Parkinson’s Disease (Employment and Support Allowance)

Linda Riordan Excerpts

Tuesday 19th June 2012 Westminster Hall

[Mrs Linda Riordan (Halifax) (Lab/Co-op)]

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.

[Jessica Morden (Newport East) (Lab)]

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?

[Mrs Riordan]

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.

[Sheila Gilmore (Edinburgh East) (Lab)]

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.

[Mrs Riordan]

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.

[Dr William McCrea (South Antrim) (DUP)]

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?

[Mrs Riordan]

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.