Having multiple sclerosis is hard enough – we need a welfare system that believes its users

I was diagnosed with multiple sclerosis (MS) in 2014. The condition affects almost all aspects of my life. I have difficulties with my balance, vision and memory. I can no longer do all of the things I used to be able to; what I can still do has to be done more slowly and with more planning involved.

Shortly after receiving my diagnosis, I applied to the Department for Work and Pensions (DWP) for Personal Independence Payment (PIP) and was devastated to learn I didn’t qualify. The assessor had obviously not read my medical reports or any of the supporting documents I had sent, as she wasn’t even aware that I have MS.

When I saw my report, I was shocked to see I’d been marked down for being able to shake the assessor’s hand and for carrying a handbag! I asked the DWP to look again at this decision, but they maintained I wasn’t eligible for PIP. So I kept fighting and submitted an appeal. In September 2015 a tribunal panel decided that I should in fact get PIP. They awarded me the standard rate for daily living and higher rate for mobility. For almost a whole year I had no income while I was appealing this decision, as I had had to give up work due to my MS. My health suffered in that time, as stress makes my symptoms worse.

The money I get from PIP helps me with day-to-day living, and to travel to my hospital appointments. Without PIP I wouldn’t have any independence at all. That’s why I joined the MS Society’s installation of ‘PIPville’ at Westminster today, and helped to deliver a petition to the Department for Work and Pensions, signed by more than 36,000 people, asking the Government to scrap the PIP 20 metres rule.

Under this rule people who can walk a step over 20 metres are not qualifying for the right level of support. This has led to people losing their Motability cars, and for some, they’ve effectively been left trapped them in their own homes. I want to let the Government know about the hurt this rule is causing for people like me. ‘PIPville’ represents the 9,400 people with MS who have lost out on mobility support because of the ridiculous 20 metre rule.

MS is unpredictable and different for everyone, and it’s wrong that I was made to feel like a liar about my condition when I asked for help. And it’s wrong that so many others with MS are losing support. Having MS is hard enough – it shouldn’t be made harder by a welfare system that doesn’t make sense. I had to fight to keep my independence, and I’m fighting now so others can get the support they need to live independently. PIP has to change and that should start with the Government scrapping the 20 metre rule.




Woman with Crohn’s disease has PIP benefits cut

Sorry I can’t add the images [after many tries], please click below link to see them – GN

A woman with a debilitating condition learned her disability benefits were being cut just days after having her bowel and rectum removed. Lauren Reed – who has Crohn’s disease – discovered her personal independent payments (PIP) would be stopped after arriving home after the major surgery.

The 21-year-old from Canterbury, who needs to use a stoma bag, had been reassessed weeks before the operation by a private firm on behalf of the Department for Work and Pensions.

She says her assessor did not even know what a stoma was so she was forced to show her the bag, which collects waste from her bowel.

But in a letter which arrived the day after she was discharged from hospital, Independent Assessment Services said she no longer qualified for the payments. The decision has left Lauren, whose 21-year-old partner is her full-time carer, £220 short each month at a time when her surgeon has advised her not to work.

She says the last few weeks have been “traumatic”. “It’s made me feel absolutely awful,” she said. “One decision has had such a big effect on my life. “I can’t get out, so I’m reliant on my employment support allowance (ESA) and my PIP. Every bit of money is accounted for. “My bag leaks all the time. My wounds are still healing, and are still open. I can’t walk for that long. I’m constantly tired.

“How can they say that I’m totally fine, when they’re not with me 24/7?” Lauren says her assessors knew little about her debilitating condition, which causes inflammation of the digestive system, and failed to carry out a physical examination.

“They asked me questions that had nothing to do with my illness,” she said. “They were absolutely pointless questions. “I was in there for about an hour. [My assessor] didn’t even know what a stoma was, which was quite embarrassing, because it meant I had to show her.

“Trying to explain your symptoms to someone that knows nothing about Crohn’s disease is very hard. “They need health professionals that understand illnesses like mine to do the assessments.”

Having found out last week that an appeal to the DWP to reconsider the decision has been unsuccessful, Lauren now fears she may need to return to her job as a waitress to cover expenses such as antibiotic prescriptions and her stoma, which costs £69 every three weeks.

“They asked me questions that had nothing to do with my illness” – Lauren Reed

PIP is an allowance which is designed to cover the costs associated with a person’s disability. “I’m still healing from the operation, and I’ve still got open wounds,” Lauren said.

“Waitressing is hard because you are carrying heavy things, and I’m tired constantly. “But I can’t live with just ESA. Even if it makes me ill, I’m going to have to go back to work.”

A spokesman for DWP says it is “committed to ensuring that disabled people get the full support that they need”. COMMITTED MY FOOT

“Decisions are made following consideration of all the information provided by the claimant at the time, including supporting evidence from their GP or medical specialist,” they said. “All claimants have the right to appeal and can present further evidence to support their claim as part of this.” YEAH YEAH SAME OLD BULLSH*T


Anger as MS sufferer’s benefit stopped after nurse’s report is tampered with

Marion Fellows MP  speaking in the House of Commons

A Scot with multiple sclerosis and mental health problems had disability support stopped after benefit chiefs “tampered’ with a nurse’s report.

The 50-year-old only discovered the “audited” new version of his health assessment when he asked for copies to make an appeal.

He said no one spoke to him or the nurse before the report was altered and benefits were stopped.

An ATOS assessment form which Marion Fellows MP claims was altered by officials(Image: Daily Record)

Tory Work and Pensions Secretary Esther McVey faces demands to halt such “audits”.

The victim’s local MP, Marion Fellows of the SNP, said: “The tampering of a health assessment report by someone who wasn’t even in the room is utterly disgraceful and deceitful.

“It shows that, for many people, the system is rigged against them and the outcome is a foregone conclusion.”

The claimant had been on basic support for two years when he was summoned to be assessed for Personal Independence Payments (PIP), designed to help with the cost of living with debilitating conditions.

Private firms Atos and Capita, carry out the tests across the UK, but Atos contractor Salus do much of the work in Scotland.

An approved nurse at Salus Glasgow assessed the man in September last year. The Record has seen the original and “audited” versions of his report.

The original says the man, diagnosed with MS last year, has “regular specialist input”. The “audit” simply says he does not.

The original outlines the patient’s MS, depression and anxiety and tells of his difficulties with tasks including cooking, dressing and washing. The nurse noted his clothes were dirty and his top inside-out. The “auditor” removed the second point.

The “audit” changed a part which said the man needed supervision or prompting to wash or bathe, and a section on preparing food. The original said he “needs prompting” but the “audit” said he could prepare and cook a simple meal himself.


And while the original report said the man had “regular specialist input” and took regular medication for mental health, the “audit” baldly stated that he “has no regular specialist input”.

The man, from Motherwell, said: “They didn’t ask me any more questions, they just decided to go back and change the document. I’d say this can’t be a one-off situation.

“It’s disgusting. It’s picking on the weak.”

Fellows, MP for Motherwell and Wishaw, wrote to Atos and the DWP in August about the “audit”.

Atos, who now call themselves Independent Assessment Services, told her they did not choose
which reports were audited. They wrote in an email: “This happens on a random basis. However, independent DWP audits are a DWP process.”

The DWP wrote in their reply to the MP: “If a health professional’s advice is of poor quality which could result in an incorrect decision, the case will fail the audit activity.”

Fellows said that in every section of the report where the man scored points towards getting PIP, the “audit” reduced his score to zero.

She added: “It is outrageous.

“It isn’t even clear who carried out the audit, as Atos say it was the DWP and the DWP say it was someone independent from them. “My constituent is now going to tribunal.

“This sums up the Tories’ austerity-driven welfare regime, which attacks the most vulnerable. “There needs to be a complete halt to these audits, and an inquiry so that whoever is responsible is held to account.”



Surfer and Paralympic hopeful has Motability car taken away by DWP

Llywelyn Williams’ specially adapted vehicle was removed after he missed two appointments to ‘assess his eligibility’ and he is hoping to compete at the next Paralympic Games after losing his leg in a car accident five years ago

Llywelyn Williams, 21, is hoping to compete at the next Paralympic Games after losing his leg in a car accident five years ago

A professional adaptive surfer who had his leg amputated after a car accident in 2011 has had his adapted car taken away from him for the second time. Llywelyn Williams, 23, had his right leg amputated after he was hit by a car while skateboarding between Abersoch and Pwllheli when he was 16 years old.

Mr Williams, who wants to represent the UK at the 2020 Paralympic Games in Tokyo, was told by the Department for Work and Pensions (DWP) last month that his modified automatic car was being removed after they were unable to assess his eligibility.

The DWP took the move because he failed to attend two medical assessments earlier this because of surfing commitments. Mr Williams, who represented Wales in the World Adaptive Surfing Championship in La Jolla, San Diego last year, said: “I was in receipt of higher rate Personal Independence Payment (PIP), which meant that I was eligible for a car through the Motability scheme.

“The car is modified – as I am an amputee I cannot drive a manual, and have to have a modified automatic, to switch the foot pedals round. “Without the higher rate PIP, I am not eligible for the car and I had to return it. “They also took my car away three years ago after deciding I wasn’t eligible but I took it to court and I got the car back.”

Unite general secretary Len McCluskey said: “We need an urgent conversation about how work is made to pay so people can live in dignity… not punished by the Department for Work and Pensions and pressed into pauperism. source

The father of one from Bwlchtocyn near Abersoch says he feels he is being “punished” for living his life to the fullest despite his disability and says the way that DWP approach the assessment is “very short sighted”. He claims he asked the DWP to reschedule his assessment as he was away but “they didn’t respond and scheduled it anyway.” “I was away surfing in the January and in June we didn’t receive any mail saying it was happening,” he also added.: “The difficulty is I push myself, I want to get out and enjoy life, I want to do things, I don’t want to be confined by my disability, but because of this I will lose the one thing that has helped me to lead a normal life.

“I have suffered low points – as a 16 year old who lost his leg to make it to 23 and believe in myself enough to take what I have been given and get on with my life. “This is going to be incredibly difficult for me personally.

“I have a young son – I need a car to collect him and take him for days out, pick him up or drop him off at school – it is not fair to put an extra burden on his mum. “I live in a place where buses come twice a day, public transport isn’t even an option. “I need the car to train for surf competitions as I represent Wales as an adaptive surfer.

“I don’t know how I am going to work and I need it to get to physiotherapy and to see my friends. “My whole life depends on having the use of a car.

“I think the way they are approaching the test is very short sighted and punishes those who are prepared to work at getting on with life despite the physical difficulty they have.”

A DWP spokesman said: “It is important that claimants who wish to continue to receive Personal Independence Payment participate in an assessment to support their claim for benefits.

“Every effort is made to give sufficient notice that a home visit is due to take place, and if the date is unsuitable people can ask for the appointment to be rescheduled.

“Anyone who disagrees with a decision can ask for a review.” YEAH RIGHT!


It’s almost impossible to get a fair Pip assessment

Ann Moore says the ‘health professionals’ often have little or no expertise in the medical condition or disability being assessed. Plus letters from Rev Paul Nicolson of Taxpayers Against Poverty, and from disabled war pensioner Mo Stewart


A protest against the personal independence payment (Pip) in December 2017
 A protest against the personal independence payment (Pip) in December 2017. 

I fully empathise and sympathise with the article about Andrew McDonald (Top former civil servant lambasts ‘hostile’ disability benefits system, 6 October) and recognise the scenario all too well. It is almost impossible to get a fair and accurate personal independence payment (Pip) assessment under the current system.

I volunteer as an advocate for people on the autistic spectrum, helping them with their employment and support allowance (ESA) and Pip applications, writing mandatory reconsiderations and attending tribunals. The whole assessment procedure is indeed “a hostile environment” and “crude and unprofessional”.

The process is demeaning, dehumanising, grossly unfair, flawed and uncaring. Plus, it is a serious waste of public money. The “health professionals” often have little or no expertise in the medical condition or disability being assessed. This is certainly true for my clients with autism. References to “illness”, for example, are common. Yet these brief informal observations, coupled with disingenuous superficial “mental health” screenings, seem salient in the decisions – often in direct contradiction to the completed form and medical evidence.

The Department for Work and Pensions (DWP) insists on evidence. I have repeatedly asked it, on behalf of my clients, to identify what proof could be supplied for such descriptors as cooking a meal, wearing appropriate clothing or washing and bathing without prompting, other than testimony on the form. When the claimant’s – or advocate’s – written statement is discounted, the implication is that the claimant is lying. Nobody would choose to be disabled and suffer this humiliating process.
Ann Moore
Stocksfield, Northumberland

• Andrew McDonald is right to broadcast his dire experience of the administration of Pip by the DWP via its outsourcing to private contractors Atos and Capita.

He criticises the assessment system as a hostile environment and notes that “if you are on a low income the sudden decision to stop Pip is a really serious blow”. We have sent to the UN special rapporteur on human rights and extreme poverty a statement of just how very low that income is for the unemployed after Pip is stopped. The outgoing single adult jobseeker’s allowance of £73.10 a week equates to the incoming universal credit of £317 a month. Prof Jonathan Bradshaw of York University shows it has been losing value since 1979. Increases have been frozen since 2011. Without Pip 270 councils out of 326 since April 2013 enforce a proportion of council tax, and since then JSA also has to pay rent because housing benefit was cut. It is effectively worthless.
Rev Paul Nicolson
Taxpayers Against Poverty

• At the Conservative party conference Theresa May promised to remember all those who died in the first world war, and the defence secretary, Gavin Williamson, saluted the courage of today’s British military forces (.

But in the real world the betrayal of this nation’s disabled war pensioners hasn’t yet made the headlines. All severely disabled war pensioners who were disabled prior to the introduction of the armed forces compensation scheme in 2005 knew that the government acknowledged their service to the nation. They were awarded a military disability pension plus access to a Motability car, provided via the disability living allowance (DLA), as promised for life to every profoundly disabled veteran in receipt of a war pension. With access to a Motability car, these disabled veterans had guaranteed personal transport, which was often adapted to meet their physical limitations and used for daily transport to work for those still capable of earning a living.

But the coalition government decided that 80,000 profoundly disabled working-age war pensioners were to lose DLA, which was replaced by the discredited Pip, and the years of military service to the nation by working-age war pensioners were inexplicably disregarded. Only war pensioners over retirement age were permitted to retain DLA.

Since DLA was gradually stopped and former claimants were invited to claim Pip, many disabled working-age war pensioners have lost their Motability vehicle because they failed to secure access to Pip, which is the new access to a Motability vehicle. Many lost their jobs because they could no longer get to work.

We now have the unacceptable situation of a Conservative government showing gratitude for the sacrifices of British military forces who died 100 years ago while at the same time,the DWP disregards the sacrifice of 80,000 working-age disabled war pensioners and reduces many of them to being prisoners in their own homes.

All disabled war pensioners were disabled in the service of this nation, and all profoundly disabled war pensioners should have been entitled to retain access to the promised DLA for life, instead of 80,000 of them being forced to succumb to the Pip assessment, which many fail due entirely to the limitations of that flawed assessment.
Mo Stewart
Disabled war pensioner (WRAF), Wisbech, Cambridgeshire


Hundreds die every month after being told to find work

SNP MP condemns “devastating consequences” of Tory welfare policies.

Photo credit: jovike via photopin cc

Hundreds of vulnerable people across the UK are dying every month after being told to start preparing for work, according to new statistics which of been condemned as “damning evidence” of the impact of Tory welfare policies.

Figures uncovered through freedom of information laws reveal 10,950 people died between March 2014 to February 2017 after being placed in the Work Related Activity Group (WRAG) of Employment and Support Allowance (ESA).

The Daily Record reports that this includes up to 1000 Scots, which equates to around 36 ESA WRAG deaths every month. While across the UK, it equates to around 300 deaths per month over three years.

ESA WRAG if for sick and disabled people who assessors believe may be capable of moving into work with the right support, but campaigners and opponents of the system claim some people are being placed in the group when they should be in the higher Support Group.

Their claims are supported by official statistics that show 70% of claimants successfully overturn ESA decisions on appeal, with many of these appeals lodged by sick and disabled people who believe they should be in the ESA Support Group.

Claimants placed in this group are not required to begin looking for work, unless they choose to, and are not subject to many of the strict requirements placed on those in the ESA WRAG.

Campaigners protest against Tory welfare policies. Photo: Getty Images.

Campaigners protest against Tory welfare policies. Photo: Getty Images.

Danielle Rowley, Labour MP for Midlothian, said: “Across Scotland, thousands of people are suffering from years of Tory cuts to lifeline benefits such as Employment and Support Allowance. “Thousands of people have been put through the stress and indignity of unnecessary re-assessments, with more than 10,000 people dying whilst trying to prove they were ‘not fit for work’.”

SNP MSP Bob Doris added: “This is more damning evidence of the devastating consequences that callous Tory welfare policies are having on disabled people in Scotland. “It is imperative that time is called on the Work Capability Assessment. It’s clear the Tories shameful and disastrous welfare policies are making life even more difficult for thousands of people, as well as pushing people into debt and crisis.

“It’s time the UK Government hand over all the powers over welfare to the people of Scotland so we can build a social security system based on dignity and fairness – which the people of Scotland demand and deserve.”

A Department for Work and Pensions spokesperson said: “ESA is an income replacement benefit awarded to people who have a health condition or disability, which will of course include those people with the most serious illnesses.

“The department does not hold information on the reason for death of a claimant, therefore it would be inaccurate to assume any causal effect from these figures between the benefit and the number of people who have sadly died.”


Former watchdog chief labels disabled benefits process a ‘hostile environment’

Andrew McDonald
 Andrew McDonald says the PIP process works against the interests of the disabled.

A former top civil servant has criticised the disability benefits assessment system as a “hostile environment” after being told he was ineligible for support despite having Parkinson’s and terminal prostate cancer.

Andrew McDonald, 56, who ran the parliamentary body overseeing MPs expenses before retiring on health grounds, had his benefits stopped after assessors decided he was no longer ill enough to qualify for personal independence payment (PIP).

McDonald described the assessment process undergone by hundreds of thousands of chronically ill and disabled people each year as crude, unprofessional and Kafka-esque in its complexity.

“I was shocked by the way this was being administered against the interests of some of the most disadvantaged people in the country,” he said. “PIP is beset by profound administrative failures which work to the disadvantage of disabled people.

“My personal interactions with the [PIP] process were perfectly pleasant; but the system as a whole does create the impression of it being a hostile environment and one where two of the foes are complexity and the sense that it is not a level playing field [for claimants]”.

McDonald, who chairs the disability charity Scope, said: “I thought this was a system to give people a hand up; in practice they encounter a sleight of hand that is completely out of kilter with the best traditions of British public service in which I was not only raised but worked for most of my career.”


He called on the government to look afresh at the entire PIP process, which has been dogged by controversy since it was introduced in 2014 as a way of cutting the disability benefits bill. The controversial assessments are carried out by private contractors Atos and Capita.

Earlier this year, a cross-party committee of MPs concluded that the PIP process was error-strewn and insensitive, after hearing evidence of poor practice from more than 4,000 claimants. The government responded that it was working to improve the system.

PIP is intended to help with the additional costs of living with disability, estimated at £570 a month. It is not means tested or related to employment status and is typically used to meet special transport needs or health-related heating or food bills.

McDonald was diagnosed with Parkinson’s, a degenerative disorder of the central nervous system, in 2007. Three years later, he discovered he had prostate cancer and was subsequently told by doctors it was incurable. He is shortly to undergo brain surgery in attempts to mitigate some of the worst effects.

He retired in 2014 as the chief executive of the Independent Parliamentary Standards Authority and qualified for PIP the following year, a decision which was reaffirmed at review in 2017. Each time, assessors awarded him 11 points, comfortably over the eight point threshold for lower-level PIP support, which amounted in his case to about £3,000 a year.

At his third review assessment in March, however, he was awarded two points – a decision which suggested his health was improving. “I was flabbergasted: I had two progressively degenerative conditions and my Parkinson’s had become worse since the turn of the year,” said McDonald. “It’s now described by my neurologist as ‘very severe’.”

The assessor – an occupational therapist – had little understanding of Parkinson’s, he said. “She did a common test of twisting the forearm at the elbow. She concluded from this I have full power in my upper limbs. It’s nonsense. Daily, it is a nuisance to me that I am weak as a kitten in my upper body. ”

The system failed to account for the way Parkinson’s fluctuates dramatically, through the day and over time, he said. “I got dressed today without too much trouble, though my cufflinks eluded me. Two days ago, it took me 90 minutes because of the tremor in my hands, my lack of strength. Putting on jackets is a nightmare.

“That sort of variation from day to day could be captured in the system but, in practice, the people in the system I was working with were not capturing it.”

He asked the Department of Work and Pensions (DWP) to review the decision but it upheld it on the grounds that, although it was “surprising”, the assessment showed his condition had improved and it was up to him to supply evidence to prove that it had not. The DWP was effectively suggesting the loss of his benefit was his own fault, he said.

A DWP spokesperson said it monitored the quality of the PIP process to ensure it worked well for everyone. “We constantly seek to improve the quality of PIP assessments. We have undertaken two independent reviews of PIP and most recently announced that we will pilot video recording of assessments, to help increase people’s trust in the assessment process.

McDonald’s benefits were stopped in April and he lodged a tribunal appeal against the decision within weeks. Four months on, he is still awaiting a date for a hearing.

Although the government has promised that people with long-term degenerative diseases should no longer be given annual PIP assessments, this does not apply to claimants, such as McDonald, who received lower-level awards.

He had been able to manage financially without PIP, he said, but he was aware not everyone could. “If you are on a low income the sudden decision to stop PIP is a really serious blow – and it’s a blow from a bewildering system.”