Margaret McCartney: Who’s measuring the harm caused by the new benefits system?

The Disability Living Allowance benefit started to become Personal Independence Payments (PIPs) in 2013. These payments, which are not means tested, go to people with long term disabilities who need help to cook, eat, travel, wash, or dress, for example.

The UK government’s stated aim was to reassess each person receiving Disability Living Allowance to reduce “caseload and expenditure” by 20%.1 After a “spending to save” philosophy the government gave two private companies, Atos and Capita, contracts worth about £500m2 and £140m3 to administer the assessments and, supposedly, to save us £3bn. The rationale was a need for objective functional assessments and continual reassessment.

Many in the media have focused on “benefit cheats.” Anxiety is a common, unintended outcome of health and social care policies that is rarely taken seriously enough, let alone measured. The benefits system should be fair, of course, but criminals are rare. The uncertainty of the new PIP thresholds has created much fear, and my repeated observation is that guilt, embarrassment, and a sense of being made to “beg” all surround the copious form filling required when applying.

Backlogs in carrying out assessments have led to months of worried sleeplessness that have gone largely uncounted. The Public Accounts Committee described the system as “nothing short of a fiasco,” one creating stress and distress4—but evidence of harms is not being systematically collected.

It is ethical to want to ensure that people with chronic conditions can participate in society. But it is self interest, too: firstly, because we, or people we care about, may become disabled; and, secondly, because a fairer society is better for us all.5

The first independent review of PIPs focused on problems with administration of the assessments6 rather than their effect on people, families, or the NHS, which is called on to help with delays and uncertainties in the system.

We should answer the basic questions first, because social care is fundamentally healthcare. Where was the evidence that we could safely and humanely reduce our social welfare spending without causing harm? How do we know that this new system works well enough?

Recent data show that £1.2bn—that is, 0.7% of the total—is lost to benefit fraud. However, £1.5bn of benefits are underpaid, meaning a net shortfall in claims.7 Changing the means by which benefits are made should surely work on a safety first principle. The confusing and slow claims system seems designed to exclude people, and it is often left to charities to help people access the funds that they are allowed. Is this the kind of care that chronically ill and disabled people deserve?