West MP Margaret Greenwood has met with disability campaigners in Parliament to
discuss Energy-Limiting Chronic Illness (ELCI) and energy impairment – the
preferred terms among people with long-term health conditions causing
significant fatigue, energy limitation, pain and cognitive fatigue which cannot
be mitigated by medical treatment, such as ME and Fibromyalgia.
Greenwood, who is also Shadow Secretary of State for Work and Pensions, met
with Catherine Hale and Stef Benstead who lead the Chronic Illness Inclusion
CIIP is hosted by the Centre for Welfare Reform and supported by Big Lottery
via the Disability Research on Independent Living and Learning programme.
research will inform a chronic illness manifesto due by 2020 and aims to
spearhead a user-led movement to influence policies and perceptions around
energy-limiting chronic illness.
project has a particular focus on social security and employment for people
with chronic illness. Campaigners explained how participants in a recent focus
group identified the current welfare system as the main disabling barrier they
faced. They were concerned about negative attitudes and unnecessary restriction
on their lives.
also said how, despite impairment of stamina, fatigue and breathing being the
second most common form of impairment experienced by disabled people in the UK,
people with ELCI are rarely considered as a group requiring specific policy
solutions, comparable to say, mental health or sensory impairment.
project aims to address this gap in representation and give campaigners a voice
in the decisions and policies that affect them.
was pleased to have the opportunity to meet with Catherine and Stef and to hear
about their project.
health conditions can be extremely difficult for people to manage and often
have an impact on whether or not they are able to stay in work.
can be a real blow to the people affected and their families. It really is
important that policy reflects the realities of people’s lives and that
suitable support is provided.
CIIP project is a really important piece of work and I look forward to hearing
more from Catherine and Stef as it develops.
would also welcome hearing from any of my constituents who might be interested
in the project or who may have views on the issues and barriers that people
with energy-limiting long-term health conditions face in our society.
do get in touch if you or a member of your family is affected by an
energy-limiting chronic health condition.”
Greenwood MP can be contacted by email firstname.lastname@example.org or by telephone 0151 792 3416.