An exciting new research opportunity for Caribbean heritage dementia carers. Feyi Abraham a PhD student researcher at London Metropolitan University is looking for carers to share their experiences.
Please view the poster below or contact fer0077@my.londonmet.ac.uk for more details.
Welcome back to another blog post from carer activist Matthew McKenzie. I am involved in quite a few things to raise awareness of unpaid mental health carers. One of them is Carers Trusts Triangle of Care Framework.
Triangle of Care is a framework developed to improve collaboration between mental health services, service users (patients), and carers. It was created by the Carers Trust in the UK, focusing on involving carers (family members or friends who support individuals with mental health issues) in care and treatment decisions, while ensuring they receive the support and recognition they need.
We have many mental health trusts who are members of the Triangle of Care. One of them is Avon and Wiltshire Mental Health Partnership NHS Trust or AWP for short.
Avon and Wiltshire Mental Health Partnership NHS Trust (AWP) is the lead provider of healthcare for people with serious mental illness, learning disabilities and autism across Bath and North East Somerset (BaNES), Swindon and Wiltshire, and Bristol, North Somerset and South Gloucestershire.
With support from Laura Sheridan who leads on carers at Cygnet. We both attended and supported the event at the mental health partnership trust. I took the time to explore the wonderful area of Bristol. Everyone I met was welcoming and friendly.
AWP have taken up the challenge to implement the Triangle of care and listen to carers. One of the best ways to listen to carers is through engagement and celebration events.
So on Thursday 3rd of October Avon and Wiltshire Mental Health Partnership NHS Trust (AWP) ran their #LetsHearCarers event. The event was held over at Somerdale Pavilion, Keynsham.
The day started off with a welcome from Sarah Jones, Director of Nursing and Quality at AWP.
We then got to hear from Ayesha Ahmed-Mendoza on the Black2Nature campaign to enable minorty ethnic children to have better access to nature camps. Next I was impressed with the presentation from Elaine Bennett regarding experiences of deaf carers.
Then we had the panel of carers giving their experiences of involvement at the NHS trust. I personally feel involvement of carers shaping services is a powerful way of allowing carers to have their say.
After the break, we got to hear from Debbie Hustings who is the new Triangle of Care lead for Carers Trust. Debbie used to be the former NHS England carers lead for London and has a wealth of experience when it comes to unpaid carers. Debbie presented on carers rights as she presented with her carers hat on. Next there was a comedy session from Angie Betcher who is a comedian at Bristol university, she is also skilled as a poet as well as a comedy performer.
Next was Lunch and workshops to cater for the wellbeing of carers who attended.
Have lunch I was up to read out 2 poems. One of the poems you can see from Avon and Wiltshire Mental Health Partnership NHS Trust’s video of the carer event below.
After more performances and networking with carers, I headed home. I would like to thank Avon and Whiltshire for the excellent event they put on for the community. Everything was planned brilliantly and I did not hear any grumbling from carers. I look forward to more events in future.
Welcome to another deep dive into the pressing issues faced by unpaid carers, brought to you by Matthew McKenzie, a dedicated carer activist. In today’s discussion, we confront the grim reality of how poverty exacerbates the struggles of unpaid carers.
If you want to see the short video version of this blog post, watch below
These unsung heroes often sacrifice their personal well-being to look after loved ones. However, when poverty is added to the equation, the challenges they face multiply exponentially. Throughout this article, we will explore various dimensions of the caregiving crisis, touching upon financial hardships, mental and physical health issues, social isolation, generational poverty, and more. The goal is to raise awareness and advocate for targeted support systems that can alleviate these burdens.
Many unpaid carers find themselves in a predicament where they have to reduce their working hours or quit their jobs altogether to provide adequate care for their loved ones. This significant drop in income makes it difficult to meet everyday expenses, let alone the additional costs that caregiving entails, such as medical supplies and transportation.
It is troubling to note that many carers are unaware they might qualify for financial aid or benefits. This lack of awareness leaves them in a precarious financial situation, struggling to make ends meet.
Balancing caregiving responsibilities with financial insecurity takes a severe toll on mental health. Chronic stress, anxiety, and depression become constant companions for many unpaid carers. This emotional strain can lead to a devastating cycle of mental health issues that are hard to break.
Due to their all-consuming caregiving duties, many carers neglect their own physical health. They often face barriers to accessing healthcare, making it nearly impossible to afford basic medical services. This neglect further compounds their stress levels and deteriorates their overall well-being.
Imagine being on duty 24/7 with no opportunity for a break. The inability to afford respite care leads to inevitable burnout. This constant state of exhaustion further compromises the carer’s ability to provide quality care.
Poverty significantly limits social interactions for carers. The costs associated with transportation and social activities create barriers that are hard to overcome. Consequently, many carers find themselves socially isolated, worsening their emotional well-being.
The social isolation is often compounded by feelings of shame and stigma related to their financial situation. These feelings make it even harder for carers to seek help, exacerbating their sense of loneliness.
When resources are limited, carers struggle to provide the best possible care for their loved ones. This situation often leads to feelings of guilt and distress, knowing they cannot do more. The quality of care inevitably suffers, affecting both the carer and the care recipient.
Stress and burnout diminish the emotional availability needed for providing quality care. When carers are overwhelmed, they cannot offer the emotional support that is crucial for the well-being of their loved ones.
Generational poverty is another facet of this issue. Many carers look after older family members who have also faced financial hardships, creating a cycle of poverty. This intergenerational strain further depletes already limited resources, especially in households where young carers are involved.
Financial constraints and time demands make it incredibly challenging for carers to pursue education or training. Job flexibility is rarely an option, making it difficult for carers to find or keep employment. These barriers hinder their ability to break free from the cycle of poverty.
Emotionally, carers often carry a heavy burden of guilt and stress. Feeling inadequate or ashamed of their financial situation adds to a sense of hopelessness. The constant worry about bills, care, and personal needs can lead to overwhelming exhaustion.
Navigating the complex systems for financial aid and support is another layer of stress. The time and energy required to deal with bureaucratic hurdles can be overwhelming, adding yet another burden to the already strained carers.
Many carers face the grim prospect of poverty in their old age, having sacrificed their careers and savings to provide care. Chronic stress and poor health further reduce their life expectancy and quality of life.
Poverty significantly amplifies the struggles of unpaid carers. To improve their well-being, there is a pressing need for:
By shedding light on these critical issues, we can advocate for changes that will make a tangible difference in the lives of unpaid carers. Let’s work together to ensure that these unsung heroes get the support they desperately need.
Remember to take care of yourselves, and for more insightful discussions, please like, share, and subscribe. God bless.
Welcome to another blog post off my carer and mental health website.
Caring for a loved one is a profoundly rewarding experience, but it can also be an incredibly challenging journey. The role often comes with feelings of isolation and overwhelming responsibility.
Fortunately, networking with fellow caregivers can make a significant difference in the lives of unpaid carers. Connectivity fosters emotional support, practical advice, resource sharing, community building, resilience, and even advocacy. In this article, we’ll explore the importance of networking for unpaid carers and how it can enrich their caregiving journey.
Video Version
To watch a brief video of the blog please view the video below
One of the most significant benefits of networking is emotional support. Caring for a loved one can often feel isolating, and the weight of responsibilities can be heavy. Connecting with other caregivers who truly understand your experiences can lighten this emotional load. Sharing your stories, challenges, and triumphs with those who “get it” provides comfort and a sense of belonging. Knowing you are not alone in this journey can significantly improve mental health and resilience.
Networking allows carers to exchange invaluable tips and strategies. Each caregiving situation is unique, but many challenges are universal. Experienced carers can offer practical advice on managing specific conditions, navigating healthcare systems, or handling day-to-day tasks. This shared knowledge acts as a collective wisdom pool, making the caregiving process more manageable for everyone involved.
In addition to practical advice, networking facilitates the sharing of resources. Information about local services, support groups, and community resources can be invaluable. Imagine having a treasure map that leads you to various forms of support tailored for carers—this is what resource sharing can achieve. These exchanges can lead to discovering programs, grants, respite care options, and other services that ease the caregiving burden.
Establishing connections with other caregivers fosters a sense of community and belonging. In many ways, caregiving can be a lonely journey, but community building changes this narrative. Community groups provide a space where carers can interact and engage in meaningful conversations. For example, caregiver groups run locally can offer a support system where members can share experiences, support each other, and even socialize. Such communities act as pillars of strength for carers, reinforcing that they are part of a larger, caring network.
Resilience is a necessary trait for carers. The demands of caregiving require constant adaptation and emotional strength. By networking, carers can learn effective coping strategies from one another. These shared strategies can empower carers, building their resilience and enhancing their ability to provide care. Learning from others’ experiences offers new insights and techniques, reinforcing the carer’s own skills and capacities.
When caregivers come together, their collective voice becomes stronger. Networking can boost advocacy and awareness of the issues that matter most to carers. Advocacy can lead to policy changes, more resources, and greater recognition of the challenges faced by carers. Whether it’s campaigning for more support services or raising awareness about the realities of caregiving, a united front can make a substantial impact.
Together, caregivers can amplify their voices to influence change. Advocacy efforts become more effective when carers unite. These collective efforts can bring about policy changes, increased funding for caregiving resources, and greater public awareness of the importance of supporting unpaid carers. By networking and working together, carers can drive systemic changes that benefit the entire caregiving community.
Consider joining or forming caregiver support groups in your local community or online. These groups create a space for regular interactions, exchanges of advice, and mutual support. You might want to check out the carer forums I run off my website.
Workshops, seminars, and conferences are excellent opportunities to meet other carers and professionals in the field. These events often provide both educational content and networking opportunities.
Social media platforms can also serve as networking tools. Joining caregiver groups on platforms like Facebook or participating in Twitter chats can connect you with a broad community of caregivers worldwide.
Local nonprofits and organizations often have resources and networks specifically designed for carers. Engage with these entities to tap into their resources and support networks.
Online forums and communities, such as Reddit or specialized caregiving forums, allow for the exchange of advice, experiences, and support. These platforms can be especially beneficial for those who may not have access to local groups. I even utilise Whatsapp to provide a network for carers to connect.
Healthcare providers often have connections to support groups and resources for carers. Don’t hesitate to ask your loved one’s doctor or nurse for referrals to local or online caregiver networks.
Keep a list of contacts that you can reach out to for different types of support. This can include other carers, healthcare professionals, and service providers. A well-maintained list can be a quick reference for resources and advice when needed.
Networking for unpaid carers is more than just a beneficial activity—it’s a necessary lifeline. Emotional support, practical advice, resource sharing, community building, resilience, and advocacy are some of the many advantages that come from connecting with fellow carers. By fostering these connections, carers can significantly enrich their caregiving experience and improve their well-being and the quality of care they provide. Remember, you are not alone in this journey. Reach out, connect, and together, we can create a supportive and empowered caregiving community. Take care!
Welcome to another blog post from carer activist Matthew McKenzie for World Mental Health Day 2024.
On October 10th, the world comes together to observe World Mental Health Day, a day dedicated to raising awareness around mental health issues and mobilizing efforts in support of mental well-being. Established by the World Federation for Mental Health in 1992, this day serves as a crucial reminder for governments, organizations, professionals, and individuals to advocate for mental health awareness and promote positive mental health practices.
World Mental Health Day shines a global spotlight on mental health issues, encouraging open and honest conversations about mental health. Breaking down the stigma surrounding mental illness is a key aspect of this day. When mental health is discussed openly, it becomes easier for people to seek help and support. This not only includes individuals struggling with mental health conditions themselves but also those who care for someone facing these challenges.
A fundamental focus of World Mental Health Day 2024 is advocacy for mental health care. This year’s theme, “Mental Health at Work,” highlights the importance of access to quality mental health care for everyone, regardless of their location or financial situation. Ensuring that everyone has the opportunity to get the help they need, even in the workplace, is a critical message being communicated globally.
Education plays a massive role in World Mental Health Day. Many organizations use this opportunity to host events, discussions, and seminars aimed at educating the public about mental health issues, their symptoms, available treatments, and the importance of having a solid support network. Knowledge truly is power, and understanding mental health can significantly improve how we support ourselves and others in our communities.
The theme for World Mental Health Day 2024, “Mental Health at Work,” emphasizes the need for safe and healthy working environments that protect our mental health. This powerful message reinforces the notion that mental health care should be available to everyone and that no one should face barriers to access due to stigma, geography, or financial constraints.
From World Mental Health Day 2024, there are several essential messages we should embrace:
Around the world, communities and organizations celebrate this day in various ways. Hosting events, running campaigns, and participating in activities such as mindfulness workshops, mental health seminars, and workplace initiatives aimed at supporting mental wellness are some approaches taken to mark the occasion. These activities not only raise awareness but also foster a supportive community environment.
World Mental Health Day 2024 is not just a day on the calendar but an opportunity to create lasting positive changes. By continuing the conversation about mental health, advocating for accessible mental health care, educating ourselves and others, and supporting workplace mental health initiatives, we can help ensure that mental health matters.
In conclusion, as we observe World Mental Health Day, let us commit to making mental health a priority in our lives and communities. By doing so, we honor the fundamental principles of this day and contribute to a world where mental health is recognized, understood, and supported.
Thank you for reading. Remember to take care of yourselves and each other. To watch the video version see the video below.
Welcome to another blog post on carer / caregiver awareness from carer activist Matthew McKenzie. To see the video of this blog post, watch below.
Caring for a loved one is often a rewarding experience filled with deep connection and personal satisfaction. However, it can also become overwhelming, exhausting, and challenging. Acknowledging that you need help is a crucial step in providing the best care for both your loved one and yourself. Here, we’ll explore 10 important signs that indicate it may be time to ask for help in your caregiving role.
Caregiving involves juggling numerous responsibilities, which can lead to constant stress and anxiety. If you often feel like you’re unable to cope, it’s a clear indication that you need support. Feeling overwhelmed is not a sign of weakness; it’s a human response to a heavy load. Remember, it’s perfectly okay to ask for help and share the burden.
The physical demands of caregiving can be immense. Lifting, moving, and assisting your loved one can take a toll on your body. If you find yourself frequently fatigued, or if you experience chronic pain or other health issues, it’s important to seek help. Ignoring these symptoms can lead to caregiver burnout, which ultimately benefits no one.
Caregiving can also be emotionally taxing. Signs of depression, irritability, or frequent mood swings may indicate that you need emotional support. Friends, family, or professional counselors can provide the necessary outlet for your feelings and help you manage the emotional strain that comes with caregiving.
Your loved one’s condition may worsen over time, increasing their care needs. When this happens, don’t hesitate to ask for assistance. Professional help can be crucial during periods of significant change, ensuring your loved one receives the best care possible while you adapt to new demands.
It can be easy to lose sight of your own health, relationships, and hobbies when you’re focused on caregiving. However, neglecting your personal needs can lead to serious health and emotional issues. Seeking help can give you the space to take care of yourself, restoring balance and allowing you to be a stronger caregiver.
Feeling lonely or disconnected is a common experience among caregivers. This isolation can exacerbate stress and make the caregiving role even more challenging. Reaching out for support, whether from family, friends, or caregiver support groups, can help you reconnect and remind you that you’re not alone in this journey.
In times of emergency or when faced with making tough decisions about your loved one’s care, seeking help is essential. Attempting to navigate these moments alone can be risky. Professional advice and support can provide the guidance you need to make the best possible decisions during a crisis.
Caregiving often involves tasks that require specific knowledge or skills, such as medical care or managing medications. If you encounter tasks you’re unsure how to handle, it’s crucial to seek guidance. Professional help can ensure that these tasks are performed correctly, safeguarding your loved one’s health.
Maintaining a consistent daily routine is vital for both you and your loved one. If you find that daily routines are regularly disrupted and you’re struggling to manage time, consider asking for assistance. A little help can go a long way in restoring structure and reducing stress.
Everyone needs a break occasionally. If you feel the need to take time for self-care or to recharge, don’t hesitate to ask for help. Whether this comes from family, friends, or respite care services, taking the time to rest is essential for maintaining your well-being and being an effective caregiver.
Recognizing and acting on these signs doesn’t mean you’re failing as a caregiver; it means you’re taking necessary steps to ensure the best care for your loved one and yourself. Asking for help is an act of strength and responsibility. Take the initiative today to reach out and seek the support you need in your caregiving journey.
Welcome back to another blog post from carer activist Matthew McKenzie. Did you know it is ADHD Awareness Month?
To watch the video of the blog, please view below.
Attention Deficit Hyperactivity Disorder (ADHD) affects millions of individuals worldwide, impacting not only those diagnosed but their families, friends, and caregivers. ADHD is characterized by symptoms of inattention, hyperactivity, and impulsiveness, which can significantly impair daily functioning in various spheres of life, including school, work, and relationships. Every October, ADHD Awareness Month is observed to shed light on this condition, promote understanding, and advocate for better support systems. The theme for 2024 is “Awareness is Key,” emphasizing the importance of knowledge in fostering support and empathy.
One of the most crucial steps in supporting someone with ADHD is to educate yourself about the condition. Understanding ADHD, its symptoms, and its challenges can foster empathy, patience, and a supportive attitude. Knowledge truly is power. The more you know about ADHD, the better equipped you are to provide the necessary support. This includes learning about common behaviors, the impact of ADHD in daily life, and effective management strategies.
Families, schools, and workplaces should prioritize awareness and education about ADHD. Regular training sessions, workshops, and informational resources can significantly improve how people understand and interact with those affected by ADHD. When communities are informed, they can collectively create more supportive environments.
Establishing routines and daily schedules offers predictability and stability for individuals with ADHD. Structure can provide a sense of security, helping to manage time more effectively and reduce feelings of overwhelm. Visual aids such as calendars, planners, or to-do lists can be extremely helpful in keeping track of tasks and responsibilities. These tools can serve as constant reminders and help individuals prioritize their actions.
Regular short breaks are crucial during tasks. These breaks allow individuals with ADHD to recharge and maintain their focus. It’s not about working less, but about finding a balance that promotes productivity and reduces fatigue. Identifying the optimal schedule for breaks can make a significant difference in performance and overall well-being.
When giving instructions to someone with ADHD, it’s important to be concise and specific. Using clear and simple language, avoiding unnecessary details, and breaking tasks into smaller, manageable steps can make a huge difference. This approach ensures that instructions are understood and followed more easily, leading to better outcomes.
Creating a calm and focused environment is paramount. Reducing noise, limiting visual distractions, and providing a quiet space can significantly improve the ability of individuals with ADHD to concentrate. Environmental modifications might include soundproofing a room, using noise-canceling headphones, or setting up a dedicated workspace that is free from interruptions.
Personal stories are incredibly powerful in understanding ADHD. Hearing from individuals with ADHD and their caregivers can provide valuable insights and foster empathy. These stories highlight the real-world challenges and successes of living with ADHD, offering practical advice and hope.
This ADHD Awareness Month, let’s commit to raising awareness and advocating for those with ADHD. Small actions, such as sharing information, participating in community events, and supporting advocacy groups, can lead to significant changes. Community engagement helps build a support system that is informed, compassionate, and proactive.
Supporting ongoing educational campaigns and providing resources can help spread awareness and understanding. Schools, workplaces, and community centers can play a pivotal role by organizing seminars, distributing literature, and facilitating support groups.
ADHD Awareness Month serves as a crucial period for promoting understanding and support for individuals with ADHD. By educating ourselves, creating structured and supportive environments, and listening to personal stories, we can become better allies. Let’s take this opportunity to make a positive impact. Awareness indeed is key—it opens doors to empathy, effective support, and advocacy.
If you found this content helpful, consider sharing it to spread awareness further. By working together, we can make a significant difference in the lives of those affected by ADHD.
Here is a brief update of the South West London mental health carers forum. The runs once a month.
Quick recap
The South West London Mental Health Carers Forum was established as a carer-led group for connection and learning, the group is co-facilitated by Ava. We also had two speakers for the month of September. The meeting covered various topics such as the role of administrators in mental health services, the importance of involving carers in patient care, the Patient Care Race Equality Framework, and the impact of the cost of living crisis on mental health. The meeting also discussed the work of organizations like Power2Connect and Simple, which focus on digital exclusion and providing access to technology for those who cannot afford it.
South West London Mental Health Carers Forum Meeting
Matthew McKenzie welcomed everyone to the South West London Mental Health Carers Forum, emphasizing its purpose as a carer-led group for connection and learning. He introduced the speakers and encouraged attendees to introduce themselves. A fellow carer member expressed her intention to invite her other carer group members to join the platform. One carer shared her experience on involvement for West London. As the group sometimes connects to the other carer groups matthew runs.
Matthew then introduced the first speaker, Laura McCoy, who was to discuss her role and experiences working in the mental health services.
Administrator’s Experiences and Responsibilities at Psychiatric Ward
Laura, an administrator at Springfield Hospital’s all-female psychiatric ward, shared her experiences and responsibilities. She emphasized the importance of involving carers in the patient’s care from the moment of admission and the need to recognize unpaid carers. Laura also discussed the ward’s unique specifications, such as accommodating Muslim patients and managing bed allocation. She highlighted the importance of understanding the different sections of the admission process for patients and their next of kin, and the need for consent to share information. Laura also noted the distinction between a patient’s next of kin and their nearest relative under the Mental Health Act. She expressed her passion for providing support to carers and acknowledged the need for further work in raising awareness about available support
Addressing Family Pack, Book Availability, and Notice Boards
Ava who runs the peer section of the SW London carers group, expressed interest in seeing a complete family or Carers pack, and Laura agreed to share a some of the contents. Ava raised concerns about the availability of books and the maintenance of notice boards on hospital wards. Laura confirmed they have a bookshelf with around 30 to 40 books and that she maintains the notice boards for patients, mentioning they also have an Independent Domestic Violence Advisor on the ward every Monday. Laura and Ava discussed the importance of addressing issues promptly, with Ava sharing a personal experience that Laura provided some answers. Laura explained her approach to handling such issues, emphasizing direct involvement and follow-up for timely resolution.
Expanding Services, Template Integration, and Lobbying
A carer proposed expanding ideas and information to West London, which matthew agreed could be beneficial. Laura discussed her ongoing talks with the communications team about integrating their family pack into their new template, which might cause a slight delay. Matthew McKenzie suggested Laura send the pack to him for his mailing list. The group also discussed comparing their service with West London trust and potentially testing for improvements. Matthew and another carer discussed their involvement in various groups and events, with the carer expressing her ability to attend these events remotely. The carer also mentioned her participation in various carer support groups, including one led by Gillian Kelly.
Support Groups and Carer-Led Initiatives Discussion
Matthew and another carer discussed the importance of support groups for carers, with the carer emphasizing the need for carers to have a voice and share their experiences. Matthew suggested the possibility of hosting carer-led groups, which the carer agreed was a good idea. Laura, who focuses on contacting carers regardless of their ethnicity, mentioned that she has had her family pack translated into different languages.
Matthew then introduced the topic of the Patient Care Race Equality Framework (PCREF) and encouraged Laura to attend the National Ethnic Carers Forum to learn more about it. However, the other speaker Dominc suggested that Laura could also liaise with Mdad, who is leading on the PCREF initiative at South West London & St Georges. The conversation ended with matthew expressing his focus on families and carers, and Laura’s willingness to share information about the carer-led group.
Improving Mental Health Services and Support
Dominic, a mental project manager for Once of Care Alliance, discussed his role in shaping mental health services based on community input and collaborations. He highlighted his work with the BME mental health forum, supporting the Black and Global Majority Ethnic community, and his efforts to improve support for ex-offenders through drug and alcohol services. Dominic also mentioned collaborations with St. George’s Hospital to enhance perinatal mental health support for the BME community. He stressed the importance of gathering and reporting patient care feedback to improve services. Additionally, Dominc emphasized the significance of addressing mental health and homelessness issues, sharing a personal story about a long-term friend’s relapse of mental health and subsequent homelessness over the past four years.
Addressing Cost of Living Crisis and Mental Health
Dominc discussed the impact of the cost of living crisis on the population, emphasizing that it affects everyone regardless of class or color. He shared personal experiences and statistics to highlight the severity of the issue, noting that a number participants felt sad or depressed due to financial uncertainty. Dominic also pointed out that mental health both contributes to and can be worsened by homelessness, citing statistics from Crisis and Homeless Link. He concluded by discussing the challenges faced in providing mental health support, his involvement in the Mental Health Transformation Group, and his work with the community voices steering group. Dominc also provided guidance on recruitment strategies for mental health services.
Digital Exclusion and Access to Technology Discussion
Dominic provided an overview of his work and introduced two organizations, Power2Connect and Simple, which focus on digital exclusion and providing access to technology for those who cannot afford it. Ava sought clarification on certain terms and mentioned she was awaiting a certificate from an entrance view training. Dominic agreed to send a paragraph about an upcoming event over in Wandsworth.
The event, part of the drug and alcohol service and mental health services open day, aimed to provide support for carers with lived experience of mental health. Dominic promised to send the information about the event to members.
This then lead on to a peer group discussion with fellow carer members. This part was led by Ava.
This concludes the update for the month of September 2024
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.
Welcome to an update of my ethnic carer group. The group focuses discussions, updates and presentations regarding those who care for someone living with mental illness. The group has become national a while back due to supporting “Carers Trust” triangle of care and the new NHS England Patient Carer Race Equality Framework.
Here is a brief update of my national ethnic carer forum.
Linda From West London Health NHS Trust discussed PCREF updates, focusing on supporting patient care and amplifying the voice of service users, communities, and carers. We also was joined by DR Eula Miller a senior lecturer at Manchester Metropolitan University. She shared her two-year project exploring the experiences of minority families accessing and engaging with mental health services, and her work in engaging with black churches in the Greater Manchester area to address mental health issues and myths.
Lastly we were joined by Deepa presented a report on the work done from Healthwatch Greenwich, highlighting the need for culturally sensitive approaches to support carers from ethnic minority backgrounds and developing culturally relevant resources.
Linda discussed her work with the West London Trust, focusing on supporting patient care and amplifying the voice of service users, communities, and carers. She mentioned that they have been working together since February or March and have conducted several listening events. Linda also discussed the progress of the patient and carer race equality framework, emphasizing the need for better communication and feedback loops. She encouraged participants to share their thoughts or questions and proposed a separate meeting for those who wanted to be updated in detail. Linda agreed to work on improving the communication of updates and developments. Other members expressed enthusiasm for a recent presentation, describing it as “very, very, very riveting,” and requested a simplified version of Linda’s PowerPoint presentation.
A carer member of the group expressed interest in the work of the South London and Maudsley NHS Trust’s Equality, Diversity, and Inclusion Advisory Group and requested Linda’s contact details for further conversation. Linda agreed to share her contact details and promised to have a separate conversation with the carer. As Chair of the forum, I then introduced an attendee from Oxford Health NHS trust who had missed the beginning of Linda’s presentation. I mentioned that I would send off any slides or handouts from the meeting for members to digest. The meeting then proceeded to the next speaker, Dr. Eula Miller, who discussed her interest in mental health care and her role as a nurse educator. Eula also mentioned her goal of influencing future practitioners to better engage with carers in the community.
Dr Eula discussed her two-year project exploring the experiences of families accessing and engaging with mental health services. The project involved individual conversations and focus groups, and was particularly relevant during the Covid-19 pandemic. The themes that emerged from the project were categorized into four areas: “If only someone had listened,” “Not knowing,” “Drowning in misunderstanding,” and “What can we do differently.” Dr Eula highlighted the consequences of not being heard, such as loved ones being admitted in crisis situations, and the impact on carers’ health and trust in services. She also noted the participants’ proactive response, forming a self-help group to share knowledge and support each other. Eula’s presentation was well-received, with several attendees expressing interest in her research and seeking further information.
You can read more about the project below
Dr Eula shared her work in engaging with black churches in the Greater Manchester area to address mental health issues and myths. She has been visiting churches, providing information, and linking them to mental health workers. Eula also mentioned her work in educating future nurses on how to assess mental health issues. She offered to share her full report with attendees. I thanked Eula for her work and encouraged others to ask questions. A member from Integrated Care Board expressed interest in reading the full report and potentially replicating Eula’s work in Greenwich.
I also asked Shenade a Wandsworth Carers centre representative about her experiences with minority carers and mental health services. Shenade shared her experiences with the Bridging the Mind Project, highlighting the need for culturally appropriate information and support. A carer attendee of the group praised Eula’s presentation and emphasized the importance of collaboration and information sharing in providing effective care.
A carer attendee expressed her appreciation for Eula’s presentation and acknowledged its relevance to her upcoming work. Another attendee shared her experiences with strengthening cultural sensitivities and the importance of reaching out to diverse communities. She suggested using peer ambassadors and faith leaders to build trust and facilitate communication. Eula agreed, emphasizing the need for collaboration and understanding among different groups. Another professional shared a personal experience of a patient being misjudged due to her religious practices, highlighting the need for education and understanding among staff. The group agreed on the importance of educating staff and engaging with diverse communities to promote fairness and understanding.
Matthew McKenzie then asked and Deepa from HealthWatch Greenwich to discuss the challenges faced by minority carers struggling with mental health issues. Deepa shared her team’s research findings, highlighting the need for culturally sensitive approaches to support carers from ethnic minority backgrounds. She noted the evolving role of carers, the challenges they face, and the importance of clear information about their rights and entitlements. Deepa concluded by presenting recommendations for improving support services for black and ethnic minority carers in Greenwich, including a comprehensive review of existing services, enhancing community engagement, and developing culturally relevant resources.
You can read more about the report below.
This concludes my update of the National ethnic mental health carer forum. See you next month. Please video my carer awareness video regarding minority carers.
