Around the world, schizophrenia is still widely misunderstood, leading to a lack of research, appropriate treatment, and often, discrimination. For the 24 million people who live with the condition worldwide, a change in attitudes and approach is essential.
Unlike some other conditions, perceptions of schizophrenia are changing very slowly, and around the UK, organisations are working as advocates for this community, demanding more support, understanding and research.
Marjorie Wallace is the chief executive and founder of SANE, a mental health charity originally created in 1986 in response to the neglect of individuals and families affected by schizophrenia and other mental health conditions. The charity aims to raise awareness, offer support, and further research.
“It is as challenging as a physical illness but the research, treatments and therapies aren’t always there,” highlights Marjorie. “These interventions could alleviate some of the anguish and pain experienced by people with schizophrenia, but the brain is something we still know very little about.”
In response to a general lack of understanding and support, SANE set up the first national helpline giving information and guidance as well as emotional support. This is still available today, 365 days a year.
“We have a crisis line open in the evening where people can speak with trained volunteers or professionals to help them through dark times,” highlights Marjorie. “We have a database of information so that we can help people who call from anywhere in the country.”
Each year on 25 July, National Schizophrenia Awareness Day helps put the spotlight on resources like this, but importantly, highlights the challenges faced by people living with the condition and what has to change. At the heart of this change is the need for more research.
“We haven’t had any breakthroughs in the way that other conditions have, especially with medications,” explains Marjorie. “People still have to rely on things such as anti-psychotics.
“There are quite a lot of therapies like committed behavioural therapy for people with schizophrenia, but it hasn’t been proven that this is an effective treatment because there’s no evidence yet.”
Currently, SANE are researching effective interventions and treatments, including the effectiveness of CBD oil in treating people who live with schizophrenia at different stages. The organisation’s facility, The Prince of Wales International Centre for SANE Research, will be the hub for this study, connecting with 35 centres around the world.
“We believe that there should be a huge focus on research: we need to see more pharmaceutical companies take interest, we need better education, because we know that the right medication is really key,” states Marjorie.
Without essential research, currently outdated treatments won’t improve, often leaving people living with schizophrenia and their families with nowhere to turn.
“We need a revolution in how people are treated, people who deteriorate to the point of a psychotic breakdown or become suicidal can’t access help and their families live in fear that they turn up to the hospital and there are no available beds for them,” reveals Marjorie. “I believe this is one of the most distressing conditions known to mankind, and it’s a failure that we are still treating people like it is the dark ages.”
Having a dedicated day to highlight these issues is important, but the fight for more support and better treatments is ongoing throughout the year. Alongside research, there has to be a better understanding of how to help people with schizophrenia in the medical community, and a more effective system to support people in a crisis.
“People in this community can call our helpline or contact someone for emotional support, but from time to time they need to access a safe hospital setting where they can see specialist psychiatrists and trained psychiatric nurses, and right now that element simply isn’t there,” expresses Marjorie. “Support has dwindled while demand has escalated, and we now have very few places where people can get help long-term.”
This has resulted in pressure not only on families, but on the health and social care workforce: a community that is already under extreme stress due to the number of people leaving these careers and a lack of funding to offer appropriate pay.
“We need to dramatically recruit and retain the workforce,” states Marjorie. “Families are getting angry that they can’t get answers, they feel shut out of the circle of information and when they express concerns, they are sometimes ignored.
“We’re dealing with a mental health crisis in many areas, and that means that when someone needs crisis support, they could be driven hundreds of miles away to the first available bed where they don’t know the doctors and their family can’t visit them easily.”
SANE and other support organisations in the UK have continually campaigned for better support, but there also has to be a cultural change to reduce the stigma around the condition.
“We need to give this the same urgency as a physical condition, but we also need to get the message across that there has to be a change in attitudes, people shouldn’t be excluded,” highlights Marjorie. “We need to get the message across that schizophrenia isn’t some sort of failure, these are people who deserve to be treated as equal in society.”
https://enablemagazine.co.uk/calling-for-schizophrenia-research/?utm_source=rss&utm_medium=rss&utm_campaign=calling-for-schizophrenia-research Calling for schizophrenia research – Enable Magazine