Written evidence from Citizens Advice Gateshead (HAB0032)

 

This submission has been drafted by Citizens Advice Gateshead Research and Campaigns Coordinator Alexander Egan Ph.D, and Research and Campaigns Volunteer Niamh Storey – based on our service’s experience with clients who have sought advice about claiming health-related benefits. Health-related benefits are the topic of 1 in 6 enquiries to our advisers, making them the single largest category – over the last 4 years we’ve seen an average of 587 advice issues per month relating to Personal Independence Payment (PIP) alone. The majority of our clients have queries regarding eligibility and how to make a claim, with many seeking help to complete the forms. However, some clients’ issues are more problematic. Health-related benefits are more likely than any of our other enquiry areas to be flagged by our advisers as featuring unfairness in policy or practice that has adversely affected the client – in the last 4 years there were 321 cases highlighted, and more than 1 in 3 of these reports an issue with the medial assessment process of the benefit claim. This written submission draws on these case studies and features input from front-line advisers who help clients with their health-related benefits claims daily.

 

Summary

We welcome this opportunity to raise our clients’ concerns about the medical assessment processes and applaud the Department’s attempts to work towards a fairer system. To sum up our key views:

 

Suitability of assessments

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

 

The most common problem our clients have experienced with the medical assessment process was that they felt the assessor did not understand, or try to understand, their condition(s) and how it affects their daily lives or ability to work. Another common theme reported was that while policy is in place to afford special measures to people who will struggle with the face-to-face assessment process these are simply not used or offered for unknown reasons.

 

The introduction of a face-to-face medical assessment, based upon quantitative ‘scoring’ criteria, represented a key change between legacy DLA and PIP. The premise of PIP rests upon a need to emphasise the impacts of disability upon individuals, rather than focusing on the condition itself as determining needs which, for many, was a welcome change. However, the need for face-to-face instead of paper-based assessments is debatable. Indeed, the Department’s health transformation programme and questions posed later in this call for evidence suggest the possibility of reverting to rely more on paper-based assessments, with more emphasis put on input from clinicians and work done ‘in house’ being considered. We welcome that this is being explored as we believe based on our client’s experiences that it will lead to an improvement in the quality of the assessment process, as well as claimant trust therein.

 

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

 

Yes. The rate at which cases were highlighted to our Research & Campaigns team about poor medical assessments showed improvement towards the end of 2018 into 2019. At the peak in early 2018 we were seeing a case with a poor medical assessment highlighted on average every 2 days. In the latter 6 months of the 2020/21 financial year the rate had slowed to one every 24 days, suggesting the situation had somewhat improved. However, cases are still being highlighted to-date.

 

In the last 4 years our advisers noted 27 cases which showed improvements in the assessment process, which will be a fraction of the real number due to inherent bias in reporting, with advisers much more likely to report problems. In particular, improvement was seen in the assessment of degenerative neurological conditions such as Dementia, and other lifelong illnesses which deteriorate over time. They also noted some improvement in the assessment of mental health conditions on a person’s ability to work and live, though there is room for more improvement in this. In our experience, early investment in social support can lead to savings in the long term. Particularly with mental health issues, if these are supported effectively with early intervention and support they can be prevented from deteriorating beyond a point where simple interventions can help. We have seen numerous cases where clients have had PIP applications related to mental health conditions rejected, which has compounded their issues before the decision was overturned at appeal. Ultimately, this has led to the client needing a longer benefit award than they would have originally, costing the Department more in the long-term.

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

 

Whilst we recognise that there is a need for some level of categorical framework for measuring eligibility and distributing benefits, we believe that the favouring of a quantitative scoring method for these criteria leaves little room for the input of individuals and their experience of their condition and its impacts. The weighting of quantitative indicators of functionality (scored categorically using the answers ‘yes’, ‘no’ or ‘sometimes’) compared to the weighting of qualitative descriptions (e.g., in questions 3d, 4c etc) regarding the impacts of their disabilities provided by claimants is unclear. It is also unclear to what extent assessors take note of qualitative impacts described by clients in face-to-face assessments which may lie outside of these existing categories.

 

Social Welfare Advisers Lisa Douglas and Sarah Craggs add that the descriptors assess the difficulties well, however it is the interpretation by the assessor at face-to-face medicals that appears to vary. Sarah Craggs adds “Sometimes clients can manage to perform an activity in the moment – such as a short walk, climbing stairs, or other daily living activities in one day – but then due to this exertion, are unable to get out of bed the next. This is particularly true of ME/CFS (Myalgic encephalomyelitis or chronic fatigue syndrome) and post-viral chronic conditions such as long covid. I think it is important that questions are added to enable the assessor to understand the impact of completing mundane and simple daily activity tasks on their ability to complete tasks the next day/week.”

 

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

 

Similarly for the PIP descriptors, our advisers believe they adequately assess the difficulties, however the assessor’s interpretation varies, a belief supported by our case evidence.

 

  1. 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?

 

Our advice caseworkers run a free, impartial advice service at the Great North Children’s Hospital in our region and are highly experienced supporting parents through the whole application process for DLA. They find that the paper-based assessment process for DLA works well, and that clients tend to get good decisions with our help. However, they feel that if parents were attempting to complete the forms themselves that they would struggle.

 

The DLA form is long (37 pages) and often has only tick boxes for given criteria. Parents who do not know a lot about DLA tick the box to say their child cannot do something, or needs help with it, but then do not elaborate with the detail needed on the form, such as explaining why they need help and whether it is to do with their health condition(s).

 

Social Welfare Adviser Kate McIntyre writes - “Through the hospital projects our clients get help to complete the form but I imagine many parents who do not get this help struggle to put the detail required. However, the fact that it is paper based means less stress for the parents and that the process is quicker because you are not waiting for a face-to-face assessment”.

 

5a. Before PIP replaced DLA for adults, DLA was also assessed using a paper-based system. What were the benefits and drawbacks of this approach?

 

To echo our adviser’s experience above, the main benefit of a paper-based approach is that it is overall less stressful to claimants. A key drawback is that many claimants may struggle to effectively communicate the way their condition affects them and why. This is addressed by the provision of impartial advice such as that provided by our service, but not everyone knows this is available, or chooses not to reach out for various reasons. This balances the responsibility of evidencing their conditions, involving others (such as healthcare providers or social welfare advisors) in the process.

 

Social Welfare Adviser Lisa Douglas adds “I think the benefits [of a paper-based system] are that claimants are able to take the time to explain their difficulties in more detail, however this is also a drawback as it requires insight into their condition.”

 

  1. 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?

 

At Citizens Advice we advise clients who seek our help with health-related benefits claims to seek evidence from their health professional(s)/clinician(s) explaining how their condition affects them. Therefore, in most cases we see clinicians are already providing valuable input that factors in the decision-making process, suggesting it would be practical to rely upon it. However, we’re aware some health professionals won’t help with benefit applications and others may charge a fee. This would impact on the practicality of exclusively relying on such input unless policy was put in place to ensure medical evidence were readily given to people who legitimately require it.

 

Relying solely on clinician input would create a power imbalance between claimants and their clinicians which could exacerbate existing inequalities in access to appropriate diagnosis and treatment. For instance, a recent report from The Health Foundation (Fisher & Fraser, 2020) reported inequalities in patients’ experiences of accessing General Practitioner (GP) services which differed according to geographic, socioeconomic and demographic factors. Whilst enabling clinicians to provide evidence could remove some of the responsibility from clients and thus reduce the potentially stressful nature of the application process, this could be less favourable for potential claimants who do not have these clear diagnoses, good relationships with their clinicians, or who otherwise fail to engage with healthcare to achieve a diagnosis. It would be beneficial, therefore, to involve both clinicians and claimants in these processes.

 

Likely benefits of the approach:

 

Potential drawbacks:

 

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

 

At Citizens Advice Gateshead, of the clients we helped at appeal in 2019/20, 90% had the decision overturned in their favour. In our experience this high level of decision reversal demonstrates irrefutably that there are inadequacies in the medical assessment process, which therefore impacts the subsequent decision-making process. From our case evidence it appears to be due to inadequately trained, or inadequately performing, assessors who do not understand the impact a given health condition has on the daily lives or ability to work. There also appears to be a lack of understanding that the physical symptoms of many conditions can vary from day to day. Several of our clients report that their PIP assessment occurred on a “good day” and so they were not awarded the points they felt they deserved, a feeling later confirmed by appeal in many cases.

 

The high rate of decision turnover at appeal suggests that the mandatory reconsideration process is unable to identify incorrect decisions and overturn them. An examination of this process should be carried out to ascertain why this is the case. Could it be changed to enable it to be more effective? If not, is it worth the resources to have the process in place?

 

Some responsibility must also be placed on claimants, as the high rate of turn over may also reflect that it is hard for many to articulate the impacts via their claim forms and face-to-face assessments themselves, and key pieces of information may be missing which don’t properly come to light until a clinician is involved in the process, either in submitting medical evidence or at tribunal itself. However, this would also suggest that the processes for self-assessment are not fully accessible to potential claimants. Increasing uptake of impartial advice from services such as ours at Citizens Advice may improve this. A similar project to the Universal Credit “Help to Claim” programme may be beneficial.

 

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

 

Given that it is often the input from clinicians at tribunal which leads to the overturn of the original decision against the claimant, it is reasonable to believe the proposal in Q6 to rely more on clinician input in the decision process would ensure fewer cases go to appeal.

 

As touched on in Q7’s answer, improving guidance and support made available to claimants, either directly from the Department or through an analogous project to “Help to Claim”, would likely improve problems arising from claimants not understanding the process and poorly communicating the impact(s) of their condition(s) on forms. Also, as touched on later in Q10, offering claimants a choice of assessment method (e.g., paper based, telephone, or face-to-face, or combination) should improve their engagement with and performance through the process, getting the best evidence out of them at the earliest opportunity. Social Welfare Adviser Lisa Douglas also adds “Carers should also be allowed to provide comment, rather than just going off what the claimant says, especially with conditions such as autism, learning difficulties, dementia, etc as they will generally say they are fine and can manage everything when this is not usually the case.”

 

  1. 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)?

 

It would be logical for cases where a claimant is applying for both PIP and ESA, following a life-changing injury for example, to be combined. Our clients often report to us how stressful they find the application process, and so streamlining the process would be beneficial to claimant mental health, likely saving money in future social costs resulting from poor mental health, as well as saving the Department resources. Using the above example, while PIP and ESA have different criteria to their eligibility it should be possible for the validity of a person’s claims to be assessed simultaneously. This combined approach would be compatible with the proposal in Q6 that assessments rely more on the input of clinicians, though clinicians may need guidance on the information decision makers need.

 

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

 

Our opinion is that the programme is a welcome attempt by the Department to improve the services they offer to those with disabilities and health conditions. We would like to see the quality of assessments improve to a point where we no longer see clients who feel their assessor had limited knowledge of their disability or health condition, and felt prejudiced against when their award decision does not match their own experience of living with a disability. Our case evidence suggests this is particularly true for those with mental health conditions. After legacy DLA transitioned to PIP people with mental health conditions, or learning difficulties were twice as likely to lose their award than those with physical conditions (Pybus et al. 2019). We hope that the voices of claimants in the pilot ‘Transformation area(s)’ are prioritised when developing these new assessment processes.

 

We would also like to see the programme attempt to address a gap or ‘silence’ in disability benefit policy – poverty. PIP is intended to provide additional financial support to help cover the extra costs of living with a disability and is therefore applicable to people both in and out of work or education. However, in the absence of wider support for disabled individuals and in the current economic climate of rising costs of living, those living in poverty may be forced to spend this money on essentials, rather than as intended upon specialised equipment, care, or mobility. Many of our clients who live in poverty have reported using their PIP award like this, and have expressed that the extra expenditure due to their condition can be higher than the award. Although PIP is embedded within wider welfare support, it may be that the needs for financial support outweigh the current provisions for many claimants, who may find that the increased living costs of their disability or health condition are not met.

 

9a. (For people claiming) Would you like to be able to manage your benefit claim online?

 

Our typical health-related benefits advice topic clients (not including Universal Credit) tend to be older than our average client, the most represented age groups are 55-59 and 60-64. They also tend to favour in person advice, rather than digital channels such as those available online. Together this suggests they may be less digitally literate than average, and may struggle if claims were managed online. But we recognise this is just a subset of claimants, and the nature of our service is such that there is a bias in our client-base towards older, less digitally literate clients. We expect there will be many people who would like to be able to manage their claim online via the proposed digital platform. We urge the Department to ensure claimants are provided with options that suit them, and are not restricted to online only, as has been a problem for some Universal Credit claimants.

 

9b. 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?

 

We welcome the Department’s objective to increase trust and transparency and believe bringing assessments in house would dramatically improve trust in the process in the short term and, if executed correctly in house, in the long term too. Anecdotally, many of our clients view these external organisations as working solely for profit, and not for the benefit of the vulnerable in society. There is a feeling of a lack of accountability for them, certainly compared to the accountability that a government department is held to.

 

A drawback in the short/medium term would be the challenge of recruiting and training assessors to sufficient standard to execute quality medical assessments. However, if considered alongside the potential for decision makers to rely more on input from clinicians (Q6) and shift more towards paper-based assessments the need for such recruitment and training would be lessened. In all we believe moving assessments solely in house would be a positive step.

 

  1. 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?

 

Testimony from our advisers who have worked throughout the pandemic, including through each lockdown, suggest the Department’s way of handling claims has benefited many of the most vulnerable. Particularly in cases where a client, or their child, has cancer and therefore have a weakened immune system due to the treatment regime. They can spend much of their time at hospital in a poor condition. A telephone-based assessment is safer and easier for them to engage in and means that they can fit it around their treatments. Such assessments have also relieved the physical and mental strain that comes with attending a face-to-face assessment for these patients. Many claimants feel more comfortable at home enabling them to engage with the process better, which should lead to more effective assessments, and in turn lead to fewer appeals.

 

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

 

Yes. There is a case for keeping, even furthering, the shift towards paper-based assessments, as well as for keeping telephone assessments where paper-based alone are insufficient. For patients described above, or those with severe mental health issues, a move away from face-to-face assessments towards telephone will be beneficial as it allows them to explain their health conditions to a health professional while reducing the frequency of missed assessments, and the mandatory reconsiderations that follow as it is easier to attend by phone. However, clients with specific needs requiring special measures, such as those who cannot use digital channels, must be considered. A system which gives claimants greater agency to choose would be ideal.

  1. Most assessments for Industrial Injuries Disablement Benefit were suspended during the pandemic. What has been the impact on people trying to claim IIDB?

11a. 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?

11.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?

  1. 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?

 

As a third sector organisation we were acutely aware that the early response from organisations like ours to maintaining services through lockdown meant many clients were unintentionally excluded, particularly those with low digital literacy. In April, May and June 2020 we advised on average 231 fewer clients per month. Though we’re proud to have still be able to help more than 1,100 each month in that period. We were able to quickly adapt our advice services to entirely digital means during the first lockdown, relying heavily on telephone-based advice. We’re aware that many other third sector organisations were not as dynamic and it is therefore no surprise that applications dropped nationally in the early stages of the pandemic.

 

The main implication of this is that some claimants find the application process too daunting to tackle without support. Indeed, this is a sentiment regularly expressed by our clients. This suggests that the Department could be doing more to ensure people are able to access health-related benefits consistently, showing the merit of the transformation programme.

 

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

 

The Help to Claim project, where the Department supports Citizens Advice to assist people with the Universal Credit claim, has been widely successful. An analogous project for health-related benefits may help ensure people are able to access these consistently, and that they understand their rights and responsibilities from the outset. This support is likely to reduce the number of claims going to appeal, as claimants are supported to give their best evidence early in the process.

 

The impact of assessment/application on claimants

  1. 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?

 

As touched on in our answer to Q10, a great deal of the stress involved in a claimants’ journey through the system lies within the assessment process. While many find attending face-to-face assessments challenging, others may prefer it to paper-based or telephone assessments. We believe an effective way of addressing the impacts on claimants mental and physical health would be to give them a choice of preferred assessment route. Another source of stress in our experience is the anxiety of long delays to the process and to appeals. As discussed in Q12a, if a similar system to Help to Claim was adopted for health-related benefits this support would likely reduce the number of claims going to appeal, thereby reducing that source of negative impact.

 

 

References:

 

Fisher, R. & Fraser, C. (2020) Who gets in? What does the 2020 GP patient survey tell us about access to general practice? The Health Foundation. Retrieved from: https://www.health.org.uk/news-and-comment/charts-and-infographics/who-gets-in

 

Pybus et al. (2019) Discrediting experiences: outcomes of eligibility assessments for claimants with psychiatric compared with non-psychiatric conditions transferring to personal independence payment in England, BJPsych Open, 5(e19), 1-5.

 

 

November 2021