- Work come out as the main problem of those affected by the disease: declaring the condition – or even only the need to take the drugs which control it – can lead to limitations on one’s employment opportunities.
- Relationships: people with epilepsy often tend not to expose themselves, for fear of rejection or isolation
- Treatment: a deeply heartfelt issue in the UK, but one that characterizes the three Countries with regard to those with a form of epilepsy uncontrolled by current drugs, or about 30-40% of those suffering from the disease.
On the occasion of the International Epilepsy Day (February 8), Elma Research conducted – on behalf of Angelini Pharma – three interviews with the presidents of the three most important epilepsy-fighting organizations in Italy, the United Kingdom and Spain. Three privileged perspectives, to understand the situation of those suffering from this condition in Countries with 500,000, 600,000, and 700,000 cases, respectively, in order to observe any similarities and differences between the various realities and, above all, to understand the commitment of the people who strive to improve the conditions of those who live constantly under the sword of Damocles represented by their seizures.
The topic of clandestinity concerns the world of work, which is the main problem for those suffering from epilepsy, one which is transversal to the three Countries. People with epilepsy have a harder time finding work, and when they find it they almost never manage to access well-paid and responsible positions.
In fact, declaring to take drugs and/or to suffer from epilepsy is almost always a guarantee of a lower response when looking for work. This leads many people not to declare their condition, and therefore live in anxiety due to the risk of seizures, the absence of protection and a continuous state of alert in the workplace.
Employers have many doubts: with regard to the disease itself, they are worried about a possible excessive request for permits and a possible high rate of absences; they fear that, in the case of tasks requiring a direct relationship with customers and suppliers, the latter would be frightened in the event of a seizure. In large companies, where inclusion programs are present, the situation is changing. But not in most medium or small businesses, explains José Luis Domínguez, president of the Federación Española de Epilepsia (FEDE), one of the three leaders interviewed by Elma Research: “First of all, a person with epilepsy risks losing their job due to possible absences. Then, if they have a seizure, they are devastated and need 2 hours of post-critical situation to normalize. Finally, no one knows how to cope with a seizure. Unfortunately, the simple basic knowledge of first aid for a person with epilepsy is lacking”.
In particular, in Italy the question of whether to reveal to the employer the need to take drugs is raised: this aspect – which allows them to live a normal life – very often excludes people with epilepsy from job opportunities. For example, if one wins a public competitive examination, a short circuit is created, because the doctors of the public administration do not accept this condition, even if the neurologist states that the person is fit and able to carry out the work for which he or she has competed.
According to Giovanni Battista Pesce, another of the Italian peculiarities concerns the driving license: European legislation establishes that people with epilepsy can renew their license every 5 years (instead of every 2) if they have not had any seizures for 5 consecutive years. The Italian legislation has implemented the European one, establishing however that the absence of a seizure must be accompanied by the absence of a drug therapy, effectively creating a short circuit.
The big basic problem in Italy and Spain is that there is no complete legislation to support and protect people with epilepsy: there is no recognition of disability (except in very low percentages, which do not lead to any substantial rights), and therefore there is no access to inclusive benefits, such as dedicated unemployment lists.
Richard Chapman, chair of the UK organization Epilepsy Action, gives an accurate picture of the British reality, where people with epilepsy are 600,000 (almost 1 in 100 people), and where about 87 people are diagnosed with the disease every day. The risks of exposure concern above all the relational sphere. In this regard, Richard Chapman points out that “in relationships – especially emotional ones – one always put oneself on the line, exposing to the possibility of being rejected, and this can be hurtful”. And this despite a reality, like that of the United Kingdom, in which much has already been done to inform and educate on the disease, starting from school. Also, according to Richard Chapman, things are slowly improving with regards to the awareness on the topic of epilepsy: it’s easier to find correct and accurate information, and people with epilepsy have a lower tendency to self-isolation and to conceal their condition, while managing more and more to speak up about the disease and to dispel the false myths among those around them.
It is therefore Spain, together with Italy, that places the greater emphasis on social isolation and self-exclusion, on the condition of clandestinity of people with epilepsy, even in view of the many episodes of discrimination at school and at the workplace, which lead epileptics to not declaring their condition. The theme of clandestinity is also addressed extensively by Giovanni Battista Pesce, president of Associazione Italiana contro l’Epilessia (Italian Association against Epilepsy). “The solution cannot only be to fight prejudices dating back to the Middle Ages, or to talk about great personalities suffering from epilepsy (Napoleon or Julius Caesar are often mentioned), but also to create the best possible conditions, through ad hoc regulatory interventions, such as Bill no. 716 on improving the protection of the rights of people with epilepsy in the healthcare (also with a look at drug resistance), social and occupational context, a bill supported by AICE and currently scheduled for discussion at the XII Commission on Hygiene and Health of the Senate. Or like the ministerial guidelines of 2005, which opened up to the possibility for children to take drugs at school, a critical step for those suffering from epilepsy, but also for those affected by other chronic diseases”.
In the United Kingdom, one of the critical issues also concerns the quality of care: according to Richard Chapman, the rate of misdiagnosis is very high, around 20 to 30%. This means that there are about 100,000 people who do not receive a correct diagnosis, and who therefore receive inappropriate therapy. And this is also determined by the shortage not only of neurologists, but also of specialized nurses, who could play a very important role in informing and supporting people with epilepsy.
As Richard Chapman explains: “We know that the sooner you start effective treatment, the more likely you are to have positive outcomes. There was some research done some time ago, which says that misdiagnosis rates in the UK were particularly high and could be on average somewhere between 20 to 30%. This means that there are over 100,000 people in the UK who got a misdiagnosis of epilepsy, and they are getting the wrong treatment, are probably receiving medication that they do not need to take. So that is another good reason why people need to be seen by a specialist. The people who work in the NHS are great; there just are not enough of them. There are not enough specialist nurses. Everybody with epilepsy should be getting an annual review, should have the opportunity to have an ongoing relationship with a well-trained epilepsy specialist nurse, because not only can they provide the medical information that people need on an understandable basis, but they can even provide the help and support they need with their everyday life, and also, they save doctors time. The number of surgeries that take place, for both adults and children, is well below the numbers that could potentially be done”.
As Richard Chapman explains very well, epilepsy covers a broad spectrum of situations: “The majority of people with epilepsy have total or good control of their seizures. This doesn’t mean they don’t have a problem with their disease, but it’s not something that happens every five minutes. At the opposite end of the spectrum, we have people with severe epilepsy who have many, many seizures per day”.
This is the issue – as underlined by the presidents of the three organizations – of people with uncontrolled epilepsy, who can present different intervals between seizures. These are about 30-40% of the total: if we consider that about 1% of the population suffer from this condition, this is a non-negligible number. In recent years this percentage, despite the increase in the number of drugs available, has remained constant. For this reason, there are many expectations regarding the results of the pharmaceutical research: the possibility of new drugs can certainly improve this picture. AICE, in particular, considers a direct commitment to raising funds to be invested through calls for preliminary studies, aimed at exploring the possibility of drugs that not only control the disease, but can even cure it.
There are also many expectations from technological innovation: in his interview, José Luis Domínguez talks about a new medical device which could soon be available in Europe and which can recognize the warning signs of a seizure, therefore alerting both the persons involved and their family members. Richard Chapman also mentions the use of sensors to be placed under the person’s bed, to recognize the pattern of a seizure in advance and wake them up.
In summary, all three organizations ask for: protection, inclusiveness, recognition of disability, laws and concrete measures that enable people with epilepsy to live a quality life based on their conditions, by acknowledging and meeting their needs.
This research is part of a larger project, which includes an in-depth investigation of the needs of people with epilepsy in five European Countries (Italy, France, Germany, United Kingdom, Spain), and which will be presented on March 26, Purple Day, a day dedicated to raising awareness of and sensitizing the general public about what it really means to live with epilepsy.
 Data reported by the Organizations. In the case of Spain, the number is higher, because it includes all those who at least once have experienced a seizure.