New milestone for Joint Statement on mental health

A total of 20 organisations have signed the Joint Statement that emerged from the Mental Health network on the European health Policy Platform.

We believe that this is an important milestone, which we should all celebrate.

EUFAMI Secretary General Aagje Ieven had the occasion to present the statement during the EP Interest Group on Carers on April 11th and again, alongside MHE, during the Public Policy Exchange event on “Mental Health in Europe: Promoting Equal Opportunities and Social Participation” on April 12th.

We understand the next step will be for us to present the statement to EC staff members responsible for mental health across the different DG’s.

We also look forward to bringing all 20 signatories around the table to discuss how we could cooperate to ensure that our recommendations are picked up.

Once again, we sincerely thank MHE and all the signatories for their support and cooperation.

Read more >

EUFAMI welcomes commitments enshrined in EU’s Social Pillar

The European Commission recently made public the EU Social Pillar of Rights in the form of a Recommendation listing 20 key principles which should drive the EU’s social policy agenda in the future. The Social Pillar aims to strengthen the common market by stimulating upward convergence between the social and welfare systems of the Member States.
EUFAMI took part in the consultations leading up to this action and is pleased to see that the concerns of carers continue to be recognized across a number of key areas. We particularly welcome the proposed inclusion of carers’ leave and flexible working arrangements in the “New Start to support work-life balance for parents and carers” – the first legislative initiative taken by the Commission to implement the social pillar of rights.
`
Our Caring4Carers survey showed that caregivers of a loved one experiencing severe mental ill health are predominantly female (80%) and spend, on average, 22 hours a week in caregiving activities – the equivalent of a part-time job. This creates additional hurdles for them to participate in the labour market, as it puts a hard limit on the degree of involvement. Allowing workers to request flexible working arrangements to care for “seriously ill or dependent relatives”, enables them to retain social protection entitlements and to continue to build their pensions, providing more financial security to the caregiver, and in many case also the person being cared for.

Carers who are in a position to combine work and care report a better quality of life and higher self-esteem than those who do not (2015 Eurofound) and as the proposed policies are all targeted to facilitating that combination, EUFAMI very much welcomes every step taken in that direction. That said, caring for a family member is also a valid choice – a positive experience for most with a majority in the C4C survey reporting closer ties with the family member they cared for and saying they had discovered inner strength. Much more could be done to recognize the significant (economic) contribution informal carers contribute to society and to recognize their status.

Moreover, for our constituency, mental health friendly workplaces are key to making the combination of working and caring for someone with mental ill health work and the ambition to make every workplace mental health friendly should guide any future legislation on health and safety at work.

EUFAMI will continue to advocate for these views, while monitoring any future initiatives related to the Social Pillar. Please do not hesitate to contact us with any questions you may have regarding the activities.

Read more >

Welsh associate member Hafal kicks off peer mentoring scheme

Welsh associate member Hafal has officially inaugurated its peer mentoring scheme following the recent opening of its groundbreaking Gellinudd Recovery Centre by Health Minister Vaughan Gething AM.

The new in-patient Centre is staffed by both registered mental health nurses and registered general nurses, and is supported by physiotherapy, psychological therapy, occupational therapy and other services, as well as a psychiatrist. Most importantly, it is staffed by Peer Mentors who have personal experience of mental illness.

Gellinudd’s first cohort of Peer Mentors recently received certificates from Hafal’s Chief Executive Alun Thomas for completing their Peer Mentoring training, which was developed and delivered by trainers Kevin Fisher and Dave Smith.

Alun congratulated the Gellinudd Peer Mentors on their achievement – and welcomed their unique input into what will be an empowering and recovery-focused service.

Read the full story on the Hafal website here

Read more >

Meet Andrew Gordon, living with schizophrenia and a UK Labour party councillor

Confident, highly articulate, and hugely personable, it is hard to imagine that Andrew has been to hell and back.  Diagnosed with bipolar, anxiety disorder and schizophrenia, he has gone from virtual recluse – too afraid to go out in public – to public personality, appearing on live television. So, how is this apparent transformation possible and what lessons can he share with other people with mental ill health and their carers?

Diagnosed with schizophrenia

Andrew, 24, was elected as a local councillor in Basildon in the UK’s south-east, aged just 18, one of the youngest ever to represent a local ward. But his journey was far from easy.  He experienced a first episode psychosis aged 14, which he said was hugely disruptive during a period when most kids his age “are worrying about the latest movie or game”.  During this period, he says he was diagnosed with a series of conditions, including bipolar, to adjustment disorder, to several different psychoses, to anxiety, and even schizophrenia. As part of a series of traumatic symptoms, he says he started hearing voices, and would even “whip myself with a belt” and “punch myself in the head” as he grappled with a complex mix of thoughts and emotions.  He describes one evening when he got picked up by the police after experiencing auditory hallucinations.

“I thought that someone was going to come and kill me.  My voices said that someone was going to come along and kill me.  To me it wasn’t irrational, there was a logic in that.”

He says he does not feel that he was taken seriously and early intervention was practically non-existent. It was only when he quit school that he feels people started to react.  Whilst his classmates were preparing their exams Andrew ended up spending the remainder of his formal education in an in-patient psychiatric unit.  He also experienced a new all-time low.

Andrew’s struggled with his weight whilst taking anti-psychotic medication

“I was pumped full of a medication, which had a lot of side effects.  I turned 20 stone, I started dribbling, I had a twitch in my right leg.  It was really difficult, heavy stuff.”

Only at this point were his needs recognised and he commends the Child and Adolescent Mental Health (CAMHS) services. He says he was treated as a complete individual with highly personal and complex needs that “can’t be boiled down to one nice, little treatment path.”  But the care didn’t last and when he turned 18, it was removed altogether and Andrew faced another serious relapse.

He eventually succeeded in building a coping strategy and embarked on a slow and often agonising road to recovery. He believes some people are simply more pre-disposed to mental ill health, but says his was worsened due to a series of aggravating factors, such as a family break-up, bullying at school and even a complicated relationship with religion.  He half-jokingly refers to his ‘catholic guilt complex’.

Andrew is highly critical of the way mental health services transition from child to adult care and says many people with mental ill health simply fall off the radar.  After a prolonged period in an in-patient psychiatric unit, Andrew spent many months recuperating at home and struggled to go out in public.  His confidence started to return after a period volunteering in the local community for a few hours a week. It was only when a friend suggested that he take up politics that he started to re-evaluate his place in society.  Initially he shrugged off the suggestion, but later reconciled with the idea and started to reinvent himself as a politician, with an emphasis on the importance of community to bring about change.

Getting elected

As he set out on the campaign trail aged just 18, he recalls knocking on someone’s door to lay out his proposal for a better society where working people are better represented.

 

“I said ‘I’m a local lad and I’m really passionate about the town.  I want to make sure that working class people are represented’.  And he looked at me and he said, ‘you’re crazy Andrew’ and I looked at him back and said, ‘that’s quite accurate.’”

Despite having been labelled as ‘the guy with mental health issues” he says colleagues and the public welcomed his openness and he felt a “duty to speak up”.

Over the past few years, he says, he has learned to manage his mental health and even argues that he has better mental health than most of his fellow politicians.

“Much like a doctor could say that if you don’t look after yourself physically, you are going to die, that’s how it is for me mentally.”

On average, people with schizophrenia have their life expectancy cut short by up to 20 years, compared to only 10 years among heavy smokers, according to analysis by Oxford University psychiatrists. High-risk behaviours are common in psychiatric patients, especially drug and alcohol abuse, and they are more likely to die by suicide.

The road to recovery

He does, however, believe in a form of recovery, or rather a kind of managed recovery, which he defines as “being as content as possible with or without symptoms”.

The first step, he says, is finding hope.  This, he explains, is perhaps the most difficult step as there is no one-size fits all solution. Through volunteering and meeting local people, Andrew says he felt he was able to reconnect to the larger community and ultimately build a sense of hope about the future, even if it was – and still is – a work in progress.

The second step, he explains, is regaining control, which is about getting the basics right; a good night sleep, 3 square meals, living in the present, and not taking on too much work. But, he says, it’s also about the freedom of being able to lose control when necessary.

“I found that when I started day-dreaming during the day, just sitting there, it allowed my mind to tick-over, to process things and take me to really interesting places.”

He says that he still tries to reserve a day every week to himself.  “We don’t give those events the time to chew over so I have some structured day-dreaming which is really important for me.”

The third step is opportunity, which he equates to being able to find your passion, “whether it’s music, art, drama, politics, gaming, building, or swimming.”  Andrew says his passion is public speaking and politics, which has served to focus his energy.

During the interview, it becomes clear that he is a gifted and passionate speaker about mental health and politics in general.

He drums home the point that being diagnosed with mental ill health should not necessarily stop you from leading the life you want to lead, whatever that may be.

The role of family

Family can be part of the solution, he says, but it is not necessarily the case.  Despite having a supportive family who, he says, never treated him as an outsider, he was reluctant to share his experiences with them.

“I didn’t really involve my family a lot as I believed I was contagious.  I believed my experiences would pass on to other people. I hid away from family quite a lot, I didn’t allow them in.  That wasn’t because I didn’t like them, it was because I wanted to protect them.” 

Andrew says he tried to keep extended family at arm’s length but did confide in close friends.

His key piece of advice to family members is to try to provide hope, which he believes is the first step to managing a recovery, but he warns against unrealistic expectations from family carers.

“If your son, daughter, husband or wife had a broken arm, you wouldn’t try to deal with the broken arm itself, you’d take them to hospital.”

Mental health policy recommendations

 In terms of policy recommendations, Andrew believes there needs to be a complete overhaul in the way mental health is perceived, at least in the UK.  His view is that there should be a greater focus on “mental health first aid” which is proactive, rather than  reactive, whilst raising awareness.  “We all have a mental health, he says. So we need to be having those conversations overtly.”  The focus, he says, should be on teachers and employers, who should be mandated to tackle the issue, so that people with mental ill health and their carers are not forced to suffer in silence. He also reiterates the importance of openly discussing the complexity of human experience to help young people build resilience at school.

“We should never, ever, ever pathologize human experience but we should teach people how to manage human experiences, as society is different to how it was 20 or 30 years ago.”

He also makes an economic argument, focusing on prevention, which, he suggests, would drastically cut down on policing, needless court proceedings and expensive in-patient costs. He mentions a dramatic drop in productivity when employees do not take care of their mental health.

More generally, he says austerity policies are crippling local services and harming cohesion in local communities. He believes there is a direct link between the scaling back of community provision and acute stages of mental illness.

Ultimately, he says, “investing a couple of pounds in a youth club would save so much money down the line.”

The road ahead

Andrew is currently dividing his time between his role in local politics and studying to be a social worker. He feels optimistic that he can manage his mental health but admits that there are likely to be difficult times ahead.

He commends the role that EUFAMI is playing in collecting and promoting best practises across Europe and recommends building a focus around issues that everyone can agree on, such as better mental health awareness in schools.

Here at EUFAMI, we certainly value the work that Andrew is doing to show that mental ill health does not have to be debilitating or stop you from leading the life you want to lead.

Read more >

Mental Health: Joint Statement

Mental health is everyone’s concern. It is central to all our lives and impacts our well-being, our work, our societies, our families and our economies. We, the undersigned European organisations, are concerned by the mental health of millions of Europeans and we have several proposals about how the services and support they receive can be improved and supported by the European Union.

Read more >

Members in alphabetical order

ARAP – Associazione per la Reforma dell’Assistenza Psichiatrica (Italy)

Ariadne – Verband Ariadne – für die psychische Gesundheit aller (Italy)

BApK – Bundesverband der Angehörigen psychisch Kranker (Germany)

Bedre Psykiatri – Landforeningen Pårørende til Sindslidende(Denmark)

ENCONTRAR+SE – Association to Support People with Severe Mental Illness (Portugal)

SALUD MENTAL ESPANA -Confederación Salud Mental España (Spain)

FamiliarMente – Portuguese Federation of Associations of Families of People with Mental Ilness Experience (Portugal)

FinFami – Omaiset Mielenterveystyön Tukena Keskusliitto Ry (Finland)

HAFAL – for Recovery from Serious Mental Illness (Wales – UK)

HPE – Hilfe für Angehörige Psychisch Erkrankter (Austria)

HUMANA – Združenje Svojcev pri skrbi za Mentalno Zdravje (Slovenia)

KINAPSI – Siblings of People with Mental Health Problems (Greece)

KIPRODIPSA – Advocacy Group for the Mentally Ill (Cyprus)

LPP – Landsforeningen for Pårørende innen Psykisk Helse (Norway)

LSPŽGB – Lietuvos Sutrikusios Psichikos Žmonių Globos Bendrija (Lithuania)

MHA – Mental Health Association (Malta)

MindWise – (N. Ireland)

New Choices (Russia)

OZMA – The National Forum of Families of People with Mental Illness (Israel)

Rethink – Mental Illness (England – UK)

Schizofreniförbundet (Sweden)

Shine – Supporting People Affected by Mental Ill Health (Ireland)

Similes Vl – Federatie van Vlaamse SIMILES kringen v.z.w. (Belgium)

SIND – Landsforeningen SIND (Denmark)

SOPSI Athens – Panhellenic Association of Families for Mental Health (Greece)

Stichting Labyrint~in Perspectief (Netherlands)

SYMPATHEA – Celonárodní Organizace Příbuzných Duševně Nemocných (Czech Republic)

UNAFAM – Union Nationale des Amis et Familles de Malades Mentaux (France)

UNASAM – Unione Nazionale delle Associazione per la Salute Mentale (Italy)

VASK – Vereinigung der Angehörigen von Schizophrenie-/ Psychisch Kranken (Switzerland)

Vereniging Ypsilon (Netherlands) Affiliate member associations

B.P.U. – Bedre Psykiatri Ungdom (Denmark)

EDRA – Services in the Mental Health and Learning Disabilities Sector (Greece)

METIS Europe asbl (Belgium)

OZARA – Nacionalno Združenje za kakovost Življenja (Slovenia)

ŠENT – Slovensko Združenje  za Duševno Zdravje (Slovenia)

Read more >

Members per country

List of member associations per country

Austria
HPE – Hilfe für Angehörige Psychisch Erkrankter

Belgium
METIS Europe asbl
Similes Vl – Federatie van Vlaamse SIMILES kringen v.z.w

Cyprus
KIPRODIPSA – Advocacy Group for the Mentally Ill

Czech Republic
SYMPATHEA – Celonárodní Organizace Příbuzných Duševně Nemocných

Denmark
Bedre Psykiatri – Landforeningen Pårørende til Sindslidende
Bedre Psykiatri Ungdom
SIND – Landsforeningen SIND

Finland
FinFami – Omaiset Mielenterveystyön Tukena Keskusliitto Ry

France
UNAFAM – Union Nationale des Amis et Familles de Malades Mentaux

Germany
BApK – Bundesverband der Angehörigen psychisch Kranker

Greece
EDRA – Services in the Mental Health and Learning Disabilities Sector
KINAPSI – Siblings of People with Mental Problems
SOPSI Athens – Panhellenic Association of Families for Mental Health

Ireland
Shine – Supporting People Affected by Mental Ill Health

Israel
OZMA – The National Forum of Families of People with Mental Illness

Italy
Ariadne – Verband Ariadne – für die psychische Gesundheit aller
ARAP – Associazione per la Reforma dell’Assistenza Psichiatrica
UNASAM – Unione Nazionale delle Associazione per la Salute Mentale

Lithuania
LSPŽGB – Lietuvos Sutrikusios Psichikos Žmonių Globos Bendrija

Malta
MHA – Mental Health Association

Netherlands
Stichting Labyrint~in Perspectief
Vereniging Ypsilon

Norway
LPP – Landsforeningen for Pårørende innen Psykisk Helse

Portugal
ENCONTRAR+SE – Association to Support People with Severe Mental Illness
FamiliarMente – Portuguese Federation Of Associations Of Families Of People With Mental Ilness Experience

Russia
New Choices

Slovenia
HUMANA – Združenje Svojcev pri skrbi za Mentalno Zdravje
OZARA – Nacionalno Združenje za kakovost Življenja
ŠENT – Slovensko Združenje  za Duševno Zdravje

Spain
SALUD MENTAL ESPANA -Confederación Salud Mental España

Sweden
Schizofreniförbundet

Switzerland
VASK – Vereinigung der Angehörigen von Schizophrenie-/ Psychisch Kranken

United Kingdom
HAFAL – for Recovery from Serious Mental Illness (Wales)
MindWise (Northern Ireland)
Rethink – Mental Illness (England)

Read more >

Secretariat

Aagje Ieven, EUFAMI Secretary General

Aagje Ieven took up the position of Secretary General at EUFAMI in January 2016.  She has a background in Health (BA Medicine, Leuven, 1998) and Political Philosophy (MA, Leuven and Nijmegen, 2002), and conducted research in European human rights law at the University of Leuven (2002-2008) and Columbia University (2007). Since 2009 she has worked as a policy analyst and advocate for various EU civil society organizations to improve the rights and wellbeing of children and families. At EUFAMI she oversees the day to day operation of the network and continues her advocacy towards ending institutionalised care, strengthening communities and supporting families.

Contact: secretarygeneral@eufami.org

 

Rita Geerts, Administrator

Responsible for organisation and minutes of Board Meetings, Annual General Meeting and supporting the organisation of Family Congress, other member meetings and events. In charge of EUFAMI member administration and internal communications with the member associations. First point of contact for member associations and external enquiries. Support to external and social media communications and coordination of all administrative aspects of EUFAMI including personnel and office management, organising and updating databases, filing system etc.

 

 

Contact: project.admin.office@eufami.org

 

Paul Nolan, Communications Officer

Paul has a background in journalism and more recently collaborated with our partners at COFACE Families Europe.  He is in charge of running our outreach campaigns and managing our social media platforms.

 

 

 

 

 

 

Contactcommunications@eufami.org

 

 

 

Arndt Münch, trainee

Arndt is doing a policy traineeship at EUFAMI. He is a recent graduate of Maastricht University. He holds a Master’s degree in Public Economics, as well as a Bachelor degree in International Economic Studies, both from Maastricht University. His specialty lies in empirical growth modelling and public policy analysis. His Master thesis investigated the impact of education inequalities on economic growth in Africa, using endogenous growth theory as a basis for the empirical model. His role at EUFAMI focuses on EU policy and communication.

Contacttrainee@eufami.org

 

Viktoria Donicheva, trainee

Viktoria is a student from the Faculty of Health, Medicine and Life sciences at Maastricht University, the Netherlands. She is doing a placement within the organization and has a position of a researcher, involved in several projects, namely the East project – identifying potential new members of the EUFAMI network in Eastern Europe; and M.E.N.S. project – acts as a contact person for partners during the Networking phase of the project. She is also assisting with writing research proposals – particularly focusing on children, violence and abuse, providing scientific literature on the topic. Occasionally she also searches for data on current prevalence of mental disorders and modern mental health interventions that involve families.

Contact: v.viktoria@student.maastrichtuniversity.nl

Read more >

Next Page »