Health and Care Services

Inflammatory Bowel Disease – what action is needed?

12 July 2016

Article by Amy Clifton, National Assembly for Wales Research Service

Darllenwch yr erthygl yma yn Gymraeg | View this post in Welsh

The two main forms of Inflammatory Bowel Disease (IBD) are Crohn’s Disease and Ulcerative Colitis. Both are chronic diseases that cause inflammation of the digestive system, affecting around 15,500 people in Wales. According to Crohn’s and Colitis UK, prevalence is twice as high as for Parkinson’s and Multiple Sclerosis, with lifetime medical costs comparable to other major diseases such as diabetes and cancer.

Image from Wikimedia. Licensed under the Creative Commons.
Image from Wikimedia. Licensed under the Creative Commons.

IBD is a lifelong, incurable condition, which affects people of all ages, but commonly presents in the teens and twenties. Symptoms vary in severity and include frequent diarrhoea, acute abdominal pain, severe fatigue, tenesmus (constant urge for a bowel movement) and weight loss. Relapses often occur suddenly and unpredictably throughout a person’s lifetime.

IBD can cause blockages in the intestine or ruptures in the lining of the intestinal wall, which can require emergency surgical intervention if the condition goes untreated, or in severe cases. Between 50% -70% of patients with Crohn’s Disease will undergo surgery within a lifetime. Lifetime surgery rates for Ulcerative Colitis are about 20-30%. There is also an established link between IBD, particularly extensive Ulcerative Colitis, and an increased risk of developing colorectal cancer.

Implementation of national guidelines

National IBD guidance was issued in 2009 in the form of the UK IBD Standards. In subsequent years, the standards have been supplemented with NICE Clinical Guidelines, and updated in 2013.

Crohn’s and Colitis UK says that although standards of treatment and care for people with IBD in Wales have improved in recent years, they still fall behind the average for the rest of the UK. It states that despite the existence of national guidelines, there is a clear disparity in standards of IBD care across the UK nations.

A Fourth Assembly petition called for the Welsh Government to develop a gastroenterology delivery plan to address variation and ensure standards are met. However the then Minister for Health and Social Services, Mark Drakeford, said he saw no need at that time to consider the development of a delivery plan, as there were already other improvement processes underway.

The UK IBD audit benchmarked health care and services against national IBD Standards from 2006 – 2014. The last round of the UK IBD Audit data (2014) highlighted inconsistent provision of care and the report noted:

[…] whilst there are some signs of improvement, standards remain highly variable across Wales and, in many cases, lag behind the rest of the UK.

A survey by Crohn’s and Colitis UK of 450 patients in Wales in August 2015 found that

  • 42% did not have access to a specialist IBD nurse; and
  • Over 20% were ‘not satisfied’ with their treatment.

The UK IBD audit programme called for a national NHS strategy for IBD to better prioritise care for patients. Following the audit, the IBD Registry will be publishing an annual IBD Registry report every June, from June 2017.

Endoscopy services

The British Society of Gastroenterology has raised concerns that endoscopy services are declining in Wales following the abolition of the National Leadership and Innovation Agency for Healthcare (NLIAH).

In a Fourth Assembly debate, the then Deputy Minister for Health, Vaughan Gething, said the Welsh Government recognised in 2013 that there were issues with the oversight, accreditation and provision for endoscopy and colonoscopy and undertook action to address it. He noted:

A lot of effort has already gone into improving endoscopy services, including the establishment of sub-groups for performance, investment and capacity, and that’s been supported by £1.5 million of Welsh Government capital investment […]

Crohn’s and Colitis UK highlight that waiting times for endoscopies has significantly increased across Wales particularly for those waiting beyond 14 weeks:

  • The number of patients waiting between 8-14 weeks increased from 276 in October 2009 to 481 in April 2016.
  • The number of patients waiting between 14-24 weeks increased from 91 in October 2009 to 467 in April 2016.
  • The number of patients waiting over 24 weeks has increased from just 5 in October 2009 to 256 in April 2016.

Access to toilets

Crohn’s and Colitis UK note that for those with IBD, symptoms like diarrhoea and tenesmus can occur instantly and unpredictably, therefore quick access to suitable toilet facilities is crucial. It reports that concerns about access to toilets in unfamiliar environments can severely limit the activities of a person living with IBD.

Crohn’s and Colitis UK was therefore disappointed that the Public Health (Wales) Bill fell in the last Assembly. The Bill recognised access to toilets as a public health issue, including provisions to require each local authority in Wales to prepare and publish a local toilets strategy for its area, assessing the community’s need and setting out how it proposes to meet this need. The charity would have liked the provisions to go further, but nevertheless welcomed the Bill. It is pleased that the new Welsh Government intends to bring forward a new Bill in the Fifth Assembly, and hopes it will take the opportunity to significantly improve access to public toilets in Wales.