The Guardian: 'She told me she had lost her personality'

[Guest guest]

From a dear dear ally in the UK...

http://www.guardian.co.uk/health/story/0,3605,1284491,00.html

'She told me she had lost her personality'

Kieve died after falling from a window - but her mother Millie Kieve

believes that years of suffering adverse drug reactions were to blame

Tuesday August 17, 2004

The Guardian

Last Friday I lit a candle for my beloved daughter . I returned to

Bournemouth, where I had spent my last holiday with her, and sat on the

bench placed in her memory, overlooking the sea. It was 1995 and was

only 30 when tragedy struck.

was loving, caring and vivacious with a delightful sense of humour.

She was a wonderful daughter and adored her three brothers. She worked with

two of them - performing in a magic act with , and in the family

business with Mark. Life was good until 1985, so what happened to bring such

devastation to our family?

In April of that year, the drug suphasalazine was prescribed to , after

a diagnosis (later considered questionable) of Crohn's Disease of the bowel.

The first sign of a psychological adverse drug reaction (ADR) was soon

afterwards, when experienced terrifying hallucinatory nightmares. The

consultant insisted that she should continue taking the drug. I later found

that his advice was given in ignorance - he had not even seen the drug data

sheet.

The family departed for a cruise in August and it was during this time that

's personality began to change. She became like a tightly coiled

spring, ready to snap, and then went missing from the ship during a

stopover. When she was eventually found she had become psychotic and lost

her sense of reality. Flown by air ambulance to hospital in London, the

consultant just glanced at her, then turned and walked briskly away. We were

shocked to hear him say, " Nothing to do with me, " as he left.

was transferred to a psychiatric hospital and suffered further

adverse reactions to the drug Haloperidol, which had been administered to

treat the psychosis. I remember her ringing me from hospital in tears, to

tell me that there were maggots crawling over her face and into her ears. By

the time I got there, she was unconscious - knocked out with another drug.

When she came round, her neck was distended, her tongue was sticking to the

roof of her mouth and she was gagging - all ADRs to the treatment.

A recent study in the British Medical Journal found that one in 16 of all

admissions to hospital is caused by side effects. The author, Munir

Pirmohamed, professor of clinical pharmacology at Liverpool University, said

his figures suggested that side effects cause the deaths of about 5,700

patients each year. It did not even include psychiatric ADRs.

Time heals and picked up her life again. She came off all medication

and found a job as a PA, where she was highly regarded by her employers.

Meanwhile, we were all assured by the psychiatrist that this had been a

crisis that would not happen again.

But the dark clouds did descend again, six years later. An adverse reaction

to Dianette, a drug prescribed for hormonal problems and acne, led to

another mood change. An antidepressant, Fluanxol was prescribed. Its

immediate effect was akathisia, or as described it, " a panic attack " .

We might have found our way out of the woods by 1992 were it not for a

dental surgeon who recommended the removal of 's impacted wisdom teeth.

Just seven days afterwards, in the words of the surgeon, " This poor girl

slipped into paranoia, probably due to the surgery. "

Unknown to me, a few days before the surgery, had taken a

morning-after pill because her boyfriend's condom had split. The risk of

psychiatric adverse effects of this drug is on the data sheet, but when

phoned the surgeon's secretary, she told her there was no need to

mention it to the surgeon. Whether this was a factor I do not know, but I am

convinced it could hardly have helped.

After recovering from this episode, was told to take at regular

intervals, an anti-psychotic drug, Largactyl (or chlorpromazine). To

counteract the side effects, which made her muscles go rigid, she was

prescribed an anti-Parkinson drug, Kemadrin, as well as Temazepam, a

sleeping pill. Altogether, a potent cocktail for someone weighing only seven

stone.

What is difficult to convey is that 's psychological " breakdowns " were

so devastating for all concerned that it was a relief to find a drug to

" stabilise " her. We did not know then that these drugs would also cause

problems.

Energy was spent trying to keep some normality in our lives. We were in a

kind of spiral of ignorance and denial, trying to pick up our lives and

hoping all would soon be okay. It was difficult to talk to people about the

nightmares we were going through. just wanted to be normal and, as

soon as she felt fine, wanted to take control of her life and not look back

at the nightmares of the past. But my daughter was on a downhill slide.

started suffering dizziness and low blood pressure. Her skin, eyesight

and sparkling alertness were affected and her libido diminished She told me

she felt she had lost a sense of her own personality.

What had become of the feisty girl who travelled alone to a village in Japan

to be with her brother for his 21st birthday? The girl who pretended to

be a reporter to have her photograph taken with her idol, Travolta, at

a movie premiere? The glamorous performer delighting audiences in her

brother's magic act?

On August 13 1995, we were on holiday in Bournemouth and my husband Jeff had

returned home. I spent a peaceful day on the beach with and a relaxing

evening listening to music. The next morning, I awoke to find her by my bed

concerned at the commotion outside the apartment block.

A huge crane was being raised from the back of a large vehicle, and the

warning sound of the lorry reversing into the area at the side of the flats

beside 's bedroom still sounds in my ears.

She felt uneasy and asked if we could go home. I suggested she get dressed a

nd went to make a telephone call. Moments later, I went into 's room to

find a kitchen chair by the window, which was swivelled to its widest point

with the curtain flapping against the frame. The horror of my realisation

was something that no mother should ever have to experience.

On the vinyl seat was a silky quilt, the cause of her slipping, according to

the inquest.

After died, I found a book in her room called " Tranquillisers - a

comprehensive guide to the range of medicines in the UK that affect some

aspect of the working of the brain " . She had obtained it from her college

library, where she was studying beauty therapy. The college kindly let me

keep the book. In it she had underlined certain side effects listed for the

drugs she was taking.

One was a high dose of procyclidine (or Kemadrin), said to cause anxiety,

confusion, agitation and psychological disturbance. To my horror, I found

that not only had been misprescribed (on repeat prescriptions) three

times the dose her psychiatrist had intended, but the manufacturer's data

sheet recommended stopping the drug after three months. was on this

dose for two years.

In shock, I went to the British Library and found several papers and

journals with references to the psychiatric adverse effects of all 's

drugs. I felt I had opened a can of worms and that it was my destiny to do

something about that wall of silence.

In 1998, I founded the charity April (Adverse Psychiatric Reactions

Information Link), which was also the month of 's birthday. I hoped

that, by increasing awareness, perhaps the terrible waste of her life could

save someone else's.

I now receive a constant flow of emails reporting the same kind of

experiences as 's. People tell me how helpful they find it that someone

understands. One woman who was very depressed, showed her doctor medical

information that I had sent her. Only then did he agree to change the

medication for her heart problems. " I feel 600% better, " she told me.

I send out withdrawal protocols to help doctors support their patients

during withdrawal from SSRI antidepressants and benzodiazepines, as well as

presenting workshops for health professionals to persuade them to report

ADRs on Yellow Cards, the side-effect reporting system which, 40 years after

its conception, is still not effective. I also contribute evidence to

department of health and government inquiries and organise conferences. The

next one, Adverse Psychiatric Reactions to Medicines and Anaesthetics, is on

November 4.

April is now the main focus of my life and I campaign on all sorts of

issues, from demanding that coroners record all drugs prescribed, stopped or

doses changed, in the months prior to sudden death, to making sure that

medical students understand about ADRs. I can never bring my lovely daughter

back but it is a comfort to be able to help others. I believe awareness

saves lives and have taken on the task of bringing that awareness to the

medical profession and the public.

· www.april.org.uk

[Guest guest]

From a dear dear ally in the UK...

http://www.guardian.co.uk/health/story/0,3605,1284491,00.html

'She told me she had lost her personality'

Kieve died after falling from a window - but her mother Millie Kieve

believes that years of suffering adverse drug reactions were to blame

Tuesday August 17, 2004

The Guardian

Last Friday I lit a candle for my beloved daughter . I returned to

Bournemouth, where I had spent my last holiday with her, and sat on the

bench placed in her memory, overlooking the sea. It was 1995 and was

only 30 when tragedy struck.

was loving, caring and vivacious with a delightful sense of humour.

She was a wonderful daughter and adored her three brothers. She worked with

two of them - performing in a magic act with , and in the family

business with Mark. Life was good until 1985, so what happened to bring such

devastation to our family?

In April of that year, the drug suphasalazine was prescribed to , after

a diagnosis (later considered questionable) of Crohn's Disease of the bowel.

The first sign of a psychological adverse drug reaction (ADR) was soon

afterwards, when experienced terrifying hallucinatory nightmares. The

consultant insisted that she should continue taking the drug. I later found

that his advice was given in ignorance - he had not even seen the drug data

sheet.

The family departed for a cruise in August and it was during this time that

's personality began to change. She became like a tightly coiled

spring, ready to snap, and then went missing from the ship during a

stopover. When she was eventually found she had become psychotic and lost

her sense of reality. Flown by air ambulance to hospital in London, the

consultant just glanced at her, then turned and walked briskly away. We were

shocked to hear him say, " Nothing to do with me, " as he left.

was transferred to a psychiatric hospital and suffered further

adverse reactions to the drug Haloperidol, which had been administered to

treat the psychosis. I remember her ringing me from hospital in tears, to

tell me that there were maggots crawling over her face and into her ears. By

the time I got there, she was unconscious - knocked out with another drug.

When she came round, her neck was distended, her tongue was sticking to the

roof of her mouth and she was gagging - all ADRs to the treatment.

A recent study in the British Medical Journal found that one in 16 of all

admissions to hospital is caused by side effects. The author, Munir

Pirmohamed, professor of clinical pharmacology at Liverpool University, said

his figures suggested that side effects cause the deaths of about 5,700

patients each year. It did not even include psychiatric ADRs.

Time heals and picked up her life again. She came off all medication

and found a job as a PA, where she was highly regarded by her employers.

Meanwhile, we were all assured by the psychiatrist that this had been a

crisis that would not happen again.

But the dark clouds did descend again, six years later. An adverse reaction

to Dianette, a drug prescribed for hormonal problems and acne, led to

another mood change. An antidepressant, Fluanxol was prescribed. Its

immediate effect was akathisia, or as described it, " a panic attack " .

We might have found our way out of the woods by 1992 were it not for a

dental surgeon who recommended the removal of 's impacted wisdom teeth.

Just seven days afterwards, in the words of the surgeon, " This poor girl

slipped into paranoia, probably due to the surgery. "

Unknown to me, a few days before the surgery, had taken a

morning-after pill because her boyfriend's condom had split. The risk of

psychiatric adverse effects of this drug is on the data sheet, but when

phoned the surgeon's secretary, she told her there was no need to

mention it to the surgeon. Whether this was a factor I do not know, but I am

convinced it could hardly have helped.

After recovering from this episode, was told to take at regular

intervals, an anti-psychotic drug, Largactyl (or chlorpromazine). To

counteract the side effects, which made her muscles go rigid, she was

prescribed an anti-Parkinson drug, Kemadrin, as well as Temazepam, a

sleeping pill. Altogether, a potent cocktail for someone weighing only seven

stone.

What is difficult to convey is that 's psychological " breakdowns " were

so devastating for all concerned that it was a relief to find a drug to

" stabilise " her. We did not know then that these drugs would also cause

problems.

Energy was spent trying to keep some normality in our lives. We were in a

kind of spiral of ignorance and denial, trying to pick up our lives and

hoping all would soon be okay. It was difficult to talk to people about the

nightmares we were going through. just wanted to be normal and, as

soon as she felt fine, wanted to take control of her life and not look back

at the nightmares of the past. But my daughter was on a downhill slide.

started suffering dizziness and low blood pressure. Her skin, eyesight

and sparkling alertness were affected and her libido diminished She told me

she felt she had lost a sense of her own personality.

What had become of the feisty girl who travelled alone to a village in Japan

to be with her brother for his 21st birthday? The girl who pretended to

be a reporter to have her photograph taken with her idol, Travolta, at

a movie premiere? The glamorous performer delighting audiences in her

brother's magic act?

On August 13 1995, we were on holiday in Bournemouth and my husband Jeff had

returned home. I spent a peaceful day on the beach with and a relaxing

evening listening to music. The next morning, I awoke to find her by my bed

concerned at the commotion outside the apartment block.

A huge crane was being raised from the back of a large vehicle, and the

warning sound of the lorry reversing into the area at the side of the flats

beside 's bedroom still sounds in my ears.

She felt uneasy and asked if we could go home. I suggested she get dressed a

nd went to make a telephone call. Moments later, I went into 's room to

find a kitchen chair by the window, which was swivelled to its widest point

with the curtain flapping against the frame. The horror of my realisation

was something that no mother should ever have to experience.

On the vinyl seat was a silky quilt, the cause of her slipping, according to

the inquest.

After died, I found a book in her room called " Tranquillisers - a

comprehensive guide to the range of medicines in the UK that affect some

aspect of the working of the brain " . She had obtained it from her college

library, where she was studying beauty therapy. The college kindly let me

keep the book. In it she had underlined certain side effects listed for the

drugs she was taking.

One was a high dose of procyclidine (or Kemadrin), said to cause anxiety,

confusion, agitation and psychological disturbance. To my horror, I found

that not only had been misprescribed (on repeat prescriptions) three

times the dose her psychiatrist had intended, but the manufacturer's data

sheet recommended stopping the drug after three months. was on this

dose for two years.

In shock, I went to the British Library and found several papers and

journals with references to the psychiatric adverse effects of all 's

drugs. I felt I had opened a can of worms and that it was my destiny to do

something about that wall of silence.

In 1998, I founded the charity April (Adverse Psychiatric Reactions

Information Link), which was also the month of 's birthday. I hoped

that, by increasing awareness, perhaps the terrible waste of her life could

save someone else's.

I now receive a constant flow of emails reporting the same kind of

experiences as 's. People tell me how helpful they find it that someone

understands. One woman who was very depressed, showed her doctor medical

information that I had sent her. Only then did he agree to change the

medication for her heart problems. " I feel 600% better, " she told me.

I send out withdrawal protocols to help doctors support their patients

during withdrawal from SSRI antidepressants and benzodiazepines, as well as

presenting workshops for health professionals to persuade them to report

ADRs on Yellow Cards, the side-effect reporting system which, 40 years after

its conception, is still not effective. I also contribute evidence to

department of health and government inquiries and organise conferences. The

next one, Adverse Psychiatric Reactions to Medicines and Anaesthetics, is on

November 4.

April is now the main focus of my life and I campaign on all sorts of

issues, from demanding that coroners record all drugs prescribed, stopped or

doses changed, in the months prior to sudden death, to making sure that

medical students understand about ADRs. I can never bring my lovely daughter

back but it is a comfort to be able to help others. I believe awareness

saves lives and have taken on the task of bringing that awareness to the

medical profession and the public.

· www.april.org.uk

[Guest guest]

From a dear dear ally in the UK...

http://www.guardian.co.uk/health/story/0,3605,1284491,00.html

'She told me she had lost her personality'

Kieve died after falling from a window - but her mother Millie Kieve

believes that years of suffering adverse drug reactions were to blame

Tuesday August 17, 2004

The Guardian

Last Friday I lit a candle for my beloved daughter . I returned to

Bournemouth, where I had spent my last holiday with her, and sat on the

bench placed in her memory, overlooking the sea. It was 1995 and was

only 30 when tragedy struck.

was loving, caring and vivacious with a delightful sense of humour.

She was a wonderful daughter and adored her three brothers. She worked with

two of them - performing in a magic act with , and in the family

business with Mark. Life was good until 1985, so what happened to bring such

devastation to our family?

In April of that year, the drug suphasalazine was prescribed to , after

a diagnosis (later considered questionable) of Crohn's Disease of the bowel.

The first sign of a psychological adverse drug reaction (ADR) was soon

afterwards, when experienced terrifying hallucinatory nightmares. The

consultant insisted that she should continue taking the drug. I later found

that his advice was given in ignorance - he had not even seen the drug data

sheet.

The family departed for a cruise in August and it was during this time that

's personality began to change. She became like a tightly coiled

spring, ready to snap, and then went missing from the ship during a

stopover. When she was eventually found she had become psychotic and lost

her sense of reality. Flown by air ambulance to hospital in London, the

consultant just glanced at her, then turned and walked briskly away. We were

shocked to hear him say, " Nothing to do with me, " as he left.

was transferred to a psychiatric hospital and suffered further

adverse reactions to the drug Haloperidol, which had been administered to

treat the psychosis. I remember her ringing me from hospital in tears, to

tell me that there were maggots crawling over her face and into her ears. By

the time I got there, she was unconscious - knocked out with another drug.

When she came round, her neck was distended, her tongue was sticking to the

roof of her mouth and she was gagging - all ADRs to the treatment.

A recent study in the British Medical Journal found that one in 16 of all

admissions to hospital is caused by side effects. The author, Munir

Pirmohamed, professor of clinical pharmacology at Liverpool University, said

his figures suggested that side effects cause the deaths of about 5,700

patients each year. It did not even include psychiatric ADRs.

Time heals and picked up her life again. She came off all medication

and found a job as a PA, where she was highly regarded by her employers.

Meanwhile, we were all assured by the psychiatrist that this had been a

crisis that would not happen again.

But the dark clouds did descend again, six years later. An adverse reaction

to Dianette, a drug prescribed for hormonal problems and acne, led to

another mood change. An antidepressant, Fluanxol was prescribed. Its

immediate effect was akathisia, or as described it, " a panic attack " .

We might have found our way out of the woods by 1992 were it not for a

dental surgeon who recommended the removal of 's impacted wisdom teeth.

Just seven days afterwards, in the words of the surgeon, " This poor girl

slipped into paranoia, probably due to the surgery. "

Unknown to me, a few days before the surgery, had taken a

morning-after pill because her boyfriend's condom had split. The risk of

psychiatric adverse effects of this drug is on the data sheet, but when

phoned the surgeon's secretary, she told her there was no need to

mention it to the surgeon. Whether this was a factor I do not know, but I am

convinced it could hardly have helped.

After recovering from this episode, was told to take at regular

intervals, an anti-psychotic drug, Largactyl (or chlorpromazine). To

counteract the side effects, which made her muscles go rigid, she was

prescribed an anti-Parkinson drug, Kemadrin, as well as Temazepam, a

sleeping pill. Altogether, a potent cocktail for someone weighing only seven

stone.

What is difficult to convey is that 's psychological " breakdowns " were

so devastating for all concerned that it was a relief to find a drug to

" stabilise " her. We did not know then that these drugs would also cause

problems.

Energy was spent trying to keep some normality in our lives. We were in a

kind of spiral of ignorance and denial, trying to pick up our lives and

hoping all would soon be okay. It was difficult to talk to people about the

nightmares we were going through. just wanted to be normal and, as

soon as she felt fine, wanted to take control of her life and not look back

at the nightmares of the past. But my daughter was on a downhill slide.

started suffering dizziness and low blood pressure. Her skin, eyesight

and sparkling alertness were affected and her libido diminished She told me

she felt she had lost a sense of her own personality.

What had become of the feisty girl who travelled alone to a village in Japan

to be with her brother for his 21st birthday? The girl who pretended to

be a reporter to have her photograph taken with her idol, Travolta, at

a movie premiere? The glamorous performer delighting audiences in her

brother's magic act?

On August 13 1995, we were on holiday in Bournemouth and my husband Jeff had

returned home. I spent a peaceful day on the beach with and a relaxing

evening listening to music. The next morning, I awoke to find her by my bed

concerned at the commotion outside the apartment block.

A huge crane was being raised from the back of a large vehicle, and the

warning sound of the lorry reversing into the area at the side of the flats

beside 's bedroom still sounds in my ears.

She felt uneasy and asked if we could go home. I suggested she get dressed a

nd went to make a telephone call. Moments later, I went into 's room to

find a kitchen chair by the window, which was swivelled to its widest point

with the curtain flapping against the frame. The horror of my realisation

was something that no mother should ever have to experience.

On the vinyl seat was a silky quilt, the cause of her slipping, according to

the inquest.

After died, I found a book in her room called " Tranquillisers - a

comprehensive guide to the range of medicines in the UK that affect some

aspect of the working of the brain " . She had obtained it from her college

library, where she was studying beauty therapy. The college kindly let me

keep the book. In it she had underlined certain side effects listed for the

drugs she was taking.

One was a high dose of procyclidine (or Kemadrin), said to cause anxiety,

confusion, agitation and psychological disturbance. To my horror, I found

that not only had been misprescribed (on repeat prescriptions) three

times the dose her psychiatrist had intended, but the manufacturer's data

sheet recommended stopping the drug after three months. was on this

dose for two years.

In shock, I went to the British Library and found several papers and

journals with references to the psychiatric adverse effects of all 's

drugs. I felt I had opened a can of worms and that it was my destiny to do

something about that wall of silence.

In 1998, I founded the charity April (Adverse Psychiatric Reactions

Information Link), which was also the month of 's birthday. I hoped

that, by increasing awareness, perhaps the terrible waste of her life could

save someone else's.

I now receive a constant flow of emails reporting the same kind of

experiences as 's. People tell me how helpful they find it that someone

understands. One woman who was very depressed, showed her doctor medical

information that I had sent her. Only then did he agree to change the

medication for her heart problems. " I feel 600% better, " she told me.

I send out withdrawal protocols to help doctors support their patients

during withdrawal from SSRI antidepressants and benzodiazepines, as well as

presenting workshops for health professionals to persuade them to report

ADRs on Yellow Cards, the side-effect reporting system which, 40 years after

its conception, is still not effective. I also contribute evidence to

department of health and government inquiries and organise conferences. The

next one, Adverse Psychiatric Reactions to Medicines and Anaesthetics, is on

November 4.

April is now the main focus of my life and I campaign on all sorts of

issues, from demanding that coroners record all drugs prescribed, stopped or

doses changed, in the months prior to sudden death, to making sure that

medical students understand about ADRs. I can never bring my lovely daughter

back but it is a comfort to be able to help others. I believe awareness

saves lives and have taken on the task of bringing that awareness to the

medical profession and the public.

· www.april.org.uk

[Guest guest]

From a dear dear ally in the UK...

http://www.guardian.co.uk/health/story/0,3605,1284491,00.html

'She told me she had lost her personality'

Kieve died after falling from a window - but her mother Millie Kieve

believes that years of suffering adverse drug reactions were to blame

Tuesday August 17, 2004

The Guardian

Last Friday I lit a candle for my beloved daughter . I returned to

Bournemouth, where I had spent my last holiday with her, and sat on the

bench placed in her memory, overlooking the sea. It was 1995 and was

only 30 when tragedy struck.

was loving, caring and vivacious with a delightful sense of humour.

She was a wonderful daughter and adored her three brothers. She worked with

two of them - performing in a magic act with , and in the family

business with Mark. Life was good until 1985, so what happened to bring such

devastation to our family?

In April of that year, the drug suphasalazine was prescribed to , after

a diagnosis (later considered questionable) of Crohn's Disease of the bowel.

The first sign of a psychological adverse drug reaction (ADR) was soon

afterwards, when experienced terrifying hallucinatory nightmares. The

consultant insisted that she should continue taking the drug. I later found

that his advice was given in ignorance - he had not even seen the drug data

sheet.

The family departed for a cruise in August and it was during this time that

's personality began to change. She became like a tightly coiled

spring, ready to snap, and then went missing from the ship during a

stopover. When she was eventually found she had become psychotic and lost

her sense of reality. Flown by air ambulance to hospital in London, the

consultant just glanced at her, then turned and walked briskly away. We were

shocked to hear him say, " Nothing to do with me, " as he left.

was transferred to a psychiatric hospital and suffered further

adverse reactions to the drug Haloperidol, which had been administered to

treat the psychosis. I remember her ringing me from hospital in tears, to

tell me that there were maggots crawling over her face and into her ears. By

the time I got there, she was unconscious - knocked out with another drug.

When she came round, her neck was distended, her tongue was sticking to the

roof of her mouth and she was gagging - all ADRs to the treatment.

A recent study in the British Medical Journal found that one in 16 of all

admissions to hospital is caused by side effects. The author, Munir

Pirmohamed, professor of clinical pharmacology at Liverpool University, said

his figures suggested that side effects cause the deaths of about 5,700

patients each year. It did not even include psychiatric ADRs.

Time heals and picked up her life again. She came off all medication

and found a job as a PA, where she was highly regarded by her employers.

Meanwhile, we were all assured by the psychiatrist that this had been a

crisis that would not happen again.

But the dark clouds did descend again, six years later. An adverse reaction

to Dianette, a drug prescribed for hormonal problems and acne, led to

another mood change. An antidepressant, Fluanxol was prescribed. Its

immediate effect was akathisia, or as described it, " a panic attack " .

We might have found our way out of the woods by 1992 were it not for a

dental surgeon who recommended the removal of 's impacted wisdom teeth.

Just seven days afterwards, in the words of the surgeon, " This poor girl

slipped into paranoia, probably due to the surgery. "

Unknown to me, a few days before the surgery, had taken a

morning-after pill because her boyfriend's condom had split. The risk of

psychiatric adverse effects of this drug is on the data sheet, but when

phoned the surgeon's secretary, she told her there was no need to

mention it to the surgeon. Whether this was a factor I do not know, but I am

convinced it could hardly have helped.

After recovering from this episode, was told to take at regular

intervals, an anti-psychotic drug, Largactyl (or chlorpromazine). To

counteract the side effects, which made her muscles go rigid, she was

prescribed an anti-Parkinson drug, Kemadrin, as well as Temazepam, a

sleeping pill. Altogether, a potent cocktail for someone weighing only seven

stone.

What is difficult to convey is that 's psychological " breakdowns " were

so devastating for all concerned that it was a relief to find a drug to

" stabilise " her. We did not know then that these drugs would also cause

problems.

Energy was spent trying to keep some normality in our lives. We were in a

kind of spiral of ignorance and denial, trying to pick up our lives and

hoping all would soon be okay. It was difficult to talk to people about the

nightmares we were going through. just wanted to be normal and, as

soon as she felt fine, wanted to take control of her life and not look back

at the nightmares of the past. But my daughter was on a downhill slide.

started suffering dizziness and low blood pressure. Her skin, eyesight

and sparkling alertness were affected and her libido diminished She told me

she felt she had lost a sense of her own personality.

What had become of the feisty girl who travelled alone to a village in Japan

to be with her brother for his 21st birthday? The girl who pretended to

be a reporter to have her photograph taken with her idol, Travolta, at

a movie premiere? The glamorous performer delighting audiences in her

brother's magic act?

On August 13 1995, we were on holiday in Bournemouth and my husband Jeff had

returned home. I spent a peaceful day on the beach with and a relaxing

evening listening to music. The next morning, I awoke to find her by my bed

concerned at the commotion outside the apartment block.

A huge crane was being raised from the back of a large vehicle, and the

warning sound of the lorry reversing into the area at the side of the flats

beside 's bedroom still sounds in my ears.

She felt uneasy and asked if we could go home. I suggested she get dressed a

nd went to make a telephone call. Moments later, I went into 's room to

find a kitchen chair by the window, which was swivelled to its widest point

with the curtain flapping against the frame. The horror of my realisation

was something that no mother should ever have to experience.

On the vinyl seat was a silky quilt, the cause of her slipping, according to

the inquest.

After died, I found a book in her room called " Tranquillisers - a

comprehensive guide to the range of medicines in the UK that affect some

aspect of the working of the brain " . She had obtained it from her college

library, where she was studying beauty therapy. The college kindly let me

keep the book. In it she had underlined certain side effects listed for the

drugs she was taking.

One was a high dose of procyclidine (or Kemadrin), said to cause anxiety,

confusion, agitation and psychological disturbance. To my horror, I found

that not only had been misprescribed (on repeat prescriptions) three

times the dose her psychiatrist had intended, but the manufacturer's data

sheet recommended stopping the drug after three months. was on this

dose for two years.

In shock, I went to the British Library and found several papers and

journals with references to the psychiatric adverse effects of all 's

drugs. I felt I had opened a can of worms and that it was my destiny to do

something about that wall of silence.

In 1998, I founded the charity April (Adverse Psychiatric Reactions

Information Link), which was also the month of 's birthday. I hoped

that, by increasing awareness, perhaps the terrible waste of her life could

save someone else's.

I now receive a constant flow of emails reporting the same kind of

experiences as 's. People tell me how helpful they find it that someone

understands. One woman who was very depressed, showed her doctor medical

information that I had sent her. Only then did he agree to change the

medication for her heart problems. " I feel 600% better, " she told me.

I send out withdrawal protocols to help doctors support their patients

during withdrawal from SSRI antidepressants and benzodiazepines, as well as

presenting workshops for health professionals to persuade them to report

ADRs on Yellow Cards, the side-effect reporting system which, 40 years after

its conception, is still not effective. I also contribute evidence to

department of health and government inquiries and organise conferences. The

next one, Adverse Psychiatric Reactions to Medicines and Anaesthetics, is on

November 4.

April is now the main focus of my life and I campaign on all sorts of

issues, from demanding that coroners record all drugs prescribed, stopped or

doses changed, in the months prior to sudden death, to making sure that

medical students understand about ADRs. I can never bring my lovely daughter

back but it is a comfort to be able to help others. I believe awareness

saves lives and have taken on the task of bringing that awareness to the

medical profession and the public.

· www.april.org.uk