Written evidence from the Brain Charity (HAB0038)

The Brain Charity offers emotional support, practical help and social activities to anyone with a neurological condition and to their family, friends, and carers. There are hundreds of different neurological conditions, including stroke, brain injury, dementia, cluster headaches, and many rarer ones too - we are here for every single one.


Our mission is to enable all those affected by neurological conditions to live longer, healthier, happier lives. We will fight together for an inclusive and just society: a world where stigma, hardship and isolation are replaced by compassion and understanding.


Being diagnosed with a neurological condition can be a frightening and bewildering experience; many people face unemployment, poverty and social isolation as a result.


We are a charity based in central Liverpool but serve the whole of the nation, offering support services including, but not limited to: counselling, welfare benefits advice, adult learning courses, confidence building courses, support groups for different conditions, employment support, carers advocacy, legal aid, supported volunteering opportunities and social activities for our service users. We have presence in four Liverpool hospitals and also offer a national information & advice service which includes a library open to the public and are currently constructing a neuro specific gym for client use.


Responses to questions have been formulated by experienced staff members who wish to provide honest and constructive feedback to DWP in the hope of change and reform.


Yours Sincerely,


Rhian Beckett

Employment and Welfare Projects Manager

Suitability of assessments


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

1.1.  There’s often a lack of consistency, rationale or accuracy in point awards, meaning more cases progress to mandatory reconsideration or tribunal stages. Do DWP work to a Quality Assurance Framework? If so, is it followed, understood and appraised? Visibility of this framework and how it is followed and appraised is recommended to ensure transparency and accountability of the DWP’s work. If there isn’t an existing framework, perhaps the Department would consider creating a framework is necessary in order to baseline, measure and improve quality?

1.2.  A frequent criticism of the assessment process is that assessors often lack a sufficient understanding of the claimant’s disability or health condition with specific lack of knowledge in the field of neurological conditions – those that affect the brain, nervous and spinal systems. We recognise the logistical difficulty of always matching specialist expertise to particular conditions, however, if an assessor does not have specialist knowledge of the condition they are assessing, it must be a requirement that they have accurate and up-to-date information readily available and can consult with or rely on evidence from experts who do have such knowledge.

1.3.  The DWP should therefore work with contracted assessment providers to improve assessors’ overall knowledge and understanding of disabilities and long-term conditions (including that a claimant may experience more than one at once, possibly both a physical and a mental health condition).

1.4.  Due to a lack of awareness of neurodiversity, clients can be leant on or their responses easily influenced by DWP assessors. Assessments can be hugely stressful for claimants and they may not feel confident or comfortable with questions asked, how they’re asked, or the tone of voice used. Robotic, script like assessments are often reported which then lead to inaccurate ability or confidence to answer questions or divulge details.

1.5.  As above, how questions are worded around mental health, especially around suicide, has been insensitive or asked in too much of a matter-of-fact way without regard for the person at the other end. Specific training from experts could be sourced to develop assessors’ knowledge on these sensitive subjects should be sought.

1.6.  Many assessments are now carried out over telephone which regretfully doesn’t give a true assessment of a claimant’s health needs and how they cope during interview. None verbal communication, body language and visible signs of distress which are prevalent in the neurodiverse community are now lost or go unrecognised so claimants may be unfairly or inaccurately assessed.

1.7.  The frequency of re-assessments for all benefits related to disability and health should be reviewed. The objective should be to eliminate pointless or excessively frequent reassessments, which drain resources and are stressful for claimants. For progressive conditions on enhanced, enhanced rates or those that are never going to improve by judgment of a medical professional, the Department should consider that reassessments needn’t be necessary.

1.8.  Specialist health professional assessments for specific conditions e.g., a neurologist consultant’s assessment, are not given enough weighting in award (or considered when it comes to later reassessments). This means a case can progress so far into an unnecessary MR or tribunal stage which drain time, effort and DWP resource and cause emotional distress, financial difficulty and impact on health and livelihood of claimant.

1.9.  The DWP should consider mandatory recording of assessments for quality assurance purposes for full transparency, training/re-training opportunities and to leave clear audit trails so contradictions cannot arise in the future.

1.10.                    In qualitive feedback gathered from our communities, often we hear of an “us and them” culture, between claimant and DWP. This is exasperated through robotic nature of assessments, on occasion, poor tone of voice, and insensitivities to neurodiversity and poor mental health. There’s long lead in times due to documentation being sent by mail which may be delayed, lost or insecure, long hold times on phonelines and misunderstanding amongst telephone operators about GDPR sharing of information, and lack of accountability on DWP personnel because often we have to deal with numerous employees.

1.11.                    In a spirit of constructive engagement, The DWP should also rescind its unsustainable policy of demanding repeated “explicit consent” in order to communicate with claimants’ advisers on Universal Credit (UC) matters. The restoration of an orderly system of “implicit consent” is essential if problems with claims are to be promptly and effectively resolved

1.12.                    There’s a perceived distrust or misconception across the community we serve of DWP targets and whether these can affect a claimant’s outcome. There should be an established independent Regulator of Benefit Assessments to give public confidence on the matter.


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

1.13.                    Unfortunately, through qualitative feedback we believe there has been regression, especially in light of the pandemic processes have worsened. The DWP like most industries had to react quickly in March 2020 and onwards. It is our feedback that rather than substituting in person assessments with telephone assessments as the Department did (see section 1.1.6 on why we feel these put those with neurodiverse/multiple needs at a disadvantage), a better solution would have been to extend the award until in person assessments could resume safely.

1.14.                    Moving forward, we believe a mixture of video and in-person assessments will improve accuracy and fairness of awards, acknowledging that for some claimants, the demand of getting to an in-person meeting might not be practical, safe or in their best interests, while it is needed for others. The DWP should rely on and trust the judgement of third sector organisations (like ourselves) to advise on what method is in the claimant’s best interest.


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?

1.15.                    -



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

1.16.                    There needs to be more rationale in how accurately the descriptors link in with one and other. For example, a claimant needing a commode for immediate bathroom use would be awarded maximum points under the bladder control section, but currently would not receive full points on the mobility section. If mobility was good there wouldn’t be a need for a commode so a more common sense approach is needed across section, as per the above example.

1.17.                    As another example, the mobility criteria for enhanced points should be moved from 20m to 50m, in the acknowledgement that this range is virtually bed bound.

1.18.                    We would like to see more descriptors added into PIP so a more well-rounded assessment can be judged. There are many day-to-day activities that are not taken into account. For example, washing laundry, buying shopping, ability to write/manual dexterity. These do not necessarily have to be full questions but something that should be taken into account when looking at the claimant as a whole. The ESA forms are much more comprehensive than the PIP forms and paint a fuller picture. Perhaps these activities would carry less points but would create a better overall picture of a claimant’s daily life.


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

1.19.                    The ESA descriptors are much better than the PIP descriptors in that they cover a much wider range of activities which claimants may struggle with. In doing so, it paints a better picture as to how the condition affects the claimant

5.      DLA (for children under the age of 16) and Attendance Allowance usually use paper-based rather than face-to-face assessments. How well is this working?

1.20.                    The transition from child DLA to PIP is particularly challenging. Supportive, high-quality assessment and decision-making and readily available advice and advocacy are crucial. As one of our member organisations powerfully remarked: parents of disabled children are often exhausted by constant medical procedures and appointments, constant battles to access services and equipment they need at the time that they need it, in addition to the day-to-day worry and huge burden of responsibility of keeping their child healthy, happy, and developing. Child DLA or PIP should assist them – not provide them with another complex battle to fight.

1.21.                    As the DWP already contacts families to identify if an appointee is needed, this call could be used to explain the differences between DLA and PIP and highlight that independent advice can help. 

1.22.                    In relation, the rule allowing DLA to continue to age 17 to facilitate a claim to be determined could be modified so awards of DLA can continue up to age 17 if PIP is refused, and to allow mandatory reconsiderations and appeals to be completed.

1.23.                    Moreover, the upper age limit for child DLA in any case needs reviewing. In Scotland it is already the case that young people receiving DLA can now continue to get it until they turn 18, although they can opt to move to PIP earlier if they so wish. We recommend that this provision should be extended to the rest of the UK.

6.      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?

1.24.                    As per suggestion made in section 1.1.8, specialist input isn’t currently given enough weighting or consideration. In the field of neurodiversity which is a broad, ever-changing field of public health, reliance on this input is vital to get the most accurate outcome for claimants, however the continuous need to re-evidence at reassessment stage is a further drain on NHS or specialist clinician’s in demand time, and stressful for claimants.

1.25.                    As per suggestion made in section 1.1.7 regarding progressive, terminal or life-long conditions, input for specialists should be sought and trusted on a one-time basis. The Department should also lean on third sector expert organisations that thoroughly understand the conditions as a call for evidence.


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

1.26.                    The majority of this question is answered in section 1 with relation to slow or inefficient processes, continuous lack of resource within the DWP and lack of awareness or sufficient knowledge of conditions and disabilities. A transparent and accountable Quality Assurance Framework would help the Department to review why such a high percentage of appeals find in favour of the claimant, as well as conducting interviews at lower management levels to understand the failings, mandatory recording of assessments to screen and provide continuous input.


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

1.27.                    Refer to answers provided in section 1


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 (e.g. PIP and ESA)?

1.28.                    There is a case for combining assessment processes for different benefits if the infrastructure is in place internally to allow DWP departments to do so. Currently, failures to protect the most vulnerable in society occur because cross cutting communications and links across organisational departments aren’t intelligent enough. Combining assessments processes must be well thought out in advance and include input from a stakeholder consultation before roll out.


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

1.29.                    There is a danger that in combining certain benefits under one health assessment, that the purpose of certain benefits will be conflated. For example, the ESA health assessment looks at someone’s capability for work whereas the PIP assessment looks at someone’s day-to-day functioning. Claimants on PIP are still able to go to work if they wish and are capable of doing so. Combining the health assessments together under one assessment might make it even more difficult for those who work to claim PIP.


b.      a. (For people claiming) Would you like to be able to manage your benefit claim online?


c.       What would be the benefits and drawbacks of DWP bringing assessments “in house”, rather than contracting them to external organisations (Capita, Atos and Maximus)? In particular, would this help to increase trust in the process? The impact of the pandemic

1.30.                    The disadvantage of contracting assessments out to private external organisations is the obvious cost implication and thus, feeding private sector profits. The disadvantage of bringing the assessments in house is that it may create or worsen public trust and reduce DWP accountability and transparency. A better working alternative would be to, via a thorough, fair and transparent procurement process, award assessment contracts to third sector or not for profit organisations as the trust is usually already built between claimant and supporting organisation, as most face to face appointments have already been conducted and the knowledge expertise already exists. It would also be an opportunity to give back to the charitable sector.


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

1.31.                    An agile approach is needed based on what is best for claimant, not DWP or indeed the assessment agency. As per section 1.1.6, telephone assessments fail many within the neurodiverse community, therefore due attention must be given to practical considerations relating to an assessment, especially where travelling is involved. For example: there should be flexibility regarding the location of face-to-face assessments; providers should be unable to double-book claimants; there should be no alterations to scheduled assessments – cancellations, time or location changes – without plenty of notice being given; telephone calls must be answered promptly; there must be safe and comfortable waiting areas for face-to-face assessments (claimants often have to arrive early, in order to minimise the risk of arriving late); and the potential need for reasonable adjustments should always be considered.

11.   Most assessments for Industrial Injuries Disablement Benefit were suspended during the pandemic. What has been the impact on people trying to claim IIDB? The obvious impact being that if the Department suspend a service, claimants who ordinarily would have been eligible for this type of benefit are then left worse off than they should have been through no fault of their own.
a. Some IIDB claimants will receive a lower award than they might have, due to the suspension of assessments, because IIDB awards are linked to age. Should the Department compensate these claimants? How? Yes, by offsetting the payments as to when they were received not by when the date they were reviewed, post suspension
b.      What lessons could the Department learn for how it deals with these claims in future, in the event of further disruption to normal services? Understanding and taking ownership of how a full shut down of a service can have a great and dyer impact on the livelihoods, physical and mental health of people who are already vulnerable. Become more agile and proactive in processes such as using secure electronic portals (rather than post) and allowing supporting organisations to advocate on a claimants behalf when they are instructed to do so as per section 1.1.


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

1.32.                    Better and intelligent communication channels internally and externally with systems that talk to each other.

1.33.                    A named account manager(s) for organisation to have a direct point of contact to speed up lead in times and maximise accountability

1.34.                    The restoration of an orderly system of “implicit consent” so problems with claims are to be promptly and effectively resolved, as per section 1.11

1.35.                    More resources pumped into DWP and better training on health conditions and disabilities including mental health and neurodiversity

1.36.                    Creating or sharing their Quality Assurance Framework so third sector organisations can help measure and appraise it

1.37.                    Create a secure platform for sharing data and documentation which claimant and third party supporting organisations may access for more efficient workings

The impact of assessment/application on claimants

13.  DWP recently published research on the impact of applying for PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?

1.38.                    No routine reassessments for those with progressive conditions, unless the client informs DWP of a change of circumstances.

1.39.                    Establishing far clearer rules relating to end of life. Some conditions are not fast-tracked even when it is accepted by all that the condition is terminal. This creates totally unnecessary delays and anxiety for clients and their families;

1.40.                    DWP assessments should be far more sensitive to neuro-diverse clients – those with communication or cognitive impairments are more often than not, not recognised within the assessment process. There is an over-reliance on the clients’ education history e.g., attendance at a special school, to evidence cognitive impairment. Too often, the effects of conditions that impair processing of information is missed.

1.41.                    DWP assessments often miss the significance of fatigue on clients. This is not merely ‘feeling tired’ and is very often the direct impact of conditions/neurological conditions (such as strokes) which impact on the client feeling very fatigued and compromise day-to-day functioning. Guidance should be expanded and clearer on fatigue and drafted accordingly with the help of professionals who work with a variety of condition, as well as with those who are diagnosed with conditions.

1.42.                    Specialist health professionals for specific conditions such as neurological and mental health conditions, as some conditions are not properly assessed.

1.43.                    Guidance on mental health conditions to be reviewed and strengthened. Health professionals and DWP staff too often look for interventions of tertiary care to evidence mental health conditions.


Waits for assessments

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

1.44.                    Far more effective sharing of information e.g., all necessary documentation regarding claims for benefits. Presently, many delays are caused by third sector agencies waiting for information before supporting clients

1.45.                    Greater use of electronic forms of communication to allow speedier sharing of information. Presently, the usual practice of using postal service is expensive and slow with reported unhappiness of lost documentation.

1.46.                    A named, account manager per organisation so accountability is upheld within the department.

1.47.                    Targets should be introduced for the length of time cases need to wait to be heard by a tribunal. Some claimants have to wait up to a year for a hearing. A target will help reduce waiting times.

1.48.                    The number of tribunal panel members should be increased, so that tribunal waiting times can be brought down to more reasonable levels.

1.49.                    Tribunals are increasingly moving online. It is important that this process should be carefully monitored, in order to assess both advantages and disadvantages for disabled claimants.

1.50.                    Full audits should be conducted of decisions that are subsequently changed at tribunals. This will help restore confidence in the system and provide ways of improving decision-making and inform ongoing departmental training.

1.51.                    There is a serious problem where extra costs benefits such as PIP are reduced or terminated and there is a lengthy wait for an appeal to be heard. Consideration should be given, in consultation with disability organisations and disabled people, as to whether the Scottish Short-Term Assistance scheme should be replicated in the rest of the UK.

15.  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?


1.52.                    Not well, as it does not match statutory sick pay which ESA often follows and should match as a minimum, noting realistically that it should be more since people who take ESA after SSP are more likely to have a long-term condition and need more support than someone who may take SSP for a short period.

1.53.                      Furthermore, many claimants are having to chase this payment and due to issues with poor administration, their claims are not being ‘received’ until months after they have been sent.


Health assessments in the devolved administrations

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?
a.      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?


Policy development

16. How effectively does DWP work with stakeholders—including disabled people—to develop policy and monitor operational concerns about health-related benefits?
a. What steps could the Department take to improve its engagement with stakeholders?

We receive much more involvement and engagement from regional DWP Disability Employment Teams but very little stakeholder engagement relating to policy development on health benefits.



November 2021