Welcome to a brief update of the carer forum for Southwark & Lambeth. The forum is facilitated by Matthew McKenzie, carer activist and author. The online carer led group runs once a month.
Quick recap
matthew, a carer activist, discussed the purpose of his online groups aimed at those caring for someone with a mental illness. There was also updates from a project to improve the Trust’s understanding of service users’ and carers’ experiences. The project, co-produced with service users and carers, collects stories to report back to the Trust’s Executive board and directorates, with a focus on improving services for people, particularly in mental health. The last presentation from Matthew McKenzie also discussed the challenges of navigating the mental health system, the importance of self-education and support networks, and the need for better engagement with mental health providers.
Carer Activist Groups and Service Improvement
Matthew, a carer activist, discussed his online groups for carers of individuals with mental illness in Lambeth and Southwark, aiming to tackle carer stigma and improve services. Debora, a Lead Commissioner Officer, joined the meeting as matthew spoke about his work on a book featuring carers’ stories.
We then had Morgan, present a project to improve the Trust’s understanding of service users’ and carers’ experiences. The project, co-produced with service users and carers, collects stories to report back to the Trust’s Executive board and directorates. matthew raised concerns about potential stigma and repercussions for carers sharing their stories, which Morgan addressed by emphasizing anonymity and confidentiality.
Initiative Discussion and Story Collection Project
After Morgan’s presentation, Matthew initiated a discussion about an initiative, seeking feedback and questions from the attendees. Morgan clarified that the project, originally set to end in November, had received additional funding from the Maudsley charity and was now extended till the end of September next year. The project aimed to improve services for people, particularly in mental health, by collecting stories from service users and carers. Morgan explained that the stories could be collected in various environments, including private rooms at libraries or community centers, to ensure comfort for the storytellers. The project also offered a £15 voucher for those sharing their stories. Morgan encouraged those interested in collecting stories to contact them via email. matthew then proposed to distribute the project details to his mailing list and Whatsapp groups. The conversation ended with matthew setting the scene for the next part of the discussion, which would involve sharing personal experiences and allowing carers to seek advice from the group.
More details on sharing your story below.
Navigating Mental Health System as a Carer
matthew moved on to discuss the complexities of navigating the mental health system as a carer, emphasizing the importance of understanding one’s rights and the need for education in accessing mental health services. He shared his personal experiences as a carer for his mother with schizophrenia and his brothers with autism, and mentioned his role as an author, having written several books including working on his new book “Telling Your Story as a Carer“.
He also touched on his interest in poetry as a means of sharing difficult experiences. A carer member of the group defined navigating the mental health system as trying to get the best services in place for a loved one, knowing what services are available and implementing them. Another carer shared her personal experience of struggling to get her loved one recognized as unwell, which led to a difficult situation. The discussion aimed to educate the group members about the challenges and strategies involved in navigating the mental health system.
Navigating Mental Health Challenges and Support
A carer shared her experiences with her loved one’s mental health and the challenges she faced in accessing appropriate care, emphasizing the importance of a good General Practitioner (GP) and social worker. matthew agreed, highlighting the need for better support and guidance for carers. One carer discussed the challenges faced by their son in accessing mental health services, expressing frustration at the lack of support from their GP and the single access point.
Matthew Mckenzie then moved on to discuess the challenges faced by families and carers in navigating the mental health system, suggesting that the system should focus more on the families and carers. matthew emphasized the importance of understanding specific mental health conditions and the need for better education and support for those navigating the mental health system.
Effective Caregiving Strategies and Support Network Building
Matthew McKenzie emphasized the importance that carers work on self-education on medical conditions and treatment options, understanding the healthcare system, and building a support network. This needs support from professionals, but the more carers learn, the better.
He stressed the need for effective communication during appointments, the significance of care plan meetings, and the potential need to change GPs if communication is not effective. matthew also highlighted the financial aspects of caregiving, the importance of planning for emergencies, and the need for self-care. He encouraged caregivers to seek support from others and stay informed about upcoming healthcare policy changes. matthew plans to attend a session at Parliament to raise awareness of the group’s challenges and influence policy.
Navigating Mental Health System Challenges
Matthew discussed the challenges of navigating the mental health system, emphasizing the importance of understanding the roles and time constraints of various professionals. He suggested the use of local counselors as a potential resource and highlighted the role of organizations such as the Care Quality Commission and Integrated Care Boards in ensuring good value for money and meeting patient and carer needs.
Matthew also stressed the need for support for carers and the importance of lobbying and engaging with organizations like Patient Opinion and HealthWatch. He urged attendees to share their experiences to bring about change and not to isolate themselves. A carer shared her positive experience with a mental health provider and advised others to research and choose the right GP practice and doctor. matthew agreed, highlighting the value of support groups and mental health advocates. He expressed concerns about the lack of support from local mental care providers, but also stressed the need for better engagement with them.
Carer Awareness and Advocacy Discussion
Matthew McKenzie then discussed his experiences as a carer and his efforts to raise awareness about carers’ issues. He mentioned his involvement in various groups and his plans to share his insights on his YouTube channel.
Matthew also emphasized the importance of carers being identified and registered, and he encouraged the group to lobby for their rights. He mentioned an upcoming event with the MP and encouraged the group to attend. matthew also shared resources and promised to send a PDF summary of the meeting to the attendees. He ended the conversation by expressing his gratitude and wishing everyone well.
A Caring Mind 