Tag Archives: carers

Ethnic mental health Carer Forum Update September 2024

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.

Quick recap

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.

West London Trust Collaboration and Feedback

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.

South London NHS Trust Advisory Group Discussion

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.

Exploring Mental Health Service Experiences and Themes

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

Black and ethnic minority carers perceptions on mental health services and support in the United Kingdom: a systematic review

Addressing Mental Health in Black Churches

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.

Building Cultural Sensitivities and Community Engagement

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.

Addressing Mental Health Challenges in Minority Carers

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.

https://healthwatchgreenwich.co.uk/report/2024-05-02/experiences-black-and-ethnic-minority-carers

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.

Top 10 signs you should seek help if caring for someone

Welcome back to another carer awareness blog from carer activist Matthew McKenzie. Now we all want to be there for someone who is going through long term or sudden ill health.

We do not want to fail our loved ones, but there are some illnesses that put a lot of pressure on the caring role.

Here are some examples

Feeling Overwhelmed with your caring role.
Physical Exhaustion
Emotional Strain
Changes in Your Relative’s Needs

It is not the fault of the carer or cared for, but it is important caregivers know the signs in order to ask for help.

Below I have made a short video that shows 10 signs that its time to ask for help as an unpaid or informal carer.

Caring for someone close to us, should be one of the most cherished experiences of our lives. It is important that the pressure of the caring role does not cause us to walk away.

Lewisham MH carer forum – October 2024

Here is a brief update of the carer forum I run aimed at those caring for someone with mental health challenges.

The meeting involved a discussion on the challenges faced by carers and service users in accessing healthcare services, with a focus on mental health issues. The group explored the use of storytelling and poetry as tools for raising awareness and improving understanding of the carer’s journey. They also discussed the importance of support networks and the need for proactive communication with healthcare providers to ensure timely appointments and care coordination.

Carer Group Organizer Discussion on Mental Health Challenges

Matthew, the carer group organizer, led a discussion with carers in attendance about their own experieces caring for someone with severe mental illness. Morgan from the Patient Stories Project at South London and Maudsley introduced her work collecting stories from service users and carers.

Patient Stories Project and Personal Experiences

A carer shared his personal experience and situation, which was acknowledged by matthew. Matthew then introduced Morgan, who presented the Patient Stories Project. Morgan explained that the project was initiated to improve the way patient and carer experiences are collected, as traditional surveys were deemed ineffective. The project is partially funded by the Maudsley Charity and aims to provide a human voice to issues faced by patients. Morgan also mentioned that the project is flexible in its approach, allowing patients to share their stories via various methods, including face-to-face, written, or creative methods. A carer member of the group asked about the reporting methods, to which Morgan responded, explaining the various options available. matthew then shared his own experience of using poetry to raise awareness about carers.

Using Poetry for Caregiving Experiences and Collaboration

Matthew shared his thoughts on using caregiving experiences to connect with others through poetry. He highlighted the power of poetry to express emotions, create vivid imagery, and inspire creativity. Matthew also mentioned his own caregiving experience and how it has influenced his writing, with a focus on raising awareness about caring for someone with mental ill health. He expressed interest in meeting with Morgan to discuss further collaboration.

Improving Carer Experiences and Breaking Stigma

The meeting also focused on improving the experiences of carers and service users through sharing stories and experiences to break stigma and enhance understanding of the carer’s journey. The importance of carers’ voices being heard more clearly in survey data and feedback mechanisms was emphasized. Positive experiences from carers were shared, along with areas for improvement. The use of social media, such as Twitter, was discussed as a tool for raising awareness and seeking help.

Addressing Access Challenges for Patients

A carer discussed the challenges faced by a patient who was referred to Lewisham Single Point of Access but was unable to access services due to a referral requirement from her GP in Lambeth. Someone suggested that they should meet with the GP to discuss available services and potential referrals. Carers agreed that this situation was a good case study for understanding the difficulties in accessing services. A carer also mentioned that the patient’s chronic health condition and the conflict between Lambeth and Lewisham services were complicating the situation. The team decided to leverage the GP’s power to refer the patient to appropriate services and start her on therapy.

Addressing Healthcare Access Challenges and Recruitment

Carers also discussed the challenges faced by individuals in accessing healthcare services. They highlighted the need for a carer’s lead to be appointed.

They also discussed the difficulties in the recruitment process, particularly the time it takes for background checks and DBS checks. matthew proposed reaching out to mental health nurses in GP surgeries for further assistance. The team agreed to continue their efforts to improve the situation and support those in need.

What are carers rights?

Another carer awareness and carers rights blog post from Matthew McKenzie. When caring for someone with long term illness. It is very important to be aware of your carers rights.

We all have them, but unfortunately most of us are not aware and might not be told about those rights. We are too busy worrying about the health of our loved one or close relative.

As of 2024 21st of november. It will be Carers Rights day and although I will do my best to raise awareness of this important day for carers and organisations that support carers. I thought to make a blog and video now.

It is all too easy to fall into the role of unpaid caregiver and not reach out for any support. This is important to recognise. As carers, we also need some support in our caring role.

Remember to feedback on my video and good luck recognising your carers rights.

Identifying yourself as a cancer caregiver

Welcome back to another blog poster from Matthew McKenzie, carer activist and a member of the Macmillan Cancer Community Network. I chair the National Cancer carer forum aimed at those caring for someone living with cancer.

if you struggle with caring for someone with cancer. As carers, we never want to see our loved ones struggle. But caring for someone with cancer can be incredibly frightening. It’s hard to be strong for them if you’re struggling too. That’s why it’s so important to identify yourself as a carer.

Feel free to watch the short carer awareness video I made below.

By registering at your doctor’s surgery, a carer centre, or a Macmillan Cancer Support group, you can access the support you need. Get the help you deserve. Remember, you’re not alone in this. By identifying yourself as a carer, you’re opening the door to resources, advice, and a community that understands what you’re going through.

You can also register for my online group, that runs the last Wednesday of the month.

Click this link to book for the group

Take that step today. For yourself, and for your loved one. You’re doing an amazing role. Get yourself supported every step of the way.

Cygnet West London Carer event

Welcome back to a brief update of a carers event planned by carer Nadia Taylor (Chair of Carers Network) and myself with support from Cygnet and West London Health Trust. The event was held at Cygnet Harrow, over Harrow on the Hill. The event was called “West London Carers Event” and the theme focused on Carers Rights, carer engagement and carer stories.

As carers of those using or have used mental health services, we feel it is important to have our voices heard. As a cygnet network carer ambassador, I was delighted to have the chance to connect with carers and provide carer awareness to staff who worked at the hospital.

The event was prepared by Afifa Ghouri who is Cygnet’s Senior social worker. She provided a lot of support to the speakers and ushered the audience to learn from various topics.

I have been running a carer group with Afifa for the hospital. We want to reach out to families and carers whose loved ones use the services of Cygnet Harrow hospital.

It was not long we were up on stage to open the event.

We were joined by Dr Azmathulla Khan who is the Medical Director at Cygnet Harrow. It is important to have support of mental health professionals.

First to present was Gillian Kelly who I have known many years for my involvement at West London Health trust. Gillian supported the event, which was carer led and spoke about her story and the vision West London health trust has for unpaid carers.

Where after a few speeches, we then moved on to our first session of the event where Nadia talked about the important of Carer’s Rights and how the charity Carers Network supports carers.

Nadia is a Carer and also an activist and campaigns for unpaid Carers’ rights and recognition, as well as for the provision of the minimum living wage for unpaid carers. Nadia Taylor is the Chair of the Board of Trustees of Carers Network, supporting unpaid Carers in the London Boroughs of Hammersmith & Fulham, Kensington & Chelsea and Westminster.

Harrow Carers were up next also talking about carer’s rights, but also added how they support carers for the borough of Harrow.

If you remember, they did an excellent community event for Carer recognition awards, which I helped judge. You can see the video below.

It was great to see so many staff from Harrow carers support the event, even the CEO of Harrow Carers dropped by to observe the event and network.

From the images below, Simon Joshua presented on Carers rights.

We hope to see some partnership working with the carers centres in future. We then moved to lunch to network with other attendees.

We got to hear about what people thought of the event so far. It was great to get feedback as we plan to do more events i future. After Lunch we heard from Dr Rosalind Duhs who spoke to us about her Carers Journey regarding dementia. Although her talk was fairly short, I learned a lot from her.

Dr Rosalnd has Strong support from family, the Carers’ Network, Alzheimer’s Society Admiral Nurses, and the NHS have enabled her to do the best that she can for him. She a member of the Dementia Lived Experience Steering Group, Imperial College Care Research & Technology Centre.

We then had Giftie who spoke about her caring journey although she is not from the area, we welcomed giftie as she share the impact of her story. Giftie was also kind to read 2 poems out of my book. I could not do a better job. One of the poems Giftie read was called “Whats going on?” where the poem can be viewed below

Next up to speak was Malcolm Moore on the topic of carer mental wellbeing. Malcolm is an independent producer, consultant and trainer. Since unexpectedly becoming an unpaid family carer 12 years ago, he co-produced and co-facilitated the West London NHS Trust’s ‘Carer Awareness’ training for NHS staff and continues to sit on their Carers Council Board. Malcolm is a former spokesman for the Working for Carers programme led by the Carers Trust.

Malcolm gave an excellent lesson on the effects of caring regarding carer mental health. It is important carers are aware of the mental health and seek support when needed.

The event was closed by Laura who is cygnet’s carers lead. Laura explained about the work Cygnet is doing to engage with carers.

All in all, as carers who want to be heard, we are thankful for the support of Cygnet and West London health trust in helping to give carers a voice. We look forward to using our carers voice to connect with other carers.

Quotes to cope with sadness and grief

Welcome to my site raising awareness of those who care for someone with long term illness.

Caring for someone going through either mental health conditions or cancer can be a special role, but also challenging. Caring for someone close or a close friend can be an emotional rollarcoster. As carers there are times when we just cannot be in command of our own emotions.

Due to these challenges, you will experience decline in the person’s mental and physical health. This is distressing to experience and deal with. Every so often I release videos to help those focus on combating these difficult emotions. Even if for a short while.

Feel free to watch my video below.

If you are caring for someone. Remember to look after yourself.

What is carer peer support

Welcome back to another blog post from carer activist Matthew McKenzie. I post my thoughts, ideas and experiences when it comes to those caring for someone with long term illness.

I run many groups aimed at those caring for someone with mental illness or Cancer, you can probably see most of my groups off the forum section off this website.

However, many wonder why I run so many groups? Why do I commit to connecting with carers? Well, I have learned many things over the years when my caring role was getting challenging.

I found myself isolated, distressed and anxious. I wondered if I was the only one struggling and making mistakes when trying to support my family. It was not long before attending a carer support group, I got to meet others who were also caring for someone living with mental illness.

The other carers often checked up on me and that gave me the idea to set up several WhatsApp groups so we can stay connected as a peer group. The groups have an added impact of reducing isolation, being kept up to date on news and event, building up a carers network and being beneficial overall to mental wellbeing.

Over the years I managed to develop my online carer groups to have a peer structure so others can feel connected and heard.

If you want to find out the importance of carer peer groups, check out my video below on what is carer peer support.

Thanks for reading.

Talking about emotions when caring for someone with cancer

Welcome back to another blog post from Matthew McKenzie. As a facilitator of many carer groups. I run the London cancer carer forum, which will soon become national. The online group runs the last wednesday of the month and those interested can find out more off Macmillan cancer support website.

Macmillan Cancer Support – London Cancer carer forum

This post is about seeking support when overwhelmed with emotions as a cancer caregiver.

It can be such a shock when finding out someone you love has been diagnosed with cancer. Waves of difficult emotions can flood the carer and it can be so easy to go under.

It is important carers find ways to talk about their thoughts and feelings. I have made a video, which you can watch below.

I hope those coping with their caring role can learn a few tips on seeking support. It is important cancer caregivers get support for themselves as well.

Thanks for watching and reading.

The Power of Poetry to reach carers

Welcome back.

Here is a new blog post from carer activist Matthew McKenzie. I write about the challenges, roles and journeys of those caring for someone. Usually the experience of caring for someone with mental health challenges or someone living with cancer.

However, I find that writing is not enough when trying to connect with others. I find poetry a great way of sharing experiences, creativity and understanding.

There can be challenges of using creativity to explain the experiences of caring. It all becomes worth while in the performance, even if things do not go as expected.

Each person finds the poem will mean something different to them. Just as no carer’s journey is the same, this can be included as to how poems can mean something different.

In order to promote the power of poetry, I have made a short video of my ideas, which you can see below.

In life, whatever we experience will eventually pass and things move so fast that we are left wondering what it was all about. If we can leave something behind, express our experiences, share our thoughts of our existance then we can for a brief moment connect with others.