Å leve med epilepsi

In this report, the life situation of people with epilepsy is described, as is the role of different local social services for this group of users. The description is based on two data sources. Questionnaires were mailed to members of the Norwegian association of people with epilepsy (children/youths as well as adults). With a response rate of 44 percent, this survey resulted in 946 responses. This sample is most probably not representative for all people with epilepsy in Norway, as people with severe epilepsy as well as people who experience only trivial consequences of their epilepsy are most likely overrepresented among non-responders. As a consequence, there is a greater variation in life conditions and in experience with help agencies among all Norwegians with epilepsy, than among responders to our questionnaire. The second data source consists of telephone interviews with employees of different local services (municipal social assistance agencies, social security offices, labour market agencies, pedagogical/psychological services (PPS) and municipal doctors/GPs) in 18 municipalities of different size and location. The project was contracted to NOVA by a Working group for epilepsy appointed by the Norwegian directorate for Health and social affairs in April 2005. Manifestations of epilepsy The challenges of people with epilepsy may vary from person to person. There are several types of seizures, with different causes, frequencies and consequences. Epilepsy can manifest itself at different stages in life, it can be the only diagnosis or be part of a more complex medical condition. The considerable variation between persons with epilepsy in symptoms and needs also constitutes a challenge for agencies endowed with the responsibility to help this group. Almost all respondents used medication to control their epilepsy. More than half reported that they also applied other coping techniques, like leading a well regulated life. Side effects of medication were frequently reported, like fatigue and concentration and memory problems. Outside the labour force Epilepsy has consequences for social life and for employment. A considerable proportion of people with epilepsy are outside the labour force and dependent on various forms of social security for their living. The educational level is high for many, but a small fraction is very poorly educated. Many adults with epilepsy have no partners (or children), and some of them still live with their parents. Quality of lifePeople with epilepsy report poorer quality of life and mental health (sleeping disorders, nervousness, loneliness and depression) than the average population. There is considerable variation in reported quality of life. On the whole, quality of life was reported to be better at the time the questionnaire was filled in, than it was five years ago, and it was expected to be even better five years ahead. Aninvisible illness Hospitals and the Association of people with epilepsy were reported to be the main sources of information about the disease. Epilepsy is an invisible illness, still associated with prejudice, and information both to patients and to family, friends, fellow students and colleagues is important. Most respondents reported that they were open about their epilepsy. However, few used the special epilepsy ID needle. Almost all respondents reported that they regularly saw a medical specialist, often in combination with seeing their GP - for control, adjustments of medication or after changes in their seizure pattern. One third said more frequent contact with their doctor would result in better treatment. A small proportion (14 percent) had received surgical treatment for epilepsy. For two third of them surgery resulted in improved seizure conditions. Assistance Transportation can constitute a particular problem for many (being without a driving licence). One in six reported that they receive sufficient assistance with transportation from municipal agencies. Still, a similar proportion is in need oftransportation assistance or more such assistance. Three in four respondents had been in contact with social security and one in three is recipient of one or more cash benefits. Half of the adult respondents are on full or partial disability pension. One in five has been offered habilitation/rehabilitation. There is considerable variation between groups - children/youths, people with additional diagnoses and frequent seizures more often than the others receive social security benefits. Almost three in ten adults had been in contact with labour market authorities because of their epilepsy, for rehabilitation to regular work, testing of their work capacity, work placements, work for disabled scheme or education/retraining. Most of the children in the survey had been in contact with PPS, and a majority received extra services in the child care centre or in school. We found a general dissatisfaction with what was offered and delivered of services and in particular information given by social security offices, labour market authorities as well as PPS. One in three reported knowledge of the so called individual plan (IP) as a means to coordinate local services, foremost for children. There is no particular «epilepsy services» at the municipal social services office or at the other agencies where interviews were taken. Therefore, we experienced that it was difficult to find the right person to give information about services for people with epilepsy. It was particularly hard to get through to doctors. The agencies The agencies we interviewed were different in many ways. Social services could be organized differently in different municipalities, they were under city or municipal council control and economic restrictions. Services were granted according to needs, based on best judgement. Local labour market authorities and social security offices are national organizations, and services/benefits are granted according to national standards and regulations. Those who meet these standards, are given their rights, without economic restrictions, it was pointed out. The PPS prepares reports on clients and suggests services that are delivered by other agencies, like day care centres and schools. Municipal doctors and GPs are of medical services, oriented towards meeting medical needs and improving health. Both the PPS and doctors give first priority to professional standards. Economic restrictions are most strongly felt in social services. The other agencies reported shortage of time and staff. At all the agencies it was reported that clients/users/patients received the help and services they were entitled to. Those with the greatest needs were not subject to economic cut backs, and people with epilepsy were treated as well as other groups, we were informed. It was claimed by our interviewees that users are satisfied with services. This claim was supported by user surveys and personal reports to the agencies. Some interviewees told us, however, that not all users were equally satisfied.The agencies saw IP as a useful tool of coordination, but pointed out that an IP was not supplemented by extra resources, and IP-meetings consumed a lot of time. The users tell a different story Responses in the questionnaires from people with epilepsy and in the interviews with employees at the various local agencies differed in terms of judgement of the adequacy of benefits and services. Many users expressed dissatisfaction with their contact with PPS, social security offices and labour market authorities. Others reported that services were fine now but only after considerable use oftime and efforts from their side. While these agencies held the opinion that their clients were satisfied with the treatment and services they received. All agencies put little efforts in informing about their services. People with epilepsy were foremost dissatisfied with the information given (or not given) and had most of their information from hospitals, the Association ofpeople with epilepsy and informal networks. Geographic differences in services Clear geographic differences in services were uncovered, irrespective of being municipal or national responsibilities. Some services seem to be best developed in cities, like help with transportation, while other services are best in less populated areas, where users have better access to PPS, social security offices and labour market authorities. Most importantly, however, geographical differences seem to be accidental rather than systematic. One example - there is no clear connection between municipal budgets and quality of services and client satisfaction. Only within the medical services the diagnosis of epilepsy gives a right to treatment and care. For the labour market authorities and social security offices a diagnosis is a prerequisite, but help and services are granted on the basis of the needs. For Social services and PP-offices needs for help and assistance are evaluated independently of diagnoses. At the other agencies, the diagnosis is an important prerequisite for help and benefits, and a medical declaration gives important information to employees. But all agencies (except doctors) emphasized that the diagnosis itself did not warrant help and benefits. These were granted on the basis of the clients´ real need for help. It should be recognised that often in this sector the tasks may be difficult to handle and demands difficult to meet. Overall, those with the most difficult epilepsy (most frequent seizures and additional diagnoses) receive more help than people with less difficult epilepsy. Help and services are also better for children/youths than for adults. That goes for both medical and other services, and is partly due to the fact that some services (like PS and IP) are mainly directed towards children/ youths, despite being intended for the whole population