Inflammatory bowel disease standards group

Published: 31 October 2012

Background

The political agenda for secondary care of inflammatory bowel disease (IBD) has changed dramatically over the last six years.

The very first national IBD audit (2006) demonstrated huge national variations in care, painting a very bleak picture.

The second national IBD audit (2008) revealed only minor improvements in some areas but deterioration in others. In the absence of government white papers and NICE guidance, all the key IBD stakeholders came together and published the IBD Standards (2009). 

Current situation

The IBD Standards Group reconvened in January 2011. All the key IBD stakeholders are represented on the group, including Crohn's and Colitis UK, the British Society of Gastrenterology, Royal Pharmaceutical Society, Association of Coloproctology, Royal College of Nursing, IBD Audit, IBD Registry, IBD Quality Improvement Programme (QIP). Mark Sephton and Jean Bettany represent the RCN for the adult IBD nurses and Vikki Garrick for the paediatric IBD nurses.

Group aims

The aims of the group are to share the current status of, and future plans for, the various IBD national projects, to develop an overall strategy for these projects for 2012 and beyond, and to agree what work is necessary to take forward this strategy.

Buy-in across the UK

The IBD Standards have received broad support within England, but no explicit endorsement by the Department of Health.

Wales is the only country in the UK which has issued an official statement endorsing the standards, but this has had no measureable effect at local level.

Scotland has seen two health minister meetings, clear support and communication and £50,000 funding for the IBD Audit.

Northern Ireland has just allocated £1.5 million funding for biologics and five half-time IBD nurse positions, perhaps more of a success.

Future plans

It has been agreed that the current IBD Standards do not require any further review at present. However, it is agreed that the IBD Standards need more political weight so that managers are under more pressure to act on the recommendations. In the current changing environment of the NHS Outcomes Framework and clinical commissioning groups (CCGs), it is now timely to produce some key IBD quality measures so that they can be built into future data collections for the IBD Audit/Registry/QIP.

In future it is possible that hospital trusts could pay a single, fixed subscription to all three national projects.

The group is now focusing on these key performance measures and looking at various sources to develop these, including the NHS Outcomes Framework, IBD audit, the BSG commissioning guide, AGA IBD measures and a modified version of the ImproveCareNow (paediatric IBD outcome measurement tool).