Patient and family participation: case studies

The National Association for Colitis & Crohn’s Disease (NACC) supports a number of inflammatory bowel disease (IBD) patient panels across England. Panels consist of  around 10 people and carers of people with IBD receiving care at the same hospital. An IBD team member from the hospital also usually attends.

Unlike most other patient or public groups or forums where the membership focus is on lay people who usually comment on broad health issues, an IBD patient panel is very patient-focused on a specific service (gastroenterology) about which they have  personal knowledge based on recent experience.

The purpose is to connect service providers with service users, to improve the quality of IBD services for patients. The panel has many functions:

• to feed back on current services; panels often identify small, low-cost changes that can have a large effect on patients’ experience
• to strengthen business cases made by service providers for resources
• to review proposals for changes or improvements to services.

There are many examples of the success of these patient panels in working with trusts. For example:

• successfully supporting the business case for a specialist IBD nurse at several hospitals
• securing the re-opening of a paediatric gastroenterology department
• allowing IBD inpatients to use fridges and microwaves so they can eat food they can tolerate
• developing protocols for A & E staff to alert the gastroenterology department when patients known to them were admitted.

East Kent Patient Panel

This panel came together following patient concern about a reduction in nursing posts in the unit from three to one. Patients feared this would have an impact on access to services and surveyed members of NACC.

The survey was welcomed by the trust, and the gastroenterology lead came to one of the panel meetings to discuss some of the issues raised. The PCT also welcomed the survey as it wanted to design a shared care model of service provision and was keen to include patients’ views.

Members from the panel are now attending a multi-disciplinary group that is leading on the service redesign. The PCT has recently advertised three new posts – IBD nurses who will be community based. After concerns were raised by panel members about hospital diet a meeting with the head of catering services resulted in low residue options (important for patients with IBD) being identified on the patients’ menu.

The charity Breakthrough Breast Cancer has been working with 15 breast cancer units in England and Wales to develop and produce, in collaboration with patients, a local service pledge for breast cancer. Further work with 112 more hospitals is ongoing.

The process is designed to enable patients to identify aspects of the service that matter most to them and where they would like to see improvements.

To do this, Breakthrough co-ordinates a patient survey at each unit and trained patient advocates conduct in-depth interviews with a small number of patients.

Breakthrough also works with health care professionals to review the service and identify specific areas for improvement. Patient representatives work closely with health care professionals to draft the local service pledge.

Patients’ and health care professionals’ views are brought together to produce the local service pledge for breast cancer. This lists both the standards of care patients can expect at the unit and highlights improvements the unit has pledged to achieve. Breakthrough supports all its pledge units in achieving these goals and facilitates learning between units.

Goals achieved by units since producing service pledges include:

• a photographic guide to surgery and reconstruction for patients at The Royal Surrey County Hospital
• a drop-in clinic run by the nurse specialists at The Friarage hospital.
  

An evaluation of this work in 2008 found the service pledge approach made a valuable contribution to improving services.

• Patients and health care professionals regard it as a distinctive and effective approach to bring about improvements in breast cancer services through patient involvement.
• Patients find the service pledge a useful source of information about the unit.
• The service pledge helps unite multi-disciplinary teams around common, patient-centred goals.