Written evidence from the Cambridgeshire ME Support Groups (HAB0041)

 

Summary

Members’ concerns relate to the shortcomings of the process for people suffering from myalgic encephalopathy/chronic fatigue syndrome, ME/CFS. NICE says ME/CFS is characterised by:

• Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive,
physical, emotional or social exertion, and is not significantly relieved by rest.
• Post-exertional malaise after activity in which the worsening of symptoms:
is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer.
• Unrefreshing sleep or sleep disturbance (or both), which may include:
feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.
• Cognitive difficulties (sometimes described as 'brain fog'), which may include problems
finding words or numbers, difficulty in speaking, slowed responsiveness, short-term
memory problems, and difficulty concentrating or multitasking

Our members’ concerns centre around the following:

  1. The application process is so exhausting that a large proportion of us never manage to complete it. It needs streamlining, including:
    1. Making application possible online or in writing
    2. Make assessments available paper-based, at home, by phone or by video as preferred
    3. Minimising the length of assessment interviews by obtaining as much information as possible from other sources
    4. Making independent third-party support available at every step of the process.
  2. The assessment interview and the descriptors are not fit for use with ME/CFS.
    1. Assessors often misrepresent claimants’ responses. Interviews should be recorded and the assessors’ report made available by default
    2. Descriptors must be adapted for an invisible, highly variable illness that radically limits available energy and leaves sufferers sicker for days or weeks after exertion.
    3. Descriptors need to include all activities that ME/CFS sufferers find challenging, for example washing dishes and clothes, and account for the all-encompassing affect of an illness where one activity robs the energy available for others.
    4. Assessment should be carried out by someone with specialist training in ME/CFS or based on advice from a trained healthcare professional in that area.
  3. Fitness-for-work assessments do not consider the highly variable nature of ME/CFS. It is rare for a sufferer to find a work rôle where huge variation in cognitive and physical capacities can be accommodated.
  4. Applicants should be allowed more time to prepare responses. Telephone helplines should be made more user-friendly and incorporate ring-back facilities. Online chat and/or email support alternatives should also be available.
  5. Shorten DWP/assessor response times substantially.
  6. Improve third-party support for claimants during the process.
  7. The DWP/assessor guidelines for dealing with ME/CFS bear little relation to actual practice, which makes no significant concessions to the illness. The PR spin needs to be turned into reality, and the DWP needs to make far more effort to engage with sufferers and their representatives.

 

Answers to questions

 

Suitability of assessments

 

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

DWP could and should work with stakeholders (including unwell and disabled people) better to design and implement assessments that -

- properly allow claimants to describe the impact of their conditions on their capabilities

- support claimants practically and financially during the claims process

- streamline the process of applying – long waits for call centres and long complex forms that often need time and concentration to tackle are very taxing for the ill. Being well enough to handle the process, and to access help like Citizen’s Advice Bureau to figure out how to answer “correctly”, should not be a factor in successful claims.

- streamline the evidence gathering process. Reports from GPs, consultants etc. should be automatically asked for by the DWP, with copies sent to the claimant for comment/correction. Asking ill people to chase medical professionals for routine information is stressful, time consuming and inefficient.

- recognise that the initial application will be made at a time of great stress, confusion and adaptation to new circumstances by the claimant. Making simple statements like “I am unable to bathe and dress myself” is likely difficult to admit as, if faced, may prompt grieving for lost life opportunities.


The forms for ESA & PIP should have a tick box section at the end where the claimant can pick which formats are suitable for them and tick all that apply out of: assessment at a centre, assessment at their home, telephone assessment or video assessment. The default should be to accept the request unless the DWP has good reason to say what has been requested is unsuitable – for example if the claimant has only ever had telephone assessments for 10 years, the DWP might make a case that they need to be seen. Most of the time it should be what is easiest for a really sick person as default. This would remove the extra barrier of having to request evidence and being on the phone for ages to try and change the assessment from the default in person at a centre.

The assessors should only ask the claimant questions at the assessments that have not already been answered in the forms they have submitted. If the claimant has answered the question thoroughly on paper, it should just be a quick clarification and then move on. This would cut down the length of the assessments; they can be up to 3 hours long if a person has multiple conditions, which is impractical for those with energy limiting chronic illness.

It is unclear, and often the basis of many appeals, that the assessor will conclude that the claimant is capable of an activity because of their own observations and guesses about how a condition affects someone. This is especially an issue in variable and energy-limiting illnesses – as being able to stand up, once, in an assessment room has little or no bearing on the ability to stand up to cook a meal, walk, catch a bus etc. Nor does it account that standing up may take energy away from other activities –witnessing an applicant stand up may affect their ability to think clearly, drive, or cook a meal later – but this is the reality of living with energy-limiting conditions like ME.

It is very distressing to have someone else report that they believe a claimant is capable of doing something that the claimant has everyday experience and evidence for not being able to do reliably or repeatedly. Again, seeing an activity once should not overrule the testimony of the lived experience of the claimant.

Paper-based assessments should be used more often, particularly for repeat reassessments, and for those who have provided a lot of evidence, as well as for those with mental health conditions who find the face-to-face assessments anxiety inducing.

Longer awards should be given for conditions that are incurable and/or slow to change in fundamental ways. At the moment, many invisible chronic illnesses only receive repeated short awards because their condition is variable. Conditions like ME/CFS can have a relapsing remitting pattern for some sufferers, typically lasting 5-10 years. Yet ME/CFS suffers are typically submitted to frequent reassessments, often every 1-2 years. This is a waste of money, and waste of really sick people’s precious energy. It is also extremely stressful and many with ME/CFS feel themselves trapped in a continuous cycle of energy-draining applications and attempts to recover in between. It can be seriously detrimental to their health.

 

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

The introduction of remote assessments during lockdown has been very welcome. In addition to reducing the need to travel to assessments (with planning for help, travel, parking etc.), telephone assessments have also eliminated the waiting room ordeal – where claimants could be left “waiting on chairs” for up to an hour. For people with ME this will exhaust them even before interview commences. Telephone and remote assessments have reduced this issue significantly.

People with ME/CFS often have no energy left after basic activities such as washing, getting dressed and travelling and so the effort and stress involved in attending assessments is often exhausting. This can cause serious worsening of symptoms which can take days or weeks to recover from, and will compromise their ability to care for themselves.

 

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?

We don’t have any awareness of such except reports of experiments with universal income to provide a guaranteed safety net for all. This would be an enormous benefit to people with ME/CFS. It would get rid of the cost in energy and health that the (for them) terribly gruelling process of application entails.

 

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

ME/CFS is a highly variable condition, from day to day and even over the course of a day. Sufferers may be able to walk to the shops one day but have difficulty standing upright on another. People with ME/CFS suffer from 'post-exertional malaise': their symptoms worsen 24-48 hours after exertion and take days or weeks to return to normal. It does not follow that if a person with ME/CFS can carry out an activity once, they can then do so again repeatedly or reliably either that day or on future days. 

The descriptors do not take this into account and are not fit for assessing people with ME/CFS. They need to be extended to take three aspects of this (and other energy-limiting illnesses like long COVID) into account: the severe limit on rate of energy expenditure; very large variability from day to day; and the after-effects of exertion.

Rate of energy expenditure:

The criteria only look at whether you can do each task on its own, not at the combined effect. If someone can cook a meal some days and shower other days but cannot do both on the same day, there is no way to account for this. There should be additional questions about being able to do all the tasks combined like you would in real life, not just whether you can do each one on its own. People with energy limiting chronic illness often have to alternate which day they cook and which day they shower and which day they do other tasks, in order to manage themselves across the week, particularly if they are living alone and do not get support. Unlike with ESA where there is regulation 29 & 35, there is no option for overriding it when someone in theory can do the tasks the majority of the time, but is unable to maintain a basic quality of life and is putting their health at risk of worsening when they do them.

Day to day variability:

Assessments decide whether an applicant can or cannot cook unaided, wash themselves unaided, and so on. Typically, an ME/CFS sufferer will be able to do more tasks on some days and far fewer on others. They may be able to be active for up to four hours one day and unable to sit or stand for more than a few minutes the next. There needs to be explicit means of recording this in the descriptors.

After-effects of exertion:

Similarly, there is no way of recording the consequences of doing these tasks. At the moment, someone who is a full-time wheelchair user but has no limitations on their energy can be entitled to enhanced mobility and standard daily living as they cannot walk and will need adaptations, but can also work full time in some roles. But someone with an energy limiting condition may be able to do the daily living tasks and therefore not be eligible for PIP but literally nothing else at all that day. By introducing a specific criteria where points are awarded if by doing the other tasks the claimant is reduced in their ability to work/study/parent/leave the house, this would mean that people with milder ME/CFS would be able to claim standard daily living whilst working part time, rather than waiting until their health declines and they become moderate and have to give up work and start to struggle with the daily living tasks. It was also mean that people with moderate ME/CFS who are unable to work may get these points alongside other points for aids for example, and therefore be entitled to enhanced daily living at that level, rather than waiting till their ME/CFS becomes severe and they are housebound and needing help with those tasks.

The mobility element has criteria which is too strict to be fit for purpose. If the claimant cannot walk to your nearest bus stop, and cannot walk or cycle anywhere, then mobility is only possible by driving a car or paying for taxis. This is an additional cost of being disabled which is what PIP is meant to cover, but in this case, does not. It is suggested that the mobility criteria should be much wider so that anyone who cannot walk say 500 metres (which would be a bus stop or local shop in most cases) and anyone who cannot walk 50 metres (and so cannot cover the distance between a disabled parking space and the store, office or destination) would be entitled an enhanced mobility award.

There are also several key tasks missing from the daily living criteria. Additional categories should be added for washing dishes (e.g. 2 points for being able to only use a dishwasher or needing a perching stool, 4 points for not being able to do it at all) and washing clothes (e.g. 2 points for being able to put washing on but not do ironing or put washing on but not hang out to dry so needing a tumble dryer, 4 points for not being able to wash clothes at all) and cleaning (2 points for not being able to do heavy cleaning like vacuuming or not being able to do high up cleaning e.g. a full time wheelchair user, or person with dwarfism, and 4 points for not being able to do any cleaning). Each of these is an essential living task, but not measured at present. This would more accurately reflect the challenges faced by people who have the “additional costs of being disabled” which is what it was meant to be for. This would lift many disabled people out of poverty and help them pay for the support they need.


At the moment, there is a gap which people fall into where they are too ill/disabled to walk or cycle everywhere so they need to run a car, but not ill/disabled enough to get PIP. So, they have the extra cost but not the extra income. And they need to pay a cleaner, a gardener, delivery fees, but they don’t get enough points for a daily living award. For people with energy limiting chronic illness, this is often the point where they are only able to work part time, and so are not earning even a living wage but have all these extra outgoings – and the choice becomes work part time but needs domestic help, or do not work at all in order to cope with daily chores alone. PIP is in theory a benefit that can be claimed in work, but this is impossible for someone with an energy limiting disability as they often only meet the criteria currently when they have no energy left for work. Broadening the criteria would have a real impact in the disability employment gap and keep people in part time work for longer.

The descriptors for “Communicating verbally”, “Reading and understanding signs, symbols and words”, “Engaging with other people face to face” and “Making budgeting decisions” are not fit for purpose as they only take into account certain conditions, for example severe learning difficulties and mental health issues. People with ME/CFS suffer cognitive dysfunction and very quickly lose the ability to communicate effectively, read and write, and add up. There needs to be criteria that take this into account.

This is especially important for safety as, for example, becoming tired from an activity like working or shopping can mean a significant impairment from brain fog where simple life tasks are forgotten or overlooked. For example, the simple safety procedures when crossing the road can become very difficult – e.g. remembering to look for traffic, moving at sufficient speed at a crossing, not stumbling or tripping in the road. These are obviously capabilities that are essential at the worst points in health but may not typically be an issue. They could easily be assessed by asking about dangerous situations that have occurred, - not just crossing the road but forgetfulness during cooking, overlooking dangerous situations, handling a stranger knocking on the door safely. There is likely much overlap with assessing vulnerability in early stage dementia where being safe 90% of the time is not a good measure of overall safety.

 

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

Because ME/CFS is a highly variable condition, most people with ME/CFS cannot reliably undertake a work role. Those that are well enough to work on some days are likely to have other days or even weeks at a time when they cannot function. The reality is that very few places of work or self-employed roles are able to accommodate such an unpredictable work pattern but the ESA descriptors fail to take account of this. They attempt to quantitively assess a claimant’s ability to function at a given moment in time and assume that degree of functioning can be sustained over the course of repeated working days. There is a difference between sometimes well enough to perform a task (and so do it when able), and well enough to perform a task on a predictable schedule. Many people with ME/CFS struggle with work schedules, meetings or deadlines because “I can do that once a week” is not the same as “I can do that for every Wednesday meeting”. There is a surprisingly large gap in health capability difference between those two situations – as the second requires a relatively high level of functioning on the worst days. It is therefore very hard for most people with ME/CFS to select a descriptor without feeling that they are misrepresenting their ability.

Claimants should be asked about the variability of their functioning over time. Decision making should fully take into account and give weight to these descriptions.

The criteria for limited capability to work is not set up for variable conditions that cause pain, fatigue, injury, brain fog, or other symptoms after minimal activity. The wording around being able to do a task “reliably and repeatedly” is often not applied correctly and is not clearly communicated to claimants. Similarly, regulation 29 and 35 are not clearly explained on the ESA/UC50 form. There should be more room for a claimant to state how they might be able to lift up their arm or pick something up once or twice, but putting away shopping that requires doing this action repeatedly for some minutes might be unmanageable due to fatigue, and where persevering may cause a flare in symptoms requiring extended rest. This limitation would obviously rule out jobs stacking supermarket shelves, but the current assessment criteria often miss such obvious limitations.

An additional section to the ESA/UC50 form to specifically explain issues around doing tasks reliably and repeatedly, and the consequences of doing tasks for long periods of time, would make the criteria work better for people with energy limiting chronic illness.

Also, the current system does not work for those working part time with energy limiting chronic illness. For those who do not have children, they have to pass the work capability assessment in order to get the work allowance. But for those with an energy disability, the point where they can do no work at all is when they meet the criteria. But when they can work 5, 10 15, 20 hours a week they are significantly worse off as they do not get any benefits topping up their wage as they do not meet the very strict criteria of the work capability assessment. A living wage is only a living wage for full time hours; the benefits system should top up those who have a lifelong limited ability to the equivalent to the full-time minimum wage. People with lifelong incurable conditions could be awarded limited capability for work for life, only to be reassessed every decade or so in case new treatments have been found. This would mean that those who could work a little would not end up worse off in part time work than on benefits because they would get the work allowance and the taper rate.

The criteria for “Learning Tasks”, “Awareness of everyday hazards”, “Initiating and completing personal action", "Coping with change”, “Getting about” and “Coping with social engagement” only take into account the effect of mental health and learning disabilities on these tasks. They do not take into account how brain fog, fatigue, and post exertional malaise can significantly affect the ability of a person to carry out these tasks reliably and repeatedly. The guidance should be changed so that assessors are actively told to look at how the ability to complete these tasks are affected by these symptoms too, which can be very disabling to people with ME/CFS and other energy limiting chronic illness.

 

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?

 

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?

Paper based assessments could help a lot of people with ME/CFS because it would allow them to provide supporting evidence with their initial claim rather than having to wait until their claim is turned down because they do not 'fit' the descriptors. It would allow them to present evidence of how ME/CFS affects their functioning capabilities over a longer period of time, which is vitally important for such a variable condition.

One drawback is that some health care professionals charge for providing evidence. A ruling should be made that prevents this from happening, or better the DWP should compel health professionals to supply reports when requested, which patients receive a copy of to comment on. This approach could streamline the system and save the extra work of making patients make the requests.

Though the DWP says it often requests information from clinicians, it seems they are rarely provided with a report – this obviously needs to change. If reports are automatically copied to the claimant, they could be alert to which reports have not been provided.

 

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?

If this approach was followed, there should be a way where if a clinician can tell that the claimant clearly meets the criteria, they can submit a quick form to DWP explaining that this person qualifies for PIP/ESA and then they can just get a fast-tracked paper-based assessment rather than a face to face assessment.

There is a problem with poor education of healthcare professionals in ME/CFS. GPs often know little about it, and assessors typically appear to be no better informed. Some improvement might be gained by allowing an applicant to find and nominate a healthcare professional with specific training in ME/CFS to provide an assessment. Nevertheless, if at all possible, input from a clinician named by the patient would still be a good option.

There would need to be systems in place so as not to disadvantage those who do not have supportive doctors, or whose GPs have very little understanding of their condition, or who have no specialists because there is no treatment available for their condition until more scientific research is undertaken. The clinician input method should be an additional simplified pathway for claiming, not replacing the existing system else those with poor medical care like those with ME/CFS will be unintentionally penalised.

 

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

Assessors should provide an honest and accurate account of interviews to the DWP. We suspect they are under strong institutional pressure to minimise health problems and disabilities. This must cease.

Comments in assessors reports saying that the person “looked well”, “didn’t look tired” or “didn’t look like they were in pain” are inappropriate and possibly should be banned. These judgements display absolute ignorance around invisible illness, which is by its nature invisible. Assessors should at least have the basic common sense and decency to know that you cannot see pain or fatigue; only the effects of it if you really know where to look. This occurs despite both Maximus and IAS (the assessors here in Cambs) claiming that their assessors are trained to deal with ME/CFS.

In the experience of our members with ME/CFS, assessors frequently understate the extent of disability they report. Many members say that the assessor misrepresented their responses at interview. We have both been witness directly to such incidents when attending to support a claimant; the assessor has submitted a response that in no way reflects what was discussed or was evident in the assessment where we are a witness but with no vested interest. This is much more the rule than the exception, and causes significant anger, frustration and distrust between the claimants and assessors (and DWP). It also results in many claims being initially rejected which are later accepted on the basis of more accurate observations and information, but not before causing significant, unnecessary stress, anxiety, energy expenditure and cost in the ongoing process of appeals.

It might help to be able to insist on a specialist assessor who has medical training in ME/CFS. This would mean rather than seeing people with ME/CFS (and comorbid conditions) only occasionally, specialists could become much more familiar with a few illnesses and their common effects on ability to work, or basic self care. This seems an obvious way to improve assessment which for some reason seems to be resisted by DWP/assessment providers.

It is clear that application forms which employ multiple choice descriptors are not a fair means of assessing a highly variable illness such as ME/CFS. Nor is a single meeting with an assessor likely to produce an accurate report of how a claimant's illness or disability affects their daily life or their ability to maintain work. Appeals are often more successful because claimants have the opportunity to provide evidence from clinicians and others who support them and who have a much better knowledge of how their illness or disability affects their functioning on a day-to-day basis.

The mandatory reconsideration (MR) process often seems weighted against claimants, in part because of a lack of information about how it works and what claimants’ rights are. Full and detailed information about the process must be provided, for example, making claimants aware that a MR can now be submitted in writing. Cognitive impairment is a symptom of ME/CFS and people with ME/CFS often do not represent themselves well in oral conversations as a result. People with ME/CFS would benefit from more time to gather supporting evidence and/or get help to submit their MR.

 

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

A simple change to telephone helplines could make a big improvement in communication. Include announcements of position in telephone queue and estimated time to reach an advisor; offer the alternative of a ringback if waiting time exceeds 15 minutes. People with ME/CFS have very limited energies and prolonged waits can cause excessive impacts on health and self-care. Email and online chat should also be options for contact – they are simple, time efficient and effective.

More time could be allowed between beginning the process of applying and submitting the application. For example, there is an arbitrary 28 day deadline for PIP, which is very short for people with moderate or severe ME/CFS. However, the only option to extend the time is by making a phone call, often being left on hold for an hour before getting through to an operator. If someone is struggling to fill in a form with all their spare energy over a month, mandating a phone call to extend that deadline is counterproductive and damaging to health.

Funds could be given to impartial third party organisations that would enable them to help more claimants with their applications. This would be very welcome to people with ME/CFS who struggle with cognitive fatigue in addition to the problems that they have answering questions unsuited to the nature of their illness.

Assessments could be made more transparent by routinely providing claimants with audio or visual recordings of their assessments and allowing them to select which they would prefer.
 

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

Potentially, yes. Having a single assessment would certainly be welcomed by our members for whom assessments are physically and cognitively exhausting and stressful, often resulting in lengthy recovery periods for their physical and mental health. There is much duplication between the processes – and eliminating that would be beneficial to all parties – for example, information on contact details, health and capability, and the assessment interview.

However, there are strong concerns that such a merging might be used to cut eligibility to some benefits.  For example, PIP is not means tested but UC is – combining the form should not lead to PIP becoming means tested as well. 

Combining would produce an “all or nothing” situation; it should not be instituted unless the safeguards described above are implemented so that ME/CFS sufferers do not stand to lose everything from a single bad assessment.

There continue to be major concerns that disability benefits depend on the living circumstances and income of any co-habiting partner – the impact of this can mean that disabled people are more hesitant about moving in, getting married etc. as they lose most independent means. This also makes breaking or dissolving a relationship additionally stressful as the benefits system puts their financial security in jeopardy – leaving an abusive partner should not be dependent upon or have to wait until a benefits assessment has been made. Any combining of benefits processes must safeguard existing rights.

 

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

Our members are pleased that the government is looking seriously at reforming the provision and assessment of health and disability benefits but we feel that the green paper is largely a missed opportunity. It does not do enough to address the reasons why our members are struggling through a long and draining claim process, frequently getting turned down and then being put through an even longer and more draining reconsideration and appeal, all the while suffering health, financial and emotional harm.

We would have liked to see an assessment process that recognises ME/CFS claimants as experts in their own conditions, gives them the opportunity to properly describe their functional capabilities and treats their accounts as primary evidence.

 

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

Yes very definitely, especially if chat, email and message based services are incorporated into the facility and the current process of phone calls often means long waits to perform simple changes or checks to applications. It also improves accessibility as many people with ME/CFS struggle with verbal communication on the phone. However, it should not be mandatory as other people have issues with processing written information, typing, screen use etc. Also, basic access to the internet at home is not a given, so alternatives must be kept available.

It would be useful if you could upload your evidence for one benefit, and then if you apply for another or be reassessed for that benefit even a couple of years later, you could select online to add which of the documents you’ve uploaded previously to this current claim/reassessment, rather than having to upload 100 pages every year for each benefit separately. Similarly, it would be beneficial if the system would show the answers written previously for that question to save time and effort duplicating previous accounts. Currently many claimants do this by updating word documents from previous claims, so having an online secure version of this would make it easier.

It would be beneficial if there was a status view of the applications online, saving long energy-draining phone calls to track progress.

There should be easy options to log in and change an address, phone number or bank account details at any time, not just during an assessment process, so these tasks also need not be done via phone.

 

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?

At present our members report that assessment reports are often highly inaccurate if not downright dishonest. There is clearly a need to improve this situation and if contractors cannot or will not improve then bringing assessments in house may be a solution. However, there is also a very real fear among our members that a seeming unwillingness to believe claimants' accounts is also prevalent at DWP and so it is not clear that bringing assessments in house would automatically lead to improvement.

We suggest that whether in house or not, DWP aims to increase trust by improving transparency and considering how to make the assessment process appear less weighted against claimants' interests. For example:

- Providing information in advance about what will be asked of claimants during their assessments and why the information is needed beyond the written submission.

- Making it part of the assessor’s role to gather appropriate evidence and inviting claimants to provide evidence if they wish to.

- Routinely providing audio or visual recordings of assessments and allowing claimants to select which recording method they would prefer.

- Routinely providing copies of assessment reports which must include consideration of all evidence supplied and, especially if the evidence is not accepted, a full explanation of the conclusion reached.

- Introducing transparent and impartial monitoring of assessments, making use of recorded evidence. Assessors must be held to account if they cannot demonstrate adequate understanding, knowledge and skills.

 

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?

The adaptions that the department made were welcome. People with ME/CFS have great difficulty getting to appointments and assessments even when there are no restrictions in place but failure to do so can result in having their claim process stopped. Creating a flexible claim process that is better suited to the needs of individual claimants would be a valuable gain.

E.g. more use of paper-based claims without the high energy expenditure that an interview requires and that may exacerbate the illness. Remote assessments are intermediate but still offer a very important energy saving. In addition, an interruptible, recorded chat facility via the DWP website (where the applicant can break off and come back hours or days later) would be helpful.

As in above answers, telephone and video-based assessments should be offered to all as well as home based and assessment centre-based assessments, and the claimant should be able to select which options are accessible for them on their form, not have to phone up and request it specially. The DWP should only be able to request a different assessment format if they have specific reasons for doing so. This should be the exception not the norm.

 

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

Definitely for ME/CFS for the reasons given above. They are less likely to worsen the illness.

 

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

We have no view on IIDB.

 

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?

 

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?

 

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?

Remove the arbitrary deadline of 28 days from requesting an application form to having to return it. It is an unnecessary and unrealistic time constraint, which, is someone is struggling to meet is hardly likely to be improved by having to wait for an hour on the phone system to request an extension.

We understand there are plans to fund third-party organisations (e.g. Citizens’ Advice Bureau) to provide support for applicants. Provided this is arms-length (i.e. CAB is not pressured to provide support in any particular way) this support would be welcome. It should be available online, by video or by phone.

Our members greatly value assistance with applications because they often have very low cognitive capability and fast become incapacitated trying to complete claim forms. Third party organisations also support claimants by helping to explain the complex benefit structures and processes. It is possible that there might be less need for this if access to advisers at DWP were improved. At present claimants can be waiting on the telephone for the best part of an hour. It is very likely that there would be less likely for assistance if the application was more suited to claimants conditions.

However, as noted previously, the application and assessment system needs to be improved sufficiently that a claimant with ME/CFS can navigate it themselves without having to call on assistance, if for any reason they cannot or do not wish to.

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

Increased financial support for fully impartial organisations (such as the Citizens Advice Bureau) would be very welcome. People with ME/CFS have considerable difficulty with cognitive impairment and often struggle to complete their applications without support. Proper funding of third party organisations is essential to their ability to carry out a service in a way that is fully accessible to all claimants regardless of where they live or what their disabilities are.

Legal aid should also be reinstated for appealing health and disability benefits.

The re-introduction of dedicated telephone lines as well as email and online chat support for third sector use would be very helpful. It would greatly speed up the time that advisors and advocates spend waiting on the phone to speak to the Department about their client's claims and would allow them to help more claimants.

 

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?

Support for claimants is key. Support needs to be effective, professional, and clearly independent of the DWP and its contractors.

We would also strongly support efforts to increase trust by making the application and appeal processes more transparent and more accountable. We would also strongly support continued payment of benefit during MR given that the alternative is for claimants to make themselves available for work that they are not well enough to do. We are all too familiar with the harm that is done when people with ME/CFS are forced to push themselves beyond their capabilities.


Make the time for claimants to proceed with the application longer or more easily flexible and decrease the delays and decision period from the DWP. It often takes 6 months or more from starting an application to receiving the benefit, and if an appeal is needed it can be more than a year. This prolonged uncertainty puts a massive strain on people already dealing with serious health issues. The many months waiting around to hear what the decision that affects all or some of your income, is extremely stressful and not good for anyone’s mental health. The DWP need more staff to get things done quicker.

 

Waits for assessments

 

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

Employ more staff. Give people longer awards so they are only assessed less often to free up more assessors’ hours. Combine and streamline assessments for PIP, ESA, UC so only one assessment is needed rather than two and do more paper-based assessments.

 

a. 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?

Not at all. The support group rate for ESA and LCWRA rate for UC should be backdated to day 1, not after the first 3 months. The WRA or LCW rate that was scraped in April 2017 should be reintroduced as new rates leave a lot of chronically ill and disabled people in poverty. Assessments should be taking place a lot quicker so that people are not on the assessment rate for as long. And the extra £20 a week bought in during Covid should be made permanent, and applied to legacy benefits, Contribution Based & New Style ESA, and backdated. The alternatives offered by the government of changing the taper rate and increasing the minimum wage are good, but have no effect on the 60% of UC claimants who are unable to work, as well as those unable to work on legacy benefits.

 

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?

We have no view of the Scottish Approach, so hold no opinion as yet.

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?
 

Poorly. When we have tried to engage with them, what they say they do is totally different from the experiences of our group in reality. The policies often sound reasonable, the guidelines quite well considered, but it often feels more like PR spin and placation than the actual experience of people with ME/CFS in the benefits system. Disabled and chronically ill people need real systemic change to the benefits system and its outdated attitudes towards invisible physical disabilities, not just a box ticking illusion of engagement. They need to implement significant training on all common chronic illnesses for assessors and decision makers, regularly engage with local organisations, and actually admit when things have gone wrong and make changes in the future, rather than deny what is happening.

 

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

The Department could and should make far greater attempts to consult with unwell and disabled people about policy and operations on a regular basis. Our members would welcome recognition of the expertise that their first hand experience gives them and the invaluable contribution that they can make to shaping policy and practice.

 

November 2021