15 November 2014

BBC: The disabled children locked up in cages

 

by Chloe Hadjimatheou

Disabled people in Greece are often stigmatised and can struggle to get the support they need. Some disabled children who live in a state-run home are locked up in cages - staff say they want to improve conditions but money is short.

Nine-year-old Jenny stands and rocks backwards and forwards, staring through the bars of a wooden cage.

When the door is unlocked she jumps down on to the stone floor and wraps her arms tightly around the nurse. But a few minutes later she allows herself to be locked back in again without a fuss.

She is used to her cage. It's been her home since she was two years old.

Jenny, who has been diagnosed with autism, lives in a state-run institution for disabled children in Lechaina, a small town in the south of Greece, along with more than 60 others, many of whom are locked in cells or cages.

Fotis, who is in his twenties and has Down's syndrome, sleeps in a small cell separated from the other residents by ceiling-high wooden bars and a locked gate. His cell is furnished only with a single bed. There are no personal possessions in sight anywhere in the centre.

"Are we going on a trip?" is this wiry young man's hopeful refrain whenever he sees anyone new. But with barely six members of staff caring for more than 65 residents there is rarely an opportunity to leave the centre.

In the small staff room, an array of closed circuit TV screens flicker, permanently tuned into the large wooden boxes that dominate the upstairs rooms.

The poor conditions first came to the attention of the authorities five years ago when a group of European graduates spent several months at the centre as volunteers.

Catarina Neves, a Portuguese psychology graduate was among them.

On the first day there I was completely shocked… I could never have imagined that we would have this situation in a modern European country but I was even more surprised that the staff were behaving like it was normal," she says.

The volunteers wrote up their experiences in a document that they sent to politicians, European Union officials, and every human rights and disability rights organisation they could find. Occasionally they received replies thanking them for their email without any promise of action but mostly they were ignored.

Then in 2010 the volunteers' testimony came to the attention of the Greek ombudsman for the rights of the child who visited the centre and published a damning report in which he highlighted, "the degrading living conditions… the deprivation of care and support provided, the use of sedating medication, children being strapped to their beds, the use of wooden cage-beds for children with learning disabilities, the electronic surveillance, as well as the fact that such practices constitute violations of human rights."

He also referred to the fact that there had been several deaths at the centre due to a lack of supervision. A 15-year-old died in 2006 after choking on an object he had accidentally swallowed. Ten months later when a 16-year-old died, the post-mortem examination revealed his stomach was full of pieces of fabric, thread and bandages.

t was after these incidents that management of the centre decided that the staffing levels made it impossible to protect the children from harm. Their solution was to have the cages custom built for the residents.

However the ombudsman's report concluded that the cages and any practices employing long-term restraints "are clearly illegal and are in direct contradiction with the obligation for respect and protection of the human rights of the residents," and he urged the Greek government to take immediate steps to rectify the situation.

But after almost five years the only changes are superficial.

Some of the wooden bars have been painted and funding was found to turn the day room into a soft-play area - but there is still no-one to engage with the residents, who sit alone in the room on plastic mats rocking and staring at the walls while an assistant watches from the doorway.

There is only one nurse and one assistant per floor responsible for more than 20 residents - there is no permanent doctor at the centre.

When residents need to go to hospital, they are accompanied by one of the nurses which means more than 20 residents are left in the care of just one person.

"On a nightshift I was often left alone with three assistants, who are not even nurses, to care for more than 60 patients. If there were any medical problems with the children there was no one to ask for help except God," says a senior nurse who recently retired from the centre and spoke to the BBC on condition of anonymity.

She says the cages were necessary. "We fought to have those caged beds built to give the children more freedom. Before that the residents were permanently tied by their arms and legs to their beds.

"Anyway, the children are used to them now. They like them."

Local doctor George Gotis who has been volunteering his services at the centre for more than two decades also sees the cages in a positive light.

"I believe this is one of the best institutions for disabled children not only Greece but in Europe," he says.

"Many of these profoundly disabled children have lasted far beyond their average life expectancy and these expensive caged beds, which were built to help protect them from injuring themselves, have played a big role in that."

The new director of the centre Gina Tsoukala, who has not been paid for nearly a year, says she can't quit because she feels she owes it to the residents to stay and fight their cause.

"Obviously we shouldn't have cages here but it is impossible for us to manage without them when we have such low levels of staff."

"Some of the residents have self-destructive tendencies or are quarrelsome and so on the advice of a doctor we have to use these wooden partitions. But the children are still free to communicate and to some degree to interact with each other."

At lunchtime the children who are behind bars are fed inside their cages.

The director says only the very basic needs of the children can be covered by her staff. In one shift a nurse and assistant have to change the nappies of more than 20 residents, hose them down, spoon feed them and medicate them.

"We are doing everything we can but we do not have the resources to give anything else," says Tsoukala.

"More than two thirds of these children have been abandoned by their families and we do not have the time to give them the emotional support we would like, nor to give them the individual care they deserve."

But arguing that the cages are there for the safety of the children is wrong, says Steven Allen, of The Mental Disability Advocacy Center (MDAC) - an international human rights organisation for people with mental disabilities.

"The cages are there to protect the staff not the children," he says. "They are based on a model of care that is about coercion, restriction and making people with disabilities easy to manage, not treating them as human beings with rights.

"Being kept in a cage is seriously detrimental to the psychological health of patients, has no therapeutic value and can actually be physically dangerous. There have been cases [elsewhere] where the bars of cages have fallen on to patients and killed them," he says.

The MDAC says the only other countries which currently use similar caged beds are the Czech Republic and Romania.

The head of the Association for Families and People with Disabilities in Ilia, the local prefecture, Ioannis Papadatos, has his office in a huge state of the art centre designed to cater for people with disabilities.

Complete with swimming pool, physiotherapy and speech therapy facilities, and a large number of flats for semi-independent living, it was built with EU funds. But today it sits empty because the Greek state can't afford to staff it.

Ioannis Papadatos used to be on the board of trustees for the children's centre at Lechaina until last year. He says he battled to make conditions better at the centre - two girls with autism now go to a special school for a few hours a day.

But for many residents he says, "The only time they will really be released is when they die."

This is a subject close to his heart. His first child, 24-year-old Andonis, was born with Down's syndrome.

Andonis has visited the centre with his father and seen people with similar conditions to his own living behind bars. When asked about it he visibly shivers.

"Oh, don't talk about it! It gives me the chills," he says.

Sociable and confident, Andonis is unusual in that he was raised by parents who were proud of him and encouraged him to live as independent a life as possible, in a country where disability is still stigmatised.

Gina Tsoukala says the mothers of some of the residents do not even know of their existence. She believes that in some cases, when disabled children were born, the father and hospital conspired to tell the mother the baby had died.

There are about a dozen centres for disabled children and adults in Greece but getting access to them is difficult and it is unclear what conditions are like inside each of them. The BBC's requests to visit other institutions in Athens and Sidirokastro, in the north of Greece were refused.

But there are plans to improve the institution at Lechaina and other similar homes, says Efi Bekou, the general secretary in charge of welfare at the Ministry of Labour and Social Welfare

"At the moment there are 12 centres for disabled children and adults around Greece but we are opening increasing numbers of homes in the community and hope to eventually close all big institutions."

She says the economic crisis means that the Greek state is bound to rules set by its lenders in the EU and IMF, including a moratorium on hiring new staff - as a result, she says, it would be impossible to employ the number of staff needed at the centre.

But while she says the government is discussing the children's situation she admits, "I can't give you an exact time line for when those children will be transferred out of that institution."

The names of the children in this article have been changed.




 

24 May 2014

Forum for the Psychiatric Reform : European Election Manifesto 2014

 

We are users of mental health services, families and friends, facing a series of problems in our everyday life in Greece. We have formed associations and we cooperate in the Forum for the Psychiatric Reform because the situation in the field is dire and is getting worse day by day. This is not an exaggeration, what we as users and families are experiencing, are daily violations of our basic human rights as citizens of Greece, stigma, social isolation, cut in our benefits and lack of or increase of the prices of our medication. We are also completely excluded from any process of formulating, discussing, deciding and implementing mental health policies and plans. We are at the receiving end of various implementations that are against the effort of psychiatric reform.

We ask you to listen to us and help us protect our right to have a say on what is happening with our lives and families. We used to say “nothing for the users, without the users”, but the sad truth is that this is something that has never happened in Greece. Please do not ignore our plea and help us to be heard, we need you as an ally in this effort since we cannot afford to lose another chance.


LISTEN TO US AND SUPPORT OUR DEMANDS

Our basic human rights are violated. We face abusive behaviour by the police, which is the medium to submit us to a hospital, with no training and in most of the times under inhuman conditions that insult our dignity and human existence. We still have the inhumane privilege to be first in the EU on involuntary psychiatric submissions, and almost 60% of all of these submissions to psychiatric hospitals are involuntary. Promote individualised/personalized treatment/care in a community based system as a therapeutic means. Protect the human rights of people with mental health problems. 

Sectorization of the existing scarce and under threat psychiatric services has never worked, even though there was a related law dating from 1999. The committees most of the times were never active and they did not have users or family members on their compositions. Implement the sectorization of the psychiatric services and promote the active participation of users and their families in the committees.

Currently the psychiatric rehabilitation and deinstitulization is based mainly on the families of the users. The few community based programs are not sufficient, we need more. The huge economic and humanistic crisis that Greece is going thorough has made things even worse, we could say that in some instances we moved backwards and not forward. Family's rights and needs are being fragmented. The lack of social services and infrastructures, forces families to resort to private mental health clinics in order to receive and provide help for their relatives. The financial burden is immense on the already encumbered families. The social cohesion in Greece is in turmoil and the government is pushing users, families and mental health services to their limits, both psychologically and financially. Increase the community based programs, offer free and adequate social and mental health services and infrastructures of good quality, as well as access to adequate and affordable medication. Support the families. Make sure that people with mental health problems and their families have a minimum guaranteed income which covers their needs. Sensitize and include the communities and combat stigma and social exclusion. 

There is a huge threat for the existing chronic patients, people that have lived more than 40 years in the two major psychiatric institutions with the way that the government is violently trying to close them. These two institutions are also the gatekeepers for a huge load of acute psychiatric cases from all over Greece. We all want for these institutions to close, but by transforming the services and having the resources to increase the community based treatments. There is no plan and no answer on what will happen next. Just “sketches on maps”, but we are talking about vulnerable people and not pawns. Don’t close the two major psychiatric institutions before an effective transformation of the services is put in place with adequate resources to increase the community based treatments.

There is a clear threat that the mental health memorandum signed by Greece and EU, will become just an administrative tool for the government to proceed violently to a distorted view of what psychiatric reform, rehabilitation and recovery means. Many of the goals have not been met, no one is evaluating this process, we are excluded by it and the result so far is catastrophic. We are extremely concerned at what will happen after 2015, since every year the budget for mental health services is dangerously low. Monitor the process with external evaluators, not appointed by the Ministry of Health, with an objective evaluation process, so that it is clear whether the goals of the memorandum have been met in actual changes and implementations.

All of the above and many more aspects are the reality that we are facing in Athens. The situation in the county, in the islands, in the small cities or villages is far worse, since the only model that has provided adequate mental health services, the mental health mobile units, are also under threat. Take special care for the people with mental health problems who live out of Athens, in the province, the islands, the small cities and villages.

The delusion of the mental health experts that they have all the answers and hence they can speak on behalf of the users must be abolished. We should be on the centre stage, discussing and forming policies and strategies, we should be able to have a chance to a whole life, not just a life, in order to have the best opportunity for recovery, and that can only be achieved if a whole system is finally developed and implemented based on the actual needs of the people, thus improving their capabilities and autonomy. Promote the real participation of the users and their families in all processes.


THE SITUATION IS CRITICAL WE NEED YOUR SUPPORT!

One cannot mention the words deinstitutionalization and community based psychiatry if one does not support the notion that good quality community mental health services, work and continuing education are one’s nonnegotiable priorities. These are the most important tools for recovery and emancipation. This path begins with personal projects to change the culture of mental illness, and extends to the challenge of productivity and to the possibility of real social and work inclusion. All these cannot be achieved without the unanimous stand and support of Greece’s and Europe’s mental health policy makers and activists, that this is Greece’s last chance for recovery. Since it is not just a national matter, it is an international one, and it is not only a matter of mental health, it is a matter of basic human rights.



Forum for the Psychiatric Reform : syn-skepsi.blogspot.gr
email: synskepsi@gmail.com

  

22 February 2014

Tough austerity measures in Greece leave nearly a million people with no access to healthcare...



Tough austerity measures in Greece leave nearly a million people 
with no access to healthcare, 
leading to soaring infant mortality, HIV infection and suicide


Austerity measures imposed by the Greek government since the economic crisis have inflicted “shocking” harm on the health of the population, leaving nearly a million people without access to healthcare, experts have said.

In a damning report on the impact of spending cuts on the Greek health system, academics found evidence of rising infant mortality rates, soaring levels of HIV infection among drug users, the return of malaria, and a spike in the suicide count.

Greece’s public hospital budget was cut by 25 per cent between 2009 and 2011 and public spending on pharmaceuticals has more than halved, leading to some medicine  becoming unobtainable, experts from Oxford, Cambridge and the London School of Hygiene and Tropical Medicine (LSHTM) said.

Rising unemployment in a country where health insurance is linked to work status has led to an estimated 800,000 people lacking either state welfare or access to health services and in some areas international humanitarian organisations such as Médecins du Monde have stepped in to provide healthcare and medicines to vulnerable people.

The report, which is published today in the medical journal The Lancet, accuses the Greek government and the international community – which demanded swingeing cuts as a condition of bailing out the Greek economy during the debt crisis between 2010 and 2012 – of being “in denial” about the scale of hardship inflicted on the Greek people.

Health employees demonstrate outside the Health Ministry in Athens (Getty Images)

“The cost of austerity is being borne mainly by ordinary Greek citizens, who have been affected by the largest cutbacks to the health sector seen across Europe in modern times,” said senior author Dr David Stuckler, of Oxford University. “We hope this research will help the Greek government mount an urgently needed response to these escalating human crises.”

Greece was forced to make massive cutbacks to meet the terms of twin bailout packages, totalling €240 billion, offered by the European Commission, the European Central Bank and the International Monetary Fund, known as the Troika. Health spending was capped at six per cent of GDP.

Analysis of figures from the EU Statistics on Income and Living Conditions survey revealed a leap in the number of people with unmet health needs, the authors said. The cost of healthcare has been significantly shifted away from the state and towards patients, with new fees for prescriptions introduced and charges for out-patient visits to hospital raised from €3 to €5 .

Government disease prevention schemes have also been rolled back leading to the resurgence and revival of once rare infectious diseases – including malaria, which has returned to Greece for the first time in 40 years.

“There are a whole series of infectious diseases which have been kept at bay over the past 50 or 60 years by strengthened public health efforts,” Martin McKee, professor of European public health at LSHTM and one of the report’s co-authors, told The Independent. “If you lift up your guard, as the Greek example shows, they can very easily exploit those changes.

“The experience of Greece demonstrates the necessity of assessing the health impact of all policies carried out by national governments and by the European Union.”

People stand outside the "Polyklikini", one of the hospitals affected by overhaul of the health sector (Getty Images)

Prevention and treatment programmes for illicit drug users faced major cuts, with a third of street work programmes halted in 2009-10, the first year of austerity. Reductions in the numbers of syringes and condoms distributed to known drug users has led directly to a spike in the rate of HIV infections in this community, the report said – from just 15 in 2009 to 484 in 2012.

Although reliable data on the health impact on the wider population will take several years to emerge, the Greek National School of Public Health reported a 21 per cent rise in stillbirths between 2008 and 2011, which was attributed to reduced access to prenatal services, and infant mortality also rose by 43 per cent between 2008 and 2010.

The suicide rate has gone up from around 400 in 2008 to nearly 500 in 2011.

Alexander Kentikelenis, researcher in sociology at the University of Cambridge and the report’s lead author, said that the Greek welfare state had “failed to protect people at the time they needed support the most.”

“What’s happening to vulnerable groups in Greece is quite shocking,” he told The Independent. “It’s quite straightforward to measure what has happened, it’s much harder to quantify the long-term health implications for the long-term unemployed and uninsured…Leaving health problems to get out of hand ends up costing a state much more in the long run.”

The Greek Ministry of Health and Social Solidarity did not respond to a request for comment.


Case study

The Metropolitan Community Clinic at Helliniko in Athens was founded in December 2011. It is run by volunteer doctors and provides free healthcare to people without medical insurance

Co-founder Christos Sideris told The Independent: “The healthcare situation in Greece is, unfortunately, dramatic. We have helped more than 4,400 patients, with more than 20,300 appointments in 26 months of operation. We look after more than 300 children below the age of three, and have helped 126 cancer patients to receive chemotherapy, in collaboration with a public hospital. This is not done in an official capacity, but by the people working there, every Wednesday after working hours, with donated medicines.

We have three basic rules: we accept no money from anyone, we have no party politics, and we do not advertise anyone for the help they are offering us. We only accept money from our own volunteers – there are 250 of them at the moment. These volunteers do fundraisers and give money to the clinic. The local municipality also helps us. Our medicines are all donated. There are more than 40 community clinics and pharmacies like us across Greece. They cannot solve the problem – we’re only here because there is a need for us to exist. We cannot substitute a public health system and we do not want to.”