Position statement

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

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 and improve 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

Ensuring that the voice of people living with Crohn’s and Colitis is heard and they have an active role in the planning, development, delivery and review of their healthcare services is key. Not only will it 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

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

How we are making things happen

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

  • Reviewing our current networks, support and resources in 2020.
  • Re-launching our Patient Voices Network and Patient Engagement Toolkit in 2020.
  • Building new practical tools and resources to support healthcare professionals and people with Crohn’s and Colitis in 2020.
  • 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
  • Supporting people living with Crohn’s and Colitis and HCPs to improve Crohn's and Colitis care in a range of ways, such as Patient Panels

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

Published: September 2018, Reviewed: March 2020
Review Date: March 2021

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