Written evidence from Chronic Illness Inclusion (HAB0066)



Chronic Illness Inclusion (CII) is pleased to respond to the Work and Pensions Committee’s call for evidence on health assessments for disability benefits. CII represents a large, but hidden, sub-group of disabled people with energy-limiting conditions whose needs are poorly understood by society and insufficiently accounted for by government departments.

CII shares the concerns of the Committee that assessments for ESA and PIP, are often flawed, leading to incorrect decisions on eligibility for these benefits. Disabled people with ELCI have told us about various problems with assessments identified by the Committee, including concerns over the quality of reports and the expertise of assessors; how effectively the DWP uses additional evidence in decision making, the stress and deterioration in health as a result of the onerous and often adversarial claims and assessment process.

However, due to our limited capacity as a voluntary, user-led organisation for people with chronic illness, we are focusing our response only on the most crucial issue identified in our research:

The WCA and PIP assessment systems fail, in many respects, to capture our lived experience of impairment. In too many cases they effectively deny our needs for support.

This submission is, therefore, solely concerned with the suitability of assessments, including whether the descriptors for WCA and PIP accurately assess functional impairment (Question 3), and accurately assess claimants’ ability to work (Question 4).

Our submission is based upon user-led research carried out by the Chronic Illness Inclusion Project (CIIP) in 2018 for the DRILL programme of disability research.[1] CIIP was a mixed methods research project, including a survey of over 2,000 disabled people. Our research findings form the basis of a report and briefing paper on employment and social security with energy-limiting chronic illness (ELCI), in collaboration with Leeds University Business School and Leeds Social Science Institute.[2] It is the first to consider ELCI as a significant sub-group of disabled people.

About Chronic Illness Inclusion

CII is a Disabled People’s Organisation giving a voice to disabled people with energy limiting chronic illness (ELCI), energy impairment and chronic pain. CII exists to influence policies and perceptions around chronic illness, and to promote our rights as disabled people.

What is Energy Limiting Chronic Illness (ELCI)?

ELCI is closely aligned with impairment of stamina, breathing, or fatigue, which is reported by approximately one in three disabled people of working age in the UK.[3] According to our research, ELCI includes musculoskeletal, neurological, endocrine, respiratory, autonomic and autoimmune conditions such as ME/CFS, Long Covid, fibromyalgia, Ehlers-Danlos Syndrome, multiple sclerosis, COPD, lupus and thyroid problems. Around 2 in 5 survey respondents with ELCI report a co-morbid mental health condition. [4]

ELCI and energy impairment are new terms, born out of participatory research by and with disabled people with physical chronic illness.[5] They reflect the lived experience and impact of many chronic illnesses.

ELCI is a debilitating mix of physical fatigue, cognitive fatigue and pain alongside other diverse illness symptoms. The main feature of ELCI is energy impairment: a generalised limitation on capacity for activity. Energy impairment can also be a secondary feature of other impairment types. People with ELCI experience ‘payback’: a disproportionate increase in pain, fatigue and other illness symptoms as a consequence of activity, and as a result of which prolonged rest is required to prevent deterioration in health. The ability to manage activity in accordance with energy limitation is paramount for the health of people with ELCI.

ELCI and work

With regard to work, the primary limitation for people with ELCI is the amount, not the type, of work. The main employment adjustments include reduction in hours, removing travel requirements, flexible hours, and maximum autonomy of pace. Energy impairment is much less easily mitigated by aids, adaptations or adjustments to the work environment than, for example, mobility and sensory impairments. This is because energy impairment is primarily a restriction in capacity for activity.

The relationship between overexertion and increased disability means that in many cases, work is not good for health for people with ELCI. In order to have a health-sustaining role, work requirements must not exceed a person’s limited energy capacity, and it must be integrated into their health management strategies of pacing, rest and work-life balance.

Social security policy and employment policy are inextricably linked when addressing barriers to work and inclusion for people with ELCI. The primary adjustment for employment is reduced hours. Such part-time work is far less likely to result in a liveable income, and therefore employment is rarely a route to financial independence for people with ELCI.


The suitability of descriptors for ESA and PIP

Questions 3 and 4


CII shares the Committee’s concerns about whether the descriptors (the basis on which the Department decides eligibility for benefit) accurately reflect the impact of people’s health conditions on their daily lives and ability to work.

The current points-based approach used by PIP and the WCA is fundamentally unsuited to the assessment of people with ELCI. The descriptors fail to accurately assess functional impairment, either in relation to daily living activities, or in relation to work-related activity. Both systems fail to adequately capture the impact of fluctuating conditions and dynamic disability; both systems fail to account for the impact of cognitive fatigue and dysfunction, and both do not capture the impact of an overall limitation of energy on work or daily living.

Our analysis of the problems with WCA and PIP assessments includes recommendations for immediate reforms to the existing system, as well as recommendations for a complete redesign of the methods and principles of disability assessment over the longer term.


Problems with WCA and PIP assessments


1.      Decontextualised activities

Both assessments consider a range of activities or functions in isolation from each other. Current assessment systems do not consider how performance on one activity can affect performance on another, and therefore implicitly assume and assess people as though there is no such effect. The consideration by assessors of whether an activity can be performed ‘repeatedly’ is irrelevant because it still only addresses activities in isolation from each other and does not address the interdependence of daily living activities in everyday life. 

Living with ELCI means rationing limited units of energy. A person may theoretically be able to perform three types of activity: A, B and C (eg cooking, washing themselves and dressing). However, the reality of energy impairment means that performing activity A may deplete the energy available for activities B and C in any one day. The descriptors only permit consideration of the theoretical ability to perform each activity in the abstract, not in the real-world context where daily living activities are interdependent of each other. The descriptors fail to account for the significant, negative cumulative impact from multiple daily living or work-related activities.

Consequently, the functional limitation of people with ELCI is grossly underestimated. They are likely to be found fit for work or not to have substantial extra costs, when in reality they experience substantial limitations every day because every day. 

The impact of energy impairment can only be captured within the holistic context of daily living, and over a period of time. The flaws in the current descriptors cannot be addressed by tinkering with the current tick box system of assessment. In the longer term, a much more holistic assessment method is needed, which we outline below.


2.      The failure to capture the impact of cognitive fatigue and related dysfunction

Cognitive fatigue and related dysfunction (short-term memory, concentration, communication, and executive function difficulties), sometimes referred to as ‘brain fog’, is often the most restricting feature of ELCI in terms of work capability and daily living activities (see Introduction). The WCA and PIP assessments effectively exclude ELCIs from the descriptors for Mental, Cognitive and Intellectual Function (WCA) and for Communicating Verbally, Engaging with Other People and Making Budgeting Decisions (PIP). The DWP’s guidance to assessors on the scope of descriptors and activities[6] clarifies that activities are intended for certain diagnoses.

For example, in relation to Activity 13 in the WCA: Initiating and completing personal action, guidance to assessors states:

“[This activity] is intended to reflect difficulties that may be encountered by people with conditions such as psychosis, OCD, autism and learning disability. A very severe depressive illness that results in apathy, or abnormal levels of mental fatigue, may result in problems in this area.”- Revised WCA Handbook, Centre for Health and Disability Assessments, p131

This is entirely at odds with the principle of a functional assessment that looks, not at a person’s diagnosis, but at how that condition affects their function, which is the stated aim of the WCA and PIP assessment method. Restricting the application of descriptors to some diagnoses and thereby effectively excluding others is incompatible with a functional assessment.

Assessors must apply the cognitive, mental and intellectual descriptors to ELCIs where cognitive fatigue and dysfunction are key restricting factors in work capability and daily living activities, such as learning tasks, awareness of hazards, initiating and completing personal action, and coping with social engagement. With regard to PIP, assessors must consider the impact of cognitive fatigue and dysfunction on communicating verbally, engaging with other people and making budgeting decisions.


3.      WCA: the lack of a quantitative measure of work capability 

The WCA gives no indication of the most critical indicator of work capability among disabled people with ELCI, which is how many hours per week they can work, repeatedly and reliably, without negatively impacting their health.

Key considerations to be made in assessment of hours per week of work include:

Future assessments should include indicators of how many hours per week claimants can work repeatedly, reliably and without damaging their health.


Longer term reform of disability assessment systems and principles

We recommend a fundamental redesign of the WCA and PIP assessments in partnership with disabled people with ELCI, as well as other impairment groups. The principles of disability assessment should be rooted in lived experiences of impairment and the impact on work and daily living. This entails:



November 2021


[1] See Disability Research into Independent Living and Learning https://www.disabilityrightsuk.org/policy-campaigns/drill-programme/about-drill-programme

[2] Hale, C. et al. (2021) “I already have a job… getting through the day: ELCI, social inclusion, employment and social security. https://chronicillnessinclusion.org.uk/wp-content/uploads/2021/04/CfWR-ELCI-and-Work-b.pdf

Briefing paper https://chronicillnessinclusion.org.uk/wp-content/uploads/2021/06/CfWRBriefingELCIWork-final.pdf

[3] DWP (2017/18) Family Resources Survey

[4] Hale, C. et al. (2019) Energy impairment and disability inclusion. Centre for Welfare Reform.

[5] Ibid.

[6] https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/925097/wca-handbook.pdf