Skip to main content

Parkinson’s Disease (Employment and Support Allowance)

Volume 546: debated on Tuesday 19 June 2012

It is a pleasure to serve under your chairmanship, Mr Leigh, and I am delighted to have secured this debate on Parkinson’s disease, which is a very important issue for many of my constituents and thousands across the country.

A few weeks ago, a number of people with Parkinson’s came to my surgery and I listened with astonishment to the account of the impact that Government welfare changes could have on their lives. They felt penalised for things out of their control. At a most difficult time in their lives, they were being dealt yet another blow due to the heartless system that is in place.

Before I come to my main points, I will set out some background about Parkinson’s disease. It is a progressive and incurable neurological condition. Although it can be well managed with medication and treatment, there is no prospect of a person’s condition improving over time, and there is currently no cure. It is a fluctuating and unpredictable condition. Everyone with Parkinson’s is different, but many people report that symptoms can fluctuate rapidly during the day or week by week. That can include sudden freezing, tremor, muscle-tightening and slowness of movement, or other less visible symptoms such as pain and fatigue. As chair of the all-party parliamentary group on chronic pain, I care passionately about the issue.

Parkinson’s onset is common in people in their 50s and early 60s, which presents an additional age-related barrier to employment for those affected. Many people with Parkinson’s are able and want to work, but many find it difficult to return to work because potential employers make discriminatory judgments about what it means to have Parkinson’s. Many people with the disease now receive employment and support allowance. Currently, claimants with Parkinson’s need to show that they have significant functional impairment that creates serious barriers to work to be eligible for ESA.

I was staggered to hear the stories of people with Parkinson’s—how their illness is dealt with and how the, to be frank, rather cold and heartless system in place fails to recognise the nature of their condition. It fails to understand what people might be going through and offers a fairly rigid process that is the same for any other group of people looking to claim benefits. The process that determines someone’s qualification for ESA uses a points category, as the Minister knows. People are assessed on different criteria and currently if someone scores 15 points they are found to be eligible for the work-related activity group. I will say more about that in a minute.

Through listening to people, such as my constituent Ian Barraclough, I found out the reality of the process, which, as is often the case, is somewhat different from the spin. Sadly, the assessment system fails to recognise, let alone understand, the condition of Parkinson’s. The group that visited my office outlined how there are good days and bad days. Sometimes they can feel fine and then suddenly freeze and their movements become much slower. However, that is barely recognised by the current system; it needs to be changed urgently. I ask the Minister: when do the Government plan to recognise the unique nature of Parkinson’s in the current welfare system and when will they adapt the claim form to ask specific questions relating to the fluctuating and progressive nature of this and other similar conditions?

As things stand, people with Parkinson’s are not asked their prognosis and what precautions they have to take in everyday life because of the sudden and unpredictable nature of their condition. For each of the simple tasks on that form, they are not asked if they can do something repeatedly, reliably or safely, or even how long it takes to perform a task. Surely those are common-sense matters to establish if an assessor is to make a judgment about ability to work. Parkinson’s UK and other charities representing those with fluctuating conditions have given their recommendations to the Department for Work and Pensions on how the claim form should change and they see no reason why those cannot be adopted as a matter of urgency.

I congratulate my hon. Friend on securing this debate, which I know will be much appreciated by all those caught up in the work capability process. The Minister’s stock response when questioned about it seems to be to imply that it needs time to bed in. Does my hon. Friend agree that we need the Minister now, after all these months, to step in, get a grip and take responsibility for the process, which is not only deeply unfair to those with serious conditions but is costing the taxpayer dearly through the appeals process?

I absolutely agree with my hon. Friend. It needs to be looked at now because people are suffering and it is costing the taxpayer in the long run. I will say more about that later. With respect to the Minister, the people with the condition are best placed to comment on what should be in the forms and what needs to be done to serve people with the disease best.

The nature of the work-related activity group also needs to be addressed.

Before my hon. Friend leaves the issue of forms and tests, proposals were brought forward, and were endorsed by Professor Harrington. The Minister promised what he calls a gold standard review in his response to Professor Harrington, which we were told would start early in the new year, to look at this and other issues about the test and descriptors. Does my hon. Friend agree that must now be done urgently? We are now in June and there is no sign that the review has even started.

I absolutely agree with my hon. Friend. That is the message I picked up from the visitors to my surgery. I will move on to when things changed and to show that they are already losing benefits.

That work-related activity group is for those people with Parkinson’s and other conditions and disabilities where it is recognised that the person cannot currently work but may, with considerable support over time, be able to move into employment, which is what the majority of those suffering with Parkinson’s want. Around 45% of people with Parkinson’s assessed for ESA are placed in that group. By common consent, far too many people are placed in that group because the process is very crude and simplistic—as my hon. Friends and I have outlined—and does not take into account the fluctuating and progressive nature of Parkinson’s. Indeed, I have heard of people with Parkinson’s being repeatedly reassessed in the WRAG.

Bearing in mind how Parkinson’s effects can change from day to day, surely those making decisions on benefits for sufferers must have a more sympathetic and helpful approach, rather than giving a clinical and cold decision?

I absolutely agree with the hon. Gentleman. As I said, people are reassessed in the WRAG with a computer-generated report churning out recommendations that the person should return to work in six, 12 or 18 months. To imply that someone with Parkinson’s will miraculously recover and get back to work is frankly insulting. The matter does not end there. The person then has to attend meetings with Jobcentre Plus, but the support that is meant to be offered to find work just is not there. Sometimes a person is told, quite bluntly, “Come back in six months or a year’s time; we know you’re not going to get a job.”

The final insult from the Welfare Reform Act 2012 is that many people with Parkinson’s in the work-related activity group are now losing their ESA after a year. That happened to my constituent, Ian Barraclough. Those who have paid their national insurance now have the safety net of the financial support from ESA whipped away from them. They have done the right thing yet have an uncertain future, and they now have to rely on a working partner or on eroding their modest savings because the state will no longer support them.

Herein lies the contradiction at the heart of the Government’s policy. They ruthlessly means-test people’s allowance and fail to have an adequate system in place to check the seriousness of a person’s Parkinson’s disease. When everything is finished, they tell people that they should recover and get back to work. For many people with Parkinson’s, this leads to a feeling of lack of worth and that they are not being listened to. A computer-generated system tells them that they are fit to work when that is not the case.

There are not many jobs to go to anyway. Even if a person feels they can, with support, do some work, many employers are not willing to take on people with Parkinson’s, as they know that the condition can change from day to day. Sadly, the Government fail to recognise that, and people with Parkinson’s do not get the welfare support they need and deserve. These cold-hearted, unnecessary and disgraceful reforms need to be looked at again.

Instead of being placed in the work-related group, it is my belief, and that of Parkinson’s UK, that many more people with Parkinson’s should be in the support group. That group is for those with the most severe functional impairment, where there is no expectation that they can return to work. However, currently only 27% of people with Parkinson’s are placed in that group. The Government need to extend the range of the criteria that allow people with severe and progressive neurological diseases to be placed in the support group. Yet again, the Government fail the compassion test with their dogmatic insistence on placing people in the work-related activity group. They fail to acknowledge that many people with Parkinson’s have reached a stage where they are not able to work again. Can it be right that someone whose tremor is so bad that they cannot hold a pen or do up their trousers is placed in the work-related activity group? Yet there are many examples of people affected by Parkinson’s who are being put into this group.

The Government need to think again. They need to recognise that, by the time they are assessed, many people with Parkinson’s have given up work because it is making their condition worse. They are not scroungers. They have worked hard all their lives. My constituent Ian Barraclough has paid his tax and national insurance for four decades, since he was 17. They need to stop means-testing and put more people with Parkinson’s, who are clearly unable to work, in the support group. They need to stop the heartless treatment of people with this condition. I have heard story after story in my office from people about how they had been treated; none had many positive things to say. At a time when they need society to support them, they think the Government are walking by on the other side.

The independent review by Professor Harrington, who was mentioned earlier, made recommendations last year for what he calls a “gold standard review” of the validity of the tests for those with fluctuating conditions and mental health, intellect and cognitive issues. Only now has the Department seemingly woken up to the need to do that. The longer that people with Parkinson’s are subject to these unfair tests, the greater the stress on them and their families. I urge the Minister to make this his priority—both testing thoroughly the validity of the descriptors and those put forward by charities, and revising the claim form.

I secured this debate because I was moved by the countless stories of despair in people’s lives, when what they need is hope and support. I hope the Government recognise that they are wrong, and have the decency to look again at their approach to people with Parkinson’s. I hope that they put in place policies that are decent, fair and just, rather than the current system that, disgracefully, leaves people with Parkinson’s feeling like second-class citizens.

It is a pleasure to serve under your chairmanship, Mr Leigh. I congratulate the hon. Member for Halifax (Mrs Riordan) on securing the debate.

I am glad to have the opportunity to set the record straight on many of the things the hon. Lady said. However, let me start by saying that we understand and are hugely sympathetic; we care very much about people with Parkinson’s. It is about providing the right mix of support for those people who can still remain in the workplace. It is clearly better that they should be able to do so. When they reach a point where that is no longer a possibility, it is entirely appropriate for the state to provide them with unconditional support. However, I am afraid that the picture painted by the hon. Lady was rather one-sided. I hope to set out why I think she has got it wrong.

The hon. Lady talked about cold-hearted and disgraceful reforms, and about a tick-box system. I gently remind her that that system was introduced by her party when it was in government. In the past two years, we have tried to improve and humanise it. When Professor Harrington first reported on this, he said that one of the great failings of the system we inherited was that there was not enough of a human dimension. He also said that we were not making enough effort—by “we”, he meant the system set up by the previous Government—to secure a proper mix of evidence about an individual. I will briefly walk the hon. Lady through the changes that we have already made. I will also explain to her what is happening about the gold standard review—the work on that has already started. I want to say a little bit about the support we provide to help those people who can still work to do so. On all those matters, she is wrong in the conclusions that she has reached.

Let me be clear and say that there is no such thing as the perfect system. We will never get this entirely right. I would love to say that we could, but these are difficult judgments to make. Often, we are encouraging people to take a step that they may be reluctant to take. If one loses belief in one’s ability to work, it may take some time to be persuaded that there is a way of getting back into the workplace. There is no doubt that this is a difficult process for all those who go through the work capability assessment and the reassessment process. We want to do the right thing. That is why we have introduced changes that increased the size of the support group, and why we have taken steps to ensure that we broaden the unconditional support available to people who are some of the sickest and most challenged in our society. However, we have to try to find the right balance.

I certainly believe—we certainly believe, and I thought it was the view of the hon. Lady’s party—that, where it is humanly possible, it is better either to get people back into the workplace or to help sustain them in the workplace before they eventually reach a point where that is no longer possible. Parkinson’s disease is a deeply distressing and difficult condition. As she said, it is a continuously degenerative condition—it fluctuates, but there is no cure. Of course, it is difficult and stressful for the families of those who suffer from it and for the sufferers themselves. However, it is certainly better—I am sure that all those who work with Parkinson’s sufferers agree—to provide support to keep those people in the workplace in some form of work for as long as possible. It is better for them in terms of quality of life and their overall morale, and it is likely to enable them to lead a longer and more fulfilling life with the condition.

Let me start with the process itself. As I said, I do not pretend that it is perfect, but I think that we have made significant improvements in the past two years. We have implemented all the recommendations in Professor Harrington’s first report. We took steps that humanised the process so that, instead of getting the classic computer-generated letter from Jobcentre Plus saying, “You will attend an assessment”, at each stage of the process, people get phone calls that explain in detail what will happen to them. We ask and encourage them to bring forward additional evidence.

We have rebalanced the process so that the work capability assessment plays a smaller role in the decision than was originally the case. We have done that because we want to take into account additional medical evidence about a person’s condition so that it is not just a computer-generated exercise. We must bear it in mind that the decision is not taken by the assessor who carries out the assessment, but by a decision maker in Jobcentre Plus, who looks at the assessment and the ESA50 form that the claimant has submitted setting out the nature of their condition, as well as any medical evidence that they wish to submit to Jobcentre Plus. We have introduced a process of automatic reconsideration—a second opinion in Jobcentre Plus—so that if we have got it wrong the first time, there is a quick, simple process for looking at that decision again. The process does not require the claimant to go immediately to appeal; they get a second opinion before they reach that stage, so I think we have a better process.

I cannot give the hon. Lady the updated numbers, because they are national statistics and will be published shortly. However, they are still too high. We are in dialogue with judges who preside over tribunals to look at the reasons for that. The reality is that a large number of people go to appeal because they have the opportunity to do so. Sometimes they fall into the fit for work group, which, typically, does not apply to people with Parkinson’s. Of course, they are losing money, as was set out in the process that the previous Government set up, so they have a particular reason to appeal. However, we are working as hard as we can to ensure that the decisions are right first time so that we minimise the number of tribunal successes for claimants. We want to get it right; I do not want people to have to go to tribunals to overturn decisions.

Is it not true that the last time we saw those figures, between 40% and 70% of people were successful on appeal, depending on whether they were represented or not?

The average figure was about 40% in the last figures that were published. That represents only about 6% of overall claimant numbers. In the case of decision making for Parkinson’s, people are much more likely to end up in a support group. On the average numbers for new claims going through a work capability assessment, 40% are entitled to ESA; 13% are put in the support group; 26% are put in the work-related activity group, and 60% are fit for work. That is the whole gamut of applications.

For Parkinson’s, 71% are entitled to ESA; 33% are in the support group; 38% are in the work-related activity group, and 29% are fit for work at that stage. We expect those who are fit for work—as they reapply and are reassessed as their condition develops—to enter the work-related activity group and then the support group. Of course, when people are not able to work again, they will receive support in the support group.

The hon. Member for Halifax mentioned the case of the constituent affected by the time-limiting proposal. She is right to highlight that. It applies only to people in the work-related activity group and only to people who have money in the bank or who have another form of household income. It establishes the same principle to contributory ESA as has always applied to contributory jobseeker’s allowance. In the way our welfare state works, if someone is a JSA claimant with another form of income or with money in the bank, we have always allowed them to get a contribution back in recognition that they themselves have paid contributions. They get six months of contributory JSA if they have other financial means. We have simply applied that same principle to contributory ESA. We have done that for reasons that the hon. Lady well knows. We face enormous financial challenges, and we have had to take back that part of our welfare state into the safety net that it was originally intended to be, and we have had to accept that we cannot afford to pay benefits to people who have got another form of household income. We debated that extensively in the welfare reform debates. I would rather that we had not had to make that decision, but financial necessity meant that was inevitable.

We are not talking about people who have no other means of support. They are not people whose condition has developed so that they can no longer realistically work again. They are people in the work-related activity group who may be able to return to work with help and support, but possibly not in the profession that they worked in previously. It may be that their condition has made that impossible, but that does not mean that it is impossible for them to work.

The Minister has given us figures for the proportion of people in the work-related activity group, but he has not really addressed the issue of Parkinson’s. The figures that the Parkinson’s Society presented suggest that 45% of claimants are being placed in the work-related activity group. Such people will have lost their previous jobs and are often in their 50s and early 60s. With the loss of the contributory benefit, they have to use up their retirement savings. Will the Minister address the specific issues around Parkinson’s?

Nobody has to spend their pension funds while they are of working age. Realistically, if people put aside money for a rainy day, and they become ill and lose their job, but have money in the bank, what else constitutes a rainy day? There will always be limitations on the amount and breadth of support that the state can provide through the welfare state. There were limitations under the hon. Lady’s Government; there are under our Government. The constraints on us are greater than on hers, because the money is not there any more. The reality is that the state has never provided unconditional support for everyone. There are limits inevitably created by an individual’s financial means.

We have only five minutes remaining, so let me touch on a couple of the other points that the hon. Member for Halifax raised. Let me give the context for the gold standard review. We invited the mental health charities and the fluctuating condition charities to bring forward their thoughts on how we could adapt the work capability assessment to reflect more closely what they believed to be the best approach. I am open about this. I want continually to improve this process and I want it to be as good and effective as possible.

What the charities came back with was extremely ambitious, not just in changing the current descriptors. It would involve rewriting and recasting the whole work capability assessment for not only fluctuating conditions or mental health problems, but physical conditions as well. It would involve re-engineering all the software and the assessment. It would probably be a two-year process and extremely expensive. Before we embark on that process—I am open to looking seriously at that—we need to understand the impact of the changes.

More than a year ago, I was told by the charities that if I implemented the internal review that I had inherited from the previous Government, with recommended changes to the work capability assessment, it would disadvantage particularly people with mental health problems. The advice that I had internally was that we had done a similar review to the gold standard review on the work capability assessment, as it was then structured, and it showed that more people with mental health problems would end up in the support group—the opposite of what the charities had said. History has shown that the internal advice was right and the charities were wrong, so I really want to get this right. I do not want to embark on a grand project to reorganise this without getting it right.

Work has started on the gold standard review. The terms of the project have been agreed. There are meetings between the Department and the charities virtually on a weekly basis at the moment. The work is being carried out over the next few months. We will judge the outcome of that work and ascertain whether there is a need to make changes or whether the charities have got it wrong. We have to do that. The hon. Lady would expect us to do that. In the meantime, we are looking to embed some of the recommendations that they have made into the way the ESA50 form is structured. If that enables us to tease out more information that is of value to the decision maker, informing the decision about a person’s condition, that is clearly the right thing to do.

The other point that the hon. Lady made was about the support not being there for people in the work-related activity group. That is not correct, either. Every single person in the work-related activity group on ESA has access to the Work programme tomorrow. They will receive specialist back-to-work support from one of the providers operating up and down the country—a mix of public, private and voluntary sector organisations, some with specialisms in fluctuating conditions. There is a specialism within each supply chain for those who are on ESA. One of the challenges that we have at the moment is trying to encourage more people to come forward and take advantage of that support. It is absolutely not the case that people cannot access help and support. Everyone has access to support, and it works.

We had a case a few months ago—not a Parkinson’s sufferer, but a gentleman from the north-east who was partially sighted and in a wheelchair. He had applied for thousands of jobs and got absolutely nowhere. He did not believe he could get back into work in a part of the country where the labour market is weak. He joined the Work programme and within a small number of weeks was in employment with a job and his life turned round. That, fundamentally, is what this is all about. I know it is difficult and sometimes challenging. I know that it takes many people through a process that they do not want to go through, because they do not actually believe that they can make a return to the workplace. Is it not better if we can help them get there? Even if they happen to have had to give up the profession that they have had for years, because their condition makes that no longer possible, surely it is better to get them back into doing something that they can do with their condition, that can keep them in the workplace for a few more years and give them a chance to live a more fulfilling life. That is what we are trying to achieve. We will not always get it right. The system is not perfect. It never can be perfect. I wish that it could be, but it cannot.

In conclusion, I can tell the hon. Lady that this is absolutely about saving lives, not saving money. I genuinely want to see more people given a chance to live a more fulfilling life. We will do everything that we can to help them, but those who cannot work again will get ongoing unconditional support.

Sitting adjourned without Question put (Standing Order No. 10(11).