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Work and Pensions Committee

Oral evidence: Health assessments for benefits, HC 604

Wednesday 12 January 2022

Ordered by the House of Commons to be published on 12 January 2022.

Watch the meeting

Members present: Stephen Timms, (Chair); Debbie Abrahams; Shaun Bailey; Siobhan Baillie; Neil Coyle; Steve McCabe; Nigel Mills; Selaine Saxby; Dr Ben Spencer; Chris Stephens; Sir Desmond Swayne.

Questions 53 - 118

Witnesses

I: Louise Rubin, Head of Policy, and Campaigns, Scope; Evan John, Policy, and Public Affairs Advisor, Sense; Sophie Corlett, Director of External Relations, Mind; Charles Smith, Senior Policy Researcher, Citizens Advice; and Hannah Nicholls-Harrison, Policy Officer, Mencap.

II: Joanne Gordon, Chair, Asbestos Victims Support Groups Forum UK; Morgan Vine, Head of Policy and Influencing, Independent Age; Helen Wild, Welfare Benefits Advisor, Downs Syndrome Association; and Marc Francis, Director of Policy and Campaigns, Zacchaeus 2000 Trust.

Written evidence from witnesses:

Louise Rubin, Head of Policy and Campaigns, Scope (HAB0083)

Evan John, Policy and Public Affairs Advisor, Sense (HAB0069)

Sophie Corlett, Director of External Relations, Mind (HAB0040)

Joanne Gordon, Chair, Asbestos Victims Support Groups’ Forum (HAB0013)

Helen Wild, Welfare Benefits Advisor, Down’s Syndrome Association (HAB0039)

Marc Francis, Director of Policy and Campaigns, Zacchaeus 2000 Trust (HAB0054)

 


Examination of witnesses

Witnesses: Louise Rubin, Evan John, Sophie Corlett, Charles Smith and Hannah Nicholls-Harrison.

Q53            Chair: Welcome, everybody, to this meeting of the Work and Pensions Select Committee on health assessments for benefits. A warm welcome to all the witnesses, who are joining us virtually this morning on our first panel. I am going to begin by asking each of them very briefly to tell us who they are, starting with Louise Rubin.

Louise Rubin: Good morning, I am Head of Policy and Campaigns at Scope, the disability charity.

Evan John: I am Policy and Public Affairs Advisor at Sense.

Sophie Corlett: Hello, I am Director of External Relations at Mind.

Charles Smith: Hello, I am a senior policy researcher in the Families Welfare and Work Team at Citizens Advice.

Hannah Nicholls-Harrison: Hi, I am a policy officer at Mencap and a policy coacher at the Disability Benefits Consortium.

Q54            Chair: Thank you all very much for being with us. Can I start with the first question? As I am sure you know, our predecessor Committee looked at health assessments for benefits some four years ago and the Department at the time accepted a number of the recommendations that the Committee made. Have you seen improvements in health assessments for benefits over the last four years and, in particular, do you think that mandatory reconsideration works better now than it did before? I welcome the comments from each of you on those points. I will ask in the same order, starting with Louise.

Louise Rubin: One of the most significant improvements that we have seen since the last report is the introduction of telephone and video assessments that, as you know, have been rather rapidly set up, thanks to the pandemic. We know that in-person face-to-face assessments can create a huge amount of stress and anxiety for some disabled people and there are additional barriers such as travel and transport. This quite simple change has enabled more claimants to communicate in a way that feels more comfortable for them. We do not yet know whether people will be able to choose virtual assessments or telephone assessments going forward. We firmly believe that they should be able to. They should have choice over the assessment that feels most comfortable for them.

Some of the other more positive changes that we have seen are the reduction in the frequency of PIP reassessments and more availability or audio recording. It has to be said that many of the issues that were raised in the 2018 report still exist and quite a lot of those issues were raised well before 2018 in various formal reviews as well. For example, we still frequently hear from people who feel that the medical evidence, the supporting evidence that they have provided, has been largely ignored. They feel that the assessment report has inaccuracies and misrepresentations in it. One person told us, “I really dont understand how assessors can override medical evidence that is provided, because that is evidence and I am not sure how else we can evidence our disabilities”.

For us, the changes that have been made are welcomed but they certainly do not go far enough. I think that the staggering rate of successful appeals demonstrates that.

Chair: Mandatory reconsideration?

Louise Rubin: We have seen some improvement. The data are that in 2019 about 23% of PIP awards were changed at the MR stage. That has increased to about 52% in 2021. Clearly that is a positive outcome for some disabled people who are getting the correct entitlement sooner and not having to go to appeal, but we would much prefer that disabled people get the right decision the first time around and we are a long way from that. On average, we are still seeing 12,000 PIP overturned each month. That is a huge number; a shocking number. Therefore, while the change to MR has slightly improved things, again there is a very long way to go.

Evan John: At Sense we would say that, while there have perhaps been some improvements in some areas for people with complex disabilities, they are small compared to the number of issues that people with complex disabilities face. Thinking particularly of audio recording in assessments, the Committee recommended that they would be the default. We hear that, although they are becoming more common, they are not being implemented as the default. We have heard stories from our employment service that people have to pre-book those calls, pre-book the recording, so it is not the default there.

As Louise said, at Sense we still find that disabled people tell us that their reports are inaccurate and that the application process is still inaccessible, and so the changes that we have seen have not changed the process as a whole.

Specifically on mandatory reconsideration, while there have been some small changes, such as the DWP proactively gathering evidence during that stage, as Louise said, the fact is that 76% of PIP and ESA cases taken to tribunal are overturned, and of course every one of those has been through mandatory reconsideration. If that is the case, you would question whether mandatory reconsideration is the robust method of overturning unfair decisions that it should be.

Sophie Corlett: We would agree with all of what has been said before. On the point of different assessment methods, that has been an improvement for some people to be able to do an assessment virtually but for other people that is not a good solution. One of the things that we would strongly recommend is that those options remain available but that they are optional so that people can choose.

For some people having a face-to-face, real-life assessment is very difficult, the journey is very difficult. For other people, having a telephone or a video assessment is the thing that will ramp up their anxiety. Therefore, it is very important that people are given a choice of the assessment that they have because we want people to be able, first, to attend their assessment and, secondly, to feel very comfortable about sharing their information. What we hear back from people is that they find it difficult to attend and when they are there their anxiety makes it difficult for them to engage well. That would be one thing.

There are issues around the transparency of what information is needed and how that information is used. Overall, we would say that what seems not to have changed is the fundamentals of the system and the assessments appearing to be a gatekeeper, and judgments being made on informal observations of the assessor rather than the evidence and the testimony that people bring. That would be more appropriate for a system that is looking to support disabled people to have a decent financial income or to find a job. That seems to be the fundamental, underlying thing that has not changed.

Charles Smith: I broadly agree with everything that has been said so far by the other witnesses. In particular, we have not seen much progress on the quality of assessor reports and not much progress on them being shared routinely. Also, we have not seen much progress on making it easier to source medical evidence and know how it is being used.

In particular on MR, we spoke to advisers about this because we had seen from the statistics that more awards are being changed at MR. They were not noticeably more positive about the MR process, and there are two reasons behind that. First, a lot of what is being done at MR are things that could have been done beforehand, such as correcting mistakes that were in the assessment reports. That could be done before the decision is made or before the report is written.

Secondly, we are still seeing incredibly long waiting times for MR. The latest stats say around 78 days for a mandatory reconsideration decision. That has gone up and down massively during the pandemic but that is almost as long as the initial application process. That still indicates that MR is acting as a bit of a hurdle to pass rather than a quick decision that avoids people having to go to tribunal.

Hannah Nicholls-Harrison: Some of the areas where we have seen improvements include more accessible communication. There have been online applications and there has also been a push for more easy-reads. This has been important for Mencap because jargon-filled, inaccessible information heightens anxiety in people with a learning disability and creates that persistent fear of being sanctioned without warning. We are pleased to have been involved in the development of some of those easy-reads.

That being said, I would like to echo what the other witnesses have touched on about needing claimants to be able to decide what is the best form for their assessment and, also, how they should submit their assessment. Those should be options that are available to them. It should not be imposed upon the claimant.

Also, echoing what others have said, we would have liked to see more done specifically around making assessments available by default so that claimants did not have to pursue bad information. We also think that audio recordings should be done. We were pleased to see that the Governments response to the Work and Pensions Select Committee in 2018 recognised that they did not go far enough with audio recording, but we would like a firm timetable on when that will be implemented.

In terms of mandatory reconsideration, I echo what others have said. We are pleased to see that there is more emphasis on gathering oral and written evidence, but obviously that 76% being overturned at appeal is indicative that the mandatory reconsideration process is not working for everyone and that you need to get it right from the first instance.

Chair: Thank you all very much indeed.

Q55            Nigel Mills: Louise, can I turn to you? In your submission you suggested that assessors should be experts in the conditions of the potential claimant. Could you talk us through how you think that that could work, especially in a situation where you have an individual with perhaps a physical condition or two and some mental health conditions. How easy would it be to find assessors who could be specialists in all the areas that they might need to be?

Louise Rubin: Yes. Scope identified this as one of the key drivers behind disabled people not getting the right assessment outcome the first time. We surveyed our supporters last summer. We asked them about the changes that they would like to see ahead of the Green Paper coming out and we put forward a number of different proposals for improving the assessment process. We had about 1,700 responses.

The issue that mostly came up was that our supporters felt that their assessor did not understand their condition or disability. Two-thirds of respondents told us that that was the case. The solution that they most favoured was having assessors with what we call appropriate knowledge. For example, one person told us, “The assessor was a nurse with knowledge of physical injuries but they had no understanding of my autism at all. I scored zero in all sections but was then awarded the enhanced rate on appeal”. That is a bit of background on where it has come from.

Since doing that survey last summer we have launched a petition on our ask for a right to request an appropriate assessor. We are at about 30,000 signatures now. We have been asking those who signed the petition the same question, “Do you think your assessor understood your condition?” About 70% of people who answer tell us, “No, they did not understand my condition”. We know that there will be some operational challenges to work through. However, we firmly believe that this is what disabled people want and that it will have a significant impact on their experience of assessments.

In terms of how it could work, we are envisaging that people would select an appropriate assessor at application stage. There would be broad categories of specialisms to select from—mental health, neurological conditions, learning difficulties and so on—reflecting the categories that DWP already uses to manage its claimant data. We are asking people to select because we believe that disabled people have the most expertise in what feels right for them.

The idea is that it is a right to request, similar to flexible working. In the case of flexible working, it does not mean that your employer automatically says yes, but what it does do is kick off a process. The process is governed by a clear code of practice and everybody knows what to expect, what timelines to work in and so on.

As to your question about people with multiple health conditions, we think that it is down to the individual person/claimant to identify the specialism that feels most important. They will be able to identify which of their conditions has the most impact on their daily life or on their ability to work or which condition is least understood by health professionals. That falls to them to make that decision.

Then your question on how feasible this is. At the moment, assessors are already drawn from healthcare professionals. We have found it quite difficult to get straight answers on the specialisms that currently exist, the breakdown. That information does not appear to be readily available, but it is our hope that it would not be too much of a stretch to triage from the exiting pool. Where there are gaps, we would envisage a targeted recruitment campaign to fill those gaps. We recognise that that means the proposal could not be brought in overnight, but that is fine, so be it, because we think that in the end this is going to have a significant impact on the number of people who get the right assessment the first time around and do not need to go to appeals.

Q56            Nigel Mills: I can see that you have clearly thought through how this could work. Could you explain to me what you mean by “specialist” here? Do you want an assessor who has had some internal training by the provider in people with autism, or whatever other conditions we are talking about, or do you think that it needs to be somebody who has a qualification in those areas or has previous experience in dealing with people with those conditions? Would some internal training be sufficient or do you think that it has to be more than that?

Louise Rubin: Yes, I think internal training is not going to cut it in this instance. We are looking more at the background of the professionals. We know that, at the moment, for the most part assessors come from the world of physiotherapy or nursing or occupational health. We are looking to increase the number of specialisms within that. We are not looking for each individual to have a direct specialism but we are talking about broad categories. I mentioned people with a background in learning difficulties, people with a background in mental health, so that we do not find ourselves in the position where we are now where someone with autism is being assessed by someone with a physiotherapy background who does not necessarily have that deep understanding of the impact of that persons condition on their life.

Q57            Nigel Mills: Thank you. Does anyone else on the panel have anything to supplement? Sophie, I can see you waving.

Sophie Corlett: Yes, we would agree with that proposal. People with mental health problems do tend to have very negative experience of assessments. In theory, assessors do receive mental health training at the moment but that is not sufficient to challenge peoples common misconceptions about mental health problems. Being able to request somebody who had a specialist background would be helpful.

For example, we hear from people who go to a PIP assessment who have both mental health problems and another condition and they are not asked anything about their mental health problems because the assumption is that for PIP only the physical condition is relevant. Some background in mental health so that somebody could request that specialist background because they recognise that the mental health problem is going to be the thing that might be misunderstood would be really helpful.

Q58            Nigel Mills: Does anybody have anything different? Evan, I saw you first, and then Hannah.

Evan John: Yes. Sense would also support this proposal. We know of some people with complex disabilities and, of course, those are the disabilities that are less likely to be understood by assessors because they are not as well known and the needs can be more complex. What we hear from the people that we support through our employment services, for example, is that having an assessor who understands their condition makes a real difference.

I can think of one person who I spoke to who said that he had two assessments, one where the assessor did not understand his condition at all beforehand and another where the assessor had done some background research. He said that that made a huge difference to his experience of the assessment. We recognise that it would be impossible for somebody to be an expert in every single condition, but in that case assessors should have access to perhaps a briefing put together by a specialist or a conversation with a specialist to make sure that they understand the challenges that the person having the assessment might face.

It is worth saying that, although medical knowledge is useful, these are functional assessments. It is not the case that they will be making a decision solely based on the medical evidence but it would be the case that this informs their approach and the questions that they will ask, and ultimately their decision will be based on the impact that that particular individual feels as a result of their condition or impairment.

Hannah Nicholls-Harrison: One of the most common concerns that we hear is the failure of assessors to understand their disability or health condition. It seems to be a perennial issue. I spoke with someone recently who was asked by an assessor in the last year what medication they take for their learning disability, and other inappropriate questions.

Having an assessor who understands their condition, their symptoms and the effect that their condition has on their life would not only lead to an overall improvement in the quality of the assessment, it would improve the number of people getting the correct decision the first time. It would also help individuals who find the process stressful and anxiety-inducing or even traumatic to have a more positive experience. We would be very supportive of Scopes proposal.

Q59            Nigel Mills: Charles, do you want to add anything or has it all been covered?

Charles Smith: I think it has all been covered and I broadly agree with everything that has been said.

Q60            Sir Desmond Swayne: Evan, Sense welcomed the proposal in the Green Paper for what was called a severe disability group, but you have a caveat about the requirement for medical evidence to show that the applicant would be permanently unable to work. Can you explain that position?

Evan John: Sure. We at Sense support people with complex disabilities and a lot of those would fall into the category of severe disability as defined by the EWP. We think that this could help reduce assessments for that group of people. One of our concerns with this approach was that it was based on the medical model, in that there was the assumption that it is somebodys disability or impairment that causes their inability to work. However, society does play a role in that. When you ask a medical professional to make a judgment as to whether somebody will ever be able to work, we would question whether that is a judgment that a medical professional who sees somebodys condition for a short appointment on an infrequent basis would be able to make.

For a start, the idea that somebody would never be able to work is too restrictive, but we also think that there are plenty of people whose conditions do not change, whose conditions will only deteriorate or stay the same, who still go through repeated assessments and could have their application decided without going through those assessments. Those people are still in work, so I do not think that eligibility for that group should be limited to people who are out of work, because that would mean that lots of people who we support would miss out.

Q61            Sir Desmond Swayne: Can I open it up on that point as to whether there are other conditions where we ought to be fast-tracking the applicants in a similar process? Fire away.

Sophie Corlett: The issue for us would be less a new categorisation and much more about making sure that on all applications it is possible to identify those people who are particularly unwell, or who are particularly far from work, so that the processing of their application can be speeded up and the evidence can be looked at more completely—it might be a paper assessmentand they might be given a longer-term award.

What we find is that for people who are far from work, who are very unwell and for whom there is a lot of evidence already provided at the initial stage, they are still required to go through an assessment, and they might get a short-term award that would then prompt further assessments. Being able to get more transparency about what is needed, maybe, in order to get a paper assessment and a longer award would be helpful for people with mental health problems who are particularly unwell.

Q62            Sir Desmond Swayne: Charles, is there a role for an independent advocacy service? Is the current provision by DWP sufficient and how could it be provided?

Charles Smith: There is a lot of support and advocacy for people applying for disability benefits. We help around 200,000 a year apply for disability benefits. The important thing to note about that kind of advice is that it is one of the most involved and intense forms of advice that we give.

I was speaking to the chief officer of the local Citizens Advice the other day and was told that the automatic assumption for someone applying for a PIP is that they will start with a double appointment and double the time that is normally given for any other form of advice. That can go for the entire process.

If you speak to other chief officers, they are not able to do that fully because our disability benefit application advice is almost always, with a few exceptions, funded entirely from local authority grants. There is not separate funding, like MaPS on debt advice or help to claim on initial claims on UC. Every organisation here also helps people apply and, although we are able to help many hundreds of thousands of people a year, we are not necessarily always able to give the depth of advice that we need to give, and not always able to do it early enough.

A lot of the advice that we end up giving is helping people to challenge claims. A lot of the time that is because we think that there were fundamental problems with the system and the initial assessment was not done well, but some of that could be avoided by support earlier in the process. Because it is about local authority funding, and that funding is general funding so it is always in competition with all of our other advice areas, what is able to offered across the country varies heavily according to what local Citizens Advice is able to offer. There is definitely some scope for better support across the entire voluntary sector and not just Citizens Advice but for people applying and more consistent service.

Q63            Sir Desmond Swayne: Does anyone want to add anything on the question of independent advocacy? Evan.

Evan John: We would support any additional support that is available to claimants. We should also take a step back and ask why so many people need this extra support. At Sense, what we hear from people with complex disabilities who we support is that they need extra support because the systems are not accessible in the first place. They cannot fill in the forms so they have to get their family or staff from other services to fill in those forms.

The welfare system and, in particular, something like personal independence payments is meant to encourage independence. Yet the current application assessment process is not accessible. It does not enable people to independently manage their own forms. That is the thing that needs to change. It is great to have independent advocacy but we need to make sure that people can do it for themselves. Therefore, yes, we support it but we do not think that this can be a substitute for making the complex system simpler and for making it more accessible to the very people that it is designed to support.

Q64            Chris Stephens: Good morning, panel. I should declare that one of my staff members is part time with me and part time with Citizens Advice, and my election agent is a current volunteer with Citizens Advice in Glasgow.

Charles, I will start with you. Thank you to your organisation for all the work it is doing in Glasgow South West. Do the assessment processes correctly weight all the different evidence that an assessment might have to take into account? I am thinking about the face-to-face assessment, third party evidence, forms and informal observations. If it does not take that into account, what needs to change?

Charles Smith: Thanks for that and to our colleagues in south-west Scotland, which is a separate organisation, but we are very pleased to hear that.

An important thing to note about whether evidence is correctly weighted is that it can be quite hard to tell. Decisions are not explained automatically and how evidence is used is not explained automatically and, as we said previously, the assessment reports are not automatically shared.

What we know from advisers, who have experience of challenging cases at tribunal or are recommended for mandatory reconsideration, is that there is still what we think of as an over-reliance on the health assessment report and with the report of the assessment in the room.

That is a problem for three reasons. First, we often see that are very poor quality. They have a tendency to have copy and paste the insertions from other reports and often very, very basic factual errors. Secondly, this means that medical evidence is ignored, and often other third-party applicants who can give a better vision of how peoples conditions affect them day to day rather than just in the room or on the call at the time are not taken into account. Often one of the key ways that cases are overturned at tribunal is that the medical evidence is gone in to.

Also relying on assessment reports often involves relying on informal observations. Observations are not just answers to questions but also observations of how people were in the assessment. Fundamentally, we feel that those do not give a good vision of peoples capability and do not show whether actions can be undertaken repeatedly, safely and reliably day to day. They only show a small snapshot of what is possible. We find in general that that is not an accurate enough way of weighing the evidence.

Q65            Chris Stephens: Thanks very much, Charles. Louise, you may have come across the evidence from Dr Paul Litchfield last month, who was the independent reviewer of Work Capability Assessments. He told us that strict protocols can require healthcare professionals to fail people on initial assessments, even though their professional judgment told them that the applicant was not ever going to get into work or hold down a job. He described this as, “A degree of pseudoscience and an over-reliance on the numbers”. Do you agree that that is the case and are there people that your organisation has supported who would help us form a view that that is what is going on?

Louise Rubin: Yes, there are a couple of different things in there. First, as Charles said, the issue of how evidence is weighted and used is opaque. We have tried unsuccessfully to find out how it is weighted. It is difficult to get that information from DWP or from the providers themselves. What we do know is that lots of disabled people tell us that it feels to them that the evidence that they have taken the time to collect has largely been ignored or dismissed. That does suggest that this comes down to the assessment itself.

On the other point, I think what you are getting at, and what Dr Litchfield was getting at, is that the descriptors themselves are still very medical in nature. They do not reflect the social model, the real-world barriers that people face. We absolutely agree with that hypothesis. I watched his evidence and I think he is spot on.

The system has not changed appropriately since it was first developed 40-odd years ago. It is still very much rooted in, “What cannot you do?” You score points for saying that you cannot do things but there is no room in that conversation—in fact, it is not a conversation, it is ticking boxes—to talk about the fact that, “I might be able to do something if societal attitudes were different or if the transport network was more accessible”, and so on.

Yes, we do agree with his view that the EWT, in particular, but also PIP is not the social model in action and is not allowing people to express the real barriers that they face or the real impacts of their condition on them.

Q66            Chris Stephens: Thanks very much for that, Louise. Hannah, in its written evidence, the Public Law Project referred to cases where records of assessments had been revised without good reason or explanation. Is this something that your organisation is aware of? If it is, what action needs to be taken and by whom to resolve this problem?

Hannah Nicholls-Harrison: That is not something that we record seeing first hand. However, we are very concerned about the fact of, if we do not have the assessment, how would we know if it has been changed. As we mentioned earlier, it is important that the Work and Pensions Select Committee has requested that you have access to audio recordings and that those become compulsory. We have not seen that change and we would like to see that.

So that people are aware of how they are being assessed, we would also like to see a copy of the assessors report by default. This is critical to helping claimants understand the reasoning behind the Departments decision and would help improve trust in the system.

We also think that it would increase scrutiny and accountability and raise the standards of the reports themselves, if the assessors knew that every person who they assessed would see the report. It might encourage them to take greater care and improve accuracy to ensure that their report is consistent with the claimant who they are seeing. While we have not seen that personally, there are very clear steps that could prevent this happening.

Q67            Chris Stephens: Thanks, Hannah. To be clearand I was on the predecessor Committeeyou would want the Committee to chase up the audio recording and to ensure that that happens in every assessment. Would that be fair?

Hannah Nicholls-Harrison: And to ensure that all claimants are provided with the copy of the assessors report by default.

Q68            Chris Stephens: Absolutely. Thanks for that, Hannah. Evan, thinking back to Dr Litchfields pseudoscience remark, are there any circumstances at all where it would be appropriate for the medical judgment of a healthcare professional to be overturned by someone who is not medically qualified?

Evan John: As I said before, PIP is a functional assessment. We do not think that decisions should be based solely on medical advice, but clearly it would be concerning if that was happening. I am not aware of any instances of it happening in our services but that is something that I can check with in our services and get back to the Committee about.

Q69            Chris Stephens: Thanks, Evan. That is helpful. A final question for Sophie. Thinking back to what Hannah has said, should claimants be able to see their initial and final assessment reports to let them spot any changes?

Sophie Corlett: That would be very helpful. We routinely hear from claimants that the reportswhen they do see themdo not represent the conversation that they had and, also, that the medical evidence that was sent in is not visible there and that informal observations of the assessor seem to have too high a profile or too much weighting in the report. Being able to see the report and that additional level of transparency would be very helpful.

We want to see an independent regulator for the benefit system. It is unique among public services for that scale of service to be entirely without an independent regulator. That regulator could also do spot checks on the audio recording and compare that with the assessment reportif there was an audio recordingand with the evidence that had been provided, to see that a correct weighting had been made and that informal observations or the assessors decision to discount certain bits of evidence or certain bits of testimony or not to talk to some of the people who claimants bring forward, such as support workers, that that decision-making process could be looked at.

It would be very healthy for assessors to know that that was potentially going to be happening. To have an independent regulator would also make sure that there was much more consistency and transparency across the system.

Chris Stephens: Thanks very much for that, Sophie.

Q70            Shaun Bailey: Charles, specifically to you first: one of the things we saw, particularly during the pandemic, was the change in the approach the Department took on the delivery of assessments and particularly the flexibility it showed in respect of medical evidence. I want to understand a bit more what the impact of that was on the people who you support through Citizens Advice and your view on whether that flexibility should be embedded more permanently within the system. If anyone else on the panel has particular insights on that as well, it would be good to hear those.

Charles Smith: We welcomed the statements from the Department and specifically from the Minister about taking a more sympathetic view to claimants experience and being more flexible on medical evidence. Talking to advisers about their experience during the pandemic, they did not highlight more flexibility with medical evidence as a particular step forward, and was not something that they particularly noted.

That might not be because DWP had not been more flexible but because there were a lot of other difficulties arising during the pandemic, for instance contacting healthcare professionals who were very busy and not open. Therefore, we did not get a sense that that was a major step forward, unlike, say, remote assessments, which were skewed as an overnight change that was noticed and that people wanted to continue.

We think that any move to being more flexible about what you are willing to gather is useful, especially the comments to be more sympathetic and supportive of claimants views are very important steps forward and things that we would like to see happen, but we did not observe it as a major change.

Q71            Shaun Bailey: That is interesting. To the other panel members: have you had similar insights from stakeholders?

Evan John: Yes. We do welcome a lot of the flexibility that has been introduced in response to the pandemic. People have had different experiences. For some people it has been quite positive. I can think of one deaf-blind person who said that he preferred to have an assessment over the phone in the comfort of his own home rather than being made to go to an unfamiliar location with all the troubles that that involved with accessible transport.

For other people, though, who perhaps need specialist IT equipment as a result of their communication needs, virtual assessments have not been that feasible. Going forwards, the important thing is that people have a choice for the assessments. People with complex disabilities have very different communication needs and sometimes somebody with the same condition or impairment might prefer a different method to somebody else, so the important thing is that it is the DWPs choice but that it is the choice of the person being assessed.

Something else that we ought to be aware of is that as the DWP broadens out the range of assessments available, it needs to make sure that everyone is able to be assessed equally. For people with complex disabilities that will often mean the provision of communication support, like BSL interpreters. The DWP needs to make sure that there is provision for communication support in those, whether over the phone or on virtual online assessments. If that is not available for whatever reasonbe that a dodgy connection or a translator not being availablethat should be postponed and carried out at another time to make sure that people are not put at a disadvantage.

Q72            Shaun Bailey: That is really interesting. It is interesting because when we have spoken to DWP, particularly during the pandemic, the one thing that it has highlighted is the fact that it has continued face-to-face. It has been something that it has lauded as an achievement. We have seen it as a response to the pandemic but do you think it is more broadly bedded into DWP now: the idea of the need to be flexible and the need to be a bit more bespoke in how it delivers assessments?

Anecdotally, when we have heard evidence, one of the big things it has talked about is, “We have still managed to do that face-to-face assessment in as safe a way as possible”. I am keen to understand from the panel whether you feel that that is baked in or that there is still work to do there to try to get the culture of flexibility embedded into DWP in its approach to assessments.

Sophie Corlett: Yes, we think there is still more work to do to make sure that that is a choice for people. We are finding that people are apparently offered a set thing and then that turns out not to be the set thing that is going to work for them. Either because they do not have privacy at home and having a conversation at home is not going to be appropriate or because they want to be supported by somebody or because they do not have good broadband, whatever it is, so people want a face-to-face assessment. Or the face-to-face assessment is going to be absolutely what is not helpful.

People want the method to be something that they can do and feel comfortable getting to but also, for some people, a particular style of interview is going to be much more difficult to express themselves in because they find a phone gives them greater anxiety. As other witnesses have said, people are different and their circumstances are different so choice and not making assumptions about what somebody’s choice might be is going to be important and we do not think that that is embedded as yet.

Hannah Nicholls-Harrison: From our perspective, we welcome in the Green Paper that the Department put forward that commitment to rely on paper-based assessments and to have increased flexibility. However, in order for those changes to be successful, it is dependent on how DWP engages with supporting evidence. That includes giving more time for forms to be submitted and giving more weight to the evidence that has been supplied by the people who know the claimant.

Without those changes I do not think that the flexibility that we would like to seeand we know would be critical to making sure that the right decision is made from the outsetwill be successful.

Louise Rubin: Probably the elephant in the room here, for us at least, is that, while there is additional flexibility in the format of the assessment, whether it is virtual or face-to-face, is great—it is very much welcomed by us and the people we supportthere is still very limited or no flexibility in the assessment itself. It is not a dialogue. Unless that changes we are not going to get to the radical reform that any of us on this panel want to see.

It does feel very much like tinkering around with a system that is fundamentally broken. I think we are going to come on to that later in the discussion. It has to be said that these sorts of changes are great if we are working within the system we have but I do not think many of us want the system that we have, where ultimately you cannot have a natural conversation about the way your disability affects your life. You can only go through the descriptors and score points on closed questions.

Q73            Shaun Bailey: Chair, can I touch on the Health Transformation Programme very quickly? I am keen to hear from the panel in respect of the Health Transformation Programme that has now been restarted by the Department, if they have anything they want, particularly through the Department trialling—I think we have touched on some stuff already—but any concerns around the programme as well. I know this is an ongoing discussion the Committee has been having so I would be keen to get some brief insights from members of the panel.

Louise Rubin: Two things for us: following on from the point I just made, we think it would be great to trial more flexible approaches to the assessment, so the use of open questions rather than the prescriptive model that we have now. Secondly—and perhaps not a surpriseis we would very much welcome DWP trialling our suggestion of appropriate assessors through the transformation programme.

We are a little way off that at the moment, but that would be a great step forward for us to put into practice this suggestion around being able to select the category of assessor that feels most appropriate for you and to see what impact that has on getting the right outcome first time around.

Q74            Shaun Bailey: Does anyone else have any further insights on that?

Evan John: Yes. With Sense, we think that some of the things that have been trialled in the Health Transformation Programme are positive. We support merging back office administrative functions to make sure that the ESA/UC process works better.

We do have concerns about further integration. The DWP has been very clear that this should not lead to a merged assessment, and we welcome that. We do think it is important that PIP and UC or ESA retain their separate character, and it does not become an integrated assessment.

Hannah Nicholls-Harrison: Just to go on from what Evan was saying. As the Disability Benefits Consortium, we spoke to our members in consultation on the Green Paper response, and every single member we spoke to said in no uncertain terms that they would be against a single assessment. While we are very supportive of integrated IT, we are very much against a single assessment or merging. PIP and ESA are very different benefits and they assess different things and require different information. We think that it would exacerbate people’s stress in undergoing PIP and WCA assessments if, in a single stroke, it can knock out all financial support and leave the claimant in serious hardship.

Charles Smith: An additional point: another key aspect of the Health Transformation Programme is moving services more online. That can be very useful for a lot of people, especially a lot of disabled people who can use adapted technologies, but we also know a lot of disabled people have problems with digital access.

One thing to emphasise there is we need to both maintain offline methods and invest in offline methods of applying, and also make sure any innovations and changes that are happening to make the process better are happening in the offline methods as well as on the new platform. Because we think going forwardand probably for as long as we can seea very large number of people will need to apply offline; far more than applied for certain other benefits.

Q75            Neil Coyle: To come back to the assessment process. I think most of you support the right first-time approach but, in order to deliver that, the Department needs to learn what has gone wrong with previous processes, for example. How effectively do you think DWP does that?

Sophie Corlett: We do find that DWP and providers do engage with us, and we put them in touch with people who have experienced the system and they listen to that. What we find is that the changes that one would expect from that are not put into practice. As others have said this morningand as I have saidthere are fundamental problems with the system and we see tweaks and tinkering and not the fundamental changes that we need to see.

The system is not transparent and is not consistent. It does not seem to be set up as a way of supporting people to live a decent life while they find another job or to support them with their day-to-day activities, which is the purpose of PIP. It seems to be more about finding reasons to withhold that support from people. That is not what the system is for. It does not help people and, in fact, decisions are overturned expensively at appeal.

That is why we would argue for an independent regulator, which would oversee that transparency, which would oversee the consistency, and that would improve the effectiveness of the initial decisions.

For the processes of assessment and both the way that assessments are set up and the questions that you are asked, making sure that those are more open questions, more pertinent questions to somebody’s condition, we would suggest not so much smaller tweaking, focusing on individual bits and bobs, but to have a commission that is led by people with disabilities who have been recipients of benefits; who have gone through the system and who can suggest how that system might be improved on the basis of their experience, and that they might talk to benefits advisers and support workers so that that can be a much more comprehensive look at the process?

We find that people come out of their assessment traumatised because of the sorts of questions that are asked and because they have been asked about whether they have attempted suicide. They have been asked by people who do not understand mental health and who are not in a position to support them once they have surfaced those traumatic experiences. This is something that we have raised over the years.

A bit of training about mental health or a bit of direction about questions is not helping that underlying element of how the processes are set up. Something more fundamental around a commission that looks at things in the whole would be a much more appropriate response.

Charles Smith: I agree with a lot of that. Another general point to make is that DWP engages with us and the sector quite a lot. We all go to a lot of workshops. There has been lots of evidence gathered. Also, it is engaging more with disabled people in general. We do not necessarily see or understand the results from that, but the other thing we are certainly not aware of is we do not see DWP learning from the very specific mistakes. There does not seem to be much, or certainly we are not aware of, much feedback where cases have been overturned at tribunal. “Why did this go wrong?” Either saying that to the individual that got it wrong or saying what the common threads are among these—I cannot remember the precise figures but thousands of cases are getting overturned each month.

To learn those lessons more consistently would help to improve the service and to do that publicly and honestly. Not on a case-by-case basis but published general findings would be a major step forward in transparency. That would indicate that the DWP was an exception that when things went wrong there need to be changes and need to be reforms directly.

Neil Coyle: You are all attending these stakeholder groups and you are telling the Department that the overall process is not working the way it needs to. You are giving specific examples or specific problems but you are not getting outcomes. Are there any other points?

Evan John: We do have a lot of quite positive constructive engagement with a lot of officials across the DWP. However, at Sense, what we find is that what is agreed in a policy meeting is not necessarily what is going to be implemented on the ground. Therefore, the people that we support in our own employment services tell us that things have not changed that much for people with complex disabilities. If you look at the appeals rate, it is 76% success rate for an ESA, and that has gone up in recent years. While there are small changes as a result of these discussions overall it is not making a difference.

If we look at some of the most significant changes that have been madefor example the increased flexibilitythey have come in the past 18 months, and the DWP has done quite a lot to make assessments more flexible. The DWP is definitely capable of doing it but we need to make sure that that is done in response to mistakes and not only in response to—

Q76            Neil Coyle: When it was in the Department’s interests to make it more flexible it was done quickly. When you have asked for it to be more flexible for you it has not been done. Are there bits of the Department that perform better at taking on board or learning lessons or the assessors themselves, the providers? No one is indicating, I think that says it all.

The Department told us last year that the National Disability Strategy commits to reviewing the way the UK Government engages with disabled people through discussion with disabled people and disabled people’s organisations and charities. Is that underway? Are you part of that process?

Louise Rubin: Yes, in terms of the National Disability Strategy, there was a concerted effort to reach out to disabled people and to gather their views. Unfortunately, there were also quite a lot of problems within that process with, for example, surveys not being accessible and people feeling that they were not able to engage the process because it was not accessible.

The problem is fundamentally the trust between disabled people and the Department for Work and Pensions is at such a low level that, even where it does make a substantial effort to carry out that sort of engagement piece, it is just not working with disabled people. They do not trust the questions themselves. They do not trust what will come out the other side of the engagement process.

We are probably in quite a dark place at the moment in terms of engagement between the Department and disabled people.

Q77            Neil Coyle: Turning that dark place into the sunny uplands—which I think I remember someone talking about—how does the Department rebuild trust? What does that look like to your organisations and the people you serve?

Sophie Corlett: We do need some fundamental change to the processes and our recommendation of a commission, where you put into the hands of disabled people a reassessment of the process, so you can take the adversarial nature out of assessments, for instance, you can start from the position of belief rather than a position of disbelief, where you have more transparency and consistency across the system. Again, I come back to the recommendation of a regulator, which can go in and require information to be put forward, which will publish reports and make recommendations that then have to be followed.

Those sorts of processes, where people are invited directly into the system to help change it and where the system becomes answerable externally to an independent regulator, are important.

The other very basic thing is: we have had some productive conversations with officials and set up focus groups for officials to meet with people with lived experience. Just feeding back to people what changes they have made as a result of those conversations. Because those conversations have been very positive but just to close the feedback loop.

There are both small things and more fundamental structural changes that we would recommend.

Hannah Nicholls-Harrison: We recognise and appreciate the efforts that have been made to improve engagement between DWP and disabled people and disabled charities recently. However, to echo what Sophie was saying, fundamentally we think that the work capability assessment in particular is not fit for purpose. It does not take into account the full impact that someone’s disability has on their lives or their ability to work. It focuses on implementing conditionalities and sanctions rather than positive support. It is that focus on conditionality and sanctions that makes the process so stressful for people with a learning disability. We find those people are often further away from the labour market.

It is not just tinkering with the system but a fundamental reform on how at least the work capability assessment functions.

Neil Coyle: Anything else specific on rebuilding trust?

Louise Rubin: When we talk to our supporters and the people we work with about trust and the DWP there are a few things that keep coming up. One of them is around this issue of targets. Lots of people are absolutely convinced and certain that there are targets that the Department is working to, so people tell us, for example, Capita has one purpose and it is to fail as many claimants as possible. It works to genuinely cut people off from benefits and then it receives a large bonus for doing so. Those types of narratives are common and widespread.

When we talk about trust, we also hear a lot about informal observations and how that erodes trust in the system. People feel that it does not matter what they say, people are going to make a judgment based on what they are wearing or how they look or how they move before the assessment begins. As Hannah said, sanctions is another issue that erodes trust. Those are some key places to start.

If DWP wants to do something about this trust or mistrust in the system, transparency in how it uses evidence and the assessment process would help. Letting people understand what it is weighing and what it is not including, ending the use of informal observations or, at least, being a lot more up front about how they are used, and then removing the use of sanctions. Those three things would make a difference.

Q78            Neil Coyle: Sophie has already indicated that Mind would welcome an independent review that goes wider than the formal reviews. Is that the position of all organisations? Would you welcome another independent review of both assessment processes? I can come back to Sophie, if there is something you want to add, but you have given a fairly comprehensive answer.

Sophie Corlett: I do not know that we would welcome another independent review. We have had quite a lot of reviews; we now need to take some action. I would put that into the hands of a commission of disabled people to take forward. There are a lot of changes that need to be made and a commission of disabled people who could not just review it from the outside but could start to make proposals and see those proposals through. Then we would look for an independent regulator, which would then be an ongoing system that would oversee the transparency, the reliability, the legality, the effectiveness of the system.

Neil Coyle: You want a commission rather than review.

Sophie Corlett: Not to just review but to start to implement.

Evan John: We do not have any position on whether it should be a commission or a review. We would definitely agree with Sophie that we have had a lot of reviews and the problems that face people with complex disabilities and the welfare system are not new. They are things that we have expressed again and again, and they have been highlighted in the reports.

What we need to see is those problems being addressed. Whatever happens, whether it is a commission or a review, there needs to be action afterwards.

Neil Coyle: Any other thoughts on that? Charles, you have been indicating.

Charles Smith: I agree with that and reviews or commissions can be very useful, especially for more radical redesigns of systems. There are so many changes we know should happen. For instance, reforms of important observations, sharing reports automatically, and the pandemic showed with the introduction of flexible assessments that we can make changes a lot quicker. Any review process and more radical reforms should not get in the way of making changes we know could be useful right now.

That brings us back to the trust point. You have to remember that the main engagement most disabled people will have with the system is their own assessments. Anything we can do to improve the quality of them, make fewer mistakes and make them less distressing or humiliating will be helped to improve trust because they will have a better experience. That is important as any kind of formal engagement event or something like that.

Q79            Neil Coyle: Therefore, any review in the future should look at whether recommendations and findings of the previous reviews have been implemented seems to be coming through. The impact on disabled people of the assessment process itself should form part of that review; I think everybody is nodding on that.

Do you think value for money should form part of any review of the assessment process given the amount of money: tens of millions spent on mandatory review and hundreds of millions spent on tribunals and, of course, the assessment provider costs? Do you think value for money should form part of any review of the assessment process because if it is right first time then there are savings to be had?

Evan John: Definitely it would be the case that if things were done right it would save money, but we would caution against any approach based on financial savings just in case it was used as a way of reducing the amount given to disabled people. I know that is not what you are suggesting but there would be a concern if value for money was considered as part of that, in case it was used in that way.

Neil Coyle: If it gets the outcome for disabled people then it would be welcome. Louise, you were indicating then I think the Chair wants to move on.

Louise Rubin: Essentially the same point. Value for money, that is not our primary concern. Our concern is about the lack of humanity in the system and the impact it is having on disabled people. I do not think you can have a review that does not look at the value for money.

Q80            Shaun Bailey: One final question from me: one of the things that we have talked about or we have heard a lot about is this move to an in-house model of assessment that perhaps DWP could try to do. As a panel, do you think in-house is a better approach to take and what are the potential pitfalls for that as well, if the Department were to try to bring this in more broadly, that they might have to be mindful of?

Evan John: Sense do not have any position on whether it should be in-house or carried out as it currently is. What we would say is that the problems that people with complex disabilities face are replicated across the system. It is not the case that it is just at the assessment that people are finding that people do not understand their conditions or impairments. It is the case that people in employment services say that it is in the jobcentreswhere they call the DWP at every stage of the processthat they are encountering difficulties.

The problems are very widespread so whatever happens, whether it is done in-house or it stays as it is, then there should be efforts to improve the problems and the lack of disability awareness that is clearly happening across the system.

Shaun Bailey: That is useful. Does anyone else want to come in on this at all? No, I do not think so.

Q81            Chair: Can I just follow that up? Do you think what we are looking for here is a refinement of the system that we have at the moment or is what we need a fundamental overhaul of it? Sophie, I think you are looking for a fundamental overhaul with the commission that you have described. What is the view of others?

One of the concerns sometimes expressed is, if you try to overhaul the whole thing, there will be massive upheaval and lots of difficulties potentially for the people who are being supported by your organisations. What is your feeling about the balance of their interest between fundamental overhaul or a refinement of what we have at the moment?

Louise Rubin: At Scope we are looking for a fundamental overhaul in the longer term. Like others, we feel that there have been many small changes over the years, lots of tinkering with the system, but that has not led to the outcomes that we all want to see. We did a piece of work last year with the Social Market Foundation looking at this very issue. One of the things that we focused on is that of all families who are relying on disability benefits at the moment 42% are still living in poverty.

For us, that is the big picture; this system that we have is not lifting people out of poverty. It is not having the outcomes that we all want in terms of moving people closer to work. We are seeing 12,000 PIP decisions overturned every month and we have talked and heard again and again about the stress, the anxiety and the general negativity that goes with this system. We do not think that we can have the system that we want to see by constantly making more changes. It does need fundamental reform.

We know that that is not something that can happen quickly or overnight. That is years in the making. As Sophie said, the most important thing is that that change happens with disabled people involved in it from the outset. Any new system has to be produced so that it does the job for disabled people.

Q82            Chair: I saw Hannah and Charles indicating. If you can keep the comments quite brief, that would help us.

Hannah Nicholls-Harrison: At Mencap we want to empower people to achieve their aspirations. Having to describe in detail their limitations year after year, and how those functional capabilities have not changed, is demoralising. Instead, we want to see a reform where there is a holistic assessment of the barriers that people face to work and that is separate from an assessment of disability-related costs—so a personal independent payment—and taking into account factors like employers’ attitudes, mobility needs, lack of transport and skills gaps.

This kind of holistic assessment would need to be able to respond to the individual needs. It would also need to acknowledge that some people may never be able to work.

Charles Smith: Essentially, we agree with the need for fundamental reform. We also agree it is going to take a long time. That does not necessarily have to distract from making the system better while we do that because a lot of the problems that we have now will be problems in any system. For instance, gathering medical evidence for future assessments and that kind of thing. Obviously the speed of change and the pandemic showed that some improvements can be made quite quickly. They probably will not be sufficient to have the social skills you would want but we should not delay on those for several years’ worth of reviews, and so on. I think we can do both at the same time.

Chair: Thank you all very much indeed. You have given us a great deal to think about in that session. Thank you for joining us. That concludes our questioning of the first panel.

Examination of witnesses

Witnesses: Joanne Gordon, Morgan Vine, Helen Wild and Marc Francis.

Q83            Chair: We move on and welcome the second panel. Marc Francis is going to be joining us in the Committee room here. He is going to take his seat in the middle there. Welcome to the three witnesses who are joining us on this panel virtually. What I would like to do at the startas I did at the start of the previous session—is ask each of you very briefly to tell us who you are. I will start with Joanne Gordon.

Joanne Gordon: Hello, and thank you for inviting us. I am the chair of the Asbestos Victims Support Groups’ Forum. A lot of our expertise this time will come through industrial injuries disablement benefit as well as looking at terminal illness.

Morgan Vine: Hello, I work for the national older people’s charity, Independent Age. I am specifically here to share findings that we have around the benefit Attendance Allowance and the health system related to that.

Helen Wild: I work for the Down’s Syndrome Association. I previously worked for the DWP as a decision-maker for a few years. Thank you for inviting me.

Marc Francis: I am Marc Francis from Zacchaeus 2000. We are a welfare rights and anti-poverty charity helping people in London with social security issues. In 2019 we helped 450 disabled and seriously unwell people appeal against the DWP decision on ESA or PIP and taking them to the tribunal. Over 90% of those that we got a decision on that year won their appeal. We have had over 200 in each of the last two years, despite Covid as well.

Q84            Chair: Thank you. Can I start with the first question to you? This is a straightforward question: I am very interested to know your answers to it. From the point of view of the people that you are working with, has PIP been an improvement on DLA?

Joanne Gordon: Our expertise is mainly industrial injuries disablement benefits, so we only have a small proportion of people that claim PIP, as most of the people still with asbestos-related diseases are elderly. Most of our experience is Attendance Allowance so I do not feel I can add into this question.

Morgan Vine: I am going to have to agree with Joanne because we represent mainly people over 65. Some of the people that call us do go through PIP claimants, and I know that there are challenges and I listened to the previous session to hear more about those. We have less experience on that so we focus more on Attendance Allowance and things like that, sorry.

Chair: Understood. That is a very fair response.

Helen Wild: Yes, we do have. I have had quite a positive experience. I predominantly deal with Disability Living Allowance, which is where most of my appeals are made up of. Moving from DLA to PIP has been more beneficial for our members. They can explain better, the form is better for people who have a learning difficulty, through what our parents have found. There is a lot of worry about claiming it initially but once they go through it, they are guided through it, we found it is beneficial for our members certainly.

Marc Francis: We are a welfare rights charity. I am supporting people at the end of the process who have had a negative experience or a negative outcome but, in our view, it has not improved the situation at all. In fact, it has made it much worse.

To be fair to the Department, it says that over half a million people have received an increased award as a result of the transition from DLA to PIP. That is obviously beneficial for those applicants but the figures also show that around 700,000 people have received a reduced award. These are DLA recipients who have received a reduced award or lost their entitlement entirely. Over 700,000. Those are existing people that were in receipt of a benefit.

Figures also show that in 2020, 58% of new PIP claims were rejected; that is 300,000 out of 500,000, and claims were rejected as well. Even those people that are made an award at the end of that, sometimes are made an award that is less but they also undergo a process of assessment and decision-making that very many people find demeaning and extremely stressful.

I want to mention something in the research that DWP commissioned. Qualitative research—following your predecessor Committee’s inquiry, in fact—which was published last summer. It reported that claimants who participated in these focus groups—they were not self-selecting, they were directed towards the researchers by the DWP—they described the process as being stressful, worrying, daunting, overwhelming, emotional and repetitious. That sort of feedback is something that we see commonly from the people that we represent both taking up MRs and especially at the appeals as well. I do not think that is reflected in DWP’s Green Paper. I do not think it is reflected in the evidence that DWP has submitted to the Committee either.

There are hundreds of thousands of people losing out financially as a result of the decisions but many more who are also undergoing extremely stressful situations; the kind that your previous witnesses talked about.

Q85            Chair: Helen, from your point of view—we are talking largely about parents going through the process in your case—you have seen some improvement in what they are experiencing?

Helen Wild: Yes, the decisions coming out at the end are an improvement but the face-to-face can be demeaning and humiliating. If there is a face-to-face assessment and the parents or the appointee, as they are, have to say what a young person cannot do, a young person thinks that, “Hang on a minute, I can do that” but we do not see the support behind it. That is a humiliation. It can cause a lot of stress and a lot of upset. Paper-based assessments are a lot better. I think when they are younger or in that kind of situation there is not a lot you can get out of it.

The other thing is sometimes the young people are taken at face value when they are asked, “Can you do this kind of thing?” and they will say, “Yes” and then the parents are saying, “Well, no, they cannot”. It is all the conflict and that is not a nice side of it. However, the results from it have been better, in my experience.

Chair: DLA was paper-based, wasn’t it?

Helen Wild: Yes, it is. That has its own problems. That is predominantly the bulk of my work—Disability Living Allowance—but moving on to PIP, yes, the decisions have been better. I get less appeals and things on PIP.

Q86            Chris Stephens: Following on from that, Helen, your written evidence discusses supporting people with Down’s Syndrome and the families and carers and the transition between claiming DLA as children and PIP as adults. Do you think there are ways that transition could be smoothed so it could be easier for claimants?

Helen Wild: I think paper-based took longer, clarity from the DWP about the process and what to expect. Parents have letters and the letters are a little bit ambiguous. They invite them to claim PIP and sometimes parents have left it and thought it was an option, and it isn’t, so they get turned down. The benefit comes to an end. It needs to be a little bit clearer.

Some of the appointee letters that they get at that time are quite threatening. A lot of parents worry about that. I think paper-based for a little bit longer would be better, certainly from 16. Existing evidence should be relevant. Down’s Syndrome: people are born with the condition. It is not going to change. Their needs are going to be the same and, as they get older, the needs are likely to increase. A longer period of award would be better and it would take the stress off the parents.

The other thing is we have a lot of elderly parents. They are filling in forms for a 57-year-old son or daughter, and they are in their 80s and they should not have to do this. It is having to prove that the person has a disability over and over and over again. It would be welcome if the assessments were less frequent and the awards were a little bit longer.

Q87            Chris Stephens: Young people in Scotland receiving DLA can now continue to get it until they turn 18. Do your organisations have any views on that, and whether that should be extended to the rest of the UK?

Helen Wild: That is an excellent idea. It should. Because at 16 there is a lot of conflict, a lot of hormones flying about. The face-to-face assessment is not good, it is not helpful, and if that could be started at 18 it would be better.

Q88            Chris Stephens: Thanks very much for that. Marc, if I can turn to you. The application processes accessible to people you support, which I would imagine would also include elderly parents and carers, is that accessibility reducing and, if so, how can processes be made more accessible to claimants?

Marc Francis: Where we have tried to focus our resources is towards supporting people with MR—mandatory reconsideration—and appeal, as opposed to initial assessments. However, because so many of the people that we have supported to take an appeal to the tribunal have ended up coming back, because they have been put in the pot for reassessment again, we have been investing quite a bit in that.

Your previous witnesses have said a lot about this. We see as well that the claim forms themselves are difficult for many people to complete on their own. That should be a starting point in the kind of social security system that we want to see. That people are able to complete these forms without a huge amount of advocacy. Obviously a little bit of help from friends or family; that is understood, but it has continued to be very difficult for people to pursue those.

What I would say beyond that, is that pursuing a successful mandatory reconsideration or appeal is even harder than that as well. There continues to be lots of problems with the initial claim and assessment process.

Q89            Chris Stephens: I am now going to turn to questions about the Attendance Allowance. Morgan, thanks for being here. In comparison to other benefits, we have heard very little about Attendance Allowance in written evidence to the inquiry. The RNIB even describes the assessment process as broadly working well. Is it a case of no news is good news or are there problems with Attendance Allowance you would want the Department to address?

Morgan Vine: There are definitely some problems with Attendance Allowance. I should also let the Committee know I am a trustee for Age UK Bromley and Greenwich. Therefore, as well as my day job with Independent Age, I have also spoken to some of the volunteers for Age UK Bromley and Greenwich, who support people to go through the assessment process. I am trying to bring both perspectives.

First, about the Attendance Allowance, what we hear is that the form is really long and quite difficult to fill out. If you are faced with a 30-page form, having to detail everything you cannot do and you are on your own at home, obviously that can be quite a traumatic experience to go through. We also hear more practical problems, for example, people think that if they say, “I have Parkinson’s”, that is enough. They do not know what they need to detail: what does that mean in your daily life? What are you unable to do?

We think it would be helpful for the application to have more examples of what is needed. Also, the guidance could be improved around the fact that people are allowed—and probably should—repeat. Again, if somebody has put an answer in a question up above and then on page 25 they think, “Oh, I have already said that, I won’t say it again” it could mean that they do not get something. Our advisers are constantly telling people, “You will need to say the same thing at regular points throughout the application form”, and that does not come naturally to people.

Also, what we heard from somebody who volunteers to support people to fill in the Attendance Allowance Form, is that there is quite a big difference between coping with something and making do and then what you actually need to happen. For example, if somebody is coping with having a bath once a week, if they are filling out the Attendance Allowance form do they think, “Oh, well, I am coping. That’s okay”? Or do they know to say, “I need support to wash and I need that on regular days” because they have been coping with it before?

We think there are some bits of the application process that could be improved. That more information and guidance could be given to the person filling in the form. There is also this problem where there is not enough support out there to help people fill in these forms, and the benefit of having a volunteer is, a lot of the people we speak to say things like, “There are people worse off than me. There are other people in worse boats”, and then you can hear that they are breathless and that they cannot get from one room to the other, but you only observe that if you are with them.

Covid has meant that volunteers cannot safely go into people’s properties in a safe way and have not been able to do so for quite a while. That is something that needs to be tackled to make sure that they are getting the most accurate representation of somebody’s situation.

Q90            Chris Stephens: Do you think the length of the form or the size of the form is off-putting?

Morgan Vine: Yes.

Q91            Chris Stephens: Is it the number or the same questions being asked repeatedly in a form, as you have indicated, or do you think that people who are applying would view that with some sort of suspicion, or, again, is it just off-putting for people to apply?

Morgan Vine: We have not heard directly in the same way that I know it does happen with other benefits. We do not hear directly that people are suspicious or think that they are trying to be tricked out of not getting it. It is more that they do not understand the level of information that is needed to put into that form. That would be a simple fix: just giving some clear examples, making sure that the guidance behind the scenes is updated and is more relevant for people so they can understand what would be useful to add to the form. In terms of the length, we definitely know it puts people off.

Also, there are lots of misunderstanding about what the benefit is for and who would qualify for it. To give the Committee some context, it is the most requested briefing that we do and the information guide on the Attendance Allowance is the most requested one from the older people that we speak to. It is something people do not know about and they are seeking out the support of charities to try to find out more about it, and then they are potentially faced with a massive form that they do not know how to fill in and give up on.

Q92            Chris Stephens: Thank you very much for that, Morgan. Joanne, as you indicated, your organisation supports people in Attendance Allowance. What other significant issues here which you feel need to be addressed in relation to the Attendance Allowance process?

Joanne Gordon: A positive point, for Attendance Allowance—as with PIP—for people who are terminally ill advisers can sign the form. That is very important that we can sign those forms. One issue that we have at the moment is to do with DS1500. We know that the Government are changing the criteria for what “terminal illness” is from six months to 12 months. We would like to see that quicker.

Also, they have indicated that it is going to be piecemeal and that it is going to happen with other benefits first, like Universal Credit. It is important that it is not piecemeal because it would be very confusing for healthcare professionals if they do not know why they are filling in a DS1500 and for which benefit. We would like to see that happening across the board for all benefits. I think that is very important.

Q93            Chris Stephens: Thanks very much for that, Joanne. Marc, just a last question. The experience of your organisation: what works well about Attendance Allowance applications, is there anything the Department could learn from that process that could be put in another process?

Marc Francis: I should say we help people with working-age benefits and we tend to focus on means-tested as well because that is where we feel the need is greatest. One of the key issues that should be mentioned about Attendance Allowance is take up is always a challenge. It has been known about for a very long time, and more effort needs to be done both nationally and locally to ensure the take-up of Attendance Allowance. The most important thing about Attendance Allowance is that it is determined on the basis of the application rather than the very different approaches that are taken under PIP. We believe that what is right for that older group of citizens should equally be applied to those who are of working age and, in fact, as it is for children too.

If I could come back to the point that you mentioned about the transition of children from DLA to PIP because I had not quite understood that you were focusing specifically on DLA? The point that we would emphasise, accepting fully that there are some groups of disabled children that perhaps might be getting a better experience in this transition. The figures overall for disabled children with varying disabilities and conditions, do not necessarily bear out an improvement in performance or accessibility for those benefits because there is a very high rate of refusal.

We see a handful of those cases, as compared to the Work Capability Assessment appeals or the PIP appeals that we do. Every year we see a number of those cases where children have lost out in that transition. Especially given the nature of these kinds of cases, we would have expected the Department to have a much stronger focus on getting those decisions right, and for its performance in terms of refusals and disallowance to be different than it is for the regular applications or claims. The figures do not seem to bear that out. Those figures are in DWP’s own evidence pack for its Green Paper.

Q94            Chris Stephens: Would you like to see young people in London receiving DLA and for that continue until they turn 18, as is the case in Scotland?

Marc Francis: We would like to see a benefit that is based upon Disability Living Allowance continue for working-age people. That is what we would like to see. There are some advantages to the move over to PIP, which I talked about at the outset, particularly as people have gone from lower rates up to the new standard rate—middle rate in old money. Overall, the number of people that are losing out is so great that there needs to be a complete fundamental reform of the system, and we would say a shift back towards a system that is much more paper-based and based on the evidence and testimony that disabled people themselves are putting forward, so yes for children but also for working-age people as well.

Q95            Shaun Bailey: In terms of the support arrangements the DWP offer, I am picking up the impression of what the answer might be from the previous panel and from what you have just discussed. If you were thinking of a specific intervention what would you want to see? I know we have talked a little bit about this idea of DWP for an independent advocate role. Where do you see that role being? Where is the scope for that and what is the best way for DWP to be targeting those interventions? Clearly, what I have picked up from listening so far to this panel is the need for DWP to be cognisant of the fact that targeted interventions are allowing people to navigate the system is important.

Marc Francis: I would like to draw that into not just being about what DWP can do but what Government as a whole can do. Our view is that the loss of legal aid for the vast majority of social security work has removed that part of the welfare state at a time when disabled people needed it most. Post-2011 is the key moment when Work Capability Assessment started coming through, and you can see the huge spike in the number of appeals that went through pre the introduction of mandatory reconsideration. People really need support at that level, so we would strongly encourage the Government as a whole to think about how they can support people in this process of appeal, which is their right but many people are not able to pursue that right of appeal without some kind of advice and advocacy. I want to stress that point.

Within the Green Paper, there is a recognition of the role of advocacy and that is important. You have heard today from other witnesses whose organisations invest a lot in providing that kind of support for people. We would support an expansion that is backed financially by the Government in that kind of work and activity. It is important when people are filling in those very long paper forms, or hopefully being able to do that a bit more online these days, that they have that support. We do think that that has an important role to play.

We do think that the kind of approach that has been taken under Universal Credit has advantages in terms of it being on a national scale and presumably having economies of scale that are introduced there. We also think that there were benefits to the previous iteration of that universal support where money was allocated at a local level, and then decisions were made locally by authorities about how that money might be allocated to ensure that they are maximising what is happening there.

What we would stress, first of all, is an emphasis towards the MR and appeal stage where people have lost out, as opposed to putting all the money up front. We want decisions to be right the first time and that will be helped by advocacy at that stage. Certainly, there needs to be a balance at the various stages where the money goes; also, in terms of who holds that money and makes the decisions about how it is used.

Q96            Shaun Bailey: Really useful, thank you, Marc. Morgan, what are your insights on what Marc has just said? Have you anything to add to that?

Morgan Vine: Just to add to that. I think there are target interventions that could be made. At the moment, as far as we are aware, the DWP does not publish anything about how many Attendance Allowance claims are successful. It does not publish estimates to who it thinks might be eligible, so it is hard to know how it can start those targeted interventions without that information being public and bringing people into the fold, like charities and ourselves, and letting us talk to older people about what would work better and what has not worked.

There is also a bit of a track record here that we are concerned about, independent age because targeted interventions, when it comes to benefits for older people, are not there. We do a lot of work on Pension Credit, which I know some of the Committee have spoken to us about, there are some real problems with the number of people who are eligible for Pension Credit and do not receive it. We have been asking the DWP to do some targeted interventions to increase that take-up rate from 60%, which it has been at for about 10 years. We are just not seeing enough change. With things like Attendance Allowance, Pension Credit, when it comes to people in later life there is definitely more that could be done.

Just to add to that. There is something around formats. I think it is wrong to assume that all older people need things offline. Of course, we need that option to be available and paper-based. With Attendance Allowance you have to post the form back in physical form. There are some Apps available with information but there is no option to e-mail the form back, although you can download it from the internet. There is a bit of a mixed message of ways to get this form to the DWP in a quick and timely manner, and how to fill it out. How do people get hold of the form? Do people have a printer that can print 30 pages and if they make a mistake, print more multiple times? All of that kind of stuff is important.

The key ask we would have is for the DWP to give people a choice. They can go and collect a form, they could download, send it by post, they could fill it in online and submit it online or by e-mail, which currently isn’t an option for people. That is important to consider and could be quite a quick fix to get more applications through.

Q97            Shaun Bailey: That is helpful. You said there you are not seeing that change when we talked about the approach to Pension Credit. Is that because DWP are unwilling to do that, or is it more a systemic issue that DWP has yet to find a solution to? I am keen to understand that bit.

Morgan Vine: There are lots of “willing” there and we have regular meetings with civil servants at DWP on the Pension Credit issue, for example. I do think there is a hesitancy to try new things. We have been suggesting: is there partial auto-enrolment, for example? We do not even know where these people are. How can we target awareness campaigns? It seems like a very blunt tool at the moment and there is a lot more that could be done to target, and I think that is within DWP’s gift but at the moment it has not happened.

Q98            Shaun Bailey: That is useful, thank you. Helen, can I bring you in just in terms of your insights?

Helen Wild: The comments about the form, because it is very sporadic. The DLA ones I deal with are paper-based. You used to be able to fill them in electronically and then I used to be able to help people fill them in and back and forth, back and forth. You do not seem to be able to do that, so there need to be more options for parents. If they want to do that online that should be an option. They should be able to submit that to DWP. I think DWP is still working on fax machines. It needs to be upgraded. Yes, I agree with the rest of the panel. I have nothing further to add.

Q99            Shaun Bailey: Thank you. Finally, Joanne, what is your insight on this?

Joanne Gordon: I agree with the panel, there needs to be a choice. Certainly, for advisers, it would be good if we could send forms back electronically. That is important, especially when we have people who are terminally ill. Sometimes we have had huge problems with the mail handling sites and forms have gone missing. Luckily, we do keep a scan but it is not ideal to find out that these forms have gone missing. We have had huge problems with the mail handling site, so to be able to do them online as advisers is good.

There needs to be a choice because we are dealing with elderly people who do not necessarily have the internet or can use forms online. We found that from trying to engage during Covid with the people we support, trying to do things online when not everybody wants to do that or has got the means to do that, so there does need to be a choice. Certainly, for advisers to be able to send things back quickly when people are terminally ill would be useful.

Q100       Shaun Bailey: That is great. Morgan?

Morgan Vine: To echo what Joanne has just said. If you can imagine an individual filling this in off their own back and the form goes missing, the motivation needed to refill another 30-page form by hand, restating everything is challenging. That is definitely a problem.

We have also heard from people who have said they are putting personal stuff in these forms, things like, “I cannot make it to the toilet sometimes so I wet myself”, personal vulnerable information. They are then sending this paper-based 30-page form. They do not know who is looking at it. Who is reading this information and how many people it is going through? More information on things like the process of how that form will travel through could reassure people, and potentially make them more able to share that information that they feel hesitant to.

Q101       Siobhan Baillie: I just want to declare an interest before I ask my question. My nephew has Down’s Syndrome. He is 18/19. When my sister was going through the face-to-face appointment with him, his favourite response is, “Yes”. He will say yes to everything because he always gets a positive reaction. When he was asked is he in a relationship?, “Yes”. Then he was asked, “Do you play for Redding Royals?” He would say, “Oh, yes”. “Can you run for a bus?”, “Oh, yes”, and my sister would say, “No, no”. The appointment was incredibly long and complicated and I think there desperately needs to be changes there, and we can all see that on the Committee.

The other learning from my family experience, and also in speaking to constituents, is that if parents of disabled children and adults do not fight every step of the way they will not have what they need at home. It is obvious—to Marc’s point—that if people are on their own then the system needs to change for them, in particular, not least for everybody. Thinking about the Health Transformation Programme. The Department has restarted that work again and we understand it is going to be looking to include platforms for disability and incapacity benefits. The point of the Transformation Programme was to look at how we can make assessments less onerous for claimants. We heard a lot about improving choice for the actual application options.

I will start with Helen. Would those proposals work for the people that you support, and is there anything that you would quite like DWP to try within this workflow?

Helen Wild: The good things are that data could be shared across benefits. DLA could be used for PIP. PIP could be used for ESA or the Work Capability Assessments for UC. The decisions could be faster, streamlined. Also, there is the option of notifying parents. I am saying “parents” because a lot of our members are not able to submit these forms themselves and they have appointees, which are the parents. Notifying when a form has been received, that it has gone to a decision-maker, keeping them informed of the steps rather than them waiting six months.

The panel mentioned we have forms that go missing, so routinely I tell parents to keep a copy of the claim form, send it “signed for” so they have proof. Even then forms go missing in the system and it should not happen in this day and age. In that way, digitising the system, being able to submit something electronically—brilliant—and they can keep copies.

The only thing is some people may not be computer-confident. They will always be better with a form. There should still be that option for people who are not as confident with the forms. It should not be that cut and dried. They should still be notified if they do have a Smartphone or an e-mail, which most people have now. They could still be contacted that way to say, “Yes, we have received your form. We are going to be looking at it”, and give them a timeframe as well. I think that is very frustrating for a lot of our members. Just say, “A decision should be made within this period”. Our parents have to ring and ring and ring. It is frustrating and they should not have to do it. There is a lot of stress involved in the process.

Q102       Siobhan Baillie: Thank you, that is a good checklist. Morgan?

Morgan Vine: The only thing I would add to that is to reiterate the point about different options, including things that might sound simple. It does seem strange to me that for Attendance Allowance you can download the form online, which implies that you could then e-mail it but then you are not allowed to e-mail it, even basic e-mail. There are other situations where Apps could be used and you can fill things out, and lots of people might be comfortable with that. Not to not be able to e-mail in an application so you have a record of when you sent it does seem a simple fix that could be in place.

Q103       Siobhan Baillie: Thank you. Does anyone else want to add?

Marc Francis: To add to the first of the transformation areas, north London, which is within our catchment. It might be noteworthy for the Committee that we have not yet seen anybody that we are aware of who is going through that process. You could make some positive assumptions from that. The key thing about the programme is about learning from it as a pilot before the Department starts rolling something out, getting too far ahead of itself. We would hope that the Department can be a little bit clearer about the work that is being undertaken right now rather than waiting for full evaluations further down the line, which is not necessarily going to be timely enough for the Committee.

The other thing I would say is about who is undertaking the assessments themselves. It is positive about the integration of the administrative personal information that is put forward, and that might be cross-referenced, obviously with the consent of the claimant involved. We are not yet clear who is going to be undertaking the assessments.

In response to a parliamentary question before Christmas, it was said that the Department is going to be recruiting but at the moment I think the assessors are employed by another company, not one of the three main assessor companies. The intention is that they are in-house employees of DWP, which we think has a potential benefit in terms of performance management of the quality of assessments that are being undertaken; so that is individual performance management as well as collective contractual performance management.

We think that there are real advantages to that. It is something we have argued for quite a long time now. We want to see that piloted and then utilised. I guess the learning brought back from that in advance of the tendering process for disability benefits getting too far ahead of itself. You probably know that the Department has already started the tendering process for its disability benefit assessments. We do think that there are potentially real advantages of an in-house service that should be factored into any decision about pursuing that.

Q104       Siobhan Baillie: I will go on to Joanne with a separate question. The DWP said it might look to combine some of the application and assessment processes for health-related benefits. If aspects of that process of collecting evidence for work capability and disability benefits were combined, what particular things do you think would need to be taken into account for benefits, like IIDB and DLA for children?

Joanne Gordon: We think Industrial Injuries Disablement Benefit should not be included in that process; we think it is probably even conflicting with what you could collect for other benefits. Industrial Injuries Disablement Benefit was meant as compensation for people who have industrial diseases, so we think that it would not fit neatly into a combined process at all. We heard in the last panel that people want a specialist service to be able to assess benefits, particularly for asbestos-related diseases. We have that. There needs to be a specialist and to take that away would mean that the assessment process isn’t working. We think that Industrial Injuries Disablement Benefit should be taken out of that process. It is very contradictory, sometimes you read things asserting industrial injuries is part of the process and sometimes it does not. We do, in Industrial Injuries, have a good relationship with the Department for Work and Pensions for asbestos-related diseases. The Forum campaigned for Phoenix House to be kept when we thought that was closing because we thought that we would lose a lot of expertise in that team, and also the good relationships that we have with that team. The Forum have asked for the Department for Work and Pensions to come to our meetings. That has been forthcoming and we have worked hard to have a good relationship with the Department for Work and Pensions for Industrial Injuries Disablement Benefit. We would like to keep that and I think any combining of the process would destroy the good work that has been happening in industrial injuries.

Q105       Siobhan Baillie: Does anyone want to add anything in terms of the children aspect?

Marc Francis: Can I say something about single assessment, if that is okay? I think from a welfare rights perspective, you have heard earlier about some of the anxieties of some of the disability charities as well, we are worried about the introduction of a single assessment, particularly one that is within this benefit regime of PIP and ESA and Universal Credit. The reason for that is that it puts all of the eggs in one basket.

At the moment, quite often we have people who are refused, after a Work Capability Assessment, who come to us and want an appeal. Instead of saying, “Go through Universal Credit while you await the outcome of your mandatory consideration”. We say to them, “Do not go down the route. If you can survive on the amount that you are getting from PIP then do that because we think there are advantages to you staying on ESA, as winning an appeal for you on ESA and then you benefiting potentially from transitional protection during any subsequent managed migration”. There are real advantages to that. The risk of people losing both benefits at the same time and being left with nothing is too great, we think.

Also, just to add, the purpose of the two assessments is completely different. One is about capability for work and one is about functional impairment and the additional costs that might be incurred as a result of that. Trying to do one assessment covering those two things is likely to be a much longer assessment and, in that sense, something that is more difficult for those people that are going through the assessment. We would caution against it.

The Green Paper itself seems to speak very strongly in the early chapters against a single assessment, yet we come to chapter 5 of the Green Paper and all of a sudden it is back on the table, albeit within a different benefits regime that is not specified at all. We would welcome the DWP reaching a conclusion on that quite quickly and one that decides not to go down that route under this benefits regime.

Q106       Chair: Thank you very much. Joanne, can I ask you specifically about the assessments for the Industrial Injuries Disablement Benefit? You have made the point that you have very good relationships with the Department. Those assessments are generally face-to-face. Of course, that meant they were suspended for some time during the pandemic. Generally, how well do the assessments work and do you think there ought to be a look at something other than a face-to-face assessment for the benefit?

Joanne Gordon: They did get suspended in the pandemic and they have gone to paper-based. We have found that has been very useful for a number of reasons. The previous panel talked about choice and we would obviously echo that, but certainly paper-based has been quite good for us. Very often people do not understand why they are going for a separate medical because they will say, “The evidence is there. I have been through my consultant. Why I am going to another assessment?” That is the first thing. Again, we are talking about elderly people who have to travel and it is a very stressful process for them. We have found that the paper-based medicals have been very useful.

The problem is obviously getting hospital records. We still have a number of outstanding IIDB claims where they cannot get the hospital records. There has to be some sort of process put in so that where the paper-based assessment breaks down there is still an option to go for a face-to-face medical. Yes, we have found generally that it has been very useful to have a paper-based assessment and I think people have preferred that. They do not have to go through the stress. They do not ring us up and say, “What is all this about?” Yes, we would argue for retaining that.

Q107       Chair: To the other panellists, lots of the assessment things changed during the pandemic for obvious reasons. Looking back on those changes, did any strike you as being very helpful things that ought to be kept after the pandemic? They were introduced just for the pandemic, but maybe there are some lessons there that are valuable for the longer term. I will start with Marc.

Marc Francis: Thank you, Chair. Yes, absolutely. You heard from earlier witnesses that the shift towards making decisions on papers plus medical evidence was a real positive. The suspension of face-to-face was a real positive, particularly for those people that were dreading having to go through that and they saw their time coming up for that. Although I should say that has only been a suspension in many, many cases and there is a very big backlog now of assessments that need to be carried out.

The introduction of phone assessments has been very positive for lots of our clients as well—not all, but lots of them—and video assessments. Although we have seen people sometimes being sent an invitation to a video assessment when they had not said that that is something that they wanted to do, which is a bit worrying and has been difficult to challenge.

If I can take a step beyond the assessment process, HMCTS has introduced remote appeal hearings at the first-tier tribunal and that has also been very positive for those people that want to go down that route. You heard from colleagues on the panel about the stress and anxiety of, first of all, having to wait for that tribunal, but then to step into that. That can be very difficult for people. Many of our clients get very anxious in the run-up to that and some to such an extent that they do not feel ultimately able to attend. I think that is one of the reasons why the number of people appealing has been reducing.

That change HMCTS introduced is potentially a very beneficial one. You can get more people into an appeal hearing and that is a real positive. Again, it has to be on the basis of their choice because some people want to have their time and feel that the best way to represent their case is in person, in the same way as some people will with the assessment itself.

Q108       Chair: Thank you, Marc. I think Joanna was wanting to comment on this as well.

Joanne Gordon: For Industrial Injuries Disablement Benefit purposes, for people who have mesothelioma and lung cancer, we have been able to sign the forms, similar to the way that Attendance Allowance for PIP is. This was negotiated with the Department for Work and Pensions and is called an easement. Whereas normally we would have to go out and get the forms signed, we can sign them for those two conditions. This is something very important going forward that ought to be retained. I will give you an—

Q109       Chair: That was just for the pandemic, wasn’t it? That was introduced for the pandemic?

Joanne Gordon: Yes. As far as I am aware, it was just introduced for the pandemic because we were saying how difficult it would be to get signatures from people who have to shield. We think it is very important to continue that. I will give you an example. Some years ago, a lung cancer nurse phoned me up and said, “This man is very ill. I do not think he is going to last the night out. I do not think there is anything you can do”. We did manage to get the forms signed. I had to speak to his wife, get them scanned over and she did manage to get him to sign, but the difficulty was having that conversation, taking her away from where she wanted to be, which was next to his bed, to fill in a form.

It is quite important that the form is signed in life because, as you will know, though the benefit can be backdated, the workers’ compensation scheme is different if somebody passes away. The amount of money is significantly reduced from in life to posthumous. That is another argument. We would like to see equalisation of those two benefits, but at the moment, if we could keep the easement that would certainly help in supporting people who are terminally ill going forward.

Q110       Chair: Thank you. Morgan or Helen, anything that has changed in the pandemic that you think ought to be kept? Morgan.

Morgan Vine: I completely agree with the other witnesses. Obviously, I am not here to speak about things like PIP. I understand that with those benefits, having to constantly go on a regular basis and reprove yourself in person is very challenging. I just want to caveat what I am about to say with that. With Attendance Allowance, it has been very challenging during the pandemic because of the face-to-face support that volunteers or advocates can provide to people when filling out the form. That has understandably reduced. It has not been safe. Particularly as people over 70 were at more risk from the virus, there has been a real halt in volunteers being allowed to go into people’s homes and charities like Independent Age have stopped in-home visits with volunteers and things like that.

What that means is it is even more important that the accompanying guidance gives good definitions and examples because it is more likely that somebody will be filling this form out by themselves, maybe by telephone, but often it will mean they are just doing it on their own. As I said earlier, we have also missed that ability for a volunteer to observe. As well as just take on face value what the person is saying, they struggle with, seeing and knowing they are not able to walk from room and room. It is, “I am going to put that into this form and let them know I am doing so”. We are missing that. I think for Attendance Allowance the pandemic has had a negative impact in that sense.

Q111       Chair: Thank you. Helen, do you want to say anything on this?

Helen Wild: I would agree with that. I think paper-based assessments and telephone assessments have been better. Visually you do not always get the full picture, but definitely for the stress side of things telephone assessments have been a lot better for our members, yes.

Q112       Dr Ben Spencer: My questions are around the appeals process, how that can be improved and how DWP responds to feedback. I was quite struck by your opening remarks, Marc, where you were talking about the high rate of success that you have in terms of when you go through the appeal process now. I appreciate that is what you specialise in and people come to you for that, but what are your reflections on how the system works, how it is helping or failing people going through it?

Marc Francis: We have gained experience over the last five or six years in this. I should say that 10 years ago we did virtually no disability benefit appeals or challenges. It was just not an area that we were involved in and I think probably we did not need to be involved in either.

Our experience of the appeals process: I talked about the rates of overturns that there are at the moment. The last full year for which figures are available was that around three-quarters of decisions were overturned at the appeal stage or, sorry, I should say as a result of a decision by the tribunal. It is very important to bear that in mind because DWP has been arguing in the last six months or so that appeal rates have been falling and it has been crediting its own improved performance at mandatory reconsideration as the driver for that. We recognise the improvement in MR, but we do not see a significant improvement in the quality of initial decision-making and that is where there is still such a high rate of appeals.

I want to draw the Committee’s attention to the evidence that DWP submitted. The most recent figures that it produced were that two-thirds of appeals are won by the appellant and one-third are upheld by the tribunal. In actual fact, the figures for the last full year are around 7,500 were won by the appellant and 3,500 or so were upheld in DWP’s favour. What it does not mention is that over 10,000 appeals that were lodged were lapsed by DWP in advance of the tribunal hearing. That is post the mandatory reconsideration stage, so in actual fact DWP lost 83% of appeals that were lodged in that year.

We believe that is the performance of the organisation and that is why we see such a high rate of success for our own team, who are expert advisers, but also volunteers and pro bono lawyers that do not have experience in social security and many other organisations have similarly high rates. There is a real problem with the quality of initial decision-making. There are some things that could be brought from within the appeal stage and in fact the mandatory reconsideration stage at an earlier part of the whole process, particularly listening to what people are telling them, not just tick-boxes against the descriptors that you were told about earlier, but also engaging with the evidence that is put in front of them by medical professionals involved in people’s care.

The Committee recommended a couple of years ago that where the assessor disagrees with the recommendation or with advice from a medical professional that they should justify that. We strongly support that, but DWP rejects that out of hand. That was two years ago. It is something that has been on the table long before. It is something that we think would drive up the quality of initial decision-making by DWP’s initial decision-makers.

Q113       Dr Ben Spencer: Lots of things have come up in your answer and I am mindful of time, so I am going to have to focus a bit. I hear what you are saying about the initial assessments, but if the MR process is resolving most of that—and certainly that is what the Minister has said to us, getting MR better and trying to prevent it even going to that stage while trying to get maximum status or whatever—you could see that as part of the broader scope of the initial assessment in the first place and the MR as a sort of fine-tuning process. I appreciate that does not stop the grief to the person who is subject to the assessment when they get a letter back, but what is your take on that?

Marc Francis: As I say, there has been a genuine improvement in mandatory reconsideration. We met when Amber Rudd was still the Secretary of State. She helped to arrange a meeting to discuss the problems with MR that we had identified, had argued about in our research report and our clients were mentioning. We were quite persuaded by some of the work that was being undertaken by those officials, not just in relation to disability benefits but other benefits as well. There was a lot of thought that went into that and there has clearly been improvement, particularly the engagement with medical evidence and the willingness to phone up a claimant and talk through their claim in more detail as well. Those are very positive things.

Just to mention the figures again, on PIP alone there were over 100,000 MRs and it resulted in 38% of cases having a change of award. That is very positive, but I mentioned earlier in the same year DWP lost 83% of the appeals that were lodged. Those were appeals that had all been through a mandatory reconsideration stage. 41,000 people did an MR, but did not then go on to appeal, and we believe that there are many people out there that would win an appeal but they think that MR is their appeal. They see that as the end of the process, even if it is explained to them in letters that it is not.

We want DWP to look again at some of those cases to see how many of those cases continued to be wrong, having gone through the initial assessment, gone through the initial decision, had an MR and then they have kind of ended at that stage. What is the level of incorrect decision-making that is still going on within DWP? That is very important. I think that your predecessor Committee talked about sampling MRs and sampling initial decisions and we would encourage a further recommendation on that.

Q114       Dr Ben Spencer: Having brought these cases through tribunal, how much at the tribunal stage are decisions being altered based on new evidence that comes or based on a different interpretation of what one might call the facts of the case by the tribunal? What is your take on that?

Marc Francis: Again, looking at DWP’s evidence, it talks again about it being new evidence that is presented at the tribunal. That really isn’t the case, not just in our experience but in DWP’s own actual evidence base for that. It says 75% of decisions that are overturned are because of new evidence coming forward.

We have mentioned in this Committee before—in fact, Mr Coyle had a parliamentary question a few years ago—that of that 75%, 9% was new written evidence and 66% was cogent oral evidence from the claimant themselves. That could clearly have been obtained during the course of an assessment or during a follow-up conversation by the initial decision-maker or by the MR decision-maker. We do not really buy DWP’s claim that this is new evidence coming forward. This is evidence that is generally available if you are willing to probe and then listen to what people say when they answer.

Q115       Dr Ben Spencer: It comes back essentially to the assessment process. I hear what you say about challenging decisions and getting more evidence, but I think that has always been the problem with this process in terms of: you have the claimant’s own condition separate to the assessment of the DWP with different priorities, different time pressures and different frames of reference in terms of what they do.

Marc Francis: It is a question of weighting, because the assessment report is given overriding predominance in the decision, at least at the initial decision-making stage. I think there is a bit of a recognition within the Green Paper that there needs to be much more engagement with the wider medical evidence that is submitted. In fact, not just medical evidence, but evidence from family members or other people, professionals maybe, that were involved in someone’s care as well.

Yes, it is about getting a balance between those two things. If that could be done at an earlier stage, you would see an improvement in the quality of initial decision-making. Presumably, you would then be able to focus MRs on those decisions that are much more borderline. Whereas it feels now that both MR and appeals have to do so much of the heavy lifting around the overall number of claims and they are not focusing so much on those grey area decisions that will be inevitable in any kind of system like this.

Q116       Dr Ben Spencer: I am mindful of time, but I could talk about this for ages. I do think there is a challenge when you have the claimant’s individual clinician, where it is part of their job in a sense, but it is an additional piece of work for them to do in among other things. If they are going to get into an argument with the assessor, because the assessor has to disprove the medic’s assessment, what is the next step? It will be asking for more information from the medic and, as we know, given the patient/doctor relationship and duty of care, there is always going to be a tendency for doctors to give one perspective that is more in their patient’s favour. You would not expect any different. I think there is always going to be that tension in terms of a good, qualified assessor who is going to be able to take that broad scope. Also, how are you going to find people and sufficiently pay them to do that? You are looking at quite a high expert level in very difficult cases.

Marc Francis: I would come back to the point about weighting between the assessment report and the medical evidence and about there being a balance in between those two things, but alsoto the point that was mentioned earlierabout the level of expertise of the people undertaking the assessment. You have heard from witnesses previously, and there has been much evidence over the years, about the lack of knowledge and understanding of people’s disability and condition by those people undertaking the assessment. That is something that has not been addressed over a period of many years.

We strongly support the recommendation that was made earlier about the way that people are not just upskilled, but that they are brought to a position where they have a genuine understanding of people’s disabilities or condition when they are producing those reports. Otherwise, they cannot produce an assessment report that is meaningful and speaks to someone’s capability for work or functional impairment.

Q117       Dr Ben Spencer: How much would it cost to get that requisite level of skill? It just strikes me that it sounds like a great and right thing to do. In my previous life as a consultant psychiatrist, if I wrote something about my patient and then had an assessor challenge it, I would say, “Where is your background?” I am sure quite a lot of them have very good skillsets and I am certainly no expert on that sort of expertise around how disability affects people’s lives with regards to these assessments. That being said, have you costed what that would look like in terms of getting people trained up to that sort of level?

Marc Francis: No, we have not costed that. I think you heard earlier that there is a pool of people that undertake assessments and that much more could be done to ensure that those people that are conducting an individual’s assessment are aligned or have a good understanding of that disability or condition.

The other thing that I would add is that, if DWP itself is to undertake that sort of cost-benefit analysis, the things that need to be included in that are the costs of the whole MR process and the costs of the appeals process as well, because that is not cheap. It is cheap to the state, in part because it does not provide any support to us or our client when we are making that challenge. That is all done with the support of trusts and foundations in London, with the support of voluntary donations, with volunteers and pro bono support, but it is still quite an expensive process. In fact, I think DWP is surcharged for the number of PIP cases that it is losing at appeal each year, so all of that needs to be brought into the mix too.

Q118       Dr Ben Spencer: It would be very interesting to know if it took the person’s medical evidence at face value, whether that would end up saving money as a whole because of cutting short that process, even with all the biases I just mentioned. Anyway, I will stop there. Chair, with your leave, does anyone on the Zoom call want to make any points? I am conscious of time. Joanne.

Joanne Gordon: I want to make a few regarding mandatory reconsideration. From our point of view, there are two parts to the Industrial Injuries Disablement Benefit. One relates to prescription and we think that mandatory reconsideration works well with prescription, but not when it comes to medicals. Generally, a month isn’t a long enough time if we want to get extra evidence in and then it just becomes a sort of tick-box for mandatory reconsideration. We can send in additional evidence from doctors or consultants or from the legal claim, but if it is past the mandatory reconsideration month they just say it is going to the tribunal. They have a power to relook at things, but that is not happening. That would save money, if they would relook at things rather than just saying mandatory reconsideration is done.

The other thing that we have found when we get to the tribunal, is very often it is adjourned because evidence isn’t there. Evidence has had to be provided for the original decision, but then we do not know where it is sent to. It is not sent back to the Department for Work and Pensions because when we get to the tribunal service, the evidence that it has made the decisions on, all the medical papers are not there. It is asking claimants themselves to try to get a disc of their medical records, so we have to try to do that in advance. This is all costly, having to adjourn tribunals and not having evidence there, and even having to go to a tribunal when it could have looked at the medical evidence before it gets to that.

Then there are all the problems with the delays. We have tribunals that are probably about three years old, maybe four years old. Again, that is not good for the claimant either. We think that there are processes that could be put in place to stop the need to go to tribunals for appeals.

Chair: Thank you all very much. That concludes our questions to you. Thank you all very much for being willing to join us this morning and for the very helpful information you have given us. There are lots of things for us to reflect on as we move towards making some recommendations, but that finishes the meeting today.