Policy update

In recent weeks we’ve contributed to a wide range of consultations and discussions to ensure that the needs and concerns of our community are included on government and other relevant agendas throughout the UK.

Access to the Covid-19 vaccines

We’re working to ensure that people with Crohn’s and Colitis are prioritised appropriately for further vaccine doses and are included in ongoing research on coronavirus.

In early September, it was announced that people who are immunosuppressed would receive a third vaccine dose. This was after we, and other charities, raised concerns that some people may not have produced a strong immune response to the first two doses.

The third dose is an extension of the initial vaccination programme. It is separate from the booster doses also announced recently. If you’re taking immunosuppressants, find out about your eligibility for the third dose.

We understand the pressures the NHS is facing, but we need GPs and IBD healthcare professionals to work closely together to make sure no one with Crohn’s and Colitis who is eligible is missed when it comes to getting their coronavirus vaccine

Better healthcare for everyone with Crohn’s or Colitis

We recently submitted evidence to the House of Commons Health and Social Care Select Committee inquiry into clearing the NHS backlog caused by the pandemic.

We looked at early findings from our survey in which we asked you about your healthcare experiences in 2021. We know many people with Crohn’s and Colitis are finding it hard to see their GPs and healthcare teams, or to get medicines, investigations and surgery. 

We called for:

• More effective healthcare monitoring and support
• More staff for Inflammatory Bowel Disease care teams to meet the IBD Standards
• Appropriate prioritisation for surgery, so that people with Crohn’s and Colitis aren’t pushed to the back of the queue
• IBD to be made a priority with a clear strategy for improving care over the next 5 years

Following our letter to former NHS England Chief Executive, Simon Stevens, in which we shared the IBD UK report, we met with senior NHS directors and clinical leads to discuss how we can work together to improve care. It was a very constructive discussion, and we hope to have more news on this soon.

There’s still time to take our survey and tell us about your care this year. Every one of you that shares your experiences is helping us with more evidence to get the issues you’re facing in front of the right people.

Flexible and supportive employment

Working with other charities, including Kidney Care UK, Blood Cancer UK and Versus Arthritis, we have been raising awareness with employers of the need to ensure that people who may be at increased risk of complications from coronavirus are supported in the workplace. 

This is particularly important with furlough ending on 30th September and as some people who are immunosuppressed – because of a transplant, chemotherapy or treatment with biologics – may not have produced a strong immune response to the vaccine.

Joint work has included a letter to employers, media statement and briefing to MPs. We will be continuing to raise the importance of supporting flexible working, including working from home where possible and travelling to and from work outside peak hours, based on individual conversations and risk assessments.

Government and other consultations across the UK

We are working with over 100 other organisations and charities as part of the Disability Benefits Consortium to respond to the UK government’s Health and Disability Green Paper – Shaping Future Support.  We will be submitting our own response to this as well, highlighting the need for both the welfare benefits and employment support systems to work better for people with Crohn’s and Colitis as invisible and fluctuating conditions. Read more about this here.

Over the last few weeks, we’ve submitted views and evidence to the following:

• 'Data Saves Lives’, a strategy to make better use of data in healthcare from NHSX, the UK government’s healthcare technology unit
• Health Education England’s Strategic Framework for health and social care workforce planning, which aims to prepare for future staffing needs in England
• A consultation on plans to raise the age of entitlement to free prescriptions in England from 60 to 66, a move that would disadvantage those with long-term conditions such as Crohn’s and Colitis
• The Health and Social Care Committee in Wales, to which we proposed that IBD services are a focus topic for the upcoming meeting
• ‘What Matters to You?’, a consultation on priorities for Scotland from the Scottish Parliament’s committees to ensure these cover what really matters to people. We highlighted our Scottish Manifesto calls for equality of care, access to toilets and opportunity for people living with Crohn’s and Colitis
• London Assembly Health Committee investigation into public toilets in London

We will keep you updated on developments in these areas.