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DR UK/CII Energy Limiting Conditions survey shows huge impacts on daily living

15 December 2021

Four in five people with Energy Limiting Conditions face barriers to education, healthcare, work, income security, getting out and socialising with friends and family and over 90% have been accused of ‘not looking Disabled’ according to new research from Chronic Illness Inclusion (CII) and Disability Rights UK (DR UK).

A survey of 1,710 people with Energy Limiting Conditions clearly shows that many of the barriers are unique to this group.

One in three of the 14 million Disabled people in the UK lives with an Energy Limiting Condition, along with a further 1.1 million people dealing with Long Covid (a condition defined by symptoms lingering for longer than four weeks).

9 in 10 respondents reported barriers to paid work, as well as informal ways of contributing to society, socialising with friends and family, accessing healthcare services, cultural and leisure facilities, and getting out and about generally.

92% have been told they don’t look Disabled, and two-thirds don’t ask for help for fear of being labelled a fraud. 80% identify as Disabled.

74% said energy impairment or fatigue was a main restricting feature of their health condition(s)or impairment.

Catherine Hale, Director of CII said: “Alongside changing perceptions of Energy Limiting Conditions, environmental and other barriers to access and participation also need addressing. Many of the solutions are relatively simple, including more seating, less ambient noise, and easier access to the Blue Badge scheme. Employment opportunities for people with Energy Limiting Conditions can also be increased by relatively simple flexible working solutions such as remote working. The COVID-19 lockdowns showed us how easily this can be done when the collective will is there.

“Until Energy Limiting Conditions are seen and understood as a type of disability, the adjustments and accommodations needed for greater access and inclusion will remain out of reach of those who need them.”

DR UK CEO Kamran Mallick said: “Until we pay more attention to Disabled people’s lived experience of impairment, rather than their diagnostic label, those with Energy Limiting Conditions will remain invisible, marginalised and neglected as a group. 

“The tragic emergence of Long Covid as an enduring legacy of the pandemic makes the case for action even more urgent. We must now act together, with stakeholders from various Energy Limiting Condition communities alongside disability rights experts, to strengthen and deliver rights and support for people with energy limiting conditions so they are not left behind.”

Read the full Energy Limiting Conditions report here.