UK IBD audit calls for IBD care to be given ‘formal recognition’ by national decision makers

In support of the UK IBD audit’s call for ‘formal recognition’ of the condition, Dr Jamie Dalrymple, Chair, Primary Care Society for Gastroenterology (PCSG), said:

The Primary Care Society for Gastroenterology (PCSG) supports this call for a mandated national care framework for IBD.  Since its inception the IBD audit has exposed the shortcomings in the provision of care for people with these conditions.  Although progress has been in improving the care provision, there is still much to be achieved and the PCSG fully supports this call for an IBD national strategy.

Full RCP press release below:

UK IBD audit calls for IBD care to be given ‘formal recognition’ by national decision makers

The UK IBD audit programme is calling for an NHS national strategy for Inflammatory Bowel Disease (IBD) in order for national healthcare decision makers, doctors, nurses and patient groups to better prioritise care for patients with IBD. Evidence from the audit highlights the need for a national strategy to make sure IBD services in England and Wales are the best they can be for patients.

The audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP)*. The UK IBD audit is carried out by the Royal College of Physicians.

IBD is a debilitating condition for both adults and children. It causes bouts of watery and bloody diarrhoea but also stomach pain, weight loss and lethargy and severely affects the way these people live their lives. Left untreated it can be a life-threatening disease. People with IBD will often require surgery during their lifetime and drug treatment will often include steroids and strong anti-inflammatory medication, called biological therapy.  Ulcerative colitis and Crohn’s disease are the two main forms of IBD and they are lifelong, chronic conditions. It is estimated that over 300,000^[1] people are likely to be affected in the UK.

The latest audit reports are published today and address the provision of IBD services and management of biological therapy for adult and paediatric patients. Combined, they show a varied picture of service provision for patients with IBD in the UK. In order to enable services to deliver high quality care, the UK IBD audit is calling for greater prioritisation of IBD care, amongst national decision makers to support the clinical teams treating patients with this chronic condition. These findings further support UK IBD audit reports published earlier this year about inpatient care and patient experience.

One possible way to do this is raise greater awareness of the disease and the shortfalls in the provision of care, Dr Ian Shaw, consultant gastroenterologist, and clinical lead for the UK IBD organisational audit, explains further:

“Since the UK IBD audit began in 2006 it has made great strides in improving IBD care, demonstrating improvements in the quality of care with each round of audit. However, it has come to the point where greater prioritisation, nationally, is needed. We have seen in other long term conditions, such as diabetes, that a mandated, national service framework can deliver real change in the quality of care and services for patients. Currently, without a NHS national strategy for IBD, services aren’t prioritised by commissioners, NHS managers or national healthcare planning. As a result the quality of patient care for those with Crohn’s and Colitis is variable.”

The findings from the latest round of the organisational audit for adult services show this variation well; results include:

• – IBD nurse provision continues to improve with 86% (148/173) of services now having at least some IBD nurse provision. This has increased from 56% (100/180) since the first round of audit (2006-2008). Only 37% (64/173) of services meet the IBD standard requirement (1.5 whole time equivalent).
• – Sites’ reporting an IBD multidisciplinary team (MDT) meeting has increased from 75% (152/202) in round 3 of the audit, to 91% (157/173) in the current round. However, only 40% (70/173) of services meet the IBD standards requirement to hold an MDT meeting attended by medical, nursing and surgical staff at least fortnightly.
• – The provision of inpatient toilet facilities is unchanged with only 27% (47/173) of services having one toilet per 3 beds. Appropriate provision of toilet facilities is vital for people with IBD because of the often urgent and frequent need to use the toilet associated with IBD.

 

Dr Richard Russell, consultant paediatric gastroenterologist said:

“Now is the time for the IBD clinical community to come together with our speciality societies, such as British Society of  Gastroenterology (BSG), British Society of Paediatric Gastroenterology, Hepatology  and Nutrition (BSPGHAN), Crohn’s and Colitis UK and the Royal College of Nursing (RCN), to work together to come up with a national plan of action for IBD.  This will help to ensure the improvements that are needed in IBD care are delivered consistently with the necessary political support.”

Dr Ian Arnott, associate clinical director, UK IBD audit said:

“The gains that have been made in IBD care, such as the increase in sites having at least some IBD specialist nurse support (56% up to 86%) , are due to the pure hard work of the clinical teams of doctors, nurses and other healthcare professionals on the ground. If further improvements are to be made then national support for these teams is needed. The ability of teams to see patients one week after a relapse has decreased and this is a reflection of the increasing pressure that teams are under. If teams are unable to see patients within one week after a relapse this could lead to unscheduled care, which places large pressure on the whole healthcare system.”

Findings from the latest round of the UK IBD audit of paediatric services include:

• – The majority of key indicators have changed very little from the previous round of audit
• – Where sites have met the recommendations of the IBD Standards, on-going monitoring through national or local audit should be undertaken to maintain or improve services.
• – There now needs to be a national plan of action to move IBD services forward significantly; this applies equally to paediatric and adult services.

Findings from the latest round of the UK IBD audit of the biological therapies audit include:

• – Participation in the biological therapies audit at a Trust/Health Board level is encouraging (92%) but in some cases it is likely that a minority of cases are being entered.
• – A quarter of patients are on steroids at initial treatment. There is evidence of a steroid sparing effect in 7% of patients on steroids at follow up.
• – Treatment with a biologic resulted in a response in 87% and remission in 70% of patients.  (Section 2, table 2).

 

Notes to Editors

For further information or to organise interviews with spokespeople from the UK IBD audit please contact Hannah Bristow on 020 3075 1447, 07584 303 784 or Hannah.Bristow@rcplondon.acuk

Copies of the reports for the organisational audit for adults and paediatrics and the biological therapies audit are available to download from the RCP website 

We hope that an NHS national strategy for IBD would integrate health and social care commissioning and empower patients to support their choices about their own healthcare.

*About HQIP, the National Clinical Audit Programme and how it is funded
The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote quality improvement, and in particular to increase the impact that clinical audit has on healthcare quality in England and Wales.  HQIP hosts the contract to manage and develop the National Clinical Audit and Patient Outcomes Programme (NCAPOP). NCAPOP is funded by NHS England, Welsh Government and with some individual audits also funded by the Health Department of the Scottish Government, DHSSPS Northern Ireland and the Channel Islands.

1         Molodecky NA, Soon IS, Rabi DM et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology2012;142:46-54