You told us that your health services have continued to be disrupted by the coronavirus pandemic and there’s been a big impact on your care. We’ve been using the results of this survey in submissions to inquiries, briefings for politicians and meetings with NHS and political decision-makers.  We’ve been calling for IBD care to be properly considered as waiting lists and resources are managed to tackle the backlog.

The results of the Healthcare Survey highlight huge challenges, but also some opportunities as services have adapted to the pandemic. We are very grateful for the care and support that healthcare professionals continue to give to people with Crohn’s and Colitis in such difficult circumstances.

What you told us

Difficulties accessing GPs, specialists, medicines, tests and procedures have led to delays in diagnosis, flares, and complications for people with Crohn’s and Colitis. Mental wellbeing, relationships, and ability to work have also been affected.

Diagnosis

• Getting a diagnosis during the pandemic has been difficult - 29% of respondents who had been diagnosed during the previous 12 months reported that this had taken more than a year. This is an increase from 26% in 2019.
• It has taken longer for treatment to start following diagnosis - 41% said it took more than two weeks for treatment to start. In 2019, only 24% reported waiting more than two weeks for treatment.

Access to healthcare professionals

• ​It’s been harder to get through to IBD teams for specialist advice, with 27% of those who tried to contact their advice line saying they did not get a response by the end of the next working day.
• 41% of those who had needed care from their GP during the previous 6 months said they had been unable to get the care they needed.
• 29% had not been able to get the help they needed from urgent care services.

Access to tests and procedures

• 24% of those who needed a colonoscopy during the previous 6 months said this had been cancelled, with less than half of these being given a new date.
• 29% of those who needed surgery during the previous 12 months had had this cancelled, with over half still not having a new date for it to take place.

Impact of difficulties accessing health services or treatment

• 22% of those who have needed health services or treatment during the previous 6 months said that difficulties accessing this had resulted in a flare of their condition.
• 24% reported that their mental health had been affected.
• This has led to time off work, affected relationships and ability to do everyday tasks.

Changes to how you access care

• 72% of those who needed clinic/outpatient appointments over the previous 6 months had mostly telephone appointments.3% had mostly video appointments.
• 9% had mostly face-to-face appointments.
• 10% had a balance of face-to-face and telephone or video appointments.
• Only 13% were offered a choice of appointment.

Quality of care

• Despite the challenges during this period, 56% felt that their quality of care was the same as before the pandemic, with a small proportion (4%) considering it was better.

What are we doing about your feedback?

• We are using the results of this survey to inform our responses to political inquiries, briefings to politicians and meetings with NHS leaders, to ensure that IBD care is fully considered as part of short- and longer-term planning and prioritisation. For example, these submissions to the House of Commons Health and Social Care Select Committee, Public Accounts Committee and Senedd Health and Social Care Committee.
• We are encouraging NHS services to use these results alongside their IBD UK Benchmarking reports as they refocus, adapt, and redesign for the future.
• We will continue to provide information and resources to support you, such as our information on what to do if you think you are a having a flare up, top tips for how to get the most out of your virtual appointment and Facebook Live on mental wellbeing.

What can you do?

• If you have any concerns about your health, please contact your IBD team, GP or NHS 111.
• For any difficulties getting hospital appointments or tests, you may wish to contact:
  • England - Patient Advice and Liaison Services (PALS)
  • Scotland – Patient Advice and Support Services
  • Northern Ireland - Patient and Client Council
  • Wales – Community Health Councils
• Check out the information available on the Crohn’s & Colitis UK website.
• Join our Campaigns Network, so you can help us use the results to campaign and make sure Crohn’s and Colitis are recognised and prioritised.
• Share your story with us. To help make our messages stronger, we need to tell the real stories of how people with Crohn’s and Colitis have been affected. We would like to hear from people whose condition has worsened due to issues with accessing health care services. In particular, those who have had investigations or surgery delayed and those whose diagnosis was delayed due to coronavirus.

This survey, which was conducted between August and October 2021, builds on our Life in Lockdown Survey of 2020 and IBD Patient Survey in 2019 to give us a view of your care over the last 3 years.