Work Capability Assessment Consultation

Toby Perkins Excerpts

Tuesday 5th September 2023 Commons Chamber

[Mel Stride]

I have addressed the issue of Access to Work—what a significant programme it is and the recent improvements in the processing of those particular awards. On economic inactivity, I make two points. First, compared with the EU, the OECD and the G7, economic activity overall is below the average across those different groups. Secondly, it has declined by about 360,000 since the peak that occurred during the pandemic, and that in substantial part is due to the policies of this Government.

[Mr Toby Perkins (Chesterfield) (Lab)]

It is very noticeable that the Secretary of State did not answer the question of the hon. Member for Wellingborough about why he believes that there has been a trebling of the number of people who are now getting the maximum verdict under the work capability assessment. I have helped many of my constituents who have had problems with their WCA, and not one of them has come to me and said that it is the WCA that is keeping them out of work. Many of them have said that it is not nuanced enough to understand the issues, and I welcome the fact that it is to be replaced. However, can the Secretary of State tell us what assessment he has made of how many people are likely to win their appeals after the changes that he has brought in, and what percentage are winning them now? At the moment, huge numbers are winning their appeals, which makes it clear that the work capability assessment is not working.

Oral Answers to Questions

Toby Perkins Excerpts

Monday 8th November 2021 Commons Chamber

[Dr Coffey]

I was not the only person to cheer loudly when the Chancellor announced to the House that we were increasing work allowances and reducing the taper rate to 55% no later than 1 December. I am pleased to inform my hon. Friend that the latest information I have is that we intend to try to bring that in from 24 November, which means that an extra 500,000 claimants will benefit, even more than might have been predicted just a couple of weeks ago.

[Mr Toby Perkins (Chesterfield) (Lab)]

The Department for Work and Pensions makes substantial efforts to assure itself that people who are on universal credit and not in work are entitled to that payment, either because of the disabilities that they have or because they have made every possible effort to find work. On that basis, why would the Government reassure themselves that it is okay to plunge those people into poverty, when they have done everything that the Government have asked them to do in terms of trying to find work? Why not just reintroduce that £20 payment?

Universal Credit: Effect of Child Element on Separated Parents

Toby Perkins Excerpts

Wednesday 4th November 2020 Westminster Hall

[Mr Toby Perkins (Chesterfield) (Lab)]

I beg to move,

That this House has considered the effect of child element of universal credit on separated parents.

It is a tremendous pleasure to serve under your chairpersonship, Mrs Murray.

There is a lot of evidence that children who have positive relationships with both parents are happier, healthier and more successful. When families choose to have children, in the vast majority of cases they hope and expect to stay together as a couple for the foreseeable future and the rest of their child’s childhood, but alas, it does not always work that way. A sad fact of life is that parental separation is commonplace: there are 2.5 million separated families with almost 4 million children across Great Britain.

Separation is in itself a traumatic experience for everyone involved, in particular for the children. It is also an incredibly financially stressful time for parents. It can lead to mental health issues, depression, homelessness and many other difficult consequences. It is therefore incumbent on all of us in this place to do all we can to protect children in such circumstances and to support them to have as stable and successful a relationship with both parents as possible.

The process of separation can often lead to considerable hostility between the parents, and that can spill over into financial disputes. Through the Child Maintenance Service, the Government already involve themselves in supporting the process of one parent providing money to the other, but that still leaves the thorny issue of who is eligible to receive child benefit. That issue also has consequences for the housing allocation and as a gateway to other benefits.

One of my constituents, Lee Waterhouse, has two such issues. He and his former wife were in dispute over some matters. I do not propose to go into the detail of their case, but while the Government will allow parents who share care for two children to agree to receive child benefit for one child each, when there is not agreement, as in this case, it means that one parent is considered to be the parent with care and the other parent neither receives child benefit nor is eligible to be housed as a parent with caring responsibilities—that parent therefore becomes eligible to be charged the bedroom tax.

That issue affects Lee, as he is classed as having a spare room, though he needs somewhere for his children to be when they stay with him for about half the week. The Social Security Advisory Committee, which examined this subject in October 2019, acknowledged that one of the most difficult issues for successive Governments has been to design and operate an effective financial regime for separated parents.

The committee’s report went on to recognise that it is difficult for the social security system to reflect complexities, especially of shared care arrangements. One recommendation was that there was a strong case for the Government to take a more strategic approach to separated parents and social security. The committee outlined that it felt the welfare system needed to be updated, given that a key principle is that it should centre on the welfare of the child, in line with the United Nations convention on the rights of the child, but that in doing so it should consider the impact on the child’s welfare of the living standards of both parents—not just the parent with the main responsibility—and their ability to share care.

The report went on to highlight that the current system does not meet those principles, pointing to the presumption that there is one main carer, despite the range of shared care arrangements in place within separated families. The report stated that, as a result, some parents without main caring responsibilities are being pushed into hardship, may face poor work incentives and are unable to share care of their child, which may not be in the best interests of the child’s welfare. I have to ask the Minister, what is the merit of the state deciding who is the main carer in situations where children are shared equally between two parents?

The committee pointed to Scotland as an example of best practice, given that the Scottish Parliament has established a cross-party working group looking at separated parents. It was recommended that the Department for Work and Pensions should join up with that group to ensure a joined-up approach and to learn lessons from the progress made so far. Chesterfield Borough Council has enabled Mr Waterhouse to have a discretionary housing benefit allowance payment that can be used in cases where the Government’s unfair bedroom tax applies. However, the Government are specific that it is a transitional payment to allow claimants to make arrangements to move into more appropriately sized housing. In this case, Mr Waterhouse’s property is exactly the right size when his children are with him. Although we have managed to get Chesterfield to extend the discretionary housing benefit, relying on that means that the Government have outsourced responsibility for the fairness of welfare policy on to Chesterfield Borough Council rather than the Department for Work and Pensions taking the responsibility, which is where it should reside.

In addition to having the bedroom tax imposed upon him, Mr Waterhouse is unable to receive the housing portion of child benefit, given that his children live with him on what is seen as a part-time basis, albeit 50% of the time. Given that my constituent is unable to work owing to a long-term mental health condition, he is now struggling to make ends meet. That is without the additional stresses placed on him by the current benefits system. He does not qualify for any child benefit entitlement. Again, as he has his children on a half-time basis, despite the lack of funds, my constituent is expected to care for his children when they stay with him. From what he has put on social media and from reading the evidence from many other parents in a similar situation, it is clear that his situation is not unique. He is often forced to go without to prevent his children going hungry.

It is difficult to quantify the scale of the situation as there is currently poor quality data available in relation to parents without main caring responsibility. The family resources survey in 2017-18 estimated that as many as 30,000 young non-resident parents were likely to be affected by the housing benefit shared accommodation rate policy. I understand that the situation is a difficult one, particularly in circumstances where parents are in a dispute over custody or child maintenance payments.

In the Social Security Advisory Committee report that I referred to earlier, the committee believed that a cross-departmental working group should be set up to instigate urgent action on these issues. It suggested that such a working group should consider the impact of policy on the living standards of both parents and the net impact of that policy on children’s welfare. It should consider how the social security system could better reflect modern shared care relationships that are not detrimental to the parent without main caring responsibility. What actions have the Government taken as a result of the Social Security Advisory Committee report and has the cross-departmental working group been set up to instigate urgent action on the issues that the committee raised?

The committee went on to say that the group should also consider how to ensure that the benefits system and interactions with the child maintenance formula do not unduly result in poor work incentives or push one parent into hardship, with all the impact that that would have on the children, and it should consider how to ensure separated parents can easily access the right information and support from the social security system. The Government’s sorting out separation website was a welcome step, but much more needs to be done to help both parents effectively navigate the complexity of the system. The committee also suggested that the social security system and interactions with the child maintenance system affects the hardship of both parents, including those not classified as having main caring responsibility, while also affecting and creating hardship for children.

When examining the housing element of universal credit, the committee recommended that the system should be reformed to enable young parents under 35, who share custody of their children, to have them to stay overnight without imposing a financial penalty. Another key recommendation of the committee was that the Department for Work and Pensions should consider options for the system to support all non-residential parents with more than one child to stay with them overnight.

I do not underestimate the challenge, given that it is difficult to design a system that takes into account every personal circumstance, but I do say that there should be safeguards in place to ensure that any social security system is not open to abuse and does not work against the interests of separated parents when one parent has decided not to support a collective approach. We also need to make sure that children are protected in the eventuality that one parent is negligent in carrying out their responsibilities, and I recognise that striking a balance is a difficult matter, but it is incredibly important. It is clear that the social security system is currently not fit for purpose to reflect the complexities of modern family life and that reform is necessary.

In summary, it cannot be right that the benefits system forces parents already in dispute to fight it out between themselves as to who receives the money needed to support their children. Nor can it be right that parents who do the right thing and want to care for their children are hit with the bedroom tax for having their child’s bedroom empty for half the week. In addition to the Minister telling us what the Government have done in response to the Social Security Advisory Committee report, will he tell us what steps they are planning or can take to ensure the equity of payments in these situations? Is the gender of the parent a factor that the state considers when deciding who should be regarded as the main carer? Does the Minister think that the Government do enough to support separated fathers to continue to be there for their children? Will he explain why it is not appropriate for benefit payments to be shared as a matter of course when parents are sharing responsibilities rather than relying on parents coming to some mutual arrangement? I do not underestimate the difficulty in finding arrangements that work fairly and equitably for all sides but will the Minister tell us whether there are any specific concerns about an assumption towards shared payment?

Protecting children who have suffered the trauma of a divorce is something that we should all feel passionately about. Supporting their parents when they are suffering ill health is one of the most tangible ways that we can deliver on that. The report has exposed the failures in the system so I hope that this debate and the Minister’s response can be a step towards getting greater fairness and security for many of the 3.9 million children who will look to us to act.

[The Parliamentary Under-Secretary of State for Work and Pensions (Will Quince)]

It is a pleasure to serve under your chairmanship, Mrs Murray, on your first occasion in the Chair. I thank the hon. Member for Chesterfield (Mr Perkins) for securing a debate on this hugely important issue.

The hon. Gentleman rightly raises some of the challenges faced by separated families. I have listened very carefully to the points that he has made. Following this debate, I and the DWP Lords Minister, Baroness Stedman-Scott, will be happy to meet him to discuss the issues further. Baroness Stedman-Scott has responsibility for the Child Maintenance Service and the reducing parental conflict programme, so there is clear crossover there.

I will start with the principles of universal credit. One of the core principles is to enable families to manage their own affairs. We believe that the current arrangements whereby one designated party receives the whole child element payment are fair and allow families to make their own decisions on how it is used.

To touch on the most recent support, we have taken immediate action to protect jobs and incomes in the face of the pandemic and the Treasury analysis of these measures is that they have been targeted at those most in need. We have injected more than £9.3 billion into the welfare system, including an increase to the universal credit standard allowance of up to £1,040 this year and we have increased the local housing allowance rate to the 30th percentile of local rents from April, so for UC and housing benefit claimants, we are giving additional financial support for private renters to support them through this difficult period. For an average family, that is worth about £600.

Yesterday, we announced that the current easement of the suspension of the minimum income floor in universal credit that was due to expire on 12 November will be extended to the end of April 2021. This sits alongside a generous package of additional support already announced by the Chancellor, including further grants through the self-employment income support scheme and an extension to the furlough scheme until December.

The hon. Member for Chesterfield spoke about who receives the child element of universal credit when separated parents share custody, including arrangements where it is shared 50:50. Where a separated couple have joint custody for their children, the parent who receives the child element is the one the child normally lives with, but if the child normally lives with both, it is the parent who has the main responsibility for the child who receives it. That is decided by the parents, or by a Department for Work and Pensions decision maker if the parents cannot agree or the decision maker does not think that the nomination accurately reflects the arrangement. It is important to stress that similar rules apply to child tax credit and to child benefit, both of which are administered by Her Majesty's Revenue and Customs.

I appreciate the points the hon. Gentleman made and I have huge sympathy with some of them. This is a hugely complex situation and there are no simple or easy options, as he said. There are many different kinds of childcare arrangements that families can come to; that is why our policy is to pay the child element to one parent, and then leave it to families to decide how it is shared between different parties who care for the child or children. Our view is that separated families are able to make their own private arrangements regarding the sharing of resources for children without state intervention.

It might assist and add some important context if I set out some details of how universal credit awards are calculated. Universal credit is a unitary benefit made up of different elements. There is a standard allowance, plus additions to help with additional expenses; for example, the cost of raising children comes via the child element. These elements are all subject to prescribed maximum amounts and paid as a single monthly award, which is calculated at the end of a claimant’s assessment period. Consequently, certain elements, such as the child element, cannot be ring-fenced or separated from the monthly award. Attempting to ring-fence individual components or extract them from the calculation would ignore the all-important interaction between the different stages of the calculation and would not correctly reflect how universal credit is designed in legislation and how it operates in practice.

I understand the case the hon. Gentleman made for his constituent, and we have corresponded on it. There is a 50:50 shared care arrangement, but the ex-partner receives the child element for both children. I understand that that means the constituent does not receive housing support for the additional bedroom that he has. As I have pointed out in correspondence with the hon. Gentleman, we have provided resources to local authorities so that additional financial support for those facing a shortfall in meeting their rental housing costs can be given through discretionary housing payments. We have provided about £1 billion in discretionary housing payments to local authorities since 2011, and they are designed to help the most vulnerable and disadvantaged to meet their housing costs.

[Mr Perkins]

I seek clarity on that point. It is the understanding of Chesterfield Borough Council that discretionary housing payments are a transitional payment for local authorities to work with vulnerable people so that they can get themselves out of the position of having a spare bedroom. In this particular case, and many others like it, however, it is not a transitional arrangement. The man will have a long-term need to accommodate the children. The council is under the impression that the Government do not want it to use discretionary housing payments as a long-term support. Has the council has misunderstood the guidance? If it has not, what does the Minister suggest for this case?

[Will Quince]

We have provided £180 million in discretionary housing payments this year; that is an additional £40 million in this financial year. We deliberately do not give prescriptive guidance on how discretionary housing payments should be spent by local authorities, because they are precisely that: discretionary. They are there for the local authority to use its discretion to support people who sometimes face very complex situations at the point of need. That discretion is deliberately with the local authority. We also do not prescribe how long discretionary housing payment can be paid. In cases such as this, people may have to apply multiple times for a discretionary housing payment, but we do not say that payments can only be, for example, handed out once, twice or three or four times. It is wholly at the local authority’s discretion.

Just one more point: I gently suggest to the hon. Gentleman that, even if the Government were to agree with his suggestion and I were minded to agree with him—I stress that we do not agree—any proposed change of this nature would require significant structural system change or a manual intervention, which would take considerable departmental resource, along with any legislative change. The Department simply does not have any capacity to make that kind of change at the moment.

To add some context, we have had to divert huge amounts of resource across the Department to the processing of claims throughout this unprecedented period, with claims for universal credit going up from 2.2 million to some 5.7 million. It is important to point out, despite that unprecedented shift, that more than 94% of people were paid in full and on time. We simply do not have the capacity to make big structural system changes, even if we were minded to agree with the hon. Gentleman, but we are committed to providing a strong safety net for those who need it.

[Mr Perkins]

The Minister talked about the Government wanting parents to work together and leaving it to parents to decide, but clearly, this is not a unique situation. After a separation, there is often contention and disagreement between former partners. When both are looking after the children 50:50, how is it fair for the Government to decide that one of those parents is the main carer and therefore gets the support with housing, child benefit and the gateway that that opens, and the other parent gets nothing? It seems patently unfair. To dismiss that by saying that is how the system is and it would be difficult for the Department to work on it in a different way is not really good enough, not just for Mr Waterhouse but for many others in that situation.

[Will Quince]

The hon. Gentleman hits the nail on the head when he says that these situations are extremely complex. Every family is different. In the vast majority of cases, families come to individual arrangements that work well. The answer cannot always be state intervention. He says that it is not fair. That may well be the case; in many of these situations, there is an element of unfairness. There are often situations of family breakdown and separation that are hugely regrettable and there are situations that are deeply unfair, but we, as the state, try to encourage families to come to arrangements themselves. We have programmes such as the reducing parental conflict programme and the Child Maintenance Service precisely for situations where parents are not able to come to individual arrangements themselves, or need the support of the state to do so.

The question comes down to this: how much state intervention and involvement do we want? That is why I said I am happy to sit down with the hon. Gentleman and hear more about his constituent’s case and about his ideas for how we might reform the system. I just gently say to him that fundamental or large-scale system reform would not be an easy or quick thing to do. That does not mean we should not explore it or look at it for the future, but it is certainly not something that we could do in the short-to-medium term. As a Government, we are always looking to see what more we can do to support families and to support separated families, be that one family unit or a unit migrating into two or multiple units.

[Mr Perkins]

I remind the Minister of the question I asked and invite him to respond. Is the gender of each party a deciding factor in who ends up getting the original payment? Certainly, the view of Mr Waterhouse and many others is that there is a sort of natural bias in the system, so that where both parties share the care, the woman is treated as the main carer. Is that how the system works, and what more can he tell us about that aspect of it?

[Will Quince]

My understanding is that that is not the case, but I think that if the hon. Gentleman and I sat down with officials from the Department, it would give him a level of comfort about the procedure when individuals from separated families cannot reach an agreement, and how the DWP decision maker will consider all the facts of the case and then come to a conclusion and make a judgment. I would be very happy to have that meeting with him and with officials to go through that process.

As I said, we are deeply committed to providing a strong safety net for those who need it, which is why we continue to spend over £95 billion a year on welfare benefits for people of working age. We believe that families should be free to make their own decisions about how their benefits are used, without Government intervention. As I also said, there are no current plans to change arrangements for the payment of child benefit to separated families. I appreciate that that is not the response that the hon. Gentleman hoped for, but I repeat that I and the DWP Minister in the Lords, Baroness Stedman-Scott, will be happy to meet him.

This Government will continue to reform our welfare system so that it promotes work as the most effective route out of poverty, and is fairer to those who receive welfare and to the taxpayers who pay for it.

--- Later in debate ---

[Mr Perkins]

I am never knowingly quiet, Mrs Murray. [Laughter.]

I appreciate the Minister’s response and his offer to continue our dialogue after this debate. I recognise that creating a system that works in individual cases is difficult, but there is inherent unfairness at the heart of this system, and a real danger that it will make it more difficult for fathers who are on benefits and who may suffer with mental health or physical health problems, or who are for whatever reason reliant on the benefit system, to be the parent that they would like to be. We recognise that we have a safety net to support parents and families and their children, so investigating whether there is more that can be done to allow for the reality of the situation, which is often that responsibility for children is shared and that therefore benefits need to be shared, is something to work towards. I will take the Minister up on his offer to meet further.

Question put and agreed to.

[Mrs Sheryll Murray (in the Chair)]

Order. In order to allow the safe exit of honourable Members who have participated in this debate, and the safe arrival of those Members who will participate in the next debate, I am suspending the sitting for two minutes.

Oral Answers to Questions

Toby Perkins Excerpts

Monday 27th January 2020 Commons Chamber

[Dr Coffey]

I actually think that the spare room subsidy was an important part of a change to deal with the challenges of homelessness, which we have just been discussing. I absolutely believe that we will continue that policy, but, as ever, when there are problems, part of the role of the discretionary housing payments is to deal with them. The hon. Gentleman will be aware—I think I am right in saying this—that the Scottish Government have not introduced that policy quite yet, but intend to do so later in the year.

[Mr Toby Perkins (Chesterfield) (Lab)]

Anyone who has visited a food bank or has met homeless people on their streets will know that welfare policy is the No.1 reason for the appalling rate of homelessness in our towns. As a simple starting point, if the housing element of universal credit were paid to landlords, we could make a start towards ending the appalling problem of homelessness that welfare policy is currently inflicting on our streets.

[Dr Coffey]

As the hon. Gentleman knows, it already can be.

--- Later in debate ---

[Will Quince]

It is a one-off payment, so, in effect, it is treated as income as it would be for tax purposes. Over the course of a year it would of course balance out. It is important to stress that under the legacy benefits system it would have attracted a marginal tax rate of 91% maximum as opposed to only 75% under universal credit.

[Mr Toby Perkins (Chesterfield) (Lab)]

The Secretary of State’s answer to my earlier question about homeless people’s universal credit payments going to their landlords missed the point completely. Many people who are homeless have alcohol or drug abuse issues. Giving the money to them directly is not solving the problem; it needs to go to the landlord. Rather than saying that it is a choice for them, that choice should, in many cases, be made for them.

[Dr Coffey]

I will have to repeat the answer: that can happen.

Oral Answers to Questions

Toby Perkins Excerpts

Monday 7th October 2019 Commons Chamber

[Mr Speaker]

I call Toby Perkins. [Interruption.] I did not call a Conservative Member because I know that the hon. Member for Chesterfield (Toby Perkins) is normally paying the closest possible attention, and none of the hon. Members sitting on the Government Benches wished to contribute to the proceedings. I therefore alighted on the oratorical opportunities offered by the hon. Gentleman.

[Toby Perkins (Chesterfield) (Lab)]

T6. There is literally nothing else to say about Conservative welfare policy. The truth is that anyone who has met people who work in a food bank, or people who work with the homeless, will recognise that there is a direct link between welfare policy, the sanctions regime, and the increase in homelessness and poverty. What serious work will the Government do to address that link—or will they at least have the decency and honesty to admit that that increase in homelessness and poverty is an absolutely accepted part of Government policy?

[Dr Coffey]

That is simply not the case. The first time that I became involved with a food bank was in 2006, when people were falling between the gaps. One of the things that make me proudest of the Conservative Government and the coalition is that people are better off in work than out of it unless they cannot work, and we have championed the vulnerable. Universal credit is ensuring that people can have more and more income, and I should have thought that the hon. Gentleman would welcome that.

Recognition of Fibromyalgia as a Disability

Toby Perkins Excerpts

Tuesday 15th January 2019 Westminster Hall

[Toby Perkins (Chesterfield) (Lab)]

I beg to move,

That this House has considered the recognition of fibromyalgia as a disability.

It is a pleasure to open the debate and to serve under your chairmanship, Mr Bailey. I am delighted that so many hon. Members have come to support the raising of awareness of a crucial issue. I thank the Backbench Business Committee for selecting the topic for debate, and particularly the hon. Member for Southend West (Sir David Amess), for his support in obtaining and promoting the debate.

I want to pay tribute to two of my constituents, Adrienne and Leann Lakin of Chesterfield, and all the fibromyalgia campaigners who bang the drum relentlessly to ensure that sufferers’ voices are heard. Many intend to come to witness the debate. Their campaigning has been instrumental in persuading other hon. Members to attend or to speak out about fibromyalgia. I was proud to present a petition in Parliament, which reached more than 100,000 signatures on change.org, calling for fibromyalgia to be recognised as a disability and for greater awareness of and investment in treatment. I recognise that the context of the debate spans the responsibilities of both the Department for Work and Pensions and the Department of Health and Social Care, and I hope that the Minister will be able to pass on to her counterpart the topics raised in the debate that do not fall within her purview.

Many in this country are ignorant about what fibromyalgia is, but it is a condition that many people suffer from. It is one of a group of conditions often referred to as invisible illnesses, but sufferers live with its consequences every day of their lives.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I warmly congratulate my hon. Friend on securing the debate. His use of the word “invisible” was telling. Besides raising awareness, is not the debate about getting to the stage where fibromyalgia is diagnosed more easily?

[Toby Perkins]

That is an excellent point, to which I shall return. One of the major problems that fibromyalgia sufferers experience is that it takes so long for their condition to be diagnosed. I shall talk more about what we can do to get earlier diagnosis and better understanding throughout general practice.

Fibromyalgia sufferers experience many different kinds of symptoms. Often there is a heightened sensitivity to pain and extreme muscle stiffness. They often struggle to sleep, which exacerbates their muscular difficulties, and experience extreme fatigue. Sufferers also experience cognitive difficulties—not just headaches but problems with mental processes, known as fibro-fog, and an inability to process things as they did previously. As if those things were not enough, fibromyalgia sufferers can be struck down with irritable bowel syndrome too. A panoply of symptoms means that people have a terrible time. However, often, when those symptoms are dealt with in general practice they are masked as other conditions. Many time-consuming treatments are undergone, but they do not get to the root of things.

[Paul Blomfield (Sheffield Central) (Lab)]

I congratulate my hon. Friend on securing the debate. Sara, a young mother in my constituency, has fibromyalgia, triggered by the birth of the youngest of her three children. She describes a pain so severe that she cannot even hug her kids. She says the personal independence payment assessment process stripped her of her dignity, because of a lack of understanding. Does my hon. Friend agree that there is a need to address unintentional ignorance and a lack of knowledge about what a debilitating illness fibromyalgia is?

[Toby Perkins]

I absolutely agree. My hon. Friend has given a powerful example. Meeting someone with fibromyalgia—this is even more true of those who live with a sufferer—we get to understand what it is like to walk a mile in their shoes. One reason why we asked the DWP to respond to the debate is that, on the face of it, sufferers do not appear to be very ill, but when we hear testimony such as that of my hon. Friend’s constituent we may understand what it is really like.

[Wayne David (Caerphilly) (Lab)]

Like other hon. Members, I have met constituents at my advice surgery who have complained that their fibromyalgia has not been taken seriously. All too often, not only GPs and clinicians but the Department for Work and Pensions among others see it simply as aches and pains. It is important that, as my hon. Friend has been doing, we develop the argument that it is not something to be dismissed easily. It is far more than that.

[Toby Perkins]

I could not agree more with my hon. Friend. I think that there are many hon. Members here for the debate, on such an important day in Parliament when there are many alternative demands on our time, because we have had a powerful experience of what our constituents go through.

[Rachael Maskell (York Central) (Lab/Co-op)]

Does my hon. Friend agree that the fluctuating nature of fibromyalgia means that the DWP system is not sensitive enough to respond to the challenges faced by those who experience the condition?

[Toby Perkins]

I agree, and I think that that hints at a wider problem in the benefits system assessment regime, which finds it difficult to deal with fluctuating conditions, whether mental health conditions or muscular problems along the lines of fibromyalgia, that are better on some days, or manageable with a huge amount of medication, so that people can get out of the house and may appear better than usual on the assessment day.

[Paul Masterton (East Renfrewshire) (Con)]

I congratulate the hon. Gentleman on securing the debate. My constituent Susan says that the pain she suffers is so bad that the only time she does not feel it is when she is asleep. She mentions that it is not just that the condition itself is not picked up properly within disability assessment, but that it exacerbates other conditions she has, making them even more extreme. Does the hon. Gentleman agree with that point about wider understanding of the effects of the illness within the disability system?

[Toby Perkins]

I entirely agree. The impact on the rest of the family includes caring responsibilities that fall on them, restricting their ability to develop their earning potential. The consequence is that the entire family of a fibromyalgia sufferer will suffer too. It is a powerful point.

Estimates suggest that as many as one in 20 people suffer from fibromyalgia. Since I secured the debate I have been contacted by many MPs—there have been many interventions in the debate—and by constituents and other members of the public. People say that at last someone is talking about the condition, which they or their partner have suffered with for so long, feeling that no one understood. The feeling of being misunderstood is familiar to many fibromyalgia sufferers. Often employers are baffled as to why on some days an apparently healthy member of staff is the life and soul of the party, but on others cannot turn up for work because they are crippled by their condition. By the same token, those employees often feel tremendous guilt that a condition that decimates their ability to contribute keeps striking them down. That often leads them to conclude that they must go into work even though they are in extreme pain, frequently making themselves even more ill in the process. It truly is a vicious circle.

Fibromyalgia sufferers are also misunderstood, as we have already heard, by those who assess them for benefits such as PIP and employment and support allowance, as their conditions are variable and can often be managed in the very short term. Many fibromyalgia sufferers have taken pills to help to manage the pain and support them through an ESA assessment, only to discover that the assessment outcome bears little relationship to their daily experience of living with fibromyalgia.

I have had constituents speak to me about the fact that the tablets they took to enable them to get in a taxi to travel to their assessment and get through that assessment for an hour meant that, when they got home, they were in bed for days afterwards. I think they thought to themselves, “If only the assessor could see me now, half an hour or an hour after the assessment, they would see why I’m unable to work. I’ve been able to get myself through that assessment, trying to comply with the system, but to my own disadvantage.”

[Jonathan Edwards (Carmarthen East and Dinefwr) (PC)]

The hon. Gentleman is making an extremely powerful speech. As I will say in my contribution, my wife is a fibromyalgia sufferer. Is it not the case that stressful experiences actually exacerbate the condition, leading to hugely damaging flare-ups?

[Toby Perkins]

That point is spot on, and made from the powerful perspective of someone who knows what it is like to live with someone experiencing fibromyalgia. I will come on in a moment to some of the other things that are believed to be triggers for fibromyalgia, but the hon. Gentleman is absolutely right. We all know—it is one of our worries about the assessment regime within benefits—the stress of that process: the stress of going through the assessment, of believing that benefits will be taken away or of wondering how they will feel the next day. It is an incredibly unhelpful situation where people’s income is tied to their being ill, so they wake up almost hoping to be ill to justify the income, while simultaneously wishing they were better because they want to be able to contribute. That is something that is known much more widely in our benefits system, but fibromyalgia sufferers are very familiar with it.

[Mary Glindon (North Tyneside) (Lab)]

I congratulate my hon. Friend on securing this debate and on the awareness day that he hosted last year, which was a very informative and moving event. Given all that has been said about sufferers, does he agree that, without the help of support groups such as the one in Newcastle, people with fibromyalgia would perhaps not have any outside support to help them with benefit queries or managing their condition? Those are voluntary groups that have been set up, but should we have more statutory groups to help people with the condition?

[Toby Perkins]

I pay tribute to the voluntary group that my hon. Friend speaks of. We all recognise the incredibly important role that voluntary groups of that sort play, and it is true that, when someone has a condition that is so misunderstood, speaking to other people who have experienced it and to families supporting people who have experienced it is important. I think we are also all conscious that, in an era where local government funding has been cut, often charitable and voluntary groups are the ones seeing their funding cut. Those groups often do not require a lot of funding, but a small amount of core funding enables them to function. That is something that many of us are concerned about.

I am conscious that there are a number of people who have put in to speak. I am very happy to take interventions, but I also do not want to cut into other people’s time, so I will crack on a little bit. Obviously, if there are other pressing issues, hon. Members are free to raise them.

It is hardly surprising that so many employers and assessment staff misunderstand fibromyalgia when, as has been reflected on already, it is so often misdiagnosed by the medical profession. Most fibromyalgia sufferers will live with the condition for over a year before it is diagnosed, and it is often the diagnosis of last resort, which means that sufferers will often have gone through many painful months of ruling out various other explanations and taking other kinds of drugs not relevant to their circumstances before the true cause of their pain is articulated.

[Liz Twist (Blaydon) (Lab)]

Does my hon. Friend agree with my constituent, Karen Mitchell, who has fibromyalgia, that medical help and support is very variable, that there is great variation in how well fibromyalgia is recognised and that we need to ensure that consistent and helpful treatment is available?

[Toby Perkins]

I do. My hon. Friend will be pleased to know that I will be hot-footing it from this debate to health questions, where I have tabled a question about diagnosis of fibromyalgia in general practice. Other hon. Members might wish to leap on the back of that question and make their own contributions, and the one that my hon. Friend has just made is powerful. There is variability of diagnosis, and I have met a number of different sufferers who have had different kinds of treatment and, as a result of the treatment they have had, present very differently now. That is something I have seen with my own eyes.

Even with all the medical advancements that have been made, fibromyalgia is a condition without a known cause or a known cure. There are many factors thought to contribute to the condition, including abnormal processing of pain due to chemical changes in the nervous system or imbalances in chemicals in the brain such as serotonin, dopamine and noradrenaline. The condition often appears to run in families, suggesting that there is a genetic predisposition to it and, as we have just heard from the hon. Member for Carmarthen East and Dinefwr (Jonathan Edwards), stressful events can be a trigger.

Many people who are concerned that general practice training, which by its very nature is general, is inadequate on fibromyalgia and that that is a cause of the delays in diagnosis. The petition also calls for greater research into fibromyalgia. With over 70,000 diagnosed patients having made claims for PIP, it is clear that this is a widespread problem, but that number is estimated to understate the number of fibromyalgia sufferers by at least 90%.

[Rachael Maskell]

Does my hon. Friend agree that it is vital that there is a clinical specialist in fibromyalgia within each health economy, whether that is led by a general practitioner or a specialist practitioner, to support people with fibromyalgia right through the pathway in accessing services and in managing their own healthcare?

[Toby Perkins]

I recognise that, and I also recognise how stretched our national health service is more generally and the need for us to have that specialist help as early as possible. One thing that is becoming clear is that the delay in diagnosis allows the condition to get worse, which adds to the cost of treating it further down the line. Anything that can be done to speed up the diagnosis will have many economic benefits, as well as medical ones, down the line.

While the suffering and economic cost of treating and supporting fibromyalgia sufferers is so large and the knowledge base on what causes it and how to treat it is so small, this is an area that is ripe for further research. In the Library note we received before the debate, we were told that in the past five years, funding applications for around £1.8 million worth of research were approved. In a single year—I appreciate why this is a false comparison, but it provides some context none the less—the UK spends over £400 million on cancer research. Of course, I do not for a second underestimate the value of research into cancer, but given the problems that fibromyalgia causes and how long patients will live with it, surely we should be spending more than 0.5% of the investment into cancer research on researching the grave and widespread menace that is fibromyalgia.

[Scott Mann (North Cornwall) (Con)]

Will the hon. Gentleman give way?

--- Later in debate ---

[Toby Perkins]

What can we do to raise awareness of fibromyalgia? I think we will hear from the hon. Gentleman particularly on that subject.

[Scott Mann]

I am grateful to the hon. Gentleman for bringing this debate to the Chamber; as the number of people here shows, many of us have been written to by our constituents. I did a little bit of research, and it seems to me that the USA and Sweden both have good research teams looking at this condition and how it might be helped. Does he think the UK Government should look at what Sweden and America are doing on this particular disease to see how we might be able to help out?

[Toby Perkins]

I do. While Sweden and America have very different kinds of healthcare system, the hon. Gentleman is right that they both have world-leading research capabilities. Clearly, there is a big question for future UK medical research about our leaving the European Union; a great deal of medical research is much easier to do when we have 28 countries paying into it, rather than just one. However, whether collectively with other countries or individually, we have absolutely world-class medical research capabilities in this country and we should contribute towards the global knowledge base on fibromyalgia. The hon. Gentleman makes an important point in saying that.

What can we do to raise awareness of fibromyalgia? Today’s debate is the latest step towards doing just that. We have already had the presentation of the petition, and the fibro campaigners also held a reception in Portcullis House. Around 25 MPs came along to hear more about what life with fibromyalgia is like, and I was delighted that Adrienne Lakin and Billy Mansell were able to present at that reception and to get across to Members a little bit about the impact that it has had. The debate is another important step, and we look forward to hearing more about the Government’s strategy on recognising the effects of fibromyalgia on sufferers and what more they will do to raise awareness.

The petition was also specific about recognising fibromyalgia as a disability under the Equality Act 2010, which is an important and contentious issue. Providers of public services are required to make accommodations for people with disabilities. Many fibromyalgia sufferers would qualify as disabled in their own right, but each sufferer has to prove their own disability. Given that, as we have heard, the condition can take more than a year to diagnose in the first place, it is often quite a bit after that before sufferers are actually recognised as disabled. While many people manage their symptoms and go on to enjoy productive lives, the invisibility of fibromyalgia and the difficulty of diagnosis means that many patients are not recognised as disabled and are often invisible sufferers. As we have heard, that has a knock-on impact on their families, who often attempt to manage caring responsibilities alongside their responsibilities as breadwinners, trying to keep food on the table.

Once diagnosed, fibromyalgia sufferers would like the Government and the Department for Work and Pensions to recognise them as disabled under the Equality Act, ensuring that they get any support that they need to lead productive lives. Of course different patients will have different attributes and needs, but it is a chronic condition that will not get better. Ensuring that they do not have to fight to be taken seriously would be of real value. We heard previously that fibromyalgia may affect as many as 5% of the population, yet less than 0.2% receive PIP due to having it.

I am delighted to set the ball rolling on this important debate and look forward to hearing the perspectives of other hon. Members. Fibromyalgia sufferers need greater certainty, greater research and greater awareness. Collectively, we as a country need to do more to ensure that we not only understand but support them in their illness and in their desire to lead productive lives.

[Several hon. Members rose—]

--- Later in debate ---

[Toby Perkins]

When Members secure a debate, they always worry about whether they will fill the time, so it is great that this has been one of those debates that could have filled twice as much time. It is hard to pick out any particular contributions, but what the hon. Member for Morley and Outwood (Andrea Jenkyns) said was particularly compelling and, as the Minister said, the contributions from my hon. Friend the Member for Ellesmere Port and Neston (Justin Madders) and the hon. Member for Carmarthen East and Dinefwr (Jonathan Edwards) about the impact on families were also powerful. We will take the Minister up on her generous offer. Thank you.

Question put and agreed to.

Resolved,

That this House has considered the recognition of fibromyalgia as a disability.

Oral Answers to Questions

Toby Perkins Excerpts

Monday 19th November 2018 Commons Chamber

[Justin Tomlinson]

As we have pointed out, those transitioning from legacy benefits will get the additional two weeks of housing benefit and, with the new measures announced, two weeks of either their employment and support allowance, their jobseeker’s allowance or their income support, as well as access to advance payments from day one. The key thing is that this system mirrors the world of work. For the vast majority of people, their aim is to get into work, and in work they would expect to be paid in arrears. They would have to deal with that at the same time as going back into work, whereas now the personalised work coach can provide support by giving them access to advance benefits and pointing them to the support offered by Citizens Advice and our wider universal credit support network. It is about providing that support as people prepare themselves for the world of work.

[Toby Perkins (Chesterfield) (Lab)]

12. What proportion of tribunal appeals for (a) personal independence payment and (b) universal credit have been successful in 2018; and what assessment she has made of the implications for her policies of those appeals having been successful.

[The Minister for Disabled People, Health and Work (Sarah Newton)]

In the first six months of 2018, 71% of PIP decisions and 51% of UC decisions heard and decided at appeal were revised. For context, of the 3.5 million PIP decisions made to date, 9% of all decisions have been appealed and 4% have been successfully appealed. We remain utterly committed to ensuring that we get decisions right first time and reduce the number of appeals.

[Toby Perkins]

The Minister may be committed to reducing the number of appeals, but the statistics she has just revealed show how awfully the system is working for many of the most vulnerable in our society. As she says, 71% of appeals are successful. That is putting a huge financial strain on the system but, more importantly, some of the most vulnerable are going through incredibly stressful processes. Will the new Secretary of State work with the Minister to improve the system so that the people who come into our surgeries every single week and tell us how awful the system is can stop going through the process as they are currently having to?

[Sarah Newton]

I am sure that I will have the support of the Secretary of State in continuing our comprehensive plan for improving PIP. However, I hope that the hon. Gentleman will welcome the fact that, according to the most recent data from the Ministry of Justice, there has been a 15% decline in the number of appeals, and the customer satisfaction rating for PIP has risen from 76% to 87%. I have always said that one person’s poor experience is one too many, but we will continue to do everything that we can to get it right first time.

Universal Credit

Toby Perkins Excerpts

Wednesday 17th October 2018 Commons Chamber

[Ms McVey]

My hon. Friend is right that unemployment has fallen by more than half in the north-west. I am surprised that the hon. Member for Wirral West (Margaret Greenwood) did not know that but, then again, the Opposition are not always too hot on their figures.

I want to give another important piece of information. Labour’s position on the Welfare Reform and Work Bill in 2016 was, through the Labour Whip, to abstain on the changes. Some of them broke the Whip, but the position was to abstain, and this is why: in 1997-98, the welfare cost per household was £5,603 but, by 2010-11, when Labour left office, that figure had gone up to £8,350—up by nearly £3,000 per household. That was why everybody agreed in principle that universal credit was the way forward and that we had to get the benefit bill under control.

[Toby Perkins (Chesterfield) (Lab)]

The Secretary of State pointedly remarked at the start of her contribution that this is the third time she has had to come to the House just this week. Does that not tell her how badly these reforms are going? We are all receiving hundreds of representations, and few of her own party’s Members are willing to turn up to support her. Is it true that, at the end of the debate, she will not have the confidence to ask her Members of Parliament to vote against the motion, because she knows that many of them agree with it?

[Ms McVey]

I thank the hon. Gentleman for his kindly words and advice but, when the Division comes, we will see what happens. I am convinced that Government Back Benchers know how many millions more people we have got into work. I am convinced that they know that 1 million more disabled people will end up with more money under universal credit. That is what this is about—supporting the most vulnerable claimants.

[Ms McVey]

I will.

[Toby Perkins]

On a point of order, Mr Speaker. I wonder whether you could provide advice. I understand that it is a matter of record whether the Government intend to vote for something. I have asked the Secretary of State specifically whether the Government will vote against the motion. Is it reasonable to ask that question?

[Mr Speaker]

It is perfectly reasonable for somebody to ask, and the Secretary of State can answer if she wishes or not if she does not, but there is no breach of order in there not being a declaration of intent on that matter at this stage in the debate. At what point it becomes clear that there will or will not be a Division remains to be seen, but nothing disorderly has occurred. We were about to hear an intervention from Vicky Ford.

--- Later in debate ---

[Toby Perkins (Chesterfield) (Lab)]

As we approach the end of this debate, the fact that such a huge number of my colleagues are still attempting to catch your eye, Madam Deputy Speaker, speaks more powerfully than any speech we will hear today about the full scale of the catastrophe that universal credit is visiting upon some of our most vulnerable constituents. The truth is that every single one of us will be getting emails from our constituents and, heartbreakingly, when we meet those constituents in our surgeries we see how appallingly badly these people have been treated and how far away many of them are from the world of work.

One of the things that upsets me most about universal credit is that a programme that was designed to get people into work is also making life a misery for people who are a long way from the world of work—those who are never seriously going to be available for work. The system treats those people most brutally. They are the very people we in this place should be defending, but they have done worst out of this system.

The Secretary of State for Health and Social Care got in trouble this weekend for claiming on television that he had not received a single letter from his constituents on universal credit, which I find hard to believe. He was disproved when one of his constituents wrote to the press. Is any Conservative Member willing to put their hand up and say that not a single constituent has got in touch to say that universal credit has made their life worse?

[Steve Double]

rose—

[Toby Perkins]

I do not have time to take an intervention. Only one Conservative Member claims that not a single constituent has been in touch, so we can take it that every other Conservative Member knows the problems that the Opposition are elucidating. That is the most powerful condemnation of this disgraceful policy.

Personal Independence Payments

Toby Perkins Excerpts

Wednesday 31st January 2018 Westminster Hall

[Toby Perkins (Chesterfield) (Lab)]

Having witnessed the way in which the Tory party did politics in the run-up to the 2010 election and having sat opposite them between 2010 and 2015, this is not an accident. It is a deliberate part of the party’s electoral strategy: to demonise the poor and to say that this country’s problems are caused by the most vulnerable people in our society. The experience that claimants receive is a deliberate part of the Conservatives’ political strategy.

[Marsha De Cordova]

My hon. Friend is spot on. Let us be clear: from the outset in 2010, the Government’s fundamental aim for the new benefit was to make savings and to reduce the case load of disability benefit claimants. That is a fact. The expectation was to make a saving of 20%, which equated to around £1.5 billion. It is untrue to say that that was not the case. PIP was supposed to cover the additional costs of living with a disability, but that has not been the case in practice. The assessment framework is flawed and it causes delays.

Universal Credit

Toby Perkins Excerpts

Thursday 23rd November 2017 Commons Chamber

[Mr Gauke]

I can give that assurance. A pleasing aspect of the response to the announcement made by my right hon. Friend the Chancellor is the warm and broad support for the changes from, for example, the Trussell Trust, Citizens Advice, landlords associations and so on. Engaging closely with all those organisations and partners is key to delivering universal credit successfully.

[Toby Perkins (Chesterfield) (Lab)]

The most significant part of the statement is that we must remember universal credit is aimed at supporting people who are out of work to move into work. That makes perfect sense if universal credit was just replacing JSA, but, of course, many people going on to universal credit are nowhere near work and are very seriously disabled. Those people seem to be entirely missing from the statement and from the steps the Chancellor announced yesterday. Will the Secretary of State at least acknowledge that universal credit is failing the most disabled and tell us what he plans to do to address the concerns raised by the right hon. Member for Chingford and Woodford Green (Mr Duncan Smith) about the most seriously disabled people, who are being failed by universal credit?

[Mr Gauke]

I do not accept the hon. Gentleman’s characterisation of either universal credit or what I actually said. I make it clear that universal credit provides support for those who need it. On the severe disability premium, which he raised yesterday at Prime Minister’s questions, it is worth bearing in mind there is no reduction in the overall amount of support. When universal credit was introduced, it was designed to widen the support that is provided. Universal credit is about providing support to everyone, and getting people closer to work and into work, where possible, is absolutely the right thing to do.