The wait for disability benefit and the impact of being declined: Tales from the London foodbank and beyond

The existence of  a massive  waiting list for decisions on Personal Independence Payments (PIP) and accounts of long waits faced by individuals is becoming better known. The Department for Work and Pensions (DWP) says this social security payment is designed to ‘help with some of the extra costs caused by long-term ill-health or a disability’ for those aged between 16 and 64. According to DWP figures, of the 529,400 cases registered for PIP between April 2013 and the end of July this year,  just over 206,000 have been cleared (awarded, declined or withdrawn).

Yesterday in the House of Commons Mark Harper the current Minster of State for Disabled People said that by the end of the year no-one would be waiting for longer than 16 weeks for a PIP decision.

How deliverable is this, given the scale of the fiasco?

Statistics capture one aspect of  the saga, of course. But they do not show how long people are waiting within this 16 month period. Mark Harper has said: ‘The delays faced by some people are unacceptable and we are committed to putting that right’. According to an article in the Guardian here, the figures show that 51 per cent of new claimants had been awarded PIP, and it had been granted in 72 per cent of reassessment cases to people previously in receipt of Disability Living Allowance (the benefit that has been replaced by PIP for all new claimants).

But what about the day-to-day lives and feelings of the people caught up in this catastrophe, many of whom have been waiting eight months and longer for that life-changing letter to drop through the post? Also, what happens when that long-awaited decision turns out to be a ‘no’?

One of the worst cases – reported on the Same Difference blog and elsewhere –  involved Lyn Ward, who applied for PIP after she was diagnosed with breast cancer. In March this year she was still waiting for help  – 11 months after applying for this help and having undergone an operation to remove the tumour, her lymph nodes, a mastectomy, chemotherapy and radiotherapy. While PIP itself is not a means-tested benefit, finances were so tight that the delay forced Lyn to go back to work just days after completing her radiotherapy.

It’s worth stating the unavoidably obvious fact that people who apply for PIP are some of the poorest people in society – those with long-term ill-health and disabilities that more often than not impact on their ability to work. The ill-health can be physical, mental or a combination of both. Richard Hawkes, the chief executive of disability charity Scope, is quoted in the Guardian article saying that ‘Scope’s helpline has been inundated with disabled people phoning for advice on their PIP claim, and many are facing extreme delays of well over six months’.

Recently at this London food bank, I spoke to Theresa (not her real name),  who has recently been diagnosed with borderline personality disorder (BPD), which can make people at risk of self harm and suicidal behaviour. Theresa, a single person,  told me that her experiences while on Workfare – working for no pay while in receipt of jobseeker’s allowance (JSA) – had driven her to take an overdose. Now on the waiting list for specialist counselling, she has just filled in the forms to apply for PIP. But she has no idea at this stage how long it will be before she hears if her application has been successful. Even if it is successful she has no idea how much she’s likely to receive. Applicants could get between £21.55 and £138.05 a week, depending on how their health needs have been assessed – ie how many points they accrue. If she’s turned down for the payment she faces the decision of whether to go down the route of a mandatory reconsideration and if that’s not successful then an appeal to an independent panel. This would  – and again it merits hammering home  –  be particularly stressful in her circumstances.

I’ll be keeping in touch with Theresa to find the outcome of the decision and to keep track of how long it takes to come through. In the meantime, she is trying to survive and pay all bills including rent on her employment and support allowance (ESA) payment of £140.80 a fortnight – a challenge that has driven her to ask for support from the food bank.

Amy (not her real name) is 29 and lives in Sheffield. She’s had an extended wait for a decision on a PIP application. Her circumstances are slightly different to Theresa’s – but she like Theresa is struggling daily with the impact of  serious mental health issues. She lives with her 35-year-old partner in a rented flat, and her mental health issues include, but are not limited to, anxiety, agoraphobia and hearing voices. She has previously had to spend time in hospital. Amy’s partner had been a full-time student, but ended up working during the day and staying up all night to finish his dissertation. Her partner currently earns £16,000 a  year, and they both depend on his income. He is hoping that his contract-based job is extended from this December. Their rent of £440 a month is paid to a private landlord. She says their situation, though hard, would be worse if they lived somewhere like London where private rents are much higher. The couple, who have no children, receive no benefits. I’ve suggested she and her partner immediately get some advice on whether he can apply for Working Tax Credit – worth up to £1,940 a year –  based on the level of  his income. A useful benefits calculator is here.

She applied for PIP in March, and she was helped to do this by her mental health home treatment team, whom she says give her good support. She also has a social worker. She supplied medical evidence, including a report from her psychiatrist. There was an eight month wait, then the decision came two weeks ago – her application was turned down. Her mental health team had thought that she might only get the lowest rate of just over £20 a week – but even that lowest level of PIP would have covered her food bill of £15 to £20  for the week. Amy eats a vegan diet and is skilled at making a little bit of food go a long way. Her partner has a lot of food allergies, so she uses a lot of tinned vegetables and cooks from fresh when she feels able enough to do that. They couldn’t afford ready meals, even if he was able to eat them.

But the decision to reject her application was devastating. She says that if she’d got the money – and particularly if it had been backdated – she could have used it to pay for the tiny extras for herself or someone else that might make the occasional difference between existing and living. Not that she goes out much, being agoraphobic. But the extra bit of cash might have paid for the odd trip to swim at the local leisure centre – which she used to find relaxing. It might also pay for a birthday present or a card for someone. She likes cooking and said a few extra pounds a week might also give her the chance to risk trying out one or two different things. She can’t risk experimenting when she cooks at the moment, because when you’re on the sort of budget she’s on, you can’t afford even one mistake.

Before she got ill, Amy worked as a cleaner. She had been able to put aside some savings during that time, but by the start of this year that money had run out. ‘I thought – I don’t want to be a burden. I think it precipitated me into being very unwell, which is why mental health services helped me apply for PIP. They recognised that the financial worries were making me more unwell. I think they (the DWP) do want to put people off applying by making people wait too long.’

I asked her if she’s going to request a mandatory reconsideration of the decision, which would potentially lead her to an independent panel appeal. But she says that she won’t do this. ‘Most claims go to appeal and I can’t face the stress of  it being turned down. My partner says he’d rather we scraped through than for me to get ill again. I feel the risk wouldn’t be worth it. I know that I do very badly under stress. The worry about going back to hospital outweighs any benefit that money would bring.’

She added: ‘The system can make you more unwell. What they try to save by not giving me £20 a week makes me ill and anxious. They are not saving any money overall. Social care costs more than benefits would cost.’