Written evidence from William Day, Dr Rachel Shaw and Dr Dan Shepperd (HAB0085)



I am a graduate teaching assistant (GTA) and PhD student at Aston University, Birmingham. My current research seeks to understand individuals’ experiences of living with chronic invisible or 'unseen' illnesses within the wider context of UK welfare reforms. The main empirical research of my PhD is longitudinal and qualitative in design: following a group of individuals aged between 18-30 over a period of four years as they navigate living with chronic, unseen health conditions whilst claiming ESA and/or PIP. Participants included within the study live with a varied range of health conditions: myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS); arthritis; multiple sclerosis (MS); fibromyalgia; and idiopathic chronic back pain. I have experience of living with a chronic health condition and working (although not claiming) within the administration and delivery of PIP: I was employed by Capita Health and Wellbeing between the years 2014 - 2016. 

My current research takes a 'pluralistic' approach; that is combining phenomenological (focusing on the meanings of people’s experiences) and discursive approaches (discursive (examining language use and its performative functions) to consider both the micro and macro implications of government policies, from a health/social psychology perspective. The wider PhD project makes use of multiple modalities of data (interviews, images, film, news media, policy documents etc.), as I look to explore the holistic ways in which belonging, heath, stigma and wellbeing are constructed and experienced by individuals. My PhD is supervised by Dr Rachel Shaw, a Health Psychologist, and Dr Dan Shepperd, expert in social psychology.

The evidence drawn upon in this submission comes from both this ongoing PhD project (Day, Shepperd & Shaw) and peer-reviewed published research from an earlier MSc. project (Day & Shaw, 2020), which sought to explore how the work capability assessment (WCA) was experienced by individuals living with unseen health conditions (e.g., fibromyalgia, hepatitis C, repetitive strain injury). The aim of this submission of evidence is to share the insights gained through this research; how these insights could potentially inform future reforms to the process of claiming health-related benefits.


Suitability of assessments:


  1. How could DWP improve the quality of assessments for health-related benefits?

A greater inclusion and significance given to healthcare professionals’ evidence would likely improve the quality of initial assessments. Claimants reported feeling ‘dis-believed’ by assessors (Day, Shepperd & Shaw). An approach to assessment that began with an attempt at understanding and accepting individuals’ lived experiences by assessors would improve the quality of assessments. Claimants often noted errors, impossibilities or manipulations in assessment reports (Day, Shepperd & Shaw). The removal of target metrics for assessors would likely lead to an increased faith in the accuracy and quality of reports produced by assessors. 

4. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?

Related to the understanding of their condition within the context of the WCA, claimants expressed a level of dismay at the categorisation process of ‘capability’ (Day & Shaw, 2020). There was no consideration of the effects of an action (i.e., potential for future pain) or the unusual methods developed to combat illness limitations. Instead, with an emphasis on an individual’s potential to complete the action (capability), many claimants felt their experiences reduced to an over-simplified and unrepresentative recorded response. The use of ‘tick boxes’ was a reoccurring symbolic barrier for most participants, representing a tangible, dehumanising, summary of their experiences.

6. How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?

Increasing the ‘weight’ of importance given to medical evidence would enable a greater inclusion of clinical expertise without the need for a separate assessment. The benefits of such an approach would be, potentially, a more holistic understanding of the possible daily impacts of the health condition. Rather than the ‘one off’, snapshot, gained through a face-to-face assessment, an increased reliance on clinician input would allow for a comprehensive inclusion of medical expertise. Claimants regularly speak of medical evidence from healthcare professionals being ignored. Claimants felt that all that was salient was how they presented within the context of their assessment (Day, Shepperd & Shaw). However, the relationship between individuals living with chronic health conditions and healthcare professionals often can be fraught. There is a lengthy ‘battle’ to receive diagnosis of chronic health conditions (Day & Shaw, 2020). Symptoms can be dismissed by general practitioners as being “psychosomatic” (Day, Shepperd & Shaw). The search for ‘good’ and supportive practitioners is a common and shared experience for individuals living with chronic health conditions (Day & Shaw, 2020). Were a privileging of clinical input to take a foundational role within the decision-making process this could, therefore, be a potential drawback for individuals living with chronic health conditions. Ideally an increased role for clinicians (or medical evidence) would be to provide wider context to individuals’ own experiences: not to overshadow the lived experience of their condition.

7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?

Claimants report the dehumanised ways in which they were treated during face-to-face assessments; feeling as if they were being observed and processed by “robotic” assessors. Claimants’ accounts of living with a chronic health condition are reduced down into tick boxes responses; there is little desire, need or capacity to engage ‘humanely’ with these stories (Day, Shepperd & Shaw; Day & Shaw, 2020). An approach to assessment that permits a limited number of potential responses (such as “yes”, “no”, or “it varies”) fails to capture the variable, often unpredictable, nature of chronic health conditions. A greater level of understanding and empathy from assessors – alongside an increased role for medical evidence in the assessment process – may lead to a more ‘accurate’ initial assessments, thereby reducing the number of tribunals. Considering the subjective aspects of illness in a genuinely holistic manner may produce assessments that capture the complexities of life with a chronic health condition. For example, utilisation of a conceptual framework of care which prioritises people’s lived experience together with the shared and unshared qualities of that experience would be beneficial. This humanised approach to people with chronic conditions going through these assessments would consider as standard the following: people’s use or need of particular kinds of space, their conceptualisation of time in terms of how a typical day is lived, but also in relation to the longer-term vision of the future with their chronic condition, how their condition impacts on their body day-to-day, and how all these things affect a person’s mood. This is known as lifeworld-led care (Todres, Galvin & Dahlberg, 2007). Incorporating this holistic approach, based on claimants’ lived experience would create assessments that could more accurately, and fairly, assess capability (Day & Shaw, 2020).

a. What could DWP change earlier in the process to ensure that fewer cases go to appeal?

Changes to the assessment process that allows for a greater inclusion of medical evidence, as well as cultivating a culture in which assessors that are trained to be understanding and empathetic (rather than beginning from a position of suspicion) would likely reduce the number of cases that go through the appeals process.

The impact of the pandemic:

10. What lessons should the Department learn from the way that it handled claims for health-related benefit claims during the pandemic: for example, relying to a greater extent on paper-based assessments, or using remote/telephone assessments?

A number of claimants in our ongoing research project experienced reassessments during the pandemic. These reassessments were either completed as paper-based assessments or completed remotely. Both approaches were welcomed by claimants. They found the process to be more accurate, less intrusive, and less physically demanding than traditional assessment processes (Day, Shepperd & Shaw). All claimants should be offered a choice as individuals will have different preferences for paper-based assessments or remote/telephone assessments.

  1.                 Is there a case for making some of the changes permanent?

Yes. Within battles for diagnosis and recognition, a deprivation of autonomy is a common experience for individuals living with chronic health conditions (Day & Shaw, 2020). A need for greater autonomy can be accommodated by a welfare system that allows claimants to choose how they would be best assessed.

The impact of assessment/application on claimants:

13. DWP recently published research on the impact of applying for PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?

One of the ways in which the PIP and ESA processes impacts on claimant wellbeing is the “looming dread of reassessments. The awareness that whatever decision they receive will always only be temporary saturates claimants’ daily lives. There is the fear of the brown envelope arriving from the DWP: a call to reassessment (Day & Shaw, 2020). There is the anxiety that, even on days of ‘good’ health, to be out in public may lead to contact from the DWP: a felt mood of paranoia that they are, or could be, being spied on (Day, Shepperd & Shaw). For individuals living with chronic health conditions, conditions that they will always have, the need to be reassessed for health-related benefits creates a sense of insecurity that is present in their daily lives. Removing the need for reassessment, unless substantial changes are experienced in their health - or a broadening of the criteria for conditions that are exempt from reassessments - would have a huge impact on the mental health of ESA and PIP claimants.

Having applications for ESA or PIP initially rejected brought about feelings of hurt and anxiety for claimants (Day, Shepperd & Shaw). Participants interpreted receiving zero points” in assessments as a painful indication that their condition was thought to have no impact on their lives or ability to work. In some cases, rejections exacerbated health conditions. The demarcation that they were not legitimate or genuine claimants led to feelings of shame, embarrassment or stigmatisation. Unable to physically work but deemed unable to access welfare, claimants felt useless due to being unable to contribute financially to household living costs (Day, Shepperd & Shaw). Greater accuracy within initial assessments would increase the number of ‘successful’ claimants. In doing so, the number of rejected claimants, struggling with the affective impact until a successful tribunal, would also be reduced.  

Waits for assessments:

14. What could the Department to do to shorten waits for health-related benefit assessments—especially for ESA/UC?

A greater number of paper-based assessments, alongside a flexibility in how assessments take place (i.e., an increase in remote assessments) would likely shorten wait times for health-related benefit assessments.


Day, W., & Shaw, R. (2020). When benefit eligibility and patient-led care intersect. Living in the UK with chronic illness: Experiences of the work capability assessment. Journal of Health Psychology, 135910532095347. https://doi.org/10.1177/1359105320953476

Day, W., Shepperd, D., & Shaw, R. (Ongoing). Living with chronic health conditions and claiming welfare; a pluralistic exploration.

Todres L, Galvin K and Dahlberg K (2007) Lifeworld- led healthcare: Revisiting a humanising philosophy that integrates emerging trends. Medicine, Health Care and Philosophy 10(1): 53–63


December 2021