This 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.
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Welcome back to another blog post by carer activist Matthew McKenzie. I am involved in quite a few things and one of them is being one of the Carer Network Ambassadors for Cygnet. This means we have a keen interest in networking and support families, friends and carers throughout the community.
One way to connect to carers is through carer led events. You see, we are more than just our roles, we are more than carers and just once there should be a space for families, friends can carers to express themselves, take time out for themselves despite the emotional and difficult journeys they face.
So following off the successful event held over at one of the Cygnet sites Churchill hospital.
Carers Annette Davis and Faith Smith set out to host Postive Talents part 2 to give a chance for carers to showcase their talents and have a night out for entertainment to reduce isolation.
The Positive Talents – Part 2 event took place on friday 29th of November 2024. For this event we had an amazing range of performing acts, including poets, singers, dancers, book readings and interests that those with lived experience of caring promoted.
I will not go fully into all the acts as you can watch the video below and fast forward to any of the performances you want to see.
The event included a Raffle section, food and refreshments and a way for carers to network to reduce isolation and stigma.
However the event was worth attending to give carers of London a chance to have space for them with thanks to Laura Sheridan Cygnet Head Carer & Service User Engagement and staff at Cygnet for the excellent hospitality.
Well done to all the carers who performed at the event who were awarded certificates.
We look forward for the next Positive Talents show.
Another 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.
Continue readingSupporting unpaid carers is a greatly unrecognized yet profoundly impactful endeavor. In our latest interview from a series dedicated to highlighting those who go out of their way to aid and uplift unpaid carers, Matthew McKenzie had the opportunity to speak with Ionie Hughes.
Ionie talked about how she tries to reach parent carers through her charity, Socialising Angels, which is a C.I.C that was created to help reduce isolation, which focuses to help young adults with social, emotional and mental health needs.
You can watch the full interview below.
Drawing from her personal experiences and relentless advocacy, Ionie provides invaluable insight into the unique challenges and necessities of unpaid carers. Below, we delve into Ionie’s story, her organization, and the far-reaching influence of her work.
Ionie is trained in Rational Emotional Behavior Therapy, reinforcing her belief that altering one’s mindset and belief systems is crucial for overcoming challenges. She emphasizes positive thinking and speech, offering powerful encouragement and practical advice to other carers. Her ability to balance personal experience with professional training enhances her effectiveness as a support figure.
Socializing Angels CIC, founded by Ionie in 2022 and operational since 2023, is based in Brixton. The organization aims to bring young adults with various disabilities into the community, providing them with social engagement opportunities. This initiative not only enriches the lives of the young adults but also offers respite to their parent carers.
Running a community interest company like Socializing Angels comes with its own set of challenges. As the CEO, Ionie juggles multiple responsibilities without financial compensation, as most of the organization’s funds are directed toward service provision. The startup phase of the CIC is heavily reliant on external funding and the dedication of its founder.
Ionie’s work extends beyond service provision for her own son to advocating for and supporting other young adults and their families. This dual role often leads to overwhelming exhaustion and the risk of burnout. However, her steadfast commitment to both her son and her organization underscores the dedication and resilience inherent to unpaid carers.
Unpaid carers perform a plethora of tasks around the clock, often without recognition or financial remuneration. Their roles are multifaceted, ranging from advocacy to personal assistance and emotional support.
Ionie points out that unpaid carers frequently experience burnout due to the nonstop nature of their responsibilities. The mental toll of continually advocating and caring for a loved one, compounded by the financial strain of a cost-of-living crisis, is immense.
Despite these challenges, the integrity and love that motivate unpaid carers are evident. They dedicate themselves selflessly to the welfare of others, driven by an unwavering commitment to their loved ones. This spirit of selflessness is emblematic of the unpaid carer community.
For carers seeking to make a difference, understanding the community landscape is crucial. This involves attending meetings, forums, and various community events to stay informed and engaged. Personal interactions and shared experiences are key elements in creating a supportive network.
Ionie highlights the importance of empathy, compassion, and active listening in supporting fellow carers. Building a rapport and a community based on mutual understanding and shared experiences can provide both practical support and emotional solace.
Personal experience is a powerful tool in advocacy. Ionie’s own journey has been instrumental in shaping her ability to help others. By sharing her story and the strategies that have worked for her, she provides a valuable blueprint for other carers seeking guidance and support.
Ionie Hughes’ journey and dedication shine a spotlight on the often-overlooked world of unpaid carers. Her relentless advocacy, personal sacrifices, and the establishment of Socializing Angels CIC stand as a testament to the incredible impact one person can have in making the world a more inclusive and supportive place.
Through recognizing and addressing the challenges faced by unpaid carers, we can begin to create a more understanding and supportive environment. It is imperative to appreciate and uplift those who selflessly dedicate their lives to the care of others, often without any form of compensation or recognition. Ionie’s story is a powerful reminder of the strength and resilience that define the carer community.
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 readingWelcome to a brief update of my ethnic mental health carers forum. For this month we were joined by South West London & St George research team. The team from a training company introduced a cultural capability training program aimed at reducing race and ethnic disparities in mental health care, while Matthew presented a summary of various reports highlighting health inequalities faced by ethnic minorities in the UK. The Forum also discussed the importance of advocacy for carers, the challenges of engaging with diverse communities. A carer from South Yorkshire also discussed the potential for setting up a group to support black people in the area.
Cultural Competence Training for Trusts
The training company introduced a cultural capability training program they are developing for the South West London and St. George’s Mental Health Trust. The program is part of an ethnicity and mental health improvement project and aims to reduce race and ethnic disparities in mental health care. Representatives from the team also discussed their evidence review on cultural competence in mental health care and their use of a model of cultural competence. The training is expected to impact staff, carers, and patients by promoting culturally sensitive care plans and reducing inequalities. The team also discussed the potential to tailor the training for other trusts.
Addressing Health Inequalities and Disparities
Matthew presented a summary of various reports highlighting health inequalities and disparities faced by ethnic minorities in the UK. He emphasized the importance of these reports in supporting the Patient Care Race Equality Framework (PCRF) and other initiatives addressing health inequalities, discrimination, and racism. The reports, from organizations such as the NHS Race and Health Observatory, Public Health England, and the CQC, demonstrate that ethnic minorities face higher risks with certain health conditions, barriers to accessing services, and poorer health outcomes.
Matthew also mentioned the role of institutional racism, socioeconomic disparities, and cultural barriers in perpetuating these disparities. He concluded by emphasizing the need for systematic reforms to ensure equitable health outcomes for all.
Addressing Healthcare Disparities and Trauma
Laura from Cygnet HealthCare expressed her appreciation for Matthew’s ability to present information in an understandable and accessible manner, which she believes is not done enough. She also highlighted the importance of Matthew’s role in educating others and ensuring the right actions are taken. A carer member of the group then brought up a report from the Race Equality Foundation and Learning Disability England, which highlighted disparities in access to healthcare for ethnic minorities with learning disabilities. She shared her personal experience of a young person with a learning disability, autism, and mental health issues facing challenges during the COVID-19 pandemic. The group acknowledged the system-generated trauma faced by carers and the need for more awareness and action on these issues.
Mental Health and Learning Disability Event
In the meeting, A carer highlighted the upcoming mental health and learning disability listening event, which was previously cancelled due to lack of awareness. Others at the meeting expressed their support for the event and the importance of advocating for carers.
A representative from Surrey & Borders NHS trust who is the programme lead for carers and co-production, discussed the Trust’s co-production framework and their efforts to reach a diverse community for co-production opportunities. She also mentioned the Trust’s strategy to mirror the triangle of care. Matthew shared his experience at the Trust’s learning event and his plans to help promote the Trust’s work, particularly in relation to carer involvement.
Mental Health Event Postponement Concerns
A carer expressed surprise at the postponement of a mental health and learning disabilities listening event, which was initially scheduled for September. Another carer, who is relatively new to the Maudsley, had not been aware of the event’s postponement and was concerned about its lack of awareness. She had reached out to various individuals within the organization, including others, to discuss the event. Carers suggested that the carer should also speak to Zoe Reed or Shania, who are in charge of PCREF, to ensure the event’s success. The carer agreed to continue her efforts to promote the event and ensure its awareness.
Supporting Black Mental Health Groups
Carers discussed the potential for setting up a group to support black people in South Yorkshire, with Matthew suggesting that funding could be sought from the ICB and the charity associated with their NHS trust. A carer shared his experiences with a similar group in Peterborough, emphasizing the need for more conversation and less medication in mental health care for black people. A Carer, who is involved in setting up a group in Kent, shared her challenges due to the predominantly population in her area. Matthew also mentioned an upcoming event on the new Mental Health Act and its potential impact on carers. The team agreed to reconvene in January.
Welcome back to a brief update of another group I chair with support of London Hospitals and the carer centres of London, along with carers who want the best service of those using the NHS.
The group is called the “Carers hospital discharge toolkit meeting”. This group runs every 2 months and follows off the work the previous NHS England carer lead for London developed.
The community deserves the best care possible from the NHS and that includes carers who support those they care for using the hospitals in London and beyond. This was taken up by NHS England Carer lead for London Debbie Hustings who worked very hard to produce the toolkit linked below.
London Carers Hospital Discharge toolkit
Feeling passionate on continuing the work, Carer centres and hospital representatives came together to support me in driving this brilliant toolkit. The group has been running 2 years and developing rapidly.
Here is the update for November 2024
The meeting for November focused on the development and progress of various resources aimed at supporting carers and families during hospital discharge, including a comprehensive carers’ pack, a digital resource, and a new pilot project at the Carers Hub Lambeth. The group members discussed the importance of collaboration, sustainability, and language accessibility in these resources, with plans for further development and translation. The meeting also highlighted the challenges faced in hospital discharge and capacity, and the need for more integrated work with partners and other local authorities.
Matthew Mckenzie welcomed everyone to the London Hospital Discharge Toolkit group meeting. The meeting aimed to keep the momentum going on a resource that helps hospitals engage more families and carers, especially during discharge. Matthew encouraged participants to introduce themselves and share their experiences. The attendees included representatives from Tower Hamlet Carers, Barnet Carers, Sutton Carers Centre, Lewisham & Greenwich NHS Trust, Greenwich Council, Greenwich Carers Centre, St Georges University hospital trust or GESH, Lambeth Carers Hub, Bexley Carers Centre and unpaid carers. Each participant shared their roles and experiences in their respective organizations, with a focus on hospital discharge and carer support. The conversation ended with Matthew encouraging further participation and updates on the toolkit’s progress across the London hospitals in order to work with carer centres and local authorities.
Carers Hub Pilot Project Update
Rachael discussed the progress of a new pilot project at the Carers Hub Lambeth, which involves a hospital discharge lead supporting carers and promoting carer awareness. She mentioned the introduction of an additional tier of service for registered carers and the need to join forces with other GSTT and Kings College NHS trust to support carers. Rachael also expressed interest in discussing the project developments further with Matthew and others in the New Year.
Greenwich Council then presented the Greenwich Carers Pack, a comprehensive information booklet developed in co-production with unpaid carers in Greenwich. The pack includes information about carers’ rights, assessments, and support, as well as details about local community resources. Greenwich council mentioned plans to translate the pack into Nepalese and distribute physical copies to hospitals, GP surgeries, and community centers.
Carers Pack Development and Resources
Evie who chairs Greenwich Councils Carers Partnership board then discussed the development of a carers pack, which was designed to be interactive and easy to navigate. The pack covers various resources available to carers, including local and national ones, and provides bite-sized notes for carers to jot down important information. It also includes sections on employment rights, respite, legal responsibilities, financial support, home safety, and advocacy. The pack is designed to be a one-stop resource for carers, with links to all the resources mentioned. Evie also mentioned that the design team has done an excellent job, and the pack will be further developed as it goes to double pages. Matthew expressed his appreciation for the pack and requested the link to it when he runs his carer stall at the hospitals.
Digital Resource and Carer Navigation
Greenwich Council thn discussed the development of a digital resource and physical copies for a project, with plans for posters featuring QR codes for easy access. The project was well-received, with a carer and Matthew expressing their appreciation and interest in using it for their respective areas. A carer also highlighted the importance of connection and navigation for carers, noting that many learn from other carers rather than official sources. The team agreed to continue developing the project and to share it with other local authorities.
Improving Carers’ Information Pack Development
A carer expressed concerns about the lack of connection and input from various parts of the system in the development of the carers’ information pack. She highlighted the need for a more comprehensive approach, especially considering the cross-borough nature of some carers’ support. Greenwich council representive acknowledged these concerns and explained that the pack was developed by a different team, with input from Oxleas NHS trust and other organizations. She also mentioned that they are working on a more summary version and translations. The team agreed on the need for more integrated work with partners and other local authorities.
Comprehensive Carer Handbook Development Discussed
Members continued to discuss the development of a comprehensive handbook for carers. The presenters clarified that they were not planning to create a smaller, bite-sized version of the handbook, but were open to feedback suggesting such a change. The handbook will be available in various locations, including GP practices, libraries, and community centers, and can be accessed digitally via QR codes. THey also mentioned the importance of keeping the information up to date and being mindful of sustainability policies. A hospital representative expressed interest in sharing the document with other boroughs and asked about contacts within the hospital for potential distribution of the handbook. They agreed to check with colleagues about existing contacts and welcomed any additional contacts. The group encouraged others to share relevant contacts.
Consistent Information for Carers
Greenwich Council reps emphasized the importance of having consistent information spread across South East London, particularly for carers. Greenwich Carers representative praised the new greenwich council carers resource, noting its potential to be a valuable resource for carers. She also mentioned the commitment to keeping the information up-to-date, particularly on the digital portal. Evie added that they plan to translate the pack into Nepalese and other key languages for carers in the borough, and also consider developing an easy-read version. Matthew ended the conversation by noting the ease of language changes in a digital format.
St Georges Hospital NHS Trust Progress and Future Plans
Wendy from St Georges hospital who shared her team’s achievements, including virtual training sessions, bespoke staff training, and the upcoming launch of a carers’ information section on the St. George’s website. Wendy also mentioned her goal for 2025: developing a carers’ charter and survey. The team expressed their anticipation for the upcoming carers’ forum, which Matthew will be attending.
Carer Support Challenges and Progress
Tower Hamlet Carers Centre discussed the challenges and progress of their work in Tower Hamlets at royal london hospital which one of the 5 hospitals under Barts NHS Trust.
Tower Hamlet Carers centre representative is expressed her hope for having volunteers who were carers themselves to help provide the service. She also mentioned a plan to create a co-produced pack of resources for carers, which would be based at the hospital’s front desk. She highlighted the difficulty in discharge planning due to the pressures of the hospital system, which sometimes led to carers not being fully involved. Despite these challenges, Tower Hamlets Carers centre expressed optimism about the service’s progress and future plans, including the potential addition of more carer support workers. Wendy from St Georges offer her support, which I thought was very admirable.
Barnet Carers Centre update
Matthew then handed over to Mike the CEO of Barnet Carers Centre, who presented a project aimed at directing carers to the right support organization through a portal. The portal, currently under development, would direct carers to the appropriate center based on their postcode. Mike also mentioned the project’s expansion to include mental health and allied health professionals this would be the merged Mental health trusts Camden & Islington and Barnet, Enfield & Haringey who have combined into north london mental health partnership.
A carer raised a question about identifying carers during pre-assessment, to which Wendy Doyle responded that their system includes a question about whether the patient is a carer. The possibility of discussing this further in a future meeting was left open.
This concludes the short update to continue progression of the excellent legacy Debbie husting has left for London hospitals and beyond.
A Caring Mind 