Life in the PIP queue: Man struggles without PIP as he waits for transplant

A seriously-ill man on a waiting-list for a liver transplant has told how he is struggling to survive because of the lengthy delays in assessments for the government’s new disability benefit.

His case is one of two reported on this week by Disability News Service (DNS), to illustrate how the lengthy delays with the implementation of personal independence payment (PIP) are having an often catastrophic impact on disabled people’s lives.

Richard Howell has been on a liver transplant waiting-list since 30 August last year, and has been waiting more than six months for a face-to-face assessment for PIP, which is gradually replacing working-age disability living allowance.

Because of the PIP delays, Howell, who shares parental responsibility for his nine-year-old daughter, is surviving on about £110 a week employment and support allowance (he is in the support group, for those not expected to carry out any work-related activity).

He has two rare blood disorders, has been receiving blood transfusions since 2010, and his spleen is six-and-a-half times the size it should be. He was admitted to hospital six or seven times last year.

This means that he cannot afford the high-quality foods, fish and fresh vegetables that he should be eating, and can no longer afford to buy himself new clothes.

Because he does not receive PIP, he cannot afford the expensive, high-energy, ready-prepared meals that could be delivered to his door.

His utility bills are now starting to stack up, and he also has to make sure he has a mobile phone that is always switched on in case he gets a call from the hospital transplant team.

Howell said he failed to understand why he needed a face-to-face assessment when the PIP claim form was filled out by his hospital liver specialist social worker.

He said: “They have access to hospital and all my records. Everybody knows that if you need an organ transplant you are obviously not well. I don’t need the stress of it all.”

He said he would not have been able to cope financially without loans and other support from his sister.

He said: “If it wasn’t for the fact that I have a good support network around me, I would have starved. My financial situation is awful.

“If I had PIP, it would alleviate all of my problems. This money is supposed to be here to help me through this period of my life.”

Howell, from Wallington, in the south London borough of Sutton, said: “To go anywhere, I have to get a taxi because I feel constantly tired and nauseous. I have been told to avoid public transport because of my immune system being compromised.”

He added: “I can’t sleep because of the pain from my spleen.

“There is nowhere to turn. I think it is horrendous. I just feel let down, I feel really let down, disappointed, shocked.

“I follow the news and I know they have stopped benefits for people in wheelchairs and people with learning difficulties so I know I am not the only one.

“But it is only when you are in that situation that you really appreciate the gravity of it and how it does affect people’s lives.

“I think the government have put PIP into a third party’s hands [Atos Healthcare and Capita], therefore shrugging off any responsibility.”

Dame Anne Begg, the disabled Labour MP and chair of the Commons work and pensions select committee, said the cases raised by DNS “illustrate some of the real problems being faced by people who have applied for the new PIP”.

She said: “There are very, very long delays in getting a determination and a six-month wait is not unusual.

“Claimants, and their MPs, are finding it difficult to find out any information at all about the stage of their claim, often being bounced between the DWP [Department for Work and Pensions] and either Atos or Capita [the other private sector provider of assessments].

“While payments will be back-dated if a claim is successful, this doesn’t take into account the real hardship being faced by families who are waiting and who need the money now to pay for the extra costs they are facing as a result of disability.”

Atos said it did not comment on individual cases, but a spokeswoman said the company was taking “immediate action” to reduce delays.

She said: “We are working to extend our network of healthcare partners and we are directly recruiting more staff, both health professionals and administration, to increase capacity.

“In the meantime, we are looking at ways in which we can keep our customers better informed, including direct letters and more information on our website.”

The DWP said it would not comment on an individual case, but a spokeswoman said: “In some cases the end-to-end claims process for PIP is taking longer than expected.

“PIP includes a new face-to-face assessment – to ensure support is targeted at those who need it the most – so there is an additional element to the process that was missing from the old system. All payments are backdated so no claimants are left out of pocket.”

 14 March 2014