Evidens for integrerede indsatser Mikael Sandlund, M.D., Ph.D . Umeå University, Sweden

1. Evidens for integreredeindsatserMikael Sandlund, M.D., Ph.D.Umeå University, Sweden Or: How to implementevidencebased interventions (in psychiatric and social services) for persons with SMI/psychiatricdisablity – a Swedish perspective.

2. What is psychiatric disability? Impairments in: • Body functions (memory, processing skills) • Activities (tasks and actions by an individual) • Participation (involvement in a life situation) As consequences of a mental disorder. Functioning and disability - a result of complex interactions between the health condition/history of the individual and contextual factors of the environment. (ICF)

3. psychiatric disability / diagnosis • A majority of persons has a psychosis diagnosis (but not all), of which: - A majority has a diagnosis of schizophrenia (but not all). • Most RCT’s on psychosocial interventions include persons with a mixture of diagnosis. • Diagnosis is the main concept according to “psychiatric research tradition”. • Psychosocial interventions (probably) NOT diagnosis specific in most cases.

4. Life situation Homelessness Unemployment Criminality Poverty Drugabuse Services Lack of continuity Not adapted to needs Fragmentized Lowaccessibility Emphasis on medications Psychosocial interventions underdeveloped Transition from hospital-based to community-basedpsychiatricservices: Not alwaysa success story for peoplewith psychiatricdisablity

5. Stigmatization… Contextual factors of the environment; • Fear, Prejudices • Lack of Knowledge • Lack of Reasonable Accommodations • Lack of work/employment opportunities - for People with Psychiatric Disability • Self-stigmatization!

6. What are the needs of persons with psychiatric disabilities? • Housing, support • Employment • Daily activities • Social network, Family support • Medical care: psychiatric needs, somatic needs, needs due to substance misuse

7. What are the needs of persons with psychiatric disabilities? Medical care: psychiatric needs, somatic needs • Medications, as well as psychotherapy develops rapidly • Life expectancy 10 ys shorter! • Causes of death: cardiac, pulmonary diseases, diabetes/obesity – preventable conditions! • Co-morbidity (addiction, somatic disease) - Recent findings point at discrimination in somatic services of persons with psychiatric disability

8. What are the needs of persons with psychiatric disabilities? Employment • Less than 10 % of persons in the target group are employed at the open labor market. • At least half of the persons in that group wish to have a job.

9. Good services for persons with psychiatric disabilities? • Continuity of care • Comprehensive services • Flexibility and around-the-clock accessibility • Facilitative and positive interpersonal relationships with the helper have in-built benefits (Hewitt, Coffey, J Adv Nurs. 2005 Dec;52(5):561-70) • Hope! Recovery orientation.(Slade et al) • User involvement. Involvement of relatives.

10. Common feature: Integration Interventions supported by strong evidence: • Often need multidisciplinary teams • Are comprehensive – include responsibilities for social services as well as psychiatric services (Swedish context) – social psychiatry as well as psychiatric services (Danish context) – and also a lot of other agencies… • Should preferably be delivered in cooperation/integration

11. Winston Churchill: “Never in the field of human conflict was so much owed - by so many - to so few.”

12. Lack of integration…inefficiency…lack of resources “Never in the field of human services was so little owed • by so relatively few • to so many”

13. Is there evidence for all this integration “propaganda”? NO • Some important areas not guided by scientific results (yet) • Several important service components have strong evidence as to efficiency NOT (at all) ALL • Evidence based interventions are offered today

14. Patterns of treatment for patients with schizophrenia in routine psychiatric care • Psychoeducation 43 % • CBT 28 % • Case management 38 % • Work rehabilitation 0 % • Social skillstraining 14 % West et al, Psychiatric Services, 2005

15. background • National guidelines for Psychosocial interventions for persons with schizophrenia or schizophrenia like conditionslaunched by the National Board /Socialstyrelsen/ in 2011. • Based on: The effectiveness of psychosocial interventions for persons with severe mental illness, including those with concomitant substance use disorders, 2009.Öjehagen, Sandlund m fl Ethical and administrative considerations; workshops with user organizations and representatives of services (communes and health care)

17. Evidence of effectiveness of psychosocial interventions (schizophrenia) Strong evidence • Work rehabilitation: Supportedemployment (IPS) • Family interventions • Psychoeducation • Case Management: AssertiveCommunity Treatment (ACT) Good evidence • Social skillstraining • Psychologicaltreatment: CognitiveBehaviouralTherapy(CBT) Almost no evidence • Housing interventions • Daily occupation programs

18. The National GUIDE-LINES • Designed to guide decisions in health services (county councils), as well as in social services (communes) – despite: • Separate founding (county tax, commune tax) • Separate legislation (Health care law, Social service law) • Separate political governance (regional/county parliament, communes parliament). • Separate “labeling concepts” (diagnosis – needs)

19. Guide-Lines for Psychosocial Interventions for Persons with Schizophrenia or Schiz-likeConditions Recommendations (1 – 10) based on: • evidence based knowledge on effects of interventions • severity of the condition (remaining symptoms, impairments, needs) • best aviable knowledge on cost effectiveness or costs of interventions. In all: 28 recommendationsin 10 fields

20. The National GUIDE-LINES • Early interventions • Participation • Psycho education • Family interventions • Psychological treatments • Cognitive training • Social skills training • Vocational training • Housing • Integrated service

21. The National GUIDE-LINES • Early interventions Health services should: • Train GP’s in early detection of signs of psychosis • Persons with early signs of psychosis should be offered direct referral to specialist team (priority 3).

22. The National GUIDE-LINES • Early interventions for persons newly diagnosed with psychosis Health services should: • offer integrated services according to the ACT-model, including family interventions and social skills training, in addition to TAU (priority 3).

23. The National GUIDE-LINES • Interventions to strengthen individual’s participation in care and support Health services AND Social services should: • Offer users shared decision making (SDM) in the planning of treatments and support (priority 3).

24. Shared Decision Making (SDM) • To establish why and when a decision will be made • To convey (full) information about the alternatives • To discuss the alternatives – and the consequences of the alt’s - at an equal level • To make a decision “together” • To make plans about follow-up

25. The National GUIDE-LINES • Psycho educational programs Health services AND Social services should: • Offer the user and his/her family joint education (priority 1). • Offer IMR– Illness Management and Recovery (priority 4). • (if impossible) Offer the family education (prio 3) • (if impossible) Offer the usereducation (prio7).

26. Psycho-educational programs • Programs for patient education include • Knowledge about the illness • How to manage illness and relapses • Knowledge about treatment alternatives • A safe environment to discuss illness and life situation • And… • Reduce relapse rates • Improve psychosocial functioning and • Improve knowledge about illness and treatment alternatives

27. The National GUIDE-LINES Family interventions to reduce stress in the family and as relapse prevention Health services AND Social services should: • Offer users who stay in contact with his/her family or other relatives family interventions (priority 1).

28. Family intervention • Several family intervention models are effective in reducing relapse and inpatient treatment, and in improving compliance with treatment • Common features of these programs • Intervention > 9 months • Creating a positive alliance with relatives • Crisis intervention • Problem solving • Knowledge about illness and treatment • Reducing negative aspects of emotional climate in the family (hostility, criticism and overinvolvement)

29. The National GUIDE-LINES • Cognitive training to increase functions Health services should: • Offer persons with remaining symptoms, cognitive and social skills impairments Integrated Psychological Therapy – Cognitive training – IPT-k (priority 1).

30. The National GUIDE-LINES • Independent living skills training Health services AND Social services should: Offer persons who need better social skills training in accordance with the ”ESL-model” – Ett självständigt liv(priority 2).

31. Independent living skills program Group treatment with role play with several modules: • Medication management • Symptom management – early detection of relapse • Substance abuse management • Recreation for leisure • Basic conversation skills • Interpersonal problem solving • Friendship and intimacy

32. The National GUIDE-LINES • Vocational rehabilitation (to increase participation on labor market) Health services AND Social services should: ”under their areas of responsibility AND in contact with the National Social Insurance Agency and the National Employment Agency” • Offer users who are unemployed and motivated for competitive employment, individually tailored support according to the IPS-model (Individual Placement and Support) – place then train - (priority 1). Health services AND Social services can: • In exceptional cases offer pre-vocational models (train then place) (priority 10).

33. Supported employment • “Place then train” in competitive work situation • Avoidance of pre-vocational training • Minimal screening for employability “wish to work” • Individualized placement and support • Team-based time-unlimited support • Consideration of client preferences • Integration with support from the mental health care system

34. The National GUIDE-LINES • Daily occupation Social services should: • offer individually tailored daily occupation, day centers, with regular follow-up, suitable for the person (priority 3).

35. The National GUIDE-LINES • Accommodation: Social services should: • Offer homeless persons a sustainable accommodation (priority 1). • Offer housing according to the ”Housing first-model” (without conditions as compliance to treatment etc) (priority 3). Social services can in exceptional cases: • offer homeless persons accommodations according to a step-wise model, but independent living must be the goal (priority 10).

36. The National GUIDE-LINES • Co-ordination/Integration of services to assure the person continuity of care Health services AND Social services should: • Offer persons with schizophrenia who are high users of care, at high risk of inpatient care, drop out of treatment - intensive case management according to the ACT-model - Assertive Community Treatment (priority 1). Health services AND Social services can: • in exceptional cases offer less intensive case management (priority 10).

37. And now: Implementation! Policy instruments • Hard governance: the use of direct and compulsory steering forms to ensure compliance among local actors – ”sticks” • Soft governance: non-binding self-regulation forms based on flexible instruments, information and guidance – ”carrots” (MaycraftKall 2011; Lindqvist, Markström, Rosenberg 2010)

38. Instrument types • Regulatory steering: legislation, rules, directives, binding guidelines • Financial steering: positive incentives, ”free money”, taxes, charges • Information steering: general information, recommendations, newsletters Sidfot

39. The case of Sweden • Tradition of soft governance– explained by the principle of localindependence • Tradition of financialsteering(”carrots”) and cautiousinformation steering • Traditional:shortsightedprojects with federal funding (in advance). • Recent:agencies that can show goodpractice get extra money (after delivery). Sidfot

40. Independent! • The local authorities (communes, county councils) in Sweden are independent. They rise their own money (taxes), they have their own parliaments. • The roles of federal agencies are mainly support and surveillance.

41. Some implementation mistakes • We substitute our perceptions for those of potential users • We use intervention creators as intervention communicators • We assume that information will influence decision-making • We advocate single interventions as the solution to a problem Dearing 2007

42. Good hope… • A number of Supported Employment projects are operating or in the process of getting started • (A few) Good examples of ACT-like teams are present • The involvement of users and relatives becomes more frequent

43. Stigmatization? • Only a few politicians have the wish to be connected to the needs and policies important to people with psychiatric disabilities. (as long as there are no current scandals in today's newspaper I rather keep away from this area…) On the other hand: if effective and user friendly services are developed the area will be more attractive (also to politicians….)

44. Mikael.sandlund@psychiat.umu.se