Annual Report 2015

26th May 2016

Table of Contents Page

Foreword 5

Chapter 1: Background 8 Introduction 9 Vision, Mission, Commitment 9 Organisational set-up 11 Vacancies as on 31st December 2013 in order of priority 11 Management Committee Meetings 11 The Agenda up to end 2018 12

Chapter 2: Performance 16 Implementing the Mental Health Act within the Office 17 Mental Health Database Monitoring and Management System 18 Analysis of applications processed by the Commissioner 19 Mental Health Review Committee 25 Curators 25 Interface with mental health service provider entities 26 Training for patients and carers in patient advocacy 29 Interface with the Police 29 Media Presence and Participation 29 Influencing Legislation 30 Reform of Justice (Civil Procedure) Legislation 30 Other Legislation 32 The Vulnerable Voter 33 Influencing Policy 35 Parliamentary Committees on Health and Social Affairs 36 Mental Health 37 Substance Abuse 39 Child and Adolescent Mental Health Services (CAMHS) 40 Youth Policy 41 Investigation of Complaints 42 Allegations of breach of human rights 42 Customer Relations Unit 43 Visits and Audits 43 Visitation Report 2015 43 Incident Reporting 48 Working in Partnerships 49 Meetings 49 Working together on specific actions 50 Health Literacy 50 Mental Health and Well-Being Expo 53 Working with the Ministry responsible for Health 54 Country Cooperation Strategy with WHO Europe 54 Organ and Tissue Donation 55

Selection Boards 56 Membership of EU Presidency Teams 56 Other Health Policies and Strategies 56 Participation in Conferences, Seminars, Workshops & other events 57 Participation in local events 57 Participation in Overseas Conferences 60

Chapter 3: Professional Development 70 Continuous Professional Development 71 Involvement in Academic and Professional Development of others 73

2015 in Pictures 76

Appendices 80 Appendix 1: Functions of the Commissioner 81 Appendix 2: Mental Health in Youths 83 Appendix 3: Proposal for extending care to persons with mental Health problems in association with psychoactive substance abuse 91 Appendix 4: Report on Visits to Mental Health Licensed Facilities Conducted in 2015 99 Appendix 5: Incident reporting in mental health licenced facilities 2015 141 Appendix 6: Launch of the Malta Health Literacy Survey Report 2014 155 Appendix 7: Proposal for legislation on organ and tissue donation 173

...promoting and upholding the rights of people suffering from mental disorders

...jinġiebu ‘l quddiem u jiġu rispettati d-drittijiet ta’ nies li jbatu minn diżordni mentali

Foreword In its fourth full year of operation, the Office is proud to report steady progress in the implementation of its assigned responsibilities as the authority to promote and protect the rights and interests of persons with mental disorders in Malta and Gozo.

Following the full entry of the new Mental Health Act in October 2014, the first priority was to ensure that the strict timeframes of involuntary care are fully respected by all concerned, that patients are reviewed regularly and not detained against their will longer than is necessary, and that patients are formally discharged from involuntary care or detention where applicable. This has practically been achieved but it is unfortunately not supported by the necessary IT infrastructure that can hasten the administrative process and provide less laborious ways of obtaing performance data. In this report you will find the first outcomes statistics of the new legislative set-up. 801 applications and notifications processed, 435 persons detained against their will for observation monitored, 224 treatment or detention orders issued, 100 discharges approved and 12 persons certified as lacking mental capacity. More importantly we commenced the year with 54 persons on long term treatment order as hospital inpatients and we ended the year with 48 persons on long term treatment order, of whom more than half (25 out of 48) were on community treatment orders, a notable and welcome shift towards monitored involuntary care in the community.

The second priority was the assessment and quantification of the level of compliance with the rights of persons with mental disorders within the various service provision set-ups. Improvements have been made since the visit in 2014, although the extent cannot be measured tangibly. Patients seem to be better kept. Staff seemed more receptive to the needs of the patient and more collaborative. Medicines are being stored in a better way and the wards are somewhat cleaner. We found no evidence of torture or cruel, inhuman or degrading treatment within mental health licensed facilities in 2015.

However, beyond basic medical care which is being provided, interventions and activities that help patients in wards to maintain or regain lost skills are sorely lacking. Smoking policies need revision. The vast majority of service users (89%)

5 state that they feel treated with repect and dignity. An overwhelming 93% of users feel that staff were kind and caring towards them. The same cannot be said about safety and the care environment in wards. Safety measures and the physical environment are in dire need of improvement in most wards in Mount Carmel Hospital and in both wards in Gozo General Hospital. Substantial improvements are necessary for the objective of dignified care in a safe and suitable environment to be reached. Respect and dignity towards patients by dedicated staff cannot be expected to make up for lack of investment in the physical environment of care facilities.

Patients are still far from being empowered about their rights. Less than 25% claimed that their rights had been explained to them. Although nearly two thirds (65%) of repondents feel they have participated in their care as much as they wished, it is difficult to assess the extent of such particiaption. Patients tend to be reluctant to submit reports on threats from staff or other patients, possibly fearing retribution. Privacy is not always being respected and seems to be very low on the priority list of certain staff. There is no established policy on use of mobile phones, making communication more difficult and increasing risk of isolation.

Documentation in patient files is conducive to safe quality care. The presence of informed consent to treatment forms in 63% of files is encouraging. 40% of files had written evidence that a responsible carer had been identified by the patient. It is unacceptable that the working diagnosis was easily retrievable only in 40% of patient files. Multidisciplinary care plans were absent in 90% of files. The most shocking finding is that only 1% of files contained all the requirements of the Mental Health Act.

The third priority is advocacy for reform of mental health and well-being services. A revised mental health policy, strategy and action plan reflecting the principles of the Mental Health Act is essential. The health literacy survey has shown serious gaps in mental health promotion and prevention that must be addressed. Mental disorders must be mainstreamed within the health sector with acute psychiatric care moving to the acute general hospital setting, and the mainstay of care must be community- based where the general practitioner is supported by community services and 6 specialised services. Dignified residential accommodation is required for long term patients and those who unfortunately do not make it through rehabilitation.

Care services for children, adolescents and youths with psychiatric problems (CAMHS) should follow youngsters until the age of 25 years and transition to adult services should happen gradually and when the youngster is ready for transition. Young people with challenging behaviour have the right to adequate aftercare and rehabilitation leading to their social integration. This is best achieved through specific supervised residential facilities in the community.

Substance abusers are disrupting the care processes for deserving cases within Mental Health Services. This is a complex issue which requires a concerted approach involving mainly Mental Health Services, FSWS, Sedqa, Caritas and OASI.

Mental health must also be mainstreamed outside health care settings involving education, housing, social welfare, social security, employment, youth services, sport, local councils, correctional services, and probation services. Sustainable employment prospects for persons with mental disorders remain poor. There is a very high economic cost tied to mental health problems in terms of reduced quality of life, loss of productivity, and premature mortality.

This report demonstrates the extensive work performed by the small and multi-skilled team at the Office in 2015. I thank them all for their professionalism and hard work, for their loyalty towards vulnerable persons and for the achievements outlined in this report. This Office will continue to provide effective strategic leadership in ascertaining that the rights of persons with mental disorders are protected and upheld.

Dr John M. Cachia 26th May 2016 Commissioner

Chapter 1: Background 8

Introduction

The Commissioner for the Promotion of Rights of Persons with Mental Disorders is established in Article 5 of the Mental Health Act (Cap 525). Appendix 1 lists all the functions assigned to the Commissioner by the Act. This report covers the performance of the Office of the Commissioner from 1st January 2015 up to the 31st December 2015 and is being drawn up in accordance with Article 6 (1) (n) of the Mental Health Act.

The Office is proud to see that as a result of its efforts at mobilising synergies and managing divergent opinions, it has played a vital role in the implementation of the new timeframes envisaged in the Mental Health Act. The Office acknowledges the effort of all stakeholders at service management and delivery levels to meet the deadlines imposed by the law. This report outlines achievements and indicates areas where improvement is expected in the forthcoming year.

This Office has continued to provide a voice to vulnerable persons with mental disorders. Maximisation of the potential of persons with mental disorders is not only a question of social justice but also critical for the sustainability of our health system and the prosperity of our society. The burden of mental disorders is increasing exponentially with the modernisation of our society and those who are not coping with this burden merit active consideration and support.

Vision, Mission, Commitment

The vision of this Office is that of an all-inclusive society, wherein persons with mental disorder are fully empowered to maximise their health, to contribute actively to the community in all spheres of life, including but not limited to the labour market, and wherein the well-being, sustainability and prosperity of the community at large can be positively enhanced and improved.

The mission of this Office is to promote and protect the rights and interests of persons with mental disorders, such that they and their caring others can benefit

9 from a better quality of life through the maximisation of their potential as valued members of society and as active participants in the care process.

The Office strives to achieve this mission through the adoption of a person-centred approach, empowerment, advocacy, strategic leadership, influencing policy, monitoring relevant developments and best practice, fostering a quality improvement culture, and through working in partnerships and facilitating synergy within an all- inclusive society. The core key commitments of this Office are:

• equal opportunities and equal treatment, • the elimination of all forms of discrimination, and • zero tolerance to abuse.

In all its work since it was set up in 2011, this Office has provided effective strategic leadership in ascertaining that the rights of persons with mental disorders are protected and upheld. This positive experience should provide valuable insights to the successful implementation in the coming years of the Patients’ Charter of Rights emanating from the Health Act (Cap. 528).

Organisational set-up

The organisational set-up of the Office as on 31st December 2015 was as follows:  Dr John M. Cachia, Commissioner  Dr Miriam Camilleri, Consultant in Public Health Medicine, Head of Services  Dr Jesmond Schembri, Officer in Grade 4, responsible for Customer Relations  Ms Anna Debattista, Officer in Grade 4, joined on 1st December 2015  Ms Natasha Barbara, Assistant Director, Research, Policy Review and Investigation and Head of Administration  Dr Antonella Sammut, Resident Specialist in Public Health Medicine  Dr Stephen Zammit, Legal Officer  Ms Gertrude Buttigieg, Principal Speech & Language Pathologist responsible for Communications  Ms Mariella Maurin, Assistant Principal  Mr Emanuel Zammit, Messenger/Driver

Ms Rose Curmi, Officer in Grade 5 and Head of Administration commenced pre- retirement leave in July 2015 and formally retired in November 2015 after more than 40 years of hard work and dedicated public service. She was responsible for the successful set-up and on-going management of the physical and administrative aspects of this Office since its inception in October 2011.

Vacancies as on 31st December 2015 in order of priority

 Case Management Officer – Health Care Professional (Scale 7-9) - 1  Clerical Staff (Scale 14) - 1  Expert Services (in the area of accountancy and audit) – contract for service

Management Committee Meetings

Management Committee Meetings were held on a regular basis. During 2015 a total of thirteen meetings (ten ongoing business meetings and three special meetings) were held as follows: 16 January, 12 February, 5 March, 21 April, 20 May, 17 June, 7July, 29 July (to discuss visits and inspections schedule); 24 August, 8 October

(Expo Final Arrangements), 4 November, 1 December and 21 December (Prioritisation Exercise 2016-2018 Initial Meeting).

The Agenda up to end 2018

In its last meeting for 2015, the Management Team commenced the reflection process which will set out the objectives, actions and expected outcomes of the Office for the next three years 2016-2108. Faithful to its mission to promote and safeguard the rights of people suffering from mental disorders, the Office will:

OBJECTIVE 1 – Pursue the obligations that emanate from the Mental Health Act EXPECTED OUTCOMES  Patient awareness and understanding of their rights  Patient empowerment to speak for their rights  Dignity for patients  Respect for privacy  Respect for patients by professionals  Respect for professionals by patients  Active support for the responsible carers  Addressing legitimate complaints that are not seen to by service providers  Use of schedules to improve quality of care  Timeframes and schedules are respected  Continuous monitoring, follow-up and after care to avoid deterioration  Action against discrimination and stigma ACTIONS 1.1 Introduce an effective IT-based system 1.2 Effective and comprehensive multidisciplinary care plans 1.3 Effective use of consent forms to convey information on care 1.4 Continue the dialogue with service users informing of their rights and responsibilities 1.5 Protect those who require social care without the need to subject them to unnecessary restrictions to personal liberties 1.6 In-depth analysis of the Mental Health Act

OBJECTIVE 2 – Ensure continued accountability of public funds allocation and explore other funding routes beyond current central government funding arrangements EXPECTED OUTCOMES  Better links between budget and operational performance  More independence from direct Ministry funding ACTIONS 2.1 Develop internal operational and financial audit 2.2 Build a direct relation with the Ministry of Finance to secure support for initiatives 2.3 Develop specific expertise in applying for and managing EU funds, including co-funding arrangements 2.4 Consider particular sponsorships and partners for particular initiatives and events 2.5 Develop links with the Malta Community Chest Fund, particularly focusing on funding of research initiatives

OBJECTIVE 3 – Increase the independence, public visibility and public awareness of the Office of the Commissioner EXPECTED OUTCOMES  Become more a voice for patient rights and less a government department  Obtain political commitment and goodwill for mental health and wellbeing at Ministry level  Foster a Mental Health in All Policies approach  Develop international cooperation ACTIONS 3.1 Work towards increasing the independence of the Office 3.2 Foster a mental public health approach 3.3 Ensure representation of the Office on relevant boards and committees 3.4 Ensure invitation and participation of the Office in relevant events and meetings 3.5 Commence a Mental Health in All Policies dialogue with relevant non-health departments, agencies and organisations

3.6 Establish links with foreign agencies and authorities that work on the same agenda as our Office

OBJECTIVE 4 – Provide strategic advocacy for change in mental health service delivery by entities in public health system EXPECTED OUTCOMES  Persuade people in the health sector to be committed to mental health  Health promotion in mental health  Consolidation of community services  Involvement of family general practitioners  Improvements of the physical environment where care is delivered  Acute psychiatry from general hospital settings at par with all other acute conditions  A functioning outreach service  A functioning crisis intervention service ACTIONS 4.1 Set-up and chair a focus group with relevant invited stakeholders from within the health sector: health promotion, disease prevention, public and private primary care, general and specialised hospital care, rehabilitation, geriatrics 4.2 Forge an alliance with the Health Promotion Department 4.3 Dialogue with general practitioners, primary care providers, and community pharmacists 4.4 Push for better mental health in maternity services 4.5 Detailed review of the pharmaceutical prescribing of psychiatric and psychotropic medication at national level 4.6 Ensure that public mental health services deliver the appropriate changes and improvements

OBJECTIVE 5 – Build alliances and work jointly with the various stakeholders including the non-health public sector, civil society and NGOs, the public at large, and the media

EXPECTED OUTCOMES

 Bring together NGOs and work more with NGOs, building on the success of the Expo 2015  Better awareness to mental health among public service employees  Effective partnership initiatives with o education o social security and social welfare o employment  Create a focus group for interested journalists from media houses and newspapers ACTIONS 5.1 Keep mental health and wellbeing always on the agenda in all fora linked to social dialogue and integration 5.2 Maintain a special focus on children, adolescents and youths (aged <30 years) 5.3 Widen the agenda for better mental health at the workplace and employment 5.4 Continue effective dialogue with social services and social welfare 5.5 Create a focus group for interested journalists from media houses and newspapers

This Office will elaborate a number of measurable deliverables linked to each action point and teams of staff members will be assigned specific responsibilities for the various parts of the work required to implement this agenda by end 2018. We live in a society in which the burden of mental disorder appears to continue to be on the rise. Employment patterns and pressures on family structures are altering the caring options within society. The challenges of economic dependencies and poverty risks associated with mental disorder are well known.

Whilst recording satisfactory progress in most of the areas of attention and strategic priorities tackled in the first four years 2012-2015, the Office has reviewed its agenda and its priorities for the coming three years 2016-2018 in order to continue to be aligned with and respond to the needs and aspirations of these vulnerable members of our society.

Chapter 2: Performance 16

The main areas of performance which the Office has undertaken throughout 2015 can be grouped under the following headings:  Implementing the Mental Health Act within the Office  Influencing Legislation  Influencing Policy  Investigation of complaints  Visits, investigations and audits  Working in partnerships through: o Meetings o Working together on specific actions o Conferences, seminars, workshops and other events

Implementing the Mental Health Act within the Office

The Mental Health Act, Chapter 525 of the Laws of Malta is the legislation which now regulates the provision of mental health services, care and rehabilitation whilst promoting and upholding the rights of people suffering from mental disorders. The sixteen new schedules accompanying the Act entailed a number of administrative and operational changes within the Office, in order to align the work of the various officers with the obligations and timeframes that the Act places on the Commissioner. There are fifteen (15) Standard Operational Protocols (SOPs) within the Office to ensure consistency in the receipt, registration, and approval or otherwise of the various applications or notifications, and in order to ensure that the necessary monitoring and follow-up of outcomes is carried out effectively, consistently and in a timely manner. With minor operational modifications these SOPs were consistently applied. A revision of the SOPs will be undertaken during 2016, alongside with the assignment of duties and responsibilities in line with the Agenda 2016-2018 described in the previous section of this report. In the absence of a dedicated IT system, these SOPs are still being perused by all staff officers from a shared server space.

Mental Health Database Monitoring and Management System Despite further requests dating back to 2012, this Office remains without a proper IT- based solution to enable it to efficiently manage, monitor and follow admissions and their outcomes in conformity with the requirements of the Mental Health Act.

During 2015, the Office continued to press for a comprehensive IT solution. In the spring of 2015, the Office facilitated a dialogue process to help IMU-Health to refine the requirements of a mental health IT system that addressed the specific needs of both the Commissioner and the service provider entity with the necessary safeguards and with full respect of the separate roles of the two main users. There was input by staff from this Office, IT services at Mater Dei Hospital, and nursing staff and senior management of Mental Health Services under the direction of IMU- Health. Patient flow processes depicting voluntary admissions, involuntary admissions (including for minors), and Community Treatment Orders (CTO) were refined and agreed, but the process was not finalised, since further meetings did not materialise.

An Excel-based database and filing system devised, planned and implemented internally in 2014 continued to be the rudimentary basic arrangement utilised by the Office to register and monitor the outcomes of care applications for persons to be detained against their will either in hospital or in the community, of requests for restriction of freedom of communication, and for certifying lack of mental capacity. This temporary arrangement is also saved onto the same shared server space for ease of access by all staff officers involved in the processing of the schedules linked to the Mental Health Act.

The lack of a comprehensive IT solution is resulting in excessive bureaucracy in the internal processing of schedules and unavoidable time after hours in order to ascertain that the issue of approvals by the Office respects the timeframes imposed by the Act. Furthermore, the system of follow-up and reminders is not efficient and does not allow direct alert of the caring teams and the ward managers themselves. Finally, the analysis of the data from the applications for epidemiology and statistical purposes is being done manually with obvious problems linked to coding, classification and retrieval of comprehensive feedback. 18

Analysis of applications processed by the Commissioner During the year 2015, a total of 801 schedules were submitted to the Office. Of these 446 were notifications (namely Schedules 2, 8, 13), with the commonest being notifications of involuntary admissions for observation (423). 355 were applications which needed a decision from the Office. Of these 342 were approved and 13 were not granted. 224 approvals for restriction of rights of patients as provided by the law were granted for treatment reasons (Schedules 3, 4, 5, 7) and 7 approvals for restriction of communication (Schedule 1). 99 releases from treatment or detention orders were granted (Schedules 6, 10). 12 persons were certified as lacking mental capacity (Schedule 11). The detailed breakdown of this activity was as follows:

No. Description Received Refused Approved

1 Restriction of Communication 8 1 7

2 Involuntary Admission for Observation 423 Not applicable

3 Involuntary Admission for Treatment Order 111 3 108

4 Extension of Involuntary Admission for 40 2 38 Treatment Order 5 Continuous Detention Order 36 1 35

6 Release from Treatment/Detention Order 86 0 86

7 Community Treatment Order 45 2 43

8 GP Care in the Community 3 Not applicable

10 Release from Community Treatment Order 14 1 13

11 Certification of Lack of Mental Capacity 15 3 12

12 Revocation of Lack of Mental Capacity 0 0 0

13 Admission of Minors 20 Not applicable

14 Application for Irreversible Treatment Not applicable

The table below summarises the total number of persons whose rights were restricted as on 31st December 2015. This table indicates that the prevalence of involuntary care is around 50 inpatients daily, with a further 25 persons receiving compulsory care in the community.

No. Description In Force Approved/Received

1 Restriction of Communication 1 7 approved

2 Involuntary Admission for Observation 9 423 received

3 Involuntary Admission for Treatment Order 19 108 approved

4 Extension of Involuntary Admission for 2 38 approved Treatment Order 5 Continuous Detention Order 23 35 approved

6 Release from Treatment/Detention Order not applicable 86 approved

7 Community Treatment Order 25 43 approved

8 GP Care in the Community not applicable 3 received

10 Release from Community Treatment Order not applicable 13 approved

11 Certification of Lack of Mental Capacity 4 12 approved

12 Revocation of Lack of Mental Capacity not applicable 0 received

13 Admission of Minors not applicable 20 received

14 Application for Irreversible Treatment not applicable not applicable

Our Office received and processed 423 notifications for involuntary admission for observation within our mental health institutions under the new law – slightly more than one (1) application daily. Of these: 95.3% were adults, 4.7% were minors less than 18 years of age. These applications were in respect of 371 different persons who needed involuntary admission for observation. An important quality of service characteristic of acute admissions for mental disorder is re-admission rates and the involuntarily admitted persons were sub-divided as follows: Type Persons Admissions 1 Admission 326 persons 326 admissions 1 Admission + 1 Re-admission* 38 persons 76 admissions 1 Admission + 2 Re-admissions* 7 persons 21 admissions Total 371 persons 423 admissions *within 3 months of first admission date

This amounts to a re-admission risk of 12.1% within 3 months from the date of first admission. Of the 45 persons with at least one re-admission, 34 were Maltese citizens (30 adults, 4minors), 8 were asylum seekers (7 adults, 1minor), 2 were Eastern European, and 1 was a non-Maltese EU citizen.

The gender ratio was 194 males (52.3%) and 177 (47.7%) females. The gender distribution by age was as indicated below:

Age Total % Male % Female %

<18 years 12 3.2% 5 2.6% 7 4.0%

18-29 years 87 23.5% 53 27.3% 34 19.2%

30-44 years 119 32.1% 64 33.0% 55 31.1%

45-59 years 59 15.9% 32 16.5% 27 15.3%

>60 years 90 24.3% 38 19.6% 52 29.4%

Not available 4 1.1% 2 1.0% 2 1.1%

TOTAL 371 100.1% 194 100.0% 177 100.1% (P-value = 0.136286, not significant)

Nearly 60% of admissions involved persons aged less than 45 years – almost 27% were adolescents and youth aged less than 30 years and 32% were adults aged 30- 45 years, confirming the high burden of mental disorder in younger segments of society. Almost 25% of admissions were persons aged 60 years. From a gender perspective, although not statistically significant, females at the extremes of age (less than 18 years and more than 60 years) and males between 18 and 44 years of age were more heavily represented. The data for youths was analysed separately and the report on “Mental Health in Youths” is at Appendix 2.

10.8% of acute admissions were refuge or asylum seekers – a new vulnerable group for mental disorder that is emerging rapidly within our society. Concerning gender distribution, this table is statistically significant mainly due to the preponderance of males among asylum seekers.

Nationality Total % Male % Female %

Maltese / Gozitan citizens 285 76.8 145 74.7 140 79.1

Asylum Seekers 40 10.8 30 15.5 10 5.6

Other EU citizens resident/visitor 33 8.9 14 7.2 19 10.7

Non-EU residents/visitors 12 3.2 5 2.6 7 4.0

Not available 1 0.3 0 0.0 1 0.6

371 100 194 100 177 100 (P-value = 0.015979, significant at p < .05)

The worrying feature for refuge or asylum seekers with mental disorders is the virtually inexistent social networking to support safe return to the community, apart from the cultural significance of mental disorder in Middle Eastern, North African, East African and West African communities.

The approximate burden of mental disorder based on the primary diagnosis declared on applications for involuntary care by psychiatry specialists shows that schizophrenia was the main reason for admission followed by mood disorders and alcohol and substance abuse. These three disease categories represent more than 80% of the total disease burden.

Disease Category Approximate burden

Schizophrenia, schizotypal and delusional disorders 37.8%

Mood [affective] disorders 27.8%

Disorders due to psychoactive substance use 15.0%

Organic, including symptomatic, mental disorders 7.8%

Neurotic, stress-related and somatoform disorders 7.2%

Behavioural and emotional disorders with onset usually 4.4% occurring in childhood and adolescence

The observed final outcomes for the 423 applications for involuntary admission for observation were:

CLOSED EPISODES (92.9%) Involuntary hospital admission lasting 10days or less 306 72.3% Involuntary hospital admission lasting up to 10 weeks or less 64 15.1% Involuntary hospital admission lasting up to 17 weeks or less 10 2.4% Involuntary detention in hospital lasting more than 17 weeks 5 1.2% Involuntary care in the community 8 1.9% INCOMPLETE EPISODES (7.1%) Involuntary Admission Order on 31st December 2015 9 2.1% Involuntary Treatment Order on 31st December 2015 19 4.5% Extended Treatment Order on 31st December 2015 2 0.5% 423 100%

It is encouraging to note that 72.3% of involuntary admissions were either discharged or continued to receive inpatient hospital care on a voluntary basis and 20.6% required further treatment against their will. 7% of cases had valid admission or treatment orders as at 31st December 2015 and therefore the final outcome of their applications could not be determined.

Another challenge in the first year of implementation was the gradual changeover of patients on long term treatment orders issued under the old Mental Health Act which used to be valid for one or two years and the alignment of the care needs of these patients to the shorter time frames of the new legislation. We commenced the year with 54 persons on long term treatment order as hospital in-patients and we ended the year with 48 persons on long term treatment order, of whom more than half (25 out of 48) were on community treatment orders, a notable and welcome shift towards monitored involuntary care in the community. The changeover was as follows:

Discharged from Treatment Order 15 27.8% Transferred to Continuous Detention Order 18 33.3% Transferred directly to Community Treatment Order 4 7.4% Transferred to Community Treatment Order via EIATO 13 24.1% Old Treatment Orders still valid on 31st December 2015 4 7.4% 54 100%

On 31st December 2015 there were 48 patients on valid long term treatment orders: 23 detained in hospital and 25 on community treatment orders. The source of these patients was as follows:

Source Continuous Detention Order Community Treatment Order Old MHA (Cap 262) 18 17 (13 via EIATO) New MHA (Cap 525) 5 8 23 25

This means that 35 cases on long term treatment orders at the end of 2015 were already on a long term treatment order under the old MHA. Although this represents 73% of the long term treatment order burden, it is encouraging to note that 50% of these patients are being followed up in the community. The new burden of long term care was 13 new cases in 2015 which amounts to 27% of the total long term care burden, 60% of whom are being followed up in the community.

This data represents the first full year of implementation of the new Mental Health Act. Certain trends are emerging. The involuntary care process is being closely monitored. Patients are being followed up within the much shorter timeframes established by the new law. Although not strictly comparable, length of stay in involuntary care has diminished radically. Patients are being discharged from compulsory treatment orders or transferred to community treatment orders rather than being left on “leave of absence” for years on end. Community involuntary care is timidly becoming the preferred option (52.1%) of following up difficult cases, also because it includes as a care option the possibility of short admissions for observation and stabilisation care if the need arises. This shift requires a commitment to further strengthen community support services.

The new applications for involuntary care are progressively being better completed and the quality of the information backing requests is improving. Care plans are being submitted, but the completeness and their quality merits revision. Furthermore evidence of involvement of patients and responsible carers in the care planning process should be better documented if it is indeed happening. In fact care plans and their availability was one of the main items assessed in the Annual Visitation to Licensed Mental Health Facilities for 2015 (see Visitation Report at Appendix 4).

This Office shall be investigating further the level of awareness of patients’ rights in terms of the Act, particularly in the case of those patients who were admitted for observation against their will, but who within 10 days were deemed to be willing to continue to receive inpatient care on a voluntary basis or to be discharged (306 in 2015).

Mental Health Review Committee Following the dissolution of the Mental Health Review Tribunal (MHRT) and the sudden demise of its last Chairperson in October 2014, the eventual hand-over of the pending files was completed in early January 2015. An internal Mental Health Review Committee was set up within the Office for the handling of pending cases and eventual requests for reviews of cases either by the Minister for Justice or by the patients themselves. Five pending applications to the MHRT for release from compulsory care according to the procedure of the old law were referred by the Ministry for health for review. These five cases were settled by mid-February utilizing the procedures of the new MHA – two cases were released from hospital on a Community Treatment Order whilst three cases were kept in hospital on a Continuous Detention Order. It is envisaged that the more frequent obligatory review of treatment orders in the new MHA will reduce review requests of this type to a minimum. In fact, no requests for review were received throughout 2015.

The main function of this Mental Health Review Committee will be to advise the Minister responsible for justice on leave applications on behalf of patients detained under Article 37 of the MHA (known as CCJP patients) and in other situations whenever the Minister for justice feels that the advice of the Commissioner is required to arrive at a decision. There were three such requests in 2015.

Curators In terms of Article 26 of the Mental Health Act, curators are now bound, inter alia, to submit to the Commissioner within three months of their appointment a register of assets belonging to the person lacking mental capacity and submit every six months an income and expenditure account of the said person.

In order to ensure compliance with these obligations the Customer Relations Unit sent reminders to all curators appointed after the coming into force of the Act and assisted the majority of curators in familiarising themselves with their reporting obligations. A ‘hand-holding’ exercise was conducted to ensure that curators understand their obligations and submit the proper and complete documentation to this Office. It is envisaged that this exercise will continue indefinitely.

Interface with mental health service provider entities A total of seven formal meetings were held between staff members from the Office of the Commissioner and the Management Team of the main public service entity the Mental Health Services (MHS) in order to ensure rapid resolution of issues linked to the implementation of the Mental Health Act and to identify the best possible ways to co-ordinate action intended to promote and uphold the right of patients. MHS Management was repeatedly encouraged to implement the main recommendations of the visitation report 2014 namely, to deal with the derelict care environments in certain wards, to reform the patient experience through more structured activities at ward level, to widen the scope and support the growth of community care services, to improve the crisis intervention and outreach services, and to continue to address the disparity of social benefits between patients in similar care environments. Regular and repeated exchanges of information throughout the year focused on the need to review and revise protocols for acute admissions and protocols for transfer of patients to psychiatric rehabilitation services; issues linked to the care of children and adolescents; problems caused by the revolving door policy adopted with substance abusers; the challenges of dealing with persons seeking refuge and asylum particularly in the absence of adequate social support in the community; and the care environments for the three types of forensic patients as required in the new MHA: Article 36 (cases under court observation), Article 37 (cases whose plea of insanity was accepted by the court) and Article 38 (inmates of the correctional facilities who develop mental health problems).

The Office advocated for an SOP to deal with requests by patients to change consultant, for a structured approach to the submission of multidisciplinary care plans involving professional teams and which involve patients and responsible carers, for the rapid resolution of the impasse caused by the lack of enough Mental 26

Welfare Officers, and for stepping up and multiplying efforts for the recruitment of social workers and psychologists. Concerning social workers, the Office invited the Dean of the Faculty of Social Wellbeing in order to explore better collaboration with Mental Health Services and it was decided to increase trainee slots thereby encouraging more social work trainees to enter the mental health social work area. The Office will also work with MHS on methods to improve the employment conditions for social workers in mental health. Ad-hoc joint meetings with MHS Management were held with a number of professional groups within MHS: child and adolescent service teams, psychology services, ward managers and their deputies, the outreach team and representatives of the psychiatrists.

We assisted MHS to find an interim solution in order to overcome the threats to patients’ rights resulting in persons being admitted involuntarily to MCH without a Mental Welfare Officer assessment in those cases where (a) the person had no responsible carer to sign for his/her admission and (b) the admission took place after normal working hours.

The issues of consent to treatment and of the appointment of the responsible carer in minors had to be treated separately. A minor can be deemed by the responsible specialist to have sufficient maturity and understanding to consent or otherwise to treatment. However, in the case of appointment of responsible carer, the parents still have a parental responsibility and therefore the best placed would be the parents or by mutual consent of parents and child - someone else if appropriate. The child cannot refuse. However if there are suspicions of abuse, or other cogent reasons, the responsible specialist can apply to the Commissioner. Regarding issues of a handful of persons on the chronic ward who have no suitable identifiable responsible carer, the responsible specialist would need to write to the Commissioner to appoint a responsible carer for purposes of consent to treatment only.

The issue of finding work for mental health patients was repeatedly discussed with MHS. In a nutshell, one needs to devise a system where (1) patients do not lose their Social Assistance on entering employment; (2) patients who live with their parents at home do not lose their Social Assistance; and (3) patients with disabling mental disorders are entitled to a disability pension. This requires a very delicate 27 balance between employment rights, social inclusion and effective rehabilitation. An inter-ministerial approach is sorely needed to address this longstanding dilemma.

Several staff officers provided regular advice to healthcare professionals on issues in relation to the Mental Health Act on an ad-hoc basis. During the reporting period this Office provided Information Sessions concerning the Mental Health Act for healthcare professionals as well as to other professionals or entities who requested them. Information Sessions were held with B.Sc. Mental Health Nursing Students, APPOGG staff, Valletta Community Centre, Allied Health Professionals within MHS, B’Kara Parish Group and staff at Speech Language Department

Throughout 2015, the Superintendence of Public Health through the Department of Healthcare Standards issued licences for the operation of the Community hostels operated by NGOs in addition to licences for inpatient facilities thereby implementing the recommendation by this Office that PPP programmes funded by Government in the community are provided from adequately licensed premises and facilities. The remaining step in this process will be the licensing of community based services, which involves service delivery protocols and standards rather than the licensing of premises. During 2015, the Superintendence presented a draft proposal reviewing the licence conditions for facilities purporting to provide mental health services. The effort to bring together a set of conditions under which mental health care facilities are licensed is commendable and merits support and encouragement. We particularly support two general concepts in the proposal namely: the stratification of licensing reflecting the scope of the facility and a checklist of policies and procedures that have to be in place. Detailed feedback was provided, emphasising that each facility must meet all the requirements laid out in the MHA and identifying interpretation loopholes due to selective licensing conditions.

Several other activities undertaken by the Office to monitor the implementation of the Act are covered in more detail in the subsequent section on “Influencing Policy”. This section will also describe the policy changes that the Office will be promoting and advocating in order to safeguard the rights of persons with mental disorder using the the legal framework and backing provided by the MHA as approved by Parliament.

Training for patients and carers in patient advocacy The Office developed and started to deliver a Patient Advocacy Pilot Project to inform mental health patients and their carers of their legal rights and responsibilities under the MHA. The objectives were to meet up and inform 100 patients and/or carers of their rights and other changes brought about by the new law, in group sessions over a period of 12 months. The priority was given to younger patients, and those who have been inpatients for not more than 5 years, patients receiving care in the community including Day Centre Clients & services provided by other entities such as Richmond Foundation & Mental Health Association and other NGOs.

The content of the training sessions was then developed into 2 newsletters which were published in order to be used and given out during patient sessions. A questionnaire was prepared to collect data and feedback from participants.

Interface with the Police The working group between Mental Health Services, the Police and this Office which was originally established in 2012 was re-constituted in 2015 following a meeting called by this Office with the Assistant Police Commissioner responsible for Human Resources & Policy Implementation. Collaboration and cooperation between the Police Force and Mental Health Services is critical to ensure that the person with a mental disorder receives the best possible and safest care. A joint protocol has been drafted to provide clear and practical guidelines to Police and Healthcare professionals on their respective roles and responsibilities when working together to respond to the needs of people with a mental disorder. Another round of consultation with the stakeholders ensued, the report was finalised and it is awaiting final endorsement by the main actors namely the Commissioner of Police and Mental Health Services Management.

Media Presence and Participation The Office website has now been transferred on new platform. Following training on the new system, regular updates are carried out in-house according to need. The website was particularly useful in the promotion and dissemination of the results of the Health Literacy Survey and the Mental Health and Well-being Expo, the major events hosted by the Office in 2015. 29

In September the Office Facebook page was launched. The number of “Likes” is increasing slowly and regular updates and posting of information is helping to enhance visibility on Facebook.

“Il-Vuċi” was the result of a joint initiative between the Office and the Malta Drama Centre within the Ministry for Education. This Community Theatre Drama project included the development of the script between students and producer with the help of the Commissioner. The Office assisted in dissemination of the promotional event with Mental Health Services & the NGOs in the field of mental health. Further representations of “Il-Vuċi” were held during Notte Bianca 2015 and during the Mental Health and Well-being Expo.

Presence in newspapers and news portals and on radio and television included:  Interview with the Commissioner for a TV programme hosted by Malta Employers Association (February).  Radio and TV programmes promoting the Health Litearcy Survey results – RTK, PBS, NET-TV, ONE Radio.  World Mental Healthy Day 2015, “Dignity in Mental Health”, write-up on the Malta Independent on Sunday by Natasha Barbara & Gertrude A. Buttigieg (11 October 2015)  Mental Health & Wellbeing Expo held on 10 October – was well reported by all media including Print, TV news, Radio and electronic media. A number of live TV participation requests involving a number of officers were accepted.  Reference to the contents of the Office Annual Report 2014 was made on the Malta Independent, the Times of Malta and iNews.  Bi-monthly phone-in programme on current mental health and well-being issues - RTK

Influencing Legislation

Reform of Justice (Civil Procedure) Legislation In Bill No. 124 of 2015 published on 23 October 2015, the Ministry responsible for Justice proposed a number of amendments in Civil Procedure which reflected also

30 reforms that had been advocated by the Office in relation to interdiction and incapacitation. The Bill included the complete replacement of Article 527 of the Code of Organisation and Civil Procedure and proposed the introduction of electronic registration of interdictions and incapacitations. This finally brought to an end the obligation to notify all notaries through an official letter sent by hand, concurrently bringing significant savings in expenses for patients and their assets. In its formal reaction, the Office supported these proposals and put forward three amendments for consideration:

1) It was proposed to give automatic right of access to the electronic register to the Mental Health Commissioner in addition to Lawyers, Notaries and Legal Procurators, in view of the obligation of the Commissioner to monitor curators;

2) It was noted that there was no mention in the draft of the certificates of Lack of Mental Capacity issued by the Office in terms of Article 24 of the Mental Health Act. It was a perfect occasion to have these certificates also entered into the system of electronic registration. The proposal was that the Register should contain three parts and with Part 3 being Certificates of Lack of Mental Capacity in line with Article 24 (8) of the Mental Health Act which states that "The Commissioner shall notify the Registrar of the Court of Voluntary Jurisdiction of all certificates of lack of mental capacity which have been approved or revoked in terms of the Eleventh and Twelfth Schedules respectively, and the Minister (responsible for health) with the concurrence of the Minister responsible for justice, shall make regulations to establish the procedure for entry and removal of such registrations” . On the advice of the Attorney General, and in the absence of specific Regulations, this Office regularly notifies the Court of Voluntary Jurisdiction of all certificates of lack of mental capacity that it issues.

3) As an Office concerned with the rights of persons with mental disorders, we expressed our disagreement that the list of interdicted and incapacitated persons (including the name and surname of the persons, their father's name, their place of birth, their place of residence, and their ID card numbers) should continue to be published in the Government Gazette on annual basis as happens to date. This legal obligation perpetuates stigma unnecessarily and should be removed. We proposed 31 that whilst the Electronic Register should be always online for those who “need to know” for professional or legal reasons, open public access should be retained through the Registrar of the Court of Voluntary Jurisdiction, but removing the need to publish the list in the Government Gazette in January of each year.

All three amendments were accepted by Parliament and the President approved this Act on 19th January 2016. We look forward to the introduction of the online register in the coming months, thus implementing in full one of the recommendations that this Office had made to the Kummissjoni għal Riforma Ħolistika fil-Qasam tal-Ġustizzja (see page 19 of the Annual Report 2013).

Other Legislation We note that other legislative amendments advocated by this Office in 2013 are still not implemented. The Office recommends once again that action be taken regards:  Concepts of “Insanity” (“Ġenn”) in the Criminal Code - Psychiatric certificates can really only declare that a person has a temporary or permanent “lack of mental capacity” (“nuqqas ta’ kapaċita’ mentali”) and not that a person is/was insane. Lack of mental capacity is time-linked, event-linked and sometimes person-specific. The Office once again recommends that concept of insanity, which is very much ingrained in our criminal code and in case law, needs discussion and revision to better reflect modern thinking.  Disparaging words should be removed from the Criminal Code. One such example is Article 339 (1) (n) which refers to “nies boloh, xjuħ, magħtubin, mifluġin, jew immankati”.  Assisted decision making processes – This is becoming more urgent due to the ever increasing number of old and frail persons who are unable to make appropriate decisions concerning self-care and independent living. This grey- zone is mostly relevant to professionals offering health and social welfare services, particularly in situations where it is considered that the individual would benefit from long term care residential services which the individual is refusing. We recommend once again the introduction of a holistic “Mental Capacity Act” providing a spectrum of protection options: o Different levels of power of attorney (limited, general, lasting)

o Different levels of lack of mental capacity applicable to old, frail persons or persons with altered levels of consciousness due to accidents or other medical reasons, o Assisted decision making in matters such as financial and estate and health and personal care o Living wills o Advanced directives  The concept of the “Office of the Public Guardian” - Following amendments in civil legislation on adult guardianship, Parliament approved in July 2015 that there should be a pool of guardians, consisting of advocates, legal procurators, social workers and other experts, to perform the duties of guardians. This is a step in the right direction towards the establishment of the Office of the Public Guardian, with the recommended subsequent step being that this same pool is extended and widened so that the Court could nominate curators for cases of interdiction and incapacitation from this same pool of “public” guardians. The Office of the Public Guardian would eventually monitor curators and guardians appointed by law, have a team of competent persons who can act as curators and guardians in emergency or deserving situations, and be the repository of interdiction, incapacitation and guardianship orders.

The Vulnerable Voter For the third consecutive year, questions on the capacity of individuals to express voting intentions in the presence of frailty and vulnerability have surfaced very close to Local Council Elections polling days in March/April 2015. It is most unfortunate that this sensitive matter is very quickly forgotten once the electoral frenzy passes.

It is the right of every adult to participate and vote in elections irrespective of age and any health problems they might be experiencing. All measures approved by the Maltese Parliament in recent years to facilitate voting by frail vulnerable citizens should continue to be taken. Polling stations set up in all hospitals and residential homes were hugely successful. In future, this Office would also wish to see the “seemingly revolutionary” introduction of mobile ballot boxes in hospitals, SVPR and

33 retirement homes, thus averting the need to move patients and beds and bringing voting rights to the patient bedside.

In the meantime, the Electoral Commission should seek to prepare clear written guidelines on the procedures to be followed (a) in assessing the fitness of residents to be transferred from their respective ward/bed to the polling area within the institution in order to cast their vote, and (b) in dealing with voters who request assistance or have difficulty to express their voting preference due to dementia or other mental health disorders. Such guidelines ensure equity and fairness throughout the electoral process where vulnerable persons and persons with dementia are concerned.

Notwithstanding all these positive measures, there will still be situations of lack of mental capacity which preclude an individual from the exercise of the right to vote. The circumstances under which this occurs are clearly outlined in Maltese legislation. Citizens and families or carers of vulnerable persons should be informed of their respective rights and responsibilities in order to ensure a fair process that allows the exercise of democracy expressed through voting rights whilst at the same time safeguarding the most vulnerable in society.

The capacity or otherwise of persons to take part in the electoral process should be placed in the context of the electoral cycle and the legal framework which governs it. Article 58 (a) of the Constitution of Malta provides that: “No person shall be qualified to be registered as a voter ... if he(or she) is interdicted or incapacitated for any mental infirmity by a court in Malta or is otherwise determined in Malta to be of unsound mind.” This provision is strengthened by Articles 13, 14, 24 and 27 of the General Elections Act, which outline a practical and definitive solution to the dilemma. These articles provide the specific legal mechanism to be followed for the cancellation of a voter from the Electoral Register.

In other words, concerned family members or carers of persons who are deemed as not capable of expressing their opinion during an electoral process can apply to the Electoral Commission for the cancellation of a voter in order to avoid any

34 unnecessary problems and pressures that normally occur once voting documents start to be issued and distributed.

The cancellation procedure itself ensures that every request for the cancellation of a voter due to lack of mental capacity is examined on an individual case-by-case basis and decided upon according to the specific medical facts that are pertinent to that particular case as elicited by a medical board appointed to review such cases. The decision to strike a person off the Electoral Register has to be unanimously agreed to by all members of the board.

It is fair that vulnerable persons are given all the necessary assistance to be able to express their right to vote. It is equally important however to protect the dignity of those vulnerable persons who may not be able to express their wishes due to mental incapacity at the moment of voting. Relatives or carers are therefore encouraged to act in the appropriate manner if they wish to avoid this unpleasant situation. Once a voting document has been issued very little can be done by the Electoral Commission to revoke voting rights on grounds of lack of mental capacity.

There are no charges related to the cancellation process. The cancellation of the registration of a voter by the Electoral Commission does not affect in any way other rights and privileges that the vulnerable person may be entitled to.

We believe that most frail, elderly and vulnerable persons are in a position to exercise their right to vote. We acknowledge, however, that in certain circumstances, timely action by families or carers is necessary to protect vulnerable persons from the effects of election fever.

Influencing Policy

The Office has made a number of interventions and representations aimed at influencing mental health policy, other national health policies and strategies, and those policies that are in some way related to its mandate which involve other ministries.

Parliamentary Committees on Health and Social Affairs The discussion of the 2014 Annual Report of this Office in the Parliamentary Committees on Health and Social Affairs offered the opportunity to engage in a frank discussion with Members of Parliament on the state of mental health and on the state of patient rights. The discussion lasted around four hours, spread over two sessions held on 28th October and 16th December. The topics discussed included:  the importance of engaging in far reaching deliberations on better legislative tools to deal with mental capacity difficulties in persons not suffering from mental disorders.  mental health is the most important chronic disease in persons aged less than 30 years, hence the emphasis on proper service facilities for children adolescents and young adults.  the linkage of social determinants such as poverty, unemployment, low social status, poor literacy and mental disorders.  mainsteaming mental health will ensure that mental disease receives due attention, like all the other chronic diseases.  the country still lacks community support structures to sustain early discharge and support the invaluable work of informal carers.  crisis intervention services must become part of emergency response services, supporting A&E, extending liaison services and eventually intervening on site at community level if necessary.  acute psychiatry should move to a general hospital environment to enhance rapid investigation, vigourous treatment and promote further the concept of early discharge. (At the request of the Committee, the Commissioner presented to MPs a dossier with extensive documentation from WHO and EU to assist their policy deliberations on this matter.)  the shabby and derelict state of the chronic wards at Mount Carmel Hospital must be addressed, in order to give a dignified living environment to the residents who live permanently there.  the opening of more small hostels in the community in partnership with NGO’s must be supported and funded.  inactivity in wards must be tackled, open spaces and gardens should be utilised better, smoking policies must be revised.

 complaints mechanisms, patient empowerment and the enhanced role of the customer care service.  low uptake of specialised nursing courses to be tackled on the same basis as happened a few years ago with doctors, fostering a research and motivation approach.  improve recruitment and retention of psychologists and social workers.  tackling the harmful effects of certain medications and the unavoidable consequences such as weight gain and Parkinson’s.  possible legislative improvements that make the Commissioner more autonomous.  the importance of training and upgrading of staff skills through knowledge transfer and expertise of foreign lecturers to supplement local efforts.  in line with action taken in other hospitals, Government intends to seek strategic partners to refurbish Mount Carmel Hospital in 2016.  the policy of more management autonomy at service delivery level will be implemented through the appointment of a Board of Directors for Mental Health Services, the legal instrument to action this is already in place.  licensing for mental health facilities should take into account the level of care and complexity that is required to be delivered from the facility.

Mental Health All the Commissioner’s functions are focused on respect and dignity - a people- centred rights-based approach which is at the core of the Mental Health Act. There are 19 rights for patients in the legislative tool, which can all be summarised basically in the underlying right for full respect and dignity. In pursuance of this:  The Office reviewed, monitored and approved or otherwise all applications for involuntary care, treatment or detention under the Act ensuring that personal freedoms are only restricted when justified and for the shortest duration possible. The result of this is that maximum permitted durations of involuntary observation, treatment and detention have been drastically reduced.  The Community Treatment Order (CTO) has started to operate ensuring that patients remain in the community and co-operate with their treatment through the support of an identified key health care professional responsible to ensure

compliance. The CTO has given new scope for the delivery of outreach services. At the end of 2015 there were 25 persons on an active Community Treatment Order. Of these, 7 are already on the first six-month renewal. Under the old Act, it is likely that most of these 25 persons would have remained either in a hospital on Involuntary Treatment or Detention Order. In accordance with the provisons of the Mental Health Act, the Community Treatment Order Register was sumitted for review by the Office in June 2015. It appears that the Register is meeting three of the four required criteria. It is being updated, it provides the necessary elements for supervison and it is an active register. It however fails to indicate the respective level of clinical risk for each patient on a CTO. We shall be taking this up with Management in the early months of 2016.  Development of comunity-based services continued with the existing day centres in Zejtun and Qormi being offered from new improved premises in 2015. Richmond Foundation opened a new 11-bedded residential facility for males in Qormi and through this initiative, 11 patients were transferred from long stay wards in Mount Carmel Hospital into the community. A female facility should be ready for use by mid-2016.  We note with concern that crisis intervention services were effectively non- existent during 2015.

The life-course approach and the protection of the most vulnerable among the vulnerable approach are mainstay in our daily work at the Office. We have throughout 2015 repeatedly addressed concerns regarding children, adolescents and young adults; frail elderly persons with particular reference to dementia; dual diagnosis clients; asylum seekers; and forensic patients.

The Office is committed to provide strategic public health leadership fostering mental health in all policies at both national as well as international levels. Throughout 2015 we have consistently reviewed all national or ministerial legislative drafts, policies, strategies or action plans which were open for consultation, and provided feedback and recommendations in this regard. Strategic leadership is also provided in the

38 form of organisation and participation in conferences and events to engage in meaningful debate, influence policy and practice, and promote mental health.

The Office collaborates, facilitates and networks with several public agencies such as the Commissioner for Children, the Police Authorities, the President’s Foundation for the Wellbeing of Society, the University of Malta and Aġenzija Żgħażagħ among many others and with a number of Mental Health and other NGOs who remain the mainstay for mental health advocacy on the Island.

Substance Abuse After an analysis of the current situation, the Office elaborated a draft proposal for extending care to persons with mental health problems in association with psychoactive substance misuse. The full report is at Appendix 3.

The Office remains concerned with various issues related to the care being provided to persons suffering from co-existent mental health disorder and psychoactive substance abuse, commonly referred to as dual diagnosis patients. This problem impacts on other persons with mental disorder who do not have a co-existent psychoactive substance abuse disorder and is proving to be a considerable challenge for the management of mental health services. There are patients with substance abuse problems who require acute mental health care as in-patients within a hospital environment.

Alongside this acute care requirement, three categories of persons requiring 3 separate types of “rehabilitation care” have been identified: (1) a sober living home environment for persons who successfully complied with an established treatment programme but who require further sheltered living to effectively make a full transition into a drug-free life; (2) a remedial programme for frequent relapsers or non-compliant persons (remedial classes); and (3) a drop-in shelter aimed at reducing homelessness and criminal activity in that subset of persons who lack the ability and/or support to effectively transition to a drug-free life.

Due to lack of time and resources, the Office could not take this matter forward in 2015. This is a complex issue with multiple stakeholders involved. It is disrupting the

39 work processes with the Mental Health Services. It requires a concerted approach involving mainly Mental Health Services, FSWS, Sedqa, Caritas and OASI.

Child and Adolecent Mental Health Services (CAMHS) This year saw the opening of the new Young People’s Residence and the increased input of a new consultant psychiatrist specialised in child and adolescent mental health. We maintain that acute paediatric and adolescent mental health services should from part of mainstream acute general hospital services. In support of this we provide in Appendix 2 of this report our analysis of acute involuntary care in youth in order to raise awareness of the actual size of the problem in the local context.

We recommend that in the interest of continuity of care and in line with international epidemiological data, the artificial age-limit for CAMHS based on reaching the legal age of “majority” at 18 years is revised immediately to 25 years. Transition to adult services should happen between the ages of 25 years and 30 years depending on the specific nature of each individual case. This ensures that youngsters do not experience the trauma of having to change their caring team in the most critical years of the acute disease process, which is currently causing devastating effects.

The current situation is leading to lack of coordination and lack of continuity in care services offered to children, adolescents and young adults with mental health difficulties by the different providers within health, education and welfare. At age 18 years, most youngsters are finding themselves at the end of the waiting list for adult services. This needs to be addressed with urgency. This should be done by bringing together into a single, flexible, focused and holistic service the psychiatric, care, psychosocial, educational and welfare needs of children, adolescents and youths with mental health difficulties.

Acute hospital admission for acute psychiatric conditions in youth should be reformed. The aim should be avoidance of mental disorder reaching the chronic stages of the disease process. Acute admission of youths and persons aged less than 30 years of age should be into two separate and distinct service entities:  The acute phase lasting a few days (ideally not more than 10 days) should happen within an acute general hospital setting as with all other acute medical 40

or surgical conditions such as appendicitis, heart attack, stroke etc. Within this short timeframe, acute care requirements should ideally be handled, the situation controlled and stabilised and the person is prepared either for early discharge or else to switch to voluntary care, whilst recognising that some difficult cases will need to move on to active rehabilitation.  The active rehabilitation phase lasting up to 15 weeks should be directed towards the more severe cases requiring longer involuntary care. The caring environment would need to go beyond psychiatric therapeutic care and provide integrated psychosocial, educational and motivational approaches aimed at building and strengthening life-skills, supporting families and other social networks as necessary and providing respite and shelter when crises so require.

The above requires financial and human resources – substantial capital investment to provide safe and secure care premises is probably the easiest challenge to overcome provided the funds are made available. Re-focusing and re-engineering of current services can free up a number of professionals to be redeployed into these challenging programmes. However more specialised training programmes are necessary to provide the additional skills and expertise for a meaningful response to this important aspect of mental health care.

Youth Policy We have provided public health advocacy to Aġenzija Żagħżagħ and actively supported the development of its Youth Policy, Strategy and Action Plan 2015-2020 which was launched in August 2015. The Action Plan envisages health and wellbeing as one of the important cross sectoral pillars offering support to youth in Malta. The action plan purports to develop and implement initiatives that seek to improve the physical, mental and emotional health and well-being of young people and address issues that impact negatively on such well-being. The planned actions for cross-sectoral cooperation in health and well-being include: • Healthy lifestyles, including healthy eating and physical exercise for young people, will be encouraged and promoted. • Young people with disabilities will be supported to participate fully in youth work activities. 41

• Young people’s mental health and emotional well-being will be promoted. • Young people’s sexual health and responsible and caring behaviour in sexual relationships will be promoted. • Substance/alcohol abuse and addictive behaviours, such as compulsive gambling, among young people will be tackled. • Young people will be helped to confront bullying (including cyber bullying) and other anti-social behaviours.

Investigation of complaints

Allegations of breach of human rights In 2015 this Office received and processed fifteen (15) cases of alleged breaches of the rights of persons suffering from a mental disorder or of their carers. These included, inter alia, complaints and/or allegations of

 unlawful detention in mental institutions,  abusive behaviour and treatment (by formal and informal carers), and  harassment.

In each case, the Office listens to the complainant or reviews the complaint or allegation and undertakes any necessary investigation as appropriate. In cases where there appears to be a prima facie solution to the complaint, this Office communicates its recommendations for said solution to the entity concerned and follows up with the complainant to ensure a satisfactory outcome.

Cases of a sensitive nature, particularly those of a legal or civil nature, are first discussed internally at senior level and then followed by meetings with the individuals concerned and / or their relatives, where they are offered advice as to how to proceed to seek assistance depending on the nature of the case under review. All other cases were invariably referred to the management of the entities concerned for their views and comments prior to a decision being taken internally on the way forward.

There were no cases which needed reporting any healthcare professional for breach of human rights.

Customer Relations Unit The Customer Relations unit receives an average of 10 requests per week for assistance/information. The majority of requests do not, strictly speaking, fall within the remit of the Commissioner as set out in the Mental Health Act (Cap 525). However, given that they relate (albeit somewhat tenuously in some cases) to persons suffering from mental health issues, the unit strives to assist by providing advice, information and by suggesting alternative avenues for assistance.

The unit also provides advice to healthcare professionals within the Mental Health Service in dealing with particular cases and situations. Such requests are invariably communications with some cases requiring face to face meetings.

It is once again stressed that customer care units at service delivery entity level must be strengthened in order to respond more effectively and appropriately to client requests and complaints. Referral to this Office should be the last resort and for serious cases where the index of suspicion of breach of human rights is considerably high. Extensive organisational revision of customer care units in public health care services needs to be undertaken in view of the introduction in October 2015 of the Charter of Patient Rights and Responsibilities as provided by the Health Act.

Visits and Audits

Visitation Report 2015 The Office has carried out its Second Annual Inspection of all mental health facilities in the summer of 2015. The aims of the visits in 2015 were to (1) ensure that patients are being taken care of in a dignified manner by dedicated staff in a suitable environment; (2) explore whether service users are aware of their rights, participate in their care process and assess their care experience; and (3) assess the manner and extent of the organisation of medical records and their content, especially documentation required by the Mental Health Act. During this inspection the team

43 evaluated the level of adherence to these rights by providers, assessed the physical environment, the quality of care, and the available documentation such as consent forms, the appointment of responsible carer forms and the availability of multidisciplinary careplans, and appraised the patients’ experience. It also heard the concerns of the staff. The report with the findings and recommendations will be forwarded to the Ministry and the relevant management for their information and consideration.

Using Mater Dei Hospital (MDH) facilities as the gold standard for safety and from the environmental aspect, we found safety is still an issue on some wards at both Mount Carmel Hospital (MCH) and Gozo General Hospital (GGH). Investment in safety measures is sorely needed especially in the MCH-Male Dual Diagnosis Unit (drug abusers), MCH-Female Forensic Unit (prisoners) and MCH-Male Ward 8B (asylum seekers/drug abusers). The physical environment is in dire need of improvement in the MCH-Male Forensic Unit (prisoners), followed by MCH-Mixed Admission Ward (all acute admissions), MCH-Male Ward 8B (asylum seekers/drug abusers) and MCH-Female Medical Ward 2 (psychogeriatric).

One issue that needs to be tackled immediately is the relocation of the smoking area on MCH-Male Ward 1, as the fact that it also doubles up as a lounge and television room exposing non-smokers to continual second-hand smoke is unacceptable. Concerning staff behaviour and motivation, staff at MDH and staff in community residential facilities seem to be more professional and interact better with the patients than staff in the other care facilities. This also holds for the general hygiene and upkeep of the patient. When interpreting these observations, one has to keep in mind that the patients in residential facilities are more autonomous in that they can

44 take better care of their personal hygiene and appearance and also more receptive to instructions offered by staff.

Patients are still far from being empowered. In fact less than a quarter claimed that their rights had been explained to them, which shows that this is not common practice. The underlying reason could be that staff do not feel strongly that patients should be told about their rights and on the other hand patients are not aware about their rights. Although nearly two thirds (65%) of repondents feel they have participated in their care as much as they wished, it is difficult to assess to what extent they actually participated. Patients tend to be reluctant to submit reports on threats from staff or other patients, showing that they fear retribution. Patients seem to accept the status quo and do not question anything. This legacy of the past needs to be addressed.

Although basic medical care is being provided, this is not being complemented by other interventions and activities which help the patient maintain or regain any lost skills. The level of activity on the wards especially during the weekend is extremely low. In fact, patients suggested an array of activities that they would like to have whilst in hospital. At MCH, activities during the day usually involve attending occupational therapy sessions at the activity centre but no such activities occur on the wards. During our visits, we were informed that the number of patients attending such sessions is dwindling, due to lack of human resources. Occupational therapy is an integral part of treatment as it provides an opportunity for the patient to retain or reattain his/her skills to facilitate the transition from being an in-patient to living in the community.

Privacy is not always being respected and seems to be very low on the priority list of staff. There is no established policy on the use of mobile phones which may make communication with relatives and friends difficult, thereby increasing risk of isolation.

Good documentation in files is conducive to patient safety and quality of care. The fact that the diagnosis of a patient was not easily retrievable on the file is unacceptable. This is a basic requirement to ensure safe care, especially if this is needed outside office hours when the caring team of the patient is not present. Also, 45 the absence in most files of a documented multidisciplinary care plan must surely affect the quality of care provided. The presence of informed consent to treatment forms in all files at MDH, in 73% of files at MCH and in 90% of the community residencies is encouraging. GGH and SVPR wards are severely lagging behind in this respect.

The most shocking finding was that only one (1) particular file contained all the requirements of the MHA; namely completed forms for consent giving and for the appointment of a responsible carer and a multidisciplinary care plan. Moreover, it remains to be seen whether the information given to the patient is of the right content and in the right language for the patient to fully understand it before consenting to treatment. The appointment of a responsible carer and its documentation in the file is still greately lacking in all care facilities.

During this year’s visit the team felt that some improvements have been made since the 2014 visit, although the extent cannot be measured tangibly. The patients seem to be better kept and some improvement in the overall physical environment has been noted. Staff seems to be more receptive to the needs of the patient and more collaborative. Medicines are stored in a better way and documentation has improved. The wards are somewhat cleaner. However, a lot still needs to be improved for the objective of dignified care in a safe and suitable environment to be reached. Staff dedication, respect and dignity towards patients in wards cannot be expected to make up for lack of investment in the physical environment of care facilities.

A cause for concern is that there is discrimination between the patients themselves, in that care is very dependent on which ward or in which facility one happens to be. This is not right. Standardisation of care is important to ensure that each patient is receiving optimal care in a decent environment, hastening recovery and a rapid return to a more independent, productive life within the community.

Although change is gradually being brought about more investment needs to be made in the continued professional education of all healthcare professionals so that they offer the best possible care to the patient and will be more sensitive to their needs. Certain requirements by law which can be easily implemented such as 46 consent taking and the appointment of a responsible carer, are still not being done ubiquitously as shown by the lack of documentation in the medical records. Also, patient and responsible carer empowerment needs to be strengthened through more information dissemination so that they are more aware of their rights and of seeking forms of redress.

The Mental Health Act (MHA) offers an excellent framework for patient-centred quality care, thus every effort must be made by all the stakeholders to ensure that the provisions are adhered to so as to provide excellent care in a dignified way to ensure a positive patient care experience and expedite their return to an independent life in the community.

In relation to these findings, we have repeatedly asked MHS management to look at and take measures to rectify the following aspects during the latter months of 2015:  Consent forms have been developed and are being used throughout the mental health service. However there is a degree of variability in completeness of forms and the process of eliciting informed consent, with some consultant firms being less fully committed to the process than others.  Appointment of responsible carer forms have also been developed and are being widely used throughout the mental health services. Once again there is a degree of variability in completeness and in the process of appointment of such responsible carers.  The MHA encourages persons with mental disorder and their carers to take a central role in the management of their own care plan. Multidisciplinary care plans are being submitted by caring teams to justify involuntary treatment and detention. Care plans are an important tool to assess progress and to ensure continuity of care. However the Office remarks that there is evident and easily visible variability in completeness, comprehensiveness, ownership and implementation of these care plans among the various caring teams. This is an area where further work is needed to ensure that patient rights are safeguarded.

The full report of the visits is at Appendix 4.

Incident Reporting Through our monitoring of incident reports, the Office has assisted Mental Health Services to establish a regular review system aimed at addressing patient safety and quality issues. Article 6 (g) of the Mental Health Act tasks the Commissioner for Mental Health to review all incident reports received from licensed mental health facilities. The Office of the Commissioner in collaboration with the Mental Health Services worked to increase the number and quality of reporting. The reporting culture varies among the different professionals and also between the different wards, thus influencing the amount and type of reporting. In this summary, we rely on the content of the reports received. However, overall the reporting templates were completed satisfactorily.

The full report is at Appendix 5.

There were fifty six (56) incidents involving sixty (60) patient episodes. A total of forty one (41) individual patients were involved in incidents with nine (9) patients featuring in more than one (1) incident. The results need to be interpreted with caution since the numbers are small. Three (3) of these patients contributed to a total of sixteen (16) incidents between them, overinflating the representation of the 15-24 year age group and the DSM-10 classification of ‘Behavioural & emotional disorders with onset usually occurring in childhood & adolescence (F90-F98). ‘

There seems to be seasonality in the occurrence of incidents in that half of the incidents occurred in the fourth quartile of the year. The ward with the greatest number of incidents was Female Ward 1 (FW1). Most patients involved in incidents have an involuntary status. An overwhelming 93% of incidents reported fell within the Patient Protection Events (PPE) category. One has to question, whether there is selective reporting by staff and whether this is related to fear of possible repercussions if reports reflecting shortcomings by members of staff are submitted. Most of the reported incidents occur between noon and four o’clock in the afternoon - is this because patients tend to be idle during this time or could it be that supervision is lax at this time? Since the number of incidents on each ward is very small, it was difficult to see if there was a specific time in any one ward when incidents tended to 48 occur. Reporting is still mostly the remit of nurses and the reporting system is probably missing the contribution of other healthcare professionals.

Working in Partnerships

The Office of the Commissioner is constantly seeking ways of building networks and working in partnership with key stakeholders from various sectors whether public, private, church or social, in order to facilitate synergistic action and identify ways for mutual collaboration. This is done through requesting and accepting requests for meetings, fostering a culture of joint groups focused on multidisciplinary action, actively participating in conferences, seminars, workshops and other events, and working together on specific actions.

Meetings The following meetings were held at the request of the Office of the Commissioner:  Meeting with the Jesuit Refugee Service to explore mutual collaboration in providing mental health support to asylum seekers (22nd January 2015).  Meeting with Caritas to explore meaningful ways of improving drug abuse services in Malta (10th April 2015)  Meeting with Agenzija Zghazagh (5th October 2015).

The following meetings were held at the request or invitation of other entities:  The Mental Health Act for Drama students – Malta Drama Centre (20th April 2015).  Meeting with the ADHD Support Group, seeking endorsement of their request for the introduction of improved medications for ADHD sufferers (23rd April 2015).  Meeting with the Multidisciplinary Team of the Young People’s Residence at Mount Carmel Hospital (29th May 2015).  Meeting with Director Health Care Standards on licencing of mental health facilities (10th June 2015).  Meeting with President and Secretary of the Malta Association of Psychiatry (26th June 2015).

 Visit by Mr Martin Seychell, Deputy Director General of DG SANCO at European Commission (6th July 2015).  Meeting with the Nursing Managers of the Mental Health Services (9th July 2015).  Visit by Dr Niall McCrae, lecturer in mental health nursing at King's College London (10th July 2015).  Meeting with Basic and Higher Specialist Trainees in Psychiatry (13th July 2015).  Meeting with all the staff of the Department of Psychology, Mental Health Services (15th July 2015).  Meeting with Foundation for Shelter and Support to Migrants (FSM) on the future management of the Marsa Open Centre (7th August 2015)  Joint Social Affairs and Health Committee – Parlament ta’ Malta, Valletta (28th October 2015 and 16th December 2015) – to discuss the Annual Report 2014 of the Office of the Commissioner for Mental Health.  Meeting with Outreach Team regarding CTO monitoring, Mental Health Services (3rd November 2015).  Meeting with Joe Calleja, CEO Richmond Wellbeing, Perth, Australia (16th November 2015).  Meeting with SVPR Management on the care of older persons with dementia (20th November 2015).

Working together on Specific Actions

Health Literacy Health literacy encompasses a wide spectrum of skills and abilities including but not limited to communication, listening, analysis, comprehension, speaking and decision- making skills. Health literacy is a critical investment if we want to move towards health equity and patient centred health care. The impact of limited health literacy disproportionately affects lower socio-economic and minority groups within society. It affects people’s ability to search for and use health information, adopt healthy behaviours and act on important public health alerts. The Office of the Commissioner has recognised the increasing importance being given on a European and

International level to the phenomenon of health literacy and its impact on the wellbeing of society as a whole. A growing body of research and evidence mainly resulting from the European Health Literacy Project (HLS – EU) has spurred the attention to this subject and affirmed that health literacy is a means by which to combat poverty and social exclusion, reduce inequalities and ensure that everybody can benefit from growth. It is also an important factor in meeting the challenge of promoting a life-long healthy and active population and tackling the demographic challenges that lie ahead.

The HLS-EU study in 2011 was conducted by the HLS-EU Consortium including Maastricht University as lead partner and eight associated partners from Austria, Bulgaria, Germany, Greece, Ireland, the Netherlands, Poland and Spain. The final results of this survey revealed that almost one in two persons in Europe (mean 47%) has risk of limited health literacy, that literacy levels vary between countries and that in vulnerable people the risk of limited health literacy is higher than 60% compared to that of 47% for the general population. The most vulnerable sub groups across Europe were the elderly, people with low levels of education, people with low socio- economic status and people with self-assessed levels of bad health.

In this regard, the Office in partnership with the National Statistics Authority embarked on a research project to measure the level of health literacy in Malta and explore ways on how health literacy can be further advanced in the future. The Malta Health Literacy Survey 2014 adopted the same tools developed for the HLS – EU. The objectives of this research were to:  Obtain a snapshot of the level of health literacy of the Maltese population and the percentage of persons with limited health literacy or at risk of limited health literacy  Identify any vulnerable groups within the population who are more at risk of low/limited health literacy  Assess health behaviours and health outcomes of the population in relation to the level of health literacy  Assess health service use in relation to health literacy The project was concluded in March 2015. Following its conclusions the results of the findings were collated in a publication. From the findings of the survey, it was

51 concluded that national results compare quite well with the findings of the European Health Literacy Survey (EU HLS) carried out in eight Member States with a mean European General Health Literacy Index of 33.8 as against 34.0 for Malta.

More detailed analysis showed that 54.2% of the Maltese adult population has a ‘sufficient’ or ‘excellent’ level of health literacy whilst 45.8% have a ‘problematic’ or ‘inadequate’ level of health literacy. Persons with a tertiary level of education were found to be more health literate than all the other educational attainment subgroups of the population. Individuals who considered their health to be ‘very good’ had better health literacy than the rest of the population. In addition, those persons who found no problems in paying for medication if necessary or who could afford to pay for doctor visits, tended to have better health literacy levels.

This study defined the very vulnerable or vulnerable within the local context to be those perceiving their health as bad; persons with more than one long term illness; those attributing to themselves a very low social status; residents of Gozo and persons aged 76 years and over.

Survey participants expressed difficulty or did not know how to find information on common mental health problems (45%), how to use media information to protect themselves from illness (38%) and how to judge the credibility of health information from the media (35%). On the other hand it was overwhelmingly easy for participants to understand and follow professional instructions (94%) and instructions on medicines (92%), understand health warnings (92%) and health screenings (88%), and judge behaviour related to health (87%). These responses confirm the success of past efforts within our health system but also indicate that further action is required in mental health and in citizen empowerment on health decisions and choices based on reliable information from the media and from personal encounters with trained professionals.

52 mix of health services. They are more likely to be admitted to hospital through accident and emergency services. Also, such individuals are more likely to present to their GP’s at a much later stage of illness and therefore have delayed diagnosis with increased morbidity. Besides impacting at individual level, these actions have an economic impact as well.

The findings from this survey strongly support the mission of this Office to advocate for better mental health in Maltese society. Health literacy gaps need to be identified and addressed at the patient-professional interface because health literacy is the duty of each professional and the right of every citizen. The results of this study should mark the beginning of a new process whereby the concept and measurement of health literacy becomes integrated in policy making and daily professional practice. This will ensure that public health advice is accessed, understood, appraised and applied by the individual and by the health system .

The results of this study were collated in a publication which can be downloaded online http://health.gov.mt/en/CommMentalHealth/Documents/health-literacy/health- literacy-survey-malta-2014.pdf. The publication was launched during an event on 11 June 2015. For this event, representative experts from public health, academia, education, finance, health services and other entities were invited. During the launching event, 3 focus groups were formed and each of them discussed an area related to health literacy: organizational health literacy, health literacy and public health and mental health literacy. Following an intensive discussion, each focus group came up with a number of recommendations on which the Office will be working in the future in its pursuit to influence policy development especially within the area of mental health (see also Appendix 6).

Mental Health and Wellbeing Expo On the 10th of October of every year, together with the international community we celebrate World Mental Health Day. This annual event puts the spotlight on a particular aspect of mental health and brings it to the forefront for public discussion. In 2015 the Office decided to work towards organising a Mental Health and Well- being Expo to celebrate World Mental Health Day. The venue chosen for this Expo was The Point Shopping Mall, Tigne Point, Sliema. This site was chosen as a site 53 visited by many people from all over Malta during the weekend. It was decided that given the stigma surrounding the subject of mental health, a proactive approach needed to be adopted so as to promote positive mental health and wellbeing within the community.

The Office brought together a very strong response from 30 different NGO’s, voluntary organisations and service providers working in the hospital, residential and community sectors of mental health to promote their services. The objectives of this Expo included raising awareness, representing positive attitudes, increasing preventing behaviours, celebrating achievements and recovery, networking, connecting and growing.

A number of stands were set up around the mall area distributing information, leaflets and other material related to mental health awareness. The Malta Drama Centre within the Ministry of Education also gave a number of performances of their community theatre production “Il-Vuci” at the lower level of the mall.

This event was attended by several political figures including her Excellency, the President of Malta who launched a discussion platform for NGO’s working on mental health during this event. With this event, the Expo managed to reach all its stated aims, achieved considerable media coverage and visibility, continued to raise awareness and emanate a positive attitude towards better mental health and wellbeing, distributed information on prevention, and most importantly created connections and networks between various participating organisations. From structured feedback gathered from participants after the event, there was consensus that this was a learning and growth experience for all involved and there were very strong recommendations that further similar initiatives should be organised in the coming years.

Working with the Ministry responsible for Health

Country Cooperation Strategy with WHO Europe During the stakeholder consultation meeting on the first draft of the proposed Country Cooperation Strategy between WHO Europe and Malta for the years 2016- 54

2021 organised by the Ministry in June 2015, the Office was instrumental in ensuring that the issue of mental health is tackled with vigour in the coming years. In the revised version in August 2015, it was stated that in the case of Mental Health, Malta will enhance a whole of government and whole of society approach as part of a new strategic direction to address this national issue. The key policy drivers were identified as being mainstreaming mental health within all service provision particularly acute service provision and improving social determinants particularly education and employment. Since mental ill health occurs at any age, it needs to be addressed throughout the life-course. More emphasis will be placed on the issue of mental health and migration (vulnerable populations) and dementia as well as mental health issues in persons suffering from other NCDs such as Cancer, Diabetes and Alcohol addiction.

The Ministry identified the following elements for collaboration with WHO Europe: - Development of an updated Mental Health Strategy and Action Plan - Development of public mental health services with emphasis on community supported living, early detection and intervention, and integration of crisis response services - In the case of Alcohol, there is a clear need for a national policy or action plan on Alcohol to be developed followed by regulations to address the issue

The Office was invited to form part of the Ministry task force focusing on the detailed definition of an updated Mental Health Strategy and Action Plan within the framework of the National Health Systems Strategy. This work commences in January 2016.

Organ and Tissue Donation The Office provided detailed feedback on the Ministry white paper regarding this matter which is reproduced at Appendix 7.

In the interest of people with mental health issues in particular, but also as regards the whole population in general, the Office favours a hybrid option. We believe that a mixture of the various systems is safer and respects better the will of every individual.

First of all we believe that a Hard Opt-In and Opt-Out position for those who positively manifest their intention should be in place. This ensures that both if persons positively express their intention either to be a potential donor or to exclude this possibility in the future, those wishes should be supreme and no-one should be able to overturn such decisions.

For the rest of the population who neither express themselves in favour nor against being potential donors, then their relatives / carers / guardians should be in a position to decide whether they consent to their relative's removal of organs.

Since a strictly Opt-Out system is based on the mental capacity of an individual to Opt-out from such a system, this Office is very much concerned that persons with mental health problems would be disadvantaged in expressing their will, given that no one besides a specialist in mental health can declare that a person lacks mental capacity.

Selection Boards One senior staff member was actively involved in completing the selection process for the positions of Professional Lead Allied Health Practitioner and the posts of Higher Specialist Trainees in Public Health Medicine.

Membership on EU Presidency Teams Two staff members are assisting the Ministry through their active participation in two different Presidency Teams within the context of Malta’s EU Presidency between January and June 2017 – the WHO Team and the Public Health Team. The WHO Team will need to assist in the Programme Budget Administrative Committee (PBAC) and the World Health Assembly.

Other Health Policies and Strategies The Office provided responses from a mental health and public health advocacy perspective on a number of health policies and strategies.

A common feature in most local policy discussions is the lack of appreciation of the mental health aspects of acute and chronic diseases. Through the intervention and 56 active involvement of the Commissioner and several professionals within the Office, we are trying to fill this important gap in mental health advocacy. We note the efforts made to offer psychological support and stress management initiatives to the victims of the Paqpaqli incident, but we would like this service to be widened to other acute care situations which are a common daily occurrence in our emergency rooms.

This Office continues to emphasise the importance of recognising and dealing with the mental health burden of chronic disease and also the poor outcomes of chronic disease in persons with mental health problems. This Office will continue to uphold the age-old concept of the Romans of – mens sana in corpore sano – which has been translated by WHO into – no health without mental health.

During 2016 the Office will continue to uphold these principles and look further into new areas such as  mental health and the workplace;  mental health in cancer patients and their families; and  obstetric and perinatal care and the mental health of mothers and children.

Participation in Conferences, Seminars, Workshops & other Events

The Commissioner and senior members of the staff delivered presentations and participated in a number of conferences, seminars, workshops and other events both locally and internationally. These events are excellent opportunities for networking and disseminating the messages linked to the mandate of the Office.

Participation in Local Events Members of the staff delivered presentations during the following conferences:  An Audit of Incident Reports in a Mental Health Facility – MAPHM CPD Lecture (16 April)  Mental Health In Malta – keynote presentation in the Richmond's Mental Health Seminar with Alistair Campbell – “Why the time to change attitudes to mental illness is now” – President’s Palace, Valletta (19 June).

 The Public Health Challenges of Ageing – Science in the City, Valletta (25 September)  ‘Enablement through Rehabiliation’ – Conference organised by Malta Physical and Rehabilitiation Medicine Association (30 October)  CMTU Forum - HEALTH – Primary health the backbone for a sustainable health care system, Rabat, Malta (18 November).  IX Malta Medical School Conference, Hilton Hotel, St. Julians’ (3-5 December) o Oral Presentation: “Mental Health in Youth o Oral Presentation: “Involuntary care and the new Mental Health Act” o Oral Presentation: “Mental health literacy: what we don’t know, we fear!” o Discussed Poster: “Are patients with mental disorders getting the right deal?” o Discussed Poster: “Incident reporting in a mental health facility- an exercise in futility?” o Discussed Poster: “Who are the frequent attenders at the A&E Department, Mater Dei Hospital?”

The events, seminars and conferences organised by various Government entities, NGOs and other organisations in which staff participated included:  Malta World Cancer Day Conference – ‘Not beyond us’ organised by Action for Breast Cancer Foundation, Health Promotion and Disease Prevention Directorate and Department of Physiology and Biochemistry of the University of Malta - Verdala Palace, Buskett. (4 February).  Speech Language Therapy day organised by the Association of Speech Language Pathologists Malta at Mater Dei Hospital (6 March).  Family Forum of the President’s Foundation for the Wellbeing of Society – “The personal wellbeing of the family medicine specialist” – San Anton Palace, Attard (8 April).  Official Launch of “ID-DRITT” Vol XXV – which contains a review article on the Mental Health Act written by the Commissioner – The President’s Palace, Valletta (4 May).  Talk by Mr Alastair Campbell "Why the time to change attitudes towards

mental illness is now" at the Palace Valletta organised by Richmond Foundation (19 June).  First Anniversary of PFWS – San Anton Palace, Attard (25 June).  Graduation Ceremony Caritas, San Blas, Haz-Zebbug (26 June).  Information session on funding (Thematic Objective: Promote Health, Prevent Diseases and Fostering Supportive Environments for Health Lifestyle taking into account the “Health in all policies” principle), organised by the Directorate of Health Programme Implementation at MDH (6 July)  Book Launch by St Jeanne Antide Foundation and Mental Health Association – San Anton Palace, Attard (15 July).  Information session on funding programmes (Horizon 2020, COST and FUSION: The R&I programme), organised by the Directorate of Health Programme Implementation at MDH (28 July)  Launch of the National Youth Policy – Towards 2020: A Shared Vision for the Future of the Young People in Malta (11 August).  Lecture on Attention Deficit Hyperactivity Syndrome, delivered by Dr Nicholas Myatt, Consultant in Child and Adolescent Psychiatry, UK, organised by ADHD Malta, at the University of Malta (8 October).  Richmond Foundation: Mental Health First Aid Launch (9 October).  St Vincent de Paule LTC Conference – “Collaboration for a Seamless Service – Towards a Holistic Approach to Long Term Care”, Qawra (9 October).  President’s Foundation for the Wellbeing of Society – “The Determinants of Wellbeing: Insights from Research and Implications for Malta” - Verdala Palace, Buskett (20 October).  Exploring Anxiety: An educational, psychological and psychiatric perspective - Conference organised by Richmond Foundation, Dolmen Hotel, Qawra (22 October)  President’s Foundation for Wellbeing of Society – National Conference on Bullying - Verdala Palace, Buskett (23 October).  President’s Foundation for the Wellbeing of Society – “Problematic Internet Use in Malta Amongst Young People Aged Between 18-30 Years - A Quantitative Study” Verdala Palace, Buskett (28 October).  MHA Gozo Conference - "Iz-Zghozija - Ir-realta` attwali" – Marsalforn, Gozo

(30 October).  Briefing Session on EU Presidency 2017 and the Presidency Teams, organised by Dr A Calleja, Director International Health Affairs, at MDH, organised for senior health officials (30 October).  Medicine and Law Seminar - ‘Futile Treatment and Palliative Care at the End of Life’ organised by the Bioethics Research Programme of the Faculty of Medicine & Surgery in collaboration with the Medicine and Lay Programme of the Faculty of Laws (2 November).  Commissioner for Children Conference – “Be smart online!” Le Meridien Hotel, St. Julians’ (12 or 13 November).  MEA Focus Group - Policies and practices related to disabilities in the workplace, St Julians’ (23 November).  CHOGM Satellite Seminar - Social Determinants of Health – Keynote speaker: Sir Michael Marmot - MDH Central Auditorium, organised as part of the CHOGM activities by MAM (24 November).  Ministry for Social Dialogue, Consumer Affairs and Civil Liberties - Human Rights Seminar on the setting up of the Human Rights and Equality Commission and the enactment of an Equality Act (10 December).

Participation in Overseas Conferences

International conferences offer an opportunity to share experiences, views and strategies concerning persons with mental problems and to assist professionals within the Office to keep abreast with innovations and developments at EU and international level. During 2015 the Commissioner and other members of the staff participated in overseas conferences viz.:

PaSQ 5th Coordination Meeting - Brussels, Belgium - 12-13 March 2015 The aim of this conference was to give an account of the organisation, workings and outcomes of the Joint Action on Patient Safety and Quality of Care which had been ongoing over a three year period. This topic is highly relevant today, with the exorbitant expenditure within the health care sector and to ensure a sustainable service. The economic burden of preventable adverse events costs the EU health

60 systems around €15.1 billion per annum. The Joint Action was made up of seven working groups, with each group having determined responsibilities. To provide guidance to this Joint Action, basic data was analysed, following which an action plan for a particular initiative and a feasibility analysis were performed. Once transferability of the initiative was ascertained, the practice was exchanged between different healthcare systems. This modus operandi was a sterling example of collaborative working. Continuous monitoring and feedback of hospital practices would definitely bring about a leap in quality of care and increase patient safety. The sharing of knowledge and transfer of successful practices from one health system to another health system lead to the introduction of already evidence-based practices to new health systems. This cuts down on time, resources and costs.

Mental Health in All Policies (MiHAP) - Supporting sustainability and growth in Europe – Helsinki, Finland – 11-12 May 2015 The conference organised by the Finnish Ministry of Health and the Finnish Mental Health Association disseminated evidence and good policy practices based on the outcomes of activities under the EU Health Programme, including projects and the Joint Action on Mental health and Well-being. The thematic focus of the conference was the importance of intersectoral work to promote population mental health over the life span, providing good practices of collaboration across sectors from Europe. The conference brought together experts and decision makers and other relevant stakeholders across government sectors on national, regional and local levels, and included a strong representation of relevant NGOs. During the confernce an EU reference document updating the MiHAP approach was launched. It calls for health systems to reach out towards individual, familial and societal determinants of mental health which lie in the non-health policy domains such as social policy, taxation, education, employment and community design. The very foundations of mental health are laid down early in life and are later supported by positive nurturing, high social capital, a good work life and a sense of meaning. Many of these factors can be enhanced through the MHiAP approach in non-health sectors and, therefore, remain important targets for mental health promotion and mental disorder prevention interventions. Examples of effective interventions to promote population mental health include interventions in local communities, parenting support and home visiting programmes as well as school based programmes. 61

9th European Patients’ Rights Day – Brussels, Belgium – 12 May 2015 The event organised by the Active Citizens’ Network focused on “The challenges of chronic disease and patients’ rights in the framework of EU healthcare sustainability”. It included a long line-up of speakers including the Italian MEP hosting event, Martin Seychell from DG Sante, representatives from patient organisations and patients themselves, and researchers in health and health economics. Patients need to be at the heart of changes and developments in healthcare. Patients do not belong to the caring consultant. A multidisciplinary team approach to disease management is the best and most economic way to treat patients. Issues of patient safety, addressing patient needs holistically, patient profiling, patient information and priorities should be considered and the focus should health not disease.

EU Commission Seminars in the Health Programme – Brussels, Belgium – 2 June 2015 The purpose of this seminar was for the EU Commission to launch and discuss the findings of two EU Health Programme Projects.

1. Sound evidence for a better understanding of health literacy in the European Union (HEALIT4EU) Health literacy is slowly gaining increased attention in the EU. Most EU countries are however still in the first phases of agenda setting. At present no statements can be made on cost-effectiveness or even effectiveness of measures. The best interventions for addressing health literacy should be tailored to the needs of the target population as this has been shown to give the best results. Interactive skills should preferentially be targeted. There should be more attention on development and evaluation of interventions, agreement on valid measurement tools, and the generation of evidence based policy and exchange of best practices between member states. Health Literacy can be considered a useful complement to more general health promotion and health education policies. Malta was congratulated by the researchers for being the first MS to conduct a national population-wide measurement of Health Literacy after the termination of the HLS-EU project which was conducted in 8 EU countries between 2009 and 2012. This seminar provided 62 us with an opportunity to contextualise the national Health Literacy Survey conducted by our Office and promote it on a Europe-wide level. Our next step and challenge will need to be that of raising Health Literacy higher on Malta’s national agenda and developing a declared policy and action plan in this respect.

2. Effective Use of European Structural and Investment Funds (ESIF) for health investments in the programming period 2014-2020. This project focused on building knowledge and capacity in the Health Ministries of Member States in preparation of the programming period 2014 – 2020 of ESIF and promoting effective implementation of ESIF actions in the health sector. This project has produced some valuable tools and guidelines (mapping report, a guide for effective ESIF investments in health, and a managerial and technical toolkit). All outputs are now available on a website (http://www.esifforhealth.eu/Index.htm). These tools and guidelines are predominantly designed for representatives of Ministries of Health, Managing Authorities of ESIF co-funded operation programmes and other entities active in the field of health. The seminar also referred to the European Fund for Strategic Investment (EFSI) which is a new funding mechanism which was eventually launched in the summer of 2015.

HOPE Agora: The Future of Hospitals and Health Care - Warsaw, Poland – 6-8 June 2015 The annual HOPE Agora conference serves as a platform for the sharing of experiences undertaken by healthcare professionals from one healthcare system who spend some time working in another health setting, with a view of influencing positively pracitices in their area of work. European hospitals seem to be experiencing similar challenges such as an ageing population, increased demand for healthcare and financial restraints. Methods to mitigate these effects were discussed. These included:  the introduction of innovative practices which increase output without compromising quality,  patient empowerment with improved patient participation in one’s own care,  integrated care and improved streamlining between primary and secondary care and

 a shift from hospital to community care, bringing services nearer to the user. Widespread consultation with all stakeholders, especially with service users is important when devising services, policies and even building of hospitals as user perspective, being different from that of the policy maker, would allow for a more comprehensive picture of the needs of the clients. Sharing of information and practices between health systems is key to improving the quality of services provided and improving the patient experience and outcomes.

Universal Health: Investing in Health and Wellbeing for all – Riga, Latvia – 29- 30 June 2015 The conference held within the Latvian Presidency of the EU called for an action plan to create sustainable, equitable and participatory European health systems that improve patient outcomes. The pillars of such an action plan are: universally accessible health systems to prevent health inequalities; investment in innovation to make health systems sustainable; high quality services that are person-centred and meaningful participation by users in decision making processes. The Riga Roadmap indicated that the role of governments should be not only to control healthcare costs, but also to regard health as a vital investment that ensures a healthy population and promotes social cohesion and inclusion across Europe. The European Union institutions and national governments of the Member States must address the social, economic and environmental determinants of health in order to reduce poverty, social exclusion and resulting health inequalities and improve patient outcomes.

Cross-border health care: is it working for Patients across the EU? – Brussels, Belgium – 2 July 2016 The aim of the conference organised by the European Patients’ Forum was to bring together representatives of National Contact Points, patient leaders, policy makers and various stakeholders to take stock of the implementation of the Cross-Border Healthcare Directive. Despite the fact that the directive has legally been transposed in all EU countries, in practice the directive is not working uniformly. There are discrepancies from country to country on the benefits, degrees of reimbursement, payment options and authorisation. It was also highlighted that the benefits of the European Reference Networks for rare diseases, ehealth principles and health technology assessment are still far from functioning and desired. The conference 64 concluded that there is room for more patient centred implementation processes rather than procedures which accommodate the health systems.

Workshop on (Implementation of) Patient Rights in the European Union – Mapping Exercise (PRE-MAX) – Maastricht University, Brussels Campus - 10- 11 September 2015 Led by the INTHEALTH group at Maastricht University and the WHO European Observatory on Health Policies and Systems, this workshop was based on a discussion paper which considered the preliminary of a mapping exercise carried out across the EU in order to overview the various legal frameworks as well as other policy tools and mechanisms in place (or in the making) to define, implement and enforce patient rights. The discussion was framed round a series of presentations, on patient rights law, enforcement systems, Council of Europe activities and the role of the EU. The Commissioner was one of 34 experts invited to discuss and give their feedback on the topic. The expert group included SANCO representatives, European academics from several countries as well as representatives from a number of NGOs including AIM, CPME, EPF, HOPE, EPSU, ETUC and EHFF.

EUFAMI Congress - Sofia, Bulgaria - 19-20 September 2015 The theme of the EUFAMI 6th major European Congress was 'When East meet West' with an emphasis on 'Families at the heart of Europe'. Amongst the salient points raised during this meeting, the following issues were highlighted:  Problems associated with stigma and discrimination - Delegates called for the reduction of STIGMA affecting mental illness, which represents a heavy burden for families, reduces access to services and hinders integration into society, work, housing and opportunities to form relationships. They also called for measures to fight discrimination due to a relative’s condition such as early education in schools and continuous interventions to combat stigma. Stigma and discrimination associated to mental and physical health problems must be combated in all settings. Enforcement of existing anti-discriminatory legislation is one key element. The removal of stigma and discrimination will pave the way for the development of good mental health services across Europe and benefit families and all of society.

 Resources must be made available to enable family carers to carry out their role effectively. This may involve costs of training, counselling or other emotional help, providing information and financial assistance (for respite breaks, and travel costs to visit their relatives).  Statutory service providers and legislators must be proactive in providing evidence–based family intervention services.  The development of Comprehensive Community based services is seen as both essential and desirable if recovery is to be a realistic possibility. However, it is imperative that mental health care services provide the services outlined above to family members so that they can carry out frontline care, which is essential for more effective community care. The sharing of information on the wellbeing of the person affected by mental ill health is essential.

EUPHA 8th European Public Health Conference - Milan - 14-17 October 2015 The central themes of the European Public Health Conference 2015 were climate change and conflict and mass migration. Coming a few months after the launch of the Susitainable Development Goals by the United Nations and barely two months before the Paris Summit on climate change, this European forum voiced the serious concerns of the public health community that political leaders are paying far too little attention to the grave threats to health posed by climate change. A failure to act now risks catastrophic harm to human health, through environmental degradation, crop failure and famine, loss of water supplies, forced migration and even war over scarce resources. The refugee crisis facing Europe has shaken European institutions to their core. Countries whose people were tearing down the fences that divided Europe are rebuilding them. Some politicians refer to the tide of refugees as an invasion, threatening social, political, and religious identity. In other communities, ordinary people are reaching out to these refugees, offering them food, shelter, and above all hope. Only a few governments have shown solidarity with both the refugees and those countries who have been in the front line of this massive movement of people. The European public health community called upon political leaders to act decisively to address the public health challenges, including damage to mental health, trauma, access to essential health care, gender based violence and other challenges that arise from the massive movement of refugees and displaced

66 persons, in a way that is equitable, humane, and consistent with deep seated European values.

3rd European health Literacy Conference - Brussels, Belgium - 17-19 November 2015 This Conference was organised by Health Literacy Europe, the IROHLA Consortium and the University Medical Centre Groningen (UMCG). The theme for the conference was the development of health literacy during the life course. The conference programme was interactive with key note speeches, scientific research presentations, teach-in sessions, panel discussions, a poster exhibition as well as time for networking. Researchers presented their newest results, whilst practitioners and policy makers shared evidence-based actions, practices and policies in the area of health literacy and discussed health literacy as an instrument to tackle inequities in health across Europe. The conference presented a range of speakers from various backgrounds discussing health literacy from different perspectives: medical and health sciences, psychology, social sciences, and communication sciences. Policy makers and opinion leaders debated the importance of integrating health literacy into societal systems.

During this Conference, Ms Natasha Barbara, Assistant Director responsible for Research, Policy Review and Investigation and Head of Administration at the Office, delivered two presentations, one sharing the findings of the Health Literacy Survey Malta 2014 and the other highlighting the recommendations identified by three focus groups that were set up during the launch event of the survey findings held in Malta in June 2015 (see Appendix 6).

Attendance of HOPE meetings for Liaison Officers – 11 March, 6 June and 2 December 2015 This Office continued to contribute to Malta’s perspective within the European Hospital and Healthcare Federation (HOPE) by providing the liaison officer within the Maltese delegation for HOPE. HOPE seeks to promote improvements in the health of citizens of the European Union by promoting high standards of hospital care through the fostering of efficiency, effectiveness and caring attitudes in organisations

67 responsible for the operations of hospitals and of the health systems within which they function.

As part of its activities for 2015, HOPE delineated its position on the Directive on the application of patients’ rights to cross-border healthcare and the Directive on public procurement and purchasing in the healthcare sector. Other EU issues on the agenda were late payments, medical devices and in-vitro diagnostic medical devices, data protection, counterfeit medicines, patient safety and standardisation in healthcare. HOPE continued to focus on comparative activities which in 2015 centred on hospitals of the future (study tour), emergency care, average length of stay in maternity care, and European projects to share practices. Work on the human resources included the European workforce for health initiative, the working time directive and the furthering of the European social dialogue.

Chapter 3: Professional Development

The Office is committed to the professional development of all staff and to their contribution to the professional development of others. This it achieves by encouraging the uptake by staff of continuous professional development activities and their regular involvement in academic and professional development of others. This helps staff to improve their skills and expertise to implement the mandate of the Office and deliver a quality service.

Continuous Professional Development Throughout the reporting period, a number of training initiatives were taken up by various staff members. These include:  Advanced Empowerment for a Health Workplace , organised by Richmond Foundation (15 hours over 4 sessions between January-February)  CDRT Training: Funding Programmes in the EU (28 January / 18 February).  CDRT Training - Data Protection (6 February)  The DICES Risk Assessment and Management System in Mental Health by Mr Charles Azzopardi at the Institute of Family Therapy, Paola (24-25 February)  CDRT Training – Managing with Leadership (9,13, 26 March)  Public Speaking: Connecting People, a 20-hour course, organised by the Malta University Holding Company Limited, and delivered by Dr Joseph Agius (11, 18, 25 March, 1, 7, 15, 20, 29 April)  Training on Erasmus+ (16,17,18 March) + submission of assignment, follow-up reading and 2 webinars with project closure conference (16 October ) offered by Malta Business Bureau  Generating Ideas for New Projects (17 March)  Training on Innovation and Creativity (24 March)  CDRT Training – Taħriġ tal-Malti (1, 2, 8, 9 April)  CDRT Training – Presidency of the EU Council Malta 2017 (16 April)  Speech writing and Speech making Course (27, 28 & 30 April)  Infection Control Conference, Qawra (5th May).  Optimising Care for Older Persons, Ghajn Tuffieha (8th May).  How the WHO works, by Dr Ray Busuttil, within the MAPHM CPD Programme (11 May)

 CDRT Training – Interpersonal Skills (28, 29 May)  Workplace Health and Wellbeing, a 14-hour course, organised by the Occupational Health and Safety Authority, and delivered by Ms Stelmart Khalil & Dr Mark Rosso (16, 19, 24, & 26 June)  ePortfolio training for Consultants and Resident Specialists – PMTC, Mater Dei Hospital (23 June/10 July).  CDRT Training: Managing change in the Public Administration (23 & 25 June)  Seminar on the Council of the EU (24 June)  Strategic Change Management (6 & 20 July)  CDRT Training on the Public Administration Act & Freedom of Information Act (9 July / 17 July )  CDRT Training - HR Management (14,21 July / 24 November).  Public Speaking seminar by Mr Vincent Stevenson, Founder of the London College of Public Speaking - Lija University Residence (25 July )  CDRT Training – Treasury Management and Accounting Principles(3 August)  CDRT Training - National Procurement Procedures (4 August)  CDRT Training – Budgeting for Managers in line with Malta’s Fiscal Framework (26 August)  Towards team Management Effectiveness (15, 17, 22, 24 & 28 September)  PH Lecture - "Public Health in a Disunited Kingdom" - Dr David Williams (30 September).  Trainees in Difficulty, prepared by Dr Jo Jones, Associate Postgraduate Dean, UK, and delivered by Dr David Williams - Training Centre, MCH (30 September)  ADHD Lecture by Dr. Nicholas Myttas, Consultant in Child & Adolescent Psychiatry (U.K) (8 October).  It Takes two to talk - Hanen Course for SLP’s (12-14 October).  Medical Management (26 October).  MEH Health EU Presidency 2017 Briefing (30 October).  PaSQIT lecture and debriefing by Dr Peter Lachman, Mater Dei Hospital (13 November).  Public Administration HR Management (26 November).  Government Policies - The Making and Evaluation Process (30 November).

 Cancer Survivorship, delivered by Dr Liliana Cuschieri, BST Public Health Medicine, within the MAPHM CPD Programme (7 December).  MAPHM Annual General Meeting, at MCH Training Centre (15 December).

Involvement in Academic and Professional Development of Others During the year under review, members of staff from the Office of the Commissioner were involved in academic and professional development of others as follows:  Delivery of lectures and coordinating assessment of trainees taking module PHL5126 - Organisation of Health Care Systems and Management (5 credits) of MSc in Public Health Course organised by the Faculty of Medicine and Surgery of the University of Malta.  Delivering lectures on Pharmacoepidemiology and Health Status of the Elderly in other modules of the MSc in Public Health Course.  Educational supervision of two foundation doctors.  3 Practical tutorial sessions to postgraduate public health medicine trainees on Poverty (3 July 2014), on Health Literacy (21 May and 16 July).  Seminar on the Mental Health Act to HOPE Exchange participants from Spain, Sweden and Denmark (26 May).  With the assistance of the PMTC, started the development of the postgraduate Public Health Training eportfolio (31 July)  Academic co-supervisor to an MSc postgraduate student (public health trainee) for a thesis entitled: Factors that influence help-seeking for mental health problems among adolescents. The trainee successfully completed and attained her MSc (Public Health) in September 2015.  Seminar to Department of Geriatrics – “Ageing: public health perspectives and future challenges” (24 October).  Lecture on Mental Health Law – Faculty of Laws, University of Malta (16 December).  2 Members on the Executive Committee of the Malta Association of Public Health Medicine.  3 Members of the Public Health Postgraduate Training committee representing the Malta Association of Public Health Medicine (2 members) and the University of Malta (1 member).

 Lectured and examined undergraduate Medical Students following the Public Health module of the M.D. Course of the University of Malta on the political aspects of care and the role of the clinician in management.  Lectured B.Sc. Community Nursing students on Community Care of the Elderly.  Lectured B.Sc. Psychiatric Nursing students on the Mental Health Act.  Assistance of a number of postgraduate (PhD, MPhil, MSc) trainees in various disciplines (pharmacy, public health, psychology, economics) as part of their thesis or research (piloting, validation, participation).  Public health experience in mental health advocacy to three prospective public health trainees during their taster weeks in Public Health Medicine  Assistance to a PhD postgraduate nursing student who is undertaking a PhD with the Department of History on the historical developments in mental health and mental health services.  Training Supervision to two Public Health Postgraduate Trainees.

2015 in pictures

Health Literacy Report Launch Event (11 June 2015)

Mental Health and Well-being Expo (10 October 2015)

Appendices

APPENDIX 1

Functions of the Commissioner (Article 6 (1) of the Mental Health Act – Cap. 525)

The Commissioner shall: (a) promote and safeguard the rights of persons suffering from a mental disorder and their carers; (b) review any policies and make such recommendations to any competent authority to safeguard or to enhance the rights of such persons and to facilitate their social inclusion and wellbeing; (c) review, grant and extend any Order issued in terms of this Act and for this purpose it shall be the duty of any person to appear before the Commissioner when so requested; (d) ensure that patients are not held in the licensed facility for longer than is necessary; (e) monitor any person duly certified as lacking mental capacity and is under curatorship or tutorship; (f) authorise or prohibit special treatments, clinical trials or other medical or scientific research on persons under the provisions of this Act; (g) review all patient incident reports and death records received from licensed mental health facilities; (h) ensure that guidelines and protocols for minimising restrictive care are established; (i) investigate any complaint alleging breach of patient’s rights and take any subsequent action or make recommendations which may be required to protect the welfare of that person; (j) investigate any complaint about any aspect of care and treatment provided by a licensed facility or a healthcare professional and take any decisions or make any recommendations that are required; (i) investigate any complaint alleging breach of patient’s rights and take any subsequent action or make recommendations which may be required to protect the welfare of that person;

(j) investigate any complaint about any aspect of care and treatment provided by a licensed facility or a healthcare professional and take any decisions or make any recommendations that are required; (k) conduct regular inspections, at least annually, of all licensed facilities to ascertain that the rights of patients and all the provisions of this Act are being upheld. During such visits he shall have unrestricted access to all parts of the licensed facility and patient medical records as well as the right to interview any patient in such facility in private; (l) report any case amounting to a breach of human rights within a licensed facility to the appropriate competent authority recommending the rectification of such a breach and take any other proportional action he deems appropriate; (m) report to the appropriate competent authority any healthcare professional for breach of human rights or for contravening any provision of this Act and this without prejudice to any other proportional action that he may deem necessary to take; (n) present to the Minister an annual report of his activity which shall be placed on the Table of the House of Representatives by the Minister and shall be discussed in the Permanent Committee for Social Affairs within two months of receipt; and (o) any other function which the Minister may prescribe by regulations under this Act.

APPENDIX 2

REPORT

“Mental Health in Youths”

3rd February 2016

Mental Health in Youths - SUMMARY

 Between 1st January 2015 and 31st December 2015, 28% of all acute involuntary psychiatric admissions (117 out of 426 total admissions) involved youths aged up to 30 years  95 different persons required acute involuntary admission for observation – this represents 95 different and unique social realities from which these persons are coming  There is a 21% risk of re-admission within 3 months of first admission  The overall gender distribution was 61% males to 39% females  Young asylum seekers living in both closed and open centres are of concern  Youths from Fgura, Naxxar, Balzan/Attard/Lija/Iklin, and Gozo merit closer attention  Schizophrenia is the main disease category, followed by mood disorders and personality disorders  27% of acute admissions for observation required at least one additional period of involuntary care lasting up to a further ten (10) weeks of involuntary care  Re-admission was a highly significant predictor of longer involuntary acute care needs  Develop a holistic seamless service bringing together the psychiatric, care, psychosocial, educational and welfare needs of children, adolescents and youths up to 30 years  Acute care of youths suffering from acute psychiatric conditions needs to be divided into two phases: the acute phase and the active rehabilitation phase  Substantial investment in infrastructure, human resources and training is required  There are many more youth at risk within our communities – they need true empowerment and effective and timely support

INTRODUCTION

Mental disorder is the major public health challenge in adolescents and young adults. The National Alliance on Mental Illness, the largest mental health advocacy NGO in the United States, says that 1 in 5 teens and young adults live with a mental health condition. Half of all lifetime cases of diagnosable mental illness begin by age 141 and three-quarters of lifetime mental illness arise by mid-twenties. However, 60–70% of children and adolescents who experience clinically significant mental health problems have not been offered evidence-based interventions at the earliest opportunity for maximal lifetime benefits.2 Unlike other health problems such as cancers and heart disease, most mental illness begins early and may persist over a lifetime, causing disability when those affected would normally be at their most productive.3 These statements justify a stronger focus on the mental health of persons aged less than 30 years.

METHODOLOGY This analysis concerns persons aged less than 30 years of age with acute mental disorder who were admitted involuntarily for observation to Mount Carmel Hospital or to the Short Stay Psychiatric Ward at Gozo General Hospital between 1st January 2015 and 31st December 2015.

1 Kessler RC, Amminger GP, Aguilar-Gaxiola S, et al (2007) Age of onset of mental disorders: a review of recent literature. Current Opinion in Psychiatry, 20, 359– 364. 2 Meltzer H, Gatward R, Corbin T, et al (2003) Persistence, Onset, Risk Factors and Outcomes of Childhood Mental Disorders. Office for National Statistics & TSO (The Stationery Office). 3 Royal College of Psychiatrists (2010) No health without public mental health – the case for action (RCP Position Statement PS4/2010). London, Royal College of Psychiatrists 84

It is based on notifications of Involuntary Admission for Observation received at the Office of the Commissioner for Mental Health in accordance with the requirements of Schedule 2 of the Mental Health Act. A person may only be admitted involuntarily to a psychiatric inpatient facility if a specialist in psychiatry certifies that such person (a) has a severe mental disorder, and (b) due to the mental disorder, there is a serious risk of physical harm to that person or to other persons, and (c) failure to admit or detain that person is likely to lead to a serious deterioration in his/her condition or will prevent the administration of appropriate treatment that cannot be given in the community.

Involuntary Admission for Observation has a maximum duration of ten (10) days. During this period, acute treatment and care is administered with the scope of control and stabilisation of the acute psychiatric condition aiming for early discharge or switching to voluntary care, thus avoiding prolonged involuntary treatment.

FINDINGS

During the period under study, the Office received a total of 426 valid notifications of Involuntary Admission for Observation. There were 117 notifications (28% of all acute admissions) pertaining to 95 persons aged 30 years or less. The admission patterns for these 95 persons were

Type No. of Persons No. of Admissions 1 Admission 75 persons 75admissions 1 Admission + 1 Re-admission* 18 persons 36 admissions 1 Admission + 2 Re-admissions* 2 persons 6 admissions Total 95 persons 117 admissions *defined as re-admission within 3 months from first date of admission

Of these 95 youths admitted to acute involuntary care, 20 persons required re-admission within 3 months from the date of their first admission. This amounts to a re-admission risk of 21% within 3 months first admission. Of these 20 persons with at least one re-admission, 11 were Maltese citizens, 6 were asylum seekers, 2 were Eastern European non-EU citizens and 1 was a non-Maltese EU citizen.

The gender and age distribution of the 95 adolescents and youths admitted to acute involuntary psychiatric care was as follows:

Age Group Male Female Total Rate/1000 pop Less than 13 years 2 0 2 n.a. 13-17 years 3 7 10 0.430 (10/23256) 18-20 years 10 9 19 1.177 (19/16147) 21-25 years 18 9 27 0.877 (27/30786) 26-30 years 25 12 37 1.199 (37/30864) Total 58 37 95

The overall gender distribution was 61% males to 39% females. It is interesting to note that whilst below age 20 years there are no gender differences, the classic ratio in psychiatric acute care of 2 males to 1 female is established beyond age 20 years. The overall age distribution was: 12.6% were less than 18 years of age, 20.0% were aged 18 to 20 years, 28.4% were aged 21 to 25 years and 38.9% were aged 26 to 30 years. Whilst overall age-stratified rates are not remarkably different from

18 years of age onwards, the admission rates by age group and sex demonstrate definite gender bias with acute involuntary care being 2.5 times more prevalent among females below 18 years and 2.0 times more prevalent among males between 21-30 years, as follows

Age Group Male Female Total 13-17 years 0.252 (3/11905) 0.617 (7/11351) 1 Male = 2.5 Female 18-20 years 1.185 (10/8441) 1.168 (9/7706) Male = Female 21-25 years 1.132 (18/15898) 0.605 (9/14888) 2 Male = 1 Female 26-30 years 1.544 (25/16190) 0.818 (12/14674) 2 Male = 1 Female Total 1.068 (56/52434) 0.761 (37/48619) 3 Male = 2 Female *The two male cases aged less than 13 years were not included in this analysis

The geographical distribution according to the address stated on the 93 admission notifications of youths aged 13-30 years was as follows:

Residence Persons Percentage Address in Malta 44 47.3% Address in Gozo 6 6.5% Care Home residents (Maltese/Gozitan) 5 5.4% Corradino Correctional Facility (all foreigners) 5 5.4% Africa or Middle East (seeking refuge or asylum) 19 20.4% Other EU or EEA (non-Maltese) 11 11.8% Eastern European 3 3.2% Total 93 100%

The Maltese population represented 59.2% of admissions. African or Middle Eastern persons seeking refuge or asylum amounted to 20.4% of admissions. Nearly 12% came from other EU or EEA countries (7 resident and 4 tourists).

A more detailed regional analysis was performed where denominator data was available and the ensuing analysis gave the following picture:

Residence Persons Rates/1000 population 13-30 years Address in Malta 44 0.535 (46/86036) Southern Harbour 10 0.575 (10/17384) Northern Harbour 11 0.429 (11/25625) South Eastern 5 0.338 (5/14814) Western 8 0.577 (8/13872) Northern 10 0.697 (10/14341) Address in Gozo 6 0.810 (6/7404) Care Home residents 5 Corradino Correctional Facility 5 Africa or Middle East (seeking refuge or asylum) 19 North Africa/Middle East 5 East Africa 8 West Africa 6 Other EU or EEA (non-Maltese) 11 Eastern European 3

There were regional differences with residents of Gozo and the Northern region being more at risk, with residents from the South Eastern region being the least at risk. The crude data shows that those residing in Fgura (4), B’Kara (5), Naxxar (4), Balzan/Attard/Lija/Iklin (6), and Gozo (6) were over- represented. Other areas of concern are persons seeking refuge or asylum (19), and residents in care homes (5) and in the CCF (5).

The approximate burden of the various disease categories among those requiring involuntary admission for observation (based on the primary diagnosis declared on the notifications by psychiatric specialists) was as follows:

Disease Category Approximate burden Organic mental disorders 1.1% Mental and behavioural disorders due to psychoactive substance use 7.5% Schizophrenia, schizotypal and delusional disorders 42.6% Mood [affective] disorders 23.4% Neurotic, stress-related and somatoform disorders 1.1% Disorders of personality and behaviour 2.1% Intellectual disability 10.6% Disorders of psychological development 1.1% Behavioural and emotional disorders with onset usually occurring in 10.6% childhood and adolescence

There is a notable difference in the distribution of burden by gender with schizophrenia more common among young males and mood disorders more frequent among women. It is important to note that whilst substance abuse is normally linked to young people, it only starts to become a serious mental health issue after 25 years of age.

Disease Category Male Female Organic mental disorders 1.8% nil Mental and behavioural disorders due to psychoactive substance use 8.8% 5.4% Schizophrenia, schizotypal and delusional disorders 50.9% 29.7% Mood [affective] disorders 15.8% 35.1% Neurotic, stress-related and somatoform disorders 1.8% nil Disorders of adult personality and behaviour 1.8% 2.7% Intellectual disability 8.8% 13.5% Disorders of psychological development 1.8% nil Behavioural and emotional disorders with onset usually occurring in 8.8% 13.5% childhood and adolescence

IMMEDIATE FOLLOW UP

From among these 95 persons, there were 26 youths (27%) who required at least one additional period of involuntary care lasting up to a further ten (10) weeks. For each of these 26 youths, a treatment order for involuntary care as inpatients (Schedule 3 of the Mental Health Act) was approved by the Office of the Commissioner for Mental Health after due scrutiny. The relative

87 applications and multidisciplinary care plans proposed by the caring teams are subjected to independent specialist review to confirm that the requirements of the Mental Health Act are being adhered to. It is pertinent to remark that 11 of the 20 persons with at least one re-admission (highly significant: p=0.001812, p < .01) needed further acute care in accordance with Schedule 3 of the Act.

Number of Proceeded to longer Switched to voluntary / admissions involuntary care (IATO) Discharged Single Admission 75 15 60 More than one admission 20 11 9 95 26 69 *The chi-square statistic is 9.7304. The p-value is .001812. This result is significant at p < .01

CONCLUSION AND RECOMMENDATIONS

The above study focuses only on the most severe form of mental disorder in youth in Malta. The evidence from the United States and the UK shows that the youth at risk within our families, schools, clubs and communities are many more. Most adolescents and young adults can live full lives with a mental health condition. We need a concerted effort to empower our youth to recognise, accept and request help as early as possible. We need support mechanisms that can deal with requests for help expediently and efficiently. Better mental health for our youth is an investment in the future of our society. It is therefore recommended that:

1. The current lack of coordination and lack of continuity in care services offered to children, adolescents and young adults with mental health difficulties by the different providers within health, education and welfare needs to be addressed with urgency. This should be done by bringing together into a single, flexible, focused and holistic service the psychiatric, care, psychosocial, educational and welfare needs of children, adolescents and youths with mental health difficulties.

2. Acute hospital admission for acute psychiatric conditions in youth should be reformed. Mental disorder should not be allowed to reach the chronic stages of the disease process. Acute admission of youths and persons aged less than 30 years of age should be into two separate phases:

 An acute phase lasting a few days (ideally not more than 10 days) within which the acute care requirements can be handled, the situation controlled and stabilised and the person is prepared either for early discharge or else to switch to voluntary care. This should happen within an acute general hospital setting as with all other acute medical or surgical conditions such as appendicitis, heart attack, stroke etc.

 An active rehabilitation phase lasting up to 15 weeks within which the more severe cases requiring longer involuntary care can continue to be treated. The caring environment would need to go beyond psychiatric therapeutic care and provide integrated psychosocial, educational and motivational approaches aimed at building and strengthening life-skills, supporting families and other social networks as necessary and providing respite and shelter when required.

3. All of the above requires resources - financial and human:

 Massive capital investment is needed to provide safe and secure premises from which such care can be delivered. This is probably the easiest challenge to overcome provided the funds are made available.

 Re-focusing and re-engineering of current services can free up a number of professionals to be redeployed into these challenging programmes. However more specialised training programmes are necessary to provide the necessary additional skills and expertise.

JM CACHIA Commissioner for Mental Health 3rd February 2016

APPENDIX 3

Proposal for extending care to persons with mental health problems in association with psychoactive substance misuse

22nd May 2015

Proposal for extending care to persons with mental health problems in association with psychoactive substance misuse

Rationale

Psychoactive substances and substance misuse

WHO defines psychoactive substances as “substances that, when taken in or administered into one’s system, affect mental processes, e.g. cognition or affect”4. Some psychoactive substances may be medically indicated and prescribed in the treatment of a number of psychiatric conditions. However since psychoactive substances induce pleasant or rewarding changes in consciousness and mood they also have a very high potential for being procured illicitly and for being misused.

Psychoactive substances may include alcohol, opioids, cannabinoids, sedatives or hypnotics, cocaine, other stimulants including caffeine, hallucinogens, tobacco and volatile solvents.

Psychoactive substance use may result in a wide variety of clinically recognisable mental and behavioural disorders classifiable under the International Classification of Diseases and Related Health Problems (ICD 10)5 such as acute intoxication, harmful use, dependence syndrome, withdrawal states with or without delirium, psychotic disorders (hallucinations, perceptual disorders, paranoid or persecutory delusions, excitement or stupor, and changes in affect which may vary from intense fear to ecstasy), and amnesic syndromes, amongst others.

Dual diagnosis

Psychoactive substance use disorders often co-exist with an independent primary mental disorder in the same person. This condition is often referred to as a dual diagnosis. It is believed that these disorders share common risk factors such as: (a) overlapping genetic vulnerabilities, (b) overlapping environmental triggers, (c) involvement of similar brain regions, and (d) developmental disorders. Research suggests that (a) persons with an independent primary mental disorder may attempt to alleviate their symptoms through self-medication leading to substance abuse, and (b) psychoactive substance abuse may bring out symptoms of a co-existing mental disorder.6

Diagnosis and Treatment

Because of the intrinsic link between the two disorders, a comprehensive diagnostic and therapeutic approach needs to be taken which may overlap between different services, entities and ministries. Research suggests that persons with co-occurring disorders are at higher risk for suicide, psychiatric

4 http://www.who.int/substance_abuse/terminology/psychoactive_substances/en/ (accessed 12th May 2015) 5 http://apps.who.int/classifications/icd10/browse/2015/en#/F10-F19 (accessed 12th May 2015) 6 National Institute on Drug Abuse. Facts: Comorbidity: Addiction and Other Mental Disorders http://www.drugabuse.gov/publications/drugfacts/comorbidity-addiction-other-mental-disorders (accessed 15th May 2015) 92 hospitalisation, legal difficulties, imprisonment, homelessness, unemployment, domestic violence, abuse or neglect of their children, and other interpersonal problems.7

Estimates of Problem Drug Use8

In 2012, estimates indicated a figure of 1778 daily opiate users (95% confidence interval 1670 to 1911), with an estimated 581 (95% confidence interval 473 to 714) not attending any treatment entity. This implies that approximately 67% of daily opiate users attended treatment services in 2012.

There were 1874 persons with problem drug use receiving treatment in 2012. 82% were male and 44% were aged between 25 and 34 years. During this year there were 266 persons who started using treatment services for the first time, representing a rise of 3% over clients seeking treatment services for the first time in the previous year (there had been 203 new clients in 2011).

Treatment of Drug users refers to both medical and non-medical interventions which are provided locally (see below). Methadone, which is distributed through the Substance Misuse Out-Patient Unit (SMOPU), under the auspices of SEDQA, is still the most commonly prescribed form of medically assisted treatment for drug users in Malta. Of a total of 1135 individuals making use of SMOPU services in 2012, 1094 persons (96%) received substitution treatment.

Admissions to MCH

As at end 2014, after 10 weeks of entry into force of the MHA we have estimated that alcohol or substance abuse was implicated in 25% of all involuntary admissions.9 The most recent published statistics with which we could compare our estimate were from the Mount Carmel Hospital Annual Report for 201110 which states that 34% of all admissions were diagnosed as “mental and behavioural disorders to psychoactive substance use”, of which 7% (out of the 34%) were due to alcohol. Our estimate is based on a very short period of time, relates solely to reported involuntary admissions, and the diagnosis was derived indirectly from the medical information supplied in the application.

Hence at this point in time we can cautiously estimate that from one-fourth to one-third of all admissions to the psychiatric hospital are directly or indirectly associated with psychoactive substance use. This is a substantial burden on the mental health service.

7 NCBI Bookeshelf. Medication assisted treatment for opioid addiction in opioid treatment programs; Chapter 12. Treatment of co-occurring disorders file:///C:/Users/camim024/Documents/OFFICE%20OF%20THE%20COMMISSIONER/MENTAL%20HEALTH/DRUGS, %20ALCOHOL%20ABUSE%20%26%20GAMBLING/Chapter%2012.%20Treatment%20of%20Co- Occurring%20Disorders%20-%20Medication- Assisted%20Treatment%20for%20Opioid%20Addiction%20in%20Opioid%20Treatment%20Programs%20- %20NCBI%20Bookshelf.html (accessed 13th May 2015) 8 European Monitoring Centre for Drugs and Drug Addiction, Malta National Report 2012 9 Office of the Commissioner for Mental Health, Annual Report 2014 10 Ministry for Health, Annual Report 2011, Mount Carmel Hospital’s Annual Report for 2011 93

Admissions to the Dual Diagnosis Unit, MCH

According to the Malta National Report to the European Monitoring Centre for Drugs and Drug Addiction, in 2012, there were 44 individuals who made use of the Dual Diagnosis Unit, an eight- bedded unit for males. The average age of treated clients was that of 35 years of age.11 On the other hand, the 2012 Annual Report of the Ministry for Health states that there were 128 admissions to the DDU in 2012. Of these, 36 were referred from the Detox Out Patients, 12 from Caritas, and the remaining 80 from either GPs or other wards within MCH12. The Annual Report for 2011 provides the information that 87% had been admitted on an informal (voluntary) basis. It is to be noted that a small unit for female patients was opened last year (in 2014).

Service providers tell us that a number of substance abusers voluntarily seek help at MCH as this is their only place of refuge when their money runs out. They are also ready to claim that they are suicidal since they know they will not be refused admission on this account. Unfortunately many of them remain a revolving door syndrome.

Treatment Services13,141516

The main drug treatment providers in Malta are:

 SEDQA, the national agency against drugs and alcohol abuse, within the Ministry for Family and Social Solidarity, which includes the Substance Misuse Out-Patient Unit (SMOPU);  SATU (Substance Abuse Therapeutic Unit) which is prison-based and falls under the responsibility of the Ministry of Justice and Home Affairs;  the DDU (Dual Diagnosis Unit) within Mount Carmel Psychiatric Hospital which falls under the responsibility of the Ministry for Health,  the Gozo Hospital Detoxification Unit,  Caritas and Oasi Foundation, non-governmental organizations run by the Catholic Church, which receive partial financial support from the Government. Treatment modalities can be classified into four main categories: (1) outpatient community services, (2) detoxification treatment, and (3) substitution maintenance treatment, and (4) rehabilitation residential programmes.

1. Outpatient and other community services: There are seven (7) community outpatient services which offer long- or short-term support through social work, counselling, group therapy and

11European Monitoring Centre for Drugs and Drug Addiction, Malta National Report 2012 12 Ministry for Health, the Elderly and Community Care, Annual Report 2012 13 European Monitoring Centre for Drugs and Drug Addiction, Malta National Report 2012 14 European Monitoring Centre for Drugs and Drug Addiction, Drug Treatment Overview for Malta, file:///C:/Users/camim024/Documents/OFFICE%20OF%20THE%20COMMISSIONER/MENTAL%20HEALTH/DRUGS, %20ALCOHOL%20ABUSE%20%26%20GAMBLING/EMCDDA%20_%20Drug%20treatment%20overview%20for%20 Malta.html (accessed 18th May 2015) 15 Caritas Malta, New Hope –Rehabilitation from Drug Abuse, http://www.caritasmalta.org/?m=services&id=3#Outrerach (accessed 18th May 2015) 16 http://www.fsws.gov.mt/en/sedqa/Pages/care-services.aspx

94 psychological interventions. In addition Caritas offers an Outreach (First Contact Service) for drug users, their families and significant others to help to orientate them towards further holistic care and rehabilitation.

2. Detoxification: This occurs at the Substance Misuse Out-Patient Unit (SMOPU) run by SEDQA as well as in the Dual Diagnosis Unit, MCH, the Gozo Hospital Detoxification Unit, and Dar l-Impenn at Hal-Farrug (inpatient unit); the latter also run by SEDQA. In addition Caritas assists clients in their detoxification process at the Harm Reduction Shelter in San Blas, Zebbug and prepares them for rehabilitation.

3. Substitution Maintenance Treatment: A centralised methadone treatment unit in Malta, the Substance Misuse Outpatient Unit (SMOPU), provides substitution treatment. The Gozo General Hospital also offers methadone treatment. Methadone maintenance treatment was introduced in 1987. In 2005 take-home methadone prescriptions were introduced, and in 2006 treatment with buprenorphine began, in addition to methadone. Buprenorphine is given as a take-home dose, and is available by prescription from either SMOPU or a general practitioner. However, the treatment is mainly initiated and administered by treatment centres, and only few general practitioners offer substitution treatment. In 2012 a total of 1094 clients were in opioid substitution treatment, of which 1013 received exclusively methadone and 32 received exclusively buprenorphine-based OST. The remaining patients in substitution treatment switched medications, including dihydrocodeine, during the year.

4. Rehabilitation residential programmes: There are two (2) main residential rehabilitation programmes for persons with psychoactive drug abuse — a two-year programme provided by Caritas at San Blas, Zebbug, Therapeutic Community for males and at Dar il-Vittorja, Birkirkara for females; and an 18-month programme provided by SEDQA at Komunita’ Santa Marija, Hal-Farrug. Both programmes offer a holistic, multidisciplinary approach to therapy in a communal living environment and aim to guide clients towards abstinence. SEDQA also offers Day/Residential Rehabilitation Programmes for persons with alcohol-related problems at Dar Zerniq, Hal-Farrug. In addition Caritas offers an Evening Programme to persons who are not suited to a residential programme. The OASI Foundation provides a short-term residential programme followed by continuing care sessions, and also offers day programmes.

After successful completion of the programme, Caritas also provide a Re-Entry Programme and an AfterCare Programme aimed at further self-development and the provision of a support network to help them maintain drug abstinence and achieve fulfilment in life. SEDQA offer an 8-week additional programme at the Assessment and Stabilisation Unit (ASU) at Hal-Farrug.

Prison inmates with a drug abuse problem are given special leave to follow the Caritas Rehabilitation Programme in more homely surroundings at Bahar-ic-Caghaq.

Other support services17 and social re-integration18

Through the Harm Reduction Shelter in San Blas, Zebbug, Caritas also offers help in the form of a homely and caring environment to homeless people with a drug use issue with the aim of providing

17 Caritas Malta, New Hope –Rehabilitation from Drug Abuse, http://www.caritasmalta.org/?m=services&id=3#Outrerach (accessed 18th May 2015) 18 European Monitoring Centre for Drugs and Drug Addiction, Malta National Report 2012

95 them with stability and support which they may be missing from their lives. In addition, being a Catholic Church organisation, CARITAS provides the spirituality dimension as a backdrop to rehabilitation, and aims to deliver the Good News of Salvation to those that are disposed to receiving it.

The Employment and Training Corporation (ETC) works with SEDQA, CARITAS, the Probation Services and Corradino Correctional Facility (CCF) to provide training and employment for persons who have successfully managed to overcome their drug use problem. In 2012, there were 184 registered unemployed known substance abusers, 140 registered ex-prison inmates, and 62 registered unemployed “social cases” which include some substance abusers. The (Ex)-Substance Abuse Monitoring Board made up of representatives from ETC, SEDQA and the Department of Social Security, evaluates and monitors the employment status and employment prospects of such clients, providing them with additional assistance if needed. During 2012, this Board interviewed 67 such clients.

Gaps in Services

This paper has tried to provide an outline of the various services offered locally to persons with problem psychoactive substance use. We have no doubt as to the dedication and professionalism with which all these entities have provided services over the years and continue to do so. However, in the 6 months since we have been entrusted with overseeing the implementation of the Mental Health Act in terms of involuntary admissions to Mount Carmel Hospital, we have become increasingly concerned that despite all these services there are still gaps mainly in relation to those persons who fail to comply with the requirements of the treatment programmes offered.

These persons are finding themselves revolving door clients in Mount Carmel Hospital, their last port of call. We understand that the requirements of the programmes are rigorous and necessary and that strict discipline and adherence are integral components of success, but we have to accept the fact that not all people will manage to comply, despite the repeated efforts and after programmes of care provided by all entities. The fact remains that we still need to find adequate solutions to address these individuals, primarily for themselves but also for the good of society.

Recommendations

We base our recommendations on the following premises19:

1. Addiction is a treatable disease. There is an evidence base of interventions that help people stop abusing drugs and resuming productive lives.

2. Addiction is a chronic disease which can be managed successfully.

3. Relapse does not mean that treatment has failed. Relapse is an accepted occurrence in all other chronic medical conditions. Infact relapse rates for people treated for substance use disorders have

19 National Institute on Drug Abuse. Treatment and Recovery; http://www.drugabuse.gov/publications/drugs-brains- behavior-science-addiction/treatment-recovery (accessed 21st May 2015)

96 been shown to be similar to relapse rates for Type 1 Diabetes, hypertension, and asthma. Thus relapse serves as a trigger for renewed intervention.

Proposed approaches

We propose 3 tiers of solutions on a needs-based approach:

1. Sober living homes20,2122

In a residential alcohol or drug rehabilitation programme, every hour of the day is practically scheduled and devoted to recovery. Real-life will bring pressures, responsibilities and temptations which must be faced. Maintaining a dependable support system where understanding and encouragement are assured is invaluable.

In addition to the aftercare programmes already delivered we propose the possibility of opening up sober living homes. These are clean and sober environments where those who have completed rehabilitation may choose to live but which do not offer treatment or therapy groups. Persons living in sober homes share responsibilities among themselves as they prepare to transition back into a life of full responsibility. They usually pay their own rent, buy their own food and do the same things they would do for themselves if they lived in a regular home. Residents can usually come and go as they please as long as they follow certain house rules, for example being home by a certain time in the evening and subjecting themselves to random drug tests to prove that they are sober.

Living in a sober house is not a passive phase. Whilst in sober housing, persons are given a support base from which they can organise a job-search and find adequate employment or training, search for and find suitable housing; and find a support network in which to rebuild relationships.

Sober-living homes or “half-way houses” may help to bridge the gaps from total-immersion residential care facilities to the unrestricted environments that they came from before entering care, and may reduce the risk for compulsive substance abusers to revert to their old patterns of use shortly after being discharged.

2. Programmes for frequent relapsers or non-compliant clients – (“Remedial classes”)

We have been led to understand that persons who fail to complete or otherwise comply with the requirements of the residential treatment programmes, will be asked to leave the programme and will not be able to re-enter the programme for some time. In our opinion this subset of persons will require more intensive and concerted interventions. Therefore we propose that this matter be looked into and that specialised “remedial” and personalised programmes and outreach services are

20 Promises Treatment Centres; http://www.promises.com/articles/aftercare/ (accessed on 21st May 2015) 21 Rehabs. com; Sober living homes and housing options; http://www.rehabs.com/about/sober-living/ (accessed on 21st May 2015) 22 Recovery.org; Sober living communities and housing options; http://www.recovery.org/topics/recovery-homes/ (accessed on 21st May 2015)

97 developed for this subset of clients. These persons may be the ones who tend to turn up at the doors of MCH, end up homeless or find themselves in prison.

3. Drop in shelters (aimed at reducing homelessness and criminal activity)

There may remain a subset of individuals who either lack motivation or support or have the necessary skills or perseverance or insight to ever make it through a rehabilitation programme or to live in a communal residence, no matter how intensive and far-reaching the services offered. For this subset we propose the development of day and night drop-in shelters which provide the essential basics i.e. food, a place to sleep when needed, a place to wash/clean oneself, a place where to stay in from the cold or heat of the day, and possibly be administered basic medical or nursing help, in an atmosphere in which clients are neither blamed nor forced to comply to treatment but are merely given a last ray of hope in order to make it through from one day to the next.

This said, drop-in centres and daytime shelters are excellent sites for attracting homeless substance abusers into outreach and early intervention services23. These centres may also offer psychological help, spiritual help and other professional help if the clients look for such help. These shelters can also offer a point of contact to persons who had previously attempted rehabilitation but failed. Clients can be invited to give their opinion as to why they failed the programme and may serve to give ideas as to how to devise and develop individualised “remedial” programmes.

Funding

We believe as that for all other societal problems, the prime funder should be the state. The Church, NGOs and voluntary organisations should be encouraged to contribute human resources, premises and other resources. National fund-raising initiatives to support such approaches could be used. The President’s Community Chest Fund could be another part source.

M CAMILLERI

23 Gilders, Ian. (1997). Alcohol use disorders in homeless populations. National Institute of Alcohol Abuse and Alcoholism. http://pubs.niaaa.nih.gov/publications/Social/Module10DHomeless/Module10D.html (accessed 22nd May 2015)

APPENDIX 4

Report on Visits to

Mental Health

Licensed Facilities

Conducted in 2015

http://commissionermhop.gov.mt 99

Contents Section Title 1.0 Introduction 1.1 Preamble 1.2 Objectives 1.3 Aims 2.0 Methodology 2.1 Assessment tool 3.0 Results 3.1 Assessment of care environment 3.1.1 General care environment 3.1.2 Staff and patient Observation by care facility 3.2.1 Detailed analysis of hospital wards 3.2.1.1. Environmental scores in hospital facilities 3.2.1.2. Smoking area 3.2.1.3 Staff and patient observation by ward 3.3 Medical records 3.4 Patient experience questionnaire 3.4.1 General information about interviewees 3.4.2 Patient safety 3.4.3 Activity 3.4.4 Autonomy and privacy 3.4.5 Patient experience 3.5 Child guidance clinic 3.6 Saint Vincent de Paule 4.0 Discussion 4.1 Patient dignity, care providers and care environment 4.2 Rights, participation in care process and care experience 4.3 File organisation 5.0 Limitations 6.0 The way forward Annex 1 Annex 2

100

List of Figures

Figure Title Number 1 Safety score by care facility 2 Enviromental score by care facility 3 Score for Staff Professionalism and Interaction with Patient by Care Facility 4 Score for Patient Hygiene and Upkeep by Care Facility

5 Safety score by ward 6 General environment score by ward 7 Staff behaviour by ward 8 Patient hygiene and upkeep by ward 9 Diagnosis’ documentation in medical record by care facility 10 File organisation by care facility 11 Medical record content in line with MHA requirements 12 Number of interviewees by type of care 13 Number of respondents by gender and age group 14 Number of respondents by gender and type of care 15 Respondents by region of residence 16 Interviewees’ responses to MHA requirements by type of care 17 Level of activity by type of facility 18 Percentage of patients going outdoors and unaccompanied by care category 19 Mobile phone use by facility

List of Tables

Table Number Title 1 Presence of smoking rooms/designated areas for smoking on wards 2 File documentation 3 Response (%) to listed questions

101

Abbreviations

GGH Gozo General Hospital MCH Mount Carmel Hospital MDH Mater Dei Hospital MHA Mental Health Act MDCP Multidisciplinary Care Plan HWH Half Way House SVPR Saint Vincent de Paule Residence

102

1.0 Introduction

1.1 Preamble

Article 6 (k) of the Mental Health Act (MHA) states that the Commissioner for Mental Health is to ‘Conduct regular inspections, at least annually, of all licensed facilities to ascertain that the rights of patients and all provisions of this Act are being upheld.’ To this end, the Office of the Commissioner for Mental Health is embarking on visits to Mental Health facilities.

1.2 Objectives

To ensure that persons using the services of licensed mental health facilities

 are cognisant of their rights,  are protected from any discrimination,  have a positive healthcare experience with the necessary care interventions.

This would contribute towards their reaching of their full potential through the acquisition of the necessary skills to function in as an independent manner as possible in the community. 1.3 Aims

The specific aims of the visits in 2015 were to:

1. Ensure that patients are being taken care of in a dignified manner by dedicated staff in a suitable environment 2. Explore whether service users are aware of their rights, participate in their care process and assess their care experience 3. Assess the manner and extent of the organisation of medical records and their content, especially documentation required by the Mental Health Act.

103

2.0 Methodology

All mental health licensed facilities listed in Subsidiary Legislation 262.04: Designation of Places as Hospital Order were visited. The facilities visited may be broadly divided into hospital, residential and a child guidance/out patient unit. Every category has its specific modalities of care. Although hospitals have been placed in one group, this is far from a homogeneous one. In fact, local hospital wards may be categorised into those providing acute care, chronic care or rehabilitation. The interventions in these three categories should be tailored according to the particular needs of their respective service users. Our assessment was more focused on the wards prevalently providing acute care as we believe that this is the place where intervention should be most intensive if the highest dividends are to be reaped. The same should theoretically be said for the rehabilitation wards, however our visits in 2014 unfortunately revealed that the patients on these “rehabilitation” wards have mostly become institutionalised, rehabilitation is sparse and reintegration of these chronic patients back in the community is nearly impossible.

The needs of individuals in the public residential home, namely Saint Vincent de Paule Residence (SVPR), are somewhat more uniform because they tend to fall into one diagnostic category, that of dementia. Moreover, they are different to service users in hospital facilities and community residences, thus they will be treated separately.

Clients of the Richmond Foundation in community residences and clients at the Half Way House (HWH) will be treated in one group.

In this report, licensed mental health care facilities will be divided into four main categories namely;

. Hospitals – Mater Dei (MDH) Psychiatric Unit, Mount Carmel (MCH) and Gozo General (GGH)24 . Residential facilities - Richmond hostels and Half Way House (HWH), . Saint Vincent de Paule residence (SVPR) and . Child Guidance clinic/outpatients clinic.

24 Acute, Chronic & Rehabilitation wards where present 104

Since hospitals offer wide modalities of care and the majority of respondents are receiving hospital care, an extra section in this report will be dedicated to them. The Child guidance / out patient facility has been put in a category of its own, but will not be included in all the analysis, as some of the indicators being assessed may not be relevant. Thus a small paragraph will be dedicated to it.

2.1 The Assessment Tool

The visits were performed by two teams of four persons each, with the Commissioner being present throughout the visits. The rest of the teams were each composed of a medical person, a legal person and a fourth member with a social background. The visits ran from the 19th August till the 1st October 2015.

In order to assess whether service users’ rights are being upheld and that they are receiving dignified and appropriate care, an in-house questionnaire was devised that allowed comparison of certain aspects of care across the different categories. Additions to this basic questionnaire were included to capture certain features of defined care modalities and to help explore further if the interventions undertaken in the different settings were commensurate to the patient’s particular needs. For instance a patient on an acute ward will need specific interventions that might not be received in a residential setting. The quality of responses depends on the capacity of the patient to respond to the questions posed by the visiting team. In all, four types of questionnaires were used namely for; (i) acute care, (ii) chronic care, (iii) residential care and (iv) out-patients care. The questionnaires also included a section on file organisation. A checklist to assess the general environment was devised and used across all units visited.

In the acute ward settings, it was our objective to interview patients who have overcome the acute phase of their crisis, have been stabilised and were due to be discharged as we believe that they were best placed to answer our questionnaire. The underlying reason was to enable the team to capture all the possible aspects of care from a service user point of view. Unfortunately, due to logistic purposes, patients interviewed did not satisfy all the above criteria but all were stable enough to be able to answer the questions in a coherent manner. Our objective was to ascertain that patients who are potentially able to live independently or with minimal support in the community, would receive more intensive

105 acute care to strengthen their autonomy and facilitate their successful return to the community. This group of patients is more strongly represented than other patient groups in this analysis.

3.0 Results

Our findings on the assessment of care in the various care categories are divided into the following sections:

. Assessment of the ward/care environment in hospitals, residential facilities and SVPR with more in depth analysis with regards to Hospital wards . Patient questionnaire according to the prevalent type of care offered; Acute, Chronic, Residential and SVPR . File documentation in all care units

3.1 Assessment of care environment 3.1.1 General Care Environment

Safety of the unit was assessed against a set of parameters namely protective measures to avoid falls, security measures, presence of fire extinguishers and call for help buttons in bathrooms and bedrooms (Annex 1). A scoring system was devised - a score of two (2) was allotted if the safety parameter was present and functioning. If it was partly present the score assigned was one (1) and if the parameter was not present a nil (0) score was given.

Assessment of the general environment included the upkeep of the place, light, airiness, noise, cleanliness and presence or absence of unpleasant odours. The professionalism and interaction of staff with patients were observed during the visit. The hygiene and upkeep of the service users were also observed. All these features were scored on a scale from one (1) point to ten (10) points with ten points being assigned for outstanding achievement. In addition, the presence or otherwise of a smoking room and if this area was adequately ventilated was noted.

Each score allocated to every parameter was reached through consensus of the team members that had participated in the particular visit.

106

Figure 1 Safety score by care facility

SVPR scored highest for safety (Figure 1). This is understandable as patients in this setting suffer from dementia and require more care and support.

Figure 2 Enviromental score by care facility

Environment is worst in hospital facilities (Figure 2); mostly in MCH and GGH. Having said that, there is wide variation between the wards, as wards that have been recently refurbished scored high. A more detailed analysis of hospital findings may be found hereunder. 107

3.1.2 Staff and Patient Observation by Care Facility

Figure 3 Score for Staff Professionalism and Interaction with Patient by Care Facility

Figure 4 Score for Patient Hygiene and Upkeep by Care Facility

The observation of staff and patients in the different mental health facilities was undertaken during our visits (Figures 5 & 6). Although the scores allocated were as objective as possible, the tool used was not a validated one.

Staff professionalism and interaction with patients was highest in residential facilities (Figure 5). Residential facilities also fared best with regards to clients’ upkeep and hygiene (Figure 6).

108

3.2.1 Detailed Analysis of Hospital Wards

3.2.1.1 Environmental Scores in Hospital Facilities

This section includes all the wards at Mount Carmel Hospital, the Long Stay (LSW) and Short Stay (SSW) wards at the Gozo General Hospital (GGH) and the Psychiatric Unit (PU) at Mater Dei Hospital (MDH). There were no significant differences in the scores for both ward safety and ward environment between Mount Carmel Hospital and Gozo General Hospital (Figures 5 & 6). However, there is a great discrepancy between these scores and those obtained at the Psychiatrich Unit (PU) at Mater Dei Hospital. The gold standard for the comparison of safety and environment in wards should be that attained at the Psychiatric Unit (PU) at Mater Dei Hospital.

Figure 5 Safety score by ward - MCH wards, LSW & SSW at GGH and PU at MDH (see legend below)

DDU_F- Female Drug dependence unit, DDU_M-Male Drug dependence unit, FFU-Female Forensic unit, FW1- female ward 1, FW2-Female ward 2, FW3A-Female ward 3A, FW3B-Female ward 3B, FW7-Female ward 7, MAW-Mixed admission ward, MFU-Male forensic unit, MW1-male ward 1, MW3A-Male ward 3A, MW3B-Male ward 3B, MW7-Male ward 7, MW8B-Male ward 8B, SU-Secure unit, LSW-Long stay ward, PU-Psychiatric unit MDH

Ward scores for safety seem to generally be lower than those for the general environment (Figures 5 & 6). Three (3) wards at MCH, namely the Female Forensic (Forensic_F), Male Ward 8B (MW8B), and Male Dual Diagnosis Unit (DDU_M) scored less than 50% for safety. Only 8 (44%) of the 18 MCH wards score above 50% for safety (Figure 5).

109

Figure 6 General environment score by ward - MCH wards, LSW & SSW at GGH and PU at MDH

When the environmental aspect was assessed, there was wide variation between the wards with again the best environment being that at the Psychiatric Unit (PU) at Mater Dei Hospital (MDH) with a score of 88% (Figure 4). The environment in the Female Medical Ward (FW2), the Male Ward 8B (MW8B), the Mixed Admission Ward (MAW) and the Male Forensic Unit (MFU) scored less than 50%, with the latter ward scoring a mere 22%.

The scoring system employed may not have captured certain features, but gives a relative indication of the level of safety and the environment within these units. The safety scores are on average less than those for the environment. This may be attributed to the fact that the vast majority of wards do not have a call for help button in bedrooms and toilets.

3.2.1.2 Smoking Area

Smoking is a common behaviour of service users. In order to protect non-smokers from secondary smoking, our assessment ensured the presence of appropriately ventilated smoking areas. Outside smoking areas were also considered as dedicated smoking areas.

110

The smoking room on Male Ward 1 (MW1) was also the television room with the consequence that non-smokers who opted to watch television in this area were exposed to cigarette smoke (Table 1). Although this area per se was appropriate for smokers, it was highly discriminatory against non smokers and thus a rethink of the smoking area is highly warranted. Some of the wards listed as not having an adequate smoking area might have had a designated smoking room which was either poorly ventilated or when the underlying purpose of having a smoking area to limit cigarette smoke to the designated area was being defied. For instance on one of the wards at MCH, the patients had their cigarette lit by staff and walked through the ward before reaching the smoking room with the consequence that cigarette smell was all over the ward. It is to be underlined that most wards have a restricted smoking regime; the quota often being one cigarette per hour.

Inadequate smoking room Adequate Smoking room DDU_M DDU_F Forensic_M FW1 Forensic_F FW3B FW2 FW7 FW3A FW8 M8B_Asylum Seekers MW7 MAW LSW (Gozo Hospital) MW2 MDH MW3A MW3B Secure Unit MW1 SSW (Gozo Hospital) Table 1 Presence of smoking rooms/designated areas for smoking on wards

111

3.2.1.3 Staff and patient observation by ward

Figure 7 Staff behaviour by ward

Figure 8 Patient hygiene and upkeep by ward

112 ward 3B, MW7-Male ward 7, MW8B-Male ward 8B, SU-Secure unit, LSW-Long stay ward, PU-Psychiatric unit MDH Observations of ward safety and environment, staff and patients do not follow any particular trend as wards that do well in some aspects fair badly in others. The ward which performed best in all aspects is the psychiatric unit (PU) at Mater Dei Hospital (MDH).

3.3 Medical Records

Part of the audit was dedicated to the inspection of medical files. This was usually done with the assistance of the unit charge nurse or the deputy. The nurse was asked to find particular documentation in the file. The level of organisation of the file was assessed by how easy it was to retrieve the following records:

. Patient status (Voluntary, Involuntary or other) . Diagnosis . Documentation required by the Mental Health Act (MHA): o consent form o responsible carer appointment form o multidisciplinary care plan. The patient’s status was recorded in nearly all patients in hospital facilities (96%), but was not recorded in any of the residents’ medical records at Saint Vincent de Paule’s residence and was not clear or absent in 40% of the residents in residential facilities.

A diagnosis was considered to be present if it was easily retrieved by the file user. Ideally the diagnosis is printed on the front page of the file or at the front of the current hospital admission folder which should also be placed at the front of the medical file. ICD-10 codes were not taken to be a record of the diagnosis as the nurses themselves could not decode it, so it was of practically no help to the staff caring for the patient. Table 2 below gives a summary of the amount (percentage) of medical files that contained the documents in the list. Only one per cent of the medical records had the completed set of documents as required by the Mental Health Act.

113

File documentation Present (%) Patient status 80 Diagnosis 39 Consent form + Responsible Carer + Care Plan 1 Completed consent form 63 Completed responsible carer form 39 Completed care plan 11

Table 2 File documentation

Figure 9 Diagnosis’ documentation in medical record by care facility

Although diagnosis is a basic requirement for care, it is not easily retrieved in MCH records and is absent from medical records of patients at MDH (Figure 9).

114

Figure 10 File organisation by care facility

A record was considered to be organised if it contained patient status and diagnosis, a consent form, appointment of responsible carer form and a multidisciplinary care plan which were correctly completed and easily retrievable. The most organised medical records were those found in residences (Figure 10).

Figure 11 Medical record content in line with Mental Health Act (MHA) requirements

115

The completion of the consent form was common practice at MDH, and consent taking is satisfactory in community residences and MCH but is still not commonly practised at GGH and not at all at SVPR. A multidisciplinary care plan was found in half of the medical records of community residents but is still not a common content of the medical record of patients receiving treatment at MCH and was absent in patients at MDH. The appointment of a responsible carer is still far from satisfactory in all mental health licensed facilities.

3.4 Patient Experience Questionnaire

3.4.1 General information about interviewees

A total of 75 persons (38 males and 37 females) were interviewed. The number of persons interviewed by type of care received is depicted in Figure 12 below. The three persons interviewed at the child guidance clinic are included in the general demographics but since their situation is unique they will be treated separately.

Figure 12 Number of interviewees by type of care

The highest proportion of repondents are coming from acute care settings and make up nearly half (45%) of the sample (Figure 12). The commonest age group was in the 35-44 year bracket (Figure 13).

116

Figure 13 Number of respondents by gender and age group

Figure 14 Number of repondents by gender and type of care

117

Figure 15 Repondents by region of residence G&C-Gozo & Comino; N-Northern; NH-North Harbour; SE-South East; SH-South harbour; W-Western

The interviewees’ responses to whether they had appointed a responsible carer, were informed about their care process, signed a consent form and whether their rights were explained to them is shown in Figure 16 below.

Figure 16 Interviewees reponses to MHA requirements by type of care received RC-reponsible carer; Info-information about their condition;

118

There was some discrepancy between the patients’ reponse to whether they had appointed a responsible carer and the documentation supporting this in the file. Out of the 24 repondents who said that they had appointed a responsible carer, 21 had a completed form, 3 did not have a form supporting their claim and one had an incomplete form, giving a concordance rate of 8:7. Out of the 30 patients who said that they had signed a consent form, there were only 25 forms supporting their claim, with a concordance rate of 6:5.

No. Question Yes (%) 7 Were your rights explained to you? 23 9 Do you feel you were involved as much as you wanted in the care 65 process? 10 Do you feel you were treated with respect and dignity while you were on 89 the ward? 11 Do you feel the staff were kind and caring towards you while you were on 93 the ward?

Table 3 Response (%) to listed questions

As seen in table 3 above, the question which was most difficult to elicit a reponse was question 7 about whether the rights of the patient had been explained to them.

3.4.2 Patient Safety

Patients on acute wards were asked the question; ‘Whilst you were on this ward, were you ever threatened by a patient or staff?’ Out of the 34 respondents to this question, 13 answered in the affirmative, but only 2 of these had reported the incident. Reasons given for not reporting included; (i) because incident was witnessed by the nurses themselves and so there was no need to report it, (ii) patient was unaware of the availability of a reporting system, (iii) patient making the threat was a minor, (iv) patient was scared to report and (v) did not feel the need to report.

Nearly half (47%) of the patients on acute and chronic wards stated that they had been placed in seclusion or locked in a single room whilst they were on the ward.

119

3.4.3 Activity

Over two thirds (69.33%) of the respondents claimed that they were active during the day. More than half the interviewees (52%) said that they did not undergo any activities during the evening and on weekends (Figure 17).

Figure 17 Level of activity by type of Facility

When the level of activity was assessed on MCH wards, it transpired that only 57% of the interviewees in the Mixed Admission Ward (MAW) took part in day activities and 14% in activities during the evening or the weekend. There were no evening or weekend activities on wards MW2, FW3B, FW3A, and Female Forensic Unit. The patients interviewed from FW2 do not participate in any activities. The most popular activities undertaken are attending Occupational Therapy sessions, reading and watching TV. Some respondents listed smoking as an activity. The number of outings organised are few and far apart especially during the week end. On the other hand individuals in community residences and Half Way House (HWH) are more active as they are assigned household duties such as cleaning and cooking and participate in more leisure activities mostly outings during the weekend.

120

3.4.4 Autonomy and Privacy

To assess autonomy, the interviewees were asked whether they go outdoors and if they do so accompanied or unaccompanied. However, it is to be pointed out that the levels of autonomy vary in that some of the respondents just went out in the yard adjoining the ward, others ventured into the main garden at MCH, whilst those in community residential facilities ventured outside (Figure 18). One must also keep in mind that some patients are not allowed to go into the main garden by the responsible specialist either as part of witholding their privilidges because they had disobeyed instructions or misbehaved or because it is not safe for them to do so.

Figure 18 Percentage of patients going outdoors and unaccompanied by care category

121

Figure 19 Mobile phone use by facility

When asked whether they used a mobile phone, interviewees who answered in the negative gave different reasons for not making use of a mobile phone in that some did not own one or they did not know how to use it. However, it was evident that most of the wards adopted a policy which did not allow the use of mobile phones. It must be pointed out that all wards had pay phones that could be used by patients. These phones were situated in corridors so making it impossible for a person to talk in private. Wards allowing the use of mobile phones include the Short and Long Stay wards at GGH, the Psychiatric Unit at MDH, and MW2, MW3A, MW3B, FW7, FW8 at MCH. Residential facilities, including the Half Way House allowed the use of mobile phones (Figuer 19).

Over two thirds (69%) of respondents in care claim that they were able to recieve relatives in private. However, this means that nearly a third do not enjoy any privacy.

3.4.5 Patient Experience

When asked to put forward suggestions which would improve their experience as a service user an array of reponses were elicited. Some patients expressed their satisfaction with the service and claimed to be happy there. The most frequent suggestions were the organisation of more activities; both physical such as the setting up of a gym, sport activities, the availability of board and table games and more outings. Another popular request was for the premises to be cleaner and better maintained. They also expressed their

122 wish to enjoy more privacy especially when using the bathrooms and to be less disturbed by other patients. With regards to service providers, the respondents would like doctors to be more attentive to their needs. Respondents also expressed the wish for better food. Some asked to be allowed to go outdoors or on leave more often. Also, some expressed the wish to acquire computer skills or to be taught academic subjects. The list of suggestions may be found in Annex 2.

3.5 Child Guidance Clinic

As already mentioned above, this is a unique category so it merits commenting on separately. This category was made up of three youngsters two (2) females and one (1) male, all less than 18 years of age attending the Child Guidance Clinic. They were all Maltese, one girl was in Year 6 primary schooling, a boy was attending form V secondary school whilst the other female was an MCAST student. The latter had been receiving care for the past 13 years, the boy for more than 10 years and the youngest girl for four years. They all had appointed a reponsible carer but only two of them had the appropriate form in the file. They knew what they suffered from and felt involved in their care process. None had signed the consent to treatment form. They felt that they were treated with respect and dignity by the service providers and that their questions were answered in a way they understood. Two found it difficult to commute to the service location.

One expressed the wish to have a particular medication to be inserted in the Government Formulary whilst another expressed the wish to be followed up by the same doctor. Only one of their files contained a sort of multidisciplinary care plan.

3.6 Saint Vincent de Paule (SVPR)

Saint Vincent de Paule (SVPR) was included separately in the figures, as though it is a residential unit, the care needed by these patients was very specific as they suffered from dementia. In fact the questionniare was answered by a relative of theirs in most cases. Also, replies given may not always reflect reality, so they must be interpreted in this spirit.

123

4.0 Discussion

The aims of the visits in 2015 were to:

1. Ensure that patients are being taken care of in a dignified manner by dedicated staff in a suitable environment 2. Explore whether service users are aware of their rights, participate in their care process and assess their care experience. 3. Assess the manner and extent of the organisation of medical records and their content, especially documentation required by the Mental Health Act. 4.1 Patient dignity, care providers and care environment

Patients are taken care of in a dignified manner when the environment within which care is received is safe, clean and comfortable and when the caregivers provide a professional and caring service. The vast majority of service users (89%) state that they feel treated with repect and dignity. Also, an overwhelming 93% feel that staff were kind and caring towards them. These two reponses show that service users are satisfied with the way they are cared for. MDH is the gold standard for safety and from the environmental aspect. Safety is still an issue on some wards at MCH and GGH. Investment in safety measures is surely needed especially in MCH wards Male Dual Diagnosis Unit (DDU_male), Female Forensic Unit (FFU) and Male ward 8B (MW8B). The physical environment also needs to be improved. The ward in dire need of this is the Male Forensic Unit, followed by Male Admission Ward (MAW), Male ward 8B (MW8B) and the Female Medical Ward 2 (FW2). One issue that needs to be tackled immediately is the relocation of the smoking area on MW1 as the fact that it also doubles as a television room is unacceptable. When one looks at the behaviour of staff, it is noted that staff at MDH and staff in residential facilities seem to be more professional and interact better with the patients than in the other care facilities. This also holds for the hygiene and upkeep of the patient. When interpreting these observations, one has to keep in mind that the patients in residential facilities are more receptive to instructions offered by staff and more autonomous in that they can take better care of their presonal hygiene and appearance.

124

4.2 Rights, participation in care process and care experience

Patients are still far from being empowered about their rights. In fact less than a quarter claimed that their rights had been explained to them, which shows that this is not common practice. The underlying reason could be that staff do not feel strongly that patients should be told about their rights and on the other hand patients are not aware about their rights. Although nearly two thirds (65%) of repondents feel they have participated in their care as much as they wished, it is difficult to assess to what extent they participated. Patients tend to be reluctant to submit reports when threatened by staff or other patients, showing that they fear retribution. They seem to accept the status quo and do not question anything.

Although the basic medical care is being provided, this is not being complemented by other interventions and activities which help the patient maintain or reacquire any lost skills. The level of activity on the wards especially during the weekend is extremely low. In fact, patients suggested an array of activities that they would like to have whilst in hospital. At MCH, activities during the day usually involve attending occupational therapy sessions at the activity centre with no such activities occuring on the wards. During our visits, we were informed that the patients attending such sessions is dwindling, due to lack of human resources. Occupational therapy is an integral part of treatment as it provides an opportunity for the patient to reattain his/her skills to facilitate the transition from being an in-patient to living in the community.

Privacy is not always being respected and seems to be very low on the priority list of staff. There is no established policy about the use of mobile phones which may make communication with relatives and friends difficult.

4.3 File organisation

Good documentation in files is conducive to patient safety and quality of care. The fact that the diagnosis of a patient is not easily retrievable on the file is unacceptable as it is a basic requirement to ensure safe care, especially if this is needed outside office hours when the caring team of the patient is not present. Also, the absence in most files of a multidisciplinary care plan surely affects the quality of care provided. The presence of

125 informed consent to treatment forms in all files at MDH, in 73% of files at MCH and in 90% of the community residencies is encouraging. GGH and SVPR are severely lagging behind in this respect. The most shocking finding was that only one particular file contained all the requirements of the MHA; namely completed forms for consent giving and for the appointment of a responsible carer and a multidisciplinary care plan. Moreover, it remains to be seen whether the information given to the patient is of the right content and in the right language for the patient to fully understand it before consenting to treatment. The appointment of a responsible carer and its documentation in the file is still greately lacking in all care facilities.

5.0 Limitations

Although every effort was made to be consistent in this audit there were some limitations that must be highlighted.

. There were two teams conducting the study and the mode of questioning and scoring might have varied. . To improve the reliability of responses we had requested that interviewees were stable and patients who were about to be released would be interviewed on acute wards. However, this was not always the case and reponses are to be interpreted with caution. . When looking at file documentation, the procedure suggested in the methodology might not have been always adhered to. . The facilities were informed when our visits were to take place, so the ward environment might not reflect everyday reality.

6.0 The way forward

During this year’s visit the team felt that some improvements have been made since the previous visit done a year before, although the extent cannot be measured tangibly. The patients seem to be better kept and some improvement in the overall physical environment has been noted. Staff seems to be more receptive to the needs of the patient and more collaborative. Medicines are stored in a better way and documentation has improved. The

126 wards are somewhat cleaner. However, a lot still needs to be improved for our objectives to be reached.

A cause for concern is that there is discrimination between the patients themselves, in that care is very dependent on which ward or in which facility one happens to be. This is not right. Standardisation of care is important to ensure that each patient is receiving optimal care in a decent environment, which care would hasten his/her recovery and a return to a more independent, productive life within the community.

Although change is gradually being brought about more investment needs to be made in the physical environment, in the continued professional education of all healthcare professionals so that they offer the best possible care to the patient and will be more sensitive to their needs. Certain requirements by law which can be easily implemented such as consent taking and appointment of a responsible carer, are still not being done ubiquitously as shown by the lack of documentation in the medical records. Also, patient and responsible carer empowerment needs to be strengthened through more information dissemination so that they are more aware of their rights and of seeking forms of redress.

127

Annex 1

The Tool

Environment

Ward ______Date______

Safety Yes No Partly

Risk assessment, falls prevention such as anti slip surfaces,

Security measures such as hall porter or receptionist to identify visitors

Fire extinguishers

Call for help button in bathrooms and bedrooms

General Comments about the environment of the house on a 1-10 (1 lowest & 10 highest)

General environment

Upkeep of place

Light

Airiness

Noise

Cleanliness

Unpleasant odours Smoking area if present well insulated from rest of place so as no smell of cigarettes Yes / flows to other areas (circle Yes or No) No

Staff

Interaction of staff with patients

Professionalism of staff

Service Users

Hygiene

Upkeep

128

General Comments: General Questions

Facility Hospital ______

Residence ______

Health Centre ______

Other Facility ______

Gender Male Age group (Years) <18 18 to 24 Female 25 to 34 35 to 44 Other 45 to 54 55 to 64

65 to 74 >74

Place of residence ______

Nationality Maltese

Non EU

Irregular Immigrant

Legal Status Single No. of dependents

Married Age(s)

Separated/Divorced

Other Specify ______

129

HOSPITAL-ACUTE 1 Have you been admitted against your will? Yes No Don’t know 2 Do you know what you suffer from? Yes No Don’t know 3 How long have you been on the ward? 4 Did you appoint a responsible carer? Yes No Don’t know 5 Were you made to feel welcome when you arrived on the ward? Yes No Don’t know 6a Was the care process explained to you? Yes No Don’t know 6b Did you sign the consent to treatment form? 7 Were your rights explained to you? Yes No Don’t know 8 Were your questions answered in a way you understand? Yes No Don’t know 9 Do you feel you were involved as much as you wanted in your Yes No Don’t know care process? 10 Do you feel you were treated with respect and dignity while you Yes No Don’t know were on the ward? 11 Do you feel the staff were kind and caring towards you while Yes No Don’t know you were on the ward? 12a Do you undertake any activities during the day? Yes No Don’t know 12b If yes, what? 13a Do you participate in any activities in the evening or on Yes No Don’t know weekends? 13b If yes, what? 14a Do you go outdoors? Yes No Don’t know 14b Alone, or with supervision? Alone Supervised Don’t know 15a Whilst you were on this ward, were you ever threatened by a Yes No Don’t know patient or staff? 15b If yes, did you report such an incident and to whom? Yes No Don’t know 15c If no, why didn’t you report it? 16 Whilst on this ward, have you been placed in seclusion/locked Yes No Don’t know single room? 17 Are you allowed to use your private mobile/tablet? Yes No Don’t know 18 Are you allowed to see your visitors in private if you wish to do Yes No Don’t know so? 21 Give any suggestions how your experience as a service user can be improved?

130

SPTAR – AKUT

1 Inti daħħluk l-isptar kontra l-volonta’ tiegħek? Iva Le Ma nafx

2 Taf x’għandek? Iva Le Ma nafx

3 Kemm ilek f’din is-sala?

4 Inti ħtart/appuntajt/għażilt carer responsabbli? Iva Le Ma nafx

5 Ħassejtek milqugħ/a meta daħħluk f’din is-sala? Iva Le Ma nafx

6a Fehmuk dwar il-kura li se tingħata? Iva Le Ma nafx

6b Iffirmajt il-formola tal-kunsens għall-kura? Iva Le Ma nafx

7 Spjegawlek x’inhuma d-drittijiet tigħek ? Iva Le Ma nafx

8 Jekk kellek xi domandi, irrispondewk b’mod li stajt tifhimhom? Iva Le Ma nafx

9 Tħoss li ġejt involut daqs kemm xtaqt fil-proċess tal- kura tiegħek? Iva Le Ma nafx

10 Tħoss li ġejt ittrattat b’rispett u dinjita’ kemm ilek f’din is-sala? Iva Le Ma nafx

11 Tħoss li l-istaff (nurses, tobba, fattigi, professjonisti oħra) kienu Iva Le Ma nafx qalbhom tajba u ġentili miegħek kemm ilek f’dis-sala?

12a Tagħmel xi attivitajiet matul il-ġurnata? Iva Le Ma nafx

12b Jekk iva, x’tagħmel?

13a Tipparteċipa f’attivitajiet organiżżati mill-istaff fil-għaxija jew fi Iva Le Ma nafx tmiem il-ġimgħa? (weekends)

13b Jekk iva, x’tagħmel?

14a Toħroġ barra s-sala (eż fil-ġnien jew bitħa)? Iva Le Ma nafx

14b Waħdek jew irid joħroġ xi ħadd mill-istaff miegħek? Waħdi Akkum Ma nafx panjat

15a Waqt li kont f’din is-sala, qatt ġejt mhedded minn xi pazjent jew Iva Le Ma nafx minn xi ħadd mill-istaff?

15b Jekk iva, irrapurtajtu dan l-inċident? – Kif u lil min?

15c Jekk le, għaliex ma rrappurtajtux?

16 Kemm ilek f’din is-sala qatt poġġewk fil-kamra tas-sekluxin / Iva Le Ma nafx waħdek f’kamra msakkra?

17 Iħalluk tuża l-mobile? Jew it-tablet? Iva Le Ma nafx

18 Iħalluk tara lilmin jiġi jarak l-isptar fil-privat, jekk tkun tixtieq? Iva Le Ma nafx

21 Agħti xi suġġerimenti ta’ kif l-affarijiet jistgħu jittranġaw sabiex l-esperjenza tiegħek bħala pazjent/a tkun aħjar?

131

HOSPITAL - CHRONIC

2 Do you know what you suffer from? Yes No Don’t know 3 How long have you been on the ward? 4 Did you appoint a responsible carer? Yes No Don’t know 6a Is the care process explained to you? Yes No Don’t know 6b Did you sign the consent to treatment form? 7 Were your rights explained to you? Yes No Don’t know 8 Are your questions answered in a way you understand? Yes No Don’t know 9 Do you feel you are involved as much as you want in your care Yes No Don’t process? know 10 Do you feel you are treated with respect and dignity? Yes No Don’t know 11 Do you feel the staff are kind and caring towards you? Yes No Don’t know 12a Do you undertake any activities during the day? Yes No Don’t know 12b If yes what? 13a Do you participate in any activities in the evening or on Yes No Don’t weekends? know 13b If yes what? 14a Do you go outdoors? Yes No Don’t know 14b Alone, or with supervision? Alone Supervised Don’t know 16 Whilst on this ward, have you been placed in seclusion/locked Yes No Don’t single room? know 17 Are you allowed to use your private mobile/tablet? Yes No Don’t know 18 Are you allowed to see your visitors in private if you wish to do Yes No Don’t so? know 21 Give any suggestions how your experience as a service user can be improved?

132

SPTAR – KRONIKU

2 Taf x’għandek? Iva Le Ma nafx

3 Kemm ilek f’din is-sala?

4 Inti ħtart/appuntajt/għażilt carer responsabbli? Iva Le Ma nafx

6a Ifehmuk dwar il-kura li qed tingħata? Iva Le Ma nafx

6b Iffirmajt il-formola tal-kunsens għall-kura? Iva Le Ma nafx

7 Spjegawlek x’inhuma d-drittijiet tigħek ? Iva Le Ma nafx

8 Jekk ikollok xi domandi, jirrisponduk b’mod li tista’ tifhimhom? Iva Le Ma nafx

9 Tħoss li tiġi involut daqs kemm tixtieq fil-proċess tal-kura tiegħek? Iva Le Ma nafx

10 Tħoss li tiġi ittrattat b’rispett u dinjita’ kemm ilek f’din is-sala? Iva Le Ma nafx

11 Tħoss li l-istaff (nurses, tobba, fattigi, professjonisti oħra) huma Iva Le Ma nafx qalbhom tajba u ġentili miegħek kemm ilek f’dis-sala?

12a Tagħmel xi attivitajiet matul il-ġurnata? Iva Le Ma nafx

12b Jekk iva, x’tagħmel?

13a Tipparteċipa f’attivitajiet organiżżati mill-istaff fil-għaxija jew fi Iva Le Ma nafx tmiem il-ġimgħa? (weekends)

13b Jekk iva, x’tagħmel?

14a Toħroġ barra s-sala (eż fil-ġnien jew bitħa)? Iva Le Ma nafx

14b Waħdek jew irid joħroġ xi ħadd mill-istaff miegħek? Waħdi Akkum Ma nafx panjat

16 Kemm ilek f’dis-sala qatt poġġewk fil-kamra tas-sekluxin / waħdek Iva Le Ma nafx f’kamra msakkra?

17 Iħalluk tuża l-mobile? Jew it-tablet? Iva Le Ma nafx

18 Iħalluk tara lil min jiġi jarak l-isptar fil-privat, jekk tkun tixtieq? Iva Le Ma nafx

21 Agħti xi suġġerimenti ta’ kif l-affarijiet jistgħu jittranġaw sabiex l-esperjenza tiegħek bħala pazjent/a tkun aħjar?

133

RESIDENTIAL FACILITY 2 Do you know what you suffer from? Yes No Don’t know 3 How long have you been in this residential facility? 4 Did you appoint a responsible carer? Yes No Don’t know 6a Was the care process explained to you? Yes No Don’t know 6b Did you sign the consent to treatment form? Yes No Don’t know 7 Were your rights explained to you? Yes No Don’t know 8 Are your questions answered in a way you understand? Yes No Don’t know 9 Do you feel you are involved as much as you want in your care Yes No Don’t process? know 10 Do you feel you are treated with respect and dignity? Yes No Don’t know 11 Do you feel the staff is kind and caring towards you? Yes No Don’t know 12a Do you undertake any activities during the day? Yes No Don’t know 12b If yes what? 13a Do you participate in any activities in the evening or on Yes No Don’t weekends? know 13b If yes what? 14a Do you go outdoors? Yes No Don’t know 14b Alone or under supervision? Alone Supervised Don’t know 17 Are you allowed to use your private mobile/tablet? Yes No Don’t know 18 Are you allowed to see your visitors in private if you wish to do Yes No Don’t so? know 21 Give any suggestions how your experience as a service user can be improved?

134

FAĊILITA’ RESIDENZJALI

2 Taf x’għandek? Iva Le Ma nafx

3 Kemm ilek f’dir-residenza?

4 Inti ħtart/appuntajt/għażilt carer responsabbli? Iva Le Ma nafx

6a Fehmuk dwar il-kura li qed tingħata? Iva Le Ma nafx

6b Iffirmajt il-formola tal-kunsens għall-kura? Iva Le Ma nafx

7 Spjegawlek x’inhuma d-drittijiet tigħek ? Iva Le Ma nafx

8 Jekk ikollok xi domandi, jirrisponduk b’mod li tista’ tifhimhom? Iva Le Ma nafx

9 Tħoss li tiġi involut daqs kemm tixtieq fil-proċess tal-kura tiegħek? Iva Le Ma nafx

10 Tħoss li tiġi ittrattat b’rispett u dinjita’ kemm ilek hawnhekk? Iva Le Ma nafx

11 Tħoss li l-istaff (kerers, sowxjil werkers, fattigi , eċċ) huma qalbhom Iva Le Ma nafx tajba u ġentili miegħek kemm ilek hawnhekk?

12a Tagħmel xi attivitajiet matul il-ġurnata? Iva Le Ma nafx

12b Jekk iva, x’tagħmel?

13a Tipparteċipa f’attivitajiet (organiżżati mill-istaff jew nies oħra) fil- Iva Le Ma nafx għaxija jew fi tmiem il-ġimgħa? (weekends)

13b Jekk iva, x’tagħmel?

14a Toħroġ barra r-residenza (eż fil-ġnien jew bitħa jew anki iżjed ’l Iva Le Ma nafx bogħod)?

14b Waħdek jew irid joħroġ xi ħadd mill-istaff miegħek? Waħdi Akkum Ma nafx panjat

17 Iħalluk tuża l-mobile? Jew it-tablet? Iva Le Ma nafx

18 Iħalluk tara lil min jiġi jarak l-isptar fil-privat, jekk tkun tixtieq? Iva Le Ma nafx

21 Agħti xi suġġerimenti ta’ kif l-affarijiet jistgħu jittranġaw sabiex l-esperjenza tiegħek bħala resident/a f’dan il-post tkun aħjar?

135

Care Facility ______

2 Do you know what you suffer from? Yes No Don’t know 3 How long have you been receiving this service/coming here? 4 Did you appoint a responsible carer? Yes No Don’t know 6a Was the care process explained to you? Yes No Don’t know 6b Did you sign the consent to treatment form? Yes No Don’t know 7 Were your rights explained to you? Yes No Don’t know 8 Are your questions answered in a way you understand? Yes No Don’t know 9 Do you feel you are involved as much as you want in your care Yes No Don’t process? know 10 Do you feel you are treated with respect and dignity as a service Yes No Don’t user? know 11 Do you feel staff are kind and caring towards you? Yes No Don’t know 12a Do you undertake any activities during the day? Yes No Don’t know 12b If yes what? 19 Do you find it difficult to commute to the service location? Yes No Don’t know 20 Do you work? Yes No Don’t know 21 Give any suggestions how your experience as a service user can be improved?

136

FAĊILITA’ TA’ KURA

2 Taf x’għandek? Iva Le Ma nafx

3 Kemm ilek tirċievi dan is-servizz/tiġi hawn?

4 Inti ħtart/appuntajt/għażilt carer responsabbli? Iva Le Ma nafx

6a Ifehmuk dwar il-kura li qed tingħata? Iva Le Ma nafx

6b Iffirmajt il-formola tal-kunsens għall-kura? Iva Le Ma nafx

7 Spjegawlek x’inhuma d-drittijiet tigħek ? Iva Le Ma nafx

8 Jekk ikollok xi domandi, jirrisponduk b’mod li tista’ tifhimhom? Iva Le Ma nafx

9 Tħoss li tiġi involut daqs kemm tixtieq fil-proċess tal-kura tiegħek? Iva Le Ma nafx

10 Tħoss li tiġi ittrattat b’rispett u dinjita’ bħala persuna li tuża dan is- Iva Le Ma nafx servizz?

11 Tħoss li l-istaff (nurses, tobba, kerers, sowxjil werkers, fattigi , eċċ) Iva Le Ma nafx huma qalbhom tajba u ġentili miegħek kemm ilek tiġi hawn?

19 Issibha diffiċli biex tasal hawn? (trasport) Iva Le Ma nafx

20a Inti taħdem/tistudja? Iva Le Ma nafx

20b Jekk iva x’tagħmel?

21 Agħti xi suġġerimenti ta’ kif l-affarijiet jistgħu jittranġaw sabiex l-esperjenza tiegħek bħala persuna li tuża dan is-servizz tkun aħjar?

137

Medical Record Documentation

Status of Patient Voluntary Involuntary Not Indicated

If Involuntary Status; stage of involuntary care IAO IATO EIATO CDO CTO

Diagnosis Present Yes No

Present Incomplete Not Present

Consent to Treatment

Responsible Carer Established

Multidisciplinary Care Plan

File Organisation Satisfactory Poor

Comments:

138

Annexe 2

Activities like Tombola, radio, reciting the rosary & going out in the garden Activity centre Air conditioner to enable proper smoking Am happy, would like to remain here till I'm well Answered by sons of patient; Food too hard, there are no activities during day; propose singing, playing, concerts. They are not taken out like, canopy to protect from sun Arrange garden, more activities Better access to visitors, some members of staff are a bit rough Better cleaning & maintenance of sanitary facilities. Pt claims that MCH is better than a 7 star hotel. Claimed that whenever pts are aggressive medication is increased Better than MCH, staff are warm and understanding, will not find better Better toilets, more privacy Better welcomed Certain staff should be more caring towards older, sick and inmates requiring more attention & care. Would like further activities both communal & individual Difficult to keep clean Dirty rooms infested by ants. No facilities for disabled persons. No activities. Need for gym, painting & sports Doctors to spend more time with patients Environment in need of improvement especially bedrooms, no privacy even to use toilet. Continuously being disturbed as patients listen to music Everything is fine, except that food is a bit scarce Feels abandoned by doctor Feels that psychiatrist is not giving her the required care and wishes to change him; suggested that a wash hand basin be put in room, extension of shower times from 17:30 to 20:00, to allow TV in bedroom Food lacks variety, not served warm enough, garden in need of refurbishment, designated smoking area Group therapy sessions Happy on ward Has been at MCH for 25 years He wishes to be able to access services in a normal way. Richmond flats should be more comfortable, he prefers sleeping in a dormitory rather than in a home. improve the environment of ward, to be allowed use of mobile phone, more information on rights given to patients, better food Individual approach Lack of activity; 'ma jkunx hawn x'taghmel' Lack of rehabilitation ;lack of activities Low IQ ?reliability of questionnaire Make Concerta available on the Govt Formulary More activities; especially outings

More H2O stations

139

More OT, gym & relaxation activities Night staff not so responsive to patient's needs. Suggested selling of produce such as oranges to raise funds No activities such as table soccer, billiards, table tennis. Organisation of more social events such as dancing, allowed to listen to his radio OT, card games, LUDO Patient has no use of upper & lower limbs thus participation in activities is limited; Happy as she is treated as if she's in a hotel Patient satisfied with the service; wishes to sit for O-levels Patient wants to leave; complains about room-mate, states that this has triggered her drinking bout; responsible carer not appointed bec there is noone to appoint, no visits as there is noone to visit her Provision of Wi-Fi Resident severely demented & was unable to answer questionnaire Satisfied with service Satisfied with state of affairs; Small place, overcrowded, more activities, relaxing music, cameras Small gym, very small wards, no cameras in dormitory, noisy carers, one to one nursing Staff is good; there is a verbally aggressive patient Teaching academic subjects, how to budget & basic skills There is nothing on ward which bothers patient To be allowed whenever she feels like as there are some ward policy restrictions on smoking To have an enclosed garden adjacent to ward, he claims he has ADHD but doctors tell him he has Bipolar disorder which he contests To improve personal communication with staff; not much activity on ward Very happy on ward Visiting room very small, with the result of overcrowding and decreased privacy Ward environment is not nice and food is not good; activities are rarely organised Ward refurbishment & better hygiene Ward refurbishment, use of mobile phones, more time dedicated to meals Would like to attend Mass at MCH, gardening within hospital grounds Would like to be followed by the same doctor Would like to go out on a daily basis both within premises of SVPR and also outside Would like to go out on leave during the day Would like to have residences in the community who can house persons with a mental disorder and their children Would like to learn how to use computer; organisation of more activities such as table tennis, cared games & outings

140

APPENDIX 5

Incident reporting in mental health licensed facilities 2015

An analysis of incident reports

Antonella Sammut 1/3/2016

141

1.0 Introduction

1.1 Background An incident may be defined as any happening that is not consistent with the routine operation of a facility or service or the routine care of a service user and which is likely to lead to adverse effects on the consumer. The main aim of reporting incidents in healthcare is to analyse why such happenings occur and try to implement the necessary changes wherever and whenever possible to minimise risk and thus enhance patient safety.

Population-based studies have consistently shown unacceptably high rates of preventable care failures, medical errors and preventable accidents or deaths whilst a patient is being cared for in a healthcare facility. Incident reporting systems provide a vital tool to capture these adverse events and their analysis and investigation could indicate possible underlying causative factors. Determining the cause would trigger the formulation, revision and implementation of protocols, procedures, policies or guidelines to minimise the occurrence of such an accident and consequently improve safety for the service user.

Literature shows that there is gross underreporting of incidents and more so of a near-miss. This may be due to a blame culture and finger-pointing in the direction of the person submitting the report. Healthcare professionals need to be reassured by hospital management that reporting is safe. This may be achieved by fostering a blame-free culture within the organisation and by highlighting the fact that reporting may prevent the occurrence of other similar or more serious episodes. A vital element in this process is that the identity of the reporter is protected.

The Mental Health Act in Article 6 (g) states that among his/her functions the Commissioner for Mental Health is to review all incident reports received from licensed mental health facilities. As from 10th October 2013, incident reporting is a requirement by law. Although, incident reporting prior to this date did take place, the format was different and unfortunately no statistics or analyses of these reports are available.

142

1.2 Aim

The aim of this exercise is to fulfil a requirement by law and increase the number and quality of incident reports. Analyses of all incident reports would lead to the creation of guidelines and protocols or the revision of existing practices.

1.3 Incident reporting and analysis

To facilitate reporting and its analysis, a template was designed to ensure that all relevant information about the incident is supplied. Incidents can be categorised as shown in table 1 below.

Event category Examples

Patient protection events Patient abscondment, suicide/attempted suicide, aggressive behaviour, physical signs of self harm, verbal abuse from a patient or member of staff or verbal abuse directed towards a patient from a member of staff

Care management events Adverse events as a result of administration of drugs either because of allergy to drug or to wrong drug or wrong dose or wrong time, wrong route or wrong rate of administration, or failure to administer the medication or administered to the wrong patient, development of hypoglycaemia, development of a pressure sore, development of haemolytic reaction during the administration of a blood transfusion

Environmental events Patient death or injury:

 related to environmental factors such as electric shock, burn, patient falls, or

 associated with the use of restraints or while in seclusion

Events to be reported to the Abduction of a patient at any age, sexual assault on a patient, injury police authorities of patient or staff member resulting from physical assault within or on hospital grounds

Table 1 Incident Categories

143

Reports are drawn by the completion of the dedicated template and may be submitted by all stakeholders. All reports from Mount Carmel Hospital are channelled through the Customer Care Unit before reaching our office in electronic format. Reports from the Gozo General Hospital are received directly at our office. Analysis of the incidents reported in 2015 is included in this report.

2.0 Results During 2015, fifty six (56) incidents were reported involving a total of 60 patient episodes25. The male to female ration was 1:1. All reports referred to actual incidents.

Figure 1 Number of incidents by month

The month during which the greatest number of incidents was reported was October (Figure 1). Half of the incidents occurred during the last quarter of 2015. Female Ward 1 was the ward which reported the greatest number of incidents (Figure 2).

25 A patient involved in two (2) incidents counts as two (2) patient episodes 144

Figure 2 Number of incidents and number of patients involved by ward

FFU-Female Forensic Unit, FW1-Female Ward 1, FW3A-Female Ward 3A, FW3B- Female Ward 3B,MAW-Mixed Admission Ward, MDDU-Male Dual Diagnosis Unit, MFU-Male Forensic Unit, MSU-Maximum Secure Unit, MW1-Male Ward 1, MW2- Male Ward 2, MW3A- Male Ward3A, MW3B- Male Ward3B, SSW-Short Stay Ward, SU-Secure Unit

Figure 3 Patients involved in incidents by status

60% of all incidents involved patients who were being detained on an involuntary basis (Figure 3).

145

Figure 4 Number of patients involved and number of incidents by category CME=Care Management Events; EE=Environmental Events; ERP=Events to be Reported to Police Authorities; PPE=Patient Protection Events

Nearly all incidents fell into the category of patient protection events (PPE) (Figure 4). Thirty one (60%) patients involved in patient protection events (PPE) had an involuntary status (Table 1).

Incident category Patient status

Involuntary Involuntary Care Involuntary Voluntary Order CCJP

Care Management 2 Events

Environmental Events 2

Events to be Reported 1 to Police Authorities

Patient Protection 31 1 1 18 Events

Table 1 Incident category by patient status

146

Figure 5 Number of incidents, number of patients involved by time period

Figure 6 Number of incidents by category & time period

147

Figure 7 Number of incidents by ward and time period

The day was divided into six periods of four hours each. One third of the incidents occurred between 12:00 and 16:00 hours (Figure 5 & 6). When the number of incidents by ward and time period were assessed no trends were apparent concerning the time period when incidents were more likely to happen on a particular ward (Figure 7).

148

Figure 8 Incidents by age group and gender

The commonest age group of individuals involved in incidents (by episode) is the 15-24 year group, with a female to male ratio of nearly 3:1 in this particular age bracket (Figure 8).

No. of No. of patient patients episodes Mental disorder Organic including symptomatic mental disorders (F00-F09) 5 5

Mental & behavioural disorders due to psychoactive 5 5 substance abuse (F10-F19) Schizophrenia, schizotypal & delusional disorders (F20-F29) 12 9

Mood [affective] disorders (F30-F39] 11 10 Disorders of adult personality & behaviour (F60-F69) 4 3

Mental retardation (F70-F79) 5 2 Behavioural & emotional disorders with onset usually 14 4 occurring in childhood & adolescence (F90-F98) Secondary diagnosis 4 3

Table 2 Diagnosis of patients involved in incidents

The two (2) most common diagnoses of patients involved in incidents fell into the DSM-10 categories of Mood [affective] disorder and Schizophrenia, schizotypal and delusional disorder (Table 2).

149

Patient No. Diagnosis No. of incidents 1 Mental retardation F70-F79 4 2 Schizophrenia, schizotypal & delusional disorders F20-F29 2 3 Disorders of adult personality & behaviour F60-F69 2 4 Behavioural & emotional disorders with onset usually 8 occurring in childhood & adolescence F90-F98 5 Dual diagnosis: Mental retardation, 2 schizophrenia/schizotypal & delusional disordersF70, F20 6 Behavioural & emotional disorders with onset usually 4 occurring in childhood & adolescence F90-F98 7 Schizophrenia, schizotypal & delusional disorders F20-F29 2 8 Mood [affective] disorders F30-F39 2 9 Schizophrenia, schizotypal & delusional disorders F20-F29 2 Total no. of incidents 28

Forty one (41) patients were involved in a total of sixty (60) incidents. Nine (9) patients or 22 % of patients were involved in more than one episode. One (1) patient suffering for Behavioural and emotional disorders was involved in eight (8) incidents and two (2) patients - one with behavioural and emotional disorder and the other with mental retardation - were each involved in four (4) incidents (Table 3). Two thirds of those involved in more than one incident were females.

Profession of reporter No. of reports submitted by profession Doctor 5 Occupational Therapist 1 Security Officer 1 Nurse 50 Nursing Aide 1 Union Directive 1 CCF Officer 1 Table 3 Number of incidents reported by profession of reporter

The vast majority of incidents (83.3%) were reported by nurses and the remainder were reported by other healthcare professionals, a security officer and a prison officer. One (1) incident was not signed due to a union directive (Table 3). For the first time there were four (4) reports submitted

150 from the Short Stay Ward at the Gozo General hospital. No incidents were reported at the Psychiatric Unit at Mater Dei Hospital.

3.0 Learning from incident reporting

The Mental Health Services have set up an Internal Review Board with the aim of reviewing all incident reports, examine the possible root cause of such incidents and to come up with recommendations, protocols and guidelines to minimise the occurrence of such incidents and to enhance patient safety. The board has met three (3) times during 2015; on the 11th February, the 26th August and the 3rd December. The board is chaired by a consultant psychiatrist and the other members include the chief nursing office, a practice nurse and an administrator. At the time or writing this report, the board had reviewed all incidents that occurred up to October 2015.

Analysis of these incidents has triggered the drafting of a new policy entitled ‘Zero Tolerance to Violence’ which is nearing completion. Recommendations of the board are communicated verbally to the charge nurse/deputy of the ward where the patient involved in the incident is receiving care. When the nature of the incident is fairly serious, the responsible specialist is also informed.

4.0 Discussion

The results need to be interpreted with caution since the numbers are small. We are only looking at the numerator when reporting on the number of patients involved in incidents, analysing data by age group, status, diagnosis, etc. The correspondent denominators are not available (a close proxy would be the number of occupied bed days). The reporting culture varies among the different professionals and also between the different wards, thus influencing the amount and type of reporting. In this summary, we rely on the content of the reports received. However, overall the reporting templates were completed satisfactorily.

There were fifty six (56) incidents involving sixty (60) patient episodes. A total of forty one (41) individual patients were involved in incidents with nine (9) patients featuring in more than one (1) incident. A female was the protagonist of eight (8) of the incidents reported, and one (1) male and another female patient were each involved in four (4) incidents. The female involved in eight (8) incidents and the male patient involved in four (4) both fell within the 15-24 year age group thus overinflating the representation of this age group. Both individuals had a diagnosis falling within the DSM-10 classification of ‘Behavioural & emotional disorders with onset usually occurring in childhood & adolescence (F90-F98). ‘

151

There seems to be seasonality in the occurrence of incidents in that half of the incidents occurred in the fourth quartile of the year. The ward with the greatest number of incidents was Female Ward 1 (FW1), however it must be pointed out that the patient involved in the highest number of incidents mentioned above was on this ward. Most patients involved in incidents have an involuntary status. An overwhelming 93% of incidents reported fell within the Patient Protection Events (PPE) category. One has to question, whether there is selective reporting by staff and whether this is related to fear of possible repercussions if reports reflecting shortcomings by members of staff are submitted. Most of the reported incidents occur between noon and four o’clock in the afternoon - is this because patients tend to be idle during this time or could it be that supervision is lax at this time? Since the number of incidents on each ward is very small, it was difficult to see if there was a specific time in any one ward when incidents tended to occur. Reporting is still mostly the remit of nurses and the reporting system is probably missing the contribution of other healthcare professionals.

4.1 Comparison to incident reporting in 2014

When comparing these findings with those of 2014, one notices a drop in reporting, 74 versus 60 patient episodes reported. On a positive note, reports have for the first time been submitted by the Gozo General Hospital and from persons who work in a mental health licensed facility but are not health care professionals. In 2015, there is less variation in the incident categories reported and once again no near misses have been reported. Unfortunately for the second year, no reports have been submitted by patients or their responsible carers.

5.0 The way forward

The Internal Review Board plays a pivotal role in examining these reports and in proposing a review of protocols and practices which would lead to safer care. Most benefits would be reaped if the board convenes on a regular basis and issues timely guidelines. It is important that these guidelines are communicated through reliable and efficient channels to all staff at Mental Health facilities. Every effort is to be done to ensure that staff is consulted prior to the introduction of new policies or protocols.

Monitoring of these revised or new practices should be done by management. Management should continue to encourage reporting by staff and should show a tangible commitment towards blame free reporting.

152

The type of incidents reported and the relatively small numbers reported could mean that reporting is perceived to be a futile and burdensome exercise by a sizeable number of healthcare professionals. By giving timely feedback to staff on action taken as a result of incident reporting would make staff realise that their efforts are being rewarded through concrete action for the benefit of the patient and also to staff themselves. Incidents may indicate training requirements by staff. Training of staff would improve their skills to deal with difficult situations on the ward thus minimising disruption of ward operations.

Empowerment of patients and their responsible carers is greatly lacking. This is reflected in the fact that these two important players in the care process did not feel the need to report or were actually unaware of their right to do so. Progress has been registered in this area as representatives from the Office of the Commissioner and Customer Care department are convening meetings with patients in order to make them aware of their rights, including their right to report incidents and the channels through which this can be done. To facilitate reporting by patients and their responsible carers, a simpler form is being piloted and it will be available on all wards and at the customer care unit.

Reporting systems provide an invaluable opportunity to reassess risks posed by the care environment. Analysis leads to the formulation of new practices that minimise these risks thus improving the safety of the care environment, provide the patient with a positive care experience and an early return to the community. However, instilling the culture of change in both mindset and practice is fraught with challenges which need continued commitment and goodwill from all the stakeholders. Improving the skills of healthcare professionals would contribute to better patient interventions and outcomes through improved patient safety and quality of care.

153

154

APPENDIX 6

LAUNCH OF THE MALTA HEALTH LITERACY SURVEY REPORT MALTA HLS 2014

Vassalli Hall MCC, VALLETTA

11th June 2015

155

LAUNCH OF THE HEALTH LITERACY SURVEY (HLS) MALTA 2014

VASSALLI HALL, MEDITERRANEAN CONFERENCE CENTRE

11th June 2015

1. HEALTH LITERACY SURVEY MALTA 2014 LAUNCH – INTRODUCTORY REMARKS

54.2% of the Maltese adult population has a ‘sufficient’ or ‘excellent’ level of health literacy whilst 45.8% have a ‘problematic’ or ‘inadequate’ level of health literacy. This resulted from the Health Literacy Survey Malta conducted during July 2014. The study was carried out by the Office of the Commissioner for Mental Health in partnership with the National Statistics Office in an effort to measure the health literacy level of the Maltese population and explore ways on how health literacy can be further advanced in the future.

National results compare quite well with the findings of the European Health Literacy Survey (EU HLS) carried out in eight Member States with a mean European General Health Literacy Index of 33.8 as against 34.0 for Malta.

Persons with a tertiary level of education were found to be more health literate than all the other educational attainment subgroups of the population. Individuals who considered their health to be ‘very good’ had better health literacy than the rest of the population. In addition, those persons who found no problems in paying for medication if necessary or who could afford to pay for doctor visits, tended to have better health literacy levels.

This study defined as very vulnerable or vulnerable, those population groups having more than 50% of individuals with inadequate or problematic levels of health literacy. At a national level, the very vulnerable or vulnerable groups included those perceiving their health as bad; persons with more than one long term illness; those attributing to themselves a very low social status; residents of Gozo and persons aged 76 years and over.

Survey participants expressed difficulty or did not know how to find information on common mental health problems, how to use media information to protect themselves from illness and how to judge the credibility of health information from the media. On the other hand it was overwhelmingly easy for participants to understand and follow professional instructions and instructions on medicines, understand health warnings and health screenings, and judge behaviour related to health. These responses confirm the success of past efforts within our health system but also indicate that further action is required in mental health and in citizen empowerment on health decisions and choices based on reliable information from the media and from personal encounters with trained professionals.

Health literacy encompasses a wide spectrum of skills and abilities including but not limited to communication, listening, analysis, comprehension, speaking and decision-making skills. Health literacy is a critical investment if we want to move towards health equity and patient centred health care. The impact of limited health literacy disproportionately affects lower socio-economic and minority groups within society. It affects people’s ability to search for and use health information, adopt healthy behaviours and act on important public health alerts.

156

The study of health literacy has recently emerged from the margins to the mainstream within European and International health agendas. It is being increasingly felt that having a thorough knowledge of the health literacy levels of the population, can assist in devising better and more focused policies and strategies that amongst others combat poverty and social exclusion whilst bringing to the forefront the needs of the most vulnerable groups.

People with poor health literacy skills are likely to exhibit adverse health outcomes. They are less likely to engage in preventive practices and to identify disease in its early stages. They are also less able to access and use health services properly. Literature shows that individuals with low health literacy levels can use an inefficient mix of health services. They are more likely to be admitted to hospital through accident and emergency services. Also, such individuals are more likely to present to their GP’s at a much later stage of illness and therefore have delayed diagnosis with increased morbidity. Besides impacting at individual level, these actions have an economic impact as well.

Keeping the EU HLS Study as a reference point and adopting the tools of this same survey, the Office of the Commissioner for Mental Health, in its endeavour to protect and promote the rights of the most vulnerable groups within society invested in this research to understand the health literacy level of among vulnerable persons against the level of the general Maltese population. The findings from this survey strongly support the mission of this Office to advocate for better mental health in Maltese society. Health literacy gaps need to be identified and addressed at the patient-professional interface because health literacy is the duty of each professional and the right of every citizen. The results of this study should mark the beginning of a new process whereby the concept and measurement of health literacy becomes integrated in policy making and daily professional practice. This will ensure that public health advice is accessed, understood, appraised and applied by the individual and by the health system .

2. REPORT PRESENTATION – SLIDES

Malta Health Literacy Survey 2014 The right of every person to maintain and improve the quality of life throughout the life-course

157

The Tool - HLS-EU concept in Find practice (the HLS-EU-Q16 matrix)

Finding Understand Judge Apply Health information information information information Total Health Disease Literacy relevant to relevant to relevant to relevant to statements Promotion Prevention health (FHI) health (UHI) health (JHI) health (AHI) Health Apply Understand Health Care Literacy 1, 2 3, 4 5 6, 7 7

Disease 8 9, 10 11 12 5 Health Prevention Care The Health comprehensive Promotion 13 14, 15 16 - 4

HLS-EU definition Total Judge 4 6 3 3 16 of Health Literacy statements

Survey Methodology Findings • Conducted in July 2014 by the National Statistics Office. • A stratified random sample of persons aged 18 years and over and living in private households, stratified by district, age group (18-32, 33-48, 49- 64 and 65+) and gender. • Quotas were applied on the strata in order to obtain a fully representative net sample of 1,500 persons. • Information from 1,514 completed responses was gathered using the validated and standardised HLS-EU-Q16 questionnaire through the use of Computer Assisted Telephone Interviewing (CATI).

Percentage Distribution of Survey Responses (n=1514)

find info on treating illnesses 24 57 16 1 3

find info to get professional help 26 61 12 01

understand doctor info 25 62 12 01

understand instructions on medicine 28 64 7 1

judge need of a second opinion 16 54 25 2 3

use professional info for decisions 29 60 9 02

follow professional instructions 32 63 4 01

find info mental health problems 10 44 31 2 13

understand health warnings 40 52 6 11

understand health screenings 34 54 10 11

judge reliability media info 17 49 28 2 5

using media info to protect yourself 14 48 31 2 5

find activities for mental well-being 20 51 21 2 6

understand advice of family/friends 19 52 25 2 2

understand media information 12 59 24 1 4

judge behaviour related to health 30 57 11 11

0 10 20 30 40 50 60 70 80 90 100 Very Easy Fairly Easy Fairly Difficult Very Difficult Don't Know

Easy to….. Don’t know or difficult to….. • Understand (87%)and follow (94.6%) • Find information on common mental professional instructions health problems (45.7%) • Understand health warnings (92.5%) • Use media information to protect • Understand instructions on medicines oneself from illness (38%) (92.4%) • Judge the reliability of health • Understand health screenings (88.3%) information from the media (35%) • Judge behaviour related to health (87%) • Judge need of second opinion (31.5%)

HEALTH CARE DISEASE PREVENTION FIND INFORMATION UNDERSTAND INFORMATION find information on 1 find information on treatments of 80.5% 19.5% understand what your doctor 8 find information on how 54.3% 45.7% 1 treatments of illnesses 3 illnesses that concern you to manage mental health tells you 87.0% 13.0% 2 find out where to get professional 86.8% 13.2% that concern you 80.5% 19.5% problems like stress and find out where to get understand your doctor's or help when you are ill 4 depression 2 professional help when pharmacist's instructions on how 3 understand what your doctor tells 87.0% 13.0% 9 understand health 92.5% 7.5% you are ill 86.8% 13.2% to take a prescribed medicine 92.4% 7.8% you warnings about 4 understand your doctor's or 92.4% 7.8% find information on how understand health warnings behaviour such as to manage mental health about behaviour such as pharmacist's instructions on how to smoking, low physical 8 9 take a prescribed medicine problems like stress and smoking, low physical activity activity and drinking too depression 54.3% 45.7% and drinking too much 92.5% 7.5% 5 judge when you may need to get a 69.5% 30.5% much find out about activities understand why you need health second opinion from another doctor 10 10 understand why you 88.3% 11.7% 13 that are good for your 6 use information the doctor gives you 88.3% 11.7% screenings 88.3% 11.7% need health screenings mental well-being 70.6% 29.5% understand advice on health to make decisions about your illness 11 judge if the information 65.0% 35.0% 14 7 follow instructions from your doctor 94.6% 5.3% on health risks in the JUDGE INFORMATION from family members or friends 70.4% 29.7% or pharmacist understand information in the media is reliable 15 12 decide how you can 62.0% 38.0% judge when you may media on how to get healthier 70.8% 29.2% protect yourself from 5 need to get a second HEALTH PROMOTION illness based on opinion from another USE INFORMATION information in the media doctor 69.5% 30.5% 13 find out about activities that are 70.6% 29.5% use information the doctor good for your mental well-being 6 gives you to make decisions judge if the information 14 understand advice on health from 70.4% 29.7% 11 about your illness 88.3% 11.7% family members or friends on health risks in the >80% EASY/FAIRLY EASY media is reliable 65.0% 35.0% 15 understand information in the 70.8% 29.2% 7 follow instructions from your media on how to get healthier doctor or pharmacist 94.6% 5.3% 60-80% EASY/FAIRLY EASY judge which everyday 16 judge which everyday behaviour is 87.0% 12.9% 16 decide how you can protect behaviour is related to related to your health 12 yourself from illness based on <60% EASY/FAIRLY EASY your health 87.0% 12.9% information in the media 62.0% 38.0%

158

Find From Likert Scale to Literacy Index

Each statement in the national questionnaire was given a numeric value: – ‘very difficult’ as having a numeric value of ‘1’ and ‘very easy’ as having a numeric value of ‘4’. Health Disease – ‘Don’t know’ were not given any value in order not to bias results. Promotion Prevention For each respondent, the average value of all statements was worked out and then converted to a metric score in order to obtain the relevant Health Health Literacy index. The following formula was applied: Apply Understand Literacy Literacy Index = (Mean -1) * (50/3)

Health Where: Care • Mean…..is the mean of all participating items for each Individual • 1 …………is the minimal possible value of the mean (leads to a minimum value of the index of 0) • 3 ………..is the range of the mean Judge • 50…….is the chosen maximum value of the new metric.

Classification of any General Health Literacy Index Health Literacy Index Mean for Malta (0 minimum; 50 maximum) Malta 34.01 Level Range Excellent 42-50 Male 34.06 Sufficient 33-41.99 Female 33.94 Problematic 25-32.99 Inadequate 0-24.99 Malta has a SUFFICIENT level of Source: HLS-EU Consortium General Health Literacy

Comparative Distribution of Health Distribution of General Health Literacy for Malta and HLS-EU* Literacy Indices Malta & HLS-EU* % Distribution % Distribution Level General Disease Health MT (n=1514) (HLS-EU*) Healthcare Mean Health Prevention promotion Excellent Index 9.2 16.5 Index Index Index (42-50) Sufficient Malta 34.0 34.8 31.5 31.7 45.0 36.0 (33-41.99) Problematic HLS-EU* 33.8 34.7 34.2 32.5 42.5 35.2 (25-32.99) (45.8%) (47.6%) Inadequate NL 37.1 38 37.7 35.7 3.3 12.4 (0-24.99)

*HLS-EU was carried out in Austria, Bulgaria, Germany (NR Westphalia), Greece, Ireland, Netherlands, Poland, Spain *HLS-EU was carried out in Austria, Bulgaria, Germany (NR Westphalia), Greece, Ireland, Netherlands, Poland, Spain

Percentage Distribution of Literacy for Health Care, Disease Prevention and Health Promotion Levels of Inadequate Problematic Sufficient Excellent

10.7% 6.8% Health Promotion Literacy 19.4% and 40.3% 49.1% Disease Prevention Literacy 46.3% are not as good as levels relating 29.0% to 33.1% 28.3% Health Care Literacy 20.0% 6.0% 11.1% Health Care Disease Prevention Health Promotion

Percentage levels for Health Care Literacy Percentage levels for Disease Prevention Literacy

Excellent EU Excellent EU

Excellent Malta Excellent Malta

Sufficient EU Sufficient EU

Sufficient Malta Sufficient Malta

Probelmatic EU Probelmatic EU

Problematic Malta Problematic Malta

Inadequate EU Inadequate EU

Inadequate Malta Inadequate Malta

0 10 20 30 40 50 0 5 10 15 20 25 30 35 40 45 Percent % Percent %

159

Percentage levels for Health Promotion Literacy

Excellent EU

Excellent Malta

Sufficient EU

Sufficient Malta

Probelmatic EU

Problematic Malta

Inadequate EU

Inadequate Malta 45.8% of the Maltese Population have 0 10 20 30 40 50 60 Percent % problematic or inadequate Health Literacy

Health Literacy Level and Social Determinants No statistically significant difference was observed for gender, marital status, types of households or persons residing in different districts

Social determinants found to influence on Health Literacy levels include: Vulnerable Groups (1) Bad self-perceived health Education • 61.6% of persons with bad self-perceived health have a limited level of health literacy

Low social status Health Financial Age • 60.6% of persons with low self-declared social status Literacy Status have a limited level of health literacy

More than one long term illness • 56.3% of persons with more than one long term Social Status illness have a limited level of health literacy

Net Household Income and Mean General Vulnerable Groups (2) Health Literacy level Gozo 38 37 • 56.1% of persons residing in Gozo have a limited level of health literacy 36

35 76+ years

34 Mean GHL Mean • 54.4% of persons over 76 years of age have a limited 33 Mean HL level level of health literacy 32

Low Education level 31 Less than €800-under €1850-under €2400-under €2950-under €3600 and • 48.9% of persons with Pre-primary and Primary Levels €800 €1850 €2400 €2950 €3600 over of Education have a limited health literacy Net Household Income

Health Behaviour as a predictor of Body Mass Index and Mean General Health Literacy level Health Literacy Levels 38

M 36 e a 35 n 34

G 33 General HL H Mean level L 32 31 Underweight Normal Overweight Obese Unknown

Body Mass Index

160

Long Term Illnesses and Mean General Health Distribution of Self Assessed Health by Mean Literacy level General Health Literacy level 38 38 37 M 37 e a 36 36 n

35 35 Mean GHL Mean G 34 34 H Mean HL level 33 L 33 General HL 32 32 Mean level 31 31 Very Good Good Fair Bad Very Bad No illness One illness More than One Illness Self Assessed Health Long Term Illnesses

Body Mass Index and the Health Literacy Levels and Service Use presence of Long term Illnesses are inversely correlated with Health Literacy Self-assessed Health seems to be the best proxy indicator of Health Literacy Level

Emergency HL level by frequency of emergency service use Service Use Persons who made use of other 38 health professional services i.e. Persons with low 37 36 allied healthcare professionals, HL levels tend to 35 be admitted to 34 were significantly more health accident and MeanHL 33 literate than the rest of the other emergency more 32 31 subgroups for all dimensions of No use of 1 to 2 times 3 or more times often. emergency services Health Literacy. This increases Emergency Service Use costs!

Conclusions (1) Conclusions (2) • Malta has a SUFFICIENT level of • Limited Health Literacy is a Health Literacy with a Mean problem of nearly one in every General Health Literacy of 34.0 two Maltese persons • This is equivalent to the Mean • Levels of Disease Prevention General Health Literacy in Europe Literacy and Health Promotion but is considerably less than of Literacy are not as good as Health the best i.e. the Netherlands Care Literacy levels

Conclusions (3) Conclusions (4) • Respondents had difficulty or did • Persons at risk of limited Health not know how to: Literacy include: • find information on common mental –Bad self-perceived health health problems –Low self-assessed social status • use media information to protect –More than one long-term illness themselves from illness –Gozo residents • judge the credibility of health –Age 76+ years information from the media –Pre-primary or primary education

161

Conclusions (5) Conclusions (6) • Body Mass Index and the presence • Health Literacy is influencing: of Long term Illnesses are – How persons behave inversely correlated with Health – How persons participate Literacy – How persons use health services • Level of Self-assessed Health seems to be the best proxy therefore indicator of Health Literacy Level Health Literacy matters

Recommendations (1) Recommendations (2) • Support and advocate for better • Address Health Literacy to: mental health and wellbeing – strengthen empowerment • Analyse deeper and act upon the – improve outcomes interaction between health – reduce inequalities messages and media messages – save costs from a citizen information – improve sustainability perspective Health Literacy - a strong policy tool

Recommendations (3) • Identify and address Health Literacy gaps at the professional – patient interface because Health Literacy is THANK YOU the duty of every professional & the right of every citizen

3. QUESTIONS & COMMENTS FROM PARTICIPANTS following presentation of findings by the Commissioner for Mental Health: i. Dr Richard Zammit, Superintendent of Public Health commented upon the slide showing emergency attendance. He stated that this could perhaps be explained by the fact that persons with a higher level of health literacy would go to the private sector. ii. Dr Miriam Dalmas, Consultant Public Health Medicine, Office of the Chief Medical Officer, commented about the unknown response rate. Since the questionnaire methodology sought to obtain a number of valid responses till the sample size was met, this could mean that the health literacy levels measured by this methodology would in fact be over-estimated and that the problem of Health Literacy on a population basis could be even bigger. She commented that it would be interesting to know the profile of non-responders. She suggested the possibility of doing a study on persons who fail to uptake national screening programmes and study whether their health literacy was different to that of the population level determined in this survey. iii. Mr Joseph Gerada from the Health Promotion Department commented that the questionnaire was abridged and he argued that this could have given a different picture to one that could have been obtained using the full version and therefore the comparison with the other EU countries participating in the HLS-EU may not be completely valid. 162 iv. Ms Joslyn Magro Cuschieri, Manager Labour Market, National Statistics Office, explained the methodology used i.e. the quota sampling methodology divided by sex, age and district, and the computer assisted telephone interview (CATI). v. Dr Roberto Debono, Resident Specialist in Public Health Medicine, stated that (1) we need to see more intervention of health promotion and disease prevention at primary health care level; (2) the findings of the Malta Survey clearly identified a section of the population who is socially disadvantaged (low education, low self-perceived health, aged >75 years, etc). He maintained that the Health Sector is only one agent in the whole process. This should be a total government social sector approach. vi. Dr Charmaine Gauci, Director, Health Promotion and Disease Prevention, said that she agreed with the above intervention. She stated that as public health doctors, we should be catalysts for change to tackle socioeconomic determinants of health. She stated that where government has invested, health gains are being evidenced. With respect to mental health, she stated that the general public is crying out and GPs don’t know where to refer. She inferred that to start reaping benefits, there needs to be adequate investment of funds in this area. vii. The Honourable Ms Claudette Buttigieg, Shadow Minister for Health, MP, stated that she was sad that she was the only politician present for this Launch, and to hear that there has been a general lack of funds in the area of mental health promotion. She said that as a politician she was prepared to listen and take the necessary action. She referred to the case of obesity where her party listened and in fact pushed a private member bill. She inferred she would be prepared to do the same. On another note she said that as a person who spent a large part of her time in the media sector, she was very concerned to hear the findings in relation to the media. She said that we need to take action in this area. She said that we need to be bold, to speak up, and to invest in a patient-centred system with investment in primary health care and in the community, which would definitely eventually result in a decrease of costs. viii. Ms Daniela Calleja Bitar, from Richmond Foundation, said that this Survey has shown that there is a public cry for knowledge on mental health. She appealed to the authorities and said that they have a duty to take this cry up. She particularly emphasised the need for mental health education in young children.

4. PANEL DISCUSSION: i. Prof David Mamo, Geriatric Psychiatrist, adopted a rather reflective and controversial approach to the way we deliver health care. He expressed his doubts about using self-reported methodologies because he said that we tend to overestimate, and that we tend to be biased towards optimism. Whilst this could be a good thing in itself, he argued that optimism is faulty if applied to Policy. With regards to disease prevention and health promotion, the locus of control decreases. The more you know, the more you find out how much you do not know.

He stated that 20% of children do not complete secondary education. So he argued that data is probably under-representative.

Older people are very educable. However informed consent takes up a lot of time and needs repetition. Do we give it to them? They keep on coming to see us. But do we realise that the fact

163 that they keep on coming means that there is something wrong with them which we may not be addressing? How much time do we actually give to the doctor-patient encounter? – It is estimated that 80% of specialist trainee time is spent in non-patient time. He stressed that this is a pity because the doctor-patient encounter is the biggest education event opportunity. The Launch has shown us the vulnerable groups – the elderly, the more chronically ill, the poorer. Hence the importance of one-to-one health promotion interventions needs to be emphasised and put into practice.

Comments & feedback from participants:

Dr Lina Janulova, Acting Medical Administrator, Mater Dei Hospital, stated that psychiatry acts differently in MDH, where in practice the nurse is a one-stop-shop because she/he does not know to whom to refer. ii. Dr Noellie Brockdorff, Dean of Faculty of Media and Knowledge Sciences, a specialist in Cognitive Sciences, then delivered a lively and challenging presentation

From beliefs to behaviour Health Literacy Survey Malta June 2015 What I’m about to tell you is gonna change your life forever. Are you really sure you want to know it? Reflections on links between Beliefs and Behaviour Dr Noellie Brockdorff Department of Cognitive Science University of Malta

The relationship between Health Literacy Indices is strongest for: 87.0% - 92.4% find it 83.3% - 94.6% find it very/fairly easy to very/fairly easy to apply

understand information information given by care

Understanding Applying/Using Health given by their doctor or their doctor or health information (UHI) health information (AHI) pharmacist pharmacist BUT: Only 62.0% find it 88.3% - 92.5% find it very/fairly easy to very/fairly easy to take decisions how to

understand health protect themselves Disease

prevention warnings and the need from illness based on for health screening information in the media

From beliefs to Information from behaviour the media & behaviour

Attitudes Question 15: “How easy would you say it is to understand information in the media on how to get healthier?” Subjective Intention Behaviour Very/Fairly Easy= 71% Very/Fairly Difficult=25% norms

Perceived Question 12: “How easy would you say it is to decide

behaviour how you can protect yourself from illness based on Beliefs (Knowledge) Beliefs control information in the media?” Very/Fairly Easy= 62% Very/Fairly Difficult=33% Adapted from Ajzen (1991)

164

Information from Implications the media & behaviour • Public health information websites should be • Which specific information search engine optimized (especially Google). sources are sought (e.g. health magazines, websites endorsed by health specialists, less • Officially endorsed disease prevention specialised web pages)? communications in the media: • How difficult is it to find reliable information • need to be easier to identify sources (e.g. via Google searches)? • should instil confidence in their reliability • Do public and private information sources compete or complement each other?

Comments & feedback from participants:

Dr Charmaine Gauci, Director, Health Promotion and Disease Prevention, commented on the conflicting messages on health delivered on the media. She spoke about a recent project that her department had done which involved the analysis of all adverts in relation to positive or negative health promotion messages on 3 main local TV channels. The main findings were that: (1) Adverts promoting staple foods are very minimal and decrease in frequency as the day progresses; (2) adverts promoting high sugar/high fat food or drinks increase in frequency from 7pm onwards. She concluded that it was very difficult to combat these conflicting messages, as there is a gross difference between the health promotion budget and the media budget.

The Honourable Ms Claudette Buttigieg, Shadow Minister for Health, MP, intervened by stating that we need to (1) Empower not protect; and (2) Empower people to make the right choices.

Dr Noellie Brockdorff agreed with this intervention. However she reminded the audience that children and adolescents today do not see television any more. On the other hand they see a lot of YouTube and what she referred to as the “online jungle”. Her message was that we need to empower them through health literacy so that they could navigate their way through.

Dr John Cachia, Commissioner for Mental Health, commented that we need a much deeper reflection on this topic which is crucial and critical. iii. Mr Wilfred Kenely, Chief Executive Officer, Research, Innovation and Development Trust, University of Malta, spoke from an intelligent user’s point of view. The three main thrusts of his intervention were about (1) Health as a competitor for the media on the same platform as the multimillion advertising industry; (2) Advertising should be regulated to some extent but it is important to be guided in this by going to where the people are; and (3) Health care professionals must be more educated in Communications.

Comments & feedback from participants:

Dr Joan Camilleri, Clinical Psychologist and Psychotherapist & Co-ordinator of Psychology Services, asked whether people who are listening to health messages are ready to learn. She stressed that messages have to be delivered at appropriate times. She expressed concern that the way we give our health messages to people may lead people to believe that doctors can treat any illness. She was also worried about conflicting messages which result in conflicting behaviour. As an example she said that 50% of women in Malta stop breast feeding early.

165

5. GENERAL COMMENTS AND FEEDBACK FROM PARTICIPANTS i. Professor Joseph Cacciottolo, Respiratory Physician, praised the Commissioner for undertaking this study. He then reflected about the fact that the survey tackled perceptions. He expressed caution about the difference between perception and actual facts. As an example he mentioned a study he had conducted about 15 years earlier on noncompliance with antihypertensive medication. In this study he looked at what patients had perceived their doctor as having told them. However he expressed his concern that they might have actually misunderstood their doctor in the first place. ii. Dr Natasha Azzopardi Muscat, Consultant Public Health Medicine, also praised the survey and thanked the Commissioner for having taken the initiative. She made the following observations: (1) We need to be present as a public health community on the social media, even on an individual basis if needs be; (2) The relationship between health literacy and self-perceived health is very important. Our training leads us to veer away from self-perceived health and ignore it but it is very important; (3) A recent study provided evidence that low self-perceived health is the strongest indicator for males. iii. Dr Sandra Buttigieg, Consultant Public Health Medicine, said that we need to look for best practices e.g. the Netherlands. She said that we need to ask ourselves how this country i.e. the Netherlands is managing to get high levels of health literacy. Then we ask ourselves whether we could copy such best practice rather than continuing to research the subject. iv. Dr Hugo Agius Muscat, Consultant Public Health Medicine also expressed his praise for the survey. He commented upon the conflict between the health care professional’s contact time against the individual’s motivated time. He also spoke about the e-health literacy of health care professionals. He proposed that we need to (1) tackle health care professional e-health literacy; (2) work with empowered patients to find solutions; and (3) find time for them. v. Ms Rodianne Micallef Cann from the Directorate for Nursing, said that from her experience with Community Care she wanted to highlight the importance of communication with patients, especially the elderly. She stressed the need for health care professionals to be clear with their patients, to repeat, ask to see whether they have been understood, and to repeat and continue clarifying with their patients as long as necessary. vi. Ms Tessie Saliba, Practice Nurse at Mount Carmel Hospital, spoke about the importance of giving health information not only to the patient, but also to the carer and the family so that together with the patient they will be empowered and have ownership of the patient’s own care plan. vii. Ms Rebecca Cachia Fearne from Primary Health Care made the following 5 points: (1) Today we are seeing the results of our past health care system; (2) We need to change; (3) We need to change our culture in which there is no ownership; (4) We need to invest in time and skills; (5) Health Care Professionals may sometimes feel inadequate because they may not have the skills and motivation required. viii. Professor David Mamo said that we need to go back to people’s homes and to remember that people think differently to how health care professionals think.

166 ix. Dr Noellie Brockdorff commented on the increasing importance of social media even amongst older patients. She also stressed that carers and family are a major factor. x. Mr Wilfred Kenely urged the audience to get best practices and move forward for interventions to increase health literacy. xi. Dr John Cachia concluded the morning’s session as follows:

The Mental Health Act makes an enormous emphasis on the role of responsible carers and their involvement in the patients’ multidisciplinary care plans. This could be a way how mental health literacy can be improved.

1. The results have implications for the individual health care professional-patient encounter. Each encounter should be used as an opportunity to improve the patient’s health literacy. 2. There is a need to move outwards and back into the community and persons’ homes. 3. Improving e-health literacy is a new challenge but at the same time we must not forget the slow movers. 4. We should look towards best practices in this field, for example Netherland.

6. FOCUS GROUPS

During the launching event, 3 focus groups were set up:  Organizational Change to Improve Health Literacy

 Implications of Health Literacy for Public Health

 Mental Health Literacy

Following a discussion, these focus groups put forward the following recommendations for actions:

Focus Group 1 – Organizational Change to Improve Health Literacy

 Creating an integrated patient pathway of health service information

 First contact persons need to be effective communicators

 Development of e-service to better manage hospital appointments

 Centralisation of certain services to reduce fragmentation

 Education of healthcare professionals on health literacy

 Introduction of health literacy in national curriculum

167

Focus Group 2 – Implications of Health Literacy for Public Health

 One stop shop/ helpline

 Professionals able to gauge level of understanding of patients

 Patient partaking in decisions about his/her healthcare needs

 Change in paternalistic culture

 Further patient representation in health promotion

 Better and more effective health promotion especially through media

Focus Group 3 – Mental Health Literacy

 Campaign to address stigma in mental health and raise awareness

 Institutional reform integrating mental health services within general care

 Mainstreaming mental health in all policies

 Continuity of services and seamless transfer of information of services between general practitioners and specialists

 Mental health first aid in community services

 Further development of community support

7. EVALUATION i. Evaluation Form

Participants were asked to give feedback to assess whether the launching event met their expectations. For this purpose a feedback form assessing the following variables was developed:

 Pre-seminar information and registration  Seminar facilities and accessibility  Catering  Quality of programme  Content of Seminar  Content of seminar pack  Effective Use of time  Seminar meeting participants’ expectations Space was provided wherein participants were free to put down their comments. A copy of the evaluation form is annexed to this report.

168

ii. Results

Participants were given the option to remain anonymous. The pool of attendees was made up of representatives of public health, academic organisations, health services, members of parliament and public organisations. Out of 63 prospective participants, 52 turned up for the event. Only 24 feedback forms were completed (46%). For each of the above mentioned variables, four levels of measurement were identified i.e. Poor, Good, Very Good and Excellent. Findings show that respondents were very satisfied both with the quality of the Programme as well as with the seminar facilities and accessibility. 13 out of 24 respondents rated the quality of the programme as ‘excellent’ while 9 rated them as ‘very good’ and 2 as ‘good’. 12 respondents rated facilities and accessibility as ‘very good’, 2 as ‘good’ and 10 as ‘excellent’.

Similarly, respondents rated the content of the seminar and of the seminar pack very highly.

169

As the chart below indicates, participants thought that this event was useful for enhancing their knowledge since 11 respondents said that it was an excellent use of their time, 12 said that it was very good use of their time and 1 respondent said that it was good use of his/her time.

The ratings for the pre seminar information and registration process and for catering were more distributed than those for the variables described above. As seen in the charts below, 1 respondent rated the pre-conference and registration facilities as ‘poor’ while another did not give a reply. The other responses were distributed across ‘good’, ‘very good’ and ‘excellent’ with a majority of responses in the latter category.

170

Most respondents (9) rated the catering as ‘very good’ while 7 respondents rated it as ‘good’ and another 7 as ‘excellent’. 1 respondent did not reply to the question.

At the end of the form, there were two open ended questions; one enquiring for additional comments and the other for recommendations. Of the 24 respondents, only 8 answered the open ended questions. Overall, respondents praised the initiative undertaken by the Office of the Commissioner and the multi-sectoral approach adopted. Some respondents also expressed their interest in being involved in future tasks on health literacy that might be undertaken by the Office.

JM CACHIA

N BARBARA

M CAMILLERI

171

172

APPENDIX 7

OFFICE OF THE COMMISSIONER FOR MENTAL HEALTH

MINISTRY FOR ENERGY AND HEALTH

Comments and Remarks

CONSULTATION DOCUMENT: Proposal for legislation on organ and tissue donation: A Maltese Government White Paper

18th May 2015

St. Luke’s Square, Gwardamanġa PTA 1010, Malta Email: [email protected] http://commissionermhop.gov.mt Tel: +356 2592 4304 Fax: +356 2592 4399

173

CONSULTATION DOCUMENT:

Proposal for legislation on organ and tissue donation: A Maltese Government White Paper

Comments and Remarks by the Office of the Commissioner for Mental Health

1. Persons with mental disorder as potential organ donors

Are persons with mental disorder currently allowed to be live organ donors? Can they apply for a donor card? Or are they a priori excluded? And if so by whom?

It is stated on pg 17 that to qualify as a donor an individual must first be certified by a doctor that s/he is willing to donate a particular organ to a particular patient. The doctor must also declare that the donor fully understands the nature and consequences of the donation. It is further stated that “The doctor shall not certify any donor who due to mental incompetence cannot understand the nature and consequences of the donation.”

We object to the term “mental incompetence” and propose the use of the term “lack of mental capacity”. However we draw the attention of the authors to the following considerations which emanate from the Mental Health Act:

(1) A person suffering from a mental disorder shall be deemed able and competent to make decisions unless certified by a specialist (ie psychiatrist whose name appears on the Specialist Register for Psychiatry) as lacking mental capacity to do so.

(2) Only a specialist may certify a person suffering from a mental disorder as having mental capacity or lack thereof.

Therefore the current situation of having a doctor certify or refrain from certifying a person with mental disorder as being an eligible live organ donor has to be brought in line with the Mental Health Act.

As a general comment we also hope that in addition to the doctor’s declaration, the individual also makes the declaration himself/herself (informed consent).

It is our belief that persons with mental disorder should be given the same opportunity as all other persons to opt to donate organs/tissues during their lifetime or following their death, given the considerations outlined above. On the other hand we also believe that adequate safeguards will need to be in place so that persons with mental disorder will not be exploited or coerced to donate their organs. (We will expound on such safeguards in later on in the document).

2. Persons with mental disorder as potential recipients of live organ donations

Similar considerations outlined under point 1 above apply for the signatures alluded to on pg 19 of the document when the person with mental disorder is the potential recipient. If the specialist psychiatrist declares that the potential recipient lacks mental capacity to provide the declarations

174 required by LOTAC, then these declarations need to be provided by the responsible carer appointed in accordance with the Mental Health Act.

3. The Organ Transplant Waiting List

Pg 15 of the document states that (1) if the patient on the waiting list happens to be suffering from a condition that could jeopardise his/her wellbeing post operatively, s/he is given a temporary inactive status until the patient’s condition improves and it is safe to perform a transplant; and (2) that allocation of kidneys is at the discretion of the nephrologists and according to patient’s current health condition.

We would like to be reassured that in no way do these statements imply that implicit or explicit value judgements on a person’s mental health status would negatively affect the potential recipient’s status on the waiting list.

As a general comment we would also like to clarify whether if a patient’s whose status on the waiting list was temporarily set as inactive were to be reclassified back on to the active list, as to whether s/he would resume his/her original place on the waiting list or would be placed at the bottom of the list.

4. Organ Trafficking

We support specific legislation to criminalise trafficking in human organs and the illegal removal of human organs from living or deceased donors. We propose that such specific legislation could also be extended to criminalise exploitation or coercion of persons with the intent to lead to a forced or uninformed acceptance of the removal of organs. Increased penalty should be given when victims involved are persons with a mental disorder.

5. Equity

We propose adding mental health status to the list on Page 24.

6. Safeguards in obtaining consent from a person with mental disorder who wants to donate organs or tissues as either a live donor or after death.

We propose that:

(1) Given that a psychiatrist certifies that the person has the mental capacity to do so, the procedure should be the same as that for any other person;

(2) Given that a psychiatrist certifies that the person does not have the mental capacity to do so, no live or cadaveric organ donation should be permissible;

175

(3) In the absence of a declared position prior to the death of a person with mental disorder, the appointed responsible carer (as per Mental Health Act), or relatives, or the legally appointed guardian or curator can give consent to a cadaveric donation.

7. Determination of Death

In practice, Malta has always followed international standards in this regard. The drafting team should seriously consider the inclusion of the determination of death in the proposed transplant legislation.

The determination of death on the basis of the irreversible cessation of all functions of the entire brain including the brain stem is essential because circulation and respiratory functions must be mechanically maintained in order to preserve organs and tissues of the body for transplantation.

This determination should sustain current practice which is based on clinical judgment according to internationally accepted criteria supplemented by a standard diagnostic protocol and procedure.

The determination that brain-death has occurred shall be made by physicians who are in no way immediately involved in the transplantation procedure.

8. Anencephalic children

It should be specifically stated that it is illegal to remove organs for transplantation from anencephalic children. Organ donation of regenerative tissue from live anencephalic infants is not recommended because of serious doubts as to viability of organs. Organ donation from brain dead anencephalic infants is not recommended because of serious doubts as to the possibility of establishing brain-death and of the viability of organs.

The team should refer to extensive material on this issue prepared by the local Bioethics Consultative Committee in 2009 on https://health.gov.mt/en/regcounc/Bioethics- Committee/Documents/15report_on_organ_donation_from_anenephalic_infants_2009.pdf

PROPOSED OPTIONS

The Consultation document basically offers 2 distinct approaches for consideration: (A) The Opt-In and the (B) Opt-out Options. Under each of these options there are two sub-approaches namely (a) a soft option which allows changes to the decision by relatives after the person’s death and (b) the hard option which will remain inviolate.

176

THE POSITION OF THE OFFICE OF THE COMMISSIONER FOR MENTAL HEALTH

ABSTRACT

The consultation document makes reference to 4 positions (Soft / Hard Opt-In and Soft / Hard Opt-Out). With all due respect we believe that in the interest of people with mental health issues in particular, but also as regards the whole population in general, there is another hybrid option which this Office favours. We believe that a mixture of the various systems as will be explained hereunder is safer and respects better the will of every individual. First of all we believe that a Hard Opt-In and Opt-Out position for those who positively manifest their intention should be in place, that is both if a person positively expresses his intention either to be a potential donor or to exclude this possibility in the future then in those instances those wishes should be supreme and no-one should be able to overturn similar such decisions. For all the rest of the population who neither express themselves in favour nor against being potential donors, then their relatives / carers / guardians, etc should be in a position to decide whether they consent to their relative's etc removal of organs. In so far as a strictly Opt-Out system based on the mental capacity of an individual to Opt-out from such a system, this Office is very much concerned that persons with mental health problems would be disadvantaged in expressing their will given that no-one besides a Specialist in Mental Health can declare that a person lacks mental capacity.

DETAILED POSITION

1. We do not recommend the OPT OUT system on its own. We disagree with the concept of presumed consent for the authorisation of a procedure which is not life-saving to the individual concerned or for his or her presumed best interests.

We believe that an OPT OUT system will disadvantage persons with mental disorder because the new Mental Health Act assumes that persons with mental disorder shall be deemed able and competent to make decisions unless certified by a specialist as lacking mental capacity to do so. Hence such a system would (a) require several persons with mental disorder to be so certified during their lifetime just to be exempted, or (b) create undue pressures on these persons to opt out, or (c) open them up to abuse or exploitation after their death.

With respect to the issue of mental capacity, (1) the authors state on page 25 that the system would exclude “adults who do not have the capacity to understand and make a decision about objecting to donation during his/her lifetime”; and (2) on page 31 they present an ambiguous paragraph on mental capacity which we cannot understand.

We would like to know that if the system were to exclude such adults from opting out, how they propose to do so? Will they require all such persons to be declared as lacking the mental capacity to make such a decision during their lifetime? Can someone bring up the issue of lack of mental capacity after death? Who can certify such lack of mental capacity post-humously?

In addition under this system a number of persons may fall into the vulnerability disadvantaged loophole. Young people who may still not have become informed enough, or who consider death to be far away and who die unexpectedly will be disadvantaged in this system.

177

In conclusion we believe that individuals in their lifetime should have a right to legally express their wish of not being donors after their death (OPTING OUT) and that such wish should be respected. However we do not believe that people who do not express such a wish should be assumed that they are willing to become donors after their death.

2. We agree with an OPT-IN system with an improvement upon the current system and in combination with a modified OPT-OUT system (see our proposed option under Para 3 below). We agree with required request only in the absence of either a valid documented expressed position of either Opt-in or Opt-out (see Point 6 under Para 3 below). This could be in the form of a Living Will or Advanced Directive or Testament. Potential donors should be encouraged to make their wishes known to family members or their legal representatives during their lifetime.

3. We propose a mixed Opt-In (Expressed consent) Opt-Out (Expressed refusal) System with the following safeguards:

(1) Potential donors should sign a legally binding document expressly stating that they would like to be donors. This expressed consent could be changed or withdrawn whenever the person so wishes. Persons with mental disorder can sign such a document provided that a psychiatrist certifies that they have the mental capacity to do so.

(2) Hence at the time of death, a person is considered to be a legal potential donor if he/she is in possession of a valid document of expressed consent.

(3) The expressed consent process must demonstrate the involvement of a healthcare professional giving all the appropriate information.

(4) When a person dies with a valid expressed consent, the responsible carer (as per Mental Health Act), relatives, legally appointed guardian or curator CANNOT stop the donation. However appropriate and sensitive discussion should take place with these individuals, bearing in mind the increased risk of emotional liability and mental ill-health and the bereavement process that will be occurring at the time.

(5) During their life-time persons can sign a legal document expressly stating that they would like to OPT OUT of organ donation. This document would remain valid until death of the person unless the person substitutes this with a legal document of expressed consent to donation. Obviously for the document to be valid there should be the same considerations given above to mental capacity.

(6) When a person dies with no valid expressed consent but no valid expressed opting out, the responsible carer (as per Mental Health Act), relatives, legally appointed guardian or curator CAN give consent to a cadaveric donation. The verbal attested statements of such a person either way should however be taken into account. In such a situation it is recommended that the final decision be taken by a committee similar to the LOTAC or the LOTAC itself.

(6) When a person dies with a valid expressed opting out, this should be respected. Therefore the responsible carer (as per Mental Health Act), relatives, legally appointed guardian or curator CANNOT give consent to a cadaveric donation.

178

(7) If a person dies with either a valid expressed opting out or opting in, but there is evidence that the patient changed his or her mind (and was mentally capable to take such decision) in the last hours or even minutes of dying, in which there would not have been time to organise legal documentation reflecting the change in decision, the dying patient’s wishes should be respected. Healthcare professionals should therefore always check the person’s status vis-a-vis any expressed opting out or opting in.

(8) Potential donors should be encouraged to make their wishes known to family members or their legal representatives during their lifetime.

(9) With respect to minors under the age of 18, we propose that the law adopts the principle that if the minor is found to have sufficient maturity and understanding to understand the nature of such informed consent, then this proposed OPT-IN and OPT-OUT system could also be offered to minors under the age of 18. However the law needs to propose who will be responsible to declare that the minor has such maturity and understanding. In any case we support extensive education from an early age on the benefits and implications of live and cadaveric organ donation within a holistic educational approach.

The responses to the consultation questions are in Annex.

John M CACHIA Commissioner

Miriam CAMILLERI Consultant in Public Health Medicine

Stephen Zammit Legal Officer

179

ANNEX

Responses by the Office of the Commissioner for Mental Health to set consultation questions:

1. Which system of organ donation do you think is most acceptable to the Maltese people, keeping in mind our culture and moral beliefs?

We propose a mixed Opt-In (Expressed consent) Opt-Out (Expressed refusal) System as described on pages 5-7 of this document.

2. Do you agree that discussions between clinicians and family in the event of an individual’s death will identify and safeguard the decision of the deceased because most probably s/he would have discussed the issue with his/her family?

We believe that appropriate and sensitive discussion should take place with the responsible carer (where the Mental Health Act is applicable), family, legally appointed guardian or curator as required, bearing in mind the increased risk of emotional liability and mental ill-health and the bereavement process that will be occurring at the time. However in the system we are proposing, when a person dies with a valid expressed consent, the responsible carer (where the Mental Health Act is applicable), relatives, legally appointed guardian or curator CANNOT stop the donation. Likewise when a person dies with a valid expressed opting out, this should be respected. When a person dies with no valid expressed consent but no valid expressed opting out, the responsible carer (where the Mental Health Act is applicable), relatives, legally appointed guardian or curator CAN give consent to a cadaveric donation. The verbal attested statements of such a person either way should however be taken into account. In such a situation it is recommended that the final decision be taken by a committee similar to the LOTAC or the LOTAC itself. Finally if a person dies with either a valid expressed opting out or opting in, but there is evidence that the patient changed his or her mind (and was mentally capable to take such decision) in the last hours or even minutes of dying, in which there would not have been time to organise legal documentation reflecting the change in decision, the dying patient’s wishes should be respected. Healthcare professionals should therefore always check the person’s status vis-a-vis any expressed opting out or opting in.

3. Do you agree that the donor card should be given a legal status to safeguard the wishes of the individual after his/her death?

YES.

4. What is the role of the family in safeguarding the wishes of the deceased?

We propose that the family should have been close to the deceased during his/her lifetime and should be aware of his/her wishes and position on the matter. We believe that the family should honour that person’s wishes either way. We believe that when death becomes a high possibility, the subject should be brought up by the relevant clinician/s and discussed with the responsible carer (where the Mental Health Act is applicable), relatives, legally appointed guardian or curator as per system we are proposing described on pages 5-7 of this document.

180

5. This White Paper proposes that ‘individuals must have lived in the Maltese Islands for a sufficient period of time before being included within an opt-out system’ (should an opt-out system be adopted). What factors should be taken into account when determining whether an individual ‘lives in the Maltese Islands’? What should that period of time be?

We do not support the OPT OUT system as a stand-alone system. However we believe that individuals in their lifetime should have a right to legally express their wish of not being donors after their death (OPTING OUT) and that such wish should be respected. In such a scenario it would be irrelevant as to whether the individual is resident in the Maltese Islands or not.

6. Do you agree that an opt-out system for the Maltese Islands should only apply to persons aged 18 years and over? If not, why?

We do not support the OPT OUT system as a stand-alone system. However with respect to minors under the age of 18, we propose that the law adopts the principle that if the minor is found to have sufficient maturity and understanding to understand the nature of such informed consent, then our proposed OPT-IN and OPT-OUT system could also be offered to minors under the age of 18. However the law needs to propose who will be responsible to declare that the minor has such maturity and understanding. In any case we support extensive education from an early age on the benefits and implications of live and cadaveric organ donation within a holistic educational approach.

7. Do you feel confident that every effort is made to give everyone the opportunity to opt- out if s/he wishes to?

NO. We believe that an OPT OUT system will disadvantage persons with mental disorder because the new Mental Health Act assumes that persons with mental disorder shall be deemed able and competent to make decisions unless certified by a specialist as lacking mental capacity to do so. Hence such a system would (a) require several persons with mental disorder to be so certified during their lifetime just to be exempted, or (b) create undue pressures on these persons to opt out, or (c) open them up to abuse or exploitation after their death.

8. Do you think that the Maltese people are altruistic and generous enough to opt for an opt-out system by which everyone is considered a donor unless s/he opts out?

If we adopt an exclusive OPT-OUT system, we would effectively assume or hope that most people would not opt out. Effectively the fact that people would not opt out if such a system were to be enforced may not necessarily result from the fact that they were altruistic or generous. There will be a number of reasons why people would fail to opt out of such a system. These include but are not limited to (1) the efficiency of the system which should ensure that every potentially eligible person has an equal opportunity to make an objection, (2) the sustainability, quality and effectiveness of information campaigns and education, and (3) the level of health literacy and information processing of subgroups and individuals within the whole population. On the other hand we believe that people who voluntarily OPT IN are the ones who would be truly altruistic and generous. Efforts should continue to be directed to this effect.

181

9. Do you think that there is a greater possibility that an individual will decide whether s/he wants to donate his/her organs after his/her demise, if an opt-out principle is introduced in the Maltese islands?

10. Which option do you think would improve the current situation leading to an increase in organs available for transplantation?

We recommend a mixed Opt-In (Expressed consent) Opt-Out (Expressed refusal) System as described on pages 5-7 of this document.

11. Do you have any suggestions on how to improve the current system?

We agree with an OPT-IN system with an improvement upon the current system and in combination with a modified OPT-OUT system (see our proposed option as described on pages 5-7 of this document). We agree with required request only in the absence of either a valid documented expressed position of either Opt-in or Opt-out. This could be in the form of a Living Will or Advanced Directive or Testament. Potential donors should be encouraged to make their wishes known to family members or to their legal representatives during their lifetime.

12. In your opinion, what percentage of the Maltese population would prefer to improve the current system rather than opt for another system?

The absolute majority. The Ministry could opt to commission a survey to find out.

13. Does it bother you to think that when a person dies his/her organs are utilised to save the lives of others?

It remains something of a mystical experience. It is not something to be approached lightly.

14. Do you believe in the principle that it is a waste to bury organs when in actual fact they can be used to give a life to someone needing an organ transplant?

NO. A belief in this principle and the use of such terminology is a utilitarian approach which would render the human body no more than a collection of economic commodities and can give rise to dangerous consequences. Such reasoning also implies that the living human is merely a collection of organs which is not the case. Life and death should be treated with more respect even at a conceptual level. The underlying principle to motivate organ donation should be that it would be an act of human love to donate one’s organs if they could help improve the quality and duration of life of another human being in which both lives hold equal importance.

15. Do you agree with the concept that the relatives of a prospective donor have the right to overturn the deceased wishes?

NO.

182

16. Do you agree that children over the age of 12 should be given the opportunity to register as an organ donor?

YES if the minor is declared to have sufficient maturity and understanding to understand the nature of such informed consent. We propose that in this case our proposed option of mixed Opt-In (Expressed consent) Opt-Out (Expressed refusal) System described on pages 5-7 of this document could also be offered to minors under the age of 18. In any case we support extensive education from an early age on the benefits and implications of live and cadaveric organ donation within a holistic educational approach.

17. Using an appropriate approach, do you agree that children at an early age should be introduced to and educated on the subject of donating organs after death?

YES ABSOLUTELY in appropriate age, religious belief & culturally appropriate terminology and context within a holistic educational approach.

18. Do you agree with financial remuneration to live organ donors to cover expenses incurred due to loss of income and related matters? If in the affirmative should the state remunerate the donor, keeping in mind the big expenses saved to cover renal, dialysis, hospital bed days and medical treatment?

This is a sensitive argument but using the appropriate safeguards, for example the LOTAC or a similar committee, it seems only fair that someone who voluntarily donates an organ should be remunerated to cover extra expenses incurred and that these expenses are met by the state, given that we have a health care system which is free at the point of use, and given that the transplant occurs within the national health service. For any future considerations of having transplants performed in the private sector, such extra expenses incurred would have to be borne by the state.

183

184