Consultation outcome

Chronic illness inclusion project response

Updated 23 March 2020

1. Summary

The Chronic illness inclusion project response (CIIP) is pleased to respond to this important consultation. We believe that there is much room for improvement in how the Departmeent for Work and Pensions (DWP) involves disabled people, particularly those with energy limiting chronic illness (ELCI). Based on our extensive research, our key recommendations for improvement cover three main areas:

1. Building trust with disabled people by valuing lived experience of impairment and disability.

2. Ensuring representation from all impairment groups.

3. Accessibility of involvement processes.

2. Introduction

2.1 What is the Chronic Illness Inclusion Project (CIIP)

The CIIP was a major social action research project led by disabled people. It was part of the broader DRILL programme of disability research.

The CIIP investigated the lived experience of chronic illness through the framework of the social model of disability. We conducted an eight week online qualitative research forum among 20 people with a broad range of chronic illness diagnoses, followed by an online survey designed to test the focus group findings which garnered 2,300 responses.

75% of survey respondents self-reported as having the “stamina, breathing and fatigue” (SBF) impairment type which is the second largest impairment type group in the UK according to DWP’s disability data (Family Resources Survey, 2017). Our research is the only one of its kind to represent this important sub-group of disabled people within the claimant population.

Our research findings are contained in a major report (forthcoming): Energy impairment and disability inclusion: towards an advocacy movement for energy limiting chronic illness.

The CIIP has developed expertise in involving and consulting with hard-to-reach sections of the disabled community. Our methodologies for both qualitative and quantitative research are accessible to the housebound population with significant cognitive dysfunction.

2.2 What is energy limiting chronic illness?

Energy Limiting Chronic Illness (ELCI) is a long-term condition characterised by a debilitating mix of physical fatigue, cognitive fatigue and pain, alongside other diverse or fluctuating symptoms.

The overall impact of our condition is significantly reduced energy for essential everyday activity. Living with ELCI means having to carefully ration limited energy in order to accomplish basic tasks and avoid aggravating symptoms.

2.3 What is energy impairment?

Energy impairment is a term we have developed to convey the experience of energy limitation as a type of impairment or disability. Energy impairment is the main feature of ELCI but it may also be experienced by people with other impairments or health conditions as a secondary feature. Energy impairment is a form of hidden impairment.

DWP’s data on disability and impairment indicates that difficulties with stamina, breathing or fatigue (SBF) are the second most common impairment type among disabled people in the UK. Our extensive polling showed that people with impairment of SBF prefer the terms ELCI or energy impairment to define their experience.

2.4 Why better engagement matters for people with ELCI

Reforms to the benefits system since 2010 have not improved the life chances of disabled people. In fact, measures like PIP, the Work Capability Assessment and Universal Credit have been associated with a regression in disabled people’s human rights according to a United Nations investigation.

We believe that the reasons for this failure lie partly in the conceptual model of health and disability underpinning disability benefit reforms. In particular, the so-called “biopsychosocial model” (Waddell, Gordon and Aylward, 2005) bears little relation to disabled people’s lived experience of the relationship between work and health. This is especially the case with ELCI.

It is crucial that DWP learns from these failures. Measures to improve the involvement of disabled people in policy design must begin with valuing our expertise in managing ill health and impairment and elevating our lived experience. At the moment, disabled people with ELCI feel that their experience is denied, disbelieved and discredited by DWP’s disability assessment systems.

3. Question 1

Our engagement with DWP

3.1 Question 1 response

The CIIP has been invited to informal meetings with a member of the Strategy Division of the Disability and Housing Support Directorate. We were also invited to join the Research Engagement Group (REG) for the Uses of Disability Benefits research.

Purpose of engagement

The purpose of the informal meetings was to share our research findings to inform the on-going work on WCA reform. We shared findings on energy limiting chronic illness and energy impairment. In particular we discussed how the multidimensional nature, especially the impact of cognitive fatigue and dysfunction, are incompatible with many forms of paid employment, in ways which the WCA descriptors currently do not reflect.

The purpose of the REG was to inform the design of the research methodology and ethics, to ensure it was accessible to participants and ensure privacy and confidentiality.

Positives and negatives of engagement

The opportunity for informal conversation with a policy adviser was welcome. However, there was a lack of transparency about the progress and purpose of WCA reform work within DWP. It appeared that the purpose of meetings was to elicit approval for WCA reform work from the CIIP without sharing detail of what this work entailed.

As a result there was no way of assessing whether these informal conversations had any impact on policy development and design.

The REG engagement was a good opportunity to inform research ethics and methodology. The contracted researchers and research directors learned and adapted their research plan in response to participants’ comments. There was feedback following the event on how researchers incorporated comments from the REG.

Several other REG participants questioned and critiqued the rationale and overall design of the research. However, the scope of the REG was restricted to the practicalities of conducting the research. As a result there was a lost opportunity for disabled people and their representatives to inform the rationale and design of an important piece of research into the disability benefit system.

Moreover, with one or two exceptions, most members of the REG were representatives of large organisations for, rather than of, disabled people. This meant there was very little involvement from disabled people with lived experience of disability or health conditions, or experience of claiming disability benefits in designing the research.

Accessibility

There was no offer of support or adjustments to members of the REG for participating in the event. We faced considerable extra costs of travel due to ELCI. At the time these were covered by Access to Work but this only applies to people in stable employment. If DWP is to involve disabled people and their organisations in engagement events, a full range of support and access provisions must be available. See Q5 for more detail on ELCI and accessibility.

4. Question 2

Benefits of engaging with DWP

4.1 Question 2 response

We have not seen any tangible improvements to policies or practices for disabled people following our engagement with DWP. We acknowledge that our engagement so far has been limited.

5. Question 3

Based on your experiences, would you wish to engage with the DWP in future?

5.1 Question 2 response

The CIIP would wish to engage with DWP to improve the benefit system in future, especially the criteria and descriptors for WCA and Personal Independence Payment (PIP) assessments, the impact of Universal Credit.

Our concerns are about future involvement activities are:

1) that they could be tokenistic and not offer genuine opportunities for co-production of policy development with disabled people

2) that involvement activities would only be offered to large third sector organisations representing disabled people rather than by user-led organisations

3) that any involvement activities for disabled people themselves would not be accessible to people with severe ELCI or energy impairment

In section 5 we offer recommendations for improving DWP’s engagement with people with ELCI, based on our research findings.

6. Question 4

Our engagement with organisations outside of DWP

6.1 Question 4 response

The CIIP has engaged with the London Mayors’ Equality, Diversity and Inclusion Unit, the Commission on Social Security led by Experts by Experience and has been invited to an engagement event with the Equality and Human Rights Commission.

The main differences between these engagement events and were:

1. The recognition of potential barriers to participation faced by disabled people, and the provision of reasonable adjustments to enable participation.

2. Other stakeholders at these events were predominantly either disabled people with lived experience, or user-led organisations, rather than large third sector organisations representing disabled people.

7. Question 5

Improving DWP’s process of engagement with disabled people.

7.1 Question 5 response

Building trust with disabled people

Based on our focus group and survey findings, the DWP has a severe reputation problem among people with ELCI. The trust required for positive involvement and engagement must be restored.

Our research participants expressed the belief that their condition is not well understood by the DWP. In particular, the impact of energy impairment, which is multi-systemic and often entails significant cognitive dysfunction, is not taken seriously. Many participants encountered hostility and disbelief when interacting with DWP staff. Key results from our survey of 2,300 people with chronic illness include:

• When asked to select the most restricting feature of their health condition, the top two answers across a broad range of diagnoses were fatigue or energy limitation (43% of respondents) and pain (27%).

• 54% of respondents reported diagnoses classified as Diseases of the Nervous System, while 43% reported diagnoses classified as Diseases of the musculoskeletal system and connective tissue and 38% reported a comorbid condition classified under Mental, Behavioural and Neuro-development disorders under WHO ICD10.

• Focus group participants had experienced flawed decision making in assessments. Informal observations of appearance or behaviour were often extrapolated to incorrect judgements about their functional capacity and eligibility for benefits.

• More than 80% of respondents agreed (50% strongly agreed) that a better understanding of and accounting for ELCI would significantly improve their quality of life.

• When asked for policy change priorities, more than 80% of respondents had PIP in their top 3 choices.

• Interactions with DWP and healthcare staff were found to be the main source of oppressive attitudes about chronic illness with 44% of respondents saying that the negative attitudes of the DWP to ELCI had the biggest effect on their life.

People with ELCI see their most limiting symptoms explicitly dismissed and misunderstood by the DWP and its contractors. They encounter disbelief and disability denial when interacting with DWP processes.

These experiences of invalidation cause distress, anxiety and distrust towards DWP. In this climate it is difficult to see how DWP’s engagement with disabled people can be improved without fundamental reform of assessment systems and the rationale underpinning them. Our recommendations for overcoming this issue are:

• Reform of WCA and PIP assessments are integral to improving involvement and engagement with disabled people. The DWP must show that it cares about the reality of people’s lived experience by understanding the actual circumstances and choices faced by disabled people. They must create practical benchmarks reflecting realistic expectations of behaviour and how disabled people are able to interact with their environment and social institutions (work, government, etc). What is so desperately missing in our current system is a practical understanding of the capabilities and limitations of chronically ill people and a pragmatic approach to maintaining their wellbeing.

• The DWP must show an understanding that fatigue, energy limitation and pain are genuine limitations that can lead to a severe level of impairment and commit to trying to better capture these impairments.

• In the meantime, engagement methods will be more successful if the DWP can guarantee anonymity to participants. Anonymous consultations would reduce the legitimate fear among disabled people that their participation in any consultation process will be used by DWP as false evidence of their fitness for work or functional capacity.

Ensuring representation of all impairment groups

Impairment of “stamina, breathing and fatigue” is the second most common form of impairment among disabled adults in the UK, according to DWP’s own data (Family Resources Survey 2017). It is important that people with ELCI are represented in engagement processes.

Engagement with patient representative organisations for common energy limiting conditions for conditions such as fibromyalgia, lupus and ME is important. But DWP should also engage with organisations based on impairment type, not just medical diagnosis.

The DWP must show a commitment to including a representative sample of disabled people in their engagement process by making that process more accessible.

Accessibility of engagement processes and events

As previously discussed, for those with chronic illness, fatigue or energy impairment is often the most limiting feature. It is vitally important to understand the impact of energy impairment on our participation in engagement and involvement events and activities.

Our research findings indicate:

• People with ELCI are often mostly or entirely housebound. Taking part in events outside the home may be impossible or entail severe exacerbation for days or weeks afterwards.

• 88% of respondents have to plan and prioritise activities to take account of pain and fatigue daily. 60% of respondents have to plan and prioritise all basic life tasks (cooking, eating, basic hygiene, dressing, etc) daily. This means that they are often having to choose between basic life tasks as they are unable to reliably complete all tasks daily.

• Fatigue is often mental as well as physical. This mental fatigue (e.g. brain fog) is as important as the physical component, can be extremely severe and limit all activity. The common experience described by focus group members was that their intellect was not impaired but that cognitive function has a limited duration.

We believe the CIIP research methodology offers a good model for engagement with people with ELCI who may not be able to attend events in person. Our focus groups were conducted in a purpose-built online platform with topics (questions) which were kept open for response for 2 to 4 weeks.

This made participation accessible to those with fluctuating and unpredictable levels of cognitive function. Additionally, engagement and discussion on those topics made an increased depth and breadth of insight possible.

More specifically though we are making the following recommendations based on our research:

• Always have remote or online attendance options in any engagement event. Acknowledge that disabled people with the capability or support to attend in-person events are not representative of all impairment groups eligible for disability benefits.

• Online and telephone contribute options should be available wherever possible.

• Short deadlines (up to and including 6 weeks) are particularly problematic for those with SBF impairments as their health is often too unpredictable to reliably manage deadlines on this time scale.

• As much as possible, structure engagements to allow contributions to be conducted in short bursts (5 to 30 minutes) over a long period of time. This will allow respondents to rest and recover between periods of activity. It also means that users are less likely to have to choose between contributing and managing basic life tasks.

• Approach and include carers. Even with all the modifications suggested above, some people will be too impaired to contribute for themselves.