Terminally ill woman’s fight for PIP

A Terminally ill woman is forced to fight for her benefits.
Lorraine Cox who suffers with Motor Neurone Disease has made a stand to challenge the legal definition of a terminal illness after she she says she was ‘refused access’ to a fast-tracked disability allowance due to the uncertainty over how long she has to live.
She was required to still look for work months after she medically retired because of her condition.

The 40-year-old then underwent a medical assessment for both ‘Universal Credit’ and ‘Personal Independence Payment’ (PIP) due to a rule which states that those who qualify for payment are expected to die within a period of six months.

Ms Cox who was diagnosed with Motor Neurone Disease back in 2018 told the Herald; “The process of seeking to obtain benefits has continually exacerbated my stress levels and anxiety.


“I have had to constantly fight to get the same entitlement to benefits as other people who are terminally ill. WELCOME TO MY WORLD! “Despite being diagnosed with a terminal illness, I was refused fast track access to additional support and had to show that I was searching for work in order to receive universal credit.”

Lorraine added, “I wouldn’t wish my experience on anyone. I believe the system has failed me and the approach to dealing with people who have a terminal illness needs urgently addressed. I have accepted my path in life now but please don’t put anyone else through it.”

Law Centre NI legal officer, John McCloskey, who is assisting Lorraine in her application explained; “The inclusion of the six month criterion in the legal definition of a terminal illness has been described as cruel.
It is restricting access to support for people at a very difficult time.

“The six month rule was introduced over 30 years ago and was intended to assist people in accessing special terminal illness rules, not restrict them. It is now hurting terminally ill people who have an illness that’s more difficult to accurately predict.

“The Westminster all-party parliamentary group for terminal illness described the six month criterion as ‘unfit for purpose’ and called on the UK government to amend the legal definition of a terminal illness.
“Walter Rader, in his independent review of PIP in Northern Ireland, recommended that the clinical judgement of a medical practitioner should be sufficient to allow special rules to apply. We are now testing whether the application of the six month criterion is in fact lawful.”

Tory policies have killed a quarter of a million people in the last decade

Austerity deaths and COVID policies have sent tens of thousands to an early grave.

A decade of Tory austerity, coupled with the more recent COVID-19 mismanagement, has killed over 250,000 people, an exclusive TLE investigation has revealed.

More than 100,000 people have died following social security cuts, while around 120,000 perished due to reductions in health and social spending and experts have predicted that the UK’s COVID-related death toll of circa 60,000 is double the number it needed to be.

Coupled with the tens of thousands of lives cut short by a failure by successive governments to impose tougher legislation to tackle air pollution and you have a pretty grim picture.

Why is the Work Capability Assessment Costing Britain More Than it Saves?

Social security deaths: “Cover-up”

As part of Tory-Liberal coalition and later Tory government “reforms,” unprecedented numbers of social security claims were denied or terminated. Between March 2014 and February 2017, 119,590 deaths were recorded by the Department for Work and Pensions (DWP).

The deceased had recently been “flowed off” Incapacity Benefit, Severe Disablement Allowance, and/or Employment Support Allowance. Many died as a direct result: Stress triggered fatal heart-attacks, strokes, and seizures; significant numbers of claimants with depression killed themselves; anxiety shortened the lives of terminally-ill people; and some starved to death. In the same period, life expectancy declined. Consider the following cases as a tiny sample of the broader toll:

After his social security was terminated, Mark Wood (44) of Oxfordshire was found dead, weighing five stone. Likewise, Errol Graham (57) died in his Nottingham flat with no gas or electricity, weighing four-and-a-half-stone.

TORIES: And the cost of a life

Forty-nine-year-old James Oliver’s death in Hastings from chronic liver disease was accelerated by the stress caused by the DWP’s refusal to award social security. His brother, David Smith, says that James sank into despair: “He just downed more or less anything he could lay his hands on.” The death of Moira Drury (61) of Essex, who had cancer, was also hastened by the torment. Her daughter Nichole said: “She told me the day before she died that the stress of having her benefits removed contributed to her decline.”

David Barr (28) of Fife jumped from the Forth Road Bridge after his money was stopped. Leanne Chambers (30) drowned herself in the River Wear, Durham, in fear of an impending Work Capability Assessment. Citing data protection, between 2015 and 2020, the DWP destroyed 50 internal reviews into claimants’ suicides. Linda Cooksey, the sister of the blind and agoraphobic suicide victim, Tim Salter, describes it as a “cover-up.”

Health and social care cuts: “Economic murder”

In addition to the above, successive Tory governments cut back on health and social care. A few years ago, the BMJ published a study suggesting that 120,000 people in England alone had died and would die between 2010 and 2020 as a result of health and social care cuts. DWP cuts killed people of all ages. Health and social spending reductions mainly ended the lives of the over-60s.

According to the study, between 2001 and 2010 under Labour PMs Tony Blair and Gordon Brown, average per capita health spending increased by 3.8 percent a year. Deaths decreased by 0.77 percent. Between 2010 and 2015 under the Tory-Liberal coalition, annual spending increased by just 0.4 percent and excess annual mortality increased by 0.87 percent. The majority of the estimated 45,000 excess deaths between 2010 and 2014 occurred in care homes.

Since 2010, the Tories have cut local social care budgets by 9 percent per person. Age UK found that by 2019, 1.3m pensioners, including those who could afford to pay, were waiting for care home vacancies. Between June 2017 and December 2019, 74,000 elderly people in England alone died without receiving the social care they needed. Care providers typically say that applicants either do not meet eligibility requirements or the applicants are passed to other service providers.

Just a few DWP victims:

Consider the effects of cuts to the health system.

Over 5,000 people died between 2016 and 2019 on hospital trolleys after waiting between six and 11 hours for treatment. Donald Driver (84) of Coventry died after falling from a trolley, following a six-hour wait: “had my father been prioritised … [he] would still be here,” said his daughter, Emma. Ambulance response times are worsening. Joseph Edge (74) of Denbighshire, Wales, died of a heart-attack after waiting 16 hours for an ambulance. In addition, between 2013 and 2017, appointment waiting times increased by 50 percent and preventable deaths increased by a quarter. Norma Smith (57) of Cumbria died of a heart-attack and from oesophageal cancer, following a seven-month wait to see an ear, nose, and throat specialist.

Cambridge Professor Lawrence P. King, who participated in the BMJ study, described austerity as “a public health disaster. It is not an exaggeration to call it economic murder.”

Coronavirus: Government PIP figures provide fresh evidence of virus deaths

Covid-19: “Superman”

The decade of Tory-Liberal cuts brought much of the UK to the brink of collapse. Then COVID-19 struck. The Tory cult of ultra-neoliberalism’s first reaction was to save profits (“the economy”) by carrying on as normal.

“[W]hen there is a risk that new diseases such as coronavirus will trigger a panic and a desire for market segregation that go beyond what is medically rational,” Boris Johnson told businesses in February, “humanity needs some government somewhere that is willing at least to make the case powerfully for freedom of exchange.” Johnson said that the UK (meaning the poor and vulnerable) would be that country: “ready to take off its Clark Kent spectacles and leap into the phone booth and emerge with its cloak flowing.”

Superman Johnson turned out to be a COVID super-spreader, boasting on 3 March, and in defiance of local guidelines for physical contact: “I was at a hospital where there were a few coronavirus patients and I shook hands with everybody.” Some in Johnson’s cabinet, as well as his scientific advisors, subsequently caught COVID. Following the alleged advice of Dominic Cummings (which he and the government deny), namely “herd immunity …if that means some pensioners die, too bad,” it was as late as 23 March that the UK officially locked-down. The Johnson government also refused to follow World Health Organization guidelines on tracking, testing, and tracing.

By June, the Office for National Statistics reported 63,000 excess deaths, the majority of which were linked to coronavirus and its effects. In the US, research suggests that early lockdowns could have prevented significant rates of mortality. In the UK, Professor John Edmunds of the government’s Scientific Advisory Group for Emergencies said: “I wish we had gone into lockdown earlier. That has cost a lot of lives.” Two days later, Professor Neil Ferguson, one of the original modellers at Imperial College London, told the Science and Technology Committee: “had we introduced lockdown measures a week earlier, we would have reduced the final death toll by at least a half.”

Ergo, the Johnson administration is responsible for at least 30,000 COVID-related fatalities.


also see

PIP: Just how long is a piece of string?


PIP claim: Benefit rules for the terminally ill are to finally change – DWP insists ‘shortly’ ‘shortly’ what does that mean!!!!

See the source image

PIP – Personal Independence Payment is a payment which replaces the Disability Living Allowance (DLA). Today, DWP minister Justin Tomlinson told MPs a “change” to certain rules for PIP claims is to be delivered “shortly”.

MPs put questions to Work and Pensions Secretary Therese Coffey and her team of Department of Work and Pension (DWP) ministers today in the House of Commons. During the Work and Pensions Questions, Chris Evans MP asked Justin Tomlinson about the current six-month life expectancy rule relating to claiming PIP under Special Rules for Terminal Illness.

Currently, a person must be aged 16 or older and usually have not reached state pension age. Eligibility rules also state they must have a health condition or disability “where you:

  • Have had difficulties with daily living or getting around (or both) for three months
  • Expect these difficulties to continue for at least nine months”.
PIP claim: Justine Tomlinson MP was asked about the changes to PIP in the House of Commons
“SHORTLY” How long is a piece of string!

Usually, they will need to have lived in England, Scotland or Wales for at least two of the last three years, and be in one of these countries when they apply. For terminal illness, there are different rules when it comes to claiming PIP.

Gov.uk states that “you can claim PIP if:

  • Your doctor or a medical professional has said you might have less than six months to live
  • You are aged 16 or over and usually have not reached state pension age”.

Charities have urged for reform to the rules, saying the six-month rule forces people to “prove they have six months left to live”.

A review into the system was launched last year.

Today, Mr Tomlinson said that the Department had made “good progress”, adding that they “expect to be able to provide an update on the outcome of the evaluation shortly”.

Demanding reform in the House of Commons today, Mr Evans said that only 50 percent of people diagnosed with Motor Neurone Disease can claim under the PIP speical rules due to the six-month life expectancy rule.

PIP claim: Chris Evans MP asked about the changes to PIP in the House of Commons

PIP claim: Chris Evans MP asked about the changes to PIP in the House of Commons. He said that others with the condition are having to go through the standard prodecures.

“Motor neurone disease is an utterly wicked, terrible disease,” he said. “Those who have it are locked in and see their bodies waste away, while their families watch their loved ones slowly slide away.

Mr Tomlinson today went on to assure changes would be coming into effect.

He added that the coronavirus crisis had resulted in a delay in the evaluation, but a change was to be brought forward “shortly”.

The minister said: “The Secretary of State and I are passionate about making changes: it will not be the status quo. “Covid-19 caused a delay to the final part of the consultation with the medical professionals, but we will bring forward a change shortly.”


Where to go for benefits help


Watchdog snubs call for investigation into DWP deaths

Watchdog snubs call for probe into DWP deaths, after delay of more than a year – By John Pring


The equality watchdog has rejected calls for it to investigate deaths linked to the Department for Work and Pensions (DWP), more than a year after an MP asked it to launch an inquiry.

Labour’s Debbie Abrahams, a former shadow work and pensions secretary, first approached the Equality and Human Rights Commission (EHRC) in April last year with her concerns about links between DWP and the deaths of benefit claimants, and the wider impact of DWP policies on disabled people.

Eight months ago, the commission said it was reviewing what “potential” work it could undertake to tackle “discriminatory decision-making in the social security system” and would respond to Abrahams “in due course”.

Now, 14 months after she first raised concerns with the commission, and following another “holding reply” in February, EHRC has finally decided that, “due to the pandemic”, it will not be able to carry out an inquiry into DWP this year.

It only produced this response after being approached again by Abrahams and Disability News Service (DNS).

continue reading at source

read more on DWP deaths

DWP restores payments for man with brain damage

MP Gavin Newlands says ‘the system is failing those in the greatest need’
MP Gavin Newlands says ‘the system is failing those in the greatest need’
A FATHER with brain damage left living on toast to save food for his family after the DWP slashed his benefits has had his payments restored after the ordeal was exposed by our sister title The National.

Scott (not his real name) said he spent days eating only bread to ensure his wife Lorna and their children, aged six and one, had proper meals after assessors ruled he should no longer receive any Personal Independence Payments (PIP).

The £450-per-month loss left them reliant on food banks and charity support after the DWP said he was ineligible for help.

That’s despite the fact Scott lives with constant migraines, memory problems, speech problems and muscle weakness after a devastating car crash a decade ago.

The 34-year-old was cut from the passenger seat of the wreckage and has been unable to return to work since. Doctors caring for the Renfrewshire man, who also has complex mental health issues, wrote to authorities to explain and said the PIP wrangle had left him “very distressed”.

Scott was backed by the brain injury association Headway and his MP Gavin Newlands told this newspaper that the case shows “there is something deeply wrong with the benefits system”.

But ten days after The National revealed Scott’s ordeal, the DWP has confirmed it will reinstate his PIP support and backdate payments. And he will not have to prove his impairments to assessors again until 2030.

The Paisley man said: “I’m very relieved – but I found out on the phone and I won’t believe it until I get the letter in. This means a bit more stability for us and I can stop stressing and starving myself because I can make sure there’s enough food to feed us.

“I was starving myself to make sure they had enough to eat. I wasn’t eating anything but toast for three or four days at a time, I’ve lost a lot of weight. “It’s shocking that this can happen. I was just asking for what I was due. “And I’m not the only one in this position, I’ve just had enough strength to go further with it.

People need to keep fighting – don’t take the DWP’s word for it, take things further.”

The couple asked The National not to publish their real names for fear of stigma over their financial struggle. Their MP commented: “I was delighted to hear my constituent has quite rightly had his PIP payment reinstated, although still hugely disappointed at the time and effort it has taken to get to this position. Yet again, another DWP decision has been found to be misguided and inaccurate.

“These are people’s lives we are talking about, the DWP really has to take a look at its processes to identify the huge number of failings that leave vulnerable people in situations of great stress through no fault of their own. The system is failing those in the greatest need and the UK Government needs to act on this.”

The DWP said it is unable to comment without written permission from the claimant.

However, the department says it is “committed to helping people get the support they are entitled to and decisions are made based on all the evidence we have received at the time”.

Peter McCabe, chief executive of brain injury association Headway, said Scott’s story is sadly not unique, adding: “We are working with the DWP and assessment firms to enhance the process of applying for benefits and improve understanding of brain injury.


PIP: A woman who has MND is challenging the legal definition of a terminal illness

Lorraine Cox

A woman who has Motor Neurone Disease is challenging the legal definition of a terminal illness after she had to wait more than a year to qualify for Personal Independence Payment (PIP).

Lorraine Cox, who is from Derrylin, is seeking a judicial review at Belfast High Court. She told BBC News NI her award of benefits should have been fast-tracked without the need for assessment.

Ms Cox said she had worked all her adult life and received her diagnosis in 2017 when she was 37. There is no effective treatment for Motor Neurone Disease, which sees muscle waste away after a loss of nerve cells that control movement, speech and breathing.

It is estimated that about half of the 1,500 people diagnosed each year in the UK die within 24 months.

“When I got the diagnosis, I thought, well you know, this is pretty straightforward as you would think, you’d get your benefits and you’d have a chance then to move on with your life and live whatever time you have left as best as possible,” Lorraine Cox told BBC News NI’s Good Morning Ulster. “However, that has not been the case.”


Despite having letters from her GP and consultant to confirm her condition was life-limiting, she was approved for PIP in February 2020 following two years of mandatory reconsiderations, tribunals, appeals, two PIP applications and face-to-face assessments.

Ms Cox added she wanted to speak out to explain how “patronising it is and intimidating, and belittling”.

“For anyone who is terminally ill they don’t need this additional stress.

“This should be eradicated and I would hope going forward, please God, common sense will prevail and the legislation will be reviewed and changed so that people like myself will never have to go through this interrogation process.”

She continued: “I know a lot of people can relate to this. “I suppose probably an awful lot of people have given up or did give up, because I felt like giving up many a time.”

Ms Cox said she was taking the judicial review “to make sure no one else” has to go through the same process. The hearing is set to continue on Friday.

Does Carer’s Allowance affect PIP?

CARER’S ALLOWANCE and PIP payments are vital sources of income to those who claim them. Does Carer’s Allowance affect how much PIP you can receive?

If you are claiming Personal Independence Payment, the DWP now has ...

Carer’s Allowance and Personal Independence Payment (PIP) are both state benefits for disabled people and those who care for them. The money can help towards the cost of care and promote independent living.

There are two components of PIP:

  • a daily living component
  • a mobility component

Each component can be paid at either:

Standard rate – where your ability to carry out daily living/mobility activities is limited by your physical or mental condition.

Enhanced rate – where your ability to carry out daily living/mobility activities is severely limited by your physical or mental condition.

Claiming Personal Independence Payments (PIP) | Crohn's & Colitis UK

To be able to claim PIP, you must have a long term health condition or disability that affects your ability to function as a person without your condition does in everyday life.The amount you get depends on how your condition affects you in your own personal circumstances, not on what condition you have. It can take up to four months from the date you started your application to when you get your money. However, if you are terminally ill your claim will be processed quicker.If you already claim Disability Living Allowance (DLA) and are moving over to PIP, your payments won’t stop while your PIP claim is being processed.

If you think you can get PIP, you should apply as soon as possible.  It can take up to four months from the date you started your application to when you get your money.

If you already claim Disability Living Allowance (DLA) and are moving over to PIP, your payments won’t stop while your PIP claim is being processed.

To be able to claim Carer’s Allowance, you must care for someone with a disability for at least 35 hours a week, and be able to prove this.

If you look after more than one disabled person, you cannot add together the separate hours you spend on each person, and you can only get one payment no matter how many people you care for.

If you are in paid work, including self-employment, you cannot get Carer’s Allowance if you earn more than £128 a week, after deductions.

Take the PIP test online before you apply and find out how much money you could get from the DWP

Does Carer’s Allowance affect PIP?

Carer’s Allowance can affect other benefits you receive, but PIP is not one of them. PIP can be paid regardless of your income, savings or National Insurance contribution record and is a tax-free benefit.

You can get PIP even if you are working or studying. When you claim Carer’s Allowance, the person you care for will stop getting: a severe disability premium paid with their benefits an extra amount for severe disability paid with Pension Credit, if they get one

They might also stop getting reduced Council Tax. You should contact their local council to find out if this affects them.

There are no restrictions on how you can spend your PIP money, and you do not have to spend it on paying for the care that you need. However, your local council can take PIP payments into account when calculating how much you might need to pay for any care services.

During the coronavirus pandemic, you do not need to attend a face-to-face assessment meeting or health check. What’s more, during the pandemic, providing emotional support to someone with a disability now counts towards the hours of care you list.




We can now reveal that almost one in five claimants are recording their PIP assessments. Some who don’t do so regret it afterwards:

What PIP telephone assessments are really like Part I

“I regret it deeply now. I told the consultant everything that I struggle with and I was awarded 0 points. The letter I’ve got says everything differently.”

“Unfortunately not, I wish I had. I felt pressured to answer questions at a certain speed, and felt the assessors manner was loud and intimidating, amongst other things.”

We’ve even heard from one claimant where the assessor recorded the interview:

“I was told by the Assessor that she will be recording the assessment, and she asked if I mind, I did not mind at all. Loud dogs barking in assessor’s place or home, half way through the interview. She made no effort to remove them from the area. It was off putting. I think the assessment would of been cut short if they were my dogs barking that loud. A rude, fast talking assessor, who lacked insight about my real medical issue.”

Almost a fifth of people had technical problems with the call. The number one problem was poor sound quality:

“I frequently couldn’t hear him and had to ask him to repeat himself again and again. He seemed to be mumbling and too far away from his phone. He became annoyed and rude just because I couldn’t hear or understand him.”

The vast majority of respondents did not have problems with their assessor’s manner.

But a small minority, 8%, found the assessor unfriendly.

Some had a truly unpleasant experience:

“Upset me greatly with her manner. Seemed to be eating also, the whole experience made me feel like nothing, and she told me she had another person after me to talk to.”

“Shouting at me. Forcing me to hurry up.”

“Assessor was very harsh and rude to me. Shouting at me putting pressure on me to answer quickly. Interrupting me saying I didn’t ask that. She made me so scared and anxious I started crying.”

“She was loud, insensitive, and totally fixated on getting to the end of the assessment as fast as possible (possibly because she was running late).”

Another problem highlighted by the survey was assessors not reading the PIP2 form prior to the assessment

“He actually said ‘I haven’t read it, have I?’ when I referred to my claim from and supporting evidence as if he thought I was stupid to think he had.”

“Did not have form to hand. offered to send copy . Declined. said she had two other cases that day with no forms”

Many people also felt too few relevant questions were being asked, particularly about the mobility component:

“She asked if I could walk whatever distance. I can physically but due to my mental state (agoraphobia, anxiety, panic attacks etc) no I can’t most of the time but Didn’t get a chance to explain because she fired another question before I could think. That was the same for most of it if not all.”

A failure to make reasonable adjustments was also reported by a number of respondents, even though it wasn’t an issue we had specifically asked about:

“I wrote, emailed and had someone phone on my behalf to tell IAS and DWP that I have social anxiety and can’t use phone. There was no option or I would lose claim. So I took a diazepam to enable me to pick up phone and then had a very stressful, unsatisfying conversation with a HP who had no idea about mental health issues and focused mainly on my physical capabilities. I scored 2 points and have lost my claim.”

We’ve used all the information you’ve shared with us to improve our PIP claims guide even further, as we explain below.

We’ve updated our guide to PIP claims after studying over 300 responses to our survey on readers’ experiences of PIP telephone assessments.

The guide now includes details of 10 ‘Problems to be ready for’ if you have a PIP telephone assessment, meaning you’ll be prepared for some of the biggest pitfalls that might lie ahead.

It is by far the most comprehensive guide to PIP telephone assessments available anywhere.

You can download the latest version of the Guide to PIP claims and reviews from the PIP page in the Members Only section of the site.


What PIP telephone assessments are really like

Because so many people have told us about their experiences, we have had to divide this article into two parts. Part two will be published next week.

In brief
You may get an assessment call out of the blue, without any warning. IF YOU DON’T WANT TO THEN YOU DON’T HAVE TO PROCEED

Even if you do get notice, you may not get the legal minimum or not get notice in writing. Most assessment calls are on time. But some are late and some get their call hours before it was due.

Some people do not get called but are nonetheless told that they failed to answer their phone. Some people received a second, follow-up call. Almost half of assessment calls last over an hour, with some running to over two.

The length of the phone call may be used as evidence against you.

One in ten of you said that the assessor was not working from a quiet, confidential location. Some assessors would not allow a family member or carer to help with the assessment.

People responding to our survey were fairly evenly split between Independent Assessment Services (IAS formerly Atos) on 38% and Capita on 36% as their assessment provider. 26% were not sure.

We would have expected to see IAS more heavily represented, given that they cover considerably more of the population than Capita.

No written notice
Having time to prepare yourself for an assessment is important for most people, especially if they need to have someone with them. The law says that you should receive seven days’ written notice of the date, time and place of your assessment. Worryingly, 13% of respondents said they didn’t get any notice at all.

“Call came out of the blue. My husband answered the phone and as soon as PIP review was mentioned and my name he handed the call over to me. Immediate reaction, was this going to be a scam call.”

“I didn’t receive any notification that the call was taking place and didn’t know it was my assessment. The first I knew was when I received a text to say they had now received my report! My PIP was reduced.”

It’s possible that some of those who received a call with no notice were not having a telephone assessment at all. Instead, IAS or Capita may have been doing a paper assessment and the assessor was just checking on a small amount of detail that wasn’t in the forms.

However, that is a process that should take just a few minutes. 30% of the people who got no notice said the call lasted between 30 minutes and an hour, 6% said it lasted over an hour and 21% were not sure. A call of 30 minutes or more is not a legitimate part of a paper assessment.

Incorrect notice
25% of our respondents said they got notice, but less than a week.

“Received letter on Tuesday informing me of my appointments for a telephone assessment will be at 9.15am on Thursday. Two days notice via letter and a reminder text sent early hours on Thursday.”

“Got a text two days before, a letter the day of assessment (today, ) assessment was at 9.15 am and letter arrived at 11.50 am…. Too late.”

“The day before my assessment I received an extremely early phone call, which woke me up, and the woman demanded I give her my NI number before she would tell me who she was, or why she was calling. As I wasn’t able to get up and find it, she got very annoyed and told me that I would *have to have it available for the assessment* which she then told me would be the next day. Then she hung up.”

Added to the 13% who got no notice at all, this means that the law was broken in over a third of assessments

Of those who were informed in advance, 18% only got contacted by phone. This may have been a text in some cases, but we would argue that a text is not the equivalent of a letter in these circumstances.

For many people, the assessment process causes great anxiety. This is made much worse if you are sitting waiting for the phone to ring long after your appointment time.

In general, fortunately the assessor was punctual.

70% said their call was on time, while 12% didn’t know if it was or not because they weren’t given a time.

But 18%, almost one in five, said the call was not on time.

“Half an hour after the appointment I rang and was told the assessor would be a little longer. They were still busy writing the previous report. Another 45 mins after that, the assessor finally called.”

“Appointment was 9.15am. Received first call from assessor at 9.36am informing me of a ‘problem with their systems not booting up’ and she would call me back at 10am. She called back at 10.17am to start my telephone assessment.”

“It was half hour late and the phone rang a man told me that the assessor that was doing my assessment now wasn’t and someone else would be and they would ring in about 15 minutes, all in all an hour late.”

It is worth being aware that the call may also come hours earlier than booked.

“My telephone appointment was supposed to be 11.55 but assessor phoned hour early.”

“The woman doing the assessment rang early.”

““3 hours earlier””

No call
Much worse than a delayed call, for some claimants the call never happened at all.

“Capita did not call. My appointment was at 11.45, I waited and no call was received. I phoned them at 1215hrs and was told that I had failed to attend for my assessment and that they had called 3 times! I was sat with my phone waiting for the call. They then blamed it on Vodafone saying they must have blocked them. I confirmed with Vodafone that no blocks are on my line.”

“I never slept the night before as I was so nervous, I was up early & sat waiting…and waited all day waiting for the phone call to then receive a text at 5.45pm to say it was cancelled! A new appointment was text to me but the assessor I got that day was rude & not very nice. I felt very spoken down to.”

“But my first appointment they didn’t call me or apologise for missing the call / appointment Imagine if that was the other way around.”

Second call
It’s also worth knowing that you may get a second call a day or more after the first. This may be as a result of the assessor’s report being checked by a supervisor who is not happy with some aspect of it.

“Assessor very nice on first call, but when called back it was as though she was looking for ways to catch me out. Had an agenda.”

“The Assessor called back the following morning and said she wanted a better picture of “Going out “. I was completely taken unaware and I believe I was misled into saying how going out made me feel physically ill as opposed to the psychological effects of it. The call lasted for 6 minutes. I am awaiting their decision.”

Length of the call
Be prepared for a long call from the assessor. Many people were told the call would last about 40 minutes. In almost half of cases this was an underestimate.

11% said the call lasted less than 30 minutes and 40% said between 30 minutes and an hour. But 46% said the assessment lasted longer than an hour whilst 4% weren’t sure how long it took.

“My assessment started at 10.30 am and finished at 12.30am I was exhausted!” 

“3 and a half long draining hours”

“2 and a half hours”

“I have ADHD and Asperger’s syndrome which makes it difficult for me to process information and answer the questions in the manner required. The assessor kept saying that she would have to terminate the assessment if I did not answer is the way she needed me to. This was distressing. I explained the stress I was under and fact I needed to get the assessment over with that day. In the end she rang me back – it took all afternoon. (I had explained in my PIP form the problems I would have answering Qs in a Q and A form of assessment and would need more time and frequent stops) I am glad it is over with – but I felt pushed to answer Qs in a certain way.”

Phone call used against claimant
Worryingly, we even heard from one claimant who said that the length of the phone call was used as part of the grounds to remove their PIP award.

“My PIP was not renewed. One of the reasons given was that I managed to continue the phone call for so long. This was despite me being exhausted by the call and highly anxious throughout.”

Another said that the use of a phone had been grounds for reducing points.

“Lost points because I used a phone which was on loud speaker on the arm of the sofa and because I have strength to use a crutch which is wrong”

Somewhere private in your home
Having somewhere private in your home to make a call wasn’t an issue for most of you.

92% of those surveyed said there was somewhere quiet in their home.

But for the other 8% this was a problem. “Had to sit in our car” “Quite noisy neighbours at the time” “ I’m a single parent so had to warn to kids to stay out of the room and watch their tablets” “Also had children who I did not want to hear what was being said.”

Much more worryingly, 12% of you said that the assessor did not have a quiet, confidential place to work from.

Another 22% were not sure whilst 66% didn’t report any problems.

Being assured of confidentiality during such a deeply personal and invasive process isn’t just a goal, it’s an absolute necessity. If an assessor does not have a private space to make calls, they should not be working.

“Could hear other people laughing and making comments in the background. Then someone saying sshhh.”

“Her husband was in the vicinity and I was on speaker phone.”

“There was some noise at the beginning of the call which sounded like cupboards being opened and shut, I was not sure if it was her doing this or someone she was with.”

“Could hear noises in background. At one point she had to stop and ask me to hold for about two minutes.”

“Banging, dog barking , I lost concentration!”

“There was some disruption because of her child in the background.”

“ She was working from home and had a young child to look after.”

Someone with you
You have a right to have someone else, such as a family member or carer, be part of the assessment process. A government minister recently underlined that this applies to telephone assessments as well as face-to-face ones.

In some cases, support from another person was welcomed by assessors.

“The assessor facilitated a 3 way call with my family support worker, was friendly and understanding.”

In other cases, however, the assessor was aggressively opposed to anyone else taking part.

“They didn’t like that call was on speaker phone with my partner present. Told him it was unacceptable to help me. Wouldn’t let me answer with more than a few word’s. Kept cutting me off with things like “that’s not the way pip wants it answered” “I’ve already explained to you” Numerous threats to end the call.”

“The assessor called me a liar on the phone. He demanded that I must speak for myself and not my representative. He told my representative that she is not allowed to talk on my behalf. He was rude and I was made to feel low.”

Next week
In the second part of this article, we’ll be looking at a range of other issues, including the assessor’s manner, technical problems with calls, questions about daily living and mobility and we’ll be hearing from people who have had the result of their telephone assessment.




Over 260k sick & disabled people left waiting for benefit assessments

Over 260,000 sick and disabled people left waiting for benefit assessments due to Covid-19. Mounting backlog is causing growing concern among disability rights campaigners. – Welfare Weekly


Figures published by the Department for Work and Pensions (DWP) in response to a parliamentary written question earlier this week show that as of 27 April 2020 there were 166,630 Personal Independence Payment (PIP) claimants with either an assessment scheduled or awaiting scheduling.

The same figures also show that as of 4 May, 101,910 people were left awaiting assessments for Employment Support Allowance (ESA). It follows a decision by the DWP to temporarily suspend all face-to-face benefit assessments for three months in the wake of the Coronavirus pandemic. However, claimants continue to receive payment at their current rate or assessment rate whilst the suspension remains in force.

Another reason for the growing backlog is that many DWP staff were either lost or transferred to help manage a surge in Universal Credit claims, with almost two million new claims since March 2020.

Commenting on the latest figures, Disability Rights UK Welfare Rights and Policy Adviser Ken Butler said: “The backlog of PIP and ESA claims is very concerning. “We must not return to the situation soon after PIP was introduced where claimants were waiting for well over a year for decisions on their claims.

“The situation has been made worse by the Government making over 20% of DWP staff redundant since it rolled out Universal Credit. “But disabled people should not be disproportionately affected as a result of DWP staff reallocation.

“Disabled people have extra costs as a result of their disability. “Already, disabled adults are four times worse off financially than non-disabled adults.

“The DWP needs to adequately staff disability benefit sections. “It also needs to encourage decision makers to make more use of claimants own medical, written and oral evidence. “Decisions should not be delayed by waiting for discredited medical assessments by privatised companies, three quarters of which are then overturned on appeal.”

The charity has also called for an increase to disability benefit payments, in direct response to recent changes to Universal Credit and tax credits.

Ken Butler said: “Even before the covid-19 crisis, benefit cuts and austerity hit disabled people the hardest. “The £20 week temporary increase to universal credit and tax credits is welcome but should be made permanent.

“It should also properly be extended to those on ‘legacy benefits’ such as ESA. “In addition, the Work-Related Activity Group and UC equivalent Limited Capability for Work addition should be restored.”