ESA: People with Motor Neurone Disease

Debate between Justin Tomlinson and Stephen Twigg

Wednesday 11th July 2018 Westminster Hall

[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.

Independent Living Fund

Debate between Justin Tomlinson and Stephen Twigg

Wednesday 8th July 2015 Westminster Hall

[Justin Tomlinson]

I am coming to that. I am just setting the background, after which I will talk about the action that is being taken.

The potential implications of closing the ILF were set out in the equality analysis in very clear terms, focusing on the likely impact of the proposed policy on those with a protected characteristic and concentrating on assessing the impact of closure on people with the protected characteristic of disability and, in particular, users of the ILF. The equality analysis considered a worst-case scenario, even if it was not certain that it would happen, separately under each limb of the public sector equality duty.

In addition, we have made a commitment, as part of the equality analysis, to monitor the impact of the closure of the ILF on former users. I believe that that will be welcomed by all. A sample of former ILF users have already agreed to take part, and we have started planning the research, which will be completed before the end of the 2015-16 financial year.

Before the closure of the ILF, the Government worked closely with the ILF in partnership with ILF users, local authorities in England and the devolved Administrations to ensure that they benefited from a programme of extensive transitional support. As part of that support, all former ILF users received a detailed support plan setting out the level of support and the outcomes secured under their ILF award.

The information was shared with local authorities, and the devolved Governments all had access to the data transferred to them prior to closure. In addition, the ILF engaged directly with all authorities involved in the transfer of user care and support in 2015, and it held a series of conferences in October 2014 to provide local authorities with up-to-date information. One-to-one discussions were held with all 151 local authorities at those events. Similar events were held in Wales, and the ILF has worked closely with the Scottish Government to ensure a smooth transfer for all users across Great Britain.

The Department and I have worked closely with the Department of Health, the ILF and interested parties, including a number of significant stakeholder groups, to develop additional guidance for local authorities. We did so in recognition of the fact that, as has been highlighted, not all local authorities immediately displayed full confidence in the arrangements. That included points raised in earlier debates on the subject, which is why we developed additional guidance to ensure that we were prepared for the transfer of former ILF recipients to sole local authority care, underpinned by a new chapter in the Care Act 2014 statutory guidance. That will help to inform local authorities in the transfer of former ILF users to the adult social care system in England.

I have recently written to my counterparts in the Department of Health and the Department for Communities and Local Government, as well as to the Chief Secretary to the Treasury, because I want to ensure that the needs of all former ILF users continue to be taken into account. I have received assurances from the Department of Health and DCLG that future funding for former ILF users will be considered at the next spending review. It may be helpful to highlight the positive remarks of the Chancellor during the election, which are formally on record.

In addition, DCLG has written to each local authority that has former ILF users to draw attention to the agreed code of practice, which will be supported by the new guidance. In the meetings and conversations I have had with the Departments, it has been clear that they absolutely understand that and there is collective support for it. Ongoing support from my officials and me will continue, to ensure that we monitor what is happening and keep a close eye on the situation.

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

I am encouraged by what the Minister has just said. My constituent, Laurence Clark, received support from the ILF. Liverpool City Council has picked up that support, so he knows he has it until the spring of next year. He has asked me to raise his concern about what would happen were that funding not to continue beyond April 2016. He says that it is crucial to his ability to live independently and, in particular, his ability to go to work.

[Justin Tomlinson]

We all have constituents who would echo those words, which is why we are working closely with the Departments.