Written evidence from the Motor Neurone Disease (MND) Association (HAB0046)


  1. The Association is pleased to have the opportunity to respond to the Committee’s call for evidence on health assessments for benefits. Due to the severely disabling nature of the disease, many people living with MND will come to rely on the benefits system at some point to meet their daily living and mobility needs as well as meeting the financial gap through having to leave employment. Once someone living with MND has claimed benefits they will need to continue to do so on an ongoing basis as the disease is progressive. The latest available data via DWP’s Stat-Xplore tool indicates that as of July 2021 there were 2,146 Personal Independence Payment (PIP) cases with entitlement where MND was indicated as the disabling condition (DWP Stat-Xplore, 2021). The data also shows that only 1,091 (50%) of those cases were accessed via the Special Rules for Terminal Illness, despite MND being terminal in all cases. There is no equivalent data broken down to the level of MND as main disabling condition for Employment and Support Allowance (ESA) or Universal Credit (UC).
  2. The Association would welcome a system where a diagnosis of MND is enough to enable access to disability benefits without need for an assessment. Failing that, we want to see a health and disability assessment system with as little burden placed on people living with MND as possible, given they are living with the realities of a severely disabling, progressive and fatal condition. Within the parameters of the current assessment system, we would prefer to see people living with MND access the support they need via the Special Rules for Terminal Illness (SRTI) as a process far more appropriate to their circumstances and where the need for a face-to-face assessment is avoided. Otherwise, we would want to see people living with MND get the support they need through paper-based assessments, being placed on the highest awards available and be given ongoing award durations. We are also interested in the commitment made by DWP to test a Severe Disability Group, and its potential to meet some of these needs.

Suitability of assessments

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

  1. The assessment type needs to be appropriate to the individual needs and circumstances of people living with MND. The Association would rather an assessment be avoided altogether or be paper-based, but failing that it is important that the type of assessment takes into account accessibility needs and onset of symptoms. Many people living with MND experience speech and communication difficulties, which may make a phone assessment extremely difficult or impossible. For those who are experiencing a loss of function in their limbs, a virtual assessment may be preferable to having to travel to an assessment centre. We think it is therefore important that when an assessment is deemed absolutely necessary, the DWP and assessment providers offer a type of assessment that best meets that individual’s needs and circumstances.
  2. The quality of assessments for people living with MND could be improved by having claim handlers and disability assessors with a proper understanding of the condition, including an understanding of the sensitivities around it being severely disabling, progressive and terminal. People living with MND have previously fed back to us that they felt assessors did not properly understand the condition, nor demonstrate compassion and empathy. As an Association we have provided feedback on Condition Insight Reports on MND that are used by the DWP’s assessment providers. However there is no guarantee that they are used by assessors, nor is it enough to ensure they don’t ask inappropriate questions or demonstrate insensitive behaviours. 
  3. Finally, having the claimant’s assessment report made available and sent to the claimant as standard could also be a means of ensuring assessment quality, by allowing for scrutiny and holding assessors to account. 

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

  1. We have welcomed the Government’s intentions to make changes to the Special Rules for Terminal Illness, announced in July 2021, to extend the ‘reasonable expectation of death’ rule from 6 months to 12 months. Although yet to be implemented, we hope this change will enable more people living with MND to access the Special Rules, which is a process far more appropriate to their circumstances. Our remaining concern, however, is that there have been no initiatives to change a Special Rules award from 3-years to an ongoing award duration. We believe this should be changed to improve the experience for those few people living with MND who defy expectations and live for longer than three years.

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

  1. This approach could potentially work well in the context of MND as despite variation of disease progression and onset of symptoms, MND remains severely disabling and fatal in every case, with function unable to be regained once lost. Part of the problem with the current approach to disability assessments is that it is overly burdensome, intrusive, and insensitive to people living with MND, who are coming to terms with the difficult reality of living with the disease. Shifting the need for assessment away from individuals living with MND and relying on clinicians may therefore take away some of the stress and worry associated with the process.
  2. There are however important considerations that would need to be factored into this approach. The type of clinician being relied upon would be important, with those with greater specialism likely to have a better understanding of the impact of MND on daily life and ability to work. The amount of time required by clinicians to give input would also need to be considered as this could divert time away from providing other elements of care. There may also be issues to resolve around the DWP questioning clinical judgement, which we know to be an issue when it comes to signing off a DS100 form for Special Rules cases.

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)?

  1. We would be extremely concerned about any initiatives to merge the assessment processes for extra costs benefits such as PIP with employment-related benefits such as ESA and UC. Depending on disease progression, people living with MND may require support with the extra costs of living with MND at a different point to when they need to leave employment. There would also be substantial risks if a single assessment process to access all available support went wrong or delivered the wrong outcome for the individual, meaning most of their financial support would be compromised. Also, the omission of income or employment related eligibility requirements for extra costs benefits such as PIP should be preserved, and we have concerns that embedding it within one assessment process could open the gateway for means-testing of extra costs benefits like PIP in the future. People living with MND face significant extra costs irrespective of their income and employment status.
  2. However, it would be good if the different benefits and DWP systems could interact with each other in ways that can ease the burden that comes with applying for multiple benefits individually. For example, cross-identifying where someone has applied via the Special Rules for Terminal Illness for one benefit already, or similarly with the Severe Disability Group if that progresses beyond a test phase. This could also include reasonable adjustments being recorded at the first point of contact with DWP and then identified across other benefits applied for in the future. We recommend the idea of a ‘tell us once’ principle across the assessment system should be explored as this could alleviate a lot of the frustrations that people living with MND told us about having to fill out multiple forms, make multiple calls and constantly repeat themselves. Other suggestions we have received from people living with MND include making application forms simpler, better links and interactions between DWP and medical professionals, and an MND diagnosis triggering support immediately rather than having to be assessed.

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?

  1. We hope the DWP will keep in mind that online and virtual assessment processes are not always accessible to everyone, including some people living with MND depending on their symptoms and disease progression.

Waits for assessments

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

  1. In the context of MND, we believe this can be partially resolved by enabling people to access ESA/UC via the Special Rules for Terminal Illness, or the Severe Disability Group should it progress beyond a test. As the disease progress rapidly, it is essential that access to financial support is not delayed.

Policy development

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

  1. The Association is part of several ongoing stakeholder forums organised by the DWP, both in the policy and operational space. We have also been included as stakeholders for pieces of policy development such as the Severe Conditions Exemption, Special Rules for Terminal Illness review, and most recently the Department’s Green Paper. As part of this we have, on occasion, been asked to organise and facilitate meetings between the DWP, Ministers and people living with MND. We are pleased to have the opportunities to engage with DWP, yet it is not always clear whether the contributions we make and the feedback and insight we provide actually leads to meaningful change.

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

  1. We believe the DWP needs to take further steps towards genuine co-production of policy and service design, including involving people with disabilities directly to a greater extent.

About MND

About the MND Association

The Motor Neurone Disease Association is the only national charity in England, Wales and Northern Ireland focused on improving care, research and campaigning. We have over 9,000 members forming a powerful network that provides information and support for people with MND, their families and carers. We fund and promote research that leads to new understanding and treatments and brings us closer to a cure. We campaign and raise awareness so the needs of people with MND are recognised and addressed by wider society.


November 2021