Psychosis patients being failed by lack of official data, says carer

Psychosis patients in Northern Ireland are being failed because of a lack of official data on how many people are suffering with the mental health condition.

That is according to Margaret Gibney, a carer for someone who is living with psychosis and is struggling to access the right treatment.

There are no readily available statistics for how many patients are taking antipsychotic medication in Northern Ireland, which Ms Gibney says means people like her loved one do not have "appropriate information to make informed choices about their treatment".

The Department of Health said it was working towards a system which will generate "high‑quality data" aimed at improving outcomes for patients.

Ms Gibney said her overarching experience as a carer is that the local health system is failing those most vulnerable.

"Our service just looks at the symptoms not at the root cause. That takes time and expertise to find out what is going on - it is not just about handing over medication without any sort of follow up," she added.

"We don't have the statistics to show who is taking what medication and even dosage.

"There is a lack of follow-up appointments to see how they are coping.

"Data paints a picture of what's happening in society and Northern Ireland doesn't have that picture."

Often people with psychosis deal with their condition through addiction which means there is a need for a dual diagnosis service, treating the condition alongside any potential addiction.

Psychosis is a mental health condition where someone can lose touch with reality, involving symptoms like hallucinations and delusions.

It can make it difficult for someone to tell what is real and what is not.

Psychosis can be a temporary episode or part of longer-term mental health conditions.

Patients can be supported and treated with a mix of antipsychotic medications, talking therapies and family support.

The group New Script for Mental Health says it is trying to build a better understanding of and approach to mental health in Northern Ireland.

Its spokesperson, Lisa Morrison, said the lack of available statistics is a form of "neglect" of people with mental health challenges.

"We don't have monitoring figures including how many are taking medication for psychotic behaviour, the effectiveness of that medication and crucially what is available for people apart from medication," she said.

In England an antipsychotic prescribing report is published each quarter, meaning health organisations there can share information about the impact of the medication and who in the community requires follow-up appointments.

Ms Morrison described the lack of that type of data in Northern Ireland as "unacceptable".

She added that it makes it: "Difficult to assess anything about the prevalence, the impact of and the range of services out there to support men and women dealing with psychosis".

Ms Gibney said for her loved one, the risk is life and death as their psychosis means they can be reliving the most distressing moments of their life day in and day out.

"To be living in that horror is so distressing that so many do often take their own life."

"Having a choice in their type of treatment isn't necessarily there for them," she said.

"We are too quick to reach for medication, it has been the only offer on the table for my loved one. Medication doesn't always work and when nothing else is on offer people are left in a hopeless and desperate state."

Ms Gibney said hospital stays can often result in more trauma for psychosis patients and that services and support teams need to intervene sooner and when people are at home.

Specific data on the number of people waiting solely for psychosis treatment is not available publicly, as official Department of Health statistics are typically gathered for general mental health services or by specific types of appointments like psychological therapies.

But it is known that thousands people are waiting for general mental health services, with some waiting up to seven years for treatment.

In the first quarter of this year, more than 5,700 adults were waiting for their first mental health appointment.

The true total is likely higher as data was unavailable from all health trusts due to the roll-out of a new electronic patient record system called Encompass.

In December 2023, about 6,500 people were waiting to access psychological therapies, with approximately three-quarters of them waiting longer than the 13-week target time.

None of the mental health waiting time targets have been met in Northern Ireland in recent years.

In a statement, the Department of Health said its "mental health strategy commits to the implementation of a regional outcomes framework to improve service design, delivery, and accountability".

It added that is "well advanced" and is happening through the embedding of mental health outcome measures within the new Encompass system.

"This is key to ensure consistent implementation across all health trusts, which will allow Northern Ireland to generate comparable, high‑quality data supporting improved outcomes for service users."