Case study: Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease (IBD)

Case study: Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease (IBD)

The document "Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease (IBD)" is the first of its kind in the UK and is designed to ensure that people living with IBD in Scotland receive fair, timely and appropriate care in line with the IBD Standards.

The Blueprint directly applies to the ‘IBD Service’ Standards. It also indirectly relates to all other areas of the Standards, due to its culmination of a three-year service improvement project for IBD services, which was supported by the Scottish Government and led by Crohn’s & Colitis UK. This project demonstrated how the 2013 IBD Standards could be implemented ‘on the ground’.

Overview

The National Blueprint set out the key components of an IBD service for Scotland - drawing on real life experience and examples from two diverse NHS Health Boards, NHS Highland and NHS Greater Glasgow and Clyde.

It outlined a process through which individual Boards could map their services and develop improvements. Aiming to lead to better care and a better quality of life for people living with IBD.

The idea

The Scottish IBD Service Improvement Project was set up in 2013. It endeavoured to demonstrate that through a planned approach with Board, patient and clinical engagement, better patient outcomes and improved use of resources for NHS Boards could be achieved.

As part of the project there was a steering group, which developed a quality improvement approach, based on the NHS Scotland Quality Improvement Hub model. Pilot groups were set up in two diverse NHS Boards, where the patient journey was mapped against the 2013 UK IBD Standards, identifying gaps and aspirations in service delivery.

These gaps became the work streams and focus of the service redesign and the reconfigured services were tested for success. Some additional work streams including Paediatrics and Information Technology were developed by the Steering Group. The group then shared good practice from across Scotland to develop a set of recommendations.

Results

The Blueprint sets out key recommendations for Scottish Health Boards, the Scottish Government and other stakeholders to co-design and deliver the elements of a responsive IBD service, including:

  • Better use of technology to provide rapid access to services
  • Clearly defined multidisciplinary teams led by an IBD nurse
  • Age appropriate services for children and young people
  • Dedicated psychological support for IBD patients
  • Scotland-wide guided self-management tools for IBD
  • A fully integrated interface between primary and secondary care

Three years on from the Blueprint’s launch in 2016, significant progress has been made in several areas leading to:

  • Greater use of innovative technology, including telephone and email advice services, ‘NHS Near Me’ video clinic software and the the Small Business Research Initiative competition, to identify methods to support self-management of Crohn’s and Colitis through a mobile app
  • Partnership work with the Scottish Government to co-design and develop national self-management tools, including a Flare Card and Care Plan
  • Introduction of a Primary Care Faecal Calprotectin/ FIT programme to ensure timely referral for diagnosis
  • Improvements in paediatric services including better transition services and almost universal access to telephone advice.

In addition, the Blueprint set out the development of consensus recommendations for the role and job structure of IBD nurses in IBD services. In 2017, Vikki Garrick was commissioned to research and write “Inflammatory Bowel Disease Services in Scotland: A Short Report Commissioned by the DO-IT Collaboration on behalf of the Scottish Government”. Two of the recommendations of this report were:

  • Service redesign led by senior Clinical Nurse Specialists.
  • Nationally agreed IBD nurse job descriptions and IBD Nursing service plans.

Whilst the Blueprint is an excellent framework for better services, there is no mandate for it to be implemented at Health Board level. Crohn’s & Colitis UK continues to lobby parliamentarians and highlight the Blueprint to local Health Boards.

It is fantastic that Scotland is becoming the pioneer of IBD care and is leading the way with a National Blueprint. I have experienced first-hand the care provided to someone diagnosed with Crohn's or Colitis in Scotland, and I am thrilled that patients, the Government and Crohn’s & Colitis UK have come together to formulate a national plan to ensure that everybody receives the best possible care.

Kirsty, Patient

The Scottish Government considers the 2013 UK IBD Standards to provide the basis for good quality IBD care. We anticipate that this Blueprint will act as a valuable supplement to the 2013 Standards, assisting NHS Boards in facilitating their incorporation into healthcare delivery in Scotland, and thereby providing a route to delivering improved care for people living with IBD in Scotland.

Dr Catherine Calderwood, Chief Medical Officer for Scotland