The Department for Work and Pensions (DWP) has come under serious fire for its ‘institutional failures’ [pdf, p3] against some of the sickest people it deals with. But a parliamentary question reveals a department completely out of touch with the reality of what it’s doing.
A revealing question to the DWP
On 27 June, Labour’s Lord Boateng asked the government, regarding the DWP:
what assessment they have made of the extent to which… disability assessors are qualified to make judgements in relation to people living with thalassaemia and sickle cell disease.
Sickle cell disorder is a genetic blood condition. As the charity the Sickle Cell Society describes, symptoms include:
anaemia and episodes of severe pain…
People with sickle cell are at risk of complications [like] stroke, acute chest syndrome, blindness, bone damage… damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder.
Thalassaemia is another group of genetic blood disorders, which mainly affects people with specific ethnic backgrounds. Its symptoms are similar, for example the complications caused by severe anaemia.
A telling answer
Both sickle cell disorder and thalassaemia are complex, serious conditions needing life-long care. Responding to Boateng’s question for the DWP, Baroness Buscombe said:
All Healthcare Professionals carrying out assessments are medically qualified and highly-trained practitioners in their own field…
The assessment is not a medical assessment… The focus is on ensuring Healthcare Professionals are experts in disability analysis with knowledge of the likely functional effects of a wide range of health conditions.
But the Sickle Cell Society, the UK Thalassaemia Society and a specific All Party Parliamentary Group (SCTAPPG) believe the DWP is failing people applying for Personal Independence Payments (PIP), a benefit designed to help people living with a disability. So, they produced a report to outline their concerns. It was damning.
Damning findings
The report [pdf] is called How Did You Contract That? to highlight that PIP assessors poorly understand these diseases. It paints a grave picture of the state of the DWP and the PIP process.
Overall, it found that:
- The PIP2 form claimants use to document their disability is “not fit-for-purpose”, leading to ‘unfair’ and ‘inconsistent’ outcomes [pdf, p3]. It also “discriminates”, ‘inadvertently penalising’ people [pdf, p10].
- People’s assessments are “fundamentally flawed” [pdf, p3]; not [pdf, p18] “allow[ing] them to adequately represent their condition”
- PIP assessors [pdf, p3] ‘lacked knowledge’ of the diseases. Their conduct ranges [pdf, p3] from “failing to accurately report proceedings to intimidating behaviour” and “bullying” [pdf, p15].
- The PIP process [pdf, p10] “neglect[s] to understand the consequences” of living “with a fluctuating condition”.
- Assessors often ‘inaccurately represented and portrayed’ the assessment [pdf, p19].
The report made numerous recommendations, but overall it concluded [pdf, p24]:
the current system is failing… The… state of play is avoidable and we strongly urge that the recommendations made are fully embraced so that those who deserve help are given it.
A staggering survey
A survey of people living with the diseases backed up the report. Of more than 16 questions asked to 110 people [pdf, p3], not one had a majority of positive answers. Most responses were negative about the PIP process; some questions even revealed that no one viewed parts of the process positively:
John James OBE, CEO of the Sickle Cell Society, told The Canary:
Based upon the results of our survey and the experience of sickle cell and thalassaemia patients… [we] believe that the current PIP assessment process is unfair, inconsistent and fundamentally flawed for people living with these conditions. The DWP need to do more, including assessing the current system and training assessors to gain a greater awareness of the conditions, to ensure that all future assessments will be fair.
The DWP: not fit-for-purpose
So, with the report showing [pdf, p3] that people face ‘endemic inequality’ via a ‘failing system’, how did the DWP respond?
Boateng also asked the government about the “suitability” of the PIP2 form, in light of the report. Buscombe said:
Although the PIP2 is a standard template… it has been carefully designed to capture information on people’s needs regardless of their health condition or disability.
This standard rhetoric, ignoring the lived experience of people dealing with the DWP, is endemic of the department’s approach. One that is filled with bureaucracy, disregard and blatant mistreatment of some of the sickest people in our society.
Read the full report:
Get Involved!
– Support the Sickle Cell Society and the UK Thalassaemia Society.
Featured image via UK government – Wikimedia
