People battling a brain tumour, cancer and a rare lung condition have been forced to live for months without benefits they are entitled to – as a Government department drags its feet carrying out assessments. Reporter Natalie Leal learns the stories of some of society’s most vulnerable residents, who are financially relying on friends and neighbours – including one man being evicted from his home.
Terminally ill and disabled people in Brighton and Hove are being left without benefits for months while they wait for an assessment.
A report by Big Lottery funded project, Advice Brighton and Hove, has revealed major delays for disabled people applying for Personal Independence Payments (PIP) – branding the backlog “untenable”.
The research was carried out after several frontline advice workers across the city raised concerns about exceptionally long waiting times for PIP assessments, causing vulnerable people unnecessary distress.
Author of the report, Tess Craven, said: “There is concern in the advice sector that as people applying for PIP are some of the most vulnerable and are being left without adequate finances, this is having a huge impact on their physical and emotional wellbeing.”
Advice Brighton and Hove gathered information, case studies and statistics from seven not-for-profit organisations, The Citizen’s Advice Bureau, Money Advice and Community Support, Age UK Brighton and Hove, Macmillan, Brighton Unemployed Centre. Families Project, The Federation for Disabled People and the Welfare Rights team at Brighton and Hove City Council.
From 60 example cases Advice Brighton and Hove found that just three people who had applied for the new benefit had received an assessment since its introduction in April 2013.
Extra costs PIPs were brought in to replace Disability Living Allowance (DLA). The benefit, for people aged 16 to 64 with a long-term health condition or impairment, helps with some of the extra costs caused by their disability or ill health.
The Department for Work and Pensions (DWP) plans to fully replace DLA with PIP by 2015. Atos Healthcare carries out the assessments on behalf of the Government.
Julie Burrows, an advisor at The Federation for Disabled People, said: “The Disability Advice Centre has helped nearly 50 disabled people apply for PIP since April last year.
“Of these, only two have had an assessment to date and the others are still waiting. We have one client who applied for PIP last July and is still waiting for an assessment.”
One person who has waited months for a PIP assessment is Jane Slee.
The former art lecturer applied for the benefit in September 2013 after the sudden death of her long-term partner.
The 63-year-old said: “I have never claimed any benefits before. My partner died suddenly in August last year.
“Because of my health problems he used to do everything for me, so I didn’t realise how ill I was.”
Ms Slee, who suffers from rheumatoid arthritis and a rare lung condition, said: “I can’t do everyday things for myself. The local newsagent is the furthest I can walk and that’s 50 yards.
“Often I need to sit on the bench and rest even when I walk there because I get out of breath.”
She applied for the PIP so she could employ someone to help with cleaning and homecare, so she can stay in the home she shared with her partner for 20 years.
Ms Slee is currently relying on friends and neighbours for help.
She said: “I can’t keep relying on people to drive me around and help me. I can’t do any cleaning, if I hoover I may pass out.
“Because I am on my own now I am terribly frightened of falling.
“I carry my mobile phone around with me all the time when I’m at home and I don’t use the bath because I’m scared of falling.”
After her health deteriorated in October last year Ms Slee spent two weeks in hospital. She is concerned gathering dust in her house, which she struggles to clean, is worsening her lung condition.
Since making the application in September Ms Slee had no contact from the DWP or Atos.
Each time she has called she has been told by someone will contact her within two weeks to arrange an assessment. Each time she has heard nothing and she is still waiting for an assessment date to be set.
She said: “You feel apologetic when you keep phoning. But in fact it’s a right to have this.
“I’ve worked all my life, I was a high earner and I have paid a lot of income tax.”
Frustrated by the lack of progress, Ms Slee asked for a home assessment hoping this would be quicker. However she was told a home assessment would take even longer to arrange.
Ms Slee recently contacted her MP Simon Kirby who wrote to the DWP and Atos on her behalf.
She said: “I’ve been waiting nearly five months for them to get in touch with me. Once they send me for an assessment it could be another three months before I get anything.”
She added: “I feel angry. If I wasn’t sure I’d get it backdated I’d be screaming.
“Once I get the payment I can get someone in to scrub the place from top to bottom.”
The DWP states assessments should be completed within 30 working days in 97% of cases with on average no case taking longer than 40 working days.
But the study by Advice Brighton and Hove found 91% of people have been waiting more than one month for an assessment date, with 33% of people waiting between five and seven months.
Eva Knebloth, 56, from Southwater Close, Brighton has also waited months for her PIP assessment.
Application Suffering with a brain tumour and unable to walk very far or carry heavy bags, she applied for PIP to enable her to get help with everyday tasks like shopping.
Ms Knebloth sent her application form at the beginning of October 2013.
She said: “I didn’t hear anything at all from Atos or the DWP. No letter, no phone call, nothing.”
After months with no contact and following advice from the Federation for Disabled People she also got in touch with her MP Simon Kirby who wrote to Atos and the DWP on her behalf three times before an assessment date and location were finally set.
At her appointment this week Ms Knebloth said she was told she was lucky to get an assessment after four months because most take six months to arrange. She is due to hear the outcome in four weeks.
She said: “If people apply for this payment they are in need at the beginning. The money can help them improve and get better.”
Ms Knebloth relied on her savings and Employment and Support Allowance while she waited for her PIP assessment.
Many people waiting for their assessments are now facing serious financial difficulties as a result of the delays.
The Advice Brighton and Hove report found said many sick and disabled people going through “awful experiences” waiting for their claims to be processed.
One of the 60 example cases was a man suffering with agoraphobia and severe anxiety who has been waiting since July 2013 for his PIP assessment. He is now facing eviction from his flat because he is has fallen behind with his rent payments.
Many front line workers are concerned about the emotional impact the delays are having. Ms Burrows, from The Federation for Disabled People, said: “These delays are causing unnecessary distress to the most vulnerable in our society.”
The report also highlighted the case of a 56-year-old wheelchair dependent man who has been left housebound while he waits for his assessment by Atos.
The man was left with serious mobility difficulties after suffering from cancer in his spine. He spent a year in hospital and applied for PIP when he returned home to live with his mother in September 2013.
Since making his application he has had no information from Atos and is still waiting for an assessment date to be set.
He has been left financially dependent on his mother, who also suffers from her own physical and mobility difficulties as well as depression.
The report said his financial situation has resulted in him being excluded from the wider community, as he cannot afford to pay for a specially-adapted taxi to get out of the house, which is having an increasingly negative effect on his mental health.
In another case, a 32-year-old married father of two had to stop working after being diagnosed with advanced bowel cancer and undergoing chemotherapy.
He and his family suffered serious financial hardship while waiting almost three months for their PIP assessment to be arranged.
During this time the man was vomiting day and night and suffering serious side effects from the chemotherapy.
He and his wife found the PIP delay very stressful and said they felt they were labelled as scroungers and benefit cheats during the process.
The report said the advice sector in Brighton and Hove now feels the situation is “untenable” and urged the DWP and Atos to address the backlog of claims and reduce waiting time significantly.
A DWP spokesperson said: “PIP is a completely new benefit with a new face-to-face assessment and regular reviews.
“In some cases this end-to-end claims process is taking longer than the old system of Disability Living Allowance, which relied on a self-assessment form.
“We are working with providers to ensure that all the steps in the process are as smooth as they can be, and the benefit is back-dated so no one is left out of pocket.”
MPs met last week to discuss the cumulative impact of the government’s welfare reforms on sick and disabled people.
Debate The parliamentary debate was triggered after a petition organised by disability campaign group, War on Welfare (WOW), gathered more than 100,000 signatures.
Simon Kirby, Member of Parliament for Brighton Kemptown and Peacehaven, said he welcomed the debate and would listen very carefully to all the points made.
Mr Kirby said: “I am always keen to assist my constituents and I have taken up cases on behalf of residents who have experienced delays in claiming PIP payments.
“Where there are delays and problems I will continue to represent my constituents.”
It is not known the total number of people affected by the PIP assessment delays. The report warned the 60 cases investigated by Advice Brighton and Hove only represent a small number of people applying for PIP across the city.
Advice Brighton and Hove asked the DWP to provide statistics showing the total number of residents who have applied for the benefit but their request was denied.