In the four years since the abolition of Disability Living Allowance (DLA) was first proposed by the Government, I have heard a cacophony of concern from people living with HIV, HIV doctors and HIV support organisations.

Anxiety has only become louder since the April 2013 roll-out of Personal Independence Payment (PIP), which has replaced DLA as the new extra-costs disability benefit for people who need extra support with daily tasks or with getting around.  PIP is a very different benefit, and it is not yet clear whether it will meet the complex needs of people living with HIV.

Close to 10% of people currently accessing HIV care in the UK rely on DLA to help pay the additional costs associated with living with a disability.  Their DLA may help them pay for taxis to attend clinic or peer support when there isn’t accessible public transport, to keep the heating on in winter, to help pay for someone to help them out in the house, or to buy the nutritious food they need to ensure they get the full benefit from their HIV treatment.

From October 2015 onwards, all of these long-term DLA claimants will need to be reassessed for PIP, with no guarantee that they will be found eligible under the new criteria.  The Department for Work and Pensions (DWP) calls this ‘managed re-assessment’.

Are the fears grounded?  What do we know about how PIP is working for new claimants?

Last week, the DWP published the findings of the first Independent Review of the PIP assessment, which aimed to answer these questions.  Despite the efforts of the Independent Reviewer, Paul Gray, to address important issues such as ”fairness and consistency of PIP award outcomes”, I don’t feel that we yet have the answers we need to go ahead with confidence on managed reassessments next year.

Even before Paul Gray’s call for evidence went out, it was clear that the findings of the Independent Review would be constrained by the operational reality of PIP so far– that is, the ongoing, diabolical delays in decision-making for people who have applied for the new benefit.  I have heard from people living with HIV who have waited a year from the start of their claim to getting a decision – and this has not been uncommon for PIP claimants across the board.  In February, the National Audit Office (NAO) released a damning assessment of the early PIP roll-out, saying that DWP “did not allow enough time to test whether the assessment process could handle large numbers of claims”. 

While it appears that the backlog is clearing and that new claims are moving more quickly, official statistics released on the day of the independent review launch showed that still only 60% of new PIP claims lodged since April 2013 had been decided.

Unfortunately, the impact of these delays has overshadowed the other important issues covered by the Gray review. The review includes sound recommendations about improving the experience of PIP for claimants.  But with nearly 250,000 people still waiting for their new PIP claim to be decided, we are not yet in a position to draw confident conclusions about how the actual assessment is working (or not).  NAT has had from the start major concerns about the PIP criteria, but we don’t yet have enough examples of how they are working for people living with HIV.

Even if the DWP took action on all the of Paul Gray’s recommendations prior to the October 2015 roll-out, we would still not be ready for PIP.  It is frankly foolhardy for the DWP to push ahead with the managed reassessment timetable thereby exposing long-term DLA claimants to the stress and uncertainty experienced by early PIP claimants.  There must be a delay in this further PIP roll-out, until the delays have been fully cleared and decisions are being made within the originally agreed timeframes.