Changing society’s reponse to energy limiting conditions

Results from a survey by Disability Rights UK and Chronic Illness Inclusion

Disability Rights UK and Chronic Illness Inclusion are pleased to present the results of a survey of 1,710 people living with energy-limiting chronic illness (ELCI).

The high volume of responses to our survey provides us with a mandate, as well as a roadmap, for social justice and change from this large, but often neglected, group of disabled people.

Our findings clearly show that the vast majority of disabled people with ELCI encounter socially constructed barriers to wellbeing and participation in society, beyond the impact of their symptoms or impairment. Many of the barriers are unique to this group.

The greatest barrier to equality and inclusion named by our respondents is lack of understanding of ELCI as a type of disability. Second is the invalidation and disbelief that so often accompanies this ignorance. Alongside this, more than four in five respondents reported barriers, at least ‘to some extent’ to education, healthcare, income security, getting out and socialising with friends and family. Like other disabled people then, people with ELCI face inequalities across most areas of their lives.

Call for solutions

It comes as no surprise that, among the solutions demanded by people with ELCI, improved awareness and understanding of the lived experience of ELCI as a type of disability was by far the most common theme. Respondents called above all for a programme of education about ELCI aimed at employers, disability benefit assessors and decision makers and policy actors.  Another key group mentioned in relation to education was healthcare professionals. The stigma of disbelief and the dismissal of lived experience was too often traced back to the medical approach to ELCI. Healthcare staff need much better training in supporting patients with complex, debilitating and often poorly understood conditions to live as well as possible.

Environmental and other barriers to access and participation also need addressing. Many of the solutions are relatively simple, including more seating, less ambient noise, easier access to Blue Badge scheme, for example. Employment opportunities for people with ELCI can also be increased by relatively simple flexible working solutions such as remote working. The Covid19 lockdowns showed us how easily this can be done when the collective will is there.

The need to reframe perceptions of ELCI throughout society underpinned most of the solutions offered by our respondents. Until ELCI is seen and understood as a type of disability, the adjustments and accommodations needed for greater access and inclusion will remain off the disability inclusion menu and out of reach of those who need them.

Respondents called for much better systems in place to provide income security to those who cannot work full time, and support with daily living to empower them to contribute to society. These measures are crucial to ensure talent and potential are not lost to the brutal battle for day to day survival that traps so many lives. Disability assessment systems for PIP, ESA and social care must be redesigned to capture the lived experience of impairment. Disability policy making and service planning must include the ELCI impairment group as a major constituency among its stakeholders.

The need for an alliance for ELCI

We found that the people experiencing energy impairment face the same structural and systemic barriers regardless of their different diagnoses. This explains why they identify with the umbrella term of ELCI. This tells us that we must pool our efforts across patient representative organisations to secure social justice and disability rights for this group, not focus purely on medical solutions.

Previous research has shown that people with ELCI are often unsure if the label of ‘disabled person’ applies to them and a high proportion report feeling like an imposter if they identify as disabled.

Until we pay more attention to disabled people’s lived experience of impairment, rather than their diagnostic label, those with ELCI 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 ELCI communities alongside disability rights experts, to strengthen and deliver rights and support for people with energy limiting conditions so they are not left behind.

A large majority of our respondents expressed an interest in joining a panel of experts by experience to influence policy and advocate for change. Almost 1,000 of them volunteered their contact details to hear of opportunities to get directly involved.

Key findings:

  • Three quarters of respondents said that energy impairment was the main restricting feature of their condition.
  • People with a range of medical diagnoses, including Long Covid, fibromyalgia, ME/CFS and lupus, face the same structural barriers and injustices.
  • Lack of understanding of ELCI was cited as a barrier to inclusion by 98% of respondents. This was closely followed by attitudes of disbelief in their health condition or impairment, at 95%.
  • 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.
  • 8 in 10 respondents reported barriers to income security, including through the benefits system and over three quarters to accessing social care.
  • The call for increased awareness and understanding of the lived experience of ELCI as a type of disability was mentioned nearly twice as often as any of other types of solution for change.
  • Other key themes in the call for solutions were: access to public spaces and events, including online participation; more genuinely flexible working opportunities; improved systems of financial support for those unable to work full-time and the provision of support with daily living tasks; and a culture change among healthcare professionals’ attitudes to ELCIs, including training the latter to understand the lived experience of ELCI and support patients to live as well as possible with poorly understood chronic health conditions.
  • Changing perceptions of ELCI and shaping policies to include ELCI were the top priorities in terms of working for change.
  • Three quarters of our respondents replied ‘yes’ or ‘maybe’ to joining a panel of experts by experience to be involved in creating change.