Many hospitals not reaching national standards for treating inflammatory bowel disease despite improvements in services

IBD, comprising Ulcerative Colitis (UC) and Crohn’s Disease (CD), affects around 240,000 people in the UK, and is now estimated to cost the NHS in excess of £1 billion.  Both conditions are lifelong and follow an unpredictable relapsing and remitting course.  The conditions are managed through medication, but half of patients who have UC will need surgery, and four in five patients who have CD will need at least one surgical operation in their lifetime.  These diseases are most commonly diagnosed in young adults and have wide-ranging effects on growth and development, mental health, education and work prospects, family life and pregnancy and conception.  Good diagnosis and management by a multidisciplinary specialist team can make a major difference to a patient’s life.

Up to 25% of cases will present in childhood years with a marked rise in incidence of paediatric IBD noted, especially in Crohn’s Disease, in the UK and other countries over the past few decades.

The IBD Audit was commissioned by the Healthcare Quality Improvement Partnership (HQIP), with additional financial support from Healthcare Improvement Scotland, and is a collaborative partnership between gastroenterologists (the British Society of Gastroenterology and British Society of Paediatric Gastroenterology, Hepatology and Nutrition), colorectal surgeons (the Association of Coloproctology of Great Britain and Ireland), patients (Crohn’s and Colitis UK) and physicians (the Royal College of Physicians).

National results from the adult 2010 audit which measured adult IBD services as at 1 September 2010 showed that:

• More sites than before have some access to specialist IBD nurses (72% compared to 62% in 2008), although most still have less than one and a half nurses per 250,000 population as recommended in the IBD Standards
• There has been a rapid expansion in the provision of dedicated gastrointestinal wards, now seen in 90% of sites, compared to 77% in 2008.
• Multidisciplinary working is widespread with three quarters of sites having IBD multidisciplinary team meetings
• One area of particular improvement is access to specialist advice with over 89% of sites reporting that they see relapsing patients within 7 days (69% in 2008), 94% having a telephone helpline (86% in 2008), and 81% providing written information on who to contact in the event of a relapse (69% in 2008). 99% of sites provide written information on IBD to patients.
• There has been a very small improvement in the number of beds per toilet, from 4.2 beds per toilet in 2008 to four beds in 2010, but again this remains below the recommended levels of one toilet per three beds. 24% of toilets are mixed sex.
• Relatively few patients aged 16 or below are cared for in adult hospitals but it is clear that services for these individuals are substandard. Sites often lack specific age appropriate areas (such as wards and operating theatres) for the care of such patients and some sites lack staff who are adequately trained to look after this age group
• There has also been improvement in the provision of joint or parallel clinics, guidelines for the management of acute severe ulcerative colitis, use of IBD databases, and patient involvement in service development, although some of these remain at relatively low levels.
• Access to dietetic services appears to be very good but it is clear from the previous rounds of clinical audit that relatively few IBD patients actually saw a dietician during an admission. Data from the current clinical audit will be available in 2012, and will demonstrate if this continues to be the case. There is a need to ensure that available services do actually reach patients.
• The provision of psychological support or counselling remains at very low levels, with provision at less than a quarter of sites.

The adult audit shows that adult IBD services have definitely improved and that the IBD National Service Standards have had a major effect since their launch in February 2009, but it is important that this continues.  Key action points are as follows:

• Health departments in England, Northern Ireland, Scotland and Wales must support future rounds of the UK IBD Audit in order that quality improvement in IBD care is sustained.
• All NHS Trusts/Health Boards should review their local audit results in relation to the IBD National Service Standards and take any necessary action to improve their IBD Services.
• Professional organisations should support and direct change, at a national level, for the issues identified in this report as requiring improvement.

Dr Ian Arnott, chair of the UK IBD Audit Steering Group, said:

These results demonstrate that healthcare for people with inflammatory bowel disease in the UK has improved, with the main drivers being the UK IBD audit, the National Standards of Care, and the charity Crohn’s and Colitis UK.  Access to specialist services has seen a particular improvement as has the provision of specific ward areas.  There remains much work to do to bring all hospitals in the UK up to the levels set in the service standards, and this needs the continuing support of patients, clinicians, hospitals and government to realise this aim.

Jonathan Potter, clinical director of the RCP’s Clinical Effectiveness and Evaluation Unit:

It is particularly gratifying to see the improvements in care identified in this third round of the national IBD audit.  They demonstrate the advantage of having clear national standards against which to monitor and improve care.  The improvements need to be sustained and in particular we need to ensure that the clinical findings accord with the experience of patients.

Richard Driscoll, Chief Executive, Crohn’s and Colitis UK:

Patients who have Crohn’s or colitis need specialist IBD services to ensure they get the quality of care that will help them to lead as full a life as possible. The IBD Audit is a very important means of monitoring the standards of IBD care across the UK and we are delighted that for the first time patients will be able to see selected audit results for their IBD service and will be able to support the continued drive for service improvement.

Jon Rhodes. President, British Society of Gastroenterology:

The impact of previous audits plus the introduction of standards of care have clearly led to substantial improvements in care for patients with these very troublesome conditions. However, there is still much to be done, particularly to bring up to standard those hospitals that do not currently have appropriate support services in place.

National results from the paediatric 2010 audit which measured paediatric IBD services as at 1 September 2010 showed that:

• There has been a significant increase in the median number of whole time equivalent (WTE) paediatric gastroenterology and IBD nurse specialists at each site, from 1 in 2008 to 1.5 in 2010.
• 83% of sites now have at least some paediatric gastroenterology or IBD nurse specialist provision, compared to just 61% in 2008.
• The median number of WTE paediatric consultant gastroenterologists at each site rose from 2 in 2008 to 2.2 in 2010
• 19 out of the 24 paediatric sites have a hospital multidisciplinary nutrition team and all sites have dietetic support for the provision of dietary and nutritional advice.
• 83% of sites have defined access to an adult consultant gastroenterologist with an interest in adolescent gastroenterology.

• 39% of adult sites indicated that they look after IBD patients aged 16 and under, of which, less than half  had a surgeon with suitable paediatric experience.
• For patients aged 16 and under having endoscopy at these adult sites, 53% had an endoscopy area with age-appropriate facilities, 56% had someone with training and/or extensive experience in paediatric endoscopy and 68% had an anaesthetist with paediatric training.

Dr Richard Russell from the British Society of Paediatric Gastroenterology, Hepatology and Nutrition:

In an era where IBD in children and young people continues to rise, it is critically important we get care for IBD patients right from the start, especially when the illness starts in childhood. It is very pleasing to see the national increase in the number of sites looking after children that have a specialist nurse available and that all sites now have a specialist dietician to help treat children with liquid feeds. However, the audit demonstrates that we need to work harder to make sure that all children and young people across the country have equal access to all of the services that they need for good IBD care. The inequalities identified in the audit need to be addressed at both a local and a national level.

For further information, please contact Linda Cuthbertson, head of PR, on +44 (0)203 075 1254 / 0774 877 7919, or email Linda.Cuthbertson@rcplondon.ac.uk