Presentation of indicators and preliminary results
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1 Plenary session Presentation of indicators and preliminary results Simon VASSEUR-BACLE, Project Manager WHO-CC Anaïs VAGLIO, Project Manager WHO-CC
2 What is empowerment? In a Mental Health context, empowerment refers to the level of choice, influence and control that people using Mental Health services can exercise over events in their lives. The key to empowerment is the removal of formal or informal barriers and the transformation of power relations between individuals, communities, services and governments. Indicators definition The WHO / E.C. Project for empowerment of users in mental health (29-212) defined 19 indicators divided in 4 domains: - Protection of human rights and tackling stigma and discrimination - Involvement in decision-making - High quality care and evaluation - Access to information and resources
3 Objectives Benefit from perspectives of users, families and every stakeholder or actor of the care system (health and social professionals, elected officials, NGOs, ) Include every country of the Europe zone Test indicators and target questions Gather best practices examples in users empowerment in Mental Health Provide concrete and implementable recommendations. Method 19 indicators presented during the Leuven Congress, spring 29 Target questions and comments Proof reading by french and international experts Wide dissemination (printed and electronic versions) and available online
4 LIMITATIONS OF THE STUDY Complex questions and simple answers Complex questions and national contexts COMMENTS OF THE RESPONDANTS On the structure of the questionnaire Length of the questionnaire, Questions size, lack of readability, feeling of repetition for some questions, technical terms, understanding for users, restricted answers possibilities, level of answering (local / national) On the contents Empowerment is a large concept covering more domains.
5 n n 278 Sweden 1 Italy 16 Estonia 1 England 9 Finland 1 Greece 8 Wales 1 Spain 5 Croatia 1 Belgium 5 Denmark 1 Romania 4 Portugal 1 Malta 3 Morocco 1 Canada 3 Hungary 1 Luxembourg 2 Ireland 1 United States 2 Australia 1 Swiss 2 Norway 1 Poland 2 The Georgia 1 The Netherlands 2
6 Distribution, (N=278) n Users 39 (14%) Families 63 (23%) Professionals 12 (43%) Other 56 (2%) Distribution, Other countries (N=78) n Users 22 (29%) Families 1 (13%) Professionals 27 (35%) Other 19 (24%)
7 Part 1 : PROTECTION OF HUMAN RIGHTS AND TACKLING STIGMA AND DISCRIMINATION
8 Indicator n 1: People using Mental Health services have the right to vote
9 Indicator n 2: People using mental health services have the right to hold public office
10 Indicator n 3: The country has employment legislation that forbids discrimination in employment on the basis of diagnosis or history of Mental Illness
11 Indicator n 4: The country has employment legislation to cover the needs of family carers
12 Santé mentale en Europe: Indicateurs favorables à l'autonomisation des usagers et aidants DROITS et STIGMATISATION 1. Voting right Eligibility + 3. Employement discrimination O 4. Employement - ++ : 1 à 8%, + : 8 à % O : à % - : à 2 % -- : 2 à %
13 COMMENTS PART 1 : PROTECTION OF HUMAN RIGHTS AND TACKLING STIGMA AND DISCRIMINATION Facilate voting rights : Ex: Mobile polling station (Canada) Eligibility : Coming-out of elected people Destigmatize : Mad Pride Paris, 214 Carers needs: Few days of vacation paid for careers (UK) Credit on taxes for helpers (Nouvelle-Ecosse, Québec)
14 Part 2: INVOLVEMENT IN DECISION MAKING
15 5a.People using mental health services are involved in the development of mental health policy and legislation
16 5b.Families of people using mental health services are involved in the development of mental health policy and legislation
17 6a.People using mental health services have authority in the process of designing, planning and implementing mental health services
18 6b.Families of people using mental health services have authority in the process of designing, planning and implementing mental health services
19 Santé mentale en Europe: Indicateurs favorables à l'autonomisation des usagers et aidants IMPLICATION 5a et 5b. Health Politicies +* 6a. For services (users) O / - 6b. For services (families) O ++ : 1 à 8%, + : 8 à % O : à % - : à 2 % -- : 2 à %
20 COMMENTS PARTIE 2 : INVOLVMENT IN DECISION MAKING Politics and legislations Users and family s organisations are represented in Regional health agencies and commissions in Mental Health Insitutions Service management Participation of users and families to service s staffs/ administrative boards of MH insitutions / Municipalities Health Councils Finland : various training sessions for users in order to give them a capability to act as experts of experience in hospital wards, community care and inside the education system.
21 Part 3 : HIGH QUALITY CARE AND EVALUATION
22 Indicator n 7: People with Mental Health problems and their families have access to appropriate Mental Health services
23 Indicator n 8: People using Mental Health services have access to general health services like other citizens
24 Indicator n 9: People using Mental Health services have the opportunity to be actively involved in the planning and review of their own care
25 Indicator n 1: Families of people using Mental Health services have the opportunity to be actively involved in the planning and review of care
26 PARTIE 3 : HIGH QUALITY CARE AND EVALUATION COMMENTS Quality of Mental Health Services To develop community care Housing first, mobile therapeutic teams, Crisis centers opened 24h/7d General hospital services Free acces Work in collaboration with GPs, Emergency units, Psychiatric nurses., Lyon : specialised units for dental cares and surgical care where there is a specialised medical staff Planification and Care Evaluation Sectorisation and type of hospitalisation (normal or compulsory) prevent freedom of choice for a practicioner Australia: a review system carried out independently from the practitioners. People under compulsory care can also participate Role of the families: to improve their involvement, Guardianship, therapeutic education
27 Indicator n 11: 11a.People using Mental Health services are involved in inspection and monitoring of mental health services
28 11b.Families of people using Mental Health services are involved in inspection and monitoring of mental health services ,
29 Indicator n 12: 12a.People using Mental Health services are involved in education and training of staff working in Mental Health services
30 12b.Families of people using Mental Health services are involved in education and training of staff working in mental health services
31 Santé mentale en Europe: Indicateurs favorables à l'autonomisation des usagers et aidants QUALITE et EVALUATION DES SOINS 7. Apropriate Mental Health Services O 8. General Health Services + / Care evaluation (users) O 1. Care evaluation (families) - 11a et 11b. Services Evaluation - 12a et 12b. Professional s training - / : 1 à 8%, + : 8 à % O : à % - : à 2 % -- : 2 à %
32 Part 3 : COMMENTS Control and evaluation of services: Switzerland : an evaluation tool (QUINT-ESSENZ) with a user s participation Training of the staffs by users : Teaching in Universities United Kingdom (King s College, London) : The Service User Research Enterprise (SURE)
33 Part 4 : ACCESS TO INFORMATION AND RESOURCES
34 Indicator n 13: People using mental health services have a right to access their medical record
35 Indicator n 14: People using mental health services have access to affordable legal support
36 Indicator n 15: 15a. People using mental health services have equitable access to state benefits
37 15b. Families of people using mental health services have equitable access to state benefits
38 PARTIE 4 : ACCES TO INFORMATION AND RESSOURCES COMMENTS Medical File: Good information but difficulties for access No direct access (GP) UK : Cost (5 ) Accompaniment : information on procedures (Flyers in hospitals), organisations Legal Assistance: Canada : AGIDD-SMQ Juridic Accompaniement and help (depending on the level of income) Advocacy- Social assistance Families and users NGO s, specialized social workers United Kingdom (Wales) : Citizens Advice Bureau, National Advocacy Service
39 Indicator n 16: 16a.Public funds are available for users organisations
40 16b.Public funds are available for families organisations
41 Indicator n 17: 17.a:Accessible and appropriate information about services and treatment is available for people using mental health services
42 Santé Mental mentale health in en Europe: Indicateurs Indicators of favorables empowerment à l'autonomisation of users des and usgers carers et aidants 17.b:Accessible and appropriate education about services and treatment is available for people using mental health services
43 Indicator n 18: 18a.Adequate information is available for families of people using mental health services to support them in their role as carers
44 18b.Adequate education is available for families of people using mental health services to support them in their role as carers
45 Indicator n 19: The welfare benefit system compensates for the financial implications of being a carer
46 Santé mentale en Europe: Indicateurs favorables à l'autonomisation des usagers et aidants INFORMATIONS et RESSOURCES 13. Medical records access Affordable legal support O / - 15a. State benefits (users) ++ 15b. State benefits (families) Public funds avalable O 17a et 17b. Information/Education about services and treatments 18a et 18b. Information/Education for carers O / - O usagers ++ familles 19. Financial support for carers -- familles ++ : 1 à 8%, + : 8 à % O : à % - : à 2 % -- : 2 à %
47 PARTIE 4 : ACCES TO INFORMATION AND RESSOURCES-COMMENTS Public fundings Funding for NGO s which propose information and education on Mental Health (Mutual support groups) Information et formation Psycom: Public body for information, communication and education in Mental Health ATD quart-monde: Co-training for both users and professionnals UNAFAM: Education for families Prospect-famille Malta: Book Stars Shine Brightly in the Sky: journeys of hope of relatives of mentally ill persons for helpers (Mental Health Association / St Jeanne Antide Foundation) Hungary, Budapest: Awakenings Budapest Foundation Financial Support for carers Difficulties in implemtation
48 Thank you for your attention!
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