ESA: People with Motor Neurone Disease

Stephen Twigg Excerpts

Wednesday 11th July 2018 Westminster Hall

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I beg to move,

That this House has considered employment support allowance for people with motor neurone disease.

It is a great pleasure to serve under your chairmanship, Mr Owen. I begin by congratulating the Minister on his return to the Department this week. I look forward to his response to my speech. I also thank the campaigners who have pressed the Government so hard to scrap all employment and support allowance reassessments for people living with motor neurone disease. They have been in Westminster on several occasions over the past six months. I first met them in February, outside the House in Parliament square, after they had braved the beast from the east and were covered head-to-toe in snow.

I particularly thank Sandra Smith, who is in the Gallery. She is a tireless voice for people with MND and has campaigned hard on the important issue of access to benefits. I also pay tribute to the Motor Neurone Disease Association, which does a fantastic job of standing up for, and giving support to, people living with MND, their families and loved ones.

Today I remember my very good friend, Marge Carey. It was Marge who first encouraged me to get involved with the Merseyside branch of the MNDA, and I am proud to be patron of that branch. I am incredibly grateful to the branch’s committee and volunteers, who do so much to support people with MND and their families.

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

I congratulate my hon. Friend on securing the debate. I join him in thanking the campaigners, because the employment and support allowance application and reassessment systems just are not suitable for people with motor neurone disease. Will he join me in congratulating those who campaign locally? Torfaen lost its former mayor, Doug Davies, to MND. His son Giles, also a councillor, has been doing great work with the local MNDA branch. That local campaigning complements national campaigning. Does he agree that it is important?

[Stephen Twigg]

I absolutely concur and echo what my hon. Friend says. Local campaigning efforts—as well as the local support, fundraising and opportunities to meet—are what the MNDA and MND campaigns do so well. That local voice is absolutely crucial.

Motor neurone disease is the umbrella term for several neurodegenerative disorders that selectively affect motor neurones. Motor neurones are the voluntary muscles that control processes such as walking, talking and breathing. Eventually, the muscles become so weak that the patient loses even the most basic of motor functions, such as the ability to walk, eat or breathe unaided.

Unfortunately, little is known about what causes MND. We know that it affects about one in 100,000 people, and we know that, in about 90% of cases, the cause is completely unknown. There is also no known cure. The average life expectancy following diagnosis is between two and four years, although we know that around one in 10 go on to live for 10 years or more. Most patients eventually pass away as a result of respiratory failure.

In 2016, the ice bucket challenge became a viral sensation, with many celebrities, sports stars and even politicians throwing ice-cold water over themselves to raise awareness of MND. It was a global campaign and raised in excess of $100 million for support and research into the causes of, and potential cures for, MND. It was so successful that the additional funding helped scientists at the Massachusetts Institute of Technology in the United States to uncover a new gene that they believe may well be the cause of MND. Although we are still far from a cure, we are—hopefully—getting closer.

[Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)]

The hon. Gentleman is making a powerful and important speech. He mentions that MND is a terminal disease. Scotland has replaced the arbitrary definition of “terminally ill” as being likely to die within six months with the clinical judgment of a medical practitioner that someone has a terminal illness. Does he agree that that is a far more sensible way to proceed, and will give dignity to people with MND?

[Stephen Twigg]

I was not aware of that change in Scotland, which sounds an excellent way of addressing the issues I will come on to. I will also set out suggestions from the MNDA regarding Department for Work and Pensions policy.

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

My hon. Friend is making an excellent speech. I was a physiotherapist working in neurology, so I have a good understanding of motor neurone disease. It is crucial that individuals are able to live their lives to the full in the time that they have, as opposed to facing the barriers put in place by the benefits system. Does he agree that welfare should be support, rather than a battle all the way, as it currently is?

[Stephen Twigg]

My hon. Friend hits the nail on the head. It is about supporting people and their families through what are, by definition, the toughest times of their lives, and about ensuring that there are no unnecessary barriers to their living the most fulfilling life they can.

I will briefly set out the basis of ESA, which will enable me to make my argument about reassessment. ESA is a benefit for adults with long-term disabilities or medical conditions that affect their ability to work. It is conditional, so some claimants have to take part in work-related assessments to claim their benefits; and it has two tiers—the work-related activity group and the support group. The work-related activity group is for those claimants whom the Department considers capable of working again at some point in the future. People in that group typically receive less financial support than those in the support group and are expected to undertake regular work-related activities with an adviser. Roughly half a dozen people with MND are in that tier.

The second tier is the support group, which is for those whom the DWP considers to have a limited capacity to work. It includes people who have almost no prospect of working again in the future because of their disability. These claimants tend to receive a higher level of support and do not need to undertake the same work-related activities to guarantee their benefits. It is estimated that approximately 600 people with MND fall into that tier.

When applying for ESA, claimants must undergo a work capability assessment, which is used to determine which tier claimants are streamed into. Reassessments are common, to ensure that people are correctly tiered. The maximum amount of time between reassessments is two years.

[Scott Mann (North Cornwall) (Con)]

A concern of my constituents is the challenges of the benefits system for people with this illness, and how that snowballs and affects their lives. Most people receive the correct financial support after their assessment. However, there are people with this long-term condition, which will not improve. Does the hon. Gentleman agree that, once somebody with MND has been assessed, they should not be continually reassessed to see whether their condition will improve in the future?

[Stephen Twigg]

I agree entirely. In fact, he anticipates what I am about to say. It is excellent that the debate has cross-party support from Back-Bench Members, so I am grateful for that intervention. Reassessments are my point of grievance with the Government.

Last September, the Department announced that new claimants with the most severe disabilities who apply for ESA will be exempt from reassessment. That is because, as the hon. Gentleman just said, many people with the most severe disabilities have little to no chance of their condition improving. The announcement was, of course, hugely welcome. However, the exemption applies to new claimants, not to those people with long-term conditions who were already in the support group before September 2017.

People with MND—of course, this also applies to other conditions, but today’s focus is on motor neurone disease—who were already in the support group last September are required to undergo a final assessment in order to be exempt. The Government have provided assurances that the final assessment for people with MND will be mostly paper-based, but that is not guaranteed, and the paper-based system is itself not straightforward. It requires filling out a complicated 26-page form. Having to complete such a form is surely an unnecessary further stress for people living with MND. Complications or issues with the paper assessment could mean that claimants are required to attend another face-to-face assessment.

If a claimant has received a confirmed diagnosis of MND or another permanent condition that holds no prospect of recovery and they are already in the support group, there is surely no point in subjecting them to a final assessment. The nature of the claimant’s condition means that another assessment is redundant. It not only causes the claimant further stress and anxiety, but wastes public money on a needless reassessment. People with MND who are in the support group will already have undergone at least one assessment of their ability to work. Given the progressively debilitating nature of MND, their symptoms will almost certainly have got worse since that assessment.

In February, representatives of the Motor Neurone Disease Association met the Minister for Disabled People, Health and Work at the Department to discuss this specific issue. They took with them an open letter, signed by more than 8,000 people, which called on the Government to end mandatory reassessments for claimants with MND. My understanding is that the Minister committed to finding a solution that would exempt people with MND from reassessments, but she said that that would not happen until a review of the Government’s entire exemption policy had taken place. The Minister sent a letter to the MNDA following that meeting. It is welcome that the Minister has discussed a possible solution to this matter with her officials. However, the lack of reference to an imminent solution for those already in the support group is worrying and is causing further anxiety.

[Christine Jardine (Edinburgh West) (LD)]

Does the hon. Gentleman agree that the reassessment issue underlines the fact that, despite the improved understanding and awareness of motor neurone disease as a condition, there seems to be a lack of understanding in the DWP, not just of motor neurone disease, but of declining, terminal conditions generally, and that perhaps a better approach is required across the board?

[Stephen Twigg]

I agree entirely. The hon. Lady is absolutely right to say that what we are discussing affects not only motor neurone disease, but a number of other conditions. I will not take any further interventions, because I want to leave the Minister enough time to respond in this short debate.

The Government have yet to give a timeframe for a review of exemptions to take place. Until that review is complete, people with MND still risk being called for an unnecessary and wasteful reassessment at any point. Even worse, should the claimant be unable to complete the reassessment, their benefits could be taken away from them. That would be cruel and totally unacceptable.

My understanding—we will hear the Minister’s response in a moment—is that the system that the Department uses for ESA claimants is not able to differentiate between different diagnoses, so it is not possible for the Department to filter all the people in the support group who have MND or similar conditions in order to grant them an exemption from further assessment. Can the Minister shed some light on why the system has been set up in that way, and what changes the Department could make to prevent such issues from occurring again? I do not think that it would be unreasonable for the Department to apply an automatic exemption to all those claimants currently in the support group who have a certified MND diagnosis; and that should not require an additional face-to-face assessment, as there is no prospect of people with MND getting better.

Last month, the Department changed the personal independence payment system so that those with severe degenerative diseases will no longer have to undergo regular tests to prove that they remain eligible for PIP. That exemption includes people with MND as well as other conditions, such as Parkinson’s and multiple sclerosis. In practice, that means that people whose condition is lifelong and degenerative can be awarded the highest PIP amount, with only a light-touch reassessment once a decade.

I would like the Government to adopt a similar mechanism whereby people with MND can avoid an unnecessary further assessment for their ESA. The Motor Neurone Disease Association has suggested a system in which claimants with MND can send a doctor’s note to the Department to prove their condition. The Department could then use that information to move the claimant to a long-term award within the support group, which would protect them from the need for any further reassessment. The Government have cited legal and operational issues that apparently prevent that seemingly straightforward and humane system from becoming the norm. The DWP has accepted that the work capability assessment is a demanding experience, especially for those with long-term or degenerative conditions, yet it still argues that it is the best method of assessing the suitability to work of those with life-limiting conditions.

As I said, the Government have already changed their policy on new employment and support allowance claimants and their policy with regard to personal independence payment. Today’s debate provides an opportunity for the Minister, who is back in the Department, to say that it will make a similar change for this crucial group of existing ESA recipients. People living with motor neurone disease face many challenges in their lives. Removing the threat of an ESA reassessment would make a real difference to the lives of hundreds of people and their families. I urge the Minister to look again at this issue, and to do so as a matter of urgency.

[Albert Owen (in the Chair)]

In calling the Minister to respond to the debate, I welcome him to his place.

[The Parliamentary Under-Secretary of State for Work and Pensions (Justin Tomlinson)]

Thank you, Mr Owen. It is a pleasure to serve under your chairmanship, although this has perhaps not quite been the week I was expecting.

I pay tribute to the hon. Member for Liverpool, West Derby (Stephen Twigg), who has been a tireless campaigner on this issue both in his constituency, where he has the honour of being the patron of the local branch of the MND Association, and in his work through the APPG. Over the years, he has been a really strong advocate in an area in which there is a lot of cross-party support for improvement. As a Government, we are very much listening, but I will come on to those points.

I also welcome the members of the audience, whom I briefly met outside the Chamber and who have been supporting this work and showcasing the real difference that is needed right across the system. In particular, I pay tribute to Sandra Smith, who has supported the work of the hon. Gentleman. My hon. Friend the Minister for Disabled People, Health and Work is currently undergoing a grilling by the Select Committee on Work and Pensions. I was meant to be part of that Select Committee and asking questions, so we have done a bit of a swap-over. I spoke to her at length last night, and she is incredibly passionate about this work. She is meeting the APPG next Thursday, with representatives of the national association. I hope that the hon. Gentleman will be able to join that meeting.

Nationally, the MNDA is one of the most proactive and constructive organisations for engaging with MPs of all backgrounds and across the parties and working with the Government. At the heart of many of the improvements delivered since 2010 has been the MNDA, using the real-life experiences of its members to make a real difference. There are 90 volunteer branches across the country and 3,000 volunteers. We can all lobby today, and I would like to lobby the MNDA to recognise how fantastic Heather Smith of the Swindon and Wiltshire branch is. She regularly comes to different events in my office, and I think that she should be part of the association’s head office. There we go—even a Minister can lobby.

I want to acknowledge the seriousness of motor neurone disease. While it is thankfully uncommon, it is disabling and distressing. The outlook for those diagnosed is poor, with life-expectancy significantly reduced for the vast majority. Those who are diagnosed with the condition will inevitably need significant medical support as their health deteriorates, with mobility, breathing and eating becoming progressively more difficult.

Crucially—I have seen this in the meetings I have had—we cannot underestimate the emotional and physical impact that motor neurone disease has on the families and friends of those who live with this condition, and who provide care and support 24/7 to their loved ones. They deserve our thanks and appreciation. I know, having met those carers, just how hard that is. That is one of the reasons that there is universal support for this across the House. We all know that this is something we have to take very seriously.

Since 2010, we have been listening and working constructively together across parties. We have made a number of improvements. In October 2016, it was announced that we would stop requiring people with the most severe life-long conditions to be repeatedly assessed for ESA and UC. We all welcomed that; it was a common-sense announcement. We have been working with external stakeholders and healthcare professionals to devise a new set of criteria, to switch off the reassessments for people with the most severe health conditions or disabilities. Those criteria were introduced on 29 September 2017. The MNDA was and will continue to be part of that process. The hon. Gentleman welcomed that in his speech.

That means that for those placed in the ESA support group and the UC equivalent who have the most severe and life-long health conditions or disabilities, whose level of function will always mean that they will have limited capability for work and work-related activity, and who are unlikely to ever be able to move into work, there will no longer be a routine reassessment. That is absolutely key.

We fully appreciate that some people find the work capability assessment a disruptive experience, so we have designed new guidance for healthcare professionals to ensure that the process of initially claiming or going through a reassessment is as unobtrusive as it can be. We ask claimants to complete an ESA50 or UC50 health questionnaire and provide supporting evidence. Where appropriate, we ask their GP or specialist healthcare professional for further supporting evidence. That means that in the vast majority of cases, where the severe conditions criteria would apply, we expect to be able to make a decision on the written evidence alone, without the need to undertake a face-to-face assessment, thereby reducing pressure on the individual.

We will help gather that evidence. We understand that people will be negotiating challenges at home. We will make contact with GPs and health professionals to help gather that. There has been additional training and the guidance has been rewritten. As I said, the MNDA has been involved in shaping this. The Minister is meeting it again next Thursday in order to continue to look, learn and listen.

One specific question was why not make things condition-specific. I understand that question and I have raised it myself, but not everybody fits neatly into a box with one condition only. The way health deteriorates can be different from one person to the next. Many people can have multiple conditions. That makes it very complicated. We learnt from legacy benefits that, while initially attractive—I absolutely get it—a one-size-fits-all approach too often means that people cannot access the highest rate when they are initially assessed, because it could be early in that journey of deterioration. The reassessments are often triggered automatically, to ensure they are upgraded to the highest level. We want the people who need the support to get the support. They should not be denied that. On the old legacy benefits, people were left on the lower parts, because they had too many challenges in their own lives to put it in their calendar and say, “I must go and do that.” When we get to that point, we have to make it as light touch and common sense as possible. That is why, if we can get the evidence from the GP and healthcare professional, it can be light touch, to ensure that they access the highest rate of benefit to support them as quickly as possible.

[Stephen Twigg]

I am listening carefully to the Minister. On condition-specific assessment, surely that is what the Government have done—I welcomed it—for those who are newly assessed for ESA. If it can be done for those who are newly assessed, why can it not be done for those who need a reassessment?

[Justin Tomlinson]

For those in the system, we already have all the evidence we need. We can, therefore, conduct the light-touch assessment internally. For those people on the legacy, however, that would not necessarily have been the case. That is why we would then need to get the final piece of the jigsaw, in terms of the GP and healthcare professional. The expectation is that this should be done through the written evidence provided. As I said, we will help gather that evidence, but we must ensure that everybody—whether they have MND or any other condition—who should be getting the maximum amount of support can do so as quickly as possible.

[Stephen Twigg]

The Minister said “expectation”. I encourage the Department to go beyond expectation and make that the policy, as the Motor Neurone Disease Association is saying: if there is a letter from the doctor, that is enough and there is no need for further reassessment.

[Justin Tomlinson]

That is the absolute expectation. In next week’s meeting we will look at how this is working in practice, whether there are things we need to listen to and go further on, particularly in the training, with the health professionals and assessors in there, but as we have demonstrated since 2010, there have been significant changes. Since 2010, over 100 recommendations have been made, following the independent reviews published by Professor Malcolm Harrington and Dr Paul Litchfield. That is making the assessment process more robust, reliable and sympathetic—actually understanding the multiple challenges people face. One of the most important improvements has been the speed increase, to ensure that we can get people on to the maximum support at the earliest opportunity, rather than leaving people under the old legacy system, not on the highest level of support, which they should be entitled to, recognising that people have enough challenges at home, so we need a more responsive system.

It is important to reiterate that the current assessment process provides a fast-track service for new claims for anyone with a terminal illness who has less than six months to live. Anyone with motor neurone disease who meets that criterion would be guaranteed entitlement to benefit, with claims dealt with sensitively, without a face-to-face assessment and under a fast-track process.