Patient involvement

Patient involvement

Crohn's and Colitis UK believes that no Inflammatory Bowel Disease (IBD) related initiative, development or service will be as good as it could be without the input of people affected by these conditions at each stage in the cycle of planning and development, implementation and delivery, monitoring and review.

Those living with IBD have a personal experience and understanding of the impact this has on their and their families' lives and through receiving health and other public services, they can become 'Experts by Experience'. This wealth of experience plays a vital role in informing and shaping the work of the Charity and improving the way services are delivered for others.

Crohn's and Colitis UK work to ensure that the voice of those living with IBD is valued and heard. We support individuals to become involved with the Charity and with initiatives that can make a real difference to the lives of others with IBD. In addition to this, we support and encourage individuals to get involved in service improvement more broadly by participating in opportunities that are not IBD specific but enable representation from the IBD patient community.

Susan Maniquiz

Being a part of the Highland project has been great.  I've learnt so much and knowing that I am helping change the shape of healthcare for IBD patients in the Highlands and in Scotland as a whole is hugely satisfying.

Susan Maniquiz
Scottish Service Development Group Patient Member 

Get involved!

The opportunities listed below are independent of Crohn's and Colitis UK and are not necessarily IBD specific but meet our best practice requirements and enable you to use your experience as a patient to improve care and services for others. If you have any queries about any of the opportunities listed below then please contact the organiser.

  1. Change awareness of self-management, and therefore to help people working in services to re-think how they work and to make ‘supported self-management’ an approach they always use for people with long-term conditions.

  2. Introduce more people with long-term conditions to the idea of self-management, its potential to change their lives, and the resources that can help.

    The experts by experience leading the project have put together a draft set of statements about self-management, which will be the basis of the project’s final outputs. We now want to involve as many people with long-term conditions as possible in commenting on and contributing to the statements.

    How to be involved

    You can also join the conversation on Twitter using the hashtag #ImInControl. The supported self-management page on our website describes the project in more detail, and has full instructions for how to get involved.

  • Northern Ireland: The Northern Ireland IBD Interest Group, which consists of clinicians and members of Crohn’s and Colitis UK is holding a patient evening for patients receiving their care in Northern Ireland on Monday 5th June 7pm to 9pm at Dunsilly Hotel in Antrim (the Laburnum Room), BT41 2JH. The IBD Interest Group have an important strategic meeting at the end of June to review what the IBD service in Northern Ireland should look like and wants to know from you what matters the most and what the top priorities should be for developing the service. Take part here.

    If you are able to attend, please email Tea/coffee and biscuits will be provided and expenses can be reimbursed (details on the evening). Please also let us know if any special assistance is required to allow you to attend.
    If you are unable to come but want to share your views, please respond to a short survey available at by 21st June 2017.


  • Northern Ireland: Join the Patient and Client Council - Health and Social Care in Northern Ireland want to work in partnership with the people of Northern Ireland to help shape the future of local health and social care services and to ensure that your voice is heard by the decision makers.  They want to form strong links with patients, clients, carers and communities to help affect real change in the development, planning and provision of services. The more people that get involved, the greater the driving force for change.To join and have your say Click Here 

  • Lay/Patient representative assessor - The Royal College of Physicians (RCP) sets best practice standards for NHS services in endoscopy, primary immunodeficiency and allergy services. It then assesses services to ensure they meet the standards and accredits them when they do. The RCP is recruiting lay assessors to represent the needs of patients and service users in accreditation assessments and is looking for patients or members of the public who bring their own experience, fresh insight and an independent perspective. They will be required to ask powerful questions and contribute to the accreditation process, offering fresh views and a reality check rather than to formally represent a group of patients or the public.No formal qualifications are required, simply a commitment to support the continued development of healthcare through the accreditation process, an objective approach, a genuine interest in participation and an ability to constructively challenge the views and assumptions of professionals. If you would like to be considered for recruitment and training to become a lay assessor, please email: to request an application pack.  

  • Scotland: Citizenship Focus Group - Researchers from the University of Strathclyde are looking at what the concept of citizenship means to people who have experienced 'life disruptions' - in this case long term health conditions. They want to understand more about the things that are important to people in their day to day lives, what makes them feel included and what the barriers are. Participants are invited to come along to a focus group discussion with others who have experienced similar life disruptions, which will last approximately one hour. Refreshments and lunch will be provided, and travel expenses can be paid for. To find out more, please contact Gillian MacIntyre on 0141 444 8647 or email her on
  • Scotland: Benefits payout study -The Scottish Government will soon become responsible for some of the benefits currently taken care of by the Department for Work and Pensions (DWP). They want to work with people who have recent experience of benefits currently paid out by DWP so they can design a new social security system with – and for – the people of Scotland. Take part here.

  • Nationwide: Pregnancy with IBD Research - Researchers at Southmead Hospital in Bristol would like to investigate an intervention to improve medication adherence in pregnancy for women living with IBD which will include face to face consultation and text messages that inform women about the benefits of taking medication. They will then undertake a trial which will take place in two hospitals over the first eighteen months to ensure it runs smoothly, then it will continue across six hospitals for a further three and a half years and include 334 women (167 will get the intervention and 167 will get standard care). Finally, they will examine whether women in the intervention programme take their medication more regularly throughout pregnancy and up to 6 weeks after giving birth. Please complete this quick survey to let the research team know what you think

  • Wales - The public have been asked for their views on health and social care as part of a review led by the Welsh Government - the review looks at ways of meeting need for health and care services, as well as expectations of what these services should provide. An online survey includes ten questions people can answer. Dr Ruth Hussey, Chair of the Review, said: 'We want our review to be founded on evidence and on the experiences and understanding of those people who use health and social care services in Wales, as well as those who deliver services. Public involvement is central to that process.'