The Department for Work and Pensions (DWP) has disclosed that over 21,000 ill and disabled people died waiting for their Personal Independence Payment (PIP) assessment to be completed, between April 2013 and 30 April 2018. PIP is claimed by people with a range of health conditions and disabilities, many of which are chronic, degenerative or life limiting.

Sarah Newton, the Minister of State for Disabled People, published the figures on 11 January following a question raised in parliament by Labour MP Madeleine Moon in December: “How many people have died while waiting for their personal independence payment assessment to be completed; and what were the conditions those people died from?”

Newton responded: “All benefit claims can be made under the special rules for people who are terminally ill which will mean that they are fast tracked. These are currently being cleared within 6 working days for new claimants to PIP. The Department would encourage all claimants with a terminal illness to let the department know and to apply using the special rules.

The cause of death of PIP claimants is not collated centrally by the Department.”

Over 3.6 million applications to PIP were made between April 2013 and 30th April 2018. Of these:

• 4,760 claimants¹ died between their case being referred to, and returned from, an assessment provider;
• 73,800 claimants died within 6 months of their claim being registered; and
• 17,070 claimants died after registering but prior to the DWP making a decision on their claim. Details of the claimant’s primary medical condition, where recorded, are in the accompanying spreadsheet.”

The total number of PIP claimants who died was 95,000. But Newton’s response does not indicate at what stage of their claim the 73,800 people, who died within six months of it being registered, were at. Nor does it indicate what those people who did not have terminal or degenerative illnesses died of – including those with mental illness. For example, 270 of those mortalities are listed as having had anxiety and/or depressive disorders as their primary disorder.

Of those who did have terminal illnesses, we need to ask why these people were  cruelly left waiting so long for their assessment, if, as Newton claims, they are ‘fast tracked’ through the claim and assessment process.

Newton also warns on her data release: “This is unpublished data… It should be used with caution and it may be subject to future revision.”

There is, however, an Excel spreadsheet that indicates some of the primary conditions of those people who have died. But we cannot assume that those mortalities have arisen as a consequence of the recorded condition.

The DWP are experts at reluctantly providing data that lacks both context and details, which, they often say, they simply don’t collate. And 9,020 people’s main condition was not recorded at all by the DWP.  There is no means of useful comparison between mortality rates year by year, or a reference point to start from. A similar statistical analysis of Disability Living Allowance (DLA) claimant mortalities would help us establish a useful baseline. 

I rang the DWP press office on Friday for a response and to ask for details of DLA claimant pre-assessment mortality rates, and was promised an email that has not arrived. 

Personal experience

As someone who has undergone both Employment and Support Allowance (ESA) and PIP assessments, I know from personal experience they are dehumanising, and  the stress they create exacerbates the symptoms of chronic illness. I have lupus. 

Back in 2013, I wrote about the terrible impact of  stressful, continuous work capability assessments on disabled people, particularly those with chronic illness. It’s long been understood that distress exacerbates the symptoms of both physical and mental illness. In my case, the ESA assessments and subsequent Tribunal were so stressful that the process itself created a deterioration in my mental health at the time.

My physical symptoms worsened to the point where I became severely underweight at less than seven and a half stones. I was often left without enough money to buy food and keep warm. I also have Raynaud’s, which means I have to keep warm. My rheumatologist prescribed a chemotherapy – methotrexate – and other immune suppressants to halt the rapid acceleration in disease activity and to try and stop the subsequent wake of permanent widespread damage being done to my body. 

Those exacerbations were stress-related, and have left a wake of damage to my joints, nerves, tendons, organs and blood cells, and, together with the treatments, the severe illness flares have irrepairably damaged my immune system, leaving me even more susceptible to serious infections like pneumonia, abcesses, kidney infection and an abnormal immune response to those – sepsis.

I was very poorly when I claimed ESA, but was critically ill by the time I was forced to appeal the DWP’s decision that I was ‘fit for work’.  

A government that cared about monitoring the impact of its’ policies on vulnerable citizens would do a much better job of collating and recording information about mortalities, and would also present a context that permits us to make meaningful comparisons. Instead, we see the Conservatives micromanaging information with expedience, while claiming that there is “no causal link established” between policy and any increase in harm or mortality.

However, the government have no grounds for making that claim, since there has been a persistent refusal to carry out a cumulative impact assessment of the welfare reforms, or to open an inquiry regarding the many concerns raised and cases presented where people have suffered harm, distress and premature mortality, indicating a correlation with the government’s policy changes.

Although correlation isn’t the same thing as causality, it often implies causality. Without further investigation, we cannot say that there is or isn’t a causal relationship between punitive policies and distress, harm, premature mortality. But we can say there is an association evident. It’s worth bearing in mind that much social science research establishes correlations, not causality.

Government guidelines for PIP assessment: a political redefinition of the word ‘objective’

The Department for Work and Pensions have issued a guidance document for providers carrying out assessments for PIP. It can be found here: PIP Assessment Guide. From the document: “The HP should check the consistency of what is being said by using different approaches, asking questions in different ways or coming back to a previous point. When considering inconsistencies, HPs should bear in mind that some claimants may have no insight into their condition, for example claimants with cognitive or developmental impairments.”

This approach – “checking for inconsistencies” by using indirect questioning and assumption is NOT “objective”. It is a calculated strategy to justify a starting point of disbelief and skepticism regarding the accounts provided by ill and disabled people about the impact of their conditions and disabilities on their day-to-day living. As such, it frames the entire assessment process, weighting it towards evidence gathering to justify refusing awards, rather than being “objective”, as claimed.

It’s simply a method based on side-stepping and discounting people’s own accounts of their experiences of their disability, and any medical evidence submitted to verify that.

Prior to the introduction of PIP, Esther McVey stated that of the initial 560,000 claimants to be reassessed by October 2015, 330,000 of these are targeted to either lose their benefit altogether or see their payments reduced. Of course the ever-shrinking category of “those with the greatest need” simply reflects a government that has made a partisan political decision to cut disabled people’s essential income to fund a financial gift to the wealthiest citizens. There is no justification for this decision, nor is it remotely “fair”, as the government claims.

It becomes easier to disassociate from someone you view “objectively” and to distance yourself from the impact of your calculated and target-led decision-making, constrained within a highly political framework. Such an objectification of a person or group of people serves to de-empathise us, which is a key characteristic requirement of neoliberal ideology, embedded in inhumane “small state” policy and extended via administrative (and outsourced, privatised) practices. It leaves us much less likely to relate to the circumstances, emotions or accept the needs and choices of others.

Surely a considerable part of our experience of being objectively diagnosed as ill and/or disabled, in any case, is initiated by a person’s subjective experience of it, rather than categories and counts; quantifiable, reductive and speculative statements about how we may perform highly specific tasks.

Quantitative medical evidence is important, because it does often give a general indication of conditions that would entail loss of function. But considering medical evidence isn’t a central part of the assessment process. Whether or not we can perform certain tasks, and inferences drawn from that are the central considerations for PIP eligibility.

The tasks I was asked to perform at assessment were not related to those I carry out from day to day. Consequently, as they were unfamiliar, I had no idea what I could and couldn’t actually do. It was a shocking experience for me to learn how much mobility I have lost in my hands, wrists, shoulders and neck. It was also very painful attempting what looked like simple movements, which the assessor demonstrated as she conducted the examination. Because she moved quickly from one movement to another, I had no time to assess if I could do the activities. I was trembling because of the pain and effort, and couldn’t understand why I was struggling with what looked like basic movements. I left in a lot more pain than when I arrived. My shoulder and calf swelled inexplicably during the assessment and I couldn’t walk for over a week afterwards.

Many conditions “fluctuate” – they vary so much that it’s difficult to assess performance of specific tasks consistently. Many conditions become progressively worse at a varied pace, often leaving little scope for a person developing coping strategies and adapting their everyday lives to the changes as they happen, such as a progressive loss of mobility, cognitive impairment, mood changes, anxiety, depression, sleep disruption and other psychological impacts, and the increasing pain and fatigue that they may experience.   

If the process were genuinely “fair, accurate and objective” then there would be no need for mandatory reviews and scrutiny through the appeals process. The introduction of the mandatory review – another layer of bureaucracy and a barrier to justice, where the DWP decide whether their first decision should be changed – has deterred many from appealing wrong decisions.

Those making the decisions about PIP awards are: “trained DWP staff who are familiar with the legislation governing PIP, but who do not have a healthcare background. The HP enables CMs to make fair and accurate decisions by providing impartial, objective and justified advice.”

The PIP assessment is geared towards looking for “inconsistencies” in “functional limitations”. For example, if you say you can’t sit unaided for half an hour, but then say that you watch soaps on TV, it will be assumed you sit unaided for at least half an hour to watch TV, and that will be classed as a “discrepancy between the reported need and the actual needs of the claimant.”

The whole assessment process is set up and designed to look for “inconsistencies.” In other words, the assessor is looking for any excuse to justify a decision that you are not among those in “greatest need” for a PIP award. The entire process happens within a framework of reducing welfare costs, after all. This makes a mockery of the government’s fondness for using the words “objective” and “fair.”

What has become clear is this so-called support for those who are “in the greatest need” is not working for disabled and ill citizens. It most certainly does not help disabled people maintain their dignity and support them in independent living.

It is not such a big inferential leap to conclude that continually cutting essential lifeline support for ill and disabled people will ultimately lead to harm, distress, hardship and other negative consequences, and will, ultimately, have wider political, social, cultural and economic “adverse” consequences, too.

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For people who can’t translate the coded statement at the foot of the Excel Spreadsheet, it says:

These figures include claims made under both Normal Rules and Special Rules for the Terminally Ill and include new claims and Disability Living Allowance (DLA) to PIP reassessment claims. · This is unpublished data from the PIP computer system (PICS) management information. It should be used with caution and it may be subject to future revision. · Claimants may often have multiple disabling conditions upon which the decision is based but only the primary condition as recorded on the PIPCS. · Figures are rounded to the nearest 10 and ‘#’ is used for totals of greater than 0 but less than 5. · Components may not sum to totals due to rounding.

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