THERE IS A common misconception about people with schizophrenia – that they are dangerous.
When the condition is reported in the media, it’s often in relation to an act of violence: a person, who happens to have schizophrenia, has hurt or killed someone.
In the aftermath of such an attack, Professor Merete Nordentoft, a Danish psychiatrist, is generally asked to contribute to media panels.
“It’s not very often, but sometimes a person is killed, or there’s been an attack, and it is almost always something that has been carried out by people with untreated psychosis.”
Whenever she appears on such programmes, Nordentoft always makes the same point: “People with schizophrenia are not dangerous, 99.9% are not dangerous. Those who are dangerous are those who have untreated psychosis.”
Mental health is spoken about quite openly in Denmark and the country is in the early stages of implementing a 10-year plan that will increase funding and improve services.
Following Denmark’s general election in November 2022, the Social Democrats-led government committed to a substantial investment in psychiatry.
The decade-long plan that was subsequently developed commits to increasing the annual budget for psychiatry by about 18% over the coming years. It’s expected to be implemented regardless of which party is in power.
Nordentoft said the government has committed to increasing the budget by around €100 million per year until they reach annual funding of about €650 million (4.5 billion Danish krone) by 2030.
As well as the input of medical experts, an umbrella group called the Psychiatry Alliance – composed of stakeholders from user organisations, trade unions and scientific societies – contributed to the plan.
Nordentoft said this “united” front across various disciplines was vital in getting the deal over the line.
We were able to unify forces… That helped us put pressure on the government.
It’s notable that, ahead of the 2022 election, psychiatry was ranked as the fourth most important issue for voters in Denmark.
According to research, one-sixth of children and teenagers in Denmark avail of mental health services before the age of 18, and one-third of the population receives treatment from mental health services during their lifetime.
Hanne*, a social worker aged in her early 30s, is one of those people.
She first had symptoms of psychosis when she was 18 – she would see things that were not there and, at times, thought other people could read her mind.
The most common symptoms associated with psychosis are hallucinations and disturbed thoughts.
Over time, Hanne’s health deteriorated further. At her lowest points, she considered suicide. “When I was 24, it got a lot worse and I started to self-harm more,” she recalled.
She went to her doctor, who in turn referred her to a psychiatrist. Some people have a one-off psychotic episode but others, like Hanne, develop a related disorder like schizophrenia.
Hanne said being diagnosed with schizophrenia was “a big relief” as she could finally “get the right help”.
She was treated via a programme called Opus, through which people receive support from a multidisciplinary team including a psychiatrist, psychologist, social worker and occupational therapist.
Hanne dropped out of her engineering course but, when her health improved, she went back to university – this time to study social work.
“I was on a lot of different medications before we found something that worked for me.”
She was taking antipsychotics for several years but, as her condition improved, her psychiatrist reduced the dosage and she has not been taking any medication for three years.
I’m no longer fulfilling the criteria for schizophrenia.
Hanne has been a social worker for almost four years and has a young daughter. None of this would have been possible if she had not received the Opus support.
“I don’t think I would be where I am today if I hadn’t gotten that help at that time. It’s very important to get that kind of help when you’re young.
“I’m working and paying taxes, I’m raising my daughter, I’m contributing to society. I want people who are struggling to know that there is hope.”
Hanne’s job involves supporting people to go back to work after a physical or mental illness. In some cases, she helps individuals with schizophrenia.
I think I believe in these people more than some of my colleagues do, because I don’t see it as a stop sign, ‘okay, there’s no future for you’.
However, she said it is more difficult to help people with schizophrenia if they did not receive early intervention when they were younger.
“Sometimes they have lost themselves.”
When asked what she would like people to know about schizophrenia, Hanne said: “When you’ve met one person with schizophrenia, you’ve met one person with schizophrenia.”
She’s paraphrasing the often-quoted remark from Dr Stephen Shore – ‘If you’ve met one person with autism, you’ve met one person with autism’.
Nordentoft agrees that it’s “critical” to treat people with psychosis as quickly as possible.
“It’s shortly after the onset that all the bad things happen – suicide rates are higher in the beginning, and also the risk of dropping out of school and work,” she said.
“You should [intervene] quickly, rather than wait for years – then it’s much more difficult to make changes. In many cases, people improve during the first two, three, four, five years, and get more stable after that.”
Nordentoft was involved in the Opus trial – from which the programme that helped Hanne gets its name.
The trial, carried out from 1998 to 2000, involved 547 patients with psychosis. Around half received more integrated treatment for two years, involving community support and family-involvement. The others received ‘standard’ treatment.
Five years later, people in the first group had lower mortality rates and fewer hospital admissions. These patients were also more likely to be employed and less likely to need state support such as social welfare payments and supported accommodation.
Nordentoft said that, mainly due to a reduced number of days spent in a hospital or an institution, Opus led to a €24,000 saving per patient over the first five years.
Some 20 years later, 164 (30%) of the trial participants were again interviewed. At this point in time, however, no significant differences were found in the outcomes of both groups.
In a paper published last year, Nordentoft and colleagues said “new initiatives are needed to maintain the positive outcomes achieved after two years… and furthermore improve very long-term outcomes.”
Denmark’s 10-year plan for psychiatry aims to bridge that gap by improving patients’ quality of treatment and life.
Denmark and Ireland have similar population sizes (about 5.9 million compared to 5.3 million). So, is there anything we can learn from their approach to psychiatry?
We technically have our own 10-year plan – Sharing the Vision was published in 2020.
However, as pointed out by the Psychological Society of Ireland (PSI) last week, only three of the 100 policy recommendations have been fully implemented to date.
The PSI wants the mental health budget to be increased to account for 10% of the total health budget, and for it to be given the same level of resources as general health.
One of the major difficulties faced by managers running mental health services in Ireland is the lack of multi-annual funding. Many teams don’t know how much money they will have each year – sometimes midway through the year – so it’s difficult to make plans and hire staff.
In relation to psychosis specifically, €3.68 million was invested in early intervention psychosis (EIP) services from 2015 to 2022.
It’s estimated that around €30 million is needed to set up the extra 20 EIP teams required. As previously reported by The Journal and Noteworthy, at the current rate of investment, that could take over 60 years.
There are currently five EIP teams, at various staffing levels, in Ireland. A sixth adult team and the country’s first CAMHS EIP team, which will see patients under 18, are currently being set up. The HSE did not provide figures when asked how much funding has been allocated to each new team.
“Knowing what funding is available to support the rollout of the EIP teams over 10 years would be extremely helpful,” Dr Karen O’Connor, the HSE’s National Clinical Lead on EIP, told The Journal.
O’Connor acknowledged there are “lots of competing demands” in health, but that EIP is proven to save lives and money.
“Irish and international research demonstrates that EIP is an ‘invest to save’ clinical programme – saving money from the second year of implementation onwards.”
The HSE estimates that €18 is saved for every €1 invested in EIP – due to fewer hospital admissions, fewer suicides, and increased retention in employment and education.
When discussing the fact that certain countries don’t properly fund psychosis services because the conditions related to it are ‘rare’, Nordentoft said more people in Denmark live with schizophrenia than multiple sclerosis.
“You wouldn’t ever make the same argument about MS, ‘that’s not very many people, so they don’t need help’.”
O’Connor said the comparison to MS is a good one because, like schizophrenia, it often has its onset in younger people and involves periods of recovery and relapse.
For some reason there remains a double standard between physical illness and mental illness.
“It would not be acceptable to deny someone with a serious physical illness such as MS, motor neuron disease or cancer access to evidence-based care because the condition isn’t always curable or it’s rarer.”
Each year in Ireland an estimated 1,500 people develop a psychotic disorder for the first time.
O’Connor noted that mental health “receives much more attention” in public discourse than it did in the past. However, she added that this needs to “translate into real, sustained, resourced change”.
“People with psychosis and their families don’t tend to advocate for themselves as prominently as other groups in health might. Many don’t realise that recovery is possible. If they don’t know this, then how can they advocate and demand it?”
*Name changed at interviewee’s request
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Read more articles in this series >>
FALLING THROUGH THE CRACKS
How are inadequate services impacting young people with psychosis?
By Órla Ryan
Over the past number of months, The Journal and Noteworthy explored access to services for people with psychosis and/or schizophrenia in a multi-part series called Falling Through the Cracks.
Supported by the Rosalynn Carter Fellowship for Mental Health Journalism in the Republic of Ireland in partnership with Headline, a Shine programme.
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If you have been affected by any of the issues mentioned in this article, you can reach out for support through the following helplines. These organisations also put people in touch with long-term supports:
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