Position statement

Our position statement on involving people with Crohn's and Colitis in improving health services.


We are striving to make sure that everyone living with Crohn’s and Colitis receives the best possible care and treatment at each point of their patient journey from their first GP appointment to self-managing their condition after treatment or surgery.

Rukshana Kapasi, Director of Health Service Development,
Crohn's & Colitis UK 

What we believe


No decision about me without me.

Kings Fund 2011, Making shared decision-making a reality

Crohn’s & Colitis UK believes patients should be at the heart of health service improvement. To provide high-quality, sustainable health services, people living with Crohn’s and Colitis and Healthcare Professionals (HCPs) must work in partnership to design services.

People with Crohn’s and Colitis are experts in their own condition. Their involvement in developing services is essential to the modernisation of the NHS:


People living with Crohn’s and Colitis have spoken so eloquently about how these conditions have touched every aspect of their lives. What is really striking for me is their rich knowledge of what does and doesn’t work in health services and the potential to use this knowledge in developing new models for the future.

Pauline McNeill, Member of the Scottish Parliament
Cross-party group in the Scottish Parliament on Inflammatory Bowel Disease

Giving people living with Crohn’s and Colitis a voice and active role in the planning, development, delivery and review of their healthcare services will support and empower them to live well with their condition.

Putting patients at the centre of decision-making also results in better services and better outcomes for patients - See Approaches and methodologies of patient co-production/design - A rapid review of existing evidence (pdf).


What needs to happen

Designing services in partnership needs to become an accepted way of working.

Through our work at Crohn’s & Colitis UK, we know patients offer a unique perspective on health services and can:

  • Suggest how their current and future care might be improved
  • Highlight needs or gaps in service provision that HCPs may not be aware of       
  • Help design, develop, test and launch new services

There are a range of ways to involve patients to shape and improve services. These include:

  • Engagement events
  • Consultations
  • Focus Groups
  • Patient Panels (a model developed to support patients to be involved in local service improvement
  • Questionnaires and surveys
  • Online networks
  • Interviews
  • Reference, Steering and Working groups
  • Stakeholder co-production

Both HCPs and people living with Crohn’s and Colitis need to have access to and be supported to use tools that support partnership working.


How we are making things happen

Crohn’s & Colitis UK are putting patients at the heart of everything we do. We are:

  • Co-producing the new IBD Standards, using a patient journey approach. These standards will be launched in 2019.
  • Stimulating whole system change by developing with patients Scotland Leading The Way A National  Blueprint for Inflammatory Bowel Disease in Scotland.
  • Meeting with politicians, HCPs and people living with Crohn’s and Colitis; talking to them about why working in partnership to design health services is essential
  • Launching a range of practical tools in 2019 to support partnership working
  • Supporting people living with Crohn’s and Colitis and HCPs to set up and develop Patient Panels in their local area
  • Creating a Patient Voices Network, so when there are opportunities to develop services we have patients willing to take part. Members of our network support NICE, SMC and AWMSG appraisals and have co-produced a flare-management pathway.

To comment or respond to our position statement please email healthdev@crohnsandcolitis.org.uk


Published: September 2018
Review Date: September 2019


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