Welfare Reform Committee

Meeting date: Tuesday, May 5, 2015

Official Report 516KB pdf

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Your Say-Personal Independence Payments

Good morning, everyone, and welcome to the eighth meeting in 2015 of the Welfare Reform Committee. Everyone should make sure that mobile phones and other electronic devices are on silent or switched to airplane mode.

Our first item of business is a your say evidence session on the personal independence payment or, as it is better known, PIP. The session will be split into two panels. The committee will take evidence from individuals who have either directly experienced a PIP assessment or supported a family member through an assessment.

In the second panel, the committee will hear from an adviser at the Orkney Citizens Advice Bureau. That will offer the committee the perspective of an island community and the particular challenges that are presented to PIP claimants there.

We welcome Mairi MacGregor; Moira Sinclair; Alison Arnott, who is supported by her father, Norman Gray; and Lindsay Souter. We have invited you here today to share your experiences of claiming PIP. The committee will ask a range of questions. We are keen to hear about any issues that you faced, how easy it was to apply and anything that you think could be improved. If at any stage you feel uncomfortable or you do not wish to answer a question, please just say so. We are not here to put you on the spot; we are looking for advice and information. Just say no to any question you do not want to answer, and we will move on. Please do not feel that you are under any pressure to answer any question that you feel uncomfortable with.

I believe that you have each prepared an opening statement. I invite the person who has agreed to go first to start.

Our submission draws attention to the unsatisfactory way that Atos assessments are carried out. In the early days of your say, I was one of the first people to appear before the Welfare Reform Committee and make a submission about the consequences of the welfare reforms and Atos assessments. At the time, I was speaking about the consequences of my son being refused the points that were necessary for a PIP award, but I can now speak of the experience that my daughter had during her assessment.

Two years past September, my daughter had an accident on the trampoline while attending her adult gymnastics class at the national gymnastics centre in Falkirk. She was hospitalised for a short period, part of which she spent on a spinal board and in head restraints, and she was then released home to attend hospital as an out-patient. Six months later, it was found that she had suffered a double brain injury at the front and back of her head following her impact with the trampoline bed. Her injury has left her with a right-sided weakness in her arm and leg and some difficulties in managing herself and her household and, more important, an almost complete loss of short-term memory. Those disabilities impinge directly on her ability to fulfil her role as a physiotherapist and, after two workplace assessments, she was deemed to be unfit for work by the Greater Glasgow and Clyde NHS Board.

With the assistance of the local citizens advice bureau, she completed her PIP application form and she was then called for an assessment interview. The outcome was a denial of her PIP award, so she again sought the CAB’s help to appeal it. As part of the process, I submitted the attached letter of observation on her assessment. We inquired whether her rehabilitation team had been asked to submit a report, and it indicated that it had not but that it would ensure that one was presented. She then received a letter stating that the appeal was unsuccessful.

My daughter notified Atos that she would go to a tribunal. Today, my daughter received notification that Atos has closed her case and granted her an award based on a change in the points awarded in the first few indicators. The award includes mobility at the higher level. When my daughter asked the CAB about the fact that no change had occurred in the cognitive indicators, it indicated that, once the points threshold has been reached, there is no need to consider others.

The Atos assessment process has caused my daughter great stress and upset and much anxiety and upset at the award stage. The process is not fit for purpose and it ought to be reviewed to make it much more client-friendly.

I have some observations on the PIP assessment report that I submitted as part of the appeal. I, Norman Gray, along with my wife Mrs Helen Gray, attended Mrs Arnott’s assessment at her request because of her anxiety about facing an unknown person and being faced with questions.

Since Mrs Arnott’s accident and her return from hospital, I have acted on her behalf in matters concerning meetings, reports and so on because she no longer has the cognitive ability to do so. My presence means that Mrs Arnott is less anxious and can respond to questions knowing that I will intervene or prompt her as necessary. Without the prompt, Mrs Arnott will look bemused for a short time, become visibly agitated and jiggle her legs and ask, “What do you mean?” That happened once during the assessment when she was asked to reply to the memory question.

Mrs Gray has given Mrs Arnott emotional support during these events by trying to keep her calm and in a fit state to answer questions. When any questions relating to Mrs Arnott’s accident arise, Mrs Arnott becomes very emotional and upset, as witnessed by her reaction when she was asked about her level of fitness. She burst into tears and said, “I used to be so fit, but I can’t do anything now”.

Our presence at the assessment at Mrs Arnott’s request allows us to counter the impression that is given on page 2 of the report that Mrs Arnott does not experience a notable level of anxiety. The report dwells overmuch on the anxiety factor and fails to acknowledge the true impact of the physical and cognitive factors that were raised at the interview. All three factors combine in varying degrees at various times in her situation.

I wish to refute some of the comments that are made on page 2 of the assessment report as being contrary to events at the assessment, and thus to challenge the detailed points awards. The report states that no significant cognitive impairment was found and that Mrs Arnott could give a full history. The history that Mrs Arnott was asked to give was not a full history but one that was dictated by a series of questions from the assessor that related to events that are deeply implanted in her brain because of the trauma that she experienced.

Mrs Arnott’s cognitive issues were well demonstrated on the memory task. Three objects were placed before her with other desk materials round about, relatively nearby, including an expenses envelope. When asked to tell the assessor what the objects were that had been placed, she needed prompting by the assessor, then she thought for a time before giving answers, which did not lead to the three items but to other items on the desk. Eventually, she did get all three.

In reply to the request to repeat the address that she had been given verbally, she looked bemused, cast her eyes round the desk and then gave the address that was printed on the expenses envelope that happened to be lying on the table. When asked to subtract 75p from £1, she paused for a while, then asked, “Could you write it down, because that’s the only way I can do it?” When asked to subtract 3 from 20, she got it wrong at first, then got it right by counting down on her fingers. Those events negate the claim that

“there was no significant impairment found at assessment”

and run contrary to the indicator scores for reading and understanding, communicating verbally and, by inference, making budgetary decisions.

The next point was:

“You are not on a high dose of medication for anxiety.”

I fail to see where that conclusion came from. Although the assessor verified which medications Mrs Arnott was taking, he did not ascertain what each one was prescribed for. I know for a fact that no report was sought from Mrs Arnott’s Headway team, and her GP has not given her an indication of being asked for one.

The next point was about taking the children to school. The report overemphasises the role of anxiety in making a decision. At the assessment, Mrs Arnott indicated that there are a number of factors, such as her physical condition and her cognitive disabilities, that make driving stressful for her and create anxiety over the welfare of her children. However, she could see no alternative to doing that task herself.

The next indicator was “Planning and following journeys”. During the assessment, Mrs Arnott stated that she can drive within the confines of Denny and through to Falkirk only because she had been shown the way and has now done it often enough for it to be implanted. She indicated that she was not capable of planning and following an unknown route. I would contend that the assessment and score allocated to that indicator is erroneous and is not based on Mrs Arnott’s evidence.

There are other aspects of the report that I would take issue with, but they do not stem from evidence presented at the assessment interview. That is my submission.

Thank you, Mr Gray. Let us hear next from Moira Sinclair.

I welcome the chance to share my views on and experience of the move from disability living allowance to PIP. I have not yet moved to PIP; I am awaiting word on when I will be reassessed for it. It may seem odd that I focus on transport and mobility but, as I hope I will make clear, that is where I will feel the issues most keenly. I am lucky. I currently have an indefinite award of DLA at the higher rate for mobility, and I think that it will be next year before I am reassessed for PIP. I am already terrified of what that might mean.

I am disabled. I am lucky; there are many in a worse position than me. I have been disabled to differing degrees since childhood. I had my first surgery at the age of 11 and have undergone numerous surgeries to put pins and plates in my hips and pelvis. I have had hip replacements and I will be due for another set at some point very soon. I have had a disc removed from my back, which has partly led to osteoarthritis throughout my body, from head to toe, affecting my back, hips, neck, shoulders, ankles and hands. It is everywhere, and obviously I take a lot of medication for all of that.

My condition is variable. I have a normal, underlying level of pain that is there every day. If it is particularly bad, I can be completely incapacitated and unable to get out of bed because of back spasms. It has also affected my activity. If I force myself to do something, the likelihood is that I will pay for it soon after. That increases pain and a seizing up of all the joints. However, I try to live as normal a life as possible. I work full time and have done so for most of my life since I left university. My family and friends help me to complete daily tasks and to live as full a life as I can.

10:15  

I start the day early. I take my painkillers and wait for them to kick in before I start the slow process of washing, for which I have a seat in my bath, and dressing, which can take a while. However, I build that into what I do every day in my life. It can take me up to three hours to be ready to leave the house. I deal with that every day before I go to work—but I do it and I go to work.

Sometimes, on a bad day, I cannot drive because of the pain, but I am very lucky that my father is able to drive me. I will get him to drive me to work rather than take a day off. I am usually in pain to a greater or lesser degree, but it would be awful to let that stop me doing anything.

What do I think the changes would mean for me? My first thought is about what I understood the purpose of DLA to be. I understood that it was a payment that was meant to offset the increased costs that I incur because I am disabled—that it was a way to level the playing field. Those costs could result because I pay someone to do my ironing for me, because I seem to damage shoes quickly because of the way that I walk and trip or because I cannot walk any useful distance and will incur higher transport costs, for example. That is the focus of my payment, as I receive the higher rate for mobility, but nothing for the care component.

I choose to use my allowance to fund a car under the Motability scheme. Because of my disability, I need a car with a high seating position, and I feel that, as I drive a lot, especially to get to work and on holidays in the Highlands and Islands—they are easier than trying to negotiate airports and make arrangements to go overseas—I can justify driving a four-wheel drive vehicle. After all, when it snows, I cannot leave the car and walk away.

The DLA covers only the cost of a standard car, of course. Working allows me to pay the advance payments that are required to get the car that I want. Over the years, I have paid thousands of pounds to lease the cars that I have wanted. It is disappointing that some seem to believe that I am given that car, and that such reactions appear to be behind a crackdown and a decision to reduce the payments of DLA. Would it be more acceptable if we went back to the days when I would have been given an invalid carriage that would not suit my needs as an individual?

My award of DLA at the higher rate for mobility is also a passport to get me my blue badge, and I have an allocated disabled space in the car park beside my house. I do not receive any other benefits—financial or otherwise. The blue badge and the disabled space are invaluable in allowing me to live a normal life. There is allocated blue badge parking at my workplace, so I can continue to work and contribute to society by paying my taxes, which in turn pay for my DLA. I believe that there is a net benefit to society and Government funds in my working as opposed to my not working and claiming unemployment benefits. Rough calculations will show that the net gain to the state of my working is around £5,000 per annum. I will detail that at the end of my statement.

Why am I scared by the introduction of PIP? The qualifying criteria have changed and, despite the years of clear evidence—I do not know how I could have faked my X-rays, and I am sure that the surgeons were not operating for fun—I fear that I will no longer be considered eligible. I can walk a bit on most days and sometimes further than the new limit, but the 20m is a pointless distance. What am I supposed to be able to achieve by walking that distance? On some days, every step is agony, but I keep going and walk the distances that I have to walk between my house and my car and between my car and my workplace.

I can do a bit around the supermarket, although I cannot go shopping as some do, as a leisure activity. I can get around a shop and that is enough—I will pay for that with pain later—but even then, my elderly father carries the shopping for me. Is the fact that I can usually walk 20m, though in pain, supposed to indicate somehow that I can live normally and walk the same distances that non-disabled people can?

My fear is informed by the fight that I had to be awarded DLA in the first place. I was turned down. I appealed; I was awarded it for a year. I reapplied; I was turned down. I appealed; it was awarded for a year. I reapplied; I was turned down. I appealed; it was awarded for three years. Eventually, it was made an indefinite award.

Here I go again. Am I on the same cycle? Some medical conditions will improve, but I am unlikely to grow a new skeleton. Why cannot those of us with indefinite awards and conditions that will not improve just be transferred over to the equivalent PIP status? A lot of time, effort and money will be spent assessing people who it is perfectly obvious will always be entitled to PIP.

It almost seems that I would be better giving up. Should I decide that I cannot handle any of the pain and sit in a wheelchair, doped up with painkillers, for the rest of my life? That does not seem sensible. I would have the added access hassle that that would bring, my health would suffer and society would lose the product of my work and taxes. Surely it is better that I do as much as I possibly can, weighing up for myself the costs and benefits on good and bad days of what I do? One good day I might walk further with my nephew to take him somewhere and then spend a few days in utter agony, but surely that is better than deciding that I can never do anything. Even then, I can achieve only those small things because of my Motability car and my blue badge.

What would my life be like without my DLA or PIP and without my Motability car and blue badge? It would be awful. I would no longer be able to work. I would find it almost impossible to use the public transport from my house to work, because even the walk to or from the bus stop is likely to be too far. Furthermore, if I have to stand and wait, I might not then be able to board the bus. Indeed, standing is worse than walking. There are also timing issues, which would mean an even earlier start in the morning.

Without my car and the allocated parking space I would be almost housebound. That would mean relying on taxis—but how would I pay for them without DLA or working?—and the kindness of others. I would lose my independence—and I am fiercely independent.

I am single, with no children. Who am I supposed to rely on? I could work and pay for a private car, although it is unlikely to be as suitable. However, if I cannot park near enough to my house or my work, what am I supposed to do? Should I say goodbye to socialising as I cannot get close enough to the venue? Should I never do my own shopping if the walk from the car park is more than I can manage?

So I am terrified. I cannot see how my life can continue as it is if I lose my DLA at the higher rate for mobility. Do I think about whether life would be worth it? The honest answer is yes. I have contemplated ending things if I do not receive PIP at the rate that would allow me to continue to have my Motability car and blue badge. For me, it is all or nothing, because I do not qualify for any care payment.

I also fear that those who are making the decisions confuse the fit-to-work tests with the PIP assessment. I am clearly able to work, and I have worked most of my adult life. That does not mean that I am not disabled and that I do not incur additional costs because of that disability or do not need some special arrangements to allow me to live my life.

I am also gravely concerned about the many others in the same situation, who are terrified of losing their benefits and losing hope when they are refused PIP. I fear that there will be an increase in extreme poverty among the disabled, but do not worry, you will not see it, because they will all be stuck indoors. I fear that there will be an increase in suicide among the disabled.

I am lucky—I am literate and able to understand the forms and questions. There are others who the changes will just happen to, who will be too nervous to complain or make a fuss and who will accept that the decision of the state must be correct.

As an experiment, get a pedometer or similar, stand at your front door and then walk 20m. Is that enough to get you where you need to be? Park as normal at the supermarket and walk 20m. Have you even reached the door yet? Does the fact that someone can struggle and walk 20m mean that they do not have a mobility disability? I think not. Surely it is easier for someone in a wheelchair to go further than someone who walks but in pain.

I am one of the hard-working majority, yet I am made to feel like some terrible scrounger or that I am claiming something under false pretences. The stress is awful. Trust me, I would rather not be in pain and not claim DLA or PIP. I live as well as I can and, over the years, have found various ways of making it easier to gauge how much pain something is likely to cause. No one else will realistically be able to measure the pain that I feel, the compromises that I make or the decisions that I take, but the evidence that I am disabled is clear in my medical records.

What should I do? Continue as I am, planning and making decisions based on my knowledge and experience, keep working and contributing; or give up, stop work and be in a wheelchair before the PIP assessment comes along? I know which I want to do and which is best for me and society, but PIP reassessment makes it seem better to go the other way. Unfortunately, one day I may well be wheelchair bound and even less able than I am today. I would rather put that day off as long as I can.

I have calculated what it would cost the state if I did not receive PIP and had to give up work. If I keep getting DLA or PIP, working and, therefore, paying my tax and national insurance, there will be a net gain to the state and taxpayer of around £5,000 per annum, because I pay around £7,800 in tax and national insurance and DLA is just under £3,000 for the year.

If I lose DLA or PIP and have to give up work, there will be a net loss of around £11,500 per annum, which would be significant if I were to work for another 20-odd years. That comes from the loss of approximately £7,800 in tax and national insurance and the payment to me of income support, which would be at least £3,765 at the basic level.

If I could not work because of access issues through loss of DLA—the loss of my blue badge and car—I would presumably receive at least £72.40 per week in benefit, which is more than the cost of providing me with DLA and allowing me to contribute to society. Even looking at it as just swapping DLA for income support and ignoring the tax and national insurance, it is a loss to the state and taxpayer of around £800 per annum. I have given some details in my written submission. Therefore, the net gain to the state is around £5,000 per annum. I understand that that also pays for the NHS and other services.

Being able to walk 20m is not a sufficient criterion to say that I am not disabled and not entitled. I hope that the review helps you in your deliberations and that, somehow, something can be done.

Thank you very much, Moira.

Last June, my husband had a stroke. His recovery has been slow and there have been setbacks.

In December 2014, we started the PIP application process. We completed and submitted the form with help and support from the grapevine disability information service in Edinburgh.

My husband was originally sent a letter asking him to attend a face-to-face assessment for PIP in Dunfermline. We live on the outskirts of Edinburgh and the PIP notes explain that no claimant will be expected to travel more than 90 minutes from their home to an assessment centre.

When we looked into it, we found that it would have taken us around two and a half hours to get from our house to the assessment centre, which would have involved two buses and a train. My husband struggles to use public transport and, in the past, has had to get off buses due to there being too much noise—multiple inputs cause him to be overloaded. Coupled with that is his vulnerability and, if he is in an unfamiliar towns or setting, he is very anxious.

When I asked whether the appointment could be rearranged to a more convenient location, the Department for Work and Pensions would not accept my authority to change it and requested that my husband be present to confirm his agreement and that we call back.

I complained to Atos about it. I was really complaining that it had not followed its own rules. It said that I could not complain, so I phoned the DWP back and complained directly to it. After that, an Atos official got back in touch with me and offered me an appointment at Argyle house in Edinburgh two days before the original appointment.

We made it to the PIP face-to-face assessment. We had to park away from the building. My husband did not want to be dropped off while I parked the car because, as I said, he struggles to deal with new surroundings and people he does not know. We waited and were taken to a room by an assessor.

I felt that the assessor purposely seated me behind the computer screen monitor so that she could not see me, and my husband was seated at the other side of the room. A consequence of stroke can be loss of peripheral vision, so seating the carer of a stroke patient in the peripheral field of vision shows real unawareness.

10:30  

The examination took about 20 minutes in total. My husband was asked a series of questions, and the assessor typed throughout the duration of the appointment. I expected the form, which had taken hours to fill in, to be the basis of the examination, but it was not mentioned. At no time was I asked for any particular feedback, despite my husband being very nervous. He is also affected by a stammer, which impacts on his verbal communication when he is in unfamiliar situations. Again, information in the form was not referred to.

Some of the questions that my husband was asked were not reflective of his ability to manage certain tasks. For example, in relation to managing budgeting decisions, he was asked to subtract seven from 100 and then carry on. He did that very slowly. I have discussed the tests that were carried out, and I have been told by mental health professionals and my husband’s stroke consultant that a mini mental-state test is not a valid way to assess cognitive impairment after a stroke. Equally, working out the change from £5 does not equate with complex financial decisions or transactions. I have had to renegotiate our home and contents insurance after our insurers withdrew cover, to deal with the life insurance provider and to move utilities for a better deal. At the moment, I am dealing with our mortgage lender. My husband cannot deal with that.

When the decision letter was received, my husband was awarded no points for any activity. The assessor described that as

“consistent with your description of a typical day, informal observation at your consultation and the findings of your mental state examination.”

At no point during the PIP face-to-face assessment were the reliability criteria referred to. Those are explicitly set out in the PIP regulations. According to the Social Security (Personal Independence Payment) (Amendment) Regulations 2013, activities must be able to be carried out safely, to an acceptable standard, repeatedly and within a reasonable time period. We do not feel that those criteria were used to assess any activity.

We are now requesting a mandatory reconsideration and have given the specific details of my husband’s impairment and how it impacts on his ability to carry out daily living and mobility activities. The letter was submitted on 17 March but was only logged on the DWP mail system on 30 March. As at today, I have had nothing from the DWP.

The whole process has been extremely upsetting for us. We now face longer delays in the payment of a benefit that is there to provide a safety net. We actually feel like we are begging for the payment. We have paid for this insurance and just want to be treated fairly by the system. I trusted the system. I did not make a fuss at the assessment, because I trusted that we would be awarded what we were entitled to. My husband is not working, because of the effects of a stroke, which has affected him on so many levels. I am the main breadwinner and I have had to take a lot of time off for appointments, using my annual leave to deal with all these matters. I am very glad of the support of third sector charities and services such as grapevine.

Thank you very much.

Finally, we will hear from Mairi MacGregor.

I found that the form did not give as much opportunity to make a case as I would have liked. There were only a few lines to answer each question, which did not allow for someone who has multiple issues with the same task. I have seen the scoring system, and it appears that only one set of points is allocated for each section so, for chronic illnesses such as ME, which I have, where there is a little wrong in a lot of functions, the cumulative effect is missed and the applicant may lose out on benefit that they need compared to someone who has a single clear-cut impairment.

The process of completing the form is draining, and the time allocated does not allow for it to be spread out. I had some of the information needed in an online diary that I had been using for therapeutic purposes, but I still needed to ask for an extension. I ended up printing pages to stick into the form as that was easier than writing it out. Having been denied DLA twice, I went into a lot of detail in the form. I hoped that I would be spared a further physical assessment, having had an employment and support allowance and DLA medical in October 2012 and a DLA tribunal in January 2013, and having gathered as much written evidence as I could to include with the application.

I applied in August 2013 and did not hear anything for months. Eventually I called the DWP in the spring and was advised that the application was with Atos. I called Atos and was told, “It will be soon, you have been waiting a long time.” There was no qualification of how soon “soon” meant.

I got a letter advising of an appointment to have a face-to-face assessment on 28 April. The appointment was in Dundee, despite my request to be seen in Perth due to the additional fatigue and pain that travelling would cause. That request was not even acknowledged, never mind granted. By that point I let it slide and asked a friend to drive me to the appointment, to avoid any further delay in getting a decision. Having been turned down for DLA twice and my income having reduced, I have been barely scraping by, mostly ignoring things that might help me, due to the expense.

The assessment itself seemed to duplicate a lot of what was in the form. The assessor was pleasant and courteous enough, and he had a trainee with him who was also pleasant. The process was explained clearly at the outset. The structure of the interview seemed to be unnecessarily repetitive, first naming each diagnosis, then medications for each diagnosis, then symptoms of each condition and then going through a typical day. All of that information was in the form, and I found that I was repeating things from one section to the next and having to get the assessor to go back and add information to previous sections.

For someone like me with more than one diagnosis and lots of symptoms arising from ME, it was a long-winded process. I was conscious of the assessor trying to move through the list of questions and, as the interview went on and I got more fatigued, I found it hard to keep up. I felt that I had forgotten to put forward a lot of things that might have been helpful. I think that the physical assessment might have been cut short due to the time the other parts had taken.

By that point I was exhausted. The assessor kept telling me not to push myself, but it is difficult not to when you rely on pushing yourself to get through life—and I was in pain before I started. I hope that that will be taken into account. The assessor appeared to be writing what I was telling him, and did not make the mistake of the examining medical practitioner in my previous DLA assessment, at which I was given lots of “advice” and then the report was more of what he had told me than what I had told him. The physical assessment was largely the same in both cases, and for a complex condition such as ME, it does not seem to provide the opportunity to evidence the symptoms enough to justify the energy expended.

I was advised that I should have an answer in six to seven weeks, and that I should contact the DWP after four to five weeks to make sure that it had not lost the form—very confidence inspiring. I then received a letter from Atos, advising me that my assessment had been chosen for audit, which would usually take a few days. Soon after, I got a letter confirming that the audit had been completed.

It would have been helpful to have had updates on the progress of the application—with my DLA applications I received letters apologising for not having made a decision within the target time, but with PIP it appears that, unless you phone and pester, you do not get any information. It is not every day that I feel that I have the energy or the brain power to make a chase-up call.

It is wrong to keep somebody in poverty because of disability, and when it is the best part of a year stuck in a backlog with no information, it is difficult to feel positive about the support available. Even a backdated payment does not make up for months of having to make do, to the detriment of your health. It does not seem to be too much to ask for them to get it done in time and to get it right first time, but apparently it is.

I got my decision a year after I applied, and I had been given only four points for mobility, which is not enough for an award. There was little explanation of how they had reached the scores—just, “She can do X, Y and Z unaided.” I requested further information and was told that I could have a phone call but no further written explanation. The report stated that I had attended the assessment alone, having driven myself there. Not only was that incorrect but further assumptions were made on the basis of it. It was stated that, as I could drive, I could do other activities, for example cooking or showering. I had stated that I could only drive short distances, that it exhausted me and that I only drove because I could not walk far.

I made the mistake of trying to apply for a reconsideration myself. The friend who had attended the medical with me was unwell and I asked for help at various stages from other friends at work but did not give anyone else full responsibility. I ran out of time so, on the advice of a colleague, I telephoned to note my intention to apply for a reconsideration and said that further written information would follow. I specifically asked if there was a deadline and I was told that there was not.

I had been given training handouts on appeals and was advised to point out the evidence for each descriptor. ME symptoms meant that a lot of the points were scored on the reliability tests. For example, I could perhaps do an activity once but not repeat it, or it would take me far too long. That meant describing that for each descriptor too.

A friend at Mindspace Recovery College arranged help from my member of Parliament’s office, which got a copy of the Atos report. The decision letter had been lifted almost verbatim from the Atos report. None of the evidence that I had submitted had been referred to. Even statements in the Atos report that agreed with my evidence were ignored, for example that I walked “very slowly” and had a weak grip.

I contacted my GP surgery for some information. There were changes to my health in the year that it took to get a decision, but I also asked for copies of the information that was submitted to the DWP. I had asked the GP surgery for some evidence when I submitted the form but had been advised to let the DWP request it. When I requested the information for the reconsideration, the GP surgery agreed to reduce the administration charge to £5, which was still a struggle. It looks as though no information was requested by the DWP from the GP surgery.

The decision letter came for the reconsideration before I had a chance to submit the information. It was only three weeks after the original decision but referred to not having received my additional evidence. I contacted my MP’s office again, but the lady who had helped me before was on leave and the person I spoke to said that he thought that it was a reasonable period.

Collating the evidence took longer than I had expected. I had been put off by the pre-emptive reconsideration. During that period a lot had happened, the job was much bigger than I thought, and with no energy and difficulty with concentration, progress was very slow. The submission ended up being massive. By that stage, it was a late appeal.

During that period, I had also been assessed for attention deficit hyperactivity disorder, which was diagnosed in December. Although I had not known about it at the time of the form, I had described the symptoms but put them down to ME brain fog. For me, that explained why activities at work, which had structure and support, were a lot more manageable than activities at home.

The appeal was on 27 March and the panel seemed a lot less hostile than for my DLA tribunal, although the same judge was present. The welfare rights officer thought that it had gone well but was given a letter stating that the same four mobility points that Atos had given me were awarded.

I am awaiting a statement of written reason, but my experience after the DLA tribunal was that there is very little that can be counted as an error in law, which is the only relevant thing left now.

Thanks very much, Mairi, and thanks to all the witnesses. Thank you all for being so generous with your personal information. I am sure that the committee members will want to explore a bit further some of the circumstances that you have outlined to us.

I will kick off by trying to get clarification on your understanding of the process. We have looked at the work capability assessment in the past. Initially, there was a lot of confusion about the role of Atos and the role of the DWP, even to the extent that the DWP was referring to Atos assessments, knowing full well that they were its assessments. I want to get an understanding of your knowledge of the process. You all refer to being assessed by Atos but, in certain parts of Scotland, the process is conducted by Salus. Were any of you assessed by Salus or did you know that it was Atos that was doing the assessments directly?

10:45  

It was Atos.

Okay. I think that there is a geographical split—some parts of the country are covered by Salus and others are covered by Atos.

Regardless of that, whoever carries out the assessment process does so on the basis that the assessments are the work of the Department for Work and Pensions. Did all of you know that that was the situation and that the assessments were the work of the DWP and not Atos?

I have had to phone the DWP and Atos. When you phone the DWP, the people on the other end of the phone are absolutely delightful. When you start to complain, they are very quick to say, “We’ve heard that about Atos.” Atos may be doing the DWP’s bidding, but I think that the DWP takes great comfort from the fact that it is not doing the work. That gives DWP staff an opportunity to distance themselves and to be extremely nice on the phone, because they are not responsible.

We have heard that before. That confirms the understanding that we have built up of the process and how it is being conducted.

In previous investigations, we discovered that additional information that is sought by Atos from doctors is not always provided. In your circumstances, did Atos ask for additional information from your doctors? Was it provided?

It said on the forms that information would be asked for, and my doctors and my rehab team produced reports once my case reached the reconsideration part of the process. They produced the reports in time for the original assessment, but the person who carried out that assessment did not have any of the reports in front of them. When the reconsideration came back, it was stated that no further medical reports had been provided, yet I knew that reports had been provided, because my rehab team had given me the reports that it had written. Even though I knew that they had been written and submitted, I was told that the assessors did not have anything.

That is an interesting and important point. Was that the same for everyone else?

My GP surgery was not asked for information. It had provided information for the two DLA applications that I had done and it had given me copies of the forms that it had completed, but it was not asked for anything. I got information from elsewhere. I go to Mindspace Recovery College, and I asked it to do a letter, which I submitted with the form. I also asked various other people for evidence, which was sent in with the form, but the decision was based solely on the assessment.

We submitted quite a few consultant letters about the condition, and we gave the names of various health professionals, including a stroke nurse, who was perfectly willing to provide information, and a clinical neurologist, but they were not approached for information.

So neither your GP nor any of the people you identified were contacted.

No, they were never contacted.

Do you have any information on that, Moira?

I have not gone through the PIP process, but I know from the DLA days that it took a while. Sometimes additional information was asked for and sometimes it was not.

That is helpful.

I will open up the session to committee members, beginning with Kevin Stewart.

Mairi, you said in your evidence that, although you had some difficulties at work, your activities at work were more structured. Are you still working?

Yes. I was off sick for a year, then I returned on a part-time basis. I work for a citizens advice bureau, so I have been very lucky with the support that I get. If it was not for that, I would not be working.

Moira, you are still at work. As you have stated, if your payment was withdrawn, you would not be working, which would result in additional cost to the state.

Yes.

Do you think that any of this is logical in any way, shape or form?

The simple answer is no. It makes no sense to block my way to work when I can contribute.

This situation seems to be worrying a lot of folk who are currently living the independent life that you say you are living in terms of still being able to work. Do you have any shared experiences with others who are in the same boat as you? Do you go to a support group?

No, I do not. I have not felt that I have needed to do that, because my family and friends around me are very supportive, and they have a good understanding of what is going on. For example, my aunt, who is now getting elderly, has been very helpful over the years. She used to be an auxiliary nurse in an orthopaedics ward, and she understood things completely. When I came out of surgery and had to get my elastic stockings put on, she came round every morning to do that for me. I have had a lot of support from family and friends in that way.

Lindsay, did your husband work up until he had his stroke?

Yes, absolutely. He worked for the local authority, and he still technically works for it—he is signed off sick at the moment. We are coming up to the year for that, and there has been improvement. I was hoping that PIP was a mechanism for him to go back to work on reduced hours—that would certainly help. At the moment, we are still very much up in the air.

He has worked for at least the past 20 years. At 52, he hopes to continue working.

So, basically, he is still working.

Technically he is, yes.

Mrs Arnott, you were in work until your accident, too.

Yes, I was in work. My employers were very good, as they gave me time off and allowed me to come back on a trial basis. I worked for the NHS in an orthopaedic ward. I worked on my own, because I did weekends, so I was the only physiotherapist in the ward. After two years and a couple of failed attempts at getting back, it was deemed not to be possible to hold the job for me any longer, so I was medically retired. However, I still have my own practice. I cannot do much hands-on work in that, but I have tried to keep going, just so that I have something to go to by way of work.

So you went back, you struggled a wee bit and, eventually, you were retired on medical grounds.

Yes.

But you are still actively trying to work.

Yes. I am sub-contracted to carry out blue badge assessments one day a week. I can manage that, because it is done on a form. There are questions on the form that I have to go through and ask people, and I use a bit of my physio knowledge so that, if someone has a particular condition, I try to question them on that line, rather than just sticking completely to the form.

I went into the assessment that I had for the PIP with the expectation that it would be handled in a similar way to the way that I do the blue badge assessments.

I still do one day a week. I cannot really do more than one or two days’ work a week.

Unfortunately, we have seen in the press, coming from the mouths of some politicians, a division between strivers and skivers. From what I hear here, you would all fit into the striver category without a doubt. Would you say that? What do you feel about that use of language and that scenario? I think that it was Lindsay Souter who described the process as being almost like begging, after putting into the state over a period. How do you feel about all of that, Lindsay?

It is picking easy targets and it is divisive. It demonises a section of society and it is wrong, obviously. It upsets me and angers me in equal measure.

Is that extremely upsetting for your husband, particularly in the situation that he is in?

It is. He feels that I have pushed him into performing like a monkey at one of these assessments. I feel that we pay our national insurance, which is for the hard times, and we should definitely be getting a little help back. He, of course, after seeing the press and television, went very much with the attitude: “I am doing this for you but I will not get this award.” It is true—he has not got the award and the experience has made things between us difficult. I did not need that, thank you—it has not been helpful.

I thought that the benefit system would catch me if I fell. I have worked full time since I was 17—I did not even have much of a maternity leave break when I had my daughter 23 years ago. Claiming some sort of benefit is new to us, but going in with the attitude that we were not going to get anything was not helpful. Going in with the attitude that I was making him do it did not help matters either.

You are saying that there was a lot of strain because of the system that is in place at the moment.

Absolutely.

It is offensive. Everybody here has given a story of how they want to use benefit to keep going, not to retire on it and have an easy life. All that we hear in the press and the media is about how people claiming benefits are “at it”—they are taking money out of hard-working people’s pockets and doing nothing while others are working away. It is just not true.

In the application process, it definitely feels as though that is the point of view that assessors start from. Everybody who applies for PIP is disabled. They are assessed on whether they are disabled according to the criteria that are in place, but people apply for it because they are disabled. The assessors do not treat the process like that. They treat it as though everybody is trying to pull the wool over somebody’s eyes and get something for nothing or something that they are not entitled to.

Mairi, you obviously have some experience from working at a citizens advice bureau. The folks I have met who have had difficulties and have DLA or PIP have been using it either to stay in work and keep their independence or to allow another family member to go to work, which they would not be able to do if the claimant did not have the DLA or PIP. Have you come across that in the citizens advice bureau as well?

Yes, quite a lot. I deal with debt rather than benefits, but a lot of the clients that I deal with are in debt over rent arrears rather than having consumer debts, and that is because they do not have enough income to live on.

A lot of people have been put off applying for PIP altogether. I see people with invisible illnesses such as the one that I have—autoimmune diseases—where they can do a little bit on one day, but if they do it one day they cannot do it the next. A lot of them either have not applied at all, because they know that they will not get the benefit, or they have applied and not got it.

Many people are turning to self-employment as a way to try to work around their condition, as they might not have the option of an understanding employer. A lot of people in that situation are not earning enough to live on. They are doing more than they should and their health is deteriorating, but they have to keep going.

Do you feel that, at the assessments that you have had, you have been listened to in any way, shape or form? Do you think that some of the folks who have carried out the assessments actually understand the situations that you find yourself in? For example, on the ability to walk 20m, other witnesses have said, “Yeah, I could walk 20m, but for the next week I’m completely out of action.” Do these folk understand that the 20m is absolute nonsense? As you said, Moira, where does that take us anyway? What does it prove?

11:00  

I have not been assessed on that yet. However, 20m is not a logical distance. I do not know what the distance is. Whether it is 20m or 50m, if there is medical evidence of a disability, I do not see that the distance is relevant. If I am in pain after one step, I am in pain after 100 steps, and I will pay for it more tomorrow.

You have all experienced the assessment in some shape or form. Do you think that it is in any way useful in coming up with a reason why you should or should not get a payment?

It is very arbitrary. In my husband’s case, there should really have been a proper cognitive assessment by a qualified professional. As I said, they used the mini mental-state test, which is for somebody who might have concussion or Alzheimer’s. It is not a valid way to test cognitive impairments or even a learning difficulty. They are not decent tests for what they are testing for. They seem to use the same test for every person. How can that possibly be right?

I agree. I would, I hope, pass the cognitive assessment quite well. I will not get any points for that, which is fair. However, that does not detract from the fact that I have a disability and other complications. We talked about the skiver and striver idea. There are skivers. There always will be and there always have been, and they are easy to get some evidence on. The problem is that no one looks for all of us, because we are at work.

In the mobility part of the test, we were talking about supermarkets and I told the assessor that I go to a Farmfoods near me because it is small and I can get most of what I need in one aisle. We likened the length that I would walk of the aisle to the size of the room. The assessment is set up so that, when you come into reception, there is a walk between there and the assessment room. It means that they can look at you walking. I think that they had me walk 10m, and they commented that I walked very slowly. I could not finish the physical assessment, because I was too fatigued and in pain by then, yet, somehow, I am told that I can walk 40m or 50m. There was no qualification of that and no consideration of the other evidence. It is an act of tokenism. They are saying, “We consider that you can walk that amount and we’ve assessed it. It’s not up for debate any more.” I have a blue badge, which I got as a result of my physical condition rather than through the benefit route. For that, I am virtually unable to walk but, miraculously, for benefit purposes, I can walk 50m and everything is fine.

I had the cognitive assessment that was mentioned where you have to count back in sevens from 100. At the time of the assessment, I did not know that I had ADHD but, during other parts of the assessment, I described difficulties with executive function—things like planning journeys and budgeting. I explained how that has an effect on me. Given the work that I do, I have specialist knowledge in budgeting, but if you take away the structure of being at work, it can be quite different. The assessor did not take that evidence into account. They ticked the box and they did the assessment. I passed that and I could do anything.

I was wearing a hat, so they said, “If you can get your arms over your head, you can cook a meal and have a shower every day.” The reliability tests are supposed to say, in the law, how often you can do something, how well you can do it and how much energy you have left after having done it. However, that is not taken into account at all. Most of my case is based around those reliability tests, because I can maybe do something on one day but would then be exhausted and could not repeat it. No reference was made to those tests at all.

I do not remember very much about the assessment itself. I just remember that it was quite a scary prospect to go through it. I know from what my dad said that I did different tests, like the ones that the other ladies were talking about, such as on counting and money.

When I got my award, it still said that I had no significant cognitive impairment. For me, it is the cognitive impairment that is the hardest to live with. It completely disrupts my life. I struggle with physical activities such as making a meal, but those activities are not the real problem for me. My problem is that I forget to pick up my kids from school. I forget to take them somewhere, or I start to take them somewhere and they tell me that I have not remembered to bring something into the plan that day or I have forgotten that we need to take a particular step. I miss out steps in a recipe and the food goes wrong.

There are so many higher brain functions that I scored zero for. Even though I appealed the assessment and got the award, it still stated that I had no significant cognitive impairment. I had extensive cognitive tests done by my rehab team, and I had a report produced and took that to my assessment. The report was by professional people who knew what they were doing. However, the assessment still stated that I had no cognitive impairment.

As the other ladies are saying, I could perhaps do each of the things that the assessor asked me to do once, but only once. I could lift my arm or my leg up. I am a physiotherapist and I pushed myself really hard to get my strength back, even though I have great difficulty with one side of the body. The assessor just put a finger on my leg and asked if I could lift against that. There was nothing thorough in the process.

My father talked to the assessor all the time during the assessment but when the report came none of what had been said in the room was mentioned in it. In October, we asked for the assessor’s report, as we are allowed to do, but we still have not got it.

I feel that it is not a fit assessment process, and the way that my assessment was done was certainly very cold and clinical. I am really anxious anyway, and meeting a new person immediately makes things very difficult for me. The assessor went off at speed and we were trying to keep up with him. At that time, six months ago, I found that very difficult to do.

The assessor was going to take us up stairs, but my dad said that I would not manage that and that we had to go in the lift. The assessor was not happy with that. He did not want my mum and dad in the room. He kept asking me why I needed my parents there.

I felt that I was doing something wrong in being there and asking for the assessment. I would not have done it if the rehab team had not pushed me to do it. I put it off for a whole year, thinking that I would be going back to work.

Thank you.

Yes, thank you all.

We move to questions from Annabel Goldie.

Thank you very much for your frankness.

Alison Arnott mentioned the process not being client-friendly. I am aware from reading all your submissions that your experiences have included practical difficulties—for example, Mairi MacGregor wanted to be interviewed in Perth but had to go to Dundee, and Lindsay Souter had to challenge the expectation that she would go to Dunfermline and was eventually interviewed in Edinburgh.

Was the location for the interview an issue for you, Mrs Arnott, or were you able to be seen where it suited you?

I was seen in Stirling, which is not that far away, but I had never driven to Stirling so my parents took me. I was given a 9 o’clock appointment. I have four young children who need to be at school at 9 o’clock, and my parents were coming from Dundee to pick me up, but the assessors would not change the appointment to a later time in the day.

They would not change it despite that information being provided.

No, they would not. Although the appointment was close to me, in Stirling, it was still not as convenient as it could have been.

Okay.

I add that Alison’s assessment was done at Springkerse, which is on the outskirts of Stirling and not near the centre, so accessing it by public transport is not possible. The centre’s remoteness from Stirling was another factor.

My friend, who had her assessment in the same week as my husband, lives in the same place as me but was offered an appointment in North Berwick. To get there from where we live is impossible. It would have meant getting a bus into town, to Waverley station, then getting a train out to North Berwick. I do not know how we were supposed to get to the assessment centre from the station there.

Convener, does anyone know how the appointment and interview system works?

As we discussed with the clerks, we want to try today to establish some of the issues, and that is clearly one of them. We have agreed to invite Atos and Salus to come before us. I am not sure where we are with that, but a discussion has taken place. If we can establish the issues, we will be able to put them to the organisations in due course.

I have two more specific questions. I was struck by what Moira Sinclair said in evidence. I read your submission: I have a lot of sympathy with you, as I have experience of some of what you suffer from—not least back spasm and the arthritic condition. Is your impression of the DWP criteria that they are absolutes? You have explained that on one morning—even if the test was meaningful—you might be able to walk 20m, but on the next you would not; you would probably spend three hours getting dressed and then crawl to the car to get to your place of work.

That is not an unusual scenario.

Some mornings you might not even manage that.

Yes. I am lucky that the nature of my job and my understanding employer mean that I can occasionally phone up and say that I will work from home that day.

Is that because you cannot physically get out of the house?

Yes. I do not do it often, though.

Do you feel that the criteria are absolute and that there is not enough flexibility?

There is no understanding of changing conditions and there seems to be no understanding that although people might be able to manage to do a thing, that does not mean that doing it is easy, and they manage it because they are forcing themselves to do it.

I understand. Also, you might manage a trip to the supermarket but be in considerable pain the following day.

My routine is that I go to the supermarket with my father because I cannot carry stuff—that just adds to the pain. We go to a particular place and I say, “We need that, that and that.” Wandering up and down is not for me. We drive home and he carries all the shopping into the house. I get into the house and sit down and he makes me a hot-water bottle. I get my foot up on a stool and that is it: I am there and I do not move for the rest of the day.

So, for someone with your condition, the inflexible nature of the criteria mean that no proper picture is gained of what life is like for you.

There is no picture of my life at all. As I say in my submission, the evidence is there. My bones’ condition shows up on x-rays: I have had surgery several times—which was not done for amusement—but that seems not to be considered, so if I can drag myself 20m to do something, that will be enough and I will no longer be eligible.

11:15  

What has struck me from the submissions is the absolutely pointless bureaucracy. If a person has a diagnosed condition, the consequence of which is very restricted—and increasingly restricted—mobility, what on earth is the point of having to go back for further assessments and interviews?

Also, the assessments and interviews are carried out by people who are unqualified to comment on such conditions.

As you so pointedly said, surgeons did not make up the operations; your X-rays are there to see.

I am not going to grow a new skeleton; it will only deteriorate further. I have been through all the appeals for DLA and have got to the point of having an indefinite award, but I am now back at the beginning of the process, although nothing in my condition has changed.

Assuming that you satisfy the new criteria for PIP, you have the prospect of revisiting the assessment, which is very worrying and disruptive.

I do not think that I will get PIP—I have no expectation that it will be awarded to me. I will certainly appeal such a decision and I will put in all my evidence, but if they stick to asking whether I can drag myself 20m, I will not qualify.

You would be entitled to say, “Now and again I can drag myself 20m, but in between I cannae drag myself anywhere”, but the criteria are unable to pick up on that because of their inflexibility.

You said that your status is a passport for a blue badge. This is a question of fact to which I do not know the answer. Is PIP a passport to a blue badge?

People at the highest level of award for mobility automatically qualify for a blue badge. However, they still have to fill in an application form for a blue badge. Every day that I work I see people who are worried that they have not written the right information on the form. It is the same sort of system, only slightly better.

I am aware of people who are on DLA who would be entitled to a blue badge but have never applied for one.

With your indulgence, convener, I have a final question.

We have listened to what you have all encountered and to Alison Arnott’s general point about the process not being client friendly. Despite the hugely detailed nature of the forms, is it your impression that there was, once you got into an interview, a disconnect between the information that you had provided on the form and the questions that you were asked? Witnesses have, in some cases, felt obvious frustration that the information that they provided in forms and in interviews did not get through the filter and into the final report.

For the record, the witnesses are acknowledging their agreement.

My impression was that the assessor had probably read through the form but then started off the interview on a clean sheet. The information that he put into the computer went right back to the very beginning. All the information—for example, on Alison’s medication—had to be fed into the computer. There is no link between the form and the interview. The assessor showed, in the way that he treated her, no recognition of Alison’s condition: there was no recognition that she had difficulty with memory or anything else. It was all ignored. It was just cold.

You would have expected that the information that you provided would be the bedrock for the interview, and that questions could be asked on the issues that were highlighted in the form.

Yes, very much so.

I thank the witnesses for taking the time to speak to us today; I have found the session to be very informative.

My first question is addressed to Norman Gray and Alison Arnott. You talked about how Alison’s appeal failed and you told Atos that you were going to a tribunal. Then you heard that Atos had changed its mind. That came across as being almost arbitrary. Have you any idea what made it change its mind?

I have no idea. We were literally a week away from the tribunal date when I got a letter. I also got a letter in March—my occupational therapist was with me and witnessed it—saying that I had got a Christmas bonus as part of my award for PIP, but I was thinking “I don’t have an award for PIP.” The day after that I got a letter saying that the decision had been made not to go to a tribunal and that I was to get the full PIP that I had applied for.

There would have been an opportunity to do that much earlier because the evidence, including what you submitted for your appeal, was very extensive, was it not?

Yes. By that time I was absolutely worked up and was totally frightened of going to the appeal. I did not know what I was going to do when I got there. I did not want to go; I just wanted it all to be over and to not have to bother any more. Being as worked up as I was and then getting that letter meant that I did not know whether to laugh or cry. I did not really understand the letter. I had to phone to ask, “Is this right—because it just came in the post?” I am scared about what will be in the post, as it is; that is one of the things that has happened. To get all those letters and then to find out at the end that they were giving the award to me anyway was a bit pointless.

They put you through all that stress, but you were entitled all along. I imagine that, because of the kind of person you are, you want to move on, but have you given any thought to trying to find out what made them change their mind so arbitrarily?

Yes. I have asked for the assessor’s report from my original assessment. I had a welfare officer helping me because there was no way I could do the form myself. He asked for information as well because he was handling my case for the tribunal, but he was given none and was told only that my case had been withdrawn from the tribunal day. So, we do not know.

This point is for the whole panel. The issue of appeals obviously comes up a lot. We know from national statistics that quite often Atos decisions are overturned on appeal. I think that Moira Sinclair said that three times—

There were more—it goes back to the time of DLA. I would be told that I had not got DLA, but I would appeal and get it for a year, then I would apply again, not get it, then appeal and get it for another year. That went on. I had four or five one-year awards, then two or three three-year awards. Then they eventually gave me my indefinite award.

I assume that between those different assessments and appeals your disability was the same.

My condition was deteriorating, if anything.

Yes. Do you sometimes get the impression that people are working to targets and that it is only by pushing them on appeal that they then arbitrarily change their decision?

Yes. It was certainly my view as I went through the DLA process that they just automatically discount everyone in the hope that that will knock off a certain percentage who will not appeal, then they will carry on like that.

What comes across from your experience—I know that my colleagues have brought this up—is the disregarding, almost, of medical evidence. However, my understanding from briefings on what PIP is supposed to be is that at the heart of the matter is that medical evidence is not supposed to inform PIP, because it is supposed to be not about the condition but about what someone can actually do.

We had evidence from the chap who was appointed by the Government to review how PIP assessments were being done, and he was keen to ensure that the assessments are not seen as medical assessments. I suppose if they are done by a non-medic and that non-medic is not taking into account the medical evidence because that is not what PIP is supposed to be about, given the legislation, that really questions the legislation itself and not the way in which it is being implemented and the day-to-day assessments. At the heart of its philosophy, the legislation is flawed because it ignores the medical condition and says that it is not relevant. What do you think of that?

I had great hopes for PIP because, having been turned down for DLA twice, I thought that the points system would mean that there was not the flexibility that would allow people to decide arbitrarily one way or another, and that there would instead be a format for making decisions. When I was given the training information from work to do my reconsideration, I thought that the reliability tests were built into law. It looks as if that was put in to take a lot of case law out of the equation rather than anything else. There has been a lot of case law in relation to DLA and the Government wanted to pre-empt that.

If the system were applied as it is written, the workings would catch most disabilities. The low rate being taken out has probably made a big difference. People at that level either have to be more disabled or their disabilities are just ignored altogether, so a lot of people fall through the gap.

There are issues to do with the levels at which the tests are set; some of those levels need to be changed. We have talked about the mobility distance, for instance. A points-scoring system with different levels of inability—scoring two points if you need an aid to do something, for example, and more if you need somebody to do it for you—could result in fair assessments, if it was applied based on what was written. However, there seems to be another agenda that is using the system to avoid considering other evidence, whether it is medical evidence or evidence from carers who say, “I do this for this person because they are not able to do it.” It just seems to be an act of tokenism again. The assessors say that they have done a full assessment because they have done all that stuff, but actually they are bypassing a lot of support for people.

I would like to know what Lindsay Souter thinks? Your husband has had a stroke and you have had lots of help from the medical professionals who are supporting him, but the process for assessing him has been demedicalised.

It has, but the assessment also ignored the reliability criteria. We were saying, as people with any kind of condition say, that he may be able to do a thing today, but he will pay for it tomorrow. Someone who needs to manage medication by putting it in a big box with days and times, who has to set alerts on phones and iPads, or who has to be prompted to do something, is using an aid to take their medication. That should score two points for aids and adaptations. My husband scored zero, but he uses all those things. We stated on the form that we used them, but the form was ignored.

What we should have said was, “No. Stop what you’re doing and let’s go through the form page by page,” but people do not do that: you go in and the assessors are in control. You sit where you are told to sit and speak when you are spoken to. I do not go into meetings like that every day, so I was totally on the back foot. For people with any sort of condition, it causes anxiety. I do not want to go in as a carer with all guns blazing, making a fuss, because that is not going to help anybody, but sometimes I think that that is exactly what I should have done and that they should have remembered me in that room until their dying day. I feel really guilty that I did not help in that room during the process, but I was trusting.

I return to the point about medical information. It is important that that information be made available, because it informs the whole process of assessing what state the person is in and what he or she is capable, or incapable, of doing. Why go back and doubt a professional’s opinion about what that person can do or cannot do? It was clear in Alison’s case that she had right-side weakness, so why test it when it has been medically proven to be so? It is the same with her head injury. If they had accepted medical evidence about her problems, she would not have had to deal with the cognitive test and all the upset that came from that. The medical evidence should inform the process. The diagnosis does not matter, but the medical evidence gives information about how a person’s condition impinges on their daily life, and that is most important.

11:30  

Before I come to Clare Adamson, I will abuse my position as convener and come back to something that Moira Sinclair said. You mentioned the perception that a DLA application was automatically rejected at first to test the applicant’s determination to come back again. I have heard the suggestion before—indeed, I have heard it personally through a family experience—and it is something that goes back decades. It is certainly not recent. When did you first apply for DLA?

I was about halfway through university, so it probably would have been about 1990. I have been going through the process for a while.

We are talking about welfare reform, but clearly that is an aspect that has not been reformed in the intervening decades. I just wanted to clarify the point, because it is important to understand that, with the move from DLA to PIP, the problems that people had with DLA do not appear to have been rectified by the transformation to a new system.

A lot of the points that I wanted to make have already been covered, but I just want to say that I am pleased that the witnesses have come in to put their evidence on the record. My main concern about all of this is that the whole system is dehumanising. Mairi MacGregor said that she was made to feel as if she was just after an easy life; after today, anyone who thinks that any of you has an easy life will have been put right on that.

I am greatly concerned about what you have said about how the system made you feel. Mrs Arnott talked about her professional judgment as a health professional in her own area. The fundamental question is whether you think that any of this is necessary. Given the complexities of the conditions involved, should your medical practitioner have the final say?

The process is completely unnecessary. I still have to go through the PIP process, but given that I expect to be turned down, I see no point in it. I have an indefinite award and we have gathered all the medical evidence. Everything is there, so why bother with the time, effort and expense of going through it all again?

Even if I were to get PIP, I might have to do it all again every year or every three years. It adds to all our burdens, what with everything else that we are trying to do. It seems so unnecessary. I have been assessed many times; given that nothing is going to change, why reassess me? I understand that there are temporary awards, but with those who have fought to get an indefinite award, someone has made the judgment that the medical evidence has been considered and the condition is unlikely to improve. Why drag us all through the process again? It is pointless.

I am worried, because the things that I feel I have the main problems with—and which we now know will not get better—are the cognitive things. The physical side of things is improving bit by bit. To be honest, I think that the points element of the assessment focused on the physical rather than the cognitive aspects. I got my award for a year—it finishes around about October—and I feel that my real problems will still be there, while the problems that it was deemed I had might not be. Will I not qualify because of that? It is a big worry.

Because the assessment focused on the physical aspects, I am scared to walk properly, get out of a car or even go to the cinema with my kids when I am out and about just in case somebody thinks that I should not have got my award. However, I have a lot of problems that have never been recognised. For those with a permanent condition, this process is neither fair nor necessary—especially money-wise, given that it requires to be funded.

When I do blue badge assessments, if someone with a chronic condition qualifies for a badge at the time of the assessment, I will always put on the form that I do not think that there is any need to reassess them, because the condition is never going to improve and is only going to stay the same or get worse. A similar system for PIP and the welfare system would help a lot of people, and it would also mean that only the people who needed to be assessed would be. Someone who has had an operation, for example, can get better and so they need to be assessed again.

It feels like an exercise in jumping through hoops, rather than anything else.

I have had ME for about five or six years, and I hope to recover from it. After all, it is a condition that people can recover from. Getting support to do things to help my condition would probably help me to recover and would mean that I would not need to claim again.

Having been through the assessments three times, twice with DLA and once with PIP, I am exhausted. It is not just the assessment, the form filling or having to go to the tribunal, but the fact that for the whole 18 months that the PIP application has been running, I have been fixating on every little thing that I have had a problem with. Every time I have overdone it and paid for it, I think, “That would be a good example to remember to mention at appeal.” It dominates your brain. For months, I have been looking for the postie coming, wondering whether there will be a brown envelope with a decision in it.

I am quite lucky—I have a lot of support. Working where I do, I have a lot of knowledge that I would not otherwise have. However, for someone who does not have that support, going through that process could have a really big effect and could make them not want to apply. In fact, I think that part of the aim is to discourage people to the point that they find a way to cope without it or convince themselves that they do not need it and are not entitled to it, so they just do not bother.

It is a Kafkaesque nightmare. When I got the letter saying, “Get yourself to Dunfermline”, I should have just seen that and said, “Oh, this is how we’re going to play it”—but I did not. We are still trauchling on with this.

Thank you so much for sharing as much as you have done this morning. The convener has asked us to focus on things that we can pick up in our later evidence sessions, and I want to raise a couple of issues that have come out of what you have said this morning. The first is the time taken for assessment decisions, and Mairi MacGregor has given us a very vivid description of that delay. What has been the financial impact on your household bills or your ability to attend medical appointments or take up therapies? Does waiting for the decision have a huge impact on the things that could make life a bit easier for you?

I have a bit of a time bomb. I was very lucky to get my dad’s old car when he replaced it, but I cannot afford to keep it on the road. It is 14 years old, and it is my only way of getting about. I have my blue badge and I basically drive the distances that I used to walk. I have a bus pass, but the bus stop is too far away for me to use the bus regularly. I have just had to do a lot of work on the car to get it past its MOT and I had to go to my mum and dad and ask them to help out. Not everyone has a mum and dad who can do that.

I used to go to the health suite at my local swimming pool, because the sauna helped with the pain, but I just cannot afford to do that now. As for physiotherapy, I was trying some paced exercise to try to keep my strength up; that helped for a little while but, again, I cannot afford to do that.

I used to have someone come in to prepare vegetables for me, but I no longer have any help around the house, because I cannot afford it. As a result, I am using all my energy to get myself fit to go to work, do my job and come home again. I do not have the energy for therapeutic activity, and I do not have the money for alternative therapies or supplements that might help.

It all means that I am kind of stuck. I think that I would be able to pull myself out of it a little better if I could get all the support in place, focus my energy on the things that only I can do and get a bit of help. For example, I have friends who help out with walking my dogs; I get a dog walker once a week when my friend cannot do it, but my friend does it for me the rest of the week. I cannot even afford to take him out for lunch to say thanks. I want my friends to be my friends, but everything has to rotate around my care needs. It would be nice for that to be taken care of and for me to be able to enjoy their company instead of making demands on them all the time.

And it would help you to recover.

Yes.

I know that Lindsay Souter has said that her husband is still technically in work, but he will be on half pay now.

That is right.

So any length of time spent waiting for a decision might well have a huge impact on your ability to, say, heat your house.

Yes. In fact, I just got a gas bill. Scottish Gas wants to put my payment up to quite a substantial amount, because my husband has been in the house 24/7 since the stroke happened.

Because both of us have worked in reasonably well-paid jobs for the local authority, I have been able to do all the complex financial things that apparently my husband can manage with aplomb. I have managed to move between suppliers of things and get much better deals with various insurers. I will try to renegotiate our mortgage with the bank, but of course that is only an interim measure.

A PIP award helps people to plan better because they know that it is coming in. At the moment, I am firefighting. We are not in any bother, but we are definitely firefighting. As I have said, my daughter is at university, and there is a lot of expense. We would choose to help our children out from the bank of mum and dad; I am doing what I can and cutting costs here and there, but I really do not know how long that can go on.

Maybe Alison Arnott has some understanding of that. Mairi MacGregor touched on the matter. There is all the waiting for assessments and decisions, and the anxiety and stress that go with that. Alison Arnott mentioned her medical rehab team. Has it talked about the impact of that on your sustained recovery?

Yes. The team has treated me a lot for stress and anxiety. A lot of my recent rehab has been for that. Things such as getting a refusal letter have put me back a month. I had to get myself back to the point that I was at before. I would then get another letter through and be away back to what I was. It has been hard to get myself out of that low dip.

There is also the fact that I was not really earning anything. I was on the usual thing for a year. I had pay and then half pay, but thereafter I was on a year of unpaid leave from my NHS job. Although I had my own practice, I was paying people to run it and not making anything at all. I felt pressure because I could no longer contribute. My wages were for the things that the girls did and my husband paid the bills. It has only been because of family members, for example, that my daughters have been able to continue their activities, which are important. The accident has had a big impact on them.

Until I got my award, the team wanted me to go to a gym programme, which was fine, but I had to pay for it. I have to pay for a gym membership to go to the rehab programme that the team wants me to go to. I am now going and am feeling the benefit of that. That is because I do not feel guilty any more, because I now have the award. I can justify doing that because I am getting that money. I could not take that out of my budget for my girls, because it would not be fair if the money was for me. That really held things up. I do not feel that I made as much physical progress for a year as I could have done. It has been hard.

11:45  

Moira Sinclair painted a vivid picture of how the situation can bring someone to a point at which they feel so low. What impact does that have? You said that it sometimes takes a few hours in the morning to pull yourself together. If you are already feeling really low, how much more difficult is it for you to do that?

That is always at the back of my head. I have not hit that point yet, but every day I get that bit closer. There is a fear of what might happen.

If I am turned down for PIP, I will—even though I would appeal the decision—be in a situation in which my DLA has been stopped, and within so many weeks people will come and take the Motability car away. What will I do then? I will have no award and no car—how will I get to work the next day? For how long will my employer let that situation slide on before I do not have a job? How long will it be after that before I cannot pay the mortgage or put food on the table? That is always the worry at the back of my head. Even if I appealed and got PIP, so much of my life could have changed almost irreversibly in the intervening time. It is terrifying.

As I said, I am single: it is just me. My dad lives with me, but am I going to make my elderly dad—who has survived cancer and has looked after me—homeless because I cannot work and cannot get a car and so on? It all rolls up. That might seem hugely dramatic, but going through my head are the potential implications and the fear of all that.

I have a couple of points. One thing that struck me concerns the parts of the assessment that are unnecessary based on the individual. The key element that seems to be missing from the personal independence payment is the personal part. For example, Lindsay Souter’s husband was asked to take part in bits of the assessment that would not give an insight, while other parts involving medical records were ignored.

At any point, did any assessor tell you what their qualifications were or whether they were trained in specific means of assessment? Alison Arnott mentioned inappropriate cognitive assessments and the question whether assessments should be done by a professional.

Given your experience, it strikes me that we should investigate the level of training that the assessors have had. Did any assessor tell you what their qualifications were?

I never even got my assessor’s name.

I thought that my assessor was a doctor, but when I got the report it said that he was a nurse.

I had an employment and support allowance assessment previously, which was done by a nurse as well. However, she seemed to have a real understanding, and she asked questions along the right lines. She did not do the physical assessment at all, because she said, “You might be able to do it now, but you might not be able to do it another day, so it’s meaningless.” Quite a lot about how to do the assessment seems to be left up to the assessor.

From my experience at work and from speaking to people, it seems that the ones who have a good assessment get the award, whereas the ones who do not have a good assessment do not get it. My experience was that the decision was basically written by the nurse—whatever his medical background was, he certainly did not have a benefits background. He was definitely not qualified to do something that somebody in the DWP just rubber-stamped without looking at anything else.

In Mrs Arnott’s case, the assessor said that he had some form of qualification—I am not sure what it was; it might have been a nursing qualification—but he said that just as he sat down, before he had introduced himself. It was said almost in passing, as if it did not mean anything at all. I did not pick up what his qualification was. He tried to justify his assessment by referring to his qualification, but he was not saying, “This is something that’s important for you.” Mrs Arnott never got the information at all, and that is the most important point. She should have known what his qualification was.

Did Moira Sinclair experience the same sort of thing?

I have not had the reassessment yet.

I have a final question that I must ask all of you. Lindsay Souter’s husband has had a stroke, Mairi MacGregor and Moira Sinclair have long-term conditions and Alison Arnott has had an accident. At such times in your lives, you need to be able to trust the system to look after you. Does any of you trust the system?

No.

No.

No.

Absolutely not.

The answer is no, yet one of the most important things is that people trust the system.

I thank all the witnesses for coming along and for being so frank with us. Lots of questions have been asked, but I will cover a couple of matters that we have not touched on. How difficult is it to go through a mandatory reconsideration? How do you find out what happens next? You are assessed, but what advice are you given if you are unhappy with a decision, if you are refused an award or if you are not happy with the level of disability that you have been acknowledged as having? How available is that information?

Atos gives people a three or four-page decision letter. I think that the deadline for the reconsideration is buried somewhere on page 3. Most people would look to see what the answer was and perhaps look for a justification of the decision, but the information does not jump out at you.

I knew a bit more than most people, because of my friends at work. Even then, it was a last-minute operation. I had to phone in just to meet the deadline and I was not allowed at that time to submit the information.

I did not get a mandatory reconsideration as such. I got a letter, which let me go on to appeal. The deadline for that appeal is also buried deep in a letter. There is supposed to be a process for the case to go back to reconsideration and for more information to be submitted before the matter goes on to appeal. However, that did not happen in my case. The evidence was not looked at as a mandatory reconsideration; rather, an Atos report that already existed was looked at.

I got information only through the grapevine service, which is part of the charity that helped us to fill in the form in the first place. Atos has had my letter since 30 March. We are still waiting for a response; we are no further forward.

I used my background of taking legislation and putting it into a form that mortals can understand to write the letter. I took all the legislation, especially some of the statutory instruments, and I wrote my letter on the basis that I did not believe that Atos had used the reliability criteria in any of the tests.

I completed my letter. The charity looked at it and said, “Wow! Well done.” We submitted it and that was that. If I had not had that skill set, I would have relied on someone creating the letter for me. I knew to ask for a mandatory reconsideration only because I had had help.

As we have heard, it is difficult for people who are applying to know what is available to them. People also need to know that the support agencies are there. Therefore, it is difficult for people to find out about it all.

A gentleman from the UK Government came along to speak to us. He acknowledged that the decision letters would be looked at. I hope that the information will be easier to notice, so people will see the decision and what follow-on action they can take. We will wait to see whether the decision letters are improved and whether they meet that test.

How difficult is it to get in touch with support agencies? Do you find that, because of everything that has happened with welfare reform, it is more difficult to get an appointment with, for example, a citizens advice bureau, which Mairi MacGregor works with? A couple of years back, people would have been able to pop into a citizens advice bureau and see someone there and then, whereas I believe that people now have to wait for a week or even more, depending on where they are, to get an appointment. Likewise, how difficult is it to get in touch with other agencies that you deal with, such as the grapevine service that Lindsay Souter mentioned?

I have a sneaky backdoor route, because I am friends with benefits advisers, so they helped me as friends rather than with their work hats on. As a debt adviser, I see people who have got into rent arrears and who did not know that the CAB could help them with an application or that benefits were relevant to their situation. I often refer people for a benefits check. Quite a few projects have been funded at Perth CAB for benefits casework, so there has been more help. However, even with all the extra staff, people sometimes wait a couple of weeks for a benefit check appointment.

We allow three hours for a PIP form, and it might take a couple of goes, even at that; sometimes it is done by home visits. People are usually asked when the deadline is and the advisers try to squeeze them in before the deadline. However, not everybody comes straight to the CAB when they get the form. Sometimes people try to fill it in and then come to the CAB only at the deadline or when there is not a lot of time. We then have to go and ask for another form. There definitely is not enough support to meet the need.

Many third sector agencies do not have the capacity that they used to have, because of various changes to how they get their funding. A lot of local authorities have had to make significant cuts to their third-party grants and perhaps housing support contracts with agencies. Some agencies are closing their doors and moving out of areas when they lose funding.

I had to wait to get my appointment, which was fine, and I was really grateful to get it. However, I know that many agencies are gone or do not have sufficient capacity. That has been caused by cuts.

The extra capacity at Perth has been project funded rather than funded through core funding. Next year, that could all be gone and we could be back to one or two people doing all the benefits casework.

What is your experience of the time taken to respond to your applications? There are targets, and responses are supposed to be received within a certain time. How often are those targets met or not met? It seems to take for ever to get a response, which creates additional stress for people.

I sent the DWP a letter on 17 March, but it was not logged on the DWP system until the 30th, and I am still waiting for a response. As for the original PIP application, I have completely forgotten, but I think that we applied in December and we had the face-to-face assessment in February. The DWP might be meeting its targets, but they are not decent targets if it is thought that that is a reasonable time for people to wait.

After completing the form with the citizens advice bureau adviser, I waited for, I think, seven months before I had my face-to-face interview. The timescales were kept to for the reconsideration. In fact, that was quicker—my rehab team said that that would be so that no medical reports were received. After that, it was another three months before I got a date for the tribunal. The whole process took more than a year from start to finish.

That is a long time, in which people can get into financial difficulties, as well as suffering all the stress and what that does to their health.

12:00  

Because I forget things, it is really difficult. For me, one week and five weeks feel the same. Five weeks can go by in my house but I do not realise that we are on week 5—I think that we are on week 1. Sometimes, because of things such as that, I am not on top of chasing anything up. If I have to chase something up, it is difficult to keep on it. Part of the problem has been that I have forgotten to phone people, but I feel that that is really not my fault.

For people who have mental health issues, it is particularly difficult to keep on top of things such as that.

There is something else that I have been quite aware of. I have similar difficulties to those of Alison Arnott when it comes to time blindness, and I had anxiety about phoning people up when I remembered to do so. It took me until March or April to do that, and then the assessment happened in April. I do not know whether that had any bearing on the date, or whether that was when the assessment was going to happen anyway, after my form went in in August last year.

There is a sort of awareness that things are measured that we are not told about as part of our assessments, such as walking to the assessment room. I might wonder whether it will go against me if I phone up. The assessors might say that I am obviously on top of everything, because I phoned to chase them up.

It is really difficult for people who are claiming in such situations. On managing budgets and so on, how could the assessments be improved? Should they be tailored to meet individuals’ needs?

The old system was not bad—although I am not talking about how it was executed. It used to be possible to request that an EMP—a doctor—should do an assessment if more evidence was needed. I had that for one of my DLA applications, when there was not so much medical evidence. I had been fairly newly diagnosed, and not a lot was documented about the difficulties that I had. That doctor—I referred to him in my submission—gave me a lot of advice and wrote down what he told me.

I obviously do not want that to happen but, in principle, if there is a case where there is not a lot of evidence and there is a bit of a grey area, having the option to build on the evidence can be helpful. However, it is a different matter to put everybody through that in cases where there is already enough evidence to make a decision. As Moira Sinclair said, someone’s skeleton is not simply going to regrow itself. If there is indisputable information, somebody else looking at it—perhaps somebody who is not so qualified—will get a different answer only by not looking at the right information.

There was a question about budgeting. The form mentions complex budget-making decisions or something like that. I was asked to take 75p away from £1, and I could not do that in my head—I still cannot do it in my head—and then to count back from 20 or something like that. How did the assessors decide that I could make complex budget-making decisions from that? That is not complex—my children can now do that better than I can. Where is the complexity? My children help me with my accounts and my bills, because I do not understand them any more, yet someone has concluded that I can make budgeting decisions myself. That seems a bit strange for that question.

That was the one that really got me. My husband was asked to work out the change from £5. As I have said, I have had to do so much. I am trying to make savings to keep the wheels on the pram.

There is no way that my husband could have managed to, for instance, transfer from one television provider to another and deal with all the associated nonsense—I ended up getting two contracts from the new provider because it made such a mess of swapping over the service. Working out how much your house is worth, along with all its contents, is difficult, but that is what has to be done when you try to reinsure. Our house insurance was withdrawn because a certain bank that was bailed out by you and me decided that it would no longer insure listed buildings. It is an offence not to have buildings insurance in a tenement, so I got right on to that. However, explaining to people that, although we live in a listed building, we do not live in a castle, and arranging the proper cover for the reinstatement value of our house so that we met our legal obligations was difficult and time consuming. That is not something that my husband could have taken on.

Many of you have had additional information from consultants and various other reports. Do you feel that the assessors did not take that into account in some cases?

The fact that the information was there was not even acknowledged.

I thank you all for the information that you have provided us with. You have raised a number of issues that we will take up with those who conduct the assessments. That is the point of listening to you: the information that you give us informs us and gives us areas to pursue, which is what we will do. You have provided invaluable information.

Again, I thank you, on the committee’s behalf, for putting yourselves into the public eye in order to help more people, because the more information we have, the more people we can help. That is what we intend to do. I assure you that we will continue to consider how the roll-out of PIP impacts on individuals and the wider population. We have to get this right but, at the moment, it does not sound as if this is the sort of experience that people want to have at a time when they most need help.

12:07 Meeting suspended.  

12:12 On resuming—  

Our second panel this morning is one individual who has come to give us information and assistance: Katie Ross, the income maximisation adviser at Orkney Citizens Advice Bureau. I invite her to make an opening statement.

Orkney Citizens Advice Bureau is located in Kirkwall, which is the largest town on the Orkney mainland. Many residents of the islands are too elderly or disabled to travel to our offices and we offer telephone appointments, home visits and an outreach service to the outlying areas and islands. Clients who use public transport might travel via bus or ferry. However, timetables are restricted and those in more rural areas might not manage to walk several miles to the nearest bus stop. Most ferry journeys are an hour to an hour and a half, although some are longer. If people have travelled to Kirkwall, they often have to stay for the day, which has time and cost implications.

Due to time and travel constraints, we often have to get clients to post us their PIP claim forms in order to allow us to carry out a telephone appointment to complete their application, and we then post it back for them to approve and sign it. The requirement to make a telephone call before being sent the PIP application impacts on our workload. We often visit clients for other reasons and identify that they may be eligible for PIP and we then have to arrange a repeat visit to complete the application. Under the DLA claim system, we were able to hold a stock of claim forms that we took on outreach and home visits. We asked whether it would be possible to hold a stock of paper claim forms for PIP as DWP visiting officers do, but our request was declined. Because we often cannot visit the client again for several weeks due to our workload and travel time, we ask the telephony advisers to add a note to the case to ensure that our client is not penalised for returning the claim form late.

12:15  

The travel time to the outer islands also affects the health care professionals who visit the clients to assess their claims, which in turn has an effect on the number of face-to-face assessments that can be undertaken in a day and increases waiting times for other claimants.

Since the introduction of PIP, we have assisted 70 clients with their claims, and at present we have 32 active cases awaiting decision notices. When the process first changed over, we found that clients were waiting much longer than the recommended timescale for their claims to be fully assessed. For example, we assisted one client with the initial telephone call on the day that the benefit was launched, which was 10 June 2013. The telephone call was time consuming; the adviser was put on hold for more than 20 minutes before they got through to an operator. After the client’s paper form was submitted, he had to contact our office a further 10 times to request assistance in following up his claim. Although the case was eventually referred to our MP, Alistair Carmichael, it still took several months for the matter to be resolved. In fact, the claim was not fully assessed and the benefit paid until 2 May 2014.

We have found that there appears to be no order to the scheduling of face-to-face assessments. For example, a client can have their meeting with a healthcare professional before another client who submitted their claim several months earlier. The longest outstanding claim that we have on file for a client is from August 2014.

We have also raised with the DWP the issue of our submitting mandatory reconsiderations on behalf of our clients and our not being copied in to the response. That causes us additional work in chasing up the client and/or the DWP to try to find out the result, and it can result in late appeals. That is particularly true for clients who have mental health issues and find it difficult to deal with forms and paperwork.

With regard to mandatory reconsiderations, the committee should also note that, per the list of PIP descriptors—which I think was sent out separately—if a client requires the use of a pill box for their medication, they should be awarded a minimum of 1 point. We have recently had to submit two mandatory reconsiderations for clients who were not awarded the point despite their stating on their claim that they use a dosette box.

Unfortunately, no tribunals have as yet been undertaken on Orkney for PIP—our first hearing is due to be held on 19 May—so we are unable to comment on its effect locally. That hearing is for a client who began the claim process in January 2014. Their appeal was submitted late due to their being admitted as an in-patient to the Royal Cornhill hospital, but it has still taken six months for the hearing to be scheduled because of the irregularity of the panel’s visits to the island. The additional time to assess the claim has not only caused extra stress and anxiety to the client, who is receiving a lot of support from social work and the community mental health team, but had financial implications because of the potential loss of income over that period.

Finally, because PIP is designed to help clients with additional costs arising from their care and mobility needs, such as increased heating bills, extra transport costs due to limited mobility, the need for help around the home and so on, many of our clients have advised us that they have got into financial difficulties while waiting for a decision on their claim. That has resulted in referrals to our money advisers for help with debts and, on occasion, our in-court advisory service for clients who might be behind with their rent and are being threatened with eviction. We also refer clients to the local food bank and have noted that clients who are in the process of claiming PIP make up the largest percentage of referrals for repeat packages.

Although we accept that claimants who are awarded benefit have their payments backdated to the date on which they originally called for their claim form, which means that they can repay any debts that have been incurred, the period of uncertainty and the increasing debt cause additional stress and anxiety for already vulnerable clients. We would also like to highlight the fact that, although claimants’ awards are backdated, other linked benefits such as concessionary travel are not. As has been mentioned, travel can be costly, with a return bus journey, for example, costing up to £10.

We also have some quotations from claimants. One client said:

“I had taken some time to gather together reports from my specialist and GP for my face to face assessment and when the HCP arrived and I tried to give her them she told me that she didn’t need to see them and didn’t even look at them as she could ‘be here all day if she did’. I was made to feel very stupid and like she wasn’t interested in me.”

Another client said:

“I was very nervous about my meeting and as I’d recently had a bi-polar episode I was feeling particularly on edge. When the HCP visited I felt they acted very cold towards me and I didn’t feel at ease at all.”

Another client said:

“I was upset and crying during my assessment. I wasn’t offered time to compose myself or to take a break. I felt like I was being rushed and words were being put in my mouth.”

I have also accompanied some clients to assessments. I have attended seven with claimants whom I have helped through the application form. Four different healthcare professionals attended those seven assessments along with me and I observed that only one read back what the client had said and offered them the opportunity to change any of the details that they had mentioned.

One healthcare professional arrived late and rushed the assessment. I had helped the client to complete the paper claim form and I felt that some of the questions were rushed and that the healthcare professional did not try to obtain examples or further information from the client. Only one healthcare professional explained how the client could give feedback on the claim process and how they could make any complaints or comments.

Thank you very much, Katie. That has given us some food for thought.

I know that citizens advice bureaux talk to one another. The committee has heard evidence about the differences between the problems that CABx in rural areas face compared with those in urban areas. They are not lesser problems, just different ones. In your discussions with your colleagues in other parts of the country, do you find that the problems that you experience are exclusive to your island communities or are they greater than the problems that others face? What is the comparison between your CAB and others?

We generally speak to our neighbours, for want of a different word—the Shetland Islands Citizens Advice Bureau and the Caithness one. On occasion, we might speak to the CABx in some of the more heavily populated places, such as Aberdeen. It is common for there to be such delays in our part of the country. The issues that we experience are also experienced in the other island communities and in Caithness and Sutherland.

How important are the face-to face assessments? Are they valuable beyond the application?

Some of the assessments that I have gone to have been important, but that is not always the case. For instance, the client whom I will be taking to a tribunal in a couple of weeks’ time has been admitted to a mental health facility several times through the Royal Cornhill hospital. She has a support network, but the tribunal papers that I have read show that there has been no additional input from her GP and no request for input from her social worker. Their input would be just as valuable as doing an assessment with her or her coming along to the tribunal.

Good afternoon, Katie. I was struck by a couple of things in your submission. In particular, you asked whether you could hold a stock of claim forms as you used to do with DLA, but that was declined. The PIP scheme is different from what has happened before. Do you think that the DWP has a strategy for island and remoter communities?

No. It certainly does not feel like that. We find, as I am sure you do in your jobs, that things are different in different parts of Scotland. However, it feels very much as if a one-size-fits-all approach has been taken.

As I said, some clients cannot cope with the initial telephone call, and if they cannot get in to see us, we have to travel out to see them. We will generally book a second appointment two or three weeks later to allow us to help them to complete the claim form. However, that impacts on our waiting list. If we could go out with the forms, especially to some of the more remote islands, it could make a big difference, and it would also streamline the process a little for people if they were struggling to cope.

There are two aspects to the system. One is the initial interview with the applicant and the other is the appeal panel, if it goes to appeal. Taking first of all the interview system on the islands, how many healthcare professionals are there on Orkney to deal with the main island and the surrounding islands?

Visiting healthcare professionals come up. They carry out all the assessments via home visits, so that will impact—

So they travel from the mainland to the islands.

Yes.

How often do they come?

They have been coming up a bit more frequently lately. The last quarter of last year was the first time that they had visited us. They generally come up for a week at a time. Our clients just get a letter to say that their assessment will be between 9 am and 11 am, for example, so they do not have a definite time for when the assessment will take place. They wait in all day and get more and more anxious about this stranger who is coming to their house and about what is going to happen.

For the most recent round of assessments, two healthcare professionals came up. I only know that because I sat in on the assessments of two clients that morning. I said to the healthcare professional at the first assessment that I would be coming to the next one with her, and she mentioned then that someone else was up as well.

You said that, for one appeal, it took six months for an appeal panel to be constituted.

Yes. To get technical, I note that the SSC1 form is the form that is submitted to the Courts and Tribunals Service to request the tribunal. That form was submitted in November last year and the hearing will not be until 19 May this year.

We heard in some earlier evidence that there might be a degree of inflexibility about the criteria and that people try to respond to the criteria as designated. You have listed three experiences that you have had with clients. In an ideal world, would you expect the form to be the basis of information for the healthcare professional and would you then expect the healthcare professional, during the interview, to flesh out what is on the form?

I did not realise this, but I was looking at an extract from the “Disability Rights Handbook” that states:

“The DWP should take into account the fact that the effort of completing an activity can adversely affect your ability to repeat it or to undertake other activities”,

which is something that we covered in earlier evidence with the first panel. However, when you are trying to complete the form, it is not very clear how you make that fact known to the HCP.

We try to flesh out the forms as much as we can and we put in examples for clients when we help them to fill in the form. As you say, they might be able to make a meal, but can they can do it safely and repeatedly? One of the ladies on the first panel this morning said that her memory is affected, and if she left a pan on the stove there could be a risk of fire. We try to get down as much information as we can when we are doing the forms, but unfortunately, with the best will in the world, we cannot help everyone to fill in the forms. Not everyone knows that they can come to us.

That means that the interview is critical. It really ought to be the clarification point for what the form means in practice for the applicant.

Yes. From sitting in on assessments, I certainly get the impression that the person who has come up has seen the form so they know who they are going out to see. I imagine that they are sent a pack with everything in it. However, rather than refer to the answers that have already been given—I have not yet heard one healthcare professional do that in the seven assessments that I have sat in on—they ask the same questions in the same order and it is as if they are asking them for the first time.

12:30  

There is a disconnect between what the applicant did with the form and what happens in the interview.

Yes. In most cases, our clients are waiting a minimum of six months, and they could have a variable condition that means that their condition on the day when they filled in the form with me might have changed come their assessment.

Thank you very much.

You said in response to my colleague’s question that the DLA claim system allowed you to have a stock of claim forms. What reason was given as to why you were not allowed to have PIP forms?

I believe that the DWP said that it is because the process is under Atos and was designed by Atos. The other reason was because the DWP is trying to streamline the payment.

But it is a form. Did you think that that was a satisfactory answer?

No. We tried to push the DWP on that, but we did not really get anywhere, unfortunately.

It would certainly help the claim system if you had those forms, as that would save time for you and for people who are claiming.

Yes.

My first question is on the issue of a point being awarded if somebody uses a pill box. It is probably one of the most simple things, but you say that, with some of the mandatory reconsiderations that you have done, a point was not awarded despite the use of a pill box being stated on the form. How can the assessor get that wrong?

I do not know. Obviously, when we are looking to reconsider a decision, that is not often the one thing that will get someone a benefit—there might be other reasons. The issue has only recently started to be flagged up. I am speculating, but it could be that people might have got a bit lax about it or have just taken it for granted.

The thing is that, if they are getting that bit wrong, which is probably one of the most simple ones to assess—it is either “Yes, folk are using a pill box,” or “No, they’re not,” because it is on the form—is it not likely that they are maybe getting some other bits skew-whiff as well?

Yes.

I want to ask about the tribunal case that you said is due to take place on 19 May. You stated that it is six months since the application first went in for the tribunal. You refer in your written evidence to

“the client’s inpatient admission to Royal Cornhill Hospital”,

which is in my patch, so I am aware of the work that Cornhill does. Is it right that somebody who has had in-patient admission to Cornhill has to face a tribunal?

No. A lot of my contact with that client is through their support network, to which they have given authority. That is because the client just cannot cope with the situation. To be honest, she just cannot cope with day-to-day issues a lot of the time, so the tribunal issue definitely causes her additional stress. I am not medically trained but, from the few times that I have had that client sitting in front of me, I know that there are difficulties there.

As I said, from looking at the papers, I know that there have been no requests at all for additional information. When that client had her assessment at the house, her community psychiatric nurse was visiting her to administer some medication. Unfortunately, the CPN could not stay but she mentioned that the client was not coping with the assessment, but the assessor still carried on with it. The client just found the whole experience to be incredibly difficult.

So the assessment itself had a huge adverse impact on somebody who obviously has severe mental health problems.

Yes.

And the tribunal situation may well lead to additional difficulties after that.

Yes.

In such scenarios, should medical advice be sought and should some common sense or logic come into play? Should folks realise that they might be doing more harm than good in dealing with folks in that manner?

I would say so, yes. The client has requested that her CPN accompany us both to the tribunal. I have concerns about the client in that she can sit for only so long before she has to leave. She does that with me when she cannot cope with what is happening around her. She will just say, “That’s enough. I have to go.” I hope that the people at the tribunal will allow the CPN to speak on her behalf, although they try to get as much information as possible from the individual before allowing anyone else to comment for them.

Fortuitously, this morning, Third Force News—which always sends us a copy of its newspaper—reported a story about the DWP being forced to disclose information about deaths. Campaigners believe that people have died during the process, for different reasons, one of which is suicide. Do you recognise that issue?

No, not in relation to any of our claimants. I would not say that any have gone ahead and taken their own lives. In the case of the client who we have just been discussing, her most recent admission to Cornhill hospital happened at about the same time as her benefit was declined. Her mental health would have been in a bad place anyway, but the process puts additional pressure on people at a time when they are already vulnerable.

Although we have not experienced this, we have raised queries about the issue that, if someone is waiting six months-plus to be awarded their benefit and is coming to the end of treatment for cancer, they might not be assessed before they have finished the treatment, which is when they need the additional money. What happens then? Are people assessed from when they first applied or from another date? We were not able to get a clear response to that from the DWP.

I want to pick up one of the points that you made about the debt that people can incur while they are waiting. You said that PIP was backdated to the date of application. Is that with interest?

No.

I presume, however, that any debt that has been incurred has interest on it for most of the clients. It is a mounting problem. If people wait up to six months, the debt could be considerable.

What other passported benefits does PIP provide, which would also not be paid during that timescale?

If an individual is not working and is claiming PIP, they will be on employment and support allowance. If they are awarded PIP and they live alone and get the daily living component, which is essentially for the care side of things, they will get an additional allowance in their employment and support allowance, because there is a recognition that, if someone is living alone, they might need to get someone to come in and help them. That will not be paid while they are waiting for a decision. It should be backdated, but that does not happen in every case. We have had to help some clients.

Some clients just think that, because they are getting six months-plus worth, which is several thousand pounds, they have everything that they are entitled to and so they will not query it further. We try to make sure that we do benefit checks for people.

PIP can also give people additional reductions to their council tax or additional housing benefit, depending on their household circumstances.

If a client is not aware that those benefits are there, they can completely miss out and will be out of pocket.

Yes.

We have been told in previous evidence that the DWP has changed its practice when it comes to terminal illness, as a result of being lobbied by organisations such as Macmillan Cancer Support. I understand that not just people with cancer but people with motor neurone disease were affected. Given what you say in your submission about delays, has the situation improved for people with terminal illness in the Orkney Islands, or are you still experiencing difficulties because of the geographical challenges that you face?

If a client has been diagnosed as having terminal cancer, which means that they are expected to have less than six months to live, when they initially call to start the PIP claim process, they are asked whether there is anything that they need to make us aware of. Quite often, their doctor will give them a DS1500 form, which confirms that they have been diagnosed as having a terminal illness. We have not come across too many clients who have been diagnosed as terminally ill, but we have had clients with a cancer diagnosis. They will be filtered in the system, in the same way that someone with mobility issues would be.

So it is not flagged up in any way.

In your submission, you mention one client who has had to contact the office

“a further 10 times to request assistance”.

What was his experience of those 10 calls?

We now try to manage people’s expectations a bit. The process was new to all of us when PIP was introduced. That client had not heard anything and had not received any letters, and he needed support in phoning to chase up his claim. That is why he contacted us. Often, he was not even able to get an appointment with us, because we needed him to be with us to make the phone call so that he could give authority for us to act on his behalf. That was a source of additional stress. The whole process was very stressful for him, and not knowing what was happening was causing him additional anxiety.

You say that you eventually referred the case to your local MP,

“yet it still took several months for this matter to be resolved.”

Did the involvement of the MP make any difference?

It can do. We try not to phone up the MP too much, as we are aware of everyone’s workload. We do that only in cases in which clients having been waiting for as long as that one had been. Getting the MP’s office on board can help, but in that client’s case, although the introduction of PIP had been anticipated, it felt as though no one in Atos or the DWP knew what was happening. It was left to us, our MP’s office and the client to try to work with the system.

Did the DWP respond to the letter from the MP?

Eventually. It was the push to have a face-to-face assessment carried out that caused the delays in that case.

Annabel Goldie has a final, short supplementary.

I do not want to discuss the specific appeal to which you refer in your submission, but if you are requested by a client to assist and the client has mental health issues that are sufficiently significant that there could be genuine doubts about their ability to have capacity to represent him or herself at the hearing, is there a case for intervention by the medical profession?

Not that we are aware of. We can make special requests to the panel. In the case in question, we have already contacted the tribunal service to explain the situation. It has asked the client to come along on the day and, if necessary, the judge can allow us to take part in the hearing.

I have had clients who have not been able to attend a hearing and I have been asked questions instead—I am talking about claims for employment and support allowance—but the worry is that, if I talk on a client’s behalf, I might not get things across as well as the client could, because only they can fully express how they feel. That is why we hope that, in the case in question, the CPN’s evidence will be taken into account on the day.

I thank Katie Ross for her evidence, which has added to our knowledge and information and has been really beneficial. If there is any other information that you think the committee could use, please let the clerks know. As things develop, it would be beneficial to us if we could be updated on your experiences, so feel free to keep in touch with us as things move forward and we will try to use that information as best we can. Thank you for coming all that way to help us out.

12:45 Meeting suspended.  

12:46 On resuming—