IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.
Welcome fellow carers. As of writing this blog post, it is still the start of Black History month 2023. There are many exciting events taking place. I will try my best to help promote ethnic carer events.
Luckily we have an event aimed at unpaid carers from Black communities. We have to explore and acknowledge that not all carers experiences are the same. Just like I often say not all carer journeys are the same.
As part of Black History Month, Dr Juliana Onwumere from the Institute of Psychiatry, Psychology & Neuroscience at King’s and South London and Maudsley NHS Foundation Trust will facilitate an online panel discussion focussing on the experiences, wellbeing and unmet needs of carers from Black communities in the UK, including young carers.
This event is open to anyone including members of Black communities across the UK.
Panel members:
Tim Banks, Research & Engagement Manager, Carers Trust
Peter Alleyne, Director of Equity, Inclusion and Involvement, Rethink Mental Illness
Angela Anwah, Founder & Director: Mental Health and the Arts
As of this blog post from Matthew McKenzie, it is Black History Month 2023. Previously I had written my thoughts about what Black History month means to me. Black history is what defines me and what makes me work so hard to promote wellbeing and promote community. I want people to connect and I value community. I have seen what happens when distrust, discrimination, stigma and blame hits community groups.
Still, sitting around writing about things is not enough. You have to get out there and support the community. You have help promote the values of what brings us together and share ideals. So for this blog, I was delighted to help support Black History Month over in West Sussex. Crawley Musuem held an Exhibition of Black history month with community group “DIVERSE Crawley”.
As a reminder, Black History month has been celebrated in the UK since 1987. The celebration presents an opportunity for everyone to reflect on the past and think about how to improve things for the future. The month-long spotlight allows discussions to go past those of racism and slavery and look more to black leaders, many of who’s legacies touch daily lives.
I was there supporting Carers Support West Sussex who do so much for unpaid carers. With approximately 30,000 registered carers supported by Carers West Sussex. Their charity runs Support Groups and a Carer Response Line. They also assist carers in accessing necessary equipment and funding for their well-being. Additionally, Carers Support West Sussex offers counselling, call back services, and well-being support, with teams stationed in major hospitals. As soon as I arrived Adeelah Khan who is the Carer Engagement Co-ordinator greeted me. I also met their mental health carer engagement to Sussex Partnership NHS Foundation.
The Black History month event opened with African drumming session while the host Marilyn Le Feuvre who is the DIVERSE Crawley Co-Founder and Chair, made sure attendees where welcomed and looked after.
African Druming Session to Start Black History Month Exhibition
It was not long before crowds formed and the Lord Lieutenant of West Sussex Lady Emma Barnard arrived. She was also joined by High Sheriff of West Sussex – Andy Bliss and Crawley Mayor – Cllr Jilly Hart. We were then taken up to the exhibition on the first floor where we heard speeches from each of the attendees.
Their speeches struck an accord with me, I am not sure what Crawly does, but their community seems very close and connected. They all spoke about what Black History means to them and the importance of such an exhibition and event.
After the speeches it was not long before Lady Emma Barnard cut the ribbon to Launch the exibition
We were then given a tour of each exhibit including the impact black people have made to the NHS. The importance of Windrush and the struggles black people faced on arrival. We also heard about the positive things about Black History on what bring people together and sharing culture.
I was honoured to see my poem as part of the exhibition at the musuem and I even actually read the poem for the audience.
This was again thanks to Carers Support West Sussex who spoke about what they do for the community and how they feel unpaid carers are part of the community.
We learnt of African fashion and got to hear various African songs from the young and old. I took the time to place the audio below.
Ugandan National Anthem
Next we heard another poem about the impact of Windrush, which was wonderfully read out by Irma Stuart-Tei who is co-founder and Deputy Chair of DIVERSE Crawley.
Then we were given more details about black history including the case of Kris Karba, Stephan Lawrence and the importance of Black Lives Matter. The talk was supported by Crawley campaign against racism who spoke how together we can all contribute to tackling racism and discrimination.
There were talks about why Black women are three to four times more likely to die from pregnancy-related. The importance of diverse barbie dolls. There was so much presented, that I could not possibly cover them all. There were futher presentations downstairs followed by African and Carribean food.
All in all, I felt this day was the highlight of several weeks as I have been occupied by so many things. I was impressed on how much work and effort placed into the event. Again, I am not sure how Crawley community does it. They work together tirelessly to promote what community is all about. Please check out my video compliation of the event.
Looking forward to more things from Carers Support West Sussex and some other carer centres around the country. I also left my book with the carers centre regarding “Race, Caring and Mental Health”. The book promotes ideals of NHS England – Patient Carer Race Equality Framework.
Welcome to another blog post by Matthew McKenzie carer activist and one of the carer network ambassdors for Cygnet.
As of this month for October 2023 it is Black History month. This month is a special theme for me since the theme is ‘Saluting our Sisters’. The theme highlights the crucial role Black women have played throughout history.
There are so many famous black women throughout history
Rosa Parks – for her courageous participation in the Montgomery Bus Boycott to push forward the civil rights movement against racial segregation on public transport.
Maya Angelou – who was famous for poetry and also a civil rights activist.
Mary Seacole – Contributing to medicine and nursing where she even helped British soldiers being injured in the Crimean war while fighting discrimination.
There are of course many more famous black sisters who are far too numerous to mention, but the above have shows the importance history plays in shaping our lives.
Still, I want to focus on someone very special and dear to me as she has not only shaped my life, but in a strange way inspired many others. Around 2019 during the pandemic the country was fighting an unknown and dangerous virus. That virus turned out to be COVID-19 and the outcome changed my life. My mother struggled with her mental illness in her later years, which in turn led her to also struggle with her physical health. With resources running low in the health service my mother was the unfortunate casualty of dwindling health resources during the pandemic.
Like so many other vulnerable groups. My mother did not actually die of virus, but just could not access emergency healthcare as resources were focused on covid victims.
The impact left me wondering what could I learn from my many years of caring for my mother. I had a choice either to share my story to other carers or completely move in another direction of my life. I made the former choice, because it helped me heal and also pay rememberance not only to my mother, but to myself.
So around 2020 I wrote my first book about my experiences as a mental health carer. The book was called “A caring Mind”, which was named after my blogsite which was born raising carer awareness after writing blogs for South London & Maudsley NHS trust.
Even when caring for my mother, I was also helping to care for an old friend who also inspired me to write. However it was my mother Rosemarie McKenzie who spent so much time writing poetry. My mother also wrote stories and even managed to get a story published in a magazine while she was struggling with mental illness.
My mother enjoyed singing and used to sing at our local African/Carribean community centre (family Health ISIS) that catered for those struggling with mental illnes.
Rosemarie McKenzie to the left dressed in white
My mother inspired many other clients at the community centre to be creative with poetry, singing and writing. It did not matter the mental struggle other clients was going through at the centre. They saw my mothers, as long as they could be creative, it helped them express traumatic feelings in a positive way. This was one of my mother’s strengths. No matter how many times she was would suffer with her health, she always found strength to be more than her illness. She made me find cause in highlighting awareness for vulnerable groups. This in turn led me to continue writing and using creative ways to express my lived experience.
Of course I could never fully understand my mother’s illness and could only express my mothers creativity as a dutiful son and a mental health carer. In the end I feel we cannot always look to the famous and fortunate of our black sisters. We all contribute to history in our own way. My mother used her own creativity to tell her story and I will continue that story hoping to contribute to black history.
Welcome to a quick update of the London cancer support and engagement forum. The group is for those caring for someone diagnoised with Cancer. Just a quick message regarding a carer. A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.
My focus on carers are those caring for someone with mental ill health or cancer. For the September group, which is run online we were joined by some new carer members. One was from NHS England giving support to the new group. We started off with a peer session as those caring for someone with cancer wanted to share their experiences. Most members who attended had loved ones recieving pallative care due to the late stages of cancer.
We then had our guest speaker who kindly engaged are carer members. The speaker was Gabrielle Brown who spoke about her paper “How pancreatic cancer impacts carers in the UK: why do we know so little?”.
Gabrielle Brown is the Staff Nurse, Guy’s and St Thomas’ NHS Foundation Trust.
Her paper sourced in the British Journal of Community Nursing . Jun 2023 looks at how Pancreatic cancer is a disease with poor life expectancy and high symptom burden.
The experiences of the spouses, family and friends who care for this group is poorly understood, especially during palliative care and within the UK.
The Aim of the paper is to highlight the current gaps within research and provide some insight into the challenges faced by carers assisting those living with pancreatic cancer, and how community nurses can support this group.
Gabrielle talked about the number of unpaid carers and how important they are to health and social care. She mentioned the World Health Organisation guidelines and the challenges of them being followed. There needs to be offered need assessments for both carers and patients.
Gabrielle pointed to the recent Carers UK survey which highlighted a lack of support for carers. She then mentioned the situation pallative care discharge issues and what here paper raised regarding carer guilt and grief, especially if their loved one had a short life span due to cancer.
When agressive cancer does strike, it shows the carer had a lack of time to adjust and this ends with an increased level of anxiety and depression.
The group were interested in the talk and raised several questions. This concludes a brief update of my London cancer caregiver forum.
Live in Lambeth? Healthwatch Lambeth are marking World Mental Health Day for Wednesday 18th of October. The aim of Healthwatch is to give citizens and communities a stronger voice to influence and challenge how health and social care services are provided within their locality.
World Mental Health Day 2023 is an opportunity for people and communities to unite behind the theme ‘Mental health is a universal human right” to improve knowledge, raise awareness and drive actions that promote and protect everyone’s mental health as a universal human right.
Welcome to another blog post from carer activist Matthew McKenzie. As a carer I find it vital that carers of those going through mental ill health get a chance for engagement from services. Friends and families tend to hidden away supporting their loved ones. They want the best support, but often struggle to be heard.
As one of the carer ambassadors for Cygnet health care, I was delighted to attend and support their latest carer network event. There have been a series of carer network events taking place around Cygnet sites and the latest one was held over at Cygnet Hospital over in Harrow. The event was planned in coproduction by Laura Sheridan Group Service Improvement Manager for Cygnet. Laura helps lead on the carer network programme and triangle of care focus at Cygnet.
For our latest carer event we had a fantastic line up of speakers. Cygnet health care want carers to be part of their network and want carers to be involved by leading from the front. Our first speaker was Lesley Mellor who is Parent Carer. She is also one of the carer ambassadors for Cygnet health care. Lesley shared her knowledge about the importance of including carers and the promise that Cygnet health care will be there to support unpaid carers.
The next speaker was Sharon Spurling who is the Triangle of Care Programme Lead at Carers Trust. Cygnet Health care wants to strenghen its policies to have that carer focus. The triangle of care programme offers that chance to raise carer identification and engagement to the highest standard. Several of Cygnet hospitals are working on triangle of care standards at their sites. With carers at our latest network event, it was a chance to promote what triangle of care is all about.
We also had Julie Garbett present about Julie is a Regional Nurse Director (London and South), Cygnet Julie is a registered mental health nurse of 20 years, with a vast range of experience gained working for NHS Mental Health Trusts and CMHTS in the South East. Julie spoke about how important carers are to Cygnet. Julie helped identify how carers are not just one group, unpaid carers can be anyone.
At the event carers were looked after with a lovely meal and a chance to network with speakers and with other carers.
We then heard from Matthew Gill who is Director of Psychology Services Midlands at Cygnet. He is a Consultant Forensic Psychologist with over 20 years of experience. Matthew is a committee member for the British Psychological Society and an AIMS assessor for the Royal College of Psychiatry. Matthew spoke about the importance of talking therapies. You can see from one of the slides on what Matthew covered below.
It was important we get to hear from the lived experience voice of the carer. Julian de Takats – Parent carer told his story and his thoughts about the carer experience. Julian as another carer ambassodor for cygnet health is passionate about carers being able to network and working together in a peer environment. Julian worked in the music industry before accidentally becoming a carer. Julian has been an active member of the Cygnet Carers Network since 2022 and is now proudly an Expert by Experience Carer Ambassador.
Next up to present at the carer network event was Dr Richard Church who is the Medical Director, Cygnet Hospital Woking. Dr Church studied medicine at the University of Cambridge and undertook general psychiatric training at South London and Maudsley NHS Foundation Trust. After working in the NHS for over 15 years, in November 2017, Dr Church joined Cygnet Woking as Medical Director and Consultant Forensic Psychiatrist. Dr Richard spoke about the barriers carers face when speaking to services. Richard gave an honest presentation that cygnet also faces challenges when working with carers, but he also gave thoughts on how cygnet with working with those challenges.
My thoughts summing up the event
The location, theme, presentations and speakers were excellent. Time and time again I state it is important the mental health, social care and health providers hold engagement events on what they offer to carers. It is not enough to promote an offer to carers as unpaid carers need to be involved and also need empowered to network, develop peer skills and work with providers.
Cygnet health care are setting an example that carers play an important part of recovery. Carers should not be hidden away struggling to support and provide care. I do admit that health and social care is struggling with the challenges they face, but we all need to work together. I hope we continue to reach out to carers, promote carer focused policies and be held to account on our promise to carers. This is a new journey for cygnet, but we want to share the journey with our carers.
Welcome fellow unpaid carers. This blog focuses on those caring for someone suffering through mental illness. I chair the Triangle of Care community meeting. You might have already heard about Triangle of Care from national carers charity Carers Trust.
Basically the Triangle of Care describes a therapeutic relationship between the patient, staff member and carer that promotes safety, supports communication and sustains wellbeing. Many NHS Mental health trusts across the country have taken up the challenge and signed up to the scheme.
However if you are a carer, knowing about the triangle of care is not enough. You should try work out what your NHS trust is doing with triangle of care policy.
Some questions you could ask
Have you as an NHS organisation signed up to the triangle of care?
What are your plans to get feedback from carers to help shape triangle of care at your organisation?
How do you promote triangle of care to unpaid carers?
How is triangle of care helping to change the experiences of carers at your NHS organisation?
There are many more questions to ask senior NHS staff at your local mental health trust, but it is so important carers do not just blindly accept carer policies without some scrutiny.
We have our next Triangle of Care community meeting for 21st of september. See below.
Remember, unpaid carers also use services and it is their right influence or feedback experiences of health care.
Hello fellow unpaid carers. A new blog post from carer activist Matthew McKenzie. I am promoting new research into treatments for sleep problems with breast cancer patients.
Sommer Agnew from Strathclyde University is researching on sleep problems in breast cancer patients, a very common issue in this population. They are currently conducting a study to investigate whether supporting breast cancer patients to improve their sleep could help them to take their hormone therapy medication (e.g. Tamoxifen, Letrozole), as many struggle to take hormone therapy medication due to side effects like this.
The research is offering a remote, evidence-based intervention called cognitive behavioural therapy for insomnia, which is the recommended treatment for sleep problems. She is looking to recruit people who struggle with their sleep, are prescribed hormone therapy as breast cancer treatment, and who sometimes find it difficult to take their medication as prescribed (e.g., feeling the need to take a break from their medication, or forgetting to take medication sometimes).
Anyone who may be interested can contact Sommer directly through email (sommer.agnew.2019@uni.strath.ac.uk), the study Twitter (@SleepinBCStudy) or leave an email address through the following link if they would prefer for me to contact them:
Welcome to my first ever update of my London cancer carer forum. This carer forum is different from my other carer forums. The major difference is this forum focuses on families, friends and carers who care for those with cancer. My other 5 groups focus on those caring for someone with mental ill health.
This forum runs on the last wednesday of the month and covers the whole of London. The forums main focus tends to be hospital engagement. Cancer Alliance and cancer leads at hospitals should have a keen interest to support carers who try navigate the cancer pathway.
For August we had our peer session to hear what challenges cancer caregivers face. If those seeking to improve cancer services do not engage at grassroots level then we risk guessing what challenges people face. It is so important to network and educate each other. It is very important for carers to be empowered to network especially for a peer supportive environment. It is impossible for me to be everywhere, so with a network we can have members looking to attend cancer service engagement events. Carers should be encourage to feedback their experiences.
For our very first London cancer caregiver group we were joined by Professor Tracey Devonport from the university of wolverhampton.
Professor Tracey is from the Faculty of Education Health & Wellbeing and although she presents at my ethnic mental health carer group. She has a large focus on cancer care research. This also includes research on cancer caregivers.
For our August London Cancer caregiver group. Professor Tracy presented on “Coping Conversation’s for Cancer Carers Forum”.
Prof Tracy ran a presentation and session on coping skills for carers who often can find themselves overwhelmed when providing unpaid care.
Each member of our group fedback what challenges we face when providing unpaid care. We also gave ideas on what we use to help us cope. Tracy presented her ideas on Dyadic Coping
All in all our forum worked out ok. There is still a lot of work to do as the group looks to develop the following.
Increase a chance to feedback experience
Learn about your role from other carers
Engagement from hospital services
Develop a cancer caregiver network.
Learn about the peer environment
Engagement on university research
Increase the focus on those who care for someone with cancer
Another post from carer activist Matthew McKenzie. This blog is aimed at those caring for someone with cancer for the South West of London.
Exciting news!
If you are interested in future south west London lay representative roles.
Community Design Leads will help Royal Marsden Partners cancer alliance design future south west London lay representative roles for various cancer meetings.
They are looking for people who live in Richmond, Wandsworth, Merton, Kingston, Croydon and Sutton.
You will need to be able to attend:
Three 1.5 hour meetings – these will be online on Microsoft Teams on the following dates:
Thursday 14th September 1.45pm – 3.15pm, South West London Cancer Board
Thursday 12th October 3.30pm – 5pm, Clinical and Operational Board
Thursday 19th October 10.00-11.00am, Executive Board Meeting
Join a pre-meet for one hour before each meeting – to help you prepare
Join a follow up meeting for one hour after each meeting.
As a thank you for your time you will receive a £150 voucher.
Why they want to co-design these roles with you:
By working with local people to design these new lay member roles they can make sure they work well, that lay reps are supported, that they are able to contribute to the meetings effectively and make a difference.
You:
You don’t have to have had significant experience of using the NHS or being involved in formal board meetings to undertake this work. This is important that carers are included to shape services.
This is a great opportunity to:
share your experiences of the meetings,
make a difference and help us improve how we hear from local people, acting as lay members, in these meetings
help us understand what matters to people and our communities
enhance cancer related services for people across south west London.
To find out more about the role please contact Kath Malhotra for further information: 07801216768
If you are interested in the role please download and complete the form below and send to rmpartners.admin@nhs.net
Deadlines for applications: 30th August
Informal interviews will take place virtually on Wednesday 6th September.
A Caring Mind 