Written evidence from POhWER (HAB0027)
Executive Summary
POhWER is a national human rights advocacy Charity supporting everyone who needs a helping hand through advocacy to lead independent lives and to uphold their rights. Last year we supported 400,000+ people to have their rights upheld in public institutions.
POhWER’s advocacy, information and advice services are outcome-focused and client-led. Our advocates are trained to work with all clients to focus on identifying, recording and reviewing outcomes for each individual. We often receive daily advocacy cases related to benefits and questions about what rights people have within before, during and after benefits assessments. We note a significant gap in rights-led advocacy provision to enable individuals to challenge, complain and understand their rights as it pertains to what benefits they should be accessing and what they can do to challenge decisions.
We are submitting detailed evidence to this Parliamentary inquiry which supports two key themes:
There are currently no professional and nation-wide independent advocacy services available for all individuals going through an PIP/ESA/DLA transfer or IIDB, and extremely limited access in a minority of Local Authorities where it is commissioned, and often for specific client groups only and not accessible for all. This often equates to a lack of fairness in the system and a postcode lottery and unequal success of appeals.
There is a significant opportunity to improve procedures, policies, knowledge of staff working at the DWP or through outsourced private sector organisations to promote fairer assessments and outcomes in like with public equality act duty. Better procedures would reduce cost, drive efficiency and promote equality.
Examples of cases POhWER has recently handled
Between 01.10.2020 to 30.09.2021 we supported 619 beneficiaries with issues around benefits in areas including (not exhaustive):
LB of Barnet, Bedford, Birmingham, Brighton & Hove, LB of Camden, East Sussex, Gloucestershire, Hertfordshire, LB of Hounslow, LB of Islington, LB of Lewisham, Luton, Royal Borough of Kensington & Chelsea, Oxfordshire, Nottingham, LB of Tower Hamlets, Sandwell, and Westminster City
Benefit Issue | TOTAL |
Accompanying/supporting clients to meet with CAB or other specialist agencies | 265 |
Referral to specialist agencies | 217 |
Liaising with benefits agencies | 113 |
Support around communication | 22 |
Referral/access to solicitors | 2 |
POhWER have being involved in supporting beneficiaries with PIP since the beginning in April 2013, and ESA since 2008.
We have numerous examples of us supporting beneficiaries in hospital and or under sections of Mental Health Act where care coordinators planning discharge are external and PIP cannot be applied whilst admitted and Universal Credit used as emergency. Unnecessary stress and bureaucracy for patients who have to be subjected to the process for PIP after it becomes urgent for them and not before.
Numerous examples of particular inpatients at mental health wards getting into financial difficulty and bill/rent arrears and having no allocated social worker or care coordinator and advocates being only person available to help. Examples of NHS staff trying to help where they can however it is not their role and they don’t generally have capacity to support with these issues and it is not the same in every unit.
Numerous examples of processes seemed geared to make the client fail. Assessors present as looking for reasons to not grant benefit.
Significant volume of examples of misrepresentation of what happened and was said during assessment (these are actual comments from completed assessments which were used in successful appeals):
Beneficiaries are not given reports about themselves unless they request it from DWP; they are also generally never told by the assessor this is available. This report includes assessors’ opinions around eye contact, how the person is dressed, and their body language which may be irrelevant for what they are being assessed for. Beneficiaries have commented they are “assessing my dignity”. Without advocate involvement our beneficiaries would not know they can access this information about themselves. Many examples of assessors also not knowing people can access their reports.
Many examples of if PIP/ESA not granted, the appeal letter with reasons why person is appealing is enough for DWP to grant benefit at mandatory reconsideration stage, and court hearing is not required. This is evidence presented to the assessor yet not considered in outcome yet is accepted by DWP.
Numerous examples of attending a court appeal where the beneficiary’s solicitor presents evidence and DWP solicitor say they are not going to contest at all, yet evidence they have is same as was presented to the assessor at first meeting.
Numerous examples of where we have supported parent/carer/guardian through PIP/DLA process, particularly those who support persons living with autism, and they have struggled with the complexity of process, the requirement and language needed for forms, and attitude, relevant training and skills and general conduct of assessors from varying contracted companies. Time of assessments being limited was a major factor for this client group; many examples of setting 45mins as insufficient for someone with autism to be explained and to respond at their own pace and level about their own life, and time factor being the major issue for the assessor and resulting in extreme distress for the claimant.
POhWER advocates have also have individual experience of being claimants themselves, and this example of the problems a professional advocate encountered illustrate what people may face:
These experiences of our own staff has highlighted serious concerns over process when a qualified advocate and a social worker daughter struggle to be heard accurately and get refused and appeal and win with same information; how can a person who struggles with authority, understanding and form filling and getting their view across hope to manage the process?
Suitability of assessments
We believe and have observed that the DWP would first and foremost need to gain the claimant’s trust in this process, as at present it is severely flawed and demoralising in areas, we provide services.
Place yourself in the claimant’s shoes. They haven’t chosen not to work. But due to illness or accident, they are no longer able to. The high-flying businesswoman injured in a car accident, the builder who fell off a roof and left paralyzed, the nurse diagnosed with a terminal illness after years of nursing others are examples of people POhWER has supported through our work. Now imagine their apprehension (and possible shame) of having to claim benefits. What choice do they have? With trepidation they attend the health assessment, not knowing what to expect. But they find out soon enough, as the assessor treats them with disdain and makes feel that they are conning the system. That they’re not really ill or disabled. Firing questions at them as she/he types away, barely looking at them. Then to receive the DWP’s decision letter stating that they’re not eligible, based on the assessor’s report.
Restrictions on PIP mean you cannot claim whilst you are still in a hospital or care home. The impact is that those who are entitled to it don’t get support prior to discharge. Universal Credit steps in as an emergency however this is unnecessary if PIP was applied as part of discharge process.
For persons subject to Mental Health Act, part of their rights should include a named person to ensure their financial and benefit status is maintained throughout their detention and reduce the risk of re-admission due to stresses brought on by bills/arrears or insufficient funds from mismanaged benefits.
To improve the assessment process, the culture needs to change. Whilst there may well be benefits cheats, those claiming health related benefits should not be deemed as such, given that they have medical evidence to support their claim. Therefore, the assessor’s approach needs to be more empathetic and tailored to presented needs. The claimant needs to feel that they are not only believed, but understood.
Updating categories descriptors and guidance for assessors on what they can move over and not ask irrelevant tick-box questions and having need specific categories as they currently stand can be hard to complete especially for mobility. A separate section for mobility related to mental health or non-visible disabilities such as autism might be important here. Rather than defined distances for walking, the emotional/sensory/vulnerabilities difficulties in relation to walking or using public transport need to be taken into consideration too. Also, example situations – familiar/unfamiliar, vulnerability, unknowingly placing self at risk, avoidance of the outdoors need questions that prompt disclosure.
Having more face to face at home for relevant beneficiaries where they can be more relaxed, be prepared for visit in advance and appropriately show their skills will not only reduce stress and strain for these claimant, but also save significant taxpayer funds in appeals.
Having an independent advocate support them before, during and after does alleviate much or all of the stresses and concerns claimants face, and POhWER has substantial evidence and experience to qualify this.
1(a). Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?
None whatsoever. If anything, the situation has deteriorated for our beneficiaries. Prior to 2018, POhWER advocates witnessed assessors trying to distort and misquote the claimant’s words and to make suggestions not related to their feedback. However, in recent years, the assessors have not only tried twisting the claimant’s words, but we have also observed multiple cases related to false accounts of the assessment. For example, ‘Ms X bent down and touched her toes’ – when the reality was that the client was in her wheelchair, had paralysed spine and we were present and this didn’t happen. Some reports are so far from the truth that our beneficiaries have queried if they had been sent someone else’s report in error.
There is also a strong hypothesis amongst many of our beneficiaries that the outside private sector agencies used by the DWP are being incentivised or performance managed to deliberately find a percentage of claimants ineligible, even when it is evident that they meet the criteria. There is evidence within POhWER to support this given what our advocates have witnessed at some assessments and having later read and challenged the inaccurate reports. Fortunately following challenge from POhWER, the decisions have always been overturned at appeal stage each time which is not cost effective and disruptive for our beneficiaries. Claimants have experienced unnecessary undue stress going through the appeal process when the outcome could have been decided in one meeting if assessors were competent.
3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?
They do not meet standards or expectations currently for the beneficiaries we represent. The descriptors are worded to encourage the claimant to say ‘yes’, when the true answer might be, ‘yes, but with difficulty.’ There should be more flexibility in how the claimant can answer, as saying ‘yes, but’ will get ticked as a ‘yes’, implying that the claimant can do more than they can, which in turn affects their benefit claim. For example, if asked if they can prepare a meal, the claimant might say yes, meaning they can put a snack in the microwave (as they are unable to cook), but the assessor may interpret this to mean that they can peel vegetables, gut fish, stand over the cooker, etc. Therefore, the questions need to be more specific, to give a clear indication of what they can and cannot do. Many of our beneficiaries live with disability or impairment which could cover a broad spectrum of physical restrictions on movement.
Updating categories descriptors and guidance for assessors on what they can move over and not ask irrelevant tick box questions, and having need specific categories as they currently stand can be hard to complete especially for mobility. A separate section for mobility related to mental health or non-visible disabilities such as autism might be important here. Rather than defined distances for walking, the emotional/sensory/vulnerabilities difficulties in relation to walking or using public transport need to be taken into consideration too. Also, example situations – familiar/unfamiliar, vulnerability, unknowingly placing self at risk, avoidance of the outdoors need questions that prompt disclosure.
4. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?
They do not meet expectations at present time. The descriptors focus on the claimant’s ability to function in their daily life (including using the toilet), by way of assessing their ability to work, which has no bearing on whether they actually can work and in what environment if so. For example, if you’re able to walk a few steps before needing to rest, this might be misinterpreted as the ability to do a day’s work. It doesn’t take into account someone’s mental or hidden physical disabilities such as chronic pain or cognitive impairment and presents as flawed or possibly discriminatory practice.
Therefore, it would be helpful if the assessor had some insight and understanding of the claimant’s disability/illness and how it would affect their ability to work. In theory, the assessor is supposed to be a doctor/nurse/ physio, etc., whom you would expect would have some understanding of the claimant’s circumstances. Yet the assessor asks seemingly irrelevant or inappropriate questions (i.e. asking someone in a wheelchair to walk across the room – we have witnessed this numerous times); as if to imply that the person is faking their disability to claim benefits, even with medical evidence. There is a one size fits all approach when this clearly doesn’t encompass specific individual needs.
5 (a). Before PIP replaced DLA for adults, DLA was also assessed using a paper-based system. What were the benefits and drawbacks of this approach?
The benefits of the paper-based system were not having to endure an assessment whereby the claimant is made to feel they are somehow ‘defrauding the system’ including faking their disability/illness despite medical evidence.
The drawbacks are that the paperwork may now not fully reflect how their illness/disability impacts their ability to function. For example, you may have 2 people who are in wheelchairs for example – one is able to manage fairly independently, whilst the other cannot. Yet there may be an assumption that the one who cannot is able to do more than they can, and be marked accordingly, without actually asking them.
In theory, a face-to-face assessment should clarify the latter. However, unfortunately this has not always been the case.
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?
Medical evidence would clarify that the individual’s symptoms/diagnosis would confirm their inability to work (ESA) and need of extra financial support (PIP) to manage their condition. Some cases are so clear cut (i.e., advanced cancer, brain damaged and bedbound and we have numerous examples of these situations at POhWER) that an assessment is completely unnecessary. Also, if someone’s condition is permanent or deteriorating, ongoing assessments are unnecessary if their eligibility and entitlement remains the same.
If the process could start during hospital/care home admission then there would be primary evidence from professionals treating the claimant and there would be no delays to DWP receiving required data, and little or no manipulation of the service and its qualifying clinical criteria.
The drawbacks might be if medical evidence is used for a short term condition where the claimant is likely to recover soon, but carries on claiming ESA/PIP regardless. However, it is unlikely that PIP/ESA would be granted.
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)?
Yes and no. In theory, for those claiming both ESA/PIP this could work as both benefits are for those with disabilities/long-term illnesses, and the questions are similar. Therefore, it may be less stressful to attend one assessment for both rather than two separate ones.
However, the assessments are for different purposes. ESA is specifically to assess if someone is fit for work in spite of their illness/disability. PIP, however, can be claimed whether you work or not and is not means tested; it is additional money to make your life easier – to pay for extra support at home, for example. Or to pay for a Motability car.
Also, if both are assessed together, there is the possibility that the claimant might be turned down for both, even if they might have been eligible for one had they applied separately; POhWER has managed cases where one benefit was successfully claimed, whilst they had to appeal to receive the other.
Regarding streamlining the process to save time, we have evidence is that it’s not always the time factor that’s the main issue, it’s the actual assessment itself that causes the anxiety. Some may be happy to wait as long as it is reasonable, and they are kept informed.
A combination assessment may be suitable for person in hospital and or subject to Mental Health Act and as part of their discharge planning process to avoid re-admission, however again it could not be the same for every patient as a person may be able to engage more effectively and appropriately if they have smaller interactions with assessors.
9. What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?
More interaction between the DWP and third sector organisations who work closely with claimants who are also our beneficiaries to co-produce and design changes is needed.
Creation of independent professional advocacy service for all people who wish to access this and the same rights for every postcode across the UK would remove geographical disparity and promote fairness and consistency. POhWER would be well positioned to advise and inform the design and pilot of such a model.
9 (a). (For people claiming) Would you like to be able to manage your benefit claim online?
From what majority of our beneficiaries have fed back to POhWER, they struggle to access their claim online (Universal Credit specifically) and would prefer to speak to an advisor. Having the option to claim online will be beneficial to many people however it cannot be the only route as this would and will marginalise the majority of our current client base including those with learning disabilities/difficulties and mental health needs who are digitally excluded and not comfortable using technology platforms.
9 (b). 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
From evidence collated of POhWER beneficiaries’ experiences, many have stated that they do not trust commercial private sector organisations such as Atos, Capita, or Maximus to treat them fairly or treat them like human beings with dignity. There is a belief from our beneficiaries that commercial interests and profits are at odds with people-centered outcomes. Our beneficiaries had more success after a Mandatory Reconsideration from the DWP following a negative PIP/ESA decision based on a false account given by the assessor. Therefore, we have significant evidence that to consider bringing it “in house” would be the preferred option and given the outside parties’ damaging track record based on client information, this would allow for quality control, likely reduction in appeals given experience of DWP accepting evidence rejected by external assessors, and consequent reduction in stress for clients and potential sizeable savings in time and costs for DWP.
The drawbacks might be that the sole decision rests with the DWP and there would need to be a robust and clear challenge and or complaints process with independent support for claimants to pursue this route, and independent verification of DWP’s conduct.
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?
Using Zoom, Teams etc. to ensure assessments continue has been largely a success and ensured some clients have had their assessments completed successfully. There is evidence to suggest that remote assessments could be retained and offered to claimants where applicable, however this would need to be as caveat that if they could not facilitate a remote assessment then this would not affect the time delay for their claim and a physical meeting would take place. Beneficiaries cannot be penalised by assessors if remote assessment cannot be achieved and equal service for all must be maintained.
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?
a. How can the Department best help the third sector to support claimants in their applications?
The implications are significant to very vulnerable UK citizens of all ages and ethnicities and socioeconomic groups. Our beneficiaries have reported a detrimental impact on their physical and mental health due to lack of money for food, bills, rent, amongst other essential outgoings and needs.
However, for those new claimants who were unable to get support with form filling, one way around it would have been for a DWP staff member to complete the form for the claimant over the phone, with a third sector worker/advocate patched in on a 3-way call to support their beneficiary to answer the questions (as charities were offering remote support during lockdown). Better still, if the DWP might email the advocate a copy of the blank form to discuss with the beneficiary beforehand, to prepare them for the DWP’s call. The DWP could then potentially send both advocate/beneficiary a draft copy (post/email) of completed form afterwards for each beneficiary to discuss with advocate over the phone (advocate could read it to them if needed), before the beneficiary signs and returns it.
This scenario could have been the prequel to the current 3-way call phone assessments that are currently happening now due to the pandemic.
Creation of independent professional advocacy service for all persons who wish to access this and the same rights for every postcode and for the entire PIP/ESA/IIDB/DLA programme process, including any appeal would reduce times for everyone involved by targeting claimants focus on what is required as evidence, and ensure assessments are swifter and beneficiary centred.
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?
From working with PIP/ESA/UC claimants, every beneficiary without exception has expressed extreme stress, fear, and apprehension about their forthcoming assessment. Often the main reason is that they have had a previous negative experience, and or it can significantly affect their mental health recovery process. POhWER advocates have been present when assessors have dismissed medical documents offered (‘I don’t need to see that’), twisted the claimant’s words (So, when you go for long walks..’, appearing to imply that they are not that disabled, to which the claimant replies,’ I said my carer pushes my wheelchair.’ Or the assessors have been untruthful in their report to the DWP; which is a separate report (40 or so pages long) from the DWP report/decision letter that the beneficiary receives. POhWER advocates encourage beneficiaries to request this other report from the DWP should they need to appeal – which some inevitably do. Unfortunately, we have numerous examples of this ‘in-house’ report often states a different story to what actually took place during the assessment. For example, Ms X is fully mobile and requires no assistance. When in one example in London, Ms X is housebound, and paralysed after several strokes and the assessor falsely recorded she could walk even when a witness was present; the decision was overturned at the Mandatory Reconsideration stage without needing to appeal.
Policy development
16. How effectively does DWP work with stakeholders—including disabled people—to develop policy and monitor operational concerns about health-related benefits?
The DWP could invite organisations/charities to report trends regarding the experiences of their beneficiaries and their lived experience, and get their views on what improvements they themselves would like to see – as it’s their lives that are affected. Independent sourcing of beneficiary experience would only add credence to the information produced and allow transparency for DWP and those oversizing their work
POhWER beneficiaries have not reported any examples of DWP working with stakeholders that they are aware of. Co-production and continuous improvement is necessary to drive positive reform.
In answer to the second part of this question, the best way of addressing fears of ‘underhanded behaviour’ would be to record the meetings, whereby both parties have a copy of the recording, should it need to be disputed at a later date.
We have examples where the beneficiary told the health assessment office in advance that they will be recording it, and they were told they only could if they brought 2 Dictaphones so each could have a copy. The client did just that and unsurprisingly her assessment went smoothly.
Recordings could be audio or video for physical meetings, and for remote via Zoom, Teams etc. a copy of the recording can be shared with attendees. This level of scrutiny would have to remove the false recording from assessors if there is physical evidence for all to access. Local resolution meetings within NHS complaints service are generally recorded and have been for many years and there is no reason why this should be adopted for benefits assessments as a safeguard for all.
How the creation of an advocacy service promotes fairness
POhWER have numerous examples of beneficiaries arriving at PIP/ESA hearings and being judged on their appearance and effort they have made; if they have worn a suit or make-up and jewellery, had sourced a lift to venue from friend or family, we have experienced these persons being rejected that if they had these abilities to prepare for the hearing then surely their applications were void. Same persons win their appeals with an advocate preparing them appropriately. Claimants should not be judged on their appearance as a one off opinion, this is discriminatory and unequal practice as it is dependent on the hearing itself and not universal practice nation-wide. Not all disabilities can be observed by appearance.
Having an independent advocate available would ensure claimants are appropriately prepared for what questions will be asked and who might be asking them, and having an independent person who is able to support beneficiaries with complaints where required will vastly aid quality control and adherence from assessors.
Promoting inclusion and engagement for all during a challenging period in their life
POhWER supporting PIP/ESA appeals are almost universally successful when an advocate prepares the beneficiary in advance as to what will happen and what they need to evidence and why; only one example in London region where appeal was rejected, it was appealed again with solicitors and this was granted and substantial back dated funds awarded.
Challenging a PIP/ESA decision can be complex and personal issue and independent professional advocacy could provide impartial pros and cons of pursuing this avenue should a beneficiary wish to do so. Having a service everyone can access should they wish to do so, which may emulate the Independent Health Complaints Advocacy service, would ensure a level playing field for every person regardless of postcode or the commissioning foresight for a specific local Authority.
Complaints against the process and those involved in assessments for their actions/conduct could also be improvement for all involved as it provides similar approach to IHCAS service where the complainant is given support to appropriately word their complaint, and to understand the complaint process, procedures and potential outcomes. Rapid learning, themes and trends both positive and negative about an individual, locality or service can be found swiftly when targeted support around complaints is provided. Potential risks to persons and processes can be easily identified by DWP and the commissioned advocacy service.
What POhWER would want to see in the future:
Creation of independent professional advocacy service for all persons who wish to access this and the same rights for every postcode and region of where claimants reside.
This new advocacy service would focus on delivering three areas of support:
Person’s currently being assessed for and or appealing PIP/ESA/IIDB/DLA transfer have access to independent advocacy support.
All persons being subject to any future Health Transition programme have right to access independent advocacy support if they wish to.
Robust, transparent and independently supported complaints process established where same rights to independent advocacy are entrenched
PIP or future Health Transition programme applied for those in hospital/mental health unit/care home etc. as part of discharge planning process and not many weeks later and remove extra layer of bureaucracy for vulnerable people of Universal Credit.
Not one size fits all questions which must be asked for all claimants; some can be missed if paralysed and documents could reflect that, so levelling up for all:
Client has automatic access to report which will be sent by DWP in format of their choice, and doesn’t have to request a copy. Assessors will be aware their work will be accessible to the people they are assessing.
Recording of all remote hearings and copies of recording provided. Audio or video recording of face to face and where applicable a description of the client’s appearance and clothing so no contradictory evidence for final report.
November 2021