Disability Benefits: Assessments

Charlotte Nichols Excerpts

Monday 4th September 2023 Westminster Hall

[Elliot Colburn]

I am grateful to the hon. Lady; she makes a good point. She has glimpsed a bit further into my speech, but if she is happy to bear with me I will certainly cover that point.

Without adding too much to the list of asks for the Minister, what does he think about giving a greater role to specialists who are more known to the claimant?

I want to move on to talk about the assessment process and the wider system. Often, claimants, faced with something with which they have previously had little or no contact, will talk about a sense of interrogation or mistrust between them and the assessor—I have heard those words from claimants many times. As I say, almost every conversation I have had with a constituent or one of the petition creators has been prefaced with a line about nervousness, stress or other emotions in the lead-up to the assessment, alongside any physical or mental difficulties that a claimant may have. All too often, perhaps unintentionally or unwittingly, they are left feeling like they are a case number rather than a person.

Let me bring up another example, which is also about a PIP claimant with mobility-based problems. They turned up for their assessment and the lift in the assessment centre was broken. Despite their mobility issues and fearing that if they were not able to attend there might be consequences, they attempted to climb the stairs. After a significant amount of time, they managed to arrive for their assessment, but it had caused them a great deal of pain and a lot of stress, and the fact that they were able to get up the stairs was then used against them in the report.

[Charlotte Nichols (Warrington North) (Lab)]

I concur with the point that the hon. Member made about the sense of interrogation that many of our constituents feel when going through a process that can be very degrading. In the case of one of my constituents the assessor dropped a pen, and when my constituent bent down, picked it up and handed it to the assessor, that was used against them in their assessment. Such stories are not uncommon. We need urgent and radical reform to make sure that people are not treated like criminals for trying to seek help with their living costs.

[Elliot Colburn]

I am grateful to the hon. Lady for that intervention. Her point about her constituent is well made and chimes with what we have heard from the creators of the petitions.

To return to my example, the lift was broken and the PIP claimant had no option but to attempt the stairs. That case is echoed elsewhere, as the hon. Member for Warrington North (Charlotte Nichols) has just described. The strongest arguments made by the petition creators, whom I met before today’s debate, were about how the assessments are conducted, the time taken to conduct them, where they are conducted and who they are conducted by. In a report on the PIP assessment process, Mind, the mental health charity, found that people felt the process tries to catch them out. I am sure the Minister will agree that if that is the perception, that needs to change; we need to listen to the claimants to figure out why that is.

We have seen some alternatives offered, which I am sure we will hear more about from colleagues from Scotland. I will not steal anything from their speeches, so I will move on.

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[Charlotte Nichols (Warrington North) (Lab)]

It is a pleasure to serve under your chairship, Mr Mundell. I thank the Petitions Committee for selecting today’s debate and the hon. Member for Carshalton and Wallington (Elliot Colburn) for opening our discussion.

Probably like all MPs present, PIP and legacy disability benefits issues form a huge part of my constituency case load. I pay tribute to my casework team—Paula, Sean, Sarah and Leigh—for their help in supporting my constituents in Warrington North. Given all the cuts to citizens advice bureaux and other support, MPs’ offices increasingly pick up the pieces of a broken welfare and health system, so we can never give our teams enough credit for their diligence in helping us to help our most vulnerable constituents. My team all have an excellent track record when it comes to appeals in this subject area.

As chair of the all-party parliamentary group for multiple sclerosis, I will focus my remarks on the specificities of the experience of those with MS—first, for the sake of brevity, because colleagues have already made some of the general points far better than I would, and secondly, because the experience of those with MS seems to be overlooked in policy terms because it is too common to be considered a rare condition but too rare to be considered alongside more common illnesses. My remarks will nevertheless be relevant to the one in six people living with a neurological condition and to people with conditions that are functionally similar to MS.

As chair of the APPG for MS, before recess I chaired a joint meeting with the APPG for Parkinson’s and the APPG on Crohn’s and colitis, to discuss PIP. We heard how often people with fluctuating conditions are let down by the PIP system. In the UK, more than 130,000 people have multiple sclerosis. Living with MS is hard. Although no two people with MS are the same, there are numerous common symptoms that can significantly impact people’s lives, ranging from those that are more visible, such as problems with walking and moving around, to those that are less visible, such as pain, fatigue and cognitive issues.

Symptoms regularly fluctuate: one day, someone might be active and able to go about their daily business, but the next day it can feel impossible for them to get out of bed. Welfare support is therefore vital for many people with MS to manage their extra living costs, to help with the good days and the bad. The extra costs place a significant financial strain on disabled people, and PIP can help people to stay in work for longer, to participate fully in society and to retain their independence.

Ten years since its introduction, the PIP process still fails to adequately recognise the fluctuating nature of MS and other fluctuating conditions. It does not allow people with MS to properly communicate some of their less visible symptoms, which none the less can prove extremely debilitating. What is more, according to new evidence from the MS Society, which provides the secretariat for the APPG, it leaves people with MS feeling anxious, stressed and embarrassed.

Earlier this summer, the MS Society surveyed more than 3,500 people living with the condition about their experiences with PIP, and it will publish a report next month. The preliminary findings show that almost three in five people—57.5%—said that they were unable to accurately explain their condition and how it affects their daily life; more than 61% disagreed that their assessor considered their hidden symptoms, such as pain, fatigue and cognitive difficulties; and of those who saw their report, 61% said that it did not give an accurate reflection of their MS and half said that it contained factual errors.

The health and disability White Paper takes appropriate steps to fix some of the problems, such as by committing to improving training for assessors, but significant additional changes need to be made to the disability benefits system so that it is fit for purpose in 2023. I will focus my remarks on three key areas: the use of informal, including covert, observations, which colleagues have picked up on; the PIP 20-metre and 50% rules; and repeat assessments as they relate to people experiencing multiple sclerosis.

On informal observations, assessors too often make decisions based on how people look during their assessment. For example, at the meeting to which I referred earlier, Bethen, Neil and Julia, who all live with MS, shared their experiences. Bethen saw in her report that she was awarded nothing because she was “holding a bag” in her assessment. That was despite tripping over during the assessment and displaying obvious evidence of struggling with mobility. Neil’s report came back stating that he

“navigated the test centre well”.

Julia’s report marked her as being able to prepare her own food, on the basis of being able to cut up a banana herself.

PIP guidance states that assessors should

“balance informal observations with evidence from professionals who may have observed the claimant more regularly.”

That clearly is not happening. Guidance is not being correctly applied by assessors, or enforced by the DWP. People who have seen their assessment report say that informal observations are given more weight than the medical evidence. In fact, only 22% of people with MS said that their report referenced evidence gathered from their healthcare professional. Another person with MS told the MS Society that

“no one was reading about the information presented to them by medical experts and effectively accused me of lying.”

Informal observations must be backed up by evidence from the claimant or, if an informal observation is given more weight than evidence to make an assessment about someone’s ability to do a particular activity, the reason for doing so should be fully justified in the assessment report. Additionally, assessors should inform people with MS that they are subject to those informal observations.

PIP guidance should be changed to say that the reliability criteria should be applied, which could be through follow-up questions if someone is observed to be doing something that contradicts the evidence provided. I ask the Minister, in his remarks, to provide assurances on what the Department will to do improve the enforcement of the guidance by his Department.

My second point relates to the PIP 20-metre rule. The rule means that someone who can walk one step more than 20 metres is ineligible for the highest rate of mobility support. How a person functions under clinical testing and in their natural environment can clearly be different. Twenty metres represents a snapshot of someone’s day. That does not take into account the impact that MS symptoms such as fatigue can have for days or weeks after people attend their assessment. Symptoms can also affect people differently from day to day.

Another example of how the PIP system is stacked against people with multiple sclerosis and other fluctuating conditions is the 50% rule, which is a rigid and arbitrary test that requires symptoms to affect someone for more than half of a given period in order to count towards a PIP claim. I join the MS Society and Parkinson’s UK in calling for the Government to scrap the PIP 20-metre rule and to work with experts to come up with an appropriate alternative that considers conditions that fluctuate, or relapse and remit, and that have hidden symptoms. The 50% rule should be more flexible so as to cover and consider the frequency, severity and impact of all symptoms over time.

Finally, the White Paper commits to the introduction of a severe disability group for progressive conditions that have no cure, which I welcome. Over one third of those who described their MS as being at an advanced stage received an award length of two to five years and 5% received an award length of two years. MS is a progressive, lifelong condition for which there is no cure, and it is just wrong that those who have already been deemed eligible for maximum support on PIP have to go through the stress and turmoil of applying for PIP again. I would appreciate the Minister outlining when the DWP intends to set out which conditions will be covered as part of the severe disability group. Will that include multiple sclerosis?

To summarise, I am sure that the Minister agrees that disabled people deserve to be treated with dignity and respect, but surely he can see that the PIP assessment process demonstrates an antiquated and outdated understanding of what disability is, based on a narrow definition of disability. That needs to be brought into the 21st century once and for all. The PIP process and criteria should accurately reflect the impact of living with MS, including mobility, fluctuation and hidden symptoms, with a move away from arbitrary measures towards a more flexible approach.

Members in this room will have heard regularly from constituents who have been treated with contempt by the system, with two thirds of people with MS saying that their experience of the PIP process had a negative impact on their health, and two in five saying that that experience made them feel embarrassed. I hope that it is us who are embarrassed by those statistics. I hope the Minister will listen to the experience of those with MS and bring forward changes such as those that I have set out today. I would welcome the opportunity to meet the Minister and the MS Society to thrash out some of these issues in greater detail.

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[Tom Pursglove]

The right hon. Member will be aware that the Government have set out that there will be transitional cash protection. There was the statistical release that we undertook to make available, which has now been published. We are carefully working through what the reform model means, and how individuals can best be supported to ensure that we unlock the potential to work where that is right and appropriate for people. As I say, it is important that the transitional protection be in place as we move to the new system.

There was a question about timescales for reform. We will seek to legislate for the reform in the next Parliament; we will then roll it out in a safe, stable way, and bring about the change incrementally and gradually, area by area, to ensure that we get this right. These are live discussions as we workshop and work through specific aspects of the reforms.

I am conscious that the Chair of the Work and Pensions Committee raised quite a lot of questions; I will answer as many of them as I can. If there is anything that I miss, I will gladly follow up with the Committee.

[Charlotte Nichols]

The Minister speaks about reforms and live, ongoing discussions. Can he confirm that he is having conversations with Treasury colleagues about not just the eligibility criteria for the reforms and support, but their adequacy? To use MS as an example again, the average cost of having MS is an additional £337 a month. Can the Minister confirm that the issue is not just eligibility, but the adequacy of the support to meet the additional costs faced by disabled people with various conditions?

[Tom Pursglove]

There is ongoing work to review the cost of living payments that the Government have made available in the current climate. I anticipate that the results will come forward over the autumn and inform future decisions that we make. We continue to have conversations with the Treasury about the support that we provide. The Secretary of State for Work and Pensions will take his annual uprating decisions over the coming months as well, so we should be able to provide assurance in due course on where we go from here on the uprating or otherwise of benefits, taking into account the circumstances, as appropriate, in a thorough-going fashion.

The shadow Minister, the hon. Member for Lewisham, Deptford (Vicky Foxcroft), touched on means-testing for the personal independence payment, or changes to eligibility for PIP. I can confirm that there are no plans for that. I want to be very clear about that.

I will finish on a point that I made earlier. The UC health top-up will be passported via eligibility for any element of PIP. That reduces the number of assessments that people need to undergo and streamlines the process for claimants entitled to both benefits. I recognise that the work capability assessment is quite a point of difference between our Front Benchers. I was not a Member of this House when it was introduced, but I well remember debates on the work capability assessment in years gone by; we have moved on considerably since. There has been a lot of positive reform and improvement to the work capability assessment, but we think it is right to scrap it; we do not think it is right that people should have to prove that they are unfit for work to access the support that they seek.