Health CommitteeWritten evidence from Crohn’s and Colitis UK (LTC 36)

1. Introduction

1.1 About 250,000 people in the UK have Crohn’s Disease or Ulcerative Colitis, collectively known as Inflammatory Bowel Disease (IBD). However, awareness and understanding of these conditions remain very low.

1.2 These are lifelong conditions that most commonly diagnosed between 10 and 40. In IBD, the intestines become swollen, inflamed and ulcerated. Symptoms include frequent diarrhoea (sometimes with blood and mucus), acute abdominal pain, tenesmus (the constant urge to have a bowel movement), weight loss, and profound fatigue. Symptoms vary in severity from person to person and flare up or improve unpredictably. IBD therefore fulfils the Department of Health’s definition of a long-term condition.

1.3 The majority of IBD Patients are managed as outpatients by specialist IBD Teams based in secondary care. The traditional approach has been to keep these patients on regular clinic follow-up to monitor their well-being, and this has in many hospitals been supplemented by a specialist nurse-led helpline to provide support and triage patients if their condition flares.

1.4 Annual reviews for people with IBD are vital once people are discharged to primary care as these are not systematically carried out and patients can be lost to follow-up. This could be addressed by a comprehensive registry of IBD patients, which can be accessed by GPs.

1.5 We welcome the fact that people with IBD want to be treated at home, but this needs to be provided safely.

1.6 The total cost of IBD to the NHS has been estimated at £720 million, based on an average cost of £3,000 per patient per year with up to half of total costs attributed to relapsing patients.1

1.7 We welcome Government efforts to increase the integration of care, which supports self-management for people with IBD whose conditions are stable.

1.8 However, there are a number of organisational and institutional barriers to achieving this, including:

Knowledge and understanding of IBD and its treatment in primary care.

The Payment By Results system, which incentivises hospital attendances.

Lack of a national register of IBD patients.

2. The Scope for Varying the Current Mix of Service Responsibilities so that more People are Treated Outside Hospital and the Consequences of such Service Re-Design for Costs and Effectiveness

2.1 Increasingly hospitals have begun to introduce nurse-led telephone or virtual clinics to reduce the numbers of routine clinic appointments for essentially “well” patients. Supported self-management has also been tried in a formal controlled trial and found to be safe and to reduce hospital and GP appointments. These approaches are encouraged in the UK IBD Standards, which aim to ensure that IBD patients receive consistent, high-quality care. The IBD Standards were developed by Crohn’s and Colitis UK and other professional organisations, and launched in 2009.

2.2 IBD nurse specialists are highly valued by people with IBD, as members of Crohn’s and Colitis UK explain—

“I prefer to self-manage my condition and only refer to the IBD nurse when forced to due to a flare-up, or when I need to turn up for an annual check up in the IBD Clinic Oxford. Supported self-management would surely free up time in the hospitals and give sufferers some degree of confidence to self-manage—with the knowledge of a sound back-up service with the IBD nurse.”

“I have had flare-ups whilst on holiday abroad and I have telephoned the IBD nurse and we have had an email correspondence which was been helpful and reassuring. This email/phone connection with an IBD nurse and the service they give both initially, and when needing advice, is imperative. It is valuable and necessary for patients and it would also alleviate any pressure on doctors/consultants.”

2.3 However, the scope for varying the current mix of services is limited by key structural and organisational barriers.

2.4 The current Payment by Results (PbR) system means that commissioners pay healthcare providers for each patient seen or treated. This means that there is a correlation between procedural activity and income to hospital trusts.

2.5 As it is only outpatient clinics and formal telephone clinics for which tariff payments are available, there is no incentive for any activity which avoids hospital attendances, such as an IBD nurse helpline, though avoiding attendance or admission is clearly in the patients’ best interests and saves NHS resources. As a result there is a constant battle to justify and protect the role of the IBD Specialist Nurse which is central to good care for Inflammatory Bowel Disease.

2.6 Crohn’s and Colitis UK is calling for a “year-of-IBD-care” tariff, which would mean that funding follows the patient between services and is not organised around specific interventions. It reflects a way of commissioning a year’s worth of care at a time, rather than paying for individual interventions. This is a model that could help improve long-term conditions management in a range of long-term conditions.

2.7 According to a recent report by the Royal College of Physicians into the locus of treatment for people with IBD, “Almost all GP’s [sic] indicated having some level of confidence in recognising the key symptoms of IBD in their patients with only 9.1% indicating that they were “not confident” in dealing with flare-ups. There does however, seem to be a wide range in the treatments given and this may depend upon whether GPs try to contact specialists for advice and indeed if they do, who it is that they choose to contact.”2

2.8 The report revealed that GPs were, in many cases, unclear about whom they should contact in secondary care to discuss a patient, and that they found it difficult to get patients seen within seven days, despite hospitals’ insistences that pathways for rapid access were available.

2.9 Crohn’s and Colitis UK has also received anecdotal evidence from queries submitted to our Information Service that GPs sometimes question treatments for IBD, and appear unaware of the debilitating psychological and social impacts that the condition can present.

2.10 Members of Crohn’s and Colitis UK have reported variable knowledge of IBD among GPs:

“[My] GPs don’t seem to know what to do to manage the condition. Consultant appointments tend to be very quick, and I don’t believe that they are at all adequate from a patient perspective. This is where a specialist IBD nurse would be very useful—they are often more empathic than consultants, for a start.”

“Though my GP is always very supportive and does whatever he can to try to manage my care when there’s a problem and I’m not able to be seen by a specialist, once he’s referred me to a consultant/specialist nurse/dietician, it shouldn’t really be his [the GP’s] job to change my treatment. Otherwise, why send me to an “expert”?”

2.11 Taken together, this suggests that there is potential for IBD patients to be managed effectively in primary care or through supported self management if their condition is stable, but this is limited by the above.

3. The Readiness of Local NHS and Social Care Services to Treat Patients with Long-Term Conditions (Including Multiple Conditions) within the Community

3.1 There seems to be little recognition that the current procedural tariffs are a major barrier to the development of more innovative and patient-centred care for IBD. Unless there are identifiable funds that can be allocated to enable an integrated care pathway of the ongoing management of mild to moderate stable IBD, it will be very difficult to secure the funding commitment to redesign and modernise services.

3.2 There have been numbers of innovative approaches to providing cost-effective patient centred outpatient care in IBD, but there has not so far been a systematic application of these to the system of care in one Board or CCG o demonstrate the benefit of delivering a fully-integrated IBD Service combining some of these developments. At present commissioning bodies have not seen the potential for this and may well consider IBD not significant enough as a condition to initiate such a project.

4. The Interaction between Mental Health Conditions and Long-Term Physical Health Conditions

4.1. IBD specialists often find it very difficult to obtain professional psychological support for patients. We feel that this is an example of a service that is probably needed by a proportion of patients for all long-term conditions. The NHS Commissioning Board should encourage commissioners to explore the provision of a Long-term Conditions Hub to provide expertise across conditions which would be harder to justify on a single condition basis.

4.2. There is also an issue around the provision of support for lifestyle issues and the management of pain and fatigue which are poorly managed in secondary care. Integration of care could allow management of these symptoms in local settings. This model could also be beneficial for people with other long-term conditions.

About Crohn’s and Colitis UK

Crohn’s and Colitis UK is the major charity offering information and support to anyone in the UK affected by these conditions. Established in 1979 as a partnership between patients, their families and the health professionals caring for them, the charity’s services include four information and support services, a website, a wide range of accredited information sheets and booklets and a nationwide network of locally based Groups. The charity also raises awareness of these little-known conditions, campaigns for improved health and social provision for patients, and funds vital research. Crohn’s and Colitis UK is the working name for the National Association for Colitis and Crohn’s Disease and currently has nearly 31,000 members across the UK.

9 May 2013