Written evidence from Sheffield ME and Fibromyalgia Group (HAB0019)


Background to the organisation submitting


Sheffield ME and Fibromyalgia Group supports people across South Yorkshire and North East Derbyshire living with the chronic illnesses ME (myalgic encephalomyelitis, also known as chronic fatigue syndrome) and fibromyalgia. We also support people experiencing chronic fatigue as a result of long covid. We provide members with a welfare benefits advice and advocacy service, supporting people from knowing what to claim and how, through to representation at the First Tier Tribunal.


1. How could DWP improve the quality of assessments for health-related benefits? Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?


1a. Suggestions:

        Giving claimants the option for remote assessments

        Giving claimants the option to split their assessment

        Improving access to advocacy

        Inclusion of more detail about how the decision was made in the award letter

        Giving assessors and decision makers the option to flag where there are gaps in evidence relating to individual cases


1b. The negative impacts of attending assessments on our members’ mental and physical wellbeing has been reduced by the use of telephone assessments during the pandemic. While the emotional impact does still seem to be present, with members still reporting anxiety and lack of sleep prior to an assessment, the physical impact is much reduced. We find that, when attending in person assessments, claimants often feel pressured to get washed and dressed, when these might not be activities they would usually do; telephone assessments mean claimants may be less likely to experience this pressure, again reducing the physical impact. Moving forward, having the option to attend a telephone interview rather than an in person interview would be welcome.


1c. One issue which has not been resolved by telephone assessments is the lack of an option to split the assessment into parts. People living with chronic fatigue need to manage both their mental and physical exertion in order to avoid an exacerbation of their symptoms. For many of our members, taking a 1-2 hour call is exhausting and will have lasting effects. For example, I supported a member on a telephone PIP assessment who fell asleep during the assessment, and was not able to be roused for several minutes. Following the assessment she needed to rest in bed for the remainder of the day. As well as the impact on the claimant, this also meant that the assessor had to rush through the remainder of the questions, and likely meant that the claimant was less able to provide good quality evidence. We find that, when compared to first tier tribunal hearings, assessors are less likely to offer or grant breaks, perhaps due to time constraints. When assessment is required, the impact could be mitigated by giving claimants the option of having their assessment split across 2 days.


1d. A further issue we regularly come across is with errors, omissions and assumptions made in the assessment reports. For example, we supported a client to challenge a decision regarding her PIP, which had been reduced following reassessment. The reasoning behind the reduced award was that the client stated at the assessment that she could walk from her living room to her car, using a stick, and this would take about 2 minutes. The assessor made the assumption that this distance was between 20-50 metres, when, in fact, the distance was around 5 metres. The client’s previous level of award was reinstated after this was challenged. 


1e. For claimants who do not have advice and advocacy support, it is much less likely that they will pick up on these errors. The assessment reports containing the full explanation of the decision are not routinely sent to claimants, but rather need to be requested. The decision letters routinely sent often do not contain details about the evidence used to make the decision. Furthermore, the full assessment reports are often around 30 pages long, and many claimants may not have the capability or capacity to read them and respond to any errors. This points to the value of signposting to advice and advocacy services, especially in order to help claimants decide whether to challenge a decision, and to understand how to challenge the decision.


1f. It could also be beneficial to include a more detailed description of the evidence used to make an award in the award letter. This would mean greater transparency, which could increase trust between claimants and the DWP. This could also make it easier for claimants to decide whether to challenge the decision. We often find that claimants will be reluctant to challenge the decision if they are awarded any rate of benefit, stating that they ‘are happy with something’ or ‘don’t want to appear greedy’, even if they feel that they have a strong claim for a higher rate. Improving claimant understanding of how disability benefits are assessed could help them identify whether an appropriate award has been made. This could also shorten the process for challenging benefit decisions, as it cuts out the step of waiting for the DWP to send the full assessment report.


1g. When reading through assessment reports, it appears that assessors often come to a decision when further evidence is clearly required. For example, I supported a client who, in her PIP2 form and telephone assessment, stated that she had pain levels of 8 out of 10 daily, caused by fibromyalgia and sciatica, which limited her ability to carry out activities of daily living. She was taking naproxen and amitriptyline for pain. The assessor concluded that the level of restriction reported in the PIP2 and at the telephone assessment was not in line with the level of pain medication prescribed. The client was not awarded PIP. We challenged the decision, but it was not changed. We then submitted an appeal to the First Tier Tribunal. The claimant was then contacted for further evidence relating to her pain and pain medication. She was able to provide further information which led to an award of PIP being made. In the assessment report it was clear that the written and oral evidence given by the claimant, and the medication prescribed, did not corroborate one another. If this gap in the evidence was flagged, either by the assessor or DWP decision maker, before the initial decision was made, rather than at the appeal stage, a correct award could have been made at the initial decision.


1h. Where there is no current specialist input, and the claimant’s GP is not able to provide evidence, the DWP often requests a copy of the claimant’s medical records. However, this often happens further down the line, for example when the claimant challenges a decision. If medical records are often useful in decision making, these could be more widely requested early on. This would also put less pressure on claimants to request supporting letters from health professionals, which would be beneficial as there is often a cost attached to supporting letters.


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


2a. Suggestions:

        Combined assessments for work and non-work related health and disability benefits


2b. The separation of assessments for PIP and work capability is an issue for many of the people we support. While claimants with chronic fatigue may be able to carry out activities of daily living or work related activity, this does not mean that they can do both. For example, I supported a client to claim PIP who was working 30 hours per week. This meant that he did not have the energy to carry out many of the PIP activities. However, the client’s ability to work, albeit with significant reasonable adjustments, was taken as indication that he was able to carry out the PIP activities, when, in fact, it was the very reason that he struggled with these activities. One benefit of a combined assessment would be more clarity regarding how working affects PIP entitlement, and a more holistic perspective on a person’s life and support needs.


2c. The addition of household chores to the PIP activities would give a better assessment of a claimant’s ability to manage daily life. Limitations on keeping their home to an acceptable standard is often an issue brought up by claimants and their carers. It is also a question often asked by the assessor when obtaining a social occupational history. In addition, this would be covered in a social care needs assessment.


2d. Under PIP activity 5, managing toilet needs and incontinence, more clarity is needed regarding whether getting to the toilet in time is considered. In CPIP/449/2016 paragraphs 18 and 19,  the judge remarks that the SoS’s position that mobility difficulties can never be relevant to managing toilet needs and incontinence is problematic. The judge notes that, for people with a condition which impairs control over the bladder/bowel, and who also have restricted mobility which will make this difficult to manage, these mobility issues should be taken into account. However, in the PIP2 form, the question on managing toilet needs and incontinence still includes the line ‘this doesn’t include difficulties you have getting to the bathroom’. This is a common problem for the people we support, who often have IBS as a symptom of their ME/CFS or fibromyalgia, and also have issues with mobility.


3. 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?

3a. Suggestions:

        For the DWP to contact an expert in the claimant’s condition, or the claimant’s GP, for further evidence when this is required


3b. One issue which many of our members find when seeking medical evidence to support benefit claims is that people who have been living with ME/CFS or fibromyalgia for a number of years are usually GP managed. Unless they have had any change in symptoms, or have other health conditions which need medical attention, they may not regularly see their GP. Furthermore, the move away from having one ‘family doctor’ means that claimants might see several different GPs at their surgery. In these cases, a GP would not be able to provide much more useful evidence than what is available in the claimant’s medical records. While medical records in these situations may be useful, decision makers could also make use of informal or formal carers, and allied health professionals, who are more likely to have frequent contact with the claimant.


3c. Health professionals may be useful to gather specific clarifications or evidence once the PIP2, assessment report and any pre-existing medical evidence has been considered. For example, in the case I outlined in 1g, prior to the decision being made the DWP could have contacted the claimant’s GP to discuss the reasons behind the mediation prescribed.


3d. It may also be appropriate in some cases for decision makers to consult with health professionals about common treatment pathways. For example, assessment reports often give ‘lack of specialist input’ as a reason why reported restrictions are not backed by evidence. This is particularly problematic for people living with chronic conditions; Many of our members with ME/CFS will be diagnosed by their GP, be referred to the specialist ME/CFS clinic, recieve any appropriate therapies, then will return to the care of their GP, and be GP managed for many years.


4. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that? What could DWP change earlier in the process to ensure that fewer cases go to appeal?


4a. Suggestions:

        The DWP should contact claimants or health professionals to gather more evidence when this is required 

        The DWP should signpost claimants to advocacy services as early in the claim as possible


4b. In cases where there are gaps in the available evidence, the DWP should contact claimants or health professionals to gather more evidence as early as possible to see if an award can be made before an appeal is lodged.


4c. Signposting claimants to advocacy services as soon as possible will also allow claimants to provide better evidence in the early stages of their claim. We find that claimants who fill in their PIP2, ESA50 or UC50 forms on their own often do not include the level of detail required for a decision maker to assess their claim. Enabling claimants to provide better evidence at this stage could allow for a reduction in assessments.


4d. One of the reasons for the high success rates at the tribunal stage may be that the quality of oral testimony provided is higher than at assessments. This is because the tribunal panel are able to focus their questioning on key issues, allowing them to gather a greater level of detail. I appreciate that one of the purposes of in-person assessments is to use oral testimony to corroborate the information provided on the PIP2. However, considering the pressure this puts on the claimant, it may be more appropriate to corroborate the claimant’s evidence using other sources such as medical records, health professionals, support workers or informal carers where possible.


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


5a. Suggestions:

        Giving claimants the option of having remote assessments


5b. As previously mentioned, giving claimants the option to attend a remote assessment has significantly reduced the stress and anxiety related to claiming..


5c. We have also seen a welcome increase, during the pandemic, of PIP and ESA reviews being decided on paper. However, we have still supported clients who, after stating that there had been no change to their symptoms or support needs since their last assessment, were still invited to a face-to-face. In these circumstances, it should be made clear to the claimant what further evidence is being sought.


6. 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?


6a Suggestions:

        Introduction of a ‘grace period’ when a benefit award changes


6b. We have found that the move to remote assessments has significantly reduced the mental and physical effects of claiming PIP or ESA. In future, claimants should have the option to attend an assessment remotely.


6c. The introduction of a ‘grace period’ noted in the Health and Disability Green Paper, where disability benefits would have a run-on period to allow claimants to budget for any loss in income, would be very beneficial to claimants. For PIP in particular, loss of the benefit may have an effect on the Severe Disability Premium, a Carer’s Allowance claim, a Blue Badge and social care support.


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


7a. Suggestions:

        Increasing the use of paper assessments

        Introduction of an assessment rate

        Routinely recommending that claimants copy or photograph any forms and evidence they send in

        Giving claimants the option to submit paperwork electronically


7b. Increased use of paper assessments would decrease wait times, by freeing up assessment slots at assessment centres. This could be paired with more proactive evidence seeking by the DWP. For example, the DWP could contact a carer or the claimant’s GP to corroborate PIP2 testimony, rather than requiring them to attend an assessment.


7c. The introduction of an assessment rate for PIP would be very welcome. I find that, in the majority of cases, during the waiting period while their PIP claim is assessed, our members will go without the kinds of support which PIP is designed to help pay for. This can have a negative effect on the claimant’s health and wellbeing. For example, I supported a member who lives on her own and struggles to keep her home clean and tidy. One of the reasons she claimed PIP was to be able to pay for a cleaner. During the timing time for her PIP to be decided, her home became very dirty and disordered, which had a negative impact on her mental health, and her ability to manage her claim, as she struggled to find paperwork. Usually, in scenarios like this, I would look to charitable organisations to see if the member could access any grants. However, when a PIP claim is in process, this makes it less likely that a grant will be awarded.


7d. We find that paperwork getting lost is very common. Claimants should be routinely recommended to scan or photograph forms and evidence so that they can quickly re-send paperwork if this occurs.


7e. Having the option to submit forms and further evidence electronically would also speed up the process. For our members who live on their own, they will often have to wait until they are well enough to go and post forms or letters. This has especially been a problem during the pandemic when people living on their own have had less access to informal support, and less access to services like libraries for help with printing.



October 2021