Rare and complex forms of epilepsy: a European Charter for continuity of care

For someone living with a rare and complex form of epilepsy, reaching adulthood must not mean losing the network of care, expertise and support built up over the years. This is all the more true given that, for many of these people, reaching the legal age of adulthood does not coincide with achieving independence: cognitive disabilities, even severe ones, behavioural disorders and other comorbidities may necessitate ongoing care and permanent support from the family or other guardians, such as a support administrator. Yet, even today, the transition from paediatric to adult services all too often represents a break: points of contact change, care pathways become fragmented, and families find themselves having to fill gaps in healthcare and social care on their own – gaps that should not exist.

It is from this realisation that the Charter of Rights for Continuity of Care in Rare and Complex Epilepsies has emerged – a European document that aims to transform a now clearly recognised need into a concrete commitment for the healthcare systems of all European countries. The Charter not only proposes better management of the transition phase, but also affirms a broader principle: continuity of care must be guaranteed throughout a person’s entire life and become the norm, not the exception.

Its ten principles set out a veritable manifesto for the care we would like to see put into practice: personalised care plans that are periodically reviewed, a transition planned well in advance, structured handover procedures between paediatric and adult care teams, adequately trained professionals, multidisciplinary care, continuity in rehabilitation, educational and social pathways, so that the skills and independence painstakingly acquired over the years are not lost with the transition to adulthood, recognition of the role of carers, and clear responsibilities within healthcare and social care systems. For people who are unable to manage their own care pathway independently, this also means formally recognising the role of those who support and represent them, ensuring their involvement in consultations, treatment decisions and during any hospital admissions.

Experience in some European countries shows us that all this is possible: there are models of good practice capable of ensuring a structured transition and coordinated care even into adulthood. It is precisely in access to adult services and in hospital admissions that a lack of specific expertise in cognitive and behavioural disabilities can make clinical and care management even more complex. For this reason, the real issue today is no longer knowing what should be done, but being able to translate knowledge and good practice into concrete organisational structures, responsibilities and health policies.

The Charter is therefore also intended as a call to action. Clinicians, patient organisations, public decision-makers and service managers are called upon to work together to ensure that no person with rare and complex epilepsies – and no family – finds themselves facing a ‘leap into the unknown’ at the delicate stage of the transition to adulthood. Ensuring continuity of care means not only safeguarding the person’s health and dignity, but also preserving the skills they have acquired and guaranteeing them the highest possible level of independence, social participation and quality of life. At the same time, it means developing pathways capable of supporting even those who will continue to require assistance from others throughout their lives, whilst recognising and supporting the essential role of families and carers.