View this email in your browser
Chronic Illness Inclusion
Dear <<First Name>>

We have exciting news to share! Chronic Illness Inclusion has transitioned from a research project to a Disabled People’s User Led Organisation. 

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 aim to continue advocating for people with energy limiting chronic illness, energy impairment and chronic pain. We are governed by a management committee, more than 75% of whom are disabled people living with chronic illness. It is co-chaired by Fran Springfield and Kathy Bole.

We look forward to involving you in our work and amplifying your voice on the issues that matter to you. Find out more about our mission and our values here 

ELCI and social care

A man sitting on stairs looking exhausting, resting his head in his hand

One very important aim of our work at CII is to educate medical and social care professionals about ELCI. 

Recently Catherine Hale spoke at It’s Our Community, a conference on social care reform, to give health and social care professionals insight into how our conditions impact on our everyday lives. Her speech explained the high prevalence of energy limiting conditions, and why we are so often unseen, without our needs being met. 

The other aspect of Catherine’s talk focuses on the psychological effects of not being believed. Systemic disbelief is rarely talked or written about, but its affects are real and damage both physical and mental health. You can read her speech here.

Invitation to On Road Media peer support group

On Road has a new look...

Are you interested in joining a peer support group that helps you develop your confidence and skills in talking to the media about your experiences?

On Road Media is a charity that improves media coverage and public understanding of misrepresented groups and issues. We support people with first-hand experience of the issues to do safer, more strategic media work, bringing them together with journalists to inspire great content. We are currently recruiting people with lived experience to join our current project, which continues until July 2022. Participation will be via Zoom.

People who are interested in the media and in changing the narrative on poverty, (including the disability benefit system and the extra costs of living with disability) have the opportunity to collaborate behind-the-scenes with media professionals, directly influencing media coverage. 

Places in the peer support group are open to anyone who is based in the UK, has experience or expertise on poverty and/or being on a low income, whether in the past or in the present, are keen to learn about the media and willing to meet journalists and are available between March 2021 and July 2022. 

If you are interested or have any questions, please get in touch with Aishah Siddiqa at

 A duty of care?

The disability benefits system engenders a culture of systemic disbelief towards claimants, creating a hostile environment towards the very people it is supposed to support”, writes Fran Springfield. The recent inquest into the tragic death of Philippa Day has once again, shown the inadequacies and cruelty of a benefits system that damages the mental health of claimants. Fran investigates the duty of care the DWP has towards ‘vulnerable’ claimants in this exclusive piece        

Care charges ruled as discriminatory

A recent case in the High Court has found that Norfolk County Council had discriminated against a young disabled woman SH. 

Norfolk County Council, when calculating her care charges, treated SH the same as other people affected by the policy but who were able to do paid work.

It reduced her minimum income guarantee, and made the decision to take into account her enhanced benefits, meaning her chargeable income would increase to over £50 a week from April 2021.

Mr Justice Griffiths ruled that Norfolk County Council’s charging policy discriminates against severely disabled people, contrary to Article 14 read with Article 1 of Protocol 1 and/or Article 8 of the European Convention on Human Rights.

This judgement has implications for everyone in a similar situation to SH. Reclaiming Our Futures Alliance are working with other DPOs to ensure all local authorities are aware of this ruling and that they take action to ensure they are not discriminating against severely disabled people. 

More information on this case can be found here.

Take care, and stay safe,

From all at Chronic Illness Inclusion.
Chronic Illness Inclusion is generously supported by the Centre for Welfare Reform. We receive no core funding and we are very grateful for any donations to help cover our running costs.


Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp

Copyright © 2021 Chronic Illness Inclusion Project, All rights reserved.