In depth interviews were also undertaken with 79 patients and 64 further patients took part in focus groups. The study found that while most patients seemed to be satisfied with the care they were receiving, there was a lack of focus in how epilepsy services are delivered. There was a lack of co-ordination between primary and secondary care, with confusion between the relative roles of GPs and specialists. While GPs were accepted as being the right people to monitor people's epilepsy, there was strong support for specialised epilepsy services within the hospital setting.
Specialist care is recommended for all children on medication for epilepsy.
In addition to improvements in provision of medical services, patients highlighted the need for better access to information, such as lifestyle advice, the causes and likely course of their epilepsy, potential side effects from drugs, information about help from social services. The needs and views of carers were also considered. Several recommendations have now been made to the Department of Health by the CSAG committee in order to provide services that reflect patient needs, that are equal across the country and that are effective, also highlighting the need to lessen social exclusion, disability and handicap among people with epilepsy. The recommendations take account of the need to strengthen primary care while promoting specialisation in secondary care. In particular there is a need to clarify the role of primary and secondary care.