Ignored: the mentally ill killed by drugs that are meant to help them

Campaigners plan to use World Mental Health Day to highlight discrimination within the medical profession against some of its most vulnerable patients

By Nina Lakhani
Sunday, 5 October 2008

Daniel Galvin died of a heart attack in August. He was six stone overweight and had high blood pressure; his hair was falling out and he was incapacitated by trembling legs. He was 29. Daniel's family believe his symptoms, and his untimely death, were caused by side effects from the powerful psychiatric drugs he had been taking for 14 years. He is, they think, one of thousands of people with mental health problems who have died prematurely because their physical health was neglected.

Campaigners are using this week's World Mental Health Day to call for an end to what they say is discrimination by health staff whose attitudes lead to life-threatening conditions being dismissed or ignored.

Rufus May, a clinical psychologist, said yesterday: "The real tragedy about Daniel's death is that it symbolises how little things have changed in psychiatry. Young lives are still being wasted because we fail to listen to people and simply prescribe powerful drugs with little regard for their physical well being. The fact we continue to see people (diagnosed) with 'schizophrenia' as fundamentally different means we think it is acceptable to treat them differently."

People with mental health problems and learning disabilities die on average 10 years younger than the rest of the population, according to the Disability Rights Commission. Obesity, diabetes, certain cancers and heart disease are far more common among people taking psychiatric drugs. And those doing so are less likely to receive evidence-based health checks and treatments.

Physical health problems are often dismissed as part of a person's mental illness, something known as "diagnostic overshadowing". It can lead to life-threatening conditions being dismissed as "all in the mind".

Two years after a damning report by the Disability Rights Commission shed light on these stark inequalities, progress has been slow. A recent survey by the charity Rethink found one in five people with mental health problems had had their physical health concerns ignored by their GP in the past year, while one in four felt their doctor was the greatest source of discrimination in their lives.

Paul Corry, Rethink's director of public affairs, said: "The basic fact is stigma kills; it is not just about calling people names. Stigma and discrimination stop people from getting an early diagnosis, the right treatment at the right time and from being monitored in the same way as other people are. And then after death, there is no standardised reporting mechanism to flag up issues for people with mental health problems who die young."

The theme for World Mental Health Day this Friday is advocacy. Research from New Zealand has shown one of the most effective ways to tackle stigma is for those with mental health problems to speak out and demand more equality in all areas of life.

Charities are hosting events across the country to bring people with and without mental health problems together. They hope social contact will help to dismiss some of the myths that still persist. In north London, campaigners will join Daniel Galvin's family in a symbolic escape from the psychiatric hospital where Daniel was admitted at the age of 15. And as part of a four-year anti-stigma campaign, mental health service users and carers have been enlisted to educate medical students across England.

Sally Gomme, director of the Education not Discrimination programme, said: "We are working with medical students to try to catch future GPs, psychiatrists – all doctors, in fact – and challenge their attitudes. We want these future doctors to lead the way for change and challenge the existing discriminatory culture from within.

"The response we have had so far has been really positive. At this stage of their careers these young people really seem open to change. Talking to people with direct experience helps them to understand the negative effects of medication and the dangers of diagnostic overshadowing."

The training will also be delivered to primary school teachers and evaluated by the Institute of Psychiatry. If the programme is effective, it could eventually be rolled out in all medical schools, something the Royal College of Psychiatrists (RCP) says it would welcome. Professor Gregory O'Brien, associate dean of the RCP, said: "We do recognise physical healthcare as very important, especially if people are taking psychiatric drugs, because these people are more likely to die and die younger. But it is also important to remember people who need the strongest medication are the most severely ill. Monitoring physical health is now a key part of our training, but unfortunately practice is still lagging behind."

Paul Farmer, chief executive of the charity Mind, added: "It is time for health and social care staff to undertake a revolution in their thinking and really start treating people with mental health problems with the same dignity and respect as they treat those with physical conditions."

But for scores of people, it will come too late. Mandy from Gloucestershire died in 2002 from a brain tumour at the age of 35. She had complained of headaches and dizziness for at least two years, but her symptoms were put down to her schizophrenia. Her mother, Marita, said: "We kept telling the doctors something was wrong but they wouldn't believe us. Her psychiatrist said I was fussing and refused to send her for any tests until eventually it was too late. My daughter died because they didn't take her seriously and blamed everything on her mental illness. It makes me feel sick to hear that this is still happening."

'Watching him slowly deteriorate like an old man was horrendous'

Ana Galvin, 28, a singer from north London, tells her brother Daniel's story:

"When my big brother died at the age of 29, he was a fragment of the person I used to know. He was obese, had no energy; his legs were constantly restless and cigarettes had become his life. The gentle, artistic boy who played the cello and bass guitar was long gone.

"At 15 Daniel was being bullied at school and then started to have strange thoughts, anxiety and sleep problems. A doctor prescribed him a powerful drug called Stelazine and that was the start of a nightmare which eventually led to his death. He had bad physical reactions to the medication straight away but every symptom was seen as more evidence of schizophrenia and treated with more medication. Alternative treatments were never an option; keeping him calm was the priority.

"Daniel was really passive and never complained but my mum was convinced the medication was going to kill him. She changed GPs many times, went private, bought vitamins and demanded blood tests; getting better care for Daniel became her full-time occupation but she was accused of interfering. In the months before his death, Daniel suffered from three major epileptic fits brought on by drinking too much water. Why was he so thirsty? I don't believe this was investigated properly.

"Watching him slowly deteriorate like an old man was horrendous. I can't believe that in a civilised society this is how we treat people who are mentally distressed. Mum died from a stroke last year but she turned out to be right. I'm just glad she wasn't here to see Daniel die."

Nina Lakhani

 

People with mental health problems and learning disabilities die on average 10 years younger than the rest of the population, according to the Disability Rights Commission. Obesity, diabetes, certain cancers and heart disease are far more common among people taking psychiatric drugs. And those doing so are less likely to receive evidence-based health checks and treatments.

Physical health problems are often dismissed as part of a person's mental illness, something known as "diagnostic overshadowing". It can lead to life-threatening conditions being dismissed as "all in the mind".

Two years after a damning report by the Disability Rights Commission shed light on these stark inequalities, progress has been slow. A recent survey by the charity Rethink found one in five people with mental health problems had had their physical health concerns ignored by their GP in the past year, while one in four felt their doctor was the greatest source of discrimination in their lives.

Paul Corry, Rethink's director of public affairs, said: "The basic fact is stigma kills; it is not just about calling people names. Stigma and discrimination stop people from getting an early diagnosis, the right treatment at the right time and from being monitored in the same way as other people are. And then after death, there is no standardised reporting mechanism to flag up issues for people with mental health problems who die young."

The theme for World Mental Health Day this Friday is advocacy. Research from New Zealand has shown one of the most effective ways to tackle stigma is for those with mental health problems to speak out and demand more equality in all areas of life.

Charities are hosting events across the country to bring people with and without mental health problems together. They hope social contact will help to dismiss some of the myths that still persist. In north London, campaigners will join Daniel Galvin's family in a symbolic escape from the psychiatric hospital where Daniel was admitted at the age of 15. And as part of a four-year anti-stigma campaign, mental health service users and carers have been enlisted to educate medical students across England.

Sally Gomme, director of the Education not Discrimination programme, said: "We are working with medical students to try to catch future GPs, psychiatrists – all doctors, in fact – and challenge their attitudes. We want these future doctors to lead the way for change and challenge the existing discriminatory culture from within.

"The response we have had so far has been really positive. At this stage of their careers these young people really seem open to change. Talking to people with direct experience helps them to understand the negative effects of medication and the dangers of diagnostic overshadowing."

The training will also be delivered to primary school teachers and evaluated by the Institute of Psychiatry. If the programme is effective, it could eventually be rolled out in all medical schools, something the Royal College of Psychiatrists (RCP) says it would welcome. Professor Gregory O'Brien, associate dean of the RCP, said: "We do recognise physical healthcare as very important, especially if people are taking psychiatric drugs, because these people are more likely to die and die younger. But it is also important to remember people who need the strongest medication are the most severely ill. Monitoring physical health is now a key part of our training, but unfortunately practice is still lagging behind."

Paul Farmer, chief executive of the charity Mind, added: "It is time for health and social care staff to undertake a revolution in their thinking and really start treating people with mental health problems with the same dignity and respect as they treat those with physical conditions."

But for scores of people, it will come too late. Mandy from Gloucestershire died in 2002 from a brain tumour at the age of 35. She had complained of headaches and dizziness for at least two years, but her symptoms were put down to her schizophrenia. Her mother, Marita, said: "We kept telling the doctors something was wrong but they wouldn't believe us. Her psychiatrist said I was fussing and refused to send her for any tests until eventually it was too late. My daughter died because they didn't take her seriously and blamed everything on her mental illness. It makes me feel sick to hear that this is still happening."

'Watching him slowly deteriorate like an old man was horrendous'

Ana Galvin, 28, a singer from north London, tells her brother Daniel's story:

"When my big brother died at the age of 29, he was a fragment of the person I used to know. He was obese, had no energy; his legs were constantly restless and cigarettes had become his life. The gentle, artistic boy who played the cello and bass guitar was long gone.

"At 15 Daniel was being bullied at school and then started to have strange thoughts, anxiety and sleep problems. A doctor prescribed him a powerful drug called Stelazine and that was the start of a nightmare which eventually led to his death. He had bad physical reactions to the medication straight away but every symptom was seen as more evidence of schizophrenia and treated with more medication. Alternative treatments were never an option; keeping him calm was the priority.

"Daniel was really passive and never complained but my mum was convinced the medication was going to kill him. She changed GPs many times, went private, bought vitamins and demanded blood tests; getting better care for Daniel became her full-time occupation but she was accused of interfering. In the months before his death, Daniel suffered from three major epileptic fits brought on by drinking too much water. Why was he so thirsty? I don't believe this was investigated properly.

"Watching him slowly deteriorate like an old man was horrendous. I can't believe that in a civilised society this is how we treat people who are mentally distressed. Mum died from a stroke last year but she turned out to be right. I'm just glad she wasn't here to see Daniel die."

Nina Lakhani