For a more detailed understanding, see Appendices 5, 6, 7 and 8, where all input is transcribed.
6.1.1 Input concerning objective 1 – Good lifelong brain health, prevention and quality of life
- The life course perspective: It is important to take account of the entire life course, in addition to primary, secondary and tertiary prevention. This involves measures for both individuals without brain disease and those who already have it.
- Prevention: A stronger focus is needed on preventive measures, such as reducing substance abuse, improving brain health literacy through campaigns and promoting universal measures such as sleep and physical activity.
- Social inequalities: Addressing social inequality, childhood, health literacy and greater expertise among the health and care services are key areas.
- Improve brain health literacy among the population: There is a need to improve brain health literacy both among the general population and among individuals with brain disease.
- Brain health in education: Brain health should be covered in multidisciplinary professional courses for health and care professions.
- Universal or specific measures: There were differing opinions as regards whether it is more important to have universal measures aimed at everyone, or just certain specific measures aimed at vulnerable/exposed groups.
6.1.2 Input concerning objective 2 – A more user-centred health and care service and better care for relatives
- User involvement: It is important to listen to users at both micro and macro levels. Cooperation with voluntary user and relative organisations will be important in order to obtain user expertise.
- Services aimed at relatives: It is essential to think holistically and include the whole family. Information that relatives need should be provided and children who are relatives must be given priority and receive age-appropriate information.
- Training for relatives: Relatives often act as coordinators and should be helped to perform this role. It is also important to safeguard the family’s own health.
- Brain health coordinator: It was suggested that the role of brain health coordinator be created among the municipalities to improve expertise and coordinate services for patients and relatives.
- Decision aids: There were proposals to develop and introduce a number of decision aids for patients with brain disease, so that patients can actively take part in decisions concerning assessment, treatment and follow-up.
6.1.3 Input concerning objective 3 – Good care from the onset of symptoms to diagnosis, treatment, habilitation and rehabilitation
- Multidisciplinary collaboration and coordinated services: It is important to create multidisciplinary and coordinated services that take into account the needs and wishes of the patient. This can lead to better treatment and care of patients and relatives.
- Primary objectives and sub-objectives: The sub-objectives need to be tidied up. For example, there is no overarching plan regarding who will treat different sleep problems.
- The transition between the primary and specialist health services: There are challenges as regards the transition between the primary and specialist health services and it is therefore important to clarify what should be at the various levels.
- Treatment and resource networks: It will be essential to ensure appropriate treatment, particularly for unresolved conditions. Resource networks can contribute to equitable treatment, but they do require dedicated resources.
- Care: There is a need for structured and seamless care
6.1.4 Input concerning objective 4 – Adequate knowledge and quality through research and innovation
- Research and innovation: More research and innovation are needed to develop the health and care services, especially during critical periods such as the early years of children’s lives.
- Collaboration: It is important to establish national research centres and promote cooperation, both nationally and internationally.
- Rare brain diseases: Research concerning rare brain diseases and the implementation of research-based knowledge are necessary.
- Education: There is a need to educate more people in specialised fields in which there are major shortcomings, such as speech therapy and audiology.
- Technology: There is a desire to develop artificial intelligence tools that can help with diagnostics and follow-up.
- Quality registries: There is a need to establish standardised national quality registries for the further development of services.