Written evidence from Epilepsy Action (DEG0193)
Work and Pensions Select Committee – Written Evidence
Background
Epilepsy Action is a national charity representing the 600,000 people living with epilepsy in the UK. We provide advice and information to people living with epilepsy and their families and carers, and campaign to improve the lives of everyone affected by epilepsy. We work with healthcare professionals, politicians and the public to fight for the services, care and support that people with epilepsy need and deserve.
Epilepsy is a condition that affects the brain, and causes a tendency to have seizures. There are many different types of seizures - individuals might lose consciousness, or may stay aware of what’s happening around them. They might have strange sensations, or movements they can’t control, or might go stiff, fall to the floor and shake. Some people only have one type of seizure, and some people have more than one type. While some people’s seizures may be controlled by medication, many people’s seizures remain uncontrolled despite taking anti-epileptic drugs.
The impact that epilepsy has on an individual depends on the severity of the condition, but even the fear of having a seizure can have a huge effect on the person and how they live their life.
We know that the disability employment gap has remained roughly around the 30% mark for the past ten years.
While just over 50% of disabled people are currently employed, over 80% of non-disabled people are in work.
However, the employment rate for people with epilepsy is only 34%. Figures from the Office of National Statistics (ONS) show that the only people that have a lower employment rate are those people who have "mental illness or other nervous disorders" (29%) and "severe or specific learning difficulties" (18%).
Research by the Trade Union Congress (TUC) has also highlighted that people with epilepsy in work are paid on average 11.8% less than non-disabled workers. This means that not only are people with epilepsy less likely to have a paid job, but when they do, they earn less than their non-disabled peers.
The low rate of employment for people with epilepsy is very concerning, given that there are very few jobs someone with epilepsy cannot do. Depending on how the condition affects their daily life, many people with epilepsy can carry out a job with minimal adjustments. Despite this, there are many who are unable to find a career.
Barriers to employment
Research carried out by the Institute of Employment Studies on behalf of Epilepsy Action highlighted a number of reasons why many people with epilepsy experience problems getting into and staying in work.
Attitudes from employers and co-workers remain a key concern.
The research found that many employers lacked understanding of epilepsy. They were unaware of different seizure types and believed that all seizures involved a person falling to the floor and losing consciousness (what are classified medically as ‘tonic-clonic’ seizures). Employers were usually less familiar with other less visible types of seizures, such as absence seizures.
There was uncertainty about the triggers that might result in a seizure. For example, several employers thought that the majority of people with epilepsy would be ‘photosensitive’, and experience seizures triggered by flashing lights or flickering computer screens. However, this is relatively uncommon and only affects 3 in 100 people with epilepsy.
Employers also lacked awareness of the fact that about half of people with epilepsy are seizure-free.
Our research identified that safety is employers’ principal concern when considering hiring or working with someone with epilepsy. It was the first thing they mentioned when asked how they would feel about hiring an individual with epilepsy. Their safety concerns centred on a number of areas, influenced by the types of workplaces and work activities they carried out. Operating machinery of any kind, but particularly driving vehicles and using machines with blades, was a central concern. Working alone, particularly when away from the main work premises or with a client, was raised as a potential issue. Putting too much pressure on the person with epilepsy was also a worry, whether this was caused by stressful situations, long working hours, shift working or testing deadlines. These anticipated safety issues led employers to say they would exclude the possibility of recruiting someone with epilepsy at the outset. This suggests that (as people with epilepsy concluded too) addressing concerns about safety is likely to be key to changing the mindset of many employers about recruiting someone with epilepsy.
Employers are likely to be concerned about the costs and disruption that might ensue from hiring someone with epilepsy. Likewise, employers involved in our research were hesitant about making adjustments to allow the person with epilepsy to fit into their workplace and activities. They expected this to present costs and logistical challenges and wondered if it would be feasible. For instance, most said they did not have space on their premises where an employee could go to recover after a seizure. They were unsure whether they could afford for other staff to leave their duties to care for someone with epilepsy in the event of a seizure, or cover for someone while they went to hospital or returned home to recover. They were also concerned that hiring a person with epilepsy could increase their employer liability insurance costs. In many cases there was an overall sense that employers wanted to support people with epilepsy, but that they assumed adjustments to be beyond the scope of what they could offer because of the nature of their workplace and its main activities, despite these adjustments being relatively minor. Although epilepsy can have an enormous impact on individuals, even simple adjustments such as providing a place to rest and relax following a seizure and training for managers and staff about epilepsy can have a huge impact on people’s experience in the workplace.
Another key concern for employers was how colleagues would react to seeing a seizure. Those participating in this study anticipated that this would be distressing and that employees would not know what to do, unless they had received prior training. This is consistent with the findings of a poll of 2,043 adults in the UK which showed that, of those (over a quarter of respondents) who expressed concerns about working with a colleague with epilepsy, 63 per cent stated that this was because they had no idea about what to do to help a co-worker havinga seizure (YouGov, 2016).
Where employers worked with clients or partners, fears about seizures were compounded because they could not expect clients or external organisations to know how to respond.
We know from our experience that when employers undertake epilepsy training, they have a better understanding of the condition, and how they and other employees can help and support a colleague with epilepsy. Epilepsy Action have now also launched an employer toolkit designed to help support employees with epilepsy in the workplace.
In addition to this lack of understand and the attitudes of employers, another factor is that some people with epilepsy may have difficulty in understanding and defining their own variable health condition.
According to the research carried out by the Institute for Employment Studies, most people with epilepsy concluded that they would not feel confident or comfortable about clearly describing it to an employer, or educating colleagues about how to handle their condition at work. This could make it more difficult for people with epilepsy to negotiate adjustments to the physical environment and workplace activities, and to agree with colleagues what to do in the event of a seizure. It could also make it harder for people with epilepsy to challenge employer discrimination.
Employees with epilepsy were concerned to assure their own safety and that of colleagues, but found the conversations with employers about this awkward and stressful. Sometimes people with epilepsy appeared to take a short cut to being safe in the workplace by ruling themselves out of certain jobs. This carries the risk that the person with epilepsy might limit themselves to jobs that are physically safe, but below their capabilities.
60% of adults with epilepsy and ongoing seizures were found to experience symptoms of anxiety, and poor mental health was reported by many of the people with epilepsy in our research. Stress, depression, low mood and anxiety were all raised as issues. People emphasised that their mental health conditions were not a direct result of their epilepsy, but often resulted from the emotional toll of coping with epilepsy and its life-changing consequences. Treating both epilepsy and a mental health condition simultaneously sometimes meant people were taking several types of medication. This could result in side-effects that affected work performance, such as drowsiness or insomnia. Often, people were reluctant to speak to employers about their mental health for fear of ‘adding another issue’ to their roster.
The co-morbidity of mental health conditions and epilepsy in many cases suggests that it would be worthwhile educating employers and people with epilepsy about the likelihood of both types of conditions being present. This would also necessitate equipping some employers with better mental health awareness.
The people with epilepsy who took part in this research were unclear about what constitutes discrimination against people with disabilities in employment. This meant that they were reluctant to challenge behaviours and practices that they felt to be discriminatory, because they were unsure if this was supported by legislation. Comments and suggestions made about their ability to take on work and progress within the organisation were often felt to sit in a ‘grey area’.
The majority of people with epilepsy who took part in this research were firmly of the opinion that it was better not to disclose the fact that they had epilepsy during recruitment, since disclosing carried the risk that the employer would turn down their application. This was often based on personal experience: several people suspected that employers had not called them to interview or offered them a job after they had revealed their condition. While it was hard to evidence discrimination – employers had tended to provide plausible alternative reasons not to take their application forward – focus group participants felt strongly that it had happened.
People with epilepsy discussed how difficult they found it to negotiate adjustments with employers. Key issues were that obtaining an adjustment involved them being treated as different from colleagues, and creating extra work for line managers - both elements were seen as creating resentment amongst employers and colleagues.
Impact of the pandemic
Epilepsy Action has heard mixed responses about the impact of the pandemic on the employment experiences of people with epilepsy.
The most important impact overall is that fewer jobs are available, which has affected people with epilepsy’s opportunities to enter the job market.
For those in employment, where they are able to work from home, there experience has largely been positive, as there is less need to travel to work and less stress as a result of not needing to use public transport. Stress is one of the main triggers for seizures, and therefore any reduction in stress is positive.
Where people have not been able to work from home, their experience has been much more negative, due to the added stress of relying on public transport during a pandemic. We have also heard reports of people with epilepsy fearing being taken into hospital during the pandemic.
People with epilepsy have also reported increased financial stress due to either being placed on furlough, or due to concerns about possibly losing their job due to the impact on the economy.
Employment Support and Benefit System
We believe that the current employment support available is far too generic, and that there is not enough targeted support for disabled people, and particularly for specific groups like those with fluctuating and invisible conditions. We are concerned that both the current provision of employment support and the benefits system does little to help disabled people get into work.
In particular, two of the schemes launched during the pandemic, Kickstart and Restart, lack any element of support for disabled people. In addition, both of these schemes are only available to people on Universal Credit, which leaves out any people who may still be on Employment and Support Allowance (ESA).
The need for repeat assessments as part of ESA, Universal Credit and the Personal Independence Payments (PIP) process has caused distrust in the system, especially as many claimants feel that their experiences of their own condition are not believed by assessors.
The use of sanctions and conditionality within the benefit system further contribute to the adversarial nature of the system, and do nothing to instil trust in the system among disabled claimants. There is evidence to suggest that when these were removed during the pandemic, people felt more trust in the system without negatively impacting on the number of people actively looking for work.
Access to Work is generally a very positive scheme, and one of the only schemes aimed at job retention. However, there are still some problems with how it is implemented and operated. Firstly, many employers and employees are unaware of the scheme and so do not take up the support available. Secondly, it can take far too long for support to be put in place. We know that in some cases, it can take 6-9 months for adjustments to be implemented through Access to Work. This causes frustration for both the employer and employee, and can cause serious damage to the relationship before reasonable adjustments are made. Finally, people applying for support through Access to Work are required to undergo an assessment. People contacting our helpline have told us the assessors undertaking these have a lack of understanding of epilepsy and are not always aware of what adjustments would be helpful to people with epilepsy. In addition, for those people who have already been through an assessment as part of the benefits system, a further assessment can be frustrating and stressful.
The Disability Confident scheme is a positive idea. However, it needs further reform to ensure it is providing the best possible outcome for disabled employees. The commitments required of Disability Confident employers do not go far enough, and should be the very minimum of what we should expect all employers to provide. For example, to reach level 3 of Disability Confident, an employer would not need to have employed a disabled person. The scheme also relies far too much on the self-reporting of employers. It should include reporting of the experiences of disabled people working for, or having applied for a role at, companies at all levels of the scheme.
There has been very little work done to understand the effectiveness of past and current employment schemes. A systemic review should be undertaken to determine what works, and what doesn’t, in relation to how successful various support schemes are in getting disabled people into work.
Overall, despite a large number of employment support programmes, too many of these are too generic and do not include focused support for disabled people. The biggest indictment of these schemes and their impact for disabled people is the fact that the disability employment gap has largely remained stable for many years. Clearly these schemes are not having the desired effect of getting disabled people into work.
Recommendations
In order to get more people with epilepsy into work, we are calling on the Government to reform the support available to people with epilepsy and to introduce targeted employment support for people with epilepsy including:
May 2021