How we are speaking up for you

02 February 2021

People with Crohn’s and Colitis have made it known that they want clearer information about the Covid-19 vaccines, access to care when they need it and support when they are shielding. 

Crohn’s & Colitis UK have been working with government departments, policy makers and parliamentarians across the UK to raise your concerns and help ensure that services and support meet your needs. 

We have written to politicians across all the political parties to increase their understanding of Crohn’s and Colitis, and to highlight the impact the coronavirus pandemic has had on access to health services, access to public toilets and employment and support.  

Policy Leads Elaine and Sarah talking to MP Hannah Bardell

In England, we have been having regular conversations with the Department of Health and Social Care (DHSC) and NHS England (NHSE) about the roll out of the vaccine. We’ve been pushing for clearer communication and access to the vaccine for people with Crohn’s and Colitis in line with the BSG risk grid. We are sharing your experiences of accessing health services with policy makers too, in order to ensure the needs of people with Crohn’s and Colitis are not forgotten. We are also working closely with other charities as part of a coalition to raise issues affecting Clinically Extremely Vulnerable and Clinically Vulnerable people. 

As a coalition we have written to the Minister for COVID Vaccine Deployment, Nadhim Zahawi MP, and we have also written to supermarkets about concerns around delivery charges. We have also been talking to Mayors Steven Rotherham (Liverpool) and Sadiq Khan (London), as well as Mayoral teams in Manchester and Newcastle about employment, furlough and access to toilets. 

We are delighted with the progress we are making with councils displaying our Not Every Disability Is Visible (NEDIV) campaign

In Wales, we have welcomed the appointment of the first all-Wales Clinical Lead on IBD and launched new research to policy makers, both national and local, that finds 50% more people with Crohn’s and Colitis than previously recognised.  We have also responded to the Welsh Government consultation on the new Transport Strategy – Llwybr Newydd – emphasising the need for accessible toilet facilities throughout the transport network and on rolling stock.  You may also have seen recent coverage on BBC Wales and S4C about the importance of access to public toilets for people with Crohn’s, colitis and other hidden conditions. 

In Scotland, we continue to work with the Scottish Government to implement the recommendations in The National Blueprint for Inflammatory Bowel Disease, particularly looking at how we can support IBD Services to improve IBD information and education to empower people to self-manage and live as well as possible with their condition. The Scottish Parliament Cross Party Group on IBD continues to be invaluable as a means of raising awareness and maintaining a political focus on Crohn’s and Colitis. 

With elections on the horizon in Scotland and Wales, we are preparing to launch manifesto`s calling on Parliamentary candidates to commit to improving care and services for people with Crohn's and Colitis if they are elected. 

In Northern Ireland, we are engaging with Members of the Legislative Assembly (MLAs) to highlight the needs of people with Crohn`s and Colitis and to secure support for the implementation of the IBD Standards across the region. 

If you wish to support this work, you can respond to our call for evidence or join our campaigns network. We want to hear from the widest range of people - people from every age group, disability, sex, gender identity and gender expression, race or ethnicity, religion or belief, sexual orientation or other personal circumstances. 

We won’t stop speaking up for people with Crohn’s & Colitis UK until we’ve achieved our goal of a world that understands and empowers people with Crohn’s and Colitis to live well and thrive. 

Thank you for your continued support.