About IBD UK and the IBD Patient Survey
1. What is IBD UK and the IBD Standards?
IBD UK – a partnership of 17 patient and professional organisations working together for everyone affected by Inflammatory Bowel Disease (IBD) - came together to develop and publish standards that define what good care should look like for people with IBD. Find out more about the IBD Standards. Crohn’s & Colitis UK, the IBD Registry, CICRA and the Ileostomy and Internal Pouch Association are all part of IBD UK.
The IBD Standards say what high-quality care should look like at every point of the patient journey - from first symptoms, to diagnosis, treatment, surgery, inpatient care and ongoing care.
The aim of the IBD standards is to remove the variation in care and ensure that people with IBD receive safe, consistent, high-quality, personalised care, whatever their age and wherever they live in the UK. We want to encourage healthcare services to recognise what they are doing well and identify where they need to improve.
2. What is the IBD Patient Survey?
The first IBD Patient Survey was carried out in 2019. Over 10,000 of you told us your experiences and these were included in a range of reports that led to improvements in care for people with IBD. See here for more information. We need your help to ensure that the IBD Patient Survey in 2023 provides a comprehensive picture of the state of IBD care in the UK as we come out of the COVID-19 pandemic. Your responses will help drive change for people living with IBD.
3. Why haven’t you asked about X? That’s really important to me.
Questions in the survey relate directly to particular IBD Standards. Your answers will be used to grade (or ‘benchmark’) IBD services in terms of how well they are doing against the IBD Standards.
At the end of the survey, we will ask you to tell us what you think is the best aspect of the care that you receive, the area that most needs improvement, and the area that you feel is most important. You will be able to choose from a list of options which was co-designed by people living with IBD, so we hope that you will be able to find what you are looking for on this list. The results will help us to understand what matters most to you and whether we need to look into these areas in more detail in future surveys.
4. Do I have to answer all the questions?
You don’t have to answer all the questions in order to complete the survey. Some questions do require an answer (around 12 questions) and these are clearly marked with a red asterisk.
Who can take part
5. I have not yet been diagnosed, can I fill this in?
The IBD UK surveys are only for people in the UK who have been diagnosed with Inflammatory Bowel Disease. IBD includes Crohn's Disease, Ulcerative Colitis and other forms of Inflammatory Bowel Disease. If you have symptoms but have not been diagnosed by a hospital specialist, please do not complete this survey.
6. I don’t have Crohn’s Disease or Ulcerative Colitis but have another form of IBD, do you still want to hear from me?
Yes! We want to hear from people with all forms of IBD including Microscopic Colitis and Unclassified.
7. I’ve got IBS – can I fill this in?
If you have IBS (irritable bowel syndrome), this is not a form of IBD. You need to have a type of IBD to fill in this survey.
8. Is this survey just for adults?
This survey is for everyone with IBD. We want to hear from people of all ages and stages in their journey with IBD – whether you’re a child, young person or adult. We ask slightly different questions if you’re under 16, 16-21 or over 21.
If you have IBD and are under 16, you will need your parents or guardian to help you complete the IBD Patient Survey. Where it says 'your IBD', it is referring to the 'person who has IBD' throughout the survey.
9. Where do I need to live?
To take part in the IBD Patient Survey you have to live in either England, Wales, Scotland, or Northern Ireland. The Isle of Man is not covered as it is not part of the UK, although healthcare is free for residents and visitors from the UK and there is a reciprocal health agreement with the UK.
Data governance
10. What happens to my data? Is it safe and secure?
Your data will be held safely and securely by the IBD Registry, who are collecting survey responses on behalf of IBD UK. Find out more here.
11. My hospital is very small. Will my answers make me recognisable to them?
We will only make anonymised data available to IBD services that provide your care. If there are a very low number of respondents in an area, we will not be providing data to the service, to ensure that individuals cannot be identified.
12. I forgot my responses to the survey, can you send me my answers?
Once the IBD Patient Survey has been submitted, it is not possible for us to retrieve the data, because it is not related to an individual, as the process is totally confidential. There is an option to download your answers at the end of the survey – but this must be done before you leave the survey screen. We will not be able to send this to you after you have finished.
13. I can’t remember if I did the survey already. Can you tell me if I have?
As the survey is anonymous, we will not be able to tell you whether you have already completed it.
Other common queries
14. I’ve been receiving care from different hospitals OR I’ve moved hospitals recently – which hospital should I choose?
Please choose the hospital where you have received the majority of your care over the past 12 months. This also applies to all questions asking you about your care.
If you have not recently received hospital care or are not under the care of an IBD service, your responses are still valuable to us and we still want you to complete the survey. Where it asks you to select places you've received care in the past 12 months, please select 'Other'.
15. Can I do the survey twice for two different hospitals?
No. We would like you to complete the survey for the hospital in which you have received the majority of your care in the last 12 months.
16. I can’t find my hospital in the drop down list, what do I do?
If you type in any part of the hospital name, your hospital should appear. You need to make sure you click on the hospital name when it does appear, and if you do not click on the hospital name a message will appear saying that an error has occurred. If you try a few times and your hospital name still does not appear on the list, then contact us.
17. I don’t speak English – what should I do?
Do you have a friend or family member that could help you fill in the survey? Ask them if they might be willing to help.
18. I am affected by my Crohn’s or Colitis and need some support, where can I go?
You can visit the Patient Organisations page on the IBD UK website – where you will find information on the patient organisations within IBD UK: Crohn’s & Colitis UK, CICRA and the Ileostomy and Internal Pouch Association.
19. I’m having trouble with the survey, what should I do?
If you are having a problem with the survey, please let us know at info@ibduk.org. We are working closely with the IBD Registry, who are collecting the survey responses on behalf of IBD UK. We will work to resolve any problems as soon as possible.
20. Can I only take the survey online?
This survey is only available in an online format. If you do not have internet access, you can call the Crohn’s & Colitis UK Helpline on 0300 222 5700 to explore your options.
21. I have been diagnosed with IBD, but I haven't received any care in the past 12 months - can I still complete the survey.
Yes - you can still complete the survey and your answers are valuable to us. Some questions will also ask you about experiences you've had dating back further than 12 months.
Where the survey asks you to select places you've received care in the past 12 months, please select 'Other'.
For questions asking you about specific experiences with your care, please answer to the best of your ability. If the question is completely non-applicable, answer with "Neither agree nor disagree".
Any questions not covered?
Please contact info@ibduk.org