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People with a diagnosis of personality disorder have reason to feel on edge at the moment. The government's preoccupation with dealing with what it describes as dangerous and severe personality disorder (DSPD) has long been apparent. But few people outside Westminster have any idea about what is going on.

And that may be because the messages filtering out seem to conflict. On the one hand, the government is keen to point out that the draft mental health bill makes no explicit mention of DSPD. On the other, it has launched a comprehensive programme to develop new services for this group and is building specialist units. Little wonder there's confusion.

To complicate matters further, even the meaning of DSPD is unclear. It is not a diagnosis, but what the government describes as a "working title" to refer to a very small number of people with a severe personality disorder who pose a significant risk to the public. Estimates suggest that between 2,100 and 2,400 men in England and Wales would fall into the category of DSPD, and most are already held in highly secure settings. Studies suggest that hardly any women, perhaps even none, meet the criteria.

But it is important to point out that the current DSPD programme is not connected with or dependent upon a new mental health act. Instead, the programme has been set up under existing mental health and criminal justice legislation. Moreover, despite misconceptions, the 300 high security beds in the new specialist centres are not intended for detaining innocent people considered to be at risk of causing harm in the future, but for a very few offenders who have committed serious violent or sexual crimes.

"It's inconceivable that anyone who doesn't have a history of serious offending would meet the DSPD criteria," says Ian Keitch, clinical director of the Peaks DSPD unit at Rampton secure hospital. Rampton is one of four pilot sites with Broadmoor secure hospital and Whitemoor and Frankland prisons.

While creating new services for this difficult group has generally been welcomed, eyebrows have been raised at the £126m allocated to the programme for the spending review period covering 2001-4. Some people believe this amount of money is unjustifiably large, in the context of cash-strapped mental health services.

Keitch agrees that the programme has attracted a large investment but emphasises that new services are necessary. "The people who will be offered services are those with clear mental health needs that have been unmet. In terms of relative cost, although DSPD beds are expensive, they are not the most expensive provision within secure mental health care," he says. Treating personality disorder is always costly, he says, because psychological therapies are needed, which require a lot of professional input. But he insists that the money is new money and that funds are not being diverted away from other areas of mental health care.

There is always a debate as to whether resources should go to a small group of people with specialist needs or whether they should be spread more widely, says Tony Maden, clinical director of the DSPD service for West London Mental Health Trust which includes Broadmoor. But, in his view, the "flagship" units will be invaluable in terms of disseminating knowledge.

Maden says: "When we know so little about treating this group there's something to be said for developing a centre of expertise. The main value may not be the people they treat but in spreading knowledge and interest in the area."

It is not just those directly involved who are enthusiastic. Tony Zigmond, the Royal College of Psychiatrists' lead on mental health law reform, says: "There remain important questions about what treatment is available that might help people with personality disorder and what new treatments might be developed. If these centres can establish effective treatment then that seems a very good thing."

Although Zigmond does not take issue with the policies set out in the DSPD programme, he does have concerns about the implications of the draft mental health bill, which he fears may see more of those with personality disorders treated as if they had DSPD, although they have not committed any offence.

Although the Mental Health Act 1983 has a treatability clause, whereby individuals can only be detained if treatment is likely to alleviate or prevent a deterioration in their condition, this has been removed from the draft bill. Also, treatment is defined so widely that it would cover almost any programme to manage behaviour.

While opinion is divided, personality disorder has generally been considered untreatable so, until now, people with the diagnosis have often been exempt from compulsory treatment. But under the proposals this would change. People with personality disorder would be subject to compulsion in the same way as those with other forms of mental illness, which has led to fears that those perceived as a risk to others could be detained for preventive reasons.

Zigmond points out that, because the draft bill is not discretionary, an individual would have to be detained if the criteria were met. He doubts whether an individual could be assessed accurately as likely to cause harm to others.

"My ability to predict who might go on to commit a serious offence if they haven't already done so is very poor," he says. "With the best assessment currently available I would need to detain between 2,000 and 5,000 people unnecessarily to prevent one homicide. To keep somebody locked up on the basis they might do something wrong in the future and you can't do anything for them is ethically improper."

Since the draft bill was published the Mental Health Alliance, a coalition of organisations concerned about the government's proposals, has been warning that more people would be subject to compulsion, including the lonely man with a personality disorder who speaks and acts strangely and whose neighbours want him out of the way "just in case".


The alliance says human rights law could be breached should a person who has not committed an offence be detained or treated compulsorily in the community on the basis of a personality disorder diagnosis and a risk assessment.

Unsurprisingly, service users are also concerned, says Paul Turner, project co-ordinator for the Finding Positives in Difficult Places, a project looking at personality disorder, run by the charity the Mental Health Foundation.

"If you talk to service users about this there's a great deal of anxiety even among people who don't have a diagnosis of dangerous or severe personality disorder," he says. "There's a great fear that people are going to be detained and that it's going to be difficult to access mental health review tribunals and that detention is going to be long term. There's a fear that the criteria for detention will be generalised to cover all people with personality disorder." He adds that people who have a personality disorder are often not told of their diagnosis, have problems accessing support services, and find that mental health workers discriminate against them.

"If you start talking to professionals in the field you become aware that there's huge concern about the deserving and the undeserving in terms of providing support services. Recently at a conference, a professional said to me, 'why should we provide these people with services? We can treat 10 people with schizophrenia in the time we can deal with one person with personality disorder'."

There needs to be a change of thinking, he adds, with professionals developing some "therapeutic optimism".

Turner, a social worker by background, says social workers have a key role to play in early intervention because there is an association between childhood trauma and personality disorder.

That personality disorder is receiving valuable attention from the government is in no doubt. But services for people with personality disorder at all levels of severity need drastic improvement. It is to be hoped that guidance produced by the National Institute for Mental Health in England earlier this year will help bring about the necessary changes.<sup>1 

1</sup> National Institute for Mental Health in England, Personality Disorder: No Longer a Diagnosis of Exclusion, 2003

A diagnosis that is difficult to live with

"I don't find the diagnosis stigmatising among the public. Not many people understand personality disorder. But I have felt stigmatised by mental health services," says Helen Gilburt.

She was diagnosed with borderline personality disorder in 1996 when she was 23 and takes antipsychotics, antidepressants and mood stabilisers. She says that her diagnosis can be difficult to live with as it affects her everyday life and she often feels lonely. People with borderline personality disorder find relationships difficult, and everyday things threatening.

"If someone says anything negative about something I've worked on I feel down about myself as if they hate everything I do. Sometimes I feel the need to cut," she says.

She has felt marginalised by mental health services. "For mental health professionals it's something they can't cure and they find that hard," says Gilburt, who is an information officer for mental health charity Rethink.

She adds it is difficult to access treatment. One common choice, dialectical behaviour therapy, a type of cognitive therapy, is practised only in some places because it requires specialist training, she says, adding that the therapies used to treat personality disorder tend to be time consuming.

"Personality disorders are caused by long-term trauma or abuse and a quick fix doesn't sort them out. It needs long-term therapy. At the moment most mental health trusts are not keen on long-term therapy because it's time consuming, costly and we may not recover," she explains.

Gilburt is concerned that ordinary mental health services may be suffering from a lack of resources because of the money being ploughed into the DSPD centres.

"They don't know how they are going to treat these people - and other services are suffering. The money would be better going into personality disorder before it becomes dangerous and severe," she says.

She believes personality disorder is being picked up too late when it has got out of hand and there is a lack of preventive measures. She considers the draft mental health bill to be more of a "Home Office bill", with the possibility that people who have not committed any crime could be detained.

"I would be scared of that. I've had behaviour that could be deemed threatening. I worry I could be seen as one of those people who could be dangerous even though I'm not," she says.

In addition, she is worried about how people would be assessed as having DSPD. "Who is going to diagnose this? Psychiatrists won't because it's not in the diagnostic manual. So it's going to be the Home Office diagnosing people and I think that's very dangerous."