Delivering experiential knowledge: repertoires of contention among Swedish mental health service user organisations

Figures & data

Table 1. Network organisations, with information about focus and organisational size

Organisation	Year established	Focus	Members	Local associations	Employees at central office/on national projects	Total income (Thousand Euros)
National Partnership for Mental Health (NSPH) Nationell samverkan för psykisk hälsa	2007	Umbrella organisation for Swedish MHSUOs	13 organisations	20 regional networks	9	810
Hjärnkoll	2015	Informational and attitude-changing activities run by the member organisations of NSPH	13 organisations	11 regional	10	1,076

Table 2. MHSUOs ordered by membership size, with information about focus and organisational size

Organisation	Year established	Focus	Members	Local associations	Employees at central office/on national projects	Total income (Thousand Euros)
The Autism and Asperger Association Autism- och Aspergerförbundet	1973	Autism-spectrum disorders	15,565	24 district, 3 local	10	1,383
National Association Attention Riksförbundet Attention	2000	Neuropsychiatric disabilities	15,553	57 (2 regional)	18	3,345
Swedish National Association for Social and Mental Health (RSMH) Riksförbundet för Social och Mental Hälsa	1967	Social and mental health problems	7,353	122	19	1,647
The National Schizophrenia Association Schizofreniförbundet	1987	Psychosis disorders	3,015	47	4	616
Healthy & Free Frisk & Fri	2003^2	Eating disorders	2,670	20	10	575
Swedish National OCD-Association Svenska OCD-förbundet	1989	OCD disorders	1,961	9 (2 regional)	4	481
Swedish National Association for Rights, Emancipation, Health and Equal Treatment (RFHL) Rättigheter, Frigörelse, Hälsa och Likabehandling	1965	Addiction, mental health problems, and social vulnerability	1,460	26	9	380
Anxiety Disorders Association of Sweden (SÅSS) Svenska Ångestsyndromsällskapet	1992	Anxiety disorders	884^3	12	2	107
National Association Balance Riksförbundet Balans	1997	Affective disorders	852	12	3	191
Tilia	2012	Mental health for youth 12–30 years old	400	4	1	77
Self Harm and Eating Disorders Organisation (SHEDO)	2008	Self-harm and eating disorders	230	24 local representatives	4	221
Organised Aspergers (OA) Organiserade Aspergare	2006	Asperger syndrome and high functioning autism	208	6 district	8	2

Table 3. Target group and explicit goals

			Number of organisations (N = 12)
Target group	People with lived experience		12
	Relatives		8
	Others		2
	By diagnostic group		9
	Other criteria		3
Explicit goals	Broader issues	Protection of social and civil rights	6
		Preventative interventions	3
		Adaptation of the labour market	2
		Adaptation of the school system	1
		Fair and secure social insurance	1
	Service issues	Quality of services	7
		Accessibility of services	3
	Member support	Provide support to service users	7
		Provide support to relatives	5
		Provide social contact for members	2
	Knowledge	Spread knowledge to the public	8
		Increase research and knowledge	3
	Participatory relationships	Service user involvement and participation	6
		Networks for organisations	4
		Cooperation with authorities	2

Table 4. Organisational activities

Activities			Number of organisations (N = 12)
Education activities	Internal education activities	Lectures with members as the audience	7
		Education programs for members	7
		Study circles	2
	External education activities	Workshops/seminars/conferences/lectures	11
		Production of educational material	10
		Information campaigns	8
		External education programs	8
		Research collaborations	5
		Surveys/data collection	4
		Tutoring assignments	2
Social activities		Member camps	5
		Field trips	3
Self-help/Peer support		Online support (chat/forum)	6
		Telephone support	4
		Individual support/self-help groups	2
Advocacy activities	Popular	Taking part in public debate	9
		Rights protection/individual advocacy	4
		Participation in/organising goal-oriented events	3
		Reoccurring and goal-oriented campaigns	2
	Invited	Service-user involvement in relation to government departments and public authorities	11
		Statements of opinion, petitions	6