Campaigning on your behalf in Spring 2023

Published 02 June 2023

With the Early Diagnosis campaign in full swing, communicating our latest research with decision makers, influencing policy change, and World IBD Day, the start of 2023 has been off to a good start. Here is a snapshot of how we have been campaigning on your behalf for better care, for better benefits, and better diagnosis.

Better Care

Politicians support World IBD Day  

We asked politicians across the UK to support World IBD Day. In Westminster, our Early Day Motion was signed by over 20 MPs and in Scotland, over a third of MSPs backed Clare Adamson’s motion. In Wales, we worked with the Welsh Conservative Health Spokesperson, Russell George MS, to call for greater awareness and a public awareness campaign of the symptoms of Crohn’s and Colitis. Following this, the Health Minister, Eluned Morgan MS published a written statement highlighting the progress in IBD care over the last few years and mentioned our Early Diagnosis campaign!  

Working with healthcare professionals in Wales 

On the 12 May, we worked with Dr Barney Hawthorne, the All-Wales Clinical Lead for IBD, to bring together healthcare professionals from across Wales to share best practice. 

We heard updates on the excellent work being done by IBD Nurses, in paediatric care, research, and on using data to improve services across the country, and discussed how to take this work forward. A new video resource on IBD and your diet was shared – you can watch it on our website here. 

Increasing access to medicines  

We have provided evidence to the National Institute of Health and Care Excellence (NICE) on several drugs since the start of the year, including Risankizumab, which has now been recommended as a treatment option for some people with Crohn’s Disease in England, Wales and Northern Ireland.  

Debating the future of stoma care 

We contributed to the stoma care debate in Westminster and worked with Giles Watling MP ahead of this debate in Westminster Hall.  

Inflammatory disease organisations come together to raise concerns about Homecare Medicines Services 

We are working in partnership with six patient charities and professional bodies to address the issues you have been facing with homecare. Together we wrote to the Chair of the National Homecare Medicines Committee to raise awareness of the impact that delays and cancellations to treatment delivery have on patients and the NHS. We also signed a joint statement calling for a national Government inquiry into homecare medicines delivery providers.  

Calling on the UK Government to publish the NHS Workforce plan   

Last month, we joined 85 patient charities and professional bodies calling on the Government to commit to a comprehensive and fully resourced response to the serious challenges faced by the NHS and social care workforce, which continue to badly impact the experiences of people accessing health and care. Read our joint statement here.

Better Life

Government publishes its Disability and Health White Paper  

We were pleased to see our calls for better condition-specific training for assessors were accepted, however we are concerned that PIP will become the primary way for people with a disability or long-term health condition to access financial support. We know that PIP is not fit for purpose for people with Crohn’s and Colitis. We will continue to work with the Disability Benefits Consortium towards a fairer benefits system. 

We respond to the Adult Disability Payment Mobility Criteria consultation 

We responded to the Scottish Government’s consultation on the mobility component of the Adult Disability Payment. We’ve called for the 50% rule for fluctuating conditions to be scrapped and for a more holistic approach to the development of the mobility eligibility criteria.

Better Diagnosis

Diagnosis in #WeeksNotYears 

We contacted 230 politicians across the UK about your experiences of diagnosis and urged them to support our campaign so that people with Crohn’s and Colitis are diagnosed within #WeeksNotYears 

Following this, we’ve met with seven politicians to discuss the impact of delayed diagnosis and how they can make the case for change. Fifteen parliamentary questions have been raised across the parliaments to understand what action governments are taking to improve early diagnosis. 

Ongoing partnership with the Scottish government on early diagnosis 

We are pleased to have worked with the Scottish Government on a new awareness campaign for the symptoms of Crohn’s and Colitis. You can listen to Michael Matheson MSP, Cabinet Secretary for NHS Recovery, Health and Social Care talk about why this campaign is so important here.   

This is the first Government led awareness campaign for Crohn’s and Colitis in the UK. You can find posters in GP surgeries, libraries and community centres across Scotland. Let us know if you see one! 

Campaigner meets the Prime Minister 

Our campaigner Steven Sharp met with the Prime Minister and his MP Hannah Bardell to discuss our early diagnosis campaign. We want to thank Steven for his incredible campaigning.  

Want to help us move early diagnosis up the political agenda? Here is our brand new step-by-step guide.


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Helpline service


We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

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If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

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