The people the system isn't catching

Video 1 / Emma and Lisa's story

THE story of Emma and Lisa demonstrates how the classification of mentally ill patients and the associated bureaucracy can be dangerously counter-productive.

Lisa – not her real name – has had an unhappy emotional history since her teens, with numerous incidents of self-harm and a six and a half year enforced stay in a specialist unit in England.

But since her return to Northern Ireland, her mother, Emma – also a pseudonym – has struggled to secure support for her daughter during some of her most vulnerable moments. She puts this down to her daughter being diagnosed as having a personality disorder.

Lisa, who is 30-years-old, became mentally unwell when she was 14 and was admitted into hospital for the first time in her late teens. Around four years later she was sectioned under the Mental Health Act and sent to a medium secure unit in England specialising in mental illness. She spent six and a half years in this facility.

A consultant forensic psychiatrist based in England said in August 2010 that Lisa had been diagnosed with bipolar disorder and also suffered from a personality disorder and chronic post-traumatic stress disorder.

Lisa's medical notes show she was diagnosed as bipolar

Lisa's medical notes show she was diagnosed as bipolar

Lisa returned home to Northern Ireland in 2010 and initially was stable. The bipolar diagnosis was removed by her current consultant – but this is now being challenged by her parents.

A medication change last year led to a dramatic downturn and another suicide attempt before Christmas. Lisa was discharged from hospital just 14 hours later.

There is currently a loophole in Northern Ireland which means that people with personality disorders – but no diagnosed mental illness – cannot be detained under the act even if they are considered a suicide risk.

One GP we spoke to said that the decision on whether or not to detain a patient should take account of their mental state and the risk they pose of suicide – but Lisa claims that Emma’s diagnosis of personality disorder alone has hampered her care and left her vulnerable.

Video 2 / Emma and Lisa's story

The Northern Ireland Assembly is currently considering new mental capacity legislation which would widen the definition of ‘mental disorder’ to include personality disorders. This would mean they too could be detained for compulsory treatment if unable to make a decision themselves.

However, change is a long way off.

The DHSSPSNI spokeswoman said: “While the department is considering bringing a bill to the Assembly in the autumn, the process can take up to two years so it could be 2014 before legislation is enacted.

“The Bill could potentially apply to individuals with a personality disorder unable to make a decision themselves and who need treatment. Whether compulsory treatment would be used would be dependent on whether the treatment was serious and if the person resisted.”

Emma is seriously concerned about her daughter and the family have requested a second medical opinion of the decision that she is no longer suffering from a mental illness. They have also asked to change consultant and this call is backed by their GP – however, they have been told that they have to have a “second opinion” on this issue first to get permission for the change.

The family – including Lisa – are frustrated by the endless delays and Lisa’s mental health continues to remain worryingly unstable while they wait for action to be taken.

Emma said: “She feels very let down in the fact that they have stuck this label of personality disorder on her again when in fact she could be suffering from a mental illness.

“To be honest I think a lot of the medical staff don’t understand personality disorder. I would go as far as to say they just look upon it as the patient play acting or looking attention.

“My greatest fear is that my daughter is going to do something that is going to take her life and I’m not going to be able to do anything about it.”

Lisa’s medical notes show a life largely blighted with emotional pain – and the investment of resources, time and effort which can be required to keep patients like her safe.

She has taken at least 15 overdoses since 1995, has also tried to hang herself on a number of occasions and has a history of using cigarettes to burn herself.

Some of the 'significant risk events' listed in Lisa's care plan in 2008

Some of the 'significant risk events' listed in Lisa's care plan in 2008

Emma has appealed to our local politicians to make treatment for personality disorders a priority issue.

She said: “Having to wait two years before a possible change in legislation is scandalous. Why is legislation that could affect patients and their families who already are under immense strain trying to support their loved ones yet again pushed in the background?

“How many more patients will die from suicide before they are listened to seriously when they have the strength to tell someone how they are feeling?

“The Northern Ireland Assembly really needs to get its act together. They are not exempt from the liklihood of mental illness or personality disorder. Mental disorders have no respect for age, gender, culture, social background, religion or sexual orientation.”

THE TRUST’S VIEW

Emma and Lisa live within the South Eastern Health and Social Care Trust area.

We asked the trust for a comment on Lisa’s case and also how the trust generally treats patients with mental health issues, particularly those expressing suicidal thoughts.

Video 3 / Emma and Lisa's story

A spokeswoman said that the trust was not in a position to provide a comment on the case as this “would be a breach of our duty of confidentiality to the individual”.

However, the trust did provide a detailed general comment on how it deals with suicidal patients. Read more here.

DANNY’S STORY

Another Northern Ireland family know only too well about the heartache which follows suicide.

North Belfast teenager Danny McCartan took his own life in April 2005 at the age of 18 after his appeals for help were ignored by health professionals.

Danny McCartan

Danny McCartan

Danny, who had a history of depression and self-harm, asked to be admitted to hospital on the day of his death but his request was refused, partly because a specialist nurse said the suicide risk was low.

An independent review of Danny’s case was ordered by former Health Minister Shaun Woodward and was completed in 2007.

The review, carried out by three independent mental health experts, found that Danny died after a serious failure of care. Belfast Health and Social Care Trust apologised unreservedly to Danny’s family.

The review team criticised a “seriously inadequate” and “fragmented” nature of services which saw Danny “fall through the cracks”. They also highlighted errors of communication, confusion and delay.

The report made several recommendations, including the foundation of a specific crisis service to help adolescents and young adults at risk of suicide.

Treatment for young people with mental health issues in Northern Ireland has improved but in an interview with The Detail Danny’s father Gerard said many other issues still need to be addressed.

Gerard, who now works for the suicide prevention group Pips Programmes, said: “Many of the same problems are still there. A lot of young people with mental health problems are being put onto adult wards and that is not the right place for them to be treated. By the time the review came out about my son that was meant to have stopped.

“It has been seven years since Danny died and he was in the mental health system for a year before his death. All he was getting was medication and ongoing tests.

“My son was never given a diagnosis but after he died they said he had a personality disorder. What does that mean and why were we not told this before?”

NOT ALL SUICIDES ARE INEVITABLE

Gerard said it is wrong to view any suicide as inevitable.

“People can be saved,” he insisted. “That’s why every single threat to people’s lives should be taken seriously.

“My son asked for help and wanted to go into hospital. He said his head wasn’t right. The nurse came out to see him the day he died. We were told they had no beds and there was nothing they could do. He was asking for help and was told ‘no’.”

Gerard has been involved in investigations into three serious adverse incidents – his son’s death and deaths by suicide which affected two other families.

“At one of the meetings they only allowed one person from Pips to go in with the family. I was not allowed to say anything or open my mouth,” he said. “There were around 20 health trust people at the meeting. I know that this meant staff involved in the case held back because they felt they were being watched by their line managers. Many of those people should not have been in the room.

“This is the side of serious adverse incident investigations which is not seen by the public. Not even the family members of people who die are treated with respect and dignity.”

Gerard and other members of Pips campaigned for four and a half years for the Card Before You Leave Scheme to be put in place.

This is meant to be used for people deemed at low risk of suicide who don’t need to be admitted to hospital. The card is given to patients by staff in in-patient wards or A&E departments and includes details of follow-up arrangements for their care.

But Gerard remains concerned.

“Every suicide attempt or incident of serious self-harm should be taken seriously and all of these people should be given a mental health assessment. They should not be allowed to leave hospital before something has been done for them.

“We are also now campaigning for a safe and quiet room in A&E for people with mental health problems who are waiting to be seen. People may not tell the truth about how they are feeling when there is just a curtain between them and another patient.”

Gerard was not impressed with the Department of Health’s claim to The Detail that it could take over two years for new legislation which would allow people with personality disorders to be detained if they are at risk of suicide.

“How many people are going to die in two years?” he said. “Why does it take so long?”

And he called for a review of Northern Ireland’s suicide prevention strategy.

Gerard said: “The Protect Life strategy was introduced in 2006 as a five year strategy which aimed to reduce suicides here by 15% but it has gone up by 50%.The year my son died (2005) there were 213 suicides here. In 2010 313 people took their own lives.

“The strategy must be reviewed. Words are easy but action is what we need.

“It is now seven years on and we will never ever forget what happened to Danny. I am in this line of work because I did not want this to happen to anyone else. I am doing it in memory of my son.”

HELPLINE DETAILS

• People who feel that they or someone they know is in distress or despair can call Lifeline confidentially on 0808 808 8000. It is available 24 hours a day, seven days a week. There is also a website at www.lifelinehelpline.info

• The PHA mental health promotion website is at: www.mindingyourhead.info

• The Samaritans can be contacted by telephone on 08457 90 90 90 or email [email protected]