, not only throughout the United Kingdom, but internationally.
Some Members mentioned the importance of nurse specialists. It was lovely to hear the hon. Member for Great Grimsby (Melanie Onn) pay tribute to the specialists with whom she has dealt and the standard of care and support she has experienced. Obviously the recruitment of staff is ultimately a local matter but, again, the NICE guidance states that local services should ensure that patients with Crohn’s or ulcerative colitis have support from an IBD multidisciplinary team, which should comprise a range of experts, including dieticians, who were mentioned, and clinical nurse specialists with particular expertise and specialist interest. That MDT care is a key feature of the quality standard, which sets out what great-quality care looks like.
The shadow Minister mentioned mental health support. It is worth noting for the record that we invested more than £400 million over the previous spending review period in improving access to psychological therapies—the IAPT programme—to ensure access to talking therapies for those who need them. That includes people with long- term conditions who are suffering from anxiety and depression. Recent positive announcements include the Prime Minister announcing £1 billion to start a revolution in mental health, which is a shared interest right across the House. No one has done enough on mental health in the past, and the matter is now much more front and centre in our thoughts. As part of that announcement, £247 million has been allocated to ensure that every emergency department has mental health support. That money reaffirms the Government’s commitment to parity of esteem between mental and physical health.
Several Members quite rightly asked about toilets. As others have said, it is essentially a matter for my colleagues in the Department for Communities and Local Government, but I will of course draw their attention to this debate. Local authorities in England are forecast to spend just over £60 million on such services in 2015-16. It is also worth noting that more than 400 local authorities and thousands of businesses have joined the national RADAR key scheme, meaning that some 9,000 toilets in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations are now listed as being accessible through the scheme. I am sure that we have all seen them in our local areas. Official RADAR keys cost about £5 and can be bought from participating local authorities or Disability Rights UK shops. While noting that initiative, we must recognise that there is always more to do in that regard.
Members quite rightly drew the House’s attention to research and the need to know more. Dealing with a disease that currently has no cure is a big challenge, and research is key. The Department of Health currently spends more than £1 billion a year on research. As for IBD, the Department’s National Institute for Health Research awarded a £1.5 million research professorship for five years from 2013 to 2018 at the University of Oxford to examine the use of molecular techniques to re-stratify Crohn’s disease, aiming to get into the detail of identifying patients amenable to new treatment approaches and to develop new therapies. The NIHR is also investing just under £1 million in a study comparing the accuracy of MRI imaging and small bowel ultrasound in assessing the extent and activity of newly diagnosed and relapsed Crohn’s disease. The final report from the study is expected to be published in September 2017, and I am sure that there will be interest in that among Members.
My hon. Friend the Member for St Albans also mentioned the IBD BioResource. It is a really exciting project that brings together the Medical Research Council and the NIHR, supporting groundbreaking studies looking at the genetics of and new treatments for IBD that have the potential to make a real difference to patients’ lives. It will undertake a major new genetic analysis based on genome sequencing, and it will keep a database of 25,000 patients with IBD.
I have tried to cover most of the points raised in the debate. I hope that I have given hon. Members a sense of the Government’s ambition to make progress on research. I again pay tribute to the charity for contributing to the research. Partnerships between Government bodies, medical research bodies and specialist charities are an important part of making progress, not least because recruiting people to studies is important, and we cannot do that without the work of the charities.
I will write to Professor Sir Bruce Keogh, the medical director of NHS England, to outline the concerns that hon. Members raised today and to ensure that he is aware of Parliament’s interest in this issue and of the challenge to the NHS that has been outlined today. I urge Crohn’s and Colitis UK, as I do all relevant stakeholders, to continue to engage with NHS England to build valuable long-term relationships. I will write to the Royal College of General Practitioners, as a number of the issues that were raised relate to it. I once again thank my hon. Friend the Member for St Albans for securing today’s debate and for making such a meaningful contribution to raising awareness of this very important issue.