Source : The Kenny family

Poor investment in psychosis services 'destroying lives', but Ireland can change this

On World Schizophrenia Day, the HSE’s clinic lead in this area says “year-to-year” rather than longer term funding is one of their biggest challenges.

By Órla Ryan

IRELAND NEEDS TO stop “just talking” about mental health and actually invest in vital services, the HSE’s National Clinical Lead on early intervention in psychosis has said.

Dr Karen O’Connor, a consultant psychiatrist, said around €30 million in additional funding is needed to set up the extra 20 early intervention in psychosis (EIP) teams required to meet the current level of demand.

Some €3.68 million was invested in EIP services from 2015 to 2022, but no new funding has been granted since then – despite the fact these teams are proven to save lives and money.

As previously reported by The Journal, at the current rate of investment, it could take over 60 years to set up the required number of teams.

There are currently six EIP teams in Ireland, at various staffing levels. The Journal understands that funding has recently been secured to set up another team, in North Dublin, but the exact details are yet to be finalised. 

One mother whose son has psychosis said the delay some young people experience when trying to access services is “destroying our kids’ lives”. 

Noteworthy, the crowdfunded community-led investigative platform from The Journal, supports independent and impactful public interest journalism.

An EIP team is a multi-disciplinary team led by a consultant psychiatrist. The teams typically include staff from a range of different disciplines with expertise in areas such as mental and physical health, therapy, medication, addiction, and employment and family support.

There are currently five adult teams across Ireland, but not all are fully staffed, and a CAMHS EIP team recently started to accept patients under 18 in the Dublin/Wicklow region.

Speaking to Noteworthy in an interview to mark World Schizophrenia Day, O’Connor said one of the biggest challenges faced by her and her colleagues is the fact their funding is “year to year”.

“I’m tasked with supporting the rollout of this national programme, but I don’t know from one year to another what funding will be available.”

O’Connor said mental health is “really underfunded” across the board in Ireland, not just psychosis services. Her comments are included in the latest episode of The Explainer x Noteworthy podcast, which you can listen to here:

The Explainer · By Noteworthy: Are young people with psychosis getting the help they need?

O’Connor told us it’s “critically important” that people who experience psychosis get timely access to care, but they “tend to come very late to treatment”.

“We started to realise people had psychotic symptoms for two, three years, before they ever got access to care,” she explained. 

The longer the delay is between the onset of the symptoms and you accessing care, the worse your outcome.

“I’ve met people who’ve been psychotic for 10 years and haven’t been able to access care.”

O’Connor said people with psychosis who don’t have access to an EIP team typically end up in the emergency department – often the start of a vicious cycle in terms of their treatment.  

“If that’s your first contact with a mental health service, you won’t be surprised for me to tell you that lots of people do not want to follow up with us afterwards. They’re disengaged.

“So you have this cycle of crisis, disengagement, crisis, disengagement, and that’s not associated with good outcomes. It’s associated with high rates of suicide.”

‘Destroying lives’ 

In our Falling Through The Cracks seriesThe Journal and Noteworthy have explored how young people with psychosis often struggle to access services in Ireland. 

Karin Kenny, whose son Kielan experiences regular psychotic episodes, also features in today’s podcast episode.

Karin Kenny and her son Kielan
Source: The Kenny family

Kielan has a rare genetic condition called 22q, which makes him predisposed to developing schizophrenia. He is also autistic and has cognitive issues. 

The 18-year-old first displayed signs of intense paranoia when he was 12, removing all the posters off his bedroom wall – he thought they were looking at him. 

“He was afraid his teddy bears or whatever were looking at him in the room. So he removed all his toys out of his room,” Karin explained. 

He was getting sick every day before school. He was just very anxious and afraid of everything.

Karin has struggled to get treatment for Kielan over the years, often being referred from one medical team to another due to his complex needs.

“If they had intervened early, if they had intervened when his anxiety issues were [first] showing in 2017, definitely, I don’t think we would be here going through this, because he had a cognitive decline with the onset of a psychotic episode.

So the child we had before 14 is not the child we have today.

“Early intervention is definitely the key. They can’t destroy these kids’ lives just sitting around waiting,” Karin said. 

‘The wrong door’ 

Speaking about Kielan’s situation, Dr O’Connor said there needs to be more integration between services across the health service, in particular when young people turn 18. She said there are “real challenges” in this “transition” phase.

“We know that many young people find that they keep going to the door that they’re told is the wrong door,” O’Connor explained. 

“At 17, you’re a child. At 18, you’re an adult and you have to go into completely different services. But that needs to change because actually, in terms of mental health, that’s when you’re most vulnerable to developing a mental health condition.

O’Connor said a group of people within the HSE are working on this issue, but fixing it will require “very significant investment”.

“We have to do that, that’s an absolute priority,” she added. 

“Ultimately what you want is one door that you go in, and then you can access any of the services that you need behind that one door.”

She said this would include services for psychosis, eating disorders, self-harm and other conditions. 

“We don’t want to keep hearing from families having these awful experiences where they keep getting turned around to the wrong door [because] they didn’t tick the right box, they didn’t say the right words.”

‘It’s just not good enough’

Despite the fact Ireland is a relatively rich country and has a higher life expectancy than many of our European counterparts, we generally invest less in mental health services.

Male life expectancy at birth was 80.5 years in Ireland in 2021, 3.3 years higher than the EU27 average. Female life expectancy was 84.3 years, 1.4 years above the EU27 average.

“If you compare us to other European countries, our life expectancy is above the European average,” O’Connor noted.

“If you compare us, though, in terms of our investment in mental health and our outcomes in mental health, we’re not doing as well in that space.”

She said about 5 to 6% of Ireland’s overall health budget goes into mental health, compared to around 12 to 14% in the UK and Scandinavian countries.

professionalpsychotherapy-femalepsychologisthavingsessionwithmalepatientat The HSE estimates that every €1 invested in EIP results in an €18 saving to the economy (file photo)
Source: Shutterstock/Okrasiuk

“There’s something about us as a society, we need to stop just talking about mental health, we need to actually decide that this is worth investing in,” O’Connor said. 

If we had the evidence that we have around EIP in any other area of physical health, there’d be no doubt that we’d been investing in this.

The HSE estimates that every €1 invested in EIP results in an €18 saving to the economy because it prevents costs related to a person needing prolonged hospital stays and support such as unemployment benefits if they can’t work. 

People who receive early intervention for psychosis are much more likely to recover and stay in, or return to, education or work. 

“We have to invest. The quality that we’re offering people, it’s just not good enough. And if we do that investment, it will really yield a return for us as a society,” O’Connor said. 

‘Huge stigma’

O’Connor said that while mental health is spoken about more openly in general, people with psychosis or schizophrenia still experience huge amounts of stigma.

“People don’t really understand psychosis, they don’t understand serious mental illness, they don’t realise that people can absolutely recover.” 

The majority of people with psychosis still face a “distressing level of discrimination”, according to a new survey released by Shine, Mental Health Reform and the HSE National Clinical Programme for Early Intervention in Psychosis today.

Respondents with personal experience of psychosis “agreed or strongly agreed” that they experienced discrimination in media representation of psychosis (75%), in the workplace (71%), from friends and family (61%) and in their local community (60%). Some 296 people took part in the survey in 2023.

It should be noted that survey respondents were asked to give their perspective on the media generally; no distinction was made between news, documentaries or fictional dramas.

Of the survey participants who managed to receive specialised EIP care, significantly better experiences were reported – 84% said they found it easy to access services, compared to 50% in non-EIP settings.

Seven in 10 respondents (74%) said they relied on general mental health services due to the limited availability of EIP services, which only 26% accessed.

One person who took part in the survey said: “I face a lot of discrimination in the community due to my mental illness and medication side effects. I have no one to go to.”

‘Policies need to be implemented’

The Government’s 10-year mental health strategy Sharing the Vision, which covers 2020 to 2023, recommends greater investment in EIP services, noting they have “the potential to transform the lives of people with emerging or first-episode psychosis”.

O’Connor said there are “lots of really great” things in this plan, but they need to be implemented. 

“The challenge in Ireland is – and this isn’t just Ireland – we have policies that never get translated into implementation. And often there are loads of reasons for that, but one of them is funding.

“If we are really, really serious about improving the mental health of young people and our population, we have to increase our investment in mental health. We have to completely change our attitude to this.

This isn’t something that needs to be behind walls, it’s not something that we can ignore. We can really change this.

When asked if there are any upcoming plans to invest in EIP services, a spokesperson for the Department of Health said developing “high-quality, person-centred, integrated care” is a “key priority” for the Government and Mary Butler, the minister with responsibility for mental health.

They said part of the €10 million in extra funding secured for mental health services under Budget 2024 will go towards posts which will “support” EIP services.

The spokesperson could not provide exact details, saying this information is “currently being finalised”.

Read more articles in this series >>

 

FALLING THROUGH THE CRACKS

How are inadequate services impacting young people with psychosis?

By Órla Ryan

The Journal and Noteworthy are exploring access to services for people with psychosis and/or schizophrenia as part of a wider series called Falling Through the Cracks.

We would like to hear from teenagers and young adults – or their parents / guardians – who have been impacted by the lack of services available to them. Please email orla@thejournal.ie to share your story.

Supported by the Rosalynn Carter Fellowship for Mental Health Journalism in the Republic of Ireland in partnership with Headline, a Shine programme.

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:

  • Shine - 01 860 1610 or 086 040 7701, phone lines are monitored Monday to Friday 9am to 5pm (mental health difficulties including schizophrenia and psychosis, individual and family support)
  • Samaritans – 116 123 or email jo@samaritans.org (suicide, crisis support)
  • Text About It – text HELLO to 50808 (mental health issues)
  • Aware – 1800 80 48 48 (depression, anxiety)
  • Pieta House – 1800 247 247 or text HELP to 51444 – (suicide, self-harm)
  • Teen-Line Ireland – 1800 833 634 (for ages 13 to 19)
  • Childline – 1800 66 66 66 (for under 18s)
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