Welfare Reform—Your Say
Item 3 is an evidence-taking session with members of the public who contacted the committee through the web page that was set up so that we could hear the concerns of people who are affected by welfare reforms and changes to benefits. The three testimonies that we will hear in a moment give a good snapshot of some of the issues that have been raised in the many submissions that we have received through that initiative. Before we hear from our witnesses, I thank all the other people who took the time to send in their submissions—they have been very valuable. We hope that we will continue to receive submissions, because the more information we have, the better.
I propose that each of our witnesses read out their statement, after which I will bring in committee members to ask questions on the issues that we will hear about. Steve Farrell, who is one of the Parliament’s committee clerks, will read out a submission on Mr Henry Sherlock’s behalf. I formally welcome Mr Norman Gray, Mrs Janice Scott and Mr Henry Sherlock, and I thank you all for being here today.
Before we begin, Linda Fabiani has arrived as a substitute, so I must ask her to declare any interests that might be relevant to the committee’s work.
I apologise for my late arrival. My only declarable interest would be that I am a fellow of the Chartered Institute of Housing.
Thank you very much, and welcome to the committee.
We come to the evidence taking. We will take evidence from Mr Gray first, followed by Mrs Scott then Mr Sherlock, if that is agreeable to everyone.
Before I make my submission, I thank the committee for giving us the opportunity to express our fears about the change from the disability living allowance to the personal independence payment. I have spoken to my MSP, Joe FitzPatrick, and to the clerk to the committee when she visited, and both expressed the same concerns as we have, as do the other reports on the website.
Although my submission refers to my son Andrew in particular, he is not unique in the world of the autistic spectrum, and his experience reflects a situation that a large number of people will suffer to some extent in the near future. Many—or most—are unaware of the proposed changes, and they certainly cannot see the consequences, so I find this opportunity very rewarding. I wish to bring to your attention my concerns about the proposal to replace DLA with PIP, and about the criteria that are used to assess candidates and some of the effects of them.
My son Andrew is aged 32 and was diagnosed with Asperger’s syndrome only when he was aged 19, although he had been under intermittent psychiatric and psychological care since the age of three. After his diagnosis, he was assessed and granted DLA indefinitely. For him, “indefinitely” means for life. Since then, he has had the occasional reassessment. Andrew’s developmental disability stems from agenesis of the corpus callosum, which means that the left and right sides of his brain do not speak to each other as normal people’s do. That is a lifelong situation and it will never change. Andrew therefore finds it very difficult to understand why these things are happening, because he has been told that his condition is lifelong.
Research tests that were conducted by the autism research centre in Cambridge have shown that Andrew has a very high score—33 out of 50—for autistic traits; a very low score—seven out of 80—for empathising; and a low score—22 out of 160—for systemising. Although he does not give the impression of having an autistic spectrum disorder related disability, those scores indicate the true level of his disability which, with hard work by himself and us, he has been able to minimise or mask over time. However, he seems to be unable to modify some traits. The most serious of those is his poor appreciation of the concept of building time into a sequence of actions. Because of that, he finds it difficult to do things by the required time.
Andrew benefited from the modular nature of his educational courses, and was able to achieve a higher national certificate in hospitality management. He found employment at the nearby Invercarse hotel as a function waiter. When Andrew was diagnosed, the hotel was briefed by his psychologist on how to manage him, and the overall manager and a senior manager became his mentors. They have mentored him through his work there for the past 12 to 14 years.
The hotel management have co-operated well in ensuring that Andrew’s foibles are minimised and his strengths developed. Andrew can disappear—if you give him an instruction to do three things, he does the last one, forgets the other two and then disappears into his own little world somewhere for a while until he is brought back again. The hotel managers understand that, and deal with him very effectively.
He has been able to be in continuous employment with the hotel for more than 12 years, but on a part-time basis. It is through the good work of the hotel that he has managed 12 years in the one establishment. He is doing work that has a degree of routine and familiarity to it, and which he knows he is competent to do. The work is not continuous throughout the day, but involves split shifts, which allows him time to come down between shifts. He will perhaps do a set-up in the morning and then have the afternoon off, and come back at night for the service part. He gets his time on the computer so he can calm down and go back to work refreshed.
He takes on just under 20 hours a week, which qualifies him for tax credits. Both his mentors stated, when I went to speak to them about increasing his hours, that Andrew is excellent for up to five hours—he will do his work with no problem. After that, it is hit or miss—on some days he carries on, and on other days his missing time or fiddling becomes greater. They have learned how to manage him and what to do with him, and sometimes they cut short his work and send him home.
My wife and I are both approaching 70, and we felt that it was essential that Andrew have a period of independent living under our guidance. We worked with him to enable him to obtain a flat nearby. Initially, he applied for sheltered housing and council housing. For the sheltered housing, he was at the top of the disability list for six months, and for the council housing he went from 100th to 150th in a six-month period. We were able to contribute to a mortgage, and he got a flat nearby; that is his house.
He lives independently, but he needs company so he comes to us for meals and stays on. We throw him out—sometimes literally—at half past 10. It is not that he cannot live independently; it is that he needs company. There is no one at the house today, so when I go back home tonight, I will get a five hour ear-bashing while he tells me what he has done during the day, who he has served, and all the rest of it.
A determining factor for his mortgage company in securing his accommodation was his receiving DLA on an indefinite basis; the mortgage company said that because he has his DLA, he can get a mortgage, which we have underwritten. His wage and tax credits give him sufficient income to live on. His weekly income is about £250, most of which is spent on his house and his activities in the area.
He has met a girl who also has learning difficulties, but of a totally different nature from his. They got engaged over a year ago and are beginning to settle down and are looking to live together in the house. His courting took six years, so who knows how long his engagement will last?
Any significant changes to those arrangements would have a major effect on him; he would go right off and become very difficult again. I went on to the website and read the proposals and the revised criteria for the personal independence payment, and they gave me major concerns. I was quite surprised to see them there; I had not been aware of what was happening until I went on the website, as I often do, to look at things that concern Andrew.
The first of the criteria that I want to talk about—paragraph 7.4 of the criteria document—is on reliability. That does not work in Andrew’s case. Eight or nine times out of 10, he is perfectly all right and he can manage, but the 10th time? Forget it, because he will not do it. He forgets things and becomes difficult. Something triggers an overload and he cannot manage in his normal way. We cannot say that he can do something for 70 per cent of the time; he is adequate but it does not work that way with him and others like him. When he cannot manage things, it causes him additional stress and he becomes more awkward, difficult and quite fraught. We just send him off to the computer or the Wii, or we send him upstairs so that he can get peace and get ready to come down again.
Paragraph 7.5 is about safety. Andrew is quite safe when crossing roads, but again, there is no guarantee that he can do it. For example, if he is going to cross a road, he stands at the side and if he thinks it is safe enough, he will start to cross, but if something comes he will stop suddenly, go back, and then start going forward again. He cannot judge distance, time and consequences, and he cannot be definite in his actions. Any driver would have a nightmare trying to decide what to do if he saw Andrew in the middle of the road.
Another issue is support levels. Andrew does not require the kind of support that is envisaged in the form of a carer, for example. The support that he needs is mental support; he needs constant reassurance. If he asks a question of Alex Johnstone and Annabelle Ewing answers it, he would say, “Yes” and then ask Alex Johnstone the question again. He has to get the answer from the person he asks it of, as he verbalises what is happening in his own mind. He finds it difficult to make decisions independently, so if you ask him to choose between three things, he will get stuck, then say, “What do you think?” If you tell him, he will ask you about another alternative. The support that he needs is not financial or care support; it is much more about mental wellbeing.
If he went through the assessment criteria, Andrew might score three or four points, which would not give him a chance of getting a PIP. The criteria do not measure what he can do. He can cook and prepare a meal, but he chooses not to. He is fully aware of healthy eating, but his problem is with when to stop. He says, “I’ll have another one. This is my last one”, and then take two or three at once.
For activity 3, he can manage medication and is fine with the tablets that he takes. However, he has a very high pain threshold, although he cannot tolerate touch. If he is ill with, for example, an abscess, it will get inflamed and over-reactive before he will say “I’ve got this sore bit.” That kind of thing works against him. When he had his most recent abscess, he asked “Can I have a paracetamol?” We asked, “What for?” and he said, “Oh, I’ve got this bit that’s sore.” I said “But that won’t cure your sore bit.” However, paracetamol takes away the pain, and to him taking away the pain means taking away the cause and the symptoms. It would be difficult for him to manage anything on the medical side in terms of reacting to his body.
10:15
In washing, he goes over the score: he uses more than one bottle of shower gel a week, and is even worse with deodorant. He is similar to the gentleman on the television programme who deodorises himself before he goes out for his date. Andrew does the same—you can smell him downstairs when he is upstairs and getting ready to go out.
Those kinds of thing are hidden factors that come into play with his problem. In communication, he is at risk because he cannot read people. I can sit here and look at Annabelle Ewing and see her eyes and face and say to myself, “You are listening and are interested and laughing at points.” However, to him, you have got either a funny face or a neutral face, and occasionally a very sad face. He cannot read anything in-between. If you frown at him, he does not know what it means. If we are at a function and we frown at him and kick him under the table, he will say “Why are you kicking me?” He cannot read a face, so he is very vulnerable, in terms of being street-wise. When walking along in town we will sometimes say “Don’t look at these drunk people,” but he will then say “Where?” and look down directly at them. Things like that make him vulnerable.
In financial matters, he handles money quite happily; he has no problem in paying for things, getting change and checking that or in running a bank account. However, he cannot shop sensibly. If he goes into Tesco, for example, and sees a three-for-two offer, he will buy it even if he needs only one of the products and will never use the other two for a long time. However, he sees a bargain, so he is extravagant in such shopping. He cannot cope with household bills, and I get them all the time. He cannot handle them and cannot think of them or of how to manage them. I have put all his general bills on to direct debit so that he is safe in that regard and does not have to remember to pay off things.
For safety reasons, he will often take a taxi rather than walk into town, for example. His bus pass is valuable to him because he will not walk. He will not drive and refuses even to think of learning to drive, saying “I wouldn’t be safe.” He knows that he would just panic and be a danger to himself and to other road users.
The assessment also indicates that the one-to-one interview is a safeguard, but it would not work in Andrew’s case because he cannot see the whole picture. If you ask him a question, he will bore you to tears by answering one small part of the question. If you interrupt him, he comes back to where he left off, almost like a computer when a button is pressed for the next stage. He will also think “What are you wanting me to say?” So, he will try to work out what you want him to say and say it, but it will not be based on reality. To him, something is either this or that. He says what he thinks in his own mind is happening, but it can be far removed from reality. He makes up a lot of stuff just to make it sound good. If you say something, he will then think “Oh, that’s what people say,” and he will repeat it in a conversation as if it is true, but it will be far from it.
I hope that I have shown that Andrew’s true assessment needs are not being met by the PIP descriptors. His developmental need is very different from the kind of cases that are envisaged in the PIP situation. The assessment criteria give a false view of people like Andrew who have Asperger’s syndrome or other autism spectrum disorder factors.
For me, the consequences of Andrew losing his PIP are much more worrying. If he failed the assessment, he would obviously not get his DLA, which is a great passport for him to live a normal life through getting universal credit. He gets his tax credits, his council tax exemption, his bus pass and dental and medical care. That represents a big saving to him. Equally, it is a big lifeline for him.
As I stated earlier, Andrew can live on his wage and tax credit at present. However, without those, he would be faced with having to change his pattern of employment in order to become eligible for universal credit, which would mean, basically, that he would be living on benefits because he cannot work enough hours to achieve an actual living wage. That would be soul destroying for him and would make him feel like a total failure. He would have to do about 40 hours a week, but he can manage no more than 30, at a push.
The outcome might be that he would have to leave his current employment. His employers have said that they will push him up as far as they can, but certainly not anywhere near full time. Leaving the job that he loves, where everyone knows him, would be traumatic. He is on first-name terms with the provost—he goes down town and it is, “Hi, Andy”, “Hi, Chiefy” and so on. I am “Andrew’s dad”—not me. He is very well known, and he enjoys that.
He would have to leave that job, and the problem would be finding another employer who is aware of the situation, who is near enough to walk to—the hotel where he works is only a minute or two away—and who would be able to monitor him successfully and help him to deal with his problems. That would be virtually impossible. It is a big problem.
He would also have difficulty sustaining his house. If he lost his DLA, I do not know how the mortgage company would react. Would it carry on as at present or not? The worst scenario that we envisage is that, in the end, he would have to give up his house and come back to live with us. That would defeat the purpose of independent living and getting him to live a normal life. What would happen to his girlfriend and their plans for marriage? I do not know.
I am quite sure that one of the consequences is that he would need much more input from social work and from psychological and psychiatric services and, in the long run, would be a bigger expense to the state than he is at present.
Although I favour rationalising the benefits system and closing as many loopholes as possible—any thinking person would, because there is a lot of misuse of the benefits system—I think that the proposal to change DLA to PIP is too rigid. It does not take into account the needs of the individual; rather, it would have a blanket effect. The individual is much more important and the proposal certainly does not recognise the complexity of Asperger’s and other autism spectrum disorders. Each person is unique. You cannot say that everyone with Asperger’s is the same as everyone else with Asperger’s. However, the regulations and the criteria that are used do not recognise that uniqueness in their suffering and needs.
Andrew makes a strong contribution to society in several fields, to the limit of his capabilities. The proposals would make a short-term saving for a long-term additional cost.
Thank you. I invite Mrs Scott to speak—we will hear from all the witnesses before the committee members ask questions.
Some months ago, I read in the Daily Record about the cross-party working group and that it wanted to hear from individuals about the effects of the benefits cuts.
I will set out my husband’s circumstances in respect of the changes that are to be made to employment and support allowance.
My husband worked all his life, from the age of 15, in various jobs. In 2010, after having spent 25 years working for the City of Edinburgh Council, he was medically retired by the occupational health department. That was due to him having had an accident on his scooter that required an operation to fix a plate to his leg and ankle and then, just after the operation, his having a massive stroke, which left him with long-term health problems. As he is now 62, there is not much chance of his health improving; in fact, in the past year, I have seen a deterioration.
My husband applied for and received employment and support allowance—the first time in his life that he had ever had any benefits. He had a horrific medical with Atos Healthcare, which I will not go into here—it was totally inadequate and did not take into account medical information that was given by stroke consultants, doctors or the occupational health department that approved his early medical retirement—and he was placed in the “limited capacity for working” group.
His benefits continued from that time but, from April this year, the benefits of people such as my husband, who received contribution-rate employment and support allowance, came to an end after a year. My husband no longer qualifies for ESA, because his year has come to an end. The fact that I was working more than 24 hours a week completely disqualified him from ESA, because of the group that he was in. It is extremely difficult to get put into the “support” group, which is the group in which people’s benefits do not stop—you have to be within six months of death, practically, before you can get into that group.
I cannot fathom why benefits are being taken away from people who received contribution-rate ESA. That means that people such as my husband who have paid into the system for years—in my husband’s case, for more than 45 years—get benefits for only one year. For the next three years, until my husband is 65 and gets his state pension, I will have to keep him and pay his share of the household expenses. That is difficult to do on what I earn.
My husband gets DLA, which is helpful—it helps to pay for the car—but I have not touched on what will happen when DLA changes to PIP. I dread to think what will happen. Basically, DLA is all my husband gets at the moment. He no longer gets ESA, simply because he was on contribution-rate ESA, which stopped. I cannot understand why people who were on income-based rather than contribution-rate ESA are still getting it. I am not talking about people in the “support” group; I am talking about the many people who have never worked a day in their lives and have never contributed to national insurance. Many of their partners will not have contributed, either. Despite that, their income will not change. They have never paid a penny into the system—unlike my husband who has paid into it for 40-odd years—but because they are on income-based rather than contribution-rate ESA, they will continue to get it.
It is the people who have paid into the system that the changes are hurting. They might have a partner who works. I feel that the whole situation is totally unfair. Since the new law came into force, whereby there is a one-year limit on contribution-rate ESA, thousands of people have been affected—they have suffered a massive change in their circumstances. I understand that the new system may lead to people lying about their circumstances—for example, about whether they have a partner or about whether their partner works for more than 24 hours a week—just so that they can get some income. I know that that is wrong, but some people may be desperate.
On calculating our income, I found that we are £400 a month worse off since my husband’s ESA stopped. Most of the income that he gets from DLA pays for the car and gives him a little money for himself, but the fact that he can no longer contribute so much to the household expenses has affected him badly. He feels bad, because there is nothing that he can do about the situation. He cannot understand why now—near his retirement, after working all his life—when, through no fault of his own, he needs a benefit, he can no longer get it. He cannot seem to get his head around that. As someone who has contributed to the household throughout our married life, he finds it extremely hurtful that he is no longer able to do that and, instead, has to see me doing it.
I feel that many aspects of the new system have not been totally thought through, especially those which affect people who have worked for 40 or 45 years. If they get ill, they are allowed to claim benefits for only a year. There is something not right about that. Measures should have been brought in that would have allowed someone who has paid as much in contributions as my husband has to continue to get their benefits payments. I am just appalled at what has happened.
10:30
When I first sent in my submission, I was not aware of what was happening with DLA and PIP; I am now, because I have read up on that and heard more about it. I have no doubt at all that it will go exactly the same way. People like my husband will be left with next to no income and it will affect all their other entitlements, such as their blue badge. It will also affect me, through carers allowance and so on. It is frightening. If the committee can do anything to help people like me, I am sure that we would all be more than grateful. Thank you for listening to me.
Thanks very much, Mrs Scott. Steve Farrell will read Mr Sherlock’s statement for us.
Convener,
“Inclusion Scotland have provided me with details regarding the recent meeting held with Bill Scott who was giving evidence to the Welfare Reform Committee of the Scottish Parliament about how many disabled people in Scotland on different disability benefits will lose all or part of these benefits, and how many will be further affected by the housing benefit reform.
I have been asked as part of this process, to provide information regarding my own experiences of these reforms and how they have affected my life.
I am a 50 year old man who is registered blind (guide dog user), has chronic heart disease, diabetes and suffers from depression. I lost my sight at the age of 31, and as I worked for a Government Department, I was kept in employment, due to their equal opportunities policies. However, when I had my heart attack seven years ago, I was finished by the Department on Health Grounds.
I receive DLA mobility and care component and have been migrated from Incapacity Benefit to ESA (Support Group).
During my migration to ESA I was continually harassed by Atos Healthcare, JCP and DWP, all of which I complained about. The processes they used and their protocols were not followed, resulting in me feeling harassed and bullied. I did not receive the communications in my chosen format and only got them when I complained. I was forced to go to a medical centre in an area unknown to me, even though protocols stated blind and deaf/blind people have the right to undergo a medical assessment at home. Those complaints were upheld and I received an official apology. This was a traumatic time for me and it left me scared about my future. ESA is a time limited benefit, even to those of us who are put in the Support Group. In reality, this is how this benefit has been set up. The work group are limited to 12 Months on ESA and the support Group can undergo further medical assessments at any time. I was initially put in the support group for a period of approximately eight months. When I queried this, I was told, they had made a mistake and the longest anyone can be put in the support group for is three years. After this, I will undergo another reassessment. However, depending on future ESA rulings or medical examiner guidance, this could leave me being transferred to the work group sooner, resulting in ESA being removed within a 12 month period. This seems strange to me as my disability will never change, yet according to the current rules, a medical assessment can be called at any time to see whether I still am considered disabled enough to stay in the support group. As far as I am concerned this is harassment, bullying, persecution and victimisation of the most vulnerable in our society. Prior to the introduction of ESA, there were exemptions to the medical assessment process, now there are none. This means everyone has to undergo these medical assessments, even though common sense indicates no requirement. This is a waste of public spending, yet this is ignored.
It is hard enough for able bodied people to secure work during this recession, but it is so much harder for anyone with a disability. The Government appears to forget that, and as a result, many disabled people will lose their benefit and have to depend on others for their survival. I will soon be one of them.
At this time, my benefit does not cover all my costs. I have to rely on friends and family for sensory, physical and financial support. I thought I was one of the lucky ones who saved hard when I could work and bought my own home. Now I am no longer fit to work, my benefits do not meet my needs. Unlike people in social housing, I have to pay for my repairs. I have to pay for my gardening. I have to pay building insurance and a whole lot more. Is there support for people who have their own home? No. I thought the days of the blind man begging with a cup on street corners were gone. Sadly, that is not the case. I still rely on family hand outs and additional begged support in order to live.
ESA and as far as I am aware, PIP, in its introduction will never meet the true cost of disability. If disabled people were provided with the actual help they need, the true cost to the Treasury and the local authority would be so much higher than the current benefits on offer.
I fear for the introduction of the PIP, which evidently means Personal Independence Payment. However, none of the consultation papers show the application to be personal or based on independence. Once again, the questions and the weightings are all in favour of removing support rather than providing financial support. This is backed up by the fact that the main objective of this benefit is to reduce the welfare bill by at least 20%.
I fear that I will have to go through another witch hunt in order to apply for this benefit. I originally applied for DLA and due to my disability then, was awarded DLA for life. Then the wording suddenly changed on communications stating ‘indefinitely’.
Now, not only do they make the criteria harder they remove some of the ranges. The middle rate care component has been removed and now we only have high and low rate. Why? Two rates show no room for flexibility and are certainly not conducive to being personal.
I fear, without a doubt, I will only lose more income once I have to go through this undignified process once again. I am tired of fighting officials who seem to think they know more about my disabilities and needs than I do. It now makes me feel ashamed of who I am. I am being punished for being disabled and feel powerless.
Being blind is an isolating disability. If my benefits are slashed in any way, I will become even more isolated. I would not be able to afford to use my computer. This is the only true way of providing me with information and communication. I would not be able to afford the Internet, which will cut me off from family and friends. I would not be able to afford the additional high cost of assistive technology I use, which will leave me in danger. I will not be able to afford the support I need for shopping, gardening, socialising, banking, reading mail, getting places like hospital, dentist, barbers etc.
Many benefits have passported support, such as the national entitlement card, which acts as free access to buses and trains. As a blind person, I was proud of the Scottish Government for recognising the fact that blind people require a companion in order to get about and participate in society. However, if this changes with the new rulings, I could find myself without this support. Without this card, I would become bound to the area I live in, which will in turn lose my rights to a social life, family life, health, daily living activities. The entitlement card is awarded based on the benefits you receive and one of them includes DLA. Changing to PIP could have a dreadful impact on people’s mobility, jobs, involvement, health and social aspects.
I only wish the Government would look really close at people’s disabilities and see the true disabling factors. Disabled people are still fighting for equality of access to jobs, access to the built up environment, access to information, access to social lives, access to housing. The barriers are still there and with this recession, no money is being spent to remove those barriers. How are the disabled ever going to get equality?
As a blind man, my medical assessment declares I am mobile because I have a mobility aid, my guide dog. I am mobile, but not fully independently mobile. I am only mobile in areas I have knowledge of. I am only mobile if I remember my route.
I am not mobile if crossings don’t work, or during bad weather in wind and snow, or in areas I have never been to, or if my guide dog is out of commission. The questions and weightings should not be put in such a way which favours an outcome of removal of support, the questions should surely be in favour of a positive outcome for the customer/claimant. This needs to be examined under OUR human rights and the UK’s Equality Act 2010.
I am a proud man and would love to work for a living. However, the true facts are, employers do not want to employ disabled people. There are no real incentives for employers to employ disabled people. There is no strategy in place to help disabled people get jobs and retain them. Even when I was in employment with an equal opportunities employer, I did not have all my needs met. Communications were always in print format. Meetings were held and my needs ignored. Although most understood I used a screen reader which is a slower process to listen to it, as there is no facility to speed read, I was still expected to meet the same targets as someone who could see. I had to work harder and longer, just to keep myself in work and as a result I ended up with a heart attack due to the pressures. Not just doing the job, but travelling to the job, travelling within the job, coping with my disability and organising workloads. When you are the only one who is blind in the work force, you are even more isolated. There is no one who understands your needs or the support you require. I loved my job. However, I did not love the isolation, fear, bullying and hardship it brought.
It truly is a sad reflection of any Government that refuses to see the true fear it has put the most vulnerable in our society under. In my opinion, it is simple persecution. We did not choose our disabilities.
We need support to ensure that the most vulnerable in our society are not the hardest hit. Many of our disabled people are having their incomes slashed from anything between 20 to 100%.
It would be good to see the Scottish Government take positive proactive steps to help protect its people from this persecution. It would be a significant step forward to see the Scottish Government involve disabled people in any process which will affect their lives.
I hope this has given you some insight in to the fears I have for my future. This is just the tip of the iceberg and I am sure there are many stories out there from people similar or indeed worse off than myself.”
I thank all three witnesses for their contributions. I realise that opening yourselves up in such a way can be very traumatic.
Committee members will now ask questions. If you think that a question is too intrusive, personal or whatever and you feel that you do not want to answer it, please say so and we will not expect a response. Please do not feel under any pressure to give any information or say anything if you are not comfortable doing so. You are completely in charge of the answers that you give, but we will welcome any information that you can provide. Is that okay?
Yes.
Yes.
Yes.
Given that Mr Sherlock talked about feeling harassed and victimised, I will kick off with a question for him. I have been speaking to a lot of people about Atos’s approach to assessments, and some have suggested that to focus on Atos is to get away from the point—which is that the Government is behind all this and Atos is only the vehicle for doing its work. However, having heard your experience, I do not think that you can justify what Atos is doing by saying that it is only acting on the Government’s instructions. Do you share that view?
Yes. It is not just one-way traffic; Atos has been in agreement with DWP on the way forward. It has agreed the principle of the contract within DWP; although, at the end of the day, DWP is responsible for whoever it contracts out to, Atos is a private organisation and other things should be happening to ensure that it abides by the rules in the public domain. I find it very confusing that on the one side we have the DWP and on the other a private company, both of whom are blaming each other for problems. Atos seems to pass the buck to the DWP and when you approach the DWP and Jobcentre Plus staff they say, “It’s all down to Atos.” The customer is left wondering who is actually responsible and laypeople like me are even more lost because they do not know who is responsible or who to complain to. Both organisations should take the responsibility and the blame.
That is really helpful.
Obviously the three of you will have spoken to people with similar experiences. Can you give us an idea of the scale of the problem and Atos’s impact on individuals that you know?
Not many people in the autistic spectrum area have been called forward for assessment, because work in that respect is proceeding on a different basis. However, an amazing number in that community are just not aware of the consequences of and reaction to what has been happening with Atos, especially with the change from DLA to PIP. They think, “Some process is going on but I’ve got my DLA for life.” It is just bypassing them because they think that it is not relevant to them. There needs to be a growing awareness of what is happening and I think that the report in today’s Daily Record helps to raise awareness of the changing situation.
By looking at various websites and speaking to people who have been through Atos medical assessments, I have discovered just how many lies—I can honestly call them lies—go into them. I went with my husband to his; I do shorthand and took the assessment down word for word. However, what came back to us was totally different—in fact, it was practically the opposite of what my husband had said. I have heard that from many others who have gone through the assessment.
10:45
The people at Atos seem to think that if you can sit down for half an hour, you can hold a job for 35 hours a week. If you can make yourself a cup of tea, that’s you—you can make yourself a three course meal. They question you in such a way that they twist things round, so that you are practically made out to be a full, able-bodied person—you are practically an athlete by the time they are finished with you.
I do not know where that comes from—whether that is their ethos, or something that they have set up with the Department for Work and Pensions—but it certainly traumatises and upsets an awful lot of people, who feel that they have been made out to be liars. Today or yesterday, I read that someone else who they said should go out and get a job has died four or five months later, while waiting on their decision. That is not the first time that that has happened.
This is supposed to save this country money, but Atos are actually costing this country money. It does not get fined when it gets things wrong—nothing happens when it gets anything wrong. More people are going to tribunal now, over the past four years, than have done over the past 10 years. A lot of money is spent on one tribunal—there are thousands of them. There is a waiting list in the Edinburgh area. The waiting time to get to tribunal used to be about three to four months; it is now nine months to a year. The tribunal staff are on their knees, with the workload that they have. The majority of Atos assessments go to tribunal. If they are doing their job right, that should not happen.
We have heard that evidence about the number of people who are going to tribunal and winning their cases when they are heard by people independent of the assessment process. That is a major concern, which has been brought to the committee before.
If you have been working, and your company sends you to occupational health, it is totally independent of the company that you work for. Occupational health is different from your general practitioner, in that they can measure whether you are fit for work and fit for any kind of work. If you have a report that says, “No, you are not fit for work. You never will be fit for work again,” why can the people at Atos not take that on board? Why is it not good enough for them? Some of those people are not qualified in occupational health—some of them are only just nurses. Some of them know nothing about the condition that you are there for, because it is not their area. That is something else we should be looking at.
That is very important information.
I thank the three witnesses for their evidence. Although we have heard some good evidence from representative organisations, it has been very helpful to hear witnesses’ personal experience of the system.
It was interesting to hear Mrs Scott say that, in essence, lies are being told through the assessment process—that is obviously a serious charge. Does the panel get the sense that when someone goes for assessment, rather than the assessment being open, the people who undertake it have the attitude that they are there to disprove the person?
Yes. I have been for a medical assessment by Atos. To be honest, the assessment was traumatic from beginning to end. I was aware that the welfare reforms were under way, but the first communication that I received was not from the DWP, but from people at Atos. They phoned me on a Saturday at 8 pm and I thought that it was a bogus call. They said, “I just needed to phone up to see that you are Mr Henry Sherlock.” I said, “Sorry, who are you?” They said, “We are Atos Healthcare.” I said, “And? Who are you?” They said, “We are here to send you for a medical assessment.”
At first, I thought that it was someone from the Forth Valley NHS hospital and I was totally confused as to why they were phoning me on a Saturday. When I asked more questions, they could not answer them. They said, “All we need to do is confirm your national insurance number with you, so that we know that we have got the right person.” I said, “I’m sorry, but I’m not speaking to a stranger on the phone. I have heard about identity fraud and I am not giving out my national insurance number to anybody.” To which the person from Atos said, “Look, if you do not give us your national insurance number, we will stop your benefit.” That was the first contact from Atos.
That could be perceived as quite threatening. When you are there for assessment, do you get the sense that it is a genuine assessment or that it is more about proving your case? Do you get the sense that they are treating you as though you are a liar?
Absolutely. The problem is the way in which the questions are asked. I was asked whether I could pick up an empty cardboard box. In what job does someone pick up an empty cardboard box? That is not even work capability assessment. I said that physically, yes, I could pick up an empty cardboard box but that I would not know where the cardboard box was. I would have to have someone show me where the box was. Then, when I picked up the box, if I needed two hands I would become immobile—my mobility would be gone because I would not be able to use a cane or a dog to get around. I gave a full explanation of why that would be difficult, but I asked for the medical report to be sent to me and that was missing completely from the report. All that it said was that I was physically capable of lifting a cardboard box—there was nothing about my disability or anything associated with it.
It was the same with getting to the event. I was told that I managed to get to the event on time, although I should not even have been at the event—by law, under their own contract, the assessors should have come to me. Also, because I was asked to go to an area where I had never been, I took a companion with me, but that was never mentioned in the report. All that was mentioned was that I was smartly dressed with no food stains on my clothing, that I was very polite and that mobility-wise I could walk. I could not find my way around the building without that additional sighted support, but that was never mentioned.
I would not say that the assessors were intentionally lying, but they were intentionally missing things out that would have resulted in a positive outcome for me.
Are you saying that the final report did not mention that you were blind?
No, it mentioned that I was blind but it did not mention that I needed support to get to the event and even to find the chair in the room. Everything that was put in the report was basically geared towards removing the benefit. There was nothing about what support I required to get to the event; it just said that I arrived there on time, was smartly dressed and spoke well.
Would it have been better if you had turned up late and not been smartly dressed?
Absolutely.
All the reports seem to say that. One of the first things that they say is that the person was smartly dressed with no stains or anything and that they were polite and well spoken. That seems to be a standard line.
It is a tick box.
Yes, most of them are tick boxes.
It seems bizarre. What relevance might that have?
The individuality of someone’s condition is not taken into account, it is just tick boxes. I was there with my husband when they were doing his assessment. Atos has the package on its computer, and while the doctor, nurse or whoever was doing the examination they were, at the same time, typing something into the computer. They were also asking questions and my husband was answering. I was taking down what he was saying word for word because I knew that I could get a copy of the report later to compare it. They were not putting down anything that he was saying—it was just a matter of ticking boxes. Could he do something? Yes. There was nothing about the problems that he might have in doing it. Lots of disabled people can do lots of things, but they cannot do them consistently. They did not ask about anything like that at all.
I have a couple of questions for Mr Gray. It was interesting, although depressing, to hear about the impact that the changes might have on Andrew’s mortgage. You also said that you have set up direct debits to pay all Andrew’s bills. I presume that they could be impacted on by any change in his financial circumstances. It seems ironic that some of the changes to the benefits system that we are told are intended to encourage financial independence are potentially doing exactly the opposite in Andrew’s case. Is that a fair reflection?
Yes, it would remove all the independence. At the moment, his money is well managed, but if the changes came in he would start mismanaging his money, which would cause more problems. Some of the things he does would have to go. For example, he does a lot of swim training, but he would have to give that up if he lost his benefit. We hear that people should be more sporty, but he would have to give up sport and stop the concession swimming that he gets. As I said, if his entitlement to a bus pass went, he would be stuck and he would be able to do only half of what he does now.
It would definitely have an impact on his financial management, which seems contrary to what we are told is important.
It would definitely have an impact. He would have to think about what he could do and where he could go. For example, at present, he contributes to his personal pension, looking forward to when he retires. He puts some of his weekly salary into the pension. That would definitely go early on, because he could not afford it. He is thinking about making sure that he can live, rather than making sure of his future. However, his future would come into play, and the state would have to pay him more in the end when he is older, at whatever date it decided to pay him.
I have one further question, which I hope is not one of the intrusive questions to which the convener referred. If it is, please feel free not to answer. You spoke of your son’s difficulties with understanding that the system is changing. He was told that he would get the benefit for life, but that has now changed. Will you tell us a bit more about how that has impacted on him and your family?
Initially, it did not impact much on him but, when I started getting involved, he realised that it was serious. As far as he is concerned, he might lose his DLA and he is going to lose money, and that is a big concern to him. One factor that he had not thought about until I mentioned it was about what will happen to his bus pass and other things such as tax credits. When I told him what is going to happen to his tax credits, he looked shocked. His DLA means that he also gets tax credits, as he is working part time and cannot work full time.
So the situation has obviously had a negative impact on his mental wellbeing.
Yes. Certainly for a week, he was really difficult. He was invading space and being a nuisance and just fidgeting around—he was not himself. He knows that he might lose benefit, but he cannot associate that in his mind with what follows on from it. He sees the issue too much in black and white and he does not extrapolate the other factors.
I thank the witnesses for giving evidence to the committee—it is very brave of you to do so. Although the committee has talked to many people about the issue, it is good that you can give your message to a lot more folk out there. Many folk think that the changes are having a major effect on them but not necessarily on everyone else.
I will concentrate on the issues that you all raised about losing independence and feeling isolated. Mr Gray, you stated that if Andrew’s job were to go he would lose his independence, which I am sure would create even greater isolation for him. What would that mean if it happened?
I am not sure—I really do not know what he would do. Normally, on a Sunday, he is told what hours he will work during the week. If he gets only two or three shifts, he is not happy and he takes it out on us at home. So it does not bear thinking about what would happen if he was told that he did not have a job. We cannot really read his mind and find out what he is thinking inside, but we know that when things go wrong and he cannot work out his own solution, he gets up to things that we call Andrew-isms—he hides things and breaks things and he does things without seeing the consequences. That has got him into trouble with the justice system, because of that factor of not knowing what he is doing and not being aware of it. That is a way of getting revenge.
He would think that he had been damaged and got at by the state, so he would look for some way of getting revenge on external agencies. The situation is very complex and we cannot say how he would react, but he certainly would react, and it might have bad consequences.
It is somewhat ironic that the changes might stop folk working who are currently working. In those circumstances, should the individual case be looked at? Should the benefit be tailored to the individual? As you are right to say in your submission, your son contributes to society.
11:00
What I said about Andrew working for five hours did not come from me. When I talked to the hotel about the possibility of increasing his hours and going full time, the manager and my son’s mentor said, “No—Andy would not cope.” Independently, they both said that five hours were his limit. If the benefit is taken away, he will be put under tremendous stress at work.
I will ask Mrs Scott about independence and isolation. Having worked for as long as he did, your husband probably finds it extremely difficult not to work and not to be able to contribute. You say in your submission that he will in that regard lose his independence and feel more isolated. What is that doing to his mental health? If that question is too intrusive, you need not answer.
Being unable to contribute has made my husband quite depressed and has made him feel less of a man. What has made that worse is the fact that he is helpless, because he can do nothing about the situation. He cannot go out and get a job, because he is unable to work. He knows that, his consultant knows that and occupational health services know that.
My husband would love to go back to doing what he did before or to get some kind of job, but he is not fit. Apart from the disabilities in his walking and so on that the stroke caused, it also left him with slight brain damage. He is not as quick as he was and his memory is not great. He feels less of a man and, because he can do nothing about the situation, he feels pretty helpless. He also feels victimised because, although he worked and contributed for all those years, now that he needs help, he is not getting it.
Your husband believed that paying into the system ensures that the state looks after people if anything happens.
Yes—the idea of paying into the system in case anything goes wrong.
We never envisaged what happened. We expected that my husband would retire at 65 and I would retire at 60; we did not think about anything like this happening. What has happened is difficult for him to take. As I said, when somebody who has worked and contributed all their days can no longer do that, they feel helpless, which can make them feel pretty low.
I now have questions for Mr Sherlock. We have the great privilege of working with our colleague Dennis Robertson, who is blind. That gives us a little—but it is probably a very little—insight into what you face.
You talked about losing independence and about isolation at work previously. If a major change happened to your benefits, how would that affect you?
That would affect me in many different ways. People who are blind feel isolated, because a lot of the world is visual. Everything is visual now—everything involves a touch screen. Unfortunately, progress has left us behind. There are talking newspapers, but people do not realise that they give only a little bit of the news—only snapshots—and not the full paper.
I use my computer to go on websites and listen to what is going on in the community. I contact family members through services such as Skype, because that does not cost me a phone call. I make savings in that way.
Using specialist equipment is the only way that I can communicate with family, friends and others by e-mail. I have the free independence to do that because I have a talking computer. If the benefits were removed, I could not afford to continue with that because the computer needs to be upgraded every so often, which has a cost. Computers do not last for ever. They get left behind within 12 months, so I am always upgrading. Without my personal computer at home, I would be cut off from the whole world.
My current DLA payments do not take into consideration the fact that I live in a rural area and that it is more expensive for me to get a taxi from there to town. It costs £15 to get into town from my home. The benefit that I currently get pays for one night out a month. That is my social life. If the benefit is reduced, my social life will go completely.
At the moment, I rely on family and friends to support me. My brother pays for my phone bill because I cannot afford it. Without my phone, I would be isolated. I cannot rely on family and friends to do that for the rest of my life and, if the benefits are reduced even more, I dread to think how isolated I will become.
So, without your PC and your telephone—which somebody else pays for at the moment—you would be completely and utterly isolated in a rural setting, where you would not even be able to go out for one night a month.
Absolutely, yes.
Thank you very much for that evidence.
That would have an impact on my mental health, which would then have an impact on the national health service. There is a danger that, instead of being more cost effective, cutting my benefits would be more costly.
Absolutely. Thank you.
I will start with a question to Mr Gray. Because it struck a chord with what I have heard from people in my constituency, I was interested to hear that when Andrew is asked questions—whether it be by Atos, social workers or others—he often gives the answer that he thinks the person wants to hear. Indeed, I have heard it said before that someone in his position may well give the opinion that he last heard.
That is right.
First, I have a technical question. If someone like Andrew goes along for an assessment, is it possible for them to have someone with them who can contradict what they say? If so, would that be taken seriously or does it come down to the idea that we want to hear the person’s own views and the pretence that that can be done in a quick interview, ignoring those who know the person really well?
My understanding is that somebody can go with them to advocate for them. However, the problem is that Andrew would not keep his mouth shut; he has to put his bit in.
When we spoke to the papers yesterday, I warned him, “Keep your mouth shut and watch—please don’t speak” but even then he still could not keep his mouth shut. He would intervene and break up what I was saying.
The people who conduct the interview would be faced with the dilemma of whom to believe: his advocate—who would be me—who might have their own agenda to speak to, or Andrew, who is the person with whom they are really concerned. I am sure that they would turn to his views rather than mine.
That leads me on to the concern about what would happen to someone like Andrew—perhaps someone at a different level on the autistic spectrum—if they did not have someone who cared to advocate on their behalf. They might leave an assessment having given all the supposedly right answers, because that was what was expected, and have no one at home to help to put it right. That seems to me to be a terrible, terrible thing to do to people.
Yes, that sounds about right.
I suppose that it is similar for you, Mrs Scott, sitting listening to your husband, who suffers all the frustrations and the lack of self-esteem that you mentioned. I suppose that he may not always be absolutely truthful—if I can use that word—because there is a level of despair about the truth. It must be frustrating for you to listen to that, knowing that the case is not as straightforward as the one that he is putting over.
I went with him to his medical and he was very truthful. However, quite a few times, I had to jump in and say, “No, that’s what you used to do but you don’t do that now. You’re not capable.” The interview was about six months after the stroke and he wanted to think that he was just like he was before. He was not—there was medical evidence to prove that. Quite a few times I had to say something, but nothing I said was registered.
We heard from other people who realised after being assessed that they had tried to perform at their best, even though that may have been the best that they could do that day—they were unable to do the same thing again for a month or two because they had overstretched themselves. Is that the kind of thing that your husband did when he was assessed?
Yes, I think so. He made sure that he had clean clothes, had shaved and so on. I had to help him to have a shower and get shaved before he went.
People are proud. They do not want to sit in front of a stranger and tell them that they cannot do things that they were perfectly capable of doing before, even though it is the truth. Sometimes you need someone there to say, “I’m sorry, but this isn’t the way it is any longer.”
For a while, my husband did not want to admit that he was unable to do stuff. Many people who have the Atos interviews will be like that. That is especially the case for elderly people, who are very proud and do not want to let on that there is anything much wrong with them.
Mr Sherlock, I guess that links to what you were saying—that there is no individuality in the interview and that it is a tick-box system. It seems as if there is a massive machine in Atos and DWP and no one can break out of it. Is the level of uniformity such that many people are getting left behind and are not getting a fair shout when they turn up at these interviews?
Absolutely. There is a spectrum of visual impairments, and not everybody will fit into one box in that regard. As for me, when someone asks, “Can you do this?”, of course I will say, “Yes, of course I can do it” because, again, I am too proud to say, “I’m a bit of a failure really.” When somebody asks, “Can you cook a meal for yourself?”, I will say yes, but I will not admit that several times I have stabbed myself, cut myself or set fire to the kitchen because I did not realise that the cooker was on. I am just going to say, “Of course I can.”
These things are missed all the time because people do not want to admit that they are a failure. They already have a stigma. We are being painted with a stigma now. We are being classed as scroungers and as workshy, which none of us is. It is not that we are disabled but that the environment is disabling. That needs to be addressed.
Please correct me if I am wrong, Mr Sherlock, but I suppose that blindness is an example that we could use of a spectrum—it has so many different levels and grades. Someone who has been blind from birth may have learned an awful lot of things, whereas I think that you were 31 when you became blind.
Yes, I was 31.
It is a very different thing if it happens to you in adulthood. Even those variations and grades are not recognised.
No, not at all. When I lost my sight, I was too proud. I wanted to get back to work so I went back after six months of rehabilitation. I had had fantastic rehabilitation from Guide Dogs Scotland, the social worker and so on but, when I got back into the workplace, there was no rehabilitation there. I was left with nothing really, until I said, “How am I going to do my job?”
Twelve months down the line, I was provided with a talking computer. I had been unable to manage workloads. How do I organise something that is handwritten? On top of the struggle of learning the activities of daily life, such as how to travel, I had to learn how to manage workloads. It is still the case in that arena that nobody teaches you.
Are there any questions on the assessment about how you would cope in the workplace?
None whatsoever.
11:15
From what I have heard, I get the impression that the assessment deliberately uses social norms against people.
Yes.
It seems that someone getting up and dressing well to present themselves well is used against them rather than being seen as a good thing, particularly if it is the only time in the week when they can get out of bed. Anyone going to an interview would want to present themselves as best they can, but that can be turned against the person who is trying to present themselves in the best possible light.
I absolutely agree with that comment, which sums up what we have heard this morning and what we have been hearing for some time. I echo my colleague Kevin Stewart’s opening remark to the witnesses in saying how brave you all are to have come along this morning to share your experiences. I thank you for doing that.
In a previous life I was an MP at Westminster, dealing with the kind of issues that we are discussing. I remember the disquiet over DLA and, indeed, the number of appeals that were made. A disproportionate number of initial negative decisions were successfully appealed against. Sadly, what we are seeing is not a new problem but a significant escalation of the existing problem.
I find it disgusting that there is no discretionary element in the benefit system. I believe that it was removed under Thatcher and was not restored during the Blair years. It has still not been restored and I suspect, although my colleague Alex Johnstone might know better, that it will not be restored under the present Government either. I do not understand how such a system can be operated without discretion, and I do not see how it is possible to get any sort of justice in that case.
I will ask a specific question in a moment, but I think that this morning’s discussion raises serious questions about the role of the medical profession and its ethics and orthodoxies. For example, in the case of Mr Gray’s son Andrew, the state is allowing those people to say—because the DWP has contracted with the company concerned and has set the parameters or agreed to them—that Andrew is as able-bodied as the next person who does not suffer from any spectrum condition. To take Mrs Scott’s important statement, lots of disabled people do lots of things but not on a consistent basis—that is the crux of the matter.
I think that we are looking at a sort of Kafkaesque approach to the issue, which is very dangerous for society indeed. We have to look at the British Medical Association and the royal colleges and ask how they are defending the integrity of the medical profession.
I wonder whether the witnesses, if they feel inclined, can share with the committee how each of them currently stands in the process: whether they have appealed or are awaiting a first decision, for example. In addition, if you have gone through the Atos interview, can you state who conducted it? Was it a doctor, or was it a nurse? If it was a doctor, was it one who worked in a neighbouring NHS trust? If not, who conducts the interviews?
It is quite simple. We have had no contact at all as yet. We expect that Atos will probably contact us next spring to call Andrew in. I think that the delay is because it is not a physical disability with Andrew but much more of a mental factor. Therefore, we have had no contact whatsoever—we have simply maintained our awareness by persevering in looking at websites to find out what is happening.
The only contact that I have with Atos is that my daughter is a physiotherapist and she has been doing blue badge assessments. She certainly reflects some of the ridiculous things that have happened in her experience of people sent to her for assessment. Some people have said that they can walk because they are too proud to say that they cannot walk, so that is what is put down on the form even though they cannot walk across the room. Others come in without their stick because they want to show that they can walk. That is my only knowledge of, or contact with, Atos.
The contact that I have had is the initial form and stuff to fill in. I then went with my husband to his medical. We got a copy of the report, for which I had to phone Jobcentre Plus three times. The only other contact I had was the letter saying that his benefit was stopping because he was under the contributions rate. Basically, that is it—we have not had anything about DLA but no doubt that will come at some point next year.
If I remember rightly, we saw a doctor at the medical. I am not aware of any specific qualifications that he had, apart from the usual GP ones. Nurses were also doing interviews that day. Those who do the assessment are not interested in getting or seeing medical evidence from your own GP, specialist or anyone else.
Unfortunately, I have been through the full assessment. Atos had actually put me forward for a medical assessment before my ES50 form or whatever it is called was completed. I do not know how it happened but I had to complain about it.
As it turned out, a nurse carried out my medical assessment. I do not know what standard of nurse she was, but I believe that she was from the midwifery college. Initially, her assessment was that I should be in the support group for eight months. When I complained about it to DWP and the DWP minister and asked, “Can you please explain why I have been put in the support group for only eight months when my disability is for ever?”, they said that they had made a terrible mistake and that I would be put in the support group on the understanding that I could be called in at any time for further medical assessments, depending on the rulings.
I do not know where I am now. I have been put in the support group, which means that I do not have to look for work; I am quite happy to look for work but at the moment I really do not know what to do. I am just waiting—it is like a time bomb—and I am sure that when my DLA is reassessed next year the process will just be the same as the one that I have gone through.
To be honest, I have got to the stage of thinking, “I really don’t want to apply”. I do not apply for any other support and really do not want to go through the process again. It is such an infringement on my personal life and who I am as a disabled person. I certainly could not face an appeal. It is like I have committed a crime and am being judged. I am not a criminal; I am a human being who needs additional support but here I am, facing a criminal panel that will make a decision on my life and future. I am not sure whether I will appeal against any decision.
I understand why you feel that, Mr Sherlock. I find the whole thing absolutely disgusting. However, my advice to you is, “Always appeal”. You are entitled to benefits and must pursue your rights and entitlement.
I know, but it is just the process that you have to go through. They do not even provide communication in the right format.
It all sounds absolutely dreadful.
They know that you are registered blind and then give you a timescale that you cannot meet. As a result, they say, “Your benefit’s going to be sanctioned”—which is where the bullying comes in. If you do not do what you are told, your benefit is dropped or sanctioned. What happens to my life then? It does not simply go on hold; I still have to live. That is the sad thing.
Going back to Annabelle Ewing’s earlier question, I have a fear that when the assessment comes up we will not be able to prove Andrew’s situation. It has taken a long time for us to find out what it is; eventually, he was tested with an MRI machine in Cambridge, which proved that he had agenesis of the corpus callosum. How can we prove in an interview that that fact has not changed? We have medical evidence saying, “This is it—that situation won’t change”, so why, as we have asked before, will that not be accepted? It will be impossible for us to go through a process of trying to prove things.
You are absolutely right. As one of the submissions suggests, if the UK Government is taking a penny-pinching, cost-cutting approach, there must come a point at which some of the re-examinations or reassessments are not cost saving but cost inducing. As you clearly say, Andrew has a particular condition that is proven by medical evidence of the highest grade and, sadly, absolutely nothing will change about that. All that will be achieved by the assessments and perhaps reassessments in years to come is to cause the state further expense.
We have had evidence previously about the impact of Atos having to go through so many appeals and tribunals. There is also evidence that GPs are spending so much time drawing up reports for appeals and assessments that a burden, which was not envisaged, is falling on our health service.
Other members want to come back in, but Alex Johnstone has not had a chance to ask any questions, so I will come to him before we go back to other members.
I will take up one broad point and a specific one that relates to the evidence that we have heard.
During the opening presentations, we heard about Mr Sherlock’s housing arrangements and those of Mr Gray’s son. I think that they both have mortgages to pay. Mrs Scott did not touch on that. Are you a home owner or a tenant?
My husband was a residential caretaker for the council for 25 years, so the house went with the job. However, the year before he had his stroke the council changed residential caretakers’ status by putting them on shift work and it rehoused us elsewhere in the city. In the circumstances, it is just as well that we decided at that point not to go ahead and buy our house. We thought that, given our ages and so on, it was not worth while, because John was coming up to 60 and I was in my late 50s.
We are therefore in council housing but, although I must admit that I get repairs done when I need them, I still pay full rent and council tax. I do not as yet pay reduced rent and council tax, because I am still earning a bit. If that should change, I could probably apply for reduced rent and council tax.
We have touched on the Atos hearings, interviews and so on. The process has already changed and more change is coming next year. To what extent do you feel that you have been given support and independent advice? Where have you managed to find support and independent advice? If you have not managed to find it, do you think that you should be able to?
That is quite a difficult question, because a lot of the places that you can get advice from are being cut back, so it is very difficult to get independent advice. I am very fortunate, because I get support from Inclusion Scotland, independent living in Scotland and other organisations that I have networked through. I can get advice from those organisations and even from the volunteer service in the Falkirk area.
To be honest, there is a limit to the advice and support that such organisations can give, because so many people are going through the process. You might be guaranteed half an hour’s advice when it would take weeks to go through everything that you have to face. Not only that, but you also need support to fill in the forms to apply for the benefits, because they are not automatic. You have to apply and it seems that you must get the wording right to meet the indicators. A lot of the benefits advisers know about that but we as individuals do not. I know about it, because I participated in the consultation paper for the PIP. I therefore understand more about the proposals, so I have fears about what will happen in the future.
I know for a fact that if the proposals in the consultation paper go through, I will lose a hell of a lot of money. I do not know where to get advice from about that, because the proposals will become law and that will be it—end of story—no matter what advice I get. It therefore all just seems hopeless at the moment.
I used the council’s advice centre on South Bridge. Although you sometimes have a wee bit of a wait to see someone, they are very helpful. They help by going through the forms and so on with you. I phoned Chest, Heart and Stroke Scotland, which was also helpful. I cannot remember their names offhand, but a couple of really good websites were very helpful. They do not cost anything and the information is pretty accurate.
In my case, I got information purely from the internet—from working through the DWP and Scottish Parliament websites. That is how I became aware of what was happening and familiar with the problems. It was more by chance than design that I found out about that. I am an ambassador for the National Autistic Society, and I will go and tell it that it is essential that it sets up support. It is important that somebody takes this on and helps the rest of the people on the spectrum, because so many people have no idea what is happening and they might not find out until they cannot cope. That is not how things should be done.
11:30
It sounds as if you have not had enough contact to answer this question, but I will ask it anyway. Do you find that support, where it is available, is disjointed and specialist? For example, if you have a housing problem, you might go to your landlord, but if you are an owner-occupier with a mortgage, you will have no landlord to give you advice. Is there fragmentation across the sector when it comes to the need for advice?
I think that there is. I forgot to mention that the Royal National Institute of Blind People does a brilliant job on the appeals process, as does Citizens Advice Scotland. They are very supportive. Again, however, support is fragmented. The RNIB will deal with specifics such as the appeals process and filling in application forms, but people have to find another avenue if they need additional support. There is no one-stop shop. It is pot luck whether someone finds something that sends them in a direction that provides them with additional support.
I needed some repairs doing to the house, but there was nobody out there who could provide them. Some charities provide repairs of up to, maybe, £100, but if the cost goes beyond that, there is no support. I just did not know where to go.
A few minutes ago, you talked about the process of going through an appeal and you said that you felt like a criminal in court. The thought that occurred to me was that, if you were a criminal in court, you would be offered a solicitor to represent your interests. In this case, you are on your own.
Absolutely.
From what I have heard today, you are well capable of standing up for yourself, but that is not the case in every circumstance.
The situation that we find ourselves in—I will not be rising to Annabelle Ewing’s bait, by the way—is that change is happening, more change is coming, and people such as me will, in debates in Parliament, justify large parts of that change as being necessary, but we appear to be in a confused position just now. Individuals who need to find a way through the change simply have no one whom they can rely on to provide support.
Yes.
Yes.
We are not against change—not at all. We see the need for change, as I said earlier. What we are against is the unfairness of the way in which the change is being made and the fact that, instead of focusing on individuals, it is lumping people together. People’s individual needs are different, so the assessments should be different—they should be geared to the person. It is not change that we are opposed to, but how it is happening.
Several colleagues want to come back in with questions. I will allow short questions from Linda Fabiani, Kevin Stewart and Jamie Hepburn, and we will see where that takes us.
I pick up on Annabelle Ewing’s point that, by the time people go through appeals and so on, the reforms could cost more. I cannot remember who else commented on that, but it is clear that the global cost is ridiculous if people get turned down. Mr Gray talked about the social services that would have to kick in should his son Andrew’s entire life change as a result of this. What about those who do not have support from family or friends? The overall cost of the reforms could end up being a lot higher.
As I said, I am a carer for my husband. If my carers allowance stops because he loses his DLA, I will still be expected to look after him—for nothing. However, if I refuse to do that—which I can do—or if, by chance, I cannot do that, a good part of his care will have to be provided by the local authority at a cost of about £14 an hour. He will certainly not get the 40 or 50 hours of care a week for £58 a week that he gets from me. However, even if he just gets a couple of hours of care a day, that is a big cost to the local authority that does not happen at the moment. It will cost the authority more to do that than if my husband continues with his DLA and I continue to receive my carers allowance. It is mad.
It is not just the physical support; it is the procedural support on top of that—the clerical support, the changes to forms and leaflets, the advertisements and whatever else. All those costs accumulate so the procedures within the local authority are going to have to change. Funding for all of that needs to be found before the care is even looked at. There is a huge impact there that has been brushed under the carpet and it needs to be explored as well. It is sending us backwards rather than forwards.
Convener, I want to come back to a point that you made about GPs. I met someone last week from an organisation that I will not name because I do not have the person’s permission. They said that a number of GPs are now refusing to write directly to Atos. Have any of the witnesses had that experience with their GP?
No, to be honest, I had the opposite experience. I went to my GP because I suffer from depression—it was brought on initially because of my sight loss. I have been suffering with it and hiding it for years. The Atos assessment just brought it all back—how horrible my life really was. I went to my GP about it and he said, “Look, don’t let it bring you down, I’m on your side. If you need any reports, anything at all, I will be fully supportive so you are not on your own.” My GP is very supportive and helpful and he makes sure that he sees me at least once a month because of the depression and because of what is happening at the moment, as I must admit I struggle.
We may need to probe further what was said to me last week about GPs refusing to write to Atos, because that is another support link that may be going in certain places around the country.
We need to look at that.
Do GPs get paid for that service, or do they provide it for free? We got a report to take to Atos—not that Atos used it, right enough, but our GP gave us one; there was no problem about that. Do GPs get a payment from Atos for those reports?
I do not imagine that they would, but I do not know.
I could be wrong but, from memory, I think that if an individual consults a solicitor through the legal advice and assistance scheme—although the solicitor is not funded to appear, because legally it does not cover that—and the solicitor has a mandate from the client to seek a medical report from the GP, the cost of that report, or at least a reasonable element of the cost, would be funded at the moment. That would need to be checked—perhaps it is an important issue to check.
I do not think that any report would be funded by Atos—indeed, it could be argued that there would be a potential conflict of interest. I very much doubt that Atos funds anything beyond furthering its very expensive contract with the state.
If GPs are spending more time doing reports, whether or not they are being paid for them, they are spending less time looking after patients.
That is true.
That is a cost to the NHS regardless of whether any direct financial payments are changing hands, but we need to look into that issue—the points are well made.
The committee has decided to write to Iain Duncan Smith, the Secretary of State for Work and Pensions.
Give him my regards, will you? [Laughter.]
I do not know whether we have sent the letter yet—perhaps we could work that in.
We hope to have the secretary of state here to give evidence—if not him, a minister in the Department for Work and Pensions. My question to each of the witnesses is this: what one top question should the committee ask him or one of his ministers? This could be interesting. Keep it clean.
I want to know why they think that withdrawing benefits is going to encourage disabled people to get back to work when there is no strategy and no support in place to offer help for disabled people to get back to work. The access to work department has reduced its funding not increased it. The items that can be bought through access to work funding have been reduced as well. We can no longer get voice-activated computers through access to work. Where are those strategies? Where has the training gone that enables jobcentre staff to give disabled people the power to get back to work? That is sadly missing. Even now, jobcentre staff cannot get people back to work because there are no jobs.
Mrs Scott, aside from giving Iain Duncan Smith your best regards, what would you like us to ask?
How can we expect people to come off disability living allowance and get a job when occupational health specialists have said that they are just not able to work? For someone who is 62, with retirement looming at 65, there is not much chance of that happening in the next two or three years. What are those people meant to do? What are they meant to live on when they have contributed all their lives?
My question is this: how are you going to build in flexibility to accommodate those who have a non-physical disability, recognising the fact that they are in a totally different situation?
Good questions.
Let us know when Iain Duncan Smith is coming.
You can be in the gallery.
I have got my dog trained.
I think that the chances of him coming to the committee are diminishing by the second, so we better draw this session to a close.
I thank our three witnesses—Mr Gray, Mrs Scott and Mr Sherlock—for opening themselves up to us this morning and helping the committee to come to a greater understanding of exactly what is happening. I am particularly concerned about the way in which the DWP and Atos, on its behalf, are pursuing the whole strategy. It shows an indifference at best and a cruel disregard at worst to the impact that it is having on individuals. I do not know which one of those is the most difficult to accept—the indifference or the deliberate pursuit of such an agenda.
The Welfare Reform Committee has a lot of work to do. We made it clear at the outset that, for us to do our job as effectively as we would like, we have to give members of the public such as you the opportunity to inform us about the new system’s impact on them. Mrs Scott, Mr Gray and Mr Sherlock have taken advantage of the your say initiative that we instigated for that purpose, and I thank them for their contributions and for having the courage to come before us this morning and provide us with their personal experiences of the welfare system.
I thank you for you letting us have our say; that means a lot to me.
Your evidence makes it quite clear that the welfare system in Britain must be designed to support people when they need it, and that when people are at their most vulnerable, the state should be there to support them in their need rather than turning its back on them to pursue an agenda, whether it be ideological or cuts driven. That is not acceptable.
We have to use the information that you and others have given us on the website to inform the Scottish Government and the Scottish Parliament of the impact of welfare reform, and to ensure that all levels of government in Scotland appreciate what has to be done to mitigate the detrimental impact that is enveloping people such as you in Scotland. Nothing less will do. That is the challenge that faces the committee and the Parliament. You have made a huge contribution to that this morning and I thank you very much for it.
I understand that your work is not finished, and our media team wants to take you through to an anteroom to follow up some of the things that you have said this morning. Your contribution this morning has been invaluable for our work and I appreciate the time that you have taken to come to the committee and be so open and frank with us. That will help the committee and stand us in good stead for the future. I will suspend the committee for five minutes to allow us to get organised for our private session.
I thank you and the committee for your sympathetic approach to us. It has been very encouraging. We started off by saying that it might be quite intimidating, but it has been far from that. I have certainly enjoyed being part of your deliberations and I have felt your warmth towards us as witnesses. I thank you for that; we have been very much at ease.
Thank you.
11:45
Meeting suspended.
11:53
On resuming—
The purpose of item 4 is to consider the paper that has been provided by the clerk and decide how we approach each of the items listed. As you will see, we are invited to agree to undertake external visits to other your say respondents. We heard from some of them this morning, but we could go out and meet others in their localities.
We are also asked to agree to hold a committee meeting at an external venue; to ask the clerks to draft a programme of further evidence-taking sessions with other your say respondents; and to delegate responsibility for witness expenses to me.
I agree with the suggestions. Like others, I have met a number of groups. Outside the committee, convener, I told you about my meeting the other week with people from the learning disability group in Aberdeen and their advocates. Today’s formal session has been useful, and I think that the folk were extremely brave to participate. However, perhaps we could hold an informal session, so that folk would be able to talk freely without going on the record.
Do you mean that we could have a sort of informal round-table event?
Yes, I think that that would be extremely useful. The formal arrangement is good for some folk, but it will probably not work for everyone. As I said to you, convener, I heard more common sense at the meeting that I had with people from the learning disability group than I have heard from some of the politicians who are formulating the agenda. It would be useful to hear from them and their advocates. They are going to make a submission to the committee—they came to me with written work. However, that group, and others like it, would benefit from an informal session rather than something formal.
That is a good idea.
Taking a slightly different view from the one that has just been expressed, I am keen to ensure that we hear from individuals about their experience rather than from groups that have formulated a position on the experiences of their members. We have done that before, and I found what we got today to be much more valuable.
Although I was speaking about the meeting that I had with the group, I would be more than happy if we spoke only to an individual from the group—along with their advocate, because that would be necessary—in an informal setting. I am not necessarily talking about hearing from groups; rather, we could hear from individuals from those groups.
We could get a combination of the two. There is no reason why we could not go to a venue and have a session like the one that we had this morning and follow it up with a discussion with groups that could speak about issues more generally.
On the subject of going out of the Parliament, we heard today about the difficulties that some individuals have in attending interviews and meetings such as this one. We might want to think about people who find it difficult to come here, and take the opportunity to go and meet them.
Are members content with the list of suggestions?
Members indicated agreement.
We will get on with that.
I will come back to the committee with a proposal about the external meeting, which I assume will be, at least in part, informal.
Okay. We will now move into private session.
11:57
Meeting continued in private until 12:13.