Crohn’s and Colitis UK Partnership Project

Section: Policy into PracticeType: News Item Date Published: 5th January 2018

Our Crohn’s and Colitis UK Partnership Project review activities over 2017 for our annual report.

Since January 2017 this project has built on the ALLIANCE’s portfolio of activity to support implementation of “Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease (IBD)” and supports a similar approach to service development in Northern Ireland.

Based at the ALLIANCE the Health Policy and Public Affairs Officer works with Crohn’s and Colitis UK’s Policy, Public Affairs and Research team to:

  • Prepare Public Affairs Plans for Scotland and Northern Ireland
  • Set up and support a Cross Party Group on IBD in the Scottish Parliament
  • Support and develop the Scottish IBD Nurse Network
  • Contribute to Crohn`s and Colitis UK position statements
  • Lead on a project to develop self management approaches for Crohn’s Disease and Ulcerative Colitis
  • Develop digital content to communicate key messages about IBD.

Key achievements over the year include:

  • Establishment of the Cross Party Group for IBD, convened by Pauline McNeill MSP which held its third meeting in December 2017. The CPG includes MSPs, clinicians, policy makers and people with lived experience of IBD. It provides focus and momentum for ongoing service improvement work with support of the Scottish Government and key stakeholders in the IBD community.

Topics covered service redesign; dialogue with Health Board Chief Executives; data and technology; children and young people’s services and in the New Year, the AGM will focus on self management and psychological support.

  • Providing support and development to the Royal College of Nursing (RCN) Scottish IBD Nurses Network. The Network aims to improve outcomes for people with IBD by sharing best practice and collaborating on service improvement initiatives. The Network works with Crohn’s and Colitis UK to maintain and strengthen links between professionals and patient groups.

During 2017 two national meetings were held and a refreshed constitution was approved by the RCN. Short life working groups are developing consensus statements on telephone and email support and multidisciplinary working – areas from the Blueprint recommendations where it was felt that the Network could make most impact.

  • The project has maintained close relationships with the Scottish Government’s Clinical Priorities Unit and the Modern Outpatient Programme. As well as submitting a response the Programme’s engagement phase, the Health Policy and Public Affairs Officer has been actively involved in leading on the ‘Guided Self Management of IBD’ workstream.
  • Leading a project for Crohn’s and Colitis UK to explore: ‘What Self Management means for people with IBD; Scoping and collating examples of good practice in self management and defining the concept for people with IBD to inform our service development activities around the UK’.

This year focused on scoping, exploring current research, views of people with IBD, health professionals and policy makers and current policy direction around self management in the four UK countries. A position statement to define Crohn’s and Colitis UK’s policy on self management in IBD will be available early in 2018

The next phase will be horizon-scanning to identify tools and resources, highlight gaps in provision, make recommendations and consider whether resources produced by the charity need to be re-packaged.



Crohn’s and Colitis Voices: feeling in control of the unpredictable

Written by: Nancy Greig

Published: 03/10/2018



Crohn’s and Colitis Voices: Why Self Management is a Balancing Act

Written by: Kate Gray

Member: Crohn’s and Colitis UK

Published: 15/05/2018



Crohn’s and Colitis Voices: My first year as Convener of the new CPG on Inflammatory Bowel Disease

Written by: Pauline McNeill

Organisation: Convener of the Cross Party Group on Inflammatory Bowel Disease

Published: 20/02/2018

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