She first noticed symptoms of MS in 2011 and took ill health retirement four years later, unable to cope with the pressure of being on her feet all day working in operating theatres.
Symptoms of MS include muscle stiffness and tightness which affects movement and eventually leaves sufferers unable to walk.
It also causes problems with vision, numbness, fatigue, dizziness and can trigger depression.
Since leaving her job Penny has tried to stay active in the community – but she relies on her car to get around.
“It’s getting worse,” she said. “I sent off information and they said I would have to go through another assessment.
“I’ll be virtually housebound. People with long-term conditions like myself are being overlooked.”
Penny has been receiving Disability Living Allowance (DLA) and the specially adapted car,
Personal Independence Payment (PIP) has been introduced by the DWP to replace DLA.
A spokesperson from the Department for Work and Pensions said: “Decisions for PIP are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist.
“Anyone that disagrees with a decision can appeal.”
He added “most people” leaving the Motability scheme are entitled to a one-off £2,000 payment to help them with alternative transport arrangements.
The disease, affecting around 12,000 UK children, is so severe in seven-year-old Hollie’s case, that it leaves her unable to move on mornings and requires chemotherapy drugs to treat it.
In November last year, Hollie’s JIA appeared to be in remission and in March this year all disability benefits, including carer’s allowance paid to Hollie’s mum, Andrea Keenan, were stopped.
But Andrea, 48, said that Hollie’s arthritis came back “with a vengeance” just before Christmas.
She said: “In November she appeared to be doing well so the doctors tried to wean her off her medication as it looked as though she was going into remission.
“But a week before Christmas, Hollie’s arthritis had come back, not only to all the joints in her body – knees, ankles, toes, fingers – it had sadly spread to her neck.”
Now, more six months later, Andrea – who works night shifts as a support worker to fit around looking after her daughter – still receives no help from the Government.
“The saddest thing is she can’t even get disability allowance,” said Andrea.
“Because she gets her medication in the hospital and, on good days like today, she can be up and about, they say she’s not eligible.
“But no two days are the same. Tomorrow she might be as stiff as a board.
“Some mornings she wakes up with stiffness in her joints so sore she can’t face the day ahead.
“It causes her high pain, fatigue, swelling and can cause an eye disease. She’s had the chemotherapy for the past two years.
“Hollie throughout her five-and-a-half year illness has had to endure countless theatre visits, and is under the children’s rheumatology team at the Newcastle RVI.” Hollie, a pupil at New Marske Primary, said: “Some days it’s in all my joints and everywhere really.
“It’s hard to move – but I’m not going to let it beat me.”
A DWP spokeswoman said: “Decisions on DLA for children like Hollie are made following consideration of all the information provided by the family and their GP or medical specialist.
“Anyone who disagrees with a decision can appeal, and any further evidence will be considered by the independent assessor.”
Hugging her daughter close, Andrea nominated Hollie as a Gazette Community Champion Child of Courage.
She said: “Despite her illness, Hollie was determined to climb Roseberry Topping to conquer ‘her dream’ which she did this summer.
“Sometimes I really have to sit back, look at this kid and say ‘how on earth does this child do it?’
“She gives me the strength to keep going. Her showing of love for everyone is unconditional.
“She is one truly inspiration little girl. I’m immensely proud.”
What is Juvenile Idiopathic Arthritis?
• JIA is inflammation of one or more of the joints
• It first occurs before the age of 16
• It is slightly more common in girls
• It most commonly occurs in pre-school age children or teenagers
• Most cases are controlled with treatment
• The symptoms are painful, swollen, stiff or warm-to-touch joints, increased tiredness, and returning fever
Almost half of the 15,000 epileptic people who claimed old-style disability benefits have had them axed altogether. Another 2,300 have had their benefit cut
Epileptic people’s lives are being put at risk after thousands were rejected for disability benefits, a charity has warned.
Shocking figures show almost half the 15,000 epileptic people who received the old-style disability benefit have had their support axed altogether under the new-style Personal Independence Payment (PIP). Another 2,300 have had their benefit cut.
Philip Lee, chief executive of Epilepsy Action, said the refusal rate was the highest of any condition.
He added: “Their physical and mental health are also being affected. Some people have even told us they feel suicidal.”
Louise Bolotin, 55, from Manchester, said she was made to feel like she had to “beg for every penny and prove I am not a scrounger” just to claim PIP.
She lost £307 a month overnight when she was reassessed as part of a transfer to the new benefit.
She said: “The assessment didn’t make any allowances for the risks I face in my day to day life. I could have a seizure at any time.”
When she had to appeal, she said: “I cried like a baby the whole day. It felt like the system had beaten me.”
A DWP spokeswoman said the old system was “outdated” and PIP “is a better benefit which takes a much wider look at the way an individual’s disability or health condition, such as epilepsy, impacts them on a daily basis.”
She added: “Under PIP 29% of claimants receive the highest rate of support compared to 15% under DLA.”
My husband had his PIP assessment last month and we covertly recorded it, because Capita are KNOWN LIARS and you have to protect yourself, I will type out a transcript of the “assessment” for any/ALL appeals. I advise that you NEVER go to a PIP/ESA assessment alone and get the assessment recorded [covertly or otherwise] – Govt Newspeak
By Jim ReedReporter, Victoria Derbyshire programme
Every month 60,000 ill and disabled people have their needs assessed for benefits. Some are so worried about the process that they are using mobile phones to secretly record those interviews, critics say. But using that evidence to overturn a decision is not straightforward.
In 2015, Nev Cartwright sat down with his specialist at a hospital in Leeds. He was told his hacking cough and breathing difficulties were caused by a tumour in his left lung. He was 45.
But a year later he received a letter saying the DLA was being replaced by a new benefit, the Personal Independence Payment, and his needs would have to be reassessed by a private company.
The night before his assessment he watched a documentary which questioned how they were being conducted.
“I was really nervous about it and made the decision to audio record the interview covertly. It was a safeguard, an accurate record of what had taken place,” he says.
The face-to-face assessment is typically an interview with a health professional, such as a nurse or paramedic, lasting between 30 and 90 minutes. It can also include basic medical tests and a physical examination.
The claimant is assessed depending on their ability to complete day-to-day tasks. That report is sent to an official at the DWP who will then decide the final level of disability benefit that person is awarded.
But things did not go as planned. Nev says he had misgivings from the start but it was only later, when he saw the assessor’s final report, that he realised something was seriously wrong.
“Some details discussed in the interview were not in the report and others were completely altered,” he says.
“She said she’d done a physical examination of my mobility. It was very evident on the audio recording, that she never did that at all.”
On his phone recording you can clearly hear the assessor carrying out a peak test to measure his lung function, and reading out the data.
But in the final report, his last reading appears to have doubled from 150 L/min to 300 L/min, making him seem better than he actually was.
“I totally agree that anyone entitled to benefits should have their needs assessed,” he says. “But everyone deserves just and fair treatment.”
After his interview Nev had his disability payments cut and had to return the car paid for by the mobility element of his benefits.
He wrote to the DWP and told them about his recording, sending them a written transcript put together by an independent firm.
Under government rules, secret or covert recording like this is banned. If it is spotted, the claimant is told to stop. If they refuse it is likely that their benefit application will be rejected.
The government tried to get his recording thrown out before his appeal at tribunal.
But exceptionally, in his case the judge agreed a transcript could be entered into evidence. He went on to win his case and his car was eventually returned.
“I’ve wasted 12 months of my life in an unfair fight with a government department and the people who work for it,” he said.
The private company which carried out his assessment says its “high standards were not met on this occasion” and it has now changed the way it gathers evidence in cases like this.
Critics of the assessment process say formal audio recording of all PIP interviews should be mandatory and available to both sides.
“It would remove the distrust and give so much transparency to everyone,” said Tony Lea, lead welfare rights officer at Benefit Resolutions, a disability advocacy service which has been campaigning for a rule change.
As things stand the official rules are complex.
A claimant does have the right to ask for a PIP interview to be formally taped and used as evidence, but unlike other disability benefits like ESA, they have to provide their own equipment.
This must be a secure, tamper-proof double recorder which can cost as much as £1,500. A mobile phone, digital recorder or dictaphone does not meet the requirements.
In March, a major independent review of the PIP system commissioned by the government recommended switching to compulsory audio recordings with an opt-out for people who do not want it.
The government says it is “considering the results” of a pilot of recording in the West Midlands.
A spokesman for the DWP said: “Anyone is free to record their face-to-face consultation, but it must be done in a way that best protects both claimants and assessors.”
Nev says his experience shows that some vulnerable people need more protection.
“I should probably be more diplomatic but I think the whole system is a mess,” he adds.
“The importance for me of getting that audio recording into evidence was the potential to help other people in the future.”
Watch the Victoria Derbyshire programme on weekdays between 09:00 and 11:00 on BBC Two and the BBC News channel.
Pensioner who dedicated her life to caring for her disabled son talks about the heartbreak of losing their benefits
Eighty-year-old Eileen Knight has dedicated her entire life to looking after her severely disabled son Trevor.
Now 53, Trevor has had severe learning difficulties since birth. He is unable to read or write, and has a number of physical health issues related to his condition.
He lives at home with Eileen in Wigan and she washes him, dresses him and helps him with day-to-day activities, devoting herself to him totally.
Unsurprisingly, the pair rely on benefits to support them as neither are able to work.
Eileen had to battle tooth and nail to against the benefits system to have her son’s needs recognised, taking the case to a tribunal so she could argue it out in person.
Now the determined pensioner has spoken of her nightmare and praised Citizens Advice Manchester for being in her corner.
The legal advice service says that the family’s case is just the tip of the iceberg, after surveying clients and finding 85 per cent of people living with a disability or long-term health condition had their health affected by the stress of being reassessed for benefits, describing the process as ‘cruel’.
PIP replaced Disability Living Allowance (DLA) in 2013, meaning that anyone claiming has to be reassessed before next year, and new eligibility standards mean a quarter of DLA recipients are expected to not qualify for PIP.
In other words, thousands of the most vulnerable people in society will lose the little income they rely on.
Trevor, who has never been able to work, claimed DLA and Eileen also claimed a Carers Allowance for looking after him.
But despite his obvious disabilities he scored 0 points on the daily living and mobility tests for PIP, and a person needs to score eight to qualify for the standard rate of benefit.
Eileen said: “It was heartbreaking. I couldn’t believe it when I heard Trevor had scored no points. How they could even think he is able to look after himself I’ll never know. He is so reliant on me for everything.
“I’m 80 years old. How was I supposed to support us?
“The tests were so cruel. I felt like the assessor was being very aggressive with us. It was not a fair process and it was very hard to explain that Trevor was not able to do a lot of things.”
Stripped of their only income, Eileen turned to Citizens Advice for help, and they appealed Trevor’s case at a tribunal. It found in his favour and they had their benefits reinstated, as well as more than £3,500 in backdated payments.
Eileen added: “The team at Citizens Advice were amazing. They made sure we got the payment back. I don’t know what we would have done without them.”
But despite winning the case, life remains a struggle for Eileen and Trevor and many others who are dealing with complex care needs into adult life.
Almost 60 per cent of those surveyed by Citizens Advice had either lost or seen a reduction in the care part of their benefits since being assessed for PIP, and almost 70 per cent lost or saw a reduction in the mobility part.
More than half of those who had lost benefit payments were planning to cut back on heating, and more than a third expected to get into debt. People also said they found the reassessments embarrassing, complicated, and stressful.
Citizens Advice is calling for a shake-up of the assessment process to make it easier to understand, speed up decision-making and scrap reassessments for people with long-term conditions that are not going to improve.
It is also asking for financial penalties for assessors such as Capita and ATOS for each case overturned at appeal.
Meanwhile Citizens Advice Stockport is reporting a rise of 103 per cent in the number of clients it helped with a PIP problem in the last year compared to the year before.
They say that ‘flaws in the system can result in some people being wrongly assessed’ and that common problems include confusion over what evidence to submit in advance, being rushed for time during the assessment, and the wrong information being recorded by assessors.
Alison Haynes, chair of the Citizens Advice Greater Manchester strategic board, said: “It is extraordinary that a benefit intended specifically for people with long-term health problems should be so inappropriately designed that is causes further damage to their health and wellbeing.
“It is deeply worrying that, for these clients, both the outcomes of the reassessment and their experience of the process had led to damaging impacts on their health, and sometimes on the health and wellbeing of other family members as well.”
A spokesperson for the Department for Work and Pensions said: “Under PIP 29 per cent of people are now receiving the highest rate of support compared to 15pc under DLA, and there are now more people on the Motability Scheme than before PIP was introduced.
“PIP looks at the way an individual’s health condition or disability impacts them on a daily basis and decisions are made following consideration of all the evidence available. In the vast majority of successful appeals, decisions are overturned because the claimant provides new evidence to support their claim which they initially did not provide.”
For more information call the CAB advice line on 03444 111222.
Was the DWP which last week overturned its decision that Hazel was fit to work being too hasty?
You may well have read last week how Hazel Macrae from Walker, Newcastle, who has been blind since birth, suffers from epilepsy, Type 2 Diabetes and osteoarthritis and is housebound was deemed fit to work by the Department for Work and Pensions.
However, after further thought, perhaps Hazel is fit to work because I can think of at least one job she can do just as well as the person in the post right now – the one who decided she was fit to work in the first place.
Ideally everyone who can work should work. However sometimes they really, really can’t no matter what targets – or cuts – are set.
It’s all made worse by the fact that while the public purse strings are being tightened for the needy and vulnerable, they’re being loosened for the wealthy.
For example last week it was revealed the Government was still interested in finding a titanic £100m to build a new Royal yacht.
Pro-Brexit politicians believe commissioning the boat, a “floating palace” for the Queen, could also help showcase the “best in Britain” and secure trade deals after the UK leaves the EU.
There is talk of it being privately funded but with grand schemes like this the public purse often has to be opened to get them over the line.
Let’s not forget the Queen is one of the UK’s richest people and her wealth is contributed to by the benefits she gets from the state.
However what she receives isn’t generally viewed as a ‘state hand out’ as it goes under the quaint name of the Sovereign Grant. There is no doubt what mere mortals like Hazel get is a hand out as it comes under the more prosaic sounding title Employment Support Allowance.
Which brings me to Universal Credit. A lot of people are saying it could be a good change – in theory. The problem is putting it into practice.
Basically it’s rolling six existing benefits for low income families into one monthly payment making everything simpler.
Maybe it’s just me but the problems that have hurt people most – the immediate stopping of the previous benefits payment and a six week wait (in some cases longer) for the first Universal Credit payment – saves a lot of cash for the Government.
In simple terms, six weeks of payment is not paid. Multiply that by all those affected and you’re talking a sizeable sum.
While there is emergency funding available this has to be repaid from the money people eventually get. Doesn’t this in effect leave in perpetuity a six week black hole in finances?
And let’s not forget the Universal Credit helpline that costs up to 55p a minute to call which is just so wrong you can imagine the person who dreamed it up cackling like the Wicked Witch of the West from the Wizard of Oz at the thought of it.
Disabled activists who carried out a direct action protest in the heart of parliament have been shortlisted for a prestigious human rights award.
The human rights organisation Liberty has named Disabled People Against Cuts (DPAC) as one of just three nominees for its new Courageous Voices award, which recognises activists who have taken “bold action to stand up to those in power”.
DPAC has been shortlisted for July’s Summer Of Discontent week of action, which included a protest about cuts to social care in parliament’s central lobby (pictured).
Linda Burnip, co-founder of DPAC, said she hoped the awards would be “another opportunity to reach people who we do not normally reach”, and might raise DPAC’s profile with MPs.
She said: “Our direct actions are designed to make sure that disabled people do have a voice and aren’t ignored.”
She said parliament was “where decisions about our lives are made so it seemed the most sensible place to take our complaints, and obviously we plan to keep doing it”.
The protest took place near the main Commons chamber, as Theresa May was taking part in prime minister’s questions, and saw police officers barring the path of activists – including several affected by the government’s decision to close the Independent Living Fund – to prevent them approaching the Commons chamber.
The protest was supported by Labour leader Jeremy Corbyn, shadow chancellor John McDonnell and Green party co-leaders Caroline Lucas and Jonathan Bartley.
It led to McDonnell calling for disabled people to be given the job of designing the solution to the social care funding crisis.
He told Disability News Service as the protest was taking place that it was “exactly what people have the right to do, to demonstrate, to make sure MPs are aware what they are experiencing, what disabled people are experiencing”.
And he said the direct action was “perfectly justifiable in the light of what is happening, with people’s suffering as a result of austerity”.
Courageous Voices is one of several awards that will be presented at Liberty’s 2017 Human Rights Awards on 24 October at London’s Royal Court Theatre.
Martha Spurrier, director of Liberty, said: “Disabled People Against Cuts embody the spirit of the Courageous Voices award and, as their Summer of Discontent campaign shows, their work is needed now more than ever.
“Equality and human rights for disabled people aren’t a commodity that [can]be rationed or reduced as a money-saving exercise.
“DPAC have been fearless and creative in getting that message across – standing up to those in power, challenging injustice and getting their voices heard.”