Written evidence from the MS Society (HAB0059)

About the MS Society

The MS Society is the UK’s largest charity for people living with multiple sclerosis (MS). We’re here for everyone living with MS – to provide practical help today, and the hope of a cure tomorrow. We play a leading role in research. We fight for better treatment and care. We let people with MS know they’re not alone, and offer advice and support to help them.

About MS

MS is both a progressive and fluctuating condition making life unpredictable. It can be relentless, painful and exhausting and symptoms can include loss of balance, spasms, speech problems and fatigue. People with MS are recognised as disabled under the Equality Act 2010. MS affects three times as many women than men. Most people are diagnosed between the ages of 20 and 50, at pivotal times in their professional and personal lives.

Summary of response

The MS Society has been campaigning for a better welfare system for people with MS for many years. We welcome the opportunity to respond to this inquiry, at a time when many disabled people need more support than ever before.

Below we summarise our recommendations for what the UK Government should do to improve the health assessments for people with MS. These are outlined in more detail throughout this response.

        People with MS should only be assessed by someone who has some professional experience of neurological conditions and has received training developed with relevant charities.
 

        Evidence collection processes should be improved to ensure that all disabled people are able to easily provide relevant evidence for their claim and evidence is actually collected by assessors.
 

        Claimants should only go through a non-paper-based type of assessment in situations where insufficient evidence has been provided and/or collected to enable a ‘paper-based’ decision to be made. If a claimant would still prefer to be assessed face-to-face, by phone or video, or where there is not enough evidence for a ‘paper-based’ decision to be made, the claimant should be given full choice over their type of assessment. To enable claimants to make informed choices, they should be provided with clear advice, via a range of channels, setting out things they need to consider before deciding which type of assessment is right for them.
 

        Staff working for, and on behalf of, the Department for Work and Pensions (DWP) should treat all disabled people with empathy, dignity and respect at all times. Disabled people should be believed and not assumed to be lying about their condition and it should always be accepted that disabled people are the experts in their condition and how it affects them. These standards should be strictly enforced and embedded across all DWP services.
 

        PIP and WCA assessment criteria should be changed to ensure they more effectively consider the fluctuating nature of MS and hidden symptoms. The reliably, repeatedly, safely criteria and their definitions should be embedded within the wording of each PIP and WCA descriptor. Informal observations should also no longer play any role in the PIP assessment or WCA. The 20-metre rule should be scrapped and an appropriate alternative should be developed. The 50-metre threshold should be reinstated in the meantime.
 

        Evidence of clinicians and healthcare professionals should be given more weight than it currently is, and in appropriate cases the input of a clinician should be enough to make a decision.
 

        Forms should be changed so they can allow people with progressive and fluctuating conditions to fully explain how their condition affects them. The deadline to submit PIP and ESA application forms should be extended to 8 weeks and clear information should be provided with forms telling people how they can request an extension.
 

        ESA and PIP should be maintained as separate benefits with separate assessments. PIP should be kept as a non-means-tested benefit, and no employability element is introduced to it.
 

        Assessments should be brought back in-house.
 

        Claimants should be made aware they can have someone to support them during the call and be given enough notice so they can prepare for the call and arrange for someone to support them. If support is not available people must have the option to move the appointment without it counting towards the limited number of changes. Assessments must be carried out at the time agreed, and if support is unavailable because the call is too early or late, it should be rescheduled, and not count towards the limit.
 

        In situations where claimants are unhappy with their initial decision, and where they thought the assessment type played a role in this incorrect decision, they should be offered the option of being assessed via a different method to their initial assessment before being required to submit a mandatory reconsideration.
 

        All claimants should be provided with information outlining other benefits and support they may be eligible for, including advice on how to apply. Benefit letters should provide clear information on rights to Mandatory Reconsiderations and Appeals.
 

        UK Government should work with advocacy organisations to identify and map gaps in advocacy provision, and properly fund these organisations to provide additional services or extend their current services to fill these gaps. Advocacy services should be widely publicised via a range of channels to disabled people, including people with MS.
 

        Policy in relation to benefit rates should be informed by research on minimum income standards. Rates should be set at a level that lifts all disabled people out of poverty and enables them to cover their extra costs and live independently.
 

        To develop policy and monitor concerns related to disability benefits, the DWP should do everything it can to ensure engagement with disabled people and disability organisations is as effective as it can be, and is not just seen as a box-ticking exercise.

1. How could DWP improve the quality of assessments for health-related benefits?

People with MS have repeatedly raised concerns with us that they have been assessed by people who have no knowledge of MS, let alone any expertise in MS or any neurological conditions. This has resulted in far too many people with MS being poorly assessed and missing out on the support they need and are entitled to. We do not accept the DWP’s excuse that people are not assessed by experts because it is logistically difficult. If the Government wanted to, it could provide adequate funding and take the necessary steps to ensure that everyone with MS can be assessed by someone who has some professional experience of neurological conditions and has received training developed with relevant charities. The DWP should make this happen as soon as possible.

The DWP must improve evidence collection processes to ensure that all disabled people are able to easily provide relevant evidence for their claim and evidence is actually collected by assessors. The DWP should pay for charges made by healthcare professionals for providing evidence to claimants and guidance should be provided to all claimants and healthcare professionals on the type of evidence they should provide. The DWP should ensure that evidence is always requested by assessors when assessing claims by people with MS and should work with assessment providers and healthcare professionals to achieve a significant increase in evidence return rates.

Far too many people with MS are still required to go through face-to-face, phone and video assessments when there is more than enough evidence available for a correct decision to be made on their claim before this. These assessments are completely unnecessary, often cause people a great deal of stress and often lead to people not getting the support they are entitled to due to poor practice by assessors. The DWP needs to ensure that claimants are only asked to go through a non-paper-based type of assessment in situations where insufficient evidence has been provided and/or collected to enable a ‘paper-based’ decision to be made.

We have also repeatedly heard shocking stories of people with MS being treated like liars and frauds by DWP staff and being made to feel as if they are worthless and small. This is completely unacceptable and the DWP must ensure that staff working for, and on behalf of, the Department treat all disabled people with empathy, dignity and respect at all times. Disabled people should be believed and not assumed to be lying about their condition. It should always be accepted that disabled people are the experts in their condition and how it affects them. These standards should be strictly enforced and embedded across all DWP services. Any assessment provider that fails to meet them should lose their contract and appropriate action should be taken against individual staff who fail to meet them.

1a. Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments in 2018?

Reading the recommendations in the Committee’s report from 2018, as well as our own submission to the Committee’s inquiry, it’s clear to see that very little has changed between now and then. Since 2018 we have had another Green Paper – ‘Shaping Future Support: the Health and Disability Green Paper’ (which we will refer to as the 2021 Green Paper in the rest of the document) following on from the 2016 Green Paper ‘Work, Health and Disability: improving lives’ (which we will refer to as the 2016 Green Paper in the rest of the document). The fact that many of the proposals in the 2021 Green Paper are similar to those in the 2016 Green Paper highlights the little amount of progress that has been made in that time.

There have however, been some improvements since the Committee’s last report. These include:

     The introduction of phone (and video) assessments. This had been proposed and discussed for a while prior to the Covid-19 pandemic, however the pandemic forced the Department’s hand to implement and deliver these at a much faster rate than intended. Being able to have an assessment over the phone or via video has its positives. People don’t have to travel to an assessment centre which can be challenging for many. However, anything rolled out at pace, will of course have its problems. These include a lack of training on how to carry out a phone assessment instead of a face to face assessment, claimants not having access to the right support at the time of the phone call, and calls not being carried out at the agreed time. There still needs to be a decision made on how the type of assessment someone has will be determined, as well as an evaluation of the impact the type of assessment you have has on the outcome of your award. We also know that many people with MS have experienced the same challenges with phone and video assessments as they have with face to face assessments. Please see our response to Q10 for more details.

     The introduction of a 10-year light-touch review. Linked to the Department’s focus on reducing repeat assessments which appears to remain a priority area for improvement in the 2021 Green Paper, the introduction of a 10 year light-touch review has, in principle, been welcomed. There was an overwhelming sense from people with MS we’ve spoken to that they couldn’t comprehend why anyone with MS would have to go through a repeat assessment when they knew, and their healthcare professionals knew, they would not get better. The UK MS Nurses Association (UKMSNA) told us that “continuous insensitive assessments on people with deteriorating conditions or whose health status is not likely to change, is a wasteful use of resources. It has a detrimental effect on the individual’s health and wellbeing.” Unfortunately there is currently little information on what a light-touch review will look like, despite reassurances that the process and guidance would be developed well in advance of the first reviews taking place, and with the involvement of stakeholders. Despite the introduction of these awards it’s incredibly disappointing that the number of people with MS receiving an ongoing PIP award is very low. Recent DWP data shows that there are currently 55,694 people claiming PIP with MS as their main condition and the vast majority of them have an award period of less than 5 years (78%)[1].

     The Health Transformation Programme and Health Transformation Area. The Department has been working with stakeholders for over two years on the development of the Health Transformation Programme, and while this is not fully rolled-out yet, we welcome progress being made in this area with the introduction of the Health Transformation Area and its expansion into new postcodes. It is still in a test and learn stage and we look forward to seeing how the service develops as it is tested and adapted in response to evidence.

     Holistic decision making. In 2019, the Department started to adopt a holistic approach to decision making. Initially introduced on PIP at the Mandatory Reconsideration (MR) stage. It allows staff to take extra time, if needed, to make a decision on benefit entitlement following a health assessment. This extra time has often allowed more evidence to be provided to support the decision making process. Since this new approach was introduced, the DWP says that the percentage of PIP decisions that were changed at the MR stage has nearly doubled. There has also been a decrease in the percentage of appeals lodged following an MR. Holistic decision making has since been introduced at MR for ESA and UC and they are now expanding it to making the first decision about entitlement following a health assessment for ESA, PIP and UC. We welcome that the DWP are now starting to use this process, getting the decision right the first time is essential. But the fact that decisions changed at the MR stage has nearly doubled, shows there is widespread failure at the start of the application process and it’s disappointing that it’s taken so long to begin to address this.

     Improving the appeal lapsing process. If new evidence or information becomes available after an appeal has been lodged, but before it is heard at a tribunal, the DWP are able to change a decision and increase the award where appropriate, known as lapsing an appeal. We cautiously welcome the DWP’s intention to improve appeal lapsing to ensure that more people can get the correct decision before having to go to appeal. However, we are very concerned by reports of disabled people, including people with MS, being called by the DWP being pressured into accepting a benefit award lower than what they may be entitled to. It also points to the larger problem, as highlighted above, that the failure to get the right decision first time needs to be urgently addressed.

There are proposals in the 2021 Green Paper that align with the Committee’s recommendations, as well as our own. The fact that these proposals are only now being discussed and presented demonstrate the disappointingly slow progress made since 2018. Many of the fundamental problems with assessments for PIP, ESA and UC remain unchanged, including a deep lack of trust amongst claimants, repeated calls for specialist assessors and reports provided automatically, scrapping the 20m rule, and issues with assessing fluctuating conditions using informal observations.

2. Are there any international examples of good practice that the Department could draw on to improve the application and assessment processes for health-related benefits?

Rather than looking to international examples of good practice, we think it would be more productive for the DWP to consider the specific recommendations we have outlined throughout this paper for how these processes could be improved for people with MS.

3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?

The PIP descriptors are too rigid and arbitrary for assessing the impact of the hidden symptoms and the fluctuating nature of MS and we know that too often assessors make informal observations to assess whether someone can perform an activity reliably, repeatedly and in a timely manner. This is clear for the 20-metre rule for assessing mobility. This rule has had a devastating impact on people with MS, leading to thousands losing their higher rate of mobility support which is a lifeline to an independent life for so many.

It is also illogical to currently deny support to people with MS who use assistive technology to make their life easier. We do not believe that the use of this technology makes the level of required support lower. On the contrary, the higher level of support is required in order to purchase and maintain assistive technology, and the need to use assistive technology also points to a higher level of expenses.

To ensure the PIP descriptors can work for people with MS, the DWP should:

              Scrap the 20-metre rule and undertake a review and design exercise to come up with an appropriate alternative. In the meantime, the 50-metre threshold should be reinstated.

              Change the criteria to ensure they more effectively consider the fluctuating nature of MS and hidden symptoms.

              Embed the reliably, repeatedly, safely criteria and their definitions within the wording of each descriptor.

              Ensure that informal observations no longer play a role in PIP assessments.

              Remove the ‘aided’ definition from the criteria for the PIP assessment.

4. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?

The main issues with the WCA descriptors are effectively the same as those outlined in the section above on PIP assessments. Too often the WCA results in people with MS missing out on the right level of support when they are unable to work. The descriptors do not allow for the fluctuating nature of MS and hidden symptoms to be adequately taken into account, including how these affect people’s ability to work. Too often, assessors fail to consider whether people can do activities reliably, repeatedly and in a timely manner and assess people’s ability to do these activities by inappropriate informal observations.

To ensure the WCA descriptors can work for people with MS, the DWP should:

              Change the criteria to ensure they more effectively consider the fluctuating nature of MS and hidden symptoms.

              Embed the reliably, repeatedly, safely criteria and their definitions within the wording of each descriptor.

              Ensure that informal observations no longer play a role in the WCA.

5a. Before PIP replaced DLA assessment was paper-based, what are the benefits and drawbacks of such an approach?

Driving much of the 2021 Green Paper’s proposals around assessments shows a desire to increase the number of paper-based decisions. This can be seen in proposals around different methods of assessments, the focus on evidence gathering and holistic decision making, reducing repeat assessments, and the introduction of a Severe Disability Group. All of which could lead to more paper-based decisions and we welcome this.

Far too many people with MS are still required to go through a face to face assessment when there is more than enough evidence available for a correct decision to be made on their claim before this. These can cause a great deal of stress, but also lead to people not getting the support they are entitled to because of poor practice by assessors. The DWP needs to ensure that claimants are only asked to go through a non-paper-based assessment in situations where insufficient evidence has been provided and/or obtained to enable a paper-based decision. Everything must be done to get this evidence before another method of assessment is recommended. However, all claimants should have the choice to go through other methods of assessment should they wish.

Unfortunately, we know that evidence collection processes fall far short of an acceptable standard. The DWP’s commitment to increase the number of paper-based decisions which work for disabled people can only be realised if these processes are greatly improved. We have spoken to people with MS who can’t understand why they have to have an assessment when their neurologist has told them the information – “They’ve told them I have an MS, and that I won’t get better. That’s fact. Surely that’s enough.” The proposal of a Severe Disability Group, which would involve no assessment in place of a clinician’s recommendation shows that evidence from someone’s healthcare professional can and should be trusted. This is also relevant to question 6.

People with MS tell us that face to face assessments can lead to a worsening of their symptoms, as well as stress and anxiety. Paper-based decisions will help mitigate this, as well as save people from having to travel to face to face assessments, and the Department having to provide them, thus reducing cost for both individuals and the Department.

Paper-based decisions would also shorten the process, which can only be a good thing when waiting times are so long. People are having to wait too long to get the financial support they need. More paper-based decisions could help to reduce waiting times.

They could also improve trust amongst claimants. People with MS often tell us how they are made to feel like they’re liars, having to repeat the same information, proving that they have MS and that they need support, are entitled to support. “DLA was – you say you have this condition, how can we help you? PIP is predicated on – you say you have this condition, now you need to prove it, and then you need to prove it again and again to prove you are worth of assistance.” A paper-based decision would show that people are believed first time round.

6. How practical would it be for DWP decision makers to rely on clinician input, without a separate assessment to make decisions on benefit entitlement? What are the benefits and drawbacks of such an approach?

The current SRTI process works in this way – where if a clinician fits the criteria they can submit a medical form which, if successful, enables claimants to receive an award without them having to have an assessment. The 2021 Green Paper proposes a new Severe Disability Group, which seems to follow a similar process, although there is very little detail on this currently, other than what we’ve learnt from discussions we’ve been invited to by the Department.

We believe that for many people with MS this approach would be beneficial. MS is a progressive condition which is unlikely to get better (as stated above) if a clinician can state this fact what more is required? People with MS tell us they find it difficult to understand why this is not enough. “Believe the reports of GPs, Consultants, Carers etc. who know the person and their problems. I have felt humiliated, mistreated, judged, looked down upon, misunderstood and terrified by the assessment process. Doctors and carers know their patients/clients and have all the information about them to hand, it would be far more straightforward and less costly to use this information and certainly far less stressful for the claimant.”

We can learn from the SRTI process on what some of the drawbacks of this approach could be. This includes health professionals’ interpretations of the criteria for the SRTI process (and in future the same could be said regarding an SDG process). Access to this ‘fast-track’ process could be dependent on the attitude and interpretation of their clinician. They could be influenced by their previous experience, all of which could lead to inconsistency, and inequity of access.

It could also be a challenge managing the expectation of the claimant. If they disagree with the clinician (perhaps they don’t want to submit the form) or if they blame them for being unsuccessful in their claim. This could damage the relationship between a clinician and patient.

This approach could put additional demands on a health service which is already facing a lot of pressure. That said, we know that clinicians, in particular MS Nurses, tell us they spend a lot of time supporting people through the application process and providing evidence, so it could have a positive impact. It’s important that healthcare professionals aren’t wasting their time and that the evidence they provide is not just of high quality, but that it is believed and not questioned by assessment providers and decision makers who are not qualified to challenge the judgement of a specialist health professional who has experience and expertise.

Overall if done well, despite the drawbacks, the MS Society would like to see the evidence of clinicians and healthcare professionals given more weighting than it currently is, and in appropriate cases e.g. progressive conditions like MS which are unlikely to improve, the input of a clinician should be enough, reducing the need for a separate assessment.

7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?

As we have outlined elsewhere in this paper, poor practice by assessors, flawed assessment criteria and ineffective evidence collection processes are just a few of the reasons why far too many people with MS fail to get the support they are entitled to first time, and are forced to go through an appeals process to get it.

Tribunals sometimes make the wrong decision and are not immune from similar poor practice to that seen in assessments including lines of questioning which make disabled people feel anxious and stressed. However, we believe that tribunals are more effective than assessments in making the right decision and this is likely in part due to who sits on the panel. Tribunal hearings are heard by a legally qualified judge and up to two other independent people, including a doctor and sometimes a disability expert. This is in contrast to initial assessments which are undertaken by a single assessor, working for a private provider on behalf of the DWP, who is not a doctor and who usually does not have any expertise in the condition of the person being assessed.

Going through an appeals process can be incredibly stressful for many people with MS and cause their symptoms to get worse. Not only that, but the Government is also spending hundreds of thousands of pounds of taxpayers’ money fighting appeals which are overwhelmingly found in favour of claimants. With this in mind, the Government should do everything it can to prioritise ensuring that all disabled people get the right decision first time.

7a. What could the DWP change earlier in the process to ensure that fewer cases go to appeal?

The DWP should ensure that assessors make every effort to gather reliable evidence as early as possible in the process to ensure that as many people as possible get the right decision first time, ideally through a ‘paper-based’ assessment. Unfortunately, many people with MS have told us that evidence collection processes are well below an acceptable standard and lead to too many people not getting the right support first time. This then leads to too many people having to go through unnecessary assessments, mandatory reconsiderations and appeals. The DWP should follow our recommendations for improving evidence collection processes, as outlined in our answer to question 1.

The DWP also needs to go further with the changes that are currently underway to redesign forms. Forms should be changed so they can allow people with progressive and fluctuating conditions to fully explain how their condition affects them. The deadline to submit PIP and ESA application forms should be extended to 8 weeks and clear information should be provided with forms telling people how they can request an extension.

8. Is there a case for combining the assessment processes for different benefits? If not, how else could the Department streamline the application processes for people claiming more than one benefit (eg. PIP and ESA)?

We are strongly opposed to PIP and ESA being combined into a single benefit. This could lead to PIP becoming means-tested, which would mean that someone could lose all their financial support subject to one inaccurate assessment. The DWP should ensure that, in the future, ESA and PIP are maintained as separate benefits with separate assessments. It is imperative that PIP is kept as a non-means-tested benefit, and that no employability element is introduced to PIP.

To help streamline the application process for people claiming more than one benefit, the DWP should follow our recommendations in our answers to questions 1, 6, 7a, 10, 10a, 12 and 12a.

9. What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?

We welcome the DWP’s plans to roll out an integrated assessment service through the Health Transformation Programme. However, people with MS have previously told us they have significant concerns about the DWP having access to personal information. Therefore, the DWP should not use information from other government sources such as the NHS and local authorities without the explicit consent of the individual concerned. Claimants should also always be asked if they want evidence held by the DWP to be used to inform other claims for financial support.

We also know that some people with MS face barriers to accessing digital services and so it is essential the DWP puts in place measures to ensure people who face these barriers are not put at a disadvantage when an integrated digital service is rolled out.

The DWP should also ensure both audio and video recordings of assessments are provided as an option to claimants, regardless of whether they were assessed face-to-face, by phone or video, and claimants should be informed of this option ahead of their assessment.

We have discussed the Health Transformation Programme and the Health Transformation Area in response to other questions where it is also relevant.

9b. What would the benefits and drawbacks of DWP bringing assessments in house, rather than contracting them to external organisations? In particular, would this help improve trust in the process?

There are many problems with the assessment process directly linked to how they are delivered by the Assessment Providers. These include the accuracy of the assessment process, the inaccuracy of assessor reports, the assessor’s lack of knowledge of MS, and the persistently high number of Mandatory Reconsiderations and Appeals. MS Society surveys have consistently highlighted dissatisfaction with the inaccuracy of the process as well as the inaccuracy of assessor reports. People with MS have repeatedly told us that their assessor did not understand the impact of their MS, or that their assessor had a good understanding of MS. This is also supported by a number of bodies such as the Committee itself, the Public Accounts Committee and the National Audit Office.

It’s a fair assumption to make that bringing assessments in-house will make a difference and improve these issues. Both the Scottish Government and the Northern Ireland Executive are in agreement – Scotland have said they believe bringing the system in house will help with standards and quality. The Government’s intentions behind the Health Transformation Programme and the Health Transformation area show that bringing assessments in-house is also being considered in the future for England and Wales.

Bringing the process back under the direct control of the DWP will undoubtedly have its benefits. We know that despite audits and performance measures being in place within the contracts between the DWP and the assessment providers, they are rarely met. (It is difficult to find up to date figures.) Those undertaking the assessment will be directly accountable to the DWP, enabling changes and improvements to happen quickly. Feedback from tribunals to assessment providers, to help them identify where issues may be, and how these can be improved, is often non-existent. An in-house assessment would allow for a more effective feedback loop. There is inconsistent training and sharing of good practice, however we have to acknowledge there has been an effort to improve this in recent years.

There are many in the sector that strongly believe bringing assessments in-house is the right thing to do and must be done as soon as possible. It is our belief that this is likely the best course of action, morally and logically. We continue to closely monitor the introduction of the Health Transformation Programme and Health Transformation Area to see how this develops.

The next section covers the following questions:

10 - What lessons should the Department learn from the way that it handled claims for health-related benefit claims during the pandemic: for example, relying to a greater extent on paper-based assessments, or using remote/telephone assessments?

10a - Is there a case for making some of the changes permanent?

We know many people with MS have experienced the same challenges with phone and video assessments as they have with face-to-face assessments. In our response to question 1 we outline what needs to be improved about assessments more generally to ensure they work for people with MS, including how assessors need to improve. We believe the DWP should continue to undertake paper-based, phone and video assessments, however the Department should follow our recommendations below to ensure these assessment types work for people with MS.

The DWP should ensure that claimants are only asked to go through any non-paper-based type of assessment in situations where insufficient reliable evidence has been provided and/or collected to enable a ‘paper-based’ decision to be made. If a claimant would still prefer to be assessed face-to-face, by phone or video, or where there is not enough evidence for a ‘paper-based’ decision to be made, the claimant should be given full choice over their type of assessment. The assessor should also seek the claimant’s MS specialist medical professional’s opinion on which type of assessment they think is most suitable for the claimant’s needs. If this opinion differs from the claimant’s choice, the claimant should be informed of their specialist’s view and asked if they would like to change their choice. To enable claimants to make informed choices, it should provide them with clear and in-depth guidance - developed in conjunction with MS experts - which sets out things a claimant needs to consider before deciding which type of assessment is right for them. Case managers should be fully trained to understand which types of assessments are more suited to certain needs and to provide advice to claimants to help them decide the type of assessment to best suit their needs.

We are concerned that some assessors do not receive effective enough training for conducting phone and video assessments. The DWP should ensure all assessors receive in-depth training to help them carry out all types of assessments including to help them understand the specific differences between the different types of assessment for assessing mobility and understanding when the claimant is getting support from someone else. Assessment providers should work with people with MS, and the MS Society to help shape their training.

Some people with MS who need support to take part in phone and video assessments do not always receive effective enough support to help them do so, some were not aware they could have someone supporting them during the assessment, and some thought they were not given enough time to adequately prepare. The DWP should ensure people are made aware they can have someone to support them during the call and are given enough notice so they can prepare for the call and arrange for someone to support them. If support is not available people must have the option to move the appointment without it counting towards the limited number of changes. Phone and video assessments must be carried out at the time agreed, and if support is unavailable because the call is too early or late, it should be rescheduled, and not count towards the limit.

In situations where claimants are unhappy with their initial decision, and where they thought the assessment type played a role in this incorrect decision, the DWP should offer them the option of being assessed via a different method to their initial assessment before being required to submit a mandatory reconsideration.

The next section covers the following questions:

12 - DWP believes that applications for some benefits dropped sharply at the start of the pandemic because claimants weren’t able to access support (for example, from third sector organisations) to complete their applications. What are the implications of this for how the Department ensures people are able to access health-related benefits consistently?

12a - How can the Department best help the third sector to support claimants in their applications?

It is unclear why applications for some benefits dropped sharply at the start of the pandemic. We agree with the Department that a lack of access to support will have played a part, but it’s likely this is not the whole picture. The DWP needs to explore in more detail to understand why people were not claiming the benefits they were entitled to at a time when extra financial support would have been needed.

People with MS have made it clear to us that the signposting, information and advice provided by the DWP in person, online and in forms is inadequate for helping them to access benefits and other support. To remedy this, the DWP should provide information on all support available to disabled people who are applying for benefits. This should include information on other benefits, as well as wider support for example, housing, and social care. Every person who initiates a claim for disability benefits should be given the right to be assigned a single point of contact to help them navigate the whole process and beyond. The DWP should also ensure benefit letters provide clear information on rights to Mandatory Reconsiderations and Appeals.

Many people with MS rely on advocacy support, including from the third sector, to help them more easily access the benefits and support they are entitled to. Unfortunately, advocacy services have been hit hard by funding cuts over recent years meaning they often struggle to provide support to all those who need it. The Government should work with advocacy organisations to identify and map gaps in provision, and properly fund these organisations to provide additional services or extend their current services to fill these gaps. By supporting organisations that are already more trusted by people who need support, it is likely the Government can go some way to achieving its stated aim of building trust with disabled people.

We also know there is limited awareness about independent advocacy amongst disabled people which means that people may access advocacy late or not at all. The DWP should ensure all relevant advocacy services are widely publicised via a range of channels to disabled people, including people with MS.

13. DWP recently published research on the impact of applying – what would be the best way of addressing this?

We welcome that the DWP are taking steps to improve forms, including the examples given in the 2021 Green Paper of how the PIP form will be improved. However, overall, the information provided on improvements to forms is limited. There are a number of steps the DWP should take to improve forms which are not mentioned.

Our previous research has shown around a third of people with MS thought four weeks was not enough time to complete the PIP form – something the DWP’s own research also found. Over half these people were unaware that it is possible to request a two week extension in some cases. The majority of people said they would have asked for this extension had they known. The DWP should extend the deadline to submit both PIP and ESA application forms to 8 weeks as standard to allow people to obtain evidence as well as the support they need to fill in the form. Additionally, clear information should be provided with the PIP application form which tells people about the right to request an extension.

Only half of people with MS who want to know the PIP assessment criteria to help them fill in the PIP form have access to this information . This information is available online, however not everyone has internet access or is aware they can access it online. The information is not provided to claimants as a matter of course. We believe that having access to this information would make the process easier for people with MS, as well as improving the quality of the information given by the claimant in the form better. The DWP research recognises this would be helpful to claimants. The DWP should ensure the criteria and scoring system is provided to all applicants alongside the application forms.

We are pleased the DWP are introducing an online PIP form. However, the DWP should ensure the application process for PIP does not become an online process only and that claimants are still provided with the option to apply by paper form or over the phone. This is important because many disabled people, including people with MS, do not have internet access or face barriers with accessing digital services.

Many people with MS have told us the PIP form did not allow them to fully explain how their condition affects them, nor did it fully allow them to fully explain how their symptoms can fluctuate. The DWP should, in consultation with disabled people and charities, work to ensure forms allow people with progressive and fluctuating conditions, including MS, to fully explain how their condition affects them.

Finally, the application form is confusing for claimants regarding gathering supporting evidence for their claim. Many people with MS have told us that they found it difficult to gather evidence for their claim. People with MS are not always aware that they can provide evidence and there is a lack of clarity on the form on who they should get evidence from, as well as who will gather that evidence – the claimant or the assessor. Nearly 1 in 10 (9%) of people with MS told us that they did not know there was an option to provide evidence with their PIP form and 35% said they were unclear on who could provide evidence. 28% said they did not know they were able to send evidence from family, friends and carers with their claim . The DWP should strengthen assessment guidance on evidence collection. Forms need to be much clearer on who is expected to gather supporting evidence, and who can provide it.

14 - What could the Department do to shorten waits for health-related benefit assessments—especially for ESA/UC?

In the first instance, the DWP should ensure that claimants are only asked to go through a face-to-face, phone or video assessment in situations where insufficient evidence has been provided and/or collected to enable a ‘paper-based’ decision to be made.

Ensuring that evidence is collected by assessors and provided by claimants in an effective and timely manner could help to shorten waits for assessments. Therefore, the DWP should follow our recommendations for improving evidence collection processes, as outlined in our response to previous questions.

14a How effectively does the “assessment rate” for ESA cover disabled peoples’ living costs while they wait for an assessment? Is there a case for introducing an assessment rate for other health-related benefits?

The assessment rate for ESA does not effectively cover the living costs of many disabled people, including people with MS, while they are waiting for an assessment. People with MS have, on average, extra disability-related costs of around £200 per month. This means that, after extra costs are covered, people with MS over the age of 25 are left with only £100 to cover all of their other costs for an entire month while receiving the assessment rate. Meanwhile, people with MS under the age of 25 are left with only around £50 per month to cover all other costs.

Although benefits are normally uprated annually according to an index of inflation, the initial amounts to which that uprating is applied have not been assessed for adequacy. We would like to see policy in relation to benefit rates informed by research on minimum income standards along the lines of that conducted annually by the Centre for Research in Social Policy at Loughborough University for the Joseph Rowntree Foundation. The Government should regularly commission such research, not least in relation to the disability benefits rates.

The UK Government should ensure that all disability benefits are set at rates which lift all disabled people out of poverty, allow them to cover their extra costs and enable them to live independent and fulfilled lives. Independent living is not a matter of subsistence and the rates of disability benefits must reflect that. Benefits rates should enable disabled people to be able to afford to take part in the range of social and cultural activities that most of society takes for granted.

The Government should restore the ESA Work-Related Activity Component (and the equivalent UC LCW component). Their abolition in 2017 for new claims has caused hardship to many disabled people with very little evidence for its removal.

15. The Scottish Government intends to introduce its own assessment process for the Adult Disability Payment, which will replace PIP in Scotland from 2022. What could DWP learn from the approach of the Scottish Government?

While we do not agree with all of the Scottish Government’s proposals for Adult Disability Payment (ADP) their approach to the assessment process is something that the DWP could learn from. We are pleased that the starting point for the Scottish Government has been to adopt a human rights based approach which embeds the principles of ‘dignity, fairness and respect’. We welcome the following features of the ADP process:

              There will be a range of application channels; online, paper applications and face to face.

              Consultations will only be utilised as a last resort to gather necessary information.

              Consultations will be available face-to-face, virtually or via a phone call.

              Supporting information will be gathered by Social Security Scotland and can be provided by family members and carers as well as health and social care professionals.

Social Security Scotland have consulted widely with people with experience of the PIP application process to design the ADP application form and consultation process. The DWP should adopt a similar approach to embed service user experience at the heart of any changes to the PIP process.

15a. PIP started rolling out in Northern Ireland in 2016. Is there evidence that the Department learned from the experience of rolling out PIP in the rest of the UK?

The experience of people with MS applying for PIP in Northern Ireland has too often been poor and at times damaging to applicants. The MS Society has engaged with the assessment provider including providing training in an attempt to improve experiences and has been providing counselling support to many people who have had poor experiences of this benefit.

We ]endorse the conclusions in the Public Service Ombudsman’s report[2] that failings in the PIP process amounted to ‘systemic maladministration’. In this context, the question of whether or not the Department learned anything appears to be a moot point, as the overall outcome of the introduction of PIP to Northern Ireland has been poor. This is all despite a mitigation package being put in place which provided additional independent advice services and mitigation payments to those who were losing out as a result of benefit changes.

It is also important to note that Northern Ireland has a high number of PIP applicants per head of the population compared to Great Britain and legacy issues related to the Troubles which means the adverse impacts of these failures on disabled people are magnified.

The next section covers the following questions:

16. How effectively does the DWP work with stakeholders – including disabled people – to develop policy and monitor operational concerns about health-related benefits?

16a. What steps could the Department take to improve its engagement with stakeholders?

The DWP could give better warning of consultations and announcements, allow longer periods for people to respond, and give more insight in feedback around why they have or have not taken recommendations forward. This would improve our ability to engage on similar, but different, issues with our community in the future and for us to build the evidence that the DWP would choose to recognise, when experiences are not enough. This greater transparency of process and decision making will also facilitate better trust in the consultative process.

As an organisation one of the most common ways we are asked to engage with the DWP is via consultations. It’s important that our submissions to consultations represent the views of people with MS and we feel it’s important to include case studies and quotes where appropriate to illustrate the points we’re making. However, properly consulting people living with MS takes planning and time to execute on a large scale, which doesn’t lend itself to short periods for response. For example, the 2021 Green Paper gave people the standard 12 weeks to respond, despite its size. The sector came together asking for an extension as a reasonable adjustment which was refused. This was disappointing, and did nothing to improve trust and engagement between the Department and disabled people.

Occasionally, the DWP contact us and ask us to help them get in touch with people with MS. Recently this has involved facilitating focus groups between people with MS and the Department, and sharing details of events in specific areas, but again, often the notice given by DWP is too short. The DWP should also be more mindful of other potential channels of engagement (which has improved due to the pandemic), the time of day of meetings, and location. People with MS who took part in the focus groups have told us that while they felt participation was important, they didn’t always feel listened to, and it wasn’t clear from the Department how the information they gave would be used.

Other ways we are asked to engage/provide experience is via stakeholder engagement groups including e.g. PIP Forum, OSEF, and the HTP. For some of these, the DWP invite disabled people, but more often than not its charities that are asked to participate on their behalf. Most of our work involves presenting the DWP with evidence we have gathered from people with MS ourselves.

We find that the more we engage with the DWP on people’s behalf, the more we are invited to participate. For example, we will receive more invitations to smaller meetings with civil servants. This can be to push our specific recommendations with them or to help them by providing insights on people’s experiences with specific proposals. Increased invites to participate have come from building a reputation on an issue and from building relationships with civil servants. Without us having the resources, capacity and willingness to engage, we’re not aware of how the DWP would be ensuring the voices of people living with MS would be heard in their consultations and in a robust way.

More recently, ambitions around engagement do seem to be improving. This is a different approach, with disabled people saying when and where they can engage, but we would still say that engagement directly with people with MS is low, doesn’t appear to be a priority and as a result could be seen as tokenistic. It could be assumed the DWP trust us to represent people with MS with no ulterior motive than to act on what we hear from our community, meaning they get a wider representation than interviewing a smaller number of individuals. However, we would say that engagement should be with both individuals, and with organisations like us.

A negative of engaging with the DWP can be the lack of trust for the DWP that exists within our community and with others. Engagement is a reputational risk that we have to balance. Working to or influence or improve a proposal from the DWP so that it better reflects the needs of disabled people can sometimes be difficult to support in its final form, if it doesn’t go as far as we would have liked to see to protect disabled people. Similarly, it can sometimes be difficult to put a face to the issues that DWP policies cause. A lack of trust has an understandable impact on people’s willingness to act publically. They often say they live in fear that if they say something critical of the DWP they may have their benefit award reduced or taken away.  This can mean they are reluctant to speak to the DWP directly. This is a real barrier for the DWP in their ability to talk directly to people with MS. It also means that those who do speak to are more confident and are perhaps the least vulnerable, skewing the information they get.

Small improvements the DWP are making to  engage people around the country could change this, but this will be a difficult issue to overcome. Having people that are trusted in the room will be essential, as well as some guidelines from DWP around how they will treat information shared in these sessions.

The recently published Disability Strategy states: “We have carried out the biggest listening exercise with disabled people in recent history…A huge range of organisations and individuals have shaped the development of the strategy…42 Regional Stakeholder Networks (RSNs) meetings have taken place.” Unfortunately, many disabled people and Disabled People Organisations (DPOs) disagree. There was anger regarding the content of the survey, as well as the length of time given to respond (while the survey ran for a number of months, it stated that only responses given in the first few weeks would be taken into account when developing the strategy). We have also heard anecdotally that the RSNs were less than effective, with many rarely meeting, and others feeling they weren’t listened to.

There are positive tangible outcomes of engagement, where the DWP is willing to allow that. Everything should be done to ensure that levels of engagement are as high as they can be, are effective, and are not just seen as a box-ticking exercise.

 

[1] DWP StatXplore (July 2021)

[2] Ombudsman finds ‘systemic maladministration’ following PIP investigation’ - Northern Ireland Public Services Ombudsman

 

November 2021