Care that is personal to you should consider how you feel, respect your needs and values. It should be compassionate and enable you to make shared decisions with your healthcare professionals.
The IBD Standards state that “everyone living with IBD should have safe, consistent, high quality personalised care” but we know this isn’t always happening.
Crohn’s & Colitis UK, in partnership with doctors, nurses and people living with Crohn’s and Colitis, is working to ensure that person-centred or personalised care is embedded in IBD services across the UK. It is an NHS priority in each of the four countries. We want you to have choice and control over your care, and the information and support you need to live as well as possible.
We are working with local partners in Sheffield on a three-year project to re-design local IBD services, shaped by people with Crohn’s and Colitis. The learnings from this project will lead to better outcomes for people who live with Crohn’s and Colitis across the UK. Find out more about the AWARE-IBD project here.
In Scotland, working in partnership with the Scottish Government Modernising Patient Pathways Programme, we have developed tools and resources to support self-management: a flare card and personalised care plan. We are now working with partners in Lothian and Lanarkshire to pilot a supported self-management programme. We're working across NHS England on several exciting programmes to help support this changes across England. We're working with Getting It Right First Time (GIRFT) and NHS Rightcare - NHS England's improvement programmes on products designed for NHS leaders to improve IBD care with a specific focus in earlier diagnosis and more personalised care.
A pilot personalised care plan project is planned as part of the NHS Wales Health Collaborative’s IBD work programme. This would include an online tool which can be accessed and edited by both patients and hospitals and viewable by GPs.
We believe it’s fundamental that people with Crohn’s and Colitis are involved in the decisions about how healthcare is delivered - no project or service will be as good as it could be without the input of people affected by the conditions.
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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
Providing details of other specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.
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