2021 – a year at Chronic Illness Inclusion
Our mission at CII is to shape policies, perceptions and practices to improve the lives of people with energy limiting conditions.
Our vision is a world in which our experience of disability is heard, believed and understood, our rights as disabled people are upheld, and our lives have equal value.
We took a look back at everything we did 2021 to realise this vision and take forward our mission. Bearing in mind we are a grassroots organisation, run entirely by volunteers living with chronic illness and energy limiting conditions, we have a lot to be proud of.
Here’s a round up of our activities over the year:
- “I already have a job… getting through the day” A major report on social security and work with ELCs, published in collaboration with Leeds University Business School and the Centre for Welfare Reform.
- A briefing paper on social security and employment with ELCs
- A report on the healthcare experiences of women with ELCs based on responses and testimonies from nearly 1,000 women and non-binary people with ELCs, revealing systemic invalidation and disbelief in healthcare encounters
- Removing societal barriers for disabled people with energy limiting conditions. A research report in collaboration with Disability Rights UK, based on 1,700 survey responses collected in September.
We submitted consultation responses to:
- Department of Health and Social Care’s inquiry into women’s health and healthcare
- Department for Work and Pensions‘ Green Paper on health and disability
- Work and Pensions Committee inquiry into PIP and ESA assessments.
- Dept for Business, Energy and Industrial Strategy consultation on the right to request flexible working, via a submission by Disability Rights UK.
UNCRPD We made a submission to the Shadow Report by Inclusion London in preparation for the UNCRPD’s follow up investigation into violations of disabled people’s human rights in the UK.
Disability Unit We met with the Disability Unit in Cabinet Office to discuss the importance of accounting for energy limiting conditions in the National Disability Strategy, and consulting with people with ELCs in the policy process
Work and Pensions Committee hearing Catherine Hale was invited to give oral evidence at the Work and Pensions committee’s inquiry into the disability employment gap.
Events and speaking engagements
- Webinar to launch the I already have a job report in April involving MPs Vicky Foxcroft and Carol Monaghan MSP and other guest speakers, with over 100 attendees.
- City University, School of Health Sciences seminar
- University of Liverpool, Centre for Medical and Environmental Humanities seminar
- Sightsavers charity
- IBM People with Diverse Abilities network for International Day of Disabled People
- Trade Union Congress‘ launch of Long Covid at work report.
- It’s Our Community webinar on social care in Sheffield.
Involvement and representation
In December we conducted focus group research among participants with a range of different ELCs, to hear their experiences of WCA and PIP assessments and their recommendations for improving the claim journey. This research was carried out on behalf of the Centre for Health and Disability Assessments.
Governance and organisational development
Previously, the Chronic Illness Inclusion Project was hosted by the Centre for Welfare Reform. In 2021 Chronic Illness Inclusion became an independent organisation, run by, and for, disabled people with ELCs.
- We developed our vision and values statements
- We held our first AGM
- We built our own independent website
- We have joined several networks and umbrella organisations that allow us to amplify our voice, including the DPO Forum, National Voices, Inclusion London and Equally Ours. We’ve also worked with Transport for All.