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 healthcare over the last 3 years.
People with Crohn’s and Colitis told us that their health services have continued to be disrupted by the coronavirus pandemic and there’s been a big impact on their care. There were difficulties accessing GPs, specialists, medicines, tests, and procedures that have led to delays in diagnosis, flares, and complications. Mental wellbeing, relationships, and ability to work have also been affected. 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 people with Crohn’s and Colitis told us
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.
No face-to-face appointments and no real explanation or support.
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.
GP didn't know what to do, ended up in A&E as I couldn’t access IBD flareline.
Waiting times at A&E have been up to 10 hours. I have been sent home from A&E to come back to ambulatory care units in 2 days’ time with a fistula leaking faeces with no short-term care in place to manage this because of a lack of capacity in the system.
Urgently admitted under general surgery and told that gastro surgeons were unavailable to me.
Access to medicines, tests and procedures
- 18% have experienced disruption to getting medication over the previous 6 months.
- 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.
The delays in accessing my new medication have meant I have needed to take a course of steroids and have been unable to care for my 8-month-old at times. I have been waiting 2 months since requesting new medication and it is still not ready.
CT showed definite stricture and obstruction - Consultant said I need urgent colonoscopy with dilation to widen the stricture - was told 4 - 6 week wait - but now told I have no date but on the waiting list.
Need rectum removal and fitted with permanent stoma. Been waiting for nearly a year for this surgery after failing all medications and having a severe reaction to the last one. Currently on meds to manage some symptoms, but still continue to struggle daily.
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.
I have found the difficulty in accessing care emotionally exhausting and it meant my flare wasn’t treated for the first 5 weeks, which caused it to be the worst flare I have ever experienced.
Delays in getting clinic appointments, tests and then delays in reporting of tests and lack of a clear care plan has made it a very stressful and anxious time.
I struggle to look after my young baby because I am so unwell.
Changes to how patients 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.
I quite like telephone appointments, in some way it's easier to talk about bowels when you can't see each other, but l do like to see a doctor/nurse face to face from time to time.
I had an annual review with my consultant by telephone but during the discussion he offered me a face-to-face appointment. He was insistent that if I felt I wanted to see him in person he was very happy to see me.
Video appointments, due to this an abscess went undiagnosed.
I have never met my consultant and would appreciate an in-person appointment. I am concerned my appointments moving forwards will only be telephone.
Positive experiences
- Although it’s been an extremely challenging time for all, patients have reported very positive experiences of care and adaptations to services have brought opportunities.
I always receive excellent care from both my consultant & the specialist nurses. My appointments have been within the time scale i am expecting and the video consultations have suited me better than having to travel to my local hospital. When I have contacted the specialist nurses, I receive a call back the same day which I find exceptional considering the large area they cover.
What are we doing about this 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 have lots of exciting plans for 2022 which are focused on healthcare improvement – read our blog for more details.
- We will continue to provide information and resources to support people with Crohn’s and Colitis, 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?
- Use these results to support local decision-making about prioritisation, investment and potential redeployment.
- We would encourage you to use these results alongside your service’s IBD UK Benchmarking reports as your service refocuses, adapts, and redesigns for the future.
- Seek feedback from and involve your IBD patients in service redesign. Our Patient Engagement Toolkit may be helpful.
- Signpost your IBD patients to our resources, such as those identified here.
- Review published reports about virtual consultations to support decision-making. For example, Dr Will Zoom You Now: getting the most out of the virtual health and care experience or Attend Anywhere / Near Me video consulting service in Scotland, 2019-20.
- Share your experiences of service redesign with other healthcare professionals by emailing IBD UK and Crohn’s & Colitis UK’s Facebook forum for healthcare professionals.
