Written evidence submitted by Epilepsy Action and Epilepsy Society (WCA0110)
About this submission
This submission is from Epilepsy Action and Epilepsy Society, the UK’s two leading charities representing over half a million people with epilepsy in the UK.
Our submission draws upon several pieces of evidence:
The effectiveness of the WCA in indicating whether claimants are fit for work
The following headlines suggest the WCA is not effective in indicating whether claimants with epilepsy are fit for work:
We outline below the reasons why we believe the WCA is not effective in indicating whether claimants with epilepsy are fit for work. We then go on to make suggestions about how to address these concerns. Finally, we briefly consider two other aspects of the committee’s inquiry brief – the appeals process and outcomes for claimants.
Epilepsy is an individual and variable condition. The experience and affect of epilepsy can vary from one individual to another, and can change from day to day or over the longer term for a single individual. The fluctuating nature of epilepsy means it is very difficult to answer questions about how it impacts upon an individual’s day to day life. For example, experiencing night time seizures may effect an individual’s ability to concentrate at work the following day, or for another individual tiredness may trigger seizures meaning working variable shifts is not practical. The assessment process is not set up in a way that enables people with epilepsy to adequately explain the subtleties of how their condition affects them – and impacts on their ability to work – at different times.
The following quote from a survey respondent (February 2014) indicates the difficulties the ESA50 form presents:
“The questions on the long-winded form did not apply to me at all - I had to write in the other comments box for each page. The questions did not really give an understanding of how a person suffering from ongoing seizures can look and feel fine one day - but be very unwell due to fits the next day and need to take lots of sick days at short notice, which makes holding down a job very difficult.”
The experience of not being able to ‘fit into boxes’ continues at the face to face assessment stage, as outlined by one helpline caller (June 2013):
The caller told us he has seizures at night which affect his ability to cope during the day. He explained that he just couldn’t get this across to the assessor as this didn’t fit into the boxes.
Perhaps most importantly, how the individual appears on the day of assessment may not be an accurate reflection of how their condition affects them more generally. This comment from one survey respondent (August 2013) is typical:
“The decision had been made by me walking in looking normal. Why are people with epilepsy treated differently because they don't have a huge sign round the necks saying faulty brain? We can do things but not all the time. I wasn't given the chance to explain this.”
Both charities have spoken to people who said that the assessors did not understand the different types of seizures. We have heard complaints that assessors have referred to focal seizures in a way that compared them to, and calculated them as being less impactful than tonic-clonic seizures. For example “so you’ve had a few partials – but when did you last have a full seizure?” Any types of seizures can have a huge impact on an individual's capability to work.
Many anti-epileptic drugs also have associated side-effects that can also impact on a person’s health and well being.
There is more to epilepsy than having seizures. Epilepsy may not only limit ability to work at the time of a seizure itself and during recovery, but the impact on memory, concentration, cognition, anxiety and depression, stigma, and isolation may be more enduring and therefore have a constant impact on the individual. It is often the unpredictable nature of seizures that has the greatest impact on an individual. On a day without seizures an individual may lead a 'normal life', but having a seizures can mean having to change plans at the last minute. This impacts upon all areas of life, not least because of the constant fear of having a seizure.
People with epilepsy have told us that WCA assessors have a significant bias towards physical ability rather than mental health, and often only note seizure duration and seizure frequency. This is an inadequate measure of the impact of epilepsy on the person, and an ineffective way to establish whether a person is fit for work. As one survey respondent (February 2014) explained:
“They need to take into account the whole effect, the complete person. They are trying to equate epilepsy with a broken arm which you can't as the brain affects the rest and it doesn't necessarily stop when you can't see a grand mal or a myoclonic jerk happening any more.”
64% of survey respondents said they felt the assessors did not give them the opportunity to fully explain how their condition impacts on them. We believe there are several reasons for this as explained below.
Firstly, memory issues, as well some types of seizure causing lack of consciousness, mean some individuals may be unable to fully describe how their epilepsy affects them. The following survey responses highlight this:
“I felt the person who had done the assessment on me didn't know much about epilepsy because they said to me that I should know what would cause me to have a seizure and what happens to me when I have a seizure which I know with quite a few people who suffer with epilepsy have no idea what can cause them to have a seizure or what happens when they have a seizure, we only know how we feel after them and then we can not always put that into words.”
“I was basically just asked what happens when I have a seizure (I could give limited information), what happens after and how long does it take to come round after (again, I have no idea how long except for several hours so I wasn't much help to them with that one either).”
Secondly, assessors can also bias the process when a claimant finds it difficult to explain how their condition impacts on their ability to work. People with epilepsy have told us that the assessor will ask a question and then answer it on behalf of the claimant – prompting the claimant to agree. This practice is not helpful, and people with memory problems due to their epilepsy have told us that they became flustered and struggled to adequately explain how their epilepsy affected them. They said that the assessors began to lead them to answers. Individuals also report that what they said in assessments was inaccurately recorded by the assessor:
One helpline caller explained all about the longer term problems they experience after a seizure. This was missing from the write up. Overall he felt the write up was nothing like what was described in the assessment.
Thirdly, many people with epilepsy also tell us that the ESA50 form is also long and complex, making it difficult to complete. Many people with epilepsy have memory difficulties or learning disabilities as outlined in the following survey responses (August 2013):
“I would also like to suggest that as for any form that may be filled in by someone with slow processing skills the sentences used are short.”
“I feel the ESA forms are far too repetitive and can be misleading for people with memory issues.”
Not only is the WCA ineffective as a discriminator of capability for work, for some individuals the process of applying for ESA is actually causing their health to worsen. One quarter of people with epilepsy calling Epilepsy Society’s helpline in 2013 about ESA and the WCA said the stress of the WCA was increasing the frequency of their seizures (stress is a recognised seizure trigger for many people with epilepsy). This is a quote from one survey respondent (August 2013) about how the WCA affected her:
“I have depression also this procedure made my condition worse and I am now on medication for that too. Surely now costing the government more. This did not just affect me but affected my whole family and my close friends.”
Another quote highlights how vulnerable many WCA claimants are; the process does not adequately take this into account.
“I have depression too so when I was put in the WRAG it hit me hard and I didn't have the energy to appeal, or anyone to support me. It is a humiliating process. I wish it could be done by my own GP, someone who knows me.”
A few individuals have told us the whole process is so daunting they have just not even bothered to apply, leading to financial hardship. This quote from our survey shows how stressful the process is for some individuals:
“I have pulled myself out of the process. Unfortunately the process was so awful that my seizures and mental health worsened throughout this period. It became the case where the stress of claiming wasn't worth the impact on my health.”
For some individuals, the assessors themselves had a detrimental impact on their experience of the WCA process. While we hope these are isolated incidents, it is unacceptable that claimants have been treated in this stigmatised manner by assessors working for a government contractor:
One helpline caller (July 2013) told us that the assessor laughed when she said she had uncontrolled epilepsy. The caller is now going through the complaints process.
Being told 'some people with epilepsy work' by my assessor made me feel worthless. Yes some people work, some of us want to work but some of us also have uncontrolled epilepsy. (Survey respondent 2013)
How can the WCA process be improved to make it more effective?
Given epilepsy is such a complex condition which often takes many years for even a specialist medical professional to diagnose, medical evidence is of paramount importance in assessing capability for work for people with epilepsy. This is highlighted by the following quote from an Epilepsy Specialist Nurse (August 2013):
“As their nurse - I treat the whole person. I want to help my patients achieve a ‘normal life’ and that means employment. However, I reluctantly know which of my patients can’t work due to their epilepsy. Employment is out of their grasp, for their own safety and the safety of others. I wish that I was asked about these patients earlier in the system and before their ESA is stopped after an inadequate assessment by a professional who didn’t understand epilepsy and simply went through a route list of questions that only related to physical disabilities.”
72% of survey respondents reported that they did not feel that the assessors had taken medical evidence into account, as highlighted by the following from a helpline caller (January 2013):
One caller told us how she had a WCA and was turned down for ESA. She has never had seizure control, having seizures that cause her to lose awareness on a daily basis. As a result she has never worked. She had a letter from her GP saying that it was unsafe for her to work but there is no mention of this in the write up of the assessment.
Furthermore, we asked survey respondents who had successfully overturned a decision at an appeal what they felt made the difference at the appeal stage. Overwhelmingly, people told us that it was because additional medical information was fully considered, as these two quotes highlight:
“The appeal panel accepted and reviewed evidence from consultants, specialists and other healthcare professionals.”
“They where shown the same letters from my GP and neurologist, but actually took the time to read them.”
Previously under Incapacity Benefit rules ‘exceptions’ were applied to claimants with certain conditions. We propose that exception reporting highlights conditions where, due to their complexity, additional information from the claimant's own specialists must be collected to support form ESA 50. Gathering and reviewing additional medical evidence earlier in the process will enable the decision makers to more accurately review and process claimants with epilepsy, potentially reducing the need for a face-to-face assessment or appeals. This would save time and resources for both DWP and claimants.
People have said that they are only told that further medical evidence was required after they have received a negative decision in regards to their claim. In this respect we also feel that there should be every opportunity to feed in medical evidence right up to the point of a decision and clearer guidelines should be developed about the weighting that should be applied to medical evidence by decision makers. Systems need to be improved to streamline collection of medical evidence by providers, perhaps through working with the Royal Colleges and other medical professional bodies.
Claimants should be given more information up front about what to expect from the WCA process, what their responsibilities are, and how their claim will be dealt with.
A key issue raised by callers to Epilepsy Action’s and Epilepsy Society’s helplines is that people making a claim do not fully understand form ESA50 or what evidence they themselves should provide to support their claim (should I gather evidence from my doctor, nurse or specialist?), what medical evidence the assessor or decision maker can request directly, when and how to provide additional medical evidence (to prevent any delays - can I send additional medical information after I’ve submitted my form?).
It should be made clearer that claimants have the right to take someone into the assessment with them. 32% of our survey respondents did not know they could take another person into the assessment with them. This is particularly important for people with epilepsy who, as outlined above, often struggle to articulate how their condition affects them.
People should also be clearly informed of their right to request an assessment at home. The majority of people with epilepsy claiming ESA are unlikely to have seizure control through medication. They will therefore not have a driving license under DVLA rules. Travelling to an assessment centre on public transport can be a very daunting experience for someone who is fearful of having seizures or has related anxiety about being out in public.
68% of claimants responding to our survey said they did not think Atos or DWP gave them enough information before their face to face assessment. Improving communications with claimants about the face-to-face assessment will empower them to provide full and useful information during their assessment, as well as reducing anxiety about the process.
At present it is being left to charities such as Epilepsy Society and Epilepsy Action to fill the gap in information available to claimants via our helplines and information resources.
Finally, assessors need to take into account the whole person and not make assumptions about how a condition might affect an individual. Epilepsy is different for everyone, and related conditions, such as depression or memory impairment, may be more relevant in assessing capability for work. Assessors should consider whether the individual might also experience an undiagnosed medical condition that makes them currently unsuitable for work.
When we asked claimants who had successfully overturned a decision at appeal what had made the difference, many said they had been given plenty of time to talk about their condition and its impact, prompted by appropriate lines of questioning. One survey respondent who was successful at overturning a decision at appeal explained,
“They took extra information from me and also I was given plenty of time to talk. [I] was asked appropriate questions about my condition.”
As a backup to appropriate training, allowing recording of assessments would mean that both assessors and claimants could clarify what was said. This should be allowed on any technology available rather than the expensive recording devices that provide duplicate copies of the recording, (as stated in the current regulations). Such devices are beyond the means of most claimants.
It is worth nothing that our survey demonstrated that some assessors are getting it right – 22% of respondents felt that they were able to fully describe the impact of their epilepsy. The following quote from our survey (August 2013) highlights that when an assessor has the right skills and knowledge, the experience of the WCA is dramatically improved:
“I had a very sympathetic and knowledgeable doctor perform my assessment who understood how my epilepsy and anxiety impacted my life and asked appropriate questions about my medication and side effects”.
Epilepsy Action and Epilepsy Society hosted two benefits conferences, one in the north and one in the south. The experience of some people who had claimed ESA and the experiences of the advisors speaking at the events, suggested that the process and regulations might not be implemented equally across the UK. A particular issue was the interpretation of rules around incontinence and consciousness during a seizure and differentiation with sleep incontinence.
The reconsideration and appeals process
The delays between receiving the decision letter and having the appeal heard have been strongly criticised by people with epilepsy. Respondents to our survey have waited between six weeks to 14 months to have their appeal heard. This has had a huge financial impact on many people with epilepsy who are unable to work. The following are quotes from our survey (August 2013):
“Waited 14 months until the appeal during which time I had no income. Had to survive off my parents' Pension Credit which they struggle to live on. I put this forward at my case as the reason for no doctor's letters etc. due to unable to pay for them with NIL income.”
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“I waited three months for appeal & borrowed money via a social fund loan from DWP then eventually had to take out a payday loan I'm still paying back.”
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Many ‘claimants’ believe that the two year review cycle is too frequent for people who have a long-term medical condition. They feel that they are on a constant cycle of apply, assess, decision received, appeal and re-assess. This was a particular issue for those who waited 18 months to two years to win their appeal, just to find that within weeks they were asked to attend another WCA. They questioned this and found that because their appeal was backdated to the date of their original decision – they were in fact due to be reviewed again despite no change in their condition or the impact of it.
Outcomes for people determined fit for work or assigned to the WRAG or the Support Group
We have evidence that employment advisors will sometimes encourage people with epilepsy to go back and appeal a decision when they placed in the fit to work group.
One caller to our helpline told us he had been put in the fit to work group but the employment advisor told him to appeal. The advisor explained to the individual that they would not be able to place him anywhere due to the risk assessment he had carried out in relation to going into a place of work. (Helpline caller, February 2013)
I had one face to face appointment with a work employment advisor who looked at me incredulously and said why are you even here? (Survey respondent, February 2014)
20 March 2014