The full report contains detailed information about the organisation and structure of paediatric IBD services in the UK. The participation of paediatric sites in the UK Paediatric IBD Audit in 2008 was a major step forward in helping to ensure that the desired consistent, high quality care is available for all IBD patients, independent of age.
It should be noted that the IBD Audit was established and 2nd round datasets agreed before the IBD National Service Standards were published. Therefore, we did not specifically audit against them for the 2nd round.
- There should be a continued focus on multidisciplinary working with sites moving towards the development of the IBD team as outlined in the National IBD Service Standards.
- Improvement in the provision of IBD Clinical Nurse Specialists is required to reach the minimum level of 1.5 WTE per IBD Team as recommended in the National IBD Service Standards.
- Trusts/Health Boards should provide appropriate levels of toilet facilities and make sure that they are suitable for paediatric patients of all ages.
- Immediate efforts should be made to improve stool culture and CDT collection rates for all new and relapsing IBD patients.
- The adoption of national guidelines, such as the Guidelines for the Management of Inflammatory Bowel Disease (IBD) in Children in the United Kingdom produced by BSPGHAN in October 2008, rather than local guidelines, may help local paediatric units with their care of UC inpatients e.g. for pouch surgery, acute severe UC and heparin use.
- The volume of pouch surgery is very low. Consideration for either regionalisation of pouch surgery and/or liaison with a high volume adult centre may be appropriate.
- A system for sharing of information about test results or treatment changes should be developed through the use of IT, written communication or a patient held record.
- IBD Services must continue to develop shared care between specialist paediatric gastroenterology sites, district general hospitals and primary care.
- IBD Services should aim to see all relapsing patients within 7 days.
- Patient involvement in local IBD services should increase.
- Paediatric Sites already meet the standard of providing written information however patient education and support should continue to be developed.
- Every IBD Service should develop a searchable IBD database.
- A national biologicals database should be developed.
- Participation in national audit is a requirement for all IBD Services.
- Participation of paediatric IBD patients in clinical research must increase substantially.
- The development of the UK Medicines for Children Research Network may facilitate wider participation of IBD patients in clinical trials.