Different models of patient panels on inflammatory bowel disease services are emerging and all are helping to improve services. Peter Canham looks at a new patient involvement initiative

At last month's British Society of Gastroenterology conference, the National Association for Colitis and Crohn's Disease unveiled a patient involvement initiative. The newly formed inflammatory bowel disease patient panels consist of people who are affected by colitis and Crohn's disease and whose primary aim is to exchange ideas with local NHS health professionals to improve their service.

To date, NACC's patient panel initiative has demonstrated how a small number of committed patients can make a huge difference to the quality of the inflammatory bowel disease service. For example, the development of a sound dialogue between patients and their healthcare professionals has led to the reopening of a paediatric gastroenterology department at Nottingham University Hospitals trust, as well as the appointment of a part-time IBD dietician at North Cumbria Acute Hospitals trust.

Together, ulcerative colitis and Crohn's disease affect one in 400 people. Gastroenterological conditions are the third most common reason for acute medical emergency conditions and figures taken from the UK IBD Audit 2006 indicate that at least 80 per cent of Crohn's disease patients need surgery at some time, as do 25 per cent of patients with ulcerative colitis.

The first IBD patient panel was originally set up by the association in 2005 and was intended as a pilot scheme. So far, the improvements and changes brought about by the initial pilot have led the association to increase the number of panels to 12, with many more expected.

The regional nature of each panel has meant they are able to evolve according to local circumstances. Reflecting the challenges faced by the patients, family and carers, the panels are open to anyone who receives an IBD service (inclusive of carers) from their local hospital.

The local work of patient panels is regarded by NACC as an important contribution to the development and promotion of its national identity, so they provide the patient panels with a full support framework.

Service improvement

The association is keen to measure the patient panels' achievements and undertook an assessment using data from the panels. The information was gathered through a self-evaluation questionnaire, an association IBD health service committee assessment and an audit conducted by the patient panel co-ordinator. All three approaches concluded that from a patient perspective, the panels could bring about valuable improvements to their IBD services.

Interestingly, even though each panel is unique, there appear to be three distinct models of patient panel emerging:

  • professionally initiated and led - includes patient participation when decision making;

  • patient initiated and patient led - includes close liaison with local IBD health service team;

  • a campaigning patient panel arising from a threat to local services has potential to develop into a more traditional model when the campaigning issue is over.

The government believes that through the involvement of patients and the public, the NHS can deliver a more enhanced, patient-centred service. In 2005 NACC decided to assess what improvements could be introduced to local gastroenterological services through structured IBD patient feedback. The birth of the patient panel is receiving growing interest from healthcare professionals throughout the UK. As the dialogue continues to grow, so does the quality of the IBD patient's experience.

Case studies: positive outcomes

Bradford Royal Infirmary

The first patient panel meeting was held in September 2005. The key support healthcare professionals involved were Dr Adrian Manning and IBD specialist nurses Jane Healey and Deborah Patterson.

The key aims of the panel were to:

  • improve the IBD patient experience;

  • enhance understanding of health needs of those with IBD;

  • encourage management by shared decision making;

  • develop services that are responsive to the needs of the client group and reflect cultural diversity within the local community.

Meetings were scheduled every three to four months and focused on specific topics chosen by panel members, which included steroids, diet, complementary medicines and spondyloarthropathies. The positive impact of the panel on local IBD services has also resulted in a much better understanding of patient needs, as concluded by hospital staff themselves.

Cumberland Infirmary, Carlisle

This panel meets monthly and has a membership of 12. Most meetings are attended by IBD nurse Vicky Edge and IBD dietician Kerry Maxwell, who was recently appointed with the help of the patient panel and organised an IBD and diet workshop addressed by national key note speakers. This proved to be hugely successful and drew attention to the benefits of specialist dietetic support for IBD patients.

The group also forged links with other patient groups in the area, and as well as providing feedback on IBD service provision at the hospital, has also contributed to consultations on proposed reorganisation of local NHS services across the whole of Cumbria. Carlisle hospital patient panel would now like to help set up a similar panel at the trust's sister hospital in West Cumbria.

Queen's Medical Centre, Nottingham

Launched in 2005, members included parents/carers and children affected by IBD. This panel came about as a response to the closure of the hospital's paediatric gastroenterology service to new patients. The sole aim of the panel was to reopen the gastroenterology service - which indeed it did. The panel now seeks to monitor current concerns about the reduction in IBD nursing hours and outlines its key aims as:

  • introduction of a managed clinical network;

  • the development of a younger adult service.