The cost of living with Crohn's or Colitis can be substantial. We are campaigning to ensure that benefits help you meet the extra living costs, and live with independence and dignity. And when you are unable to work, we want benefits to provide you a safety net.
However, many of you have told us that you aren't getting the support you need or being treated fairly and with respect, because of a lack of understanding about Crohn’s and Colitis and living with an invisible health condition or disability.
We are here to change that.
Based on what you have shared with us we believe that the Personal Independence Payment (PIP) and Work Capability Assessment (WCA) are not fit for purpose. Neither the ESA nor PIP assessments are structured to accommodate or understand fluctuation for people with conditions such as MS, Inflammatory Bowel Disease, mental illness, ME, Parkinson’s, and rheumatoid arthritis. You have told us that the questions and prompts on the application form do not enable you to fully explain how your Crohn’s and Colitis condition affects you, nor how their condition can fluctuate.
We are working with policymakers, politicians, and benefit assessors to improve the processes for applying for benefits, how they are assessed, and that they fully cover the costs of disability or being unable to work. We are also a member of the Disability Benefits Consortium.
We are calling for:
A review of the assessment process, in particular, application forms or interview questions to make sure people can fully explain how their condition affects them.
Specific training and resources for assessors on fluctuating conditions, including a focus on the need for a supportive and holistic approach.
A review of descriptors to consider the fluctuating nature of some conditions more effectively, as well as hidden symptoms including pain and fatigue. In England, the 50% measure should be reviewed by the Department of Work and Pensions as it cannot accurately reflect the reality of living with a fluctuating condition. Crohn’s & Colitis UK suggest a much more holistic approach which includes looking at people’s best and worst days, as well as the use of a fatigue rating scale.
To cease use of informal observations in assessments. We also recommend that the reliability criteria and definitions must be embedded within the wording of every descriptor and should be applied to all informal observations. Assessors’ reports must set out evidence why they consider that each activity can be carried out safely, to an acceptable standard, repeatedly, and in a reasonable time.
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.
Signposting you to 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).