Findings from the national survey on the experiences of those living with psychosis

National survey findings highlight lack of specialised supports and significant experiences of stigma for those living with psychosis.

Findings from a national survey carried out by Shine, in partnership with Mental Health Reform and the HSE National Clinical Programme for Early Intervention in Psychosis, aimed at gathering information from people with lived experience of psychosis and their family members and supporters, showed significant gaps and highlighted areas for improvement in the provision of dedicated and specialised support services for those living with psychosis. This first-of-its-kind survey in Ireland provides a platform for us to hear first-hand what it is like to experience and seek care for psychosis in Ireland.

The findings of this survey indicate that there are notable differences in the experiences of people attending an Early Intervention in Psychosis (EIP) service compared to those attending a non-EIP team or receiving support through general mental health services. 91% of people who had access to an EIP team reported access to services was ‘easy’ or ‘very easy. However, where people did not have access to an EIP team, only 26% found access to care ‘easy or ‘very easy. Those who accessed EIP (60%) spoke of the positive impacts of having a dedicated keyworker and support from a fully specialised team (43%) as being essential components in their recovery. Respondents referenced the importance of being listened to, understood and supported.

Over 42% of family members and supporters indicated that an increase in dedicated support for those supporting a friend or family member living with psychosis is crucial. Those who participated in family support groups, recovery education, psychoeducation programmes and peer support (through voluntary organisations and programmes such as Shine), praised the benefits of such support to enable them to accompany loved ones in their recovery journeys and jointly gain confidence to manage their lives. In EIP services, 86% reported access to family psychoeducation/ intervention in mental health services, compared to 4% in non- EIP services.

48% of people with self – experience of psychosis called for an increased availability of psychological interventions and alternative therapies for psychosis, such as Cognitive Behavioural Therapy (CBT) to enable them to develop a better understanding of their situation and to support them to take control of their recovery. In EIP services, 95% had access to CBT for psychosis, while this was only 14% in non-EIP services. Those who had access to an EIP team identified the CBT as very helpful and supported their recovery.

One of the key findings from the survey was the significant role that voluntary and community organisations play in providing support to people with self-experience of psychosis and their family members and supporters. Over 40% of all people surveyed had accessed support through Shine with 26% of family members mentioning Shine as the only organisation that they received support in relation to psychosis.

Within national conversations around mental health, the voice of those that experience psychosis and their families and supporters is often under represented. Fear, shame and lack of public education and awareness about more complex and severe mental health difficulties, creates a barrier to speaking out, meaning that psychosis remains a highly stigmatised and rarely spoken about experience. The findings of this survey put the extent of this experience of discrimination into sharp focus.

73.2% of respondents with personal experience of psychosis reported experiencing stigma and discrimination related to their mental health. The highest percentage of participants, 83.2%, reported experiencing stigma through media representation of psychosis, while 73.2% reported experiencing stigma in the workplace. Participants also experienced stigma within their local communities and among family and friends. 55% of survey respondents called for increased awareness and education among the Irish public and within general health services, on more complex mental health issues such as psychosis.

Nicola Byrne, CEO of Shine said; “International evidence has shown that people who experience psychosis deserve and need dedicated, specialised supports and services. We need to demand that current treatments are not good enough and more needs to be done, at a quicker rate, to support people experiencing psychosis”

Patricia McKeever, Regional Mental Health Team Leader with Shine said; “Shine continuously seeks opportunities to raise the voice of individuals and family members who have experiences of psychosis. It is only through asking people about their experiences can we discover strengths and gaps in service provision. Psychosis, as a mental health experience, is not widely understood. People face stigma and discrimination across all aspects of their life, so it was not easy for many of the respondents to speak out. We will continue to work to improve the supports available for individuals and family members who have experience with psychosis.”

National survey on the experiences of those living with psychosis

As our government prepares for Budget 2023, Shine in partnership with Mental Health Reform and the HSE National Clinical Programme for Early Intervention in Psychosis, wants to hear the voice of people affected by psychosis to support our call for increased funding for improved specialised psychosis supports nationally.

In our national conversations around mental health, the voice of those that experience psychosis and their families is under represented and often not heard. We understand the concern and fear affecting those who have experiences with psychosis and how it presents a barrier to speaking out. However, it means that psychosis remains a stigmatised and rarely spoken about experience.

International evidence has shown that people who experience psychosis deserve and need dedicated, specialised supports and services. We need to demand that current treatments are not good enough and more needs to be done, at a quicker rate, to support people experiencing psychosis.

Have you, a family member or friend, an experience of living with psychosis? If so, we want to hear from you. Please take our survey and have your voice heard.

The survey will remain open until 5pm on Friday 12th August.

Thank you

Shine Pre-Budget 2023 Submission

With the planning and discussion for the Budget 2023 happening, Shine as an organisation wanted to ensure that the voices and needs of the people who use and need mental health supports and services will be heard.

For this reason, last week, we shared a survey asking people with lived experience of mental health challenges, family members and supporters, and individuals delivering mental health services, to share their ideas and demands for improved mental health services.

We are grateful to everyone that took the time to complete the survey. We have now compiled the messages we received into a letter that we sent this morning to the following ministers:

  • Minister for Mental Health and Older People, Mary Butler
  • Minister for Finance, Paschal Donohoe, TD
  • Minister for Health, Stephen Donnelly
  • Minister for Public Expenditure and Reform, Michael McGrath

You can read our full submission to the government here:

Shine Pre-Budget 2023 Submission to Government

Webinar: “Speaking Words” Book Launch Recording

On Wednesday, 18th May 2022, we had the official launch of the “Speaking Words” book, an anthology of written work centred around social isolation. The entire collection is penned by people that used Shine services throughout the Covid-19 lockdowns. The book also includes photographs taken by Dublin Resource Centre Photography Club.

As we had people submitting work from all over Ireland, we felt it was best to do an online event. This way anyone in Ireland could attend it. We recorded the launch for those who missed it or wished to watch back on the event.

Watch the recording here

We thank all the speakers at the launch, which included:

– Nicola Byrne, Shine CEO

– Mary Cregan, author of “The Scar: A Personal History of Depression and Recovery.”

– Patricia McKeever, Shine Resource Centre Team Leader

– Malachi McCoy, Coordinator of Shine Dublin Resource Centre

 

We also thank everyone that made this book possible, from all of the writers and photographers, to all the Shine staff involved, author Brian Keenan, as well as to the graphic design and video production companies.

Shine Recovery Fund 2022: Applications Now Open!

What is the Shine Recovery Fund?

The purpose of the Shine Recovery Fund is to facilitate a person with self-experience of mental health challenges to achieve some aim, which may be an educational, recreational or social activity that requires some funding to help him/ her achieve this purpose.

Applications must be for a recognised project where there is a clear need and benefit from undertaking it. Examples of projects, which might be supported include:

  • Part or full payment of educational or training course fees.
  • contribution towards the development of a creative or artistic project.
  • contribution towards participation in a recreational activity.
  • contribution towards the purchase of an item which may assist the person in a creative, educational or work activity (excludes purchase of mobile phones, games consoles, holidays)
  • contribution to a project which enhances the person’s employment, self-esteem or presence in the community.

Conditions of application:

  • Applications will only be accepted from individuals who are Shine members, volunteers, ambassadors, someone who attends Shine’s groups/training programmes or use our services. Applicants should provide the name of Shine staff member in application form who can confirm that they are familiar with the applicant.
  • Applications will only be accepted from the individual seeking and benefiting from the funding applied for. We do not accept applications from organisations or mental health professionals on behalf of individuals
  • The maximum amount that can be applied for is €500.
  • Application forms must be typed if possible or if not, writing should be legible in block capital letters.
  • Applications must be accompanied by a quote/ full details of the funding being requested.

Individuals who received funding in 2021 cannot apply for funding in 2022. Shine receives many applications for the Recovery Fund and have limited funding, so this is to ensure fairness and that as many people as possible can benefit from funding

If you wish to apply for the Shine Recovery Fund, please fill out the Shine Recovery Fund Application Form.

Please read the Shine Recovery Fund Privacy Statement.

Applications close 5pm on Thursday 26th May 2022

Headline Mental Health Media Awards 2019

We would like to extend heartiest congratulations to all the winners and shortlisted nominees at the Headline Mental Health Media Awards 2019. It was a wonderful emotional afternoon full of laughter, celebration and tears.

We were so honoured to have so many people in the room dedicated to safe, compassionate reporting and a desire to create an open discussion on mental health in the media.

The awards recognise and celebrate stories that breakdown stereotypes, engage audiences and enhance the public’s understanding of mental health issues. Winners announced on www.headline.ie

Your Mental Health 24/7 Mental Health Information Line

Shine welcomes the new Your Mental Health Information Line launched today by yourmentalhealth.ie, An Taoiseach Leo Varadkar, the Minister for Health, Simon Harris,TD and the Minister for Mental Health and Older People, Jim Daly, TD.

The Your Mental Health information line is a confidential, 24/7 Freephone service that provides signposting to mental health supports and offers information on how to access services provided by the HSE and funded partners across the country.

FRIENDS National Development Training Invitation

Shine is facilitating training and planning for key stakeholders to explore the development of sustainable collaborations to advance family recovery.

AIM of the 3 Day Training
To provide shared learning and knowledge of sustainable processes rooted in Family Recovery and Family Recovery Peer Support

When: 20th, 27th November, 15th January 10:00AM – 4:00PM
Venue: Maldron Hotel, Portlaoise, Co. Laois
Who: Mental Health Professionals, Family members supporting people with self-experience of mental health and Shine regional staff

Click here for more information