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.
Here is a brief update for November 2024. However before continuing on to the blog, here is a quick update from Southwark Council and South East London ICS aimed at carers from Southwark.
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Grief affects us all at some point in our lives, but for unpaid carers who have dedicated their energy and resources to looking after someone with a long-term illness, the passing of their loved one carries a unique weight. This article by carer activist Matthew McKenzie delves into the ways unpaid carers can cope with this profound sense of loss, exploring the emotional depths of grief and offering practical advice on navigating these difficult waters.
Continue readingThis blog post and video is by carer activist Matthew McKenzie doing his bit to raise awareness of grief and wellbeing.
To watch the 2 minute video please click below.
Grief can be an overwhelming and isolating experience, touching all aspects of a person’s life. In recognition of this, the UK observes National Grief Awareness Week from December 2nd to December 8th each year.
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Addressing health disparities, especially for patients with serious mental illness (SMI), is crucial in improving cancer treatment outcomes. This post by Matthew Mckenzie who facilitates the National cancer carer forum explores the multifaceted challenges faced by this vulnerable group and the necessary steps to tackle these inequalities.
To watch the video regarding Cancer and Serious Mental Illness, please click below.
Before continuing with the post, South East London Cancer Alliance. have just released their Cancer And Serious Mental Illness Information Resource. These have been co-created by SELCA, South London & Maudsley and the HIN, while working closely with people with lived experience of cancer and serious mental illnesses. You can visit and see the resources here: https://www.selca.nhs.uk/patients-and-carers/cancer-and-serious-mental-illness
The following sections might be of particular interest as they focus on cancer risks and screening.
Continue readingWelcome back to another Carer Champion interview. Carers play an essential role in our society, often operating behind the scenes and without pay. In this interview, we meet Maz, a volunteer with Carers UK, who sheds light on the nature of unpaid care work, the challenges carers face, and the significant support networks available for them. Let’s dive into her invaluable insights.
To watch the video, please click play on the video below.
The Hidden Army of Carers
Maz describes unpaid carers as a “hidden army” that tirelessly provides care for loved ones, often without much recognition or support. Unlike professional care workers who are trained and compensated for their services, unpaid carers usually step into the role out of necessity and affection for those they care for. Maz herself is an example of a “sandwich carer,” a term used for someone who cares for both their elderly parents and their adult children.
Continue readingAnother awareness video and blog by carer activist Matthew McKenzie. If you wish to watch the video. Please click below.
Addiction is a powerful force affecting millions of lives around the globe. As we approach Addiction Awareness Week 2024, it’s essential to shine a spotlight on this critical issue, emphasizing that while addiction affects everyone, recovery is always possible.
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Living with Parkinson’s disease is undeniably challenging, not just for those diagnosed but also for those who support them. During a recent panel discussion from Parkinsons UK, experience of care experts including Matthew McKenzie and volunteers shared their insights and experiences on managing these challenges, offering valuable advice for fellow caregivers. The discussion highlighted key aspects of being on the supporters journey, from communicating diagnoses to seeking support and handling medication concerns. Here, we summarize the essential points covered during the session for a comprehensive guide.
Parkinson’s UK is a leading charity dedicated to improving the lives of people affected by Parkinson’s disease in the United Kingdom. Established in 1969, the organization provides vital support, information, and resources to individuals living with the condition, as well as their families and caregivers. Parkinson’s UK also funds groundbreaking research aimed at finding better treatments and ultimately a cure for the disease.
Parkinson’s UK held a Panel interview to highlight and educate those who are new to the caring role and want to find out more about supporting someone with Parkinsons. Below is a small summary of the panel interview, although if you want to watch the Panel discussion, please click on the video below.
In this blog post, if you are involved at your local mental health NHS trust as a carer or patient. This blog will help you learn about the crucial roles of key staff in implementing the Patient Care Race Quality Framework in Mental Health Trusts.
From leadership to community engagement, discover how systematic changes can address racial disparities and promote accountability.
If you want to watch the video, this please click on the item below.
Mental health services play a crucial role in supporting individuals through challenging periods in their lives. However, despite their importance, these services have often fallen short when it comes to providing equitable care to individuals from minority backgrounds.
Continue readingHello all. Especially those who support someone with mental ill health. Treat someone with mental ill health or those who are interested in Carer’s Trust Triangle of Care. As an expert by experience regarding mental health unpaid care. I am delighted to be given the chance to chair these meetings, which I have been doing for around 2 years.
The meeting I chair is the national community group, which I try to run every 2 months and usually, I do not have the capacity to chair, organise and minute them, but now I have decided to attempt to update via my carers website. The main reason is to let carers know of the important themes that will affect them if caring for someone with mental ill health.
More information on Carers Trust – Triangle of Care
Topics covered for the ToC community meeting November 2024
The meeting covered various aspects of carer involvement in mental health care, including the Triangle of Care approach, challenges faced by carers, and the development of tools to improve communication between patients, clinicians, and carers. Discussions also focused on the Making Carers Count program presented by Carers Trust “Making Carers Count” programme lead Ben O’Hanlon, which aimed to support underrepresented carer groups.
Lastly we discussed the potential impacts of the new Mental Health Bill on carers. Concerns were raised about the implementation of the Mental Health Act reforms and their implications for carers, highlighting the need for better support and representation in the decision-making process.
Triangle of Care Update Meeting
The meeting discussed promoting the Triangle of Care approach to involve families and unpaid carers in mental health care settings. Mary Patel, the new co-lead for Triangle of Care at Carers Trust, introduced herself and her background. A carer raised concerns that mental health services seem less willing now to genuinely listen to carers compared to when Triangle of Care was first launched.
We then had Marta, a researcher, who requested help from carers in London to complete a survey on shared decision-making in mental health that includes a carer version. The group then heard presentations from Alan Worthington on engaging carers in primary care and Karen on the Mental Health Act reform’s impact on carers.
Developing Patient-Clinician Carer Questionnaires
In the meeting, Marta discussed the development of questionnaires for patients, clinicians, and carers to evaluate the effectiveness of conversations and identify discrepancies. She emphasized the importance of involving patients in treatment decisions and the need to make the questionnaires as succinct as possible while still capturing valuable information. A Carer raised concerns about the cultural aspects of the questionnaires and the need to address diversity issues. Another carer shared her experience as a carer lead at a mental health trust, highlighting the importance of co-producing carers questionnaires to gather valuable feedback.
Engagement and Support in Medical Practices
Alan Worthington discussed the importance of engagement, involvement, and support in medical practices, particularly for carers. He emphasized the need for professionals to be prepared to talk to carers, share information, and break confidentiality. Alan also highlighted the significance of patient public involvement and feedback in improving the system. He shared his experience with a complaints book in his surgery, which became a valuable resource for patients to express their experiences. Alan also touched on the issue of support from medical staff, particularly doctors, and the need for special time with them. He concluded by discussing the impact of Covid-19 on carers and the need for self-help and monitoring.
Regular Health Monitoring With Alan
Alan also discussed the importance of regularly checking weight and blood pressure, using a digital thermometer and blood pressure meter. He emphasized the significance of monitoring blood pressure, as it can be a lifesaver and help identify potential health issues. Alan also highlighted the importance of using a digital thermometer, as it provides quick and accurate readings. He further discussed the use of urine testing strips, which can help detect urinary tract infections. Alan concluded by emphasizing the importance of having a blood pressure meter, oximeter, and urine testing strips in one’s medical kit.
Covid-19 Risks and Carer Support
Alan discussed the ongoing risks of Covid-19 and the importance of being vigilant. He also highlighted the potential benefits of certain painkillers and promoted their use by carers. Alan emphasized the need for carers to take charge of their situations and seek help when necessary. He also shared a personal experience caring regarding stroke and the importance of quick action. Alan suggested that the Carers Trust could share this information with unrecognized and unheard carers.
Making Carers Count Program Outcomes
Ben discussed the Making Carers Count program, a three-year initiative aimed at supporting carers from underrepresented groups. A lot of the presentation was aimed at carer centre representatives, especially those involved in the “Making Carers Count” programme.
The program, which concluded earlier this year, focused on improving access to digital, online, and peer support. Ben highlighted the program’s positive outcomes, including improved reach, support, registration, and engagement for carers from these groups.
He also mentioned the publication of a final evaluation and five practical good practice guides based on the program’s key themes. These guides are intended to be accessible resources for organizations looking to improve their services for carers. Ben also mentioned the program’s legacy projects and the appointment of a new EDI lead at Carers Trust. Matthew McKenzie raised concerns about the program’s sustainability and the risk of losing the momentum and funding. Ben responded by emphasizing the importance of embedding the program’s work across the network and the potential for organic changes in practices.
More information on Making Carers Count
Mental Health Bill Key Reforms
Karen Machin discussed her passion for the Mental Health Bill, which has been in the works for a while. She highlighted the bill’s key reforms, including a higher bar for detention, stricter criteria for community treatment orders, and the establishment of a mental disorder within 28 days for detention. Karen also expressed concern about the support for family and friend carers in the bill, as well as the potential for a public discourse around risk. She encouraged everyone to read the full document of her presentation for more information.
Mental Health Act Changes Impact Carers
Karen Machin presented on the changes to the Mental Health Act, focusing on the impact on carers. She expressed concerns about the potential decrease in the number of people detained, which could lead to increased responsibility for carers. Karen also highlighted the importance of considering the impact on carers’ mental health and the need for their voices to be heard in the decision-making process. She suggested that carers should contact their MPs to raise their queries or concerns and ensure their voices are represented. The group agreed that the changes of the Mental Health Act are welcomed, there will be significant implications for family carers and it is important that their input is crucial in shaping the future of mental health care.
UK Mental Health Act Reforms
In this meeting segment, the key points discussed were concerns around the new Mental Health Act reforms in the UK. A carer shared her worrying experiences where her relative, who lacks insight into their mental illness, could potentially nominate an inappropriate person to make decisions on his behalf instead of his family carer. The group discussed how this law, while well-intentioned, fails to account for complex family situations and resource constraints in mental health services. There were also concerns about lack of funding for proper implementation of the reforms, and the need for better training and preparation for families and carers to understand their rights under the new law. The discussion highlighted the importance of mental health trusts and carer organizations being proactive in addressing these issues and advocating for the voices of carers to be heard.
Reponses to the Mental Health Bill
NHS Confed – https://www.nhsconfed.org/publications/mental-health-bill-2024
Community Care article – https://www.communitycare.co.uk/2024/11/06/bill-to-overhaul-outdated-mental-health-act-introduced/
I love being creative and finding inventive ways of promoting the carer journey and mental wellbeing. One of the best ways of expression is the use of art. I am not a brilliant artist, and to be honest I am more of a poet. Still, art therapy has come a long way into helping others find ways to.
I often find poetry and developing visual art as a calming and relaxing hobby. So I decided to create a video post on 10 ways art inspires psychological healing and self expression. This video is called “10 ways art inspires psychological healing and self expression”.
For those grappling with trauma or stress, art provides a non-verbal outlet to externalize complex feelings that may be difficult to articulate. For instance, painting or drawing allows individuals to symbolically represent their inner world, creating a sense of control and mastery over overwhelming emotions. Additionally, the act of creating art can promote mindfulness, grounding the person in the present moment and reducing symptoms of anxiety and depression.
A Caring Mind 