Better Care
Politicians support World IBD Day
We asked politicians across the UK to support World IBD Day. In Westminster, our Early Day Motion was signed by over 20 MPs and in Scotland, over a third of MSPs backed Clare Adamson’s motion. In Wales, we worked with the Welsh Conservative Health Spokesperson, Russell George MS, to call for greater awareness and a public awareness campaign of the symptoms of Crohn’s and Colitis. Following this, the Health Minister, Eluned Morgan MS published a written statement highlighting the progress in IBD care over the last few years and mentioned our Early Diagnosis campaign!
Working with healthcare professionals in Wales
On the 12 May, we worked with Dr Barney Hawthorne, the All-Wales Clinical Lead for IBD, to bring together healthcare professionals from across Wales to share best practice.
We heard updates on the excellent work being done by IBD Nurses, in paediatric care, research, and on using data to improve services across the country, and discussed how to take this work forward. A new video resource on IBD and your diet was shared – you can watch it on our website here.
Increasing access to medicines
We have provided evidence to the National Institute of Health and Care Excellence (NICE) on several drugs since the start of the year, including Risankizumab, which has now been recommended as a treatment option for some people with Crohn’s Disease in England, Wales and Northern Ireland.
Debating the future of stoma care
We contributed to the stoma care debate in Westminster and worked with Giles Watling MP ahead of this debate in Westminster Hall.
Inflammatory disease organisations come together to raise concerns about Homecare Medicines Services
We are working in partnership with six patient charities and professional bodies to address the issues you have been facing with homecare. Together we wrote to the Chair of the National Homecare Medicines Committee to raise awareness of the impact that delays and cancellations to treatment delivery have on patients and the NHS. We also signed a joint statement calling for a national Government inquiry into homecare medicines delivery providers.
Calling on the UK Government to publish the NHS Workforce plan
Last month, we joined 85 patient charities and professional bodies calling on the Government to commit to a comprehensive and fully resourced response to the serious challenges faced by the NHS and social care workforce, which continue to badly impact the experiences of people accessing health and care. Read our joint statement here.
Better Life
Government publishes its Disability and Health White Paper
We were pleased to see our calls for better condition-specific training for assessors were accepted, however we are concerned that PIP will become the primary way for people with a disability or long-term health condition to access financial support. We know that PIP is not fit for purpose for people with Crohn’s and Colitis. We will continue to work with the Disability Benefits Consortium towards a fairer benefits system.
We respond to the Adult Disability Payment Mobility Criteria consultation
We responded to the Scottish Government’s consultation on the mobility component of the Adult Disability Payment. We’ve called for the 50% rule for fluctuating conditions to be scrapped and for a more holistic approach to the development of the mobility eligibility criteria.
Better Diagnosis
Diagnosis in #WeeksNotYears
We contacted 230 politicians across the UK about your experiences of diagnosis and urged them to support our campaign so that people with Crohn’s and Colitis are diagnosed within #WeeksNotYears.
Following this, we’ve met with seven politicians to discuss the impact of delayed diagnosis and how they can make the case for change. Fifteen parliamentary questions have been raised across the parliaments to understand what action governments are taking to improve early diagnosis.
Ongoing partnership with the Scottish government on early diagnosis
We are pleased to have worked with the Scottish Government on a new awareness campaign for the symptoms of Crohn’s and Colitis. You can listen to Michael Matheson MSP, Cabinet Secretary for NHS Recovery, Health and Social Care talk about why this campaign is so important here.
This is the first Government led awareness campaign for Crohn’s and Colitis in the UK. You can find posters in GP surgeries, libraries and community centres across Scotland. Let us know if you see one!
Campaigner meets the Prime Minister
Our campaigner Steven Sharp met with the Prime Minister and his MP Hannah Bardell to discuss our early diagnosis campaign. We want to thank Steven for his incredible campaigning.
Want to help us move early diagnosis up the political agenda? Here is our brand new step-by-step guide.
