We are very excited to share with you our plans for 2022 and how we are building on our earlier work this year!
Earlier diagnosis and better care programme
Released last year, the IBD UK national report, Crohn’s & Colitis Care in the UK, provided vital evidence to show why early diagnosis is so important.
When people aren’t diagnosed quickly enough, this can impact on many aspects of their life and result in their condition being harder to treat. But it’s taking too long for people to be diagnosed.
- 26% of those responding to the IBD Patient Survey waited more than a year for a diagnosis
- 41% had visited Accident and Emergency (A&E) at least once before being diagnosed, with 12% visiting three or more times
An estimated 500,000 people in the UK are living with Crohn’s or Colitis, but overall public knowledge and understanding of the conditions is low. We are planning a public campaign to raise awareness amongst the public of the symptoms of Crohn’s and Colitis.
We want to support community healthcare professionals, including GPs, nurses, and pharmacists, so they can identify when someone might be living undiagnosed with one of the conditions.
Since the launch of the report, we’ve taken its messages to politicians, policy makers and NHS leaders from across the UK. We’ve had numerous conversations and meetings that have led to greater alignment of NHS guidelines and programmes with the IBD Standards. We were delighted to see IBD debated in the UK Parliament, over 30 parliamentary questions tabled and politicians from across the UK signing up to motions on IBD. We want to raise awareness of Crohn’s and Colitis amongst politicians across the UK and continue to engage with political and NHS decision-makers to ensure that IBD and the need for earlier diagnosis, is recognised and prioritised.
This new programme of work will be underpinned by evidence and insight gathered by our new Evidence and Insight Team. This will include a review of research that has already been published and gathering new data to understand people’s experience of diagnosis and the barriers they faced.
IBD UK
We chair IBD UK and ensure that the needs of people living with Crohn’s and Colitis are at the centre of the work of this alliance. Following the 2019/20 UK-wide benchmarking and consequent local and national reports, quality improvement is a key area of focus for IBD UK in 2022, and a QI working group will discuss how IBD UK can support this, including continuing to share tools and case studies. If you have any suggestions on new resources you’d like to see, then please get in touch. A second working group has also started preparations for the next round of IBD UK Benchmarking in Spring 2023. We look forward to sharing more information about this in due course.
Working with NHS and government-led programmes across the UK
We’ll continue to work with partners across the four nations to improve IBD care in line with the areas of focus identified in the IBD UK report: earlier diagnosis, personalised care, rapid access to specialist advice and effective multidisciplinary working. In Wales, this will be through the NHS Wales Health Collaborative IBD Working Group led by the All-Wales IBD Clinical Lead, Dr Barney Hawthorne. In Scotland, the Modernising Patient Pathways Programme and in Northern Ireland, the IBD Interest Group, will be leading work to improve care. In England, we’ll continue to support the work led by Dr Beverley Oates for the Getting It Right First Time (GIRFT) gastroenterology workstream and on the partnership IBD RightCare Scenario. We’ll also continue to engage with NHS leaders and policymakers across the UK on the development and implementation of strategies and guidance to reform outpatient care and to ensure appropriate prioritisation for diagnostics and surgery for IBD.
IBD nursing
This year we’ll continue our community days for our new and existing cohorts of Crohn’s & Colitis UK nurses. The first community day will focus on how IBD nurse specialists can deliver personalised care. We are currently reviewing our advice line training and look forward to sharing more on this soon. We will also be conducting an IBD nursing audit, to ensure we have an up-to-date picture of the IBD nursing workforce across the UK. Our policy response to Comprehensive Spending Review and Health Education England long term strategy have called for an investment in greater number of IBD nurses and gastroenterologists.
AWARE-IBD
Our involvement in the AWARE-IBD project ensures people with Crohn’s and Colitis are at the centre of improvements to the IBD service in Sheffield. We will continue to chair the patient oversight committee and are looking forward to a patient coach being recruited to lead the service improvements. They will work alongside clinicians and patients to identify areas for improvement and make changes to the IBD service, which the research team will measure the impact of. We look forward to sharing more on this project throughout the year!
ALLIANCE Supported Self-Management Project
We have been selected by the Health and Social Care Alliance Scotland, the Scottish body for third sector organisations, to deliver a programme to support people with Crohn’s and Colitis to take an active role in their care. People living with Crohn’s and Colitis are directly involved in the development of the programme. This will involve looking at what resources are currently available to support self-management and identifying what additional resources may be required and what extra education and support is needed. We’ll bring this all together with our project partners to deliver a structured, supported self-management programme. This approach to care will be tested, working with IBD teams in two hospitals. The intention is for this to become embedded into everyday practice and interaction and scaled up to IBD services across Scotland and potentially UK-wide.
James Lind Alliance Priority Setting Partnership
We are part of a group of patients, carers, healthcare professionals, and researchers who are collaborating on a project that aims to identify the top 10 research priorities for digital technology in adolescents and young persons with inflammatory bowel disease (IBD). This Priority Setting Partnership (PSP) is a collaboration between the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSGHAN), British Society of Gastroenterology (BSG), the James Lind Alliance (JLA), and NIHR Children and Young People MedTech Co-operative.
The project team have created a short survey to identify as many unanswered questions as possible. The survey only takes 5-10 minutes to complete and is open to young people with IBD as well as health professionals working with young people with IBD.
For more information and to complete the survey here. If you have any questions, please email the project coordinator.
We want to work with you, the healthcare professionals supporting our community, in order to improve care. If you’re interested in getting involved in any of the areas of work, we’ve mentioned then please do get in touch with us.
Thank you for reading and finding out more about our upcoming work for 2022. Please do share on with colleagues and encourage them to sign up to our newsletter and Facebook group to receive further updates on this work directly.
February 2022
