Crohn’s & Colitis UK adapts to respond to COVID-19

The organisation has developed support and services for people across Scotland and the UK.

Crohn’s & Colitis UK are the UK’s leading charity for Crohn’s Disease and Ulcerative Colitis, the two main forms of Inflammatory Bowel Disease (IBD). The charity focuses on four aims: improving diagnosis and treatment, funding research to one day find a cure, raising awareness and supporting people with IBD to live fuller, freer lives.

Over 300,000 people in the UK have either Crohn’s or Colitis and Rachel Ainley, Health Services Programme Manager at Crohn’s & Colitis UK, believes that the real number could be almost double. People with IBD are facing a number of difficulties at the moment as a result of the pandemic, with many people with IBD taking medications which expose them to increased risk of severe illness from COVID-19. Another issue, Rachel says, is that not all people with IBD look vulnerable: “Many people affected by Crohn’s and Colitis don’t look vulnerable, but do need to shield, and this pandemic is challenging people’s perceptions of what ‘vulnerable’ looks like – something we work on as a charity through our ‘Not Every Disability Is Visible’ campaign.”

Crohn’s & Colitis UK is supporting people with IBD to face these challenges by providing extensive guidance on their website which is updated daily as the situation unfolds. This includes advice on risk categories for people with IBD, information about how IBD services are changing due to the pandemic, what to do if you think you are having a flare and information about working, benefits and finances. They have also hosted events live on Facebook to give people with IBD the opportunity to ask doctors and nurses for advice directly.

As well as this, Crohn’s & Colitis UK have a Helpline team who are available to offer support and information via phone, email and live chat 9am – 5pm from Monday to Friday. Rachel notes that the most common concerns emerging from conversations at the moment seem to be focused around employment, with people worried about themselves or their partners returning to work. Others haven’t received a shielding letter and need proof that they are high risk to show to their employer.

The charity’s Health Service Development team are also hearing concerns about delayed diagnosis due to cancellation of routine referrals, delays to planned surgery, redeployment of specialist teams to the pandemic response and difficulty accessing medicines in some care home services.

In terms of next steps, Crohn’s & Colitis UK are planning a survey of their members and supporters to gather further information about how the pandemic is affecting their lives, so that they can tailor their services appropriately.

Rachel believes the third sector, as a whole, has a crucial role to play in our collective response to COVID-19: “We provide a vital interface between the NHS and patients. Our information and support services have provided much needed support (to people with IBD) and taken the pressure off frontline NHS services.”

As with other third sector organisations, however, Crohn’s & Colitis UK are facing a number of organisational challenges as a result of COVID-19. The charity relies on donations to carry out their work and, with donations for charities across the country falling dramatically as a result of the pandemic, their income has been halved. As a result, the charity has had to furlough a third of their staff. This impact on their income and staffing levels has come at a time when demand for their services has increased by 400% on their helplines and 600% on their website.

Silver linings have emerged as a result of the COVID-19 pandemic, however, and Rachel hopes that positive changes are not lost when the lockdown ends: “We must ensure that the development of virtual clinics (telephone and video), for example, are not lost as services normalise. We hope to see increased options for how patients receive their care, with discussion about what is right for them, taking into account the whole person and not just their medical treatment – in line with the IBD Standards which were published last year by IBD UK.”

You can listen to a podcast with Rachel Ainley, Health Services Programme Manager at Crohn’s & Colitis UK, on the ALLIANCE’s Anchor.fm page (this link will take you away from our website).