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.
Been a while since I have done a blog to update the carer forums and groups that I run. I thought to avoid the summer heat and stay inside in order to provide a brief update of the National ethnic mental health carers group for July.
The agenda for July was support from Carers UK who are a national charity fighting for the voice of unpaid carers in the UK. There are millions of carers providing care and support for someone with long term illness. This includes minority carers.
Carers UK presents on the Impact of caring.
Carers UK examined the latest Office of National Statistics and how those figures showed the impact of caring. It is good to get an overall picture of caring through the country.
For the ONS census of 2021 – The Office for National Statistics showed
There are an estimated 5.7 million carers in the UK
1.8 million care for 9 hours a week or less
1.5 million care for 50 hours a week or more
Every day 12,000 people in the UK become carers
Carers UK provided some information aimed at those caring for someone with mental illness. This was that not everyone with a mental illness needs a carer, and not everyone who needs a carer has one. People with mental illnesses have lots of different needs like anyone else, and these will affect the support they need.
Early last month I did a joint talk with someone from Mind who are a charity that focuses on support for those with menta illness. Carers UK reminded members of the forum about the resources Mind has on their website.
Carers UK were also kind enough to speak about the impact of caring on minority ethnic carers. Carers UK presented how experiencing mental health issues, may make the caring role even more challenging. Rates of mental health problems can be higher within some Black, Asian and ethnic minority groups, as a result of racism and discrimination, and social and economic inequalities.
Carers UK also noted that experiencing prejudice, discrimination or harassment when accessing services can lead carers feeling distrustful of support services as a result.
This can also be down to struggling to obtain information and advice due to language barriers, plus not having the opportunity to shape and influence health and social care services. Some carers may feel that they have no ‘voice’ in the system, and feel unable to complain or raise concerns about services
Carers UK give a wealth of information and resources aimed at unpaid carers and those who support carers. Carers UK representative Zahra presented some of the amazing resources that carers can use.
Update from members of the group.
As usual the national ethnic mental health carers group supports the NHS England framework, which is the Patient Carer Race Equality Framework. The forum provided space for carers involved at their NHS trust to update. We had updates from West London Health trust from their recent PCREF listening events.
We also had an update from Wandsworth talking therapies, where they updated on the recent “Bridging Minds” forum and how the community of Wandsworth provided feedback their experiences on the impact of racism and discrimination. I also managed to attend the forum, which was supported by Wandsworth Carers (see poster below).
There was an update and engagement from Oxleas on their focus for ethnic minority carers, but there is still more work to do. Other updates were from carers involved at Cambridge & Peterborough NHS trust and also Kent & Medway NHS trust, plus Cygnet who is a provider of mental health services.
For the forum on the 30th of August, we will look at the topic of carers rights.
Thanks for checking in. I have exciting news for carers from an ethnic background. Wandsworth Carers are running their Bridging Minds forum on the 19th of July from 3 pm, which will take place at Balham Library Hall, 16 Ramsden Road, London, SW12 8QY
BAME forum will be Facilitated by the Community Empowerment Network, Wandsworth Carer’s Centre, NHS Wandsworth Talking Therapies
The forum will focus on discussions around race, ethnicity, and culture in relation to mental health. The forum will feature culturally specific foods, and all Carers who sign up and attend will receive a £30 supermarket voucher as a token of our appreciation for their time and input.
I will certainly be attending this exciting forum and hope ethnic carers who support those with mental illness from the borough of Wandsworth can drop by.
To book please email either Lindsey.cross@soundminds.co.uk or panashe@wandsworthcarers.org.uk
Welcome back to another update from Carer activist Matthew McKenzie. I have some exciting research in which carers can feedback their experiences.
Ella Rose a researcher from University College London is conducting a study focusing on the experiences of carers from ethnic minority backgrounds of inpatient mental health care in the UK. There are currently very few studies documenting the experiences of ethnic minority carers of mental health services. She hopes this study will fill an important gap in current research and help identify the specific needs of ethnic minority carers, and how services can best support them.
Participation in this study will involve a one-hour interview to discuss their experiences as carers of a loved one receiving inpatient mental health care in the UK, their views, and their support needs. She is recruiting individuals over 18 who identify as being from an ethnic minority background and who are carers for someone currently or previously admitted to inpatient mental health care within the last three years. As a thank you for their time, she will offer participants a £25 voucher.
To take part in the study please see the poster below or email Ella at ella.rose.23@ucl.ac.uk
I have great news regarding my poetry projects. I have now published the special edition of the poetry book of mental health caring.
The audiobook provides poems about the unpaid caring role, quite a few poems focus on what it is like to provide care for someone suffering mental illness.
This audiobook not only has the audio version of some of my older carer poems, but also contributions from unpaid carers around the country. Close to 3 hours of poems.
Thanks to the many carer centres supporting the project.
You can purchase the audiobook via Google Play for £2.40. Here is the screenshot below, where you can listen from your computer, or play the audiobook from your phone or tablet.
The audiobook contains over 100 poems and can be purchases from the link below.
Here is my latest blog post from my carers website. This site focuses on events, thoughts and awareness of unpaid carers, especially those who care for someone with mental illness or suffering through cancer.
For Carers Week 2024, I was back over at the Maudsley site based in the London borough of Southwark. South London & Maudsely were doing a special follow up event from their Carers conference held last year for 2023. During the conference, many carers contributed to a number of poems which has led to the a carer poetry book.
The carer poetry book event took place over at Maudsleys NHS training and events centre, The Ortus.
Over the years, I have attended many mental health and carer events, including attending meetings and engagement events. It was with great pleasure to attend a poetry book launch which was driven by carers from the boroughs of Lambeth, Southwark, Lewisham and Croydon.
The event was opened by Gabrielle Richards who is the Head of Inclusion, Recover and Professional Head of Occupational Therapy and Allied Health Professionals at South London & Maudsley. Gabrielle also oversees Triangle of Care at the NHS mental health trust.
Gabrielle was joined by carer Faith Smith and Ann Morgan who led on the ideas for poetry inclusion from carers who attended the Family and Carers listening event
Faith and Ann read a number of poems while commenting on the poetry books development. We also heard from Rob Frowen winner of the 2017 Carer of the Year Award and Chair of Lancashire & South Cumbria NHS Foundation Trust Service User and Carer Council.
You can also view Ann reading a poem below.
A large number of carers also took turns to read some poems including carer advocate Brenda.
We were also joined by Carer and poet Jo Lambet and myself who also promoted the importance of poetry and how carers can connect and tell their experiences through creativity. Later on during the event, I spoke about the importance of poetry and how this can help carers relate to each other while exploring their experiences of caring and sharing this with others.
I also did a spoken word section from the poetry book I released in 2023, which is being edited into a new edition to include poems from unpaid carers around the country
You can view the section of myself and Jo performing some poetry and my talk about the importance of including carers to give space to poems.
I enjoyed the carer poetry book launch event and hope the book can make history or at least show how carers over in South London can be included to experess their exprience of care via poetry.
Welcome back to another of my carer blogs during Carers Week 2024. Lots of carer engagement and awareness events are still taking place as we are midway through Carers Week.
As a Cygnet Carers network ambassador, I was proud to be invited to present on my thoughts for Carers Week and the focus as to why families, friends and carers are important to Cygnet. The event was the “National Carers, Families and Friends Network Event”. This event took place over at Cygnet Churchill on Thursday 13th June 2024.
As I entered the premises the Cygnet staff were friendly and welcoming, I felt relaxed but excited at the same time. Looking at the event agenda, we had some excellent speakers for attendees both professional and families and carers.
David Willmott who is cygnet’s Director of Nursing opened the event. David spoke about Cygnet’s passion to engage with carers, but to get it right we need to consider families and carers as the experts.
With the ideas of cygnet’s Carer lead Laura Sheridan, Cygnet has made lots of progress, but there are still many things to develop.
David spoke how important it is to develop ideas with the audience and introduced who was going to speak.
Matthew McKenzie presents the importance of Carers Week
When David introuced my session to present to the audience, I spoke about the importance of Carers Week 2024. I have been a carer most of my life regarding my two brothers, but things became immensely difficult when my mother became diagnoised with schizophrenia. For many years I cared alone for 3 people and the impact it had on me was horrendous. I still suffer the scars of unpaid caring experience, but with the support of Carers UK and Carers Trust I feel I can cope.
My caring role led to carer activism, a powerful role that helps engage with whole communities and charity organisations. I spoke how busy I was doing Carers Week and even provided a poem or two which you can see below.
Also speaking at the event was Dr Neil Churchill who is NHS England’s Director of People and Communities. Due to the election Dr Neil could not say much, but did speak about his own carer experiences and the importance of the NHS. Dr Neil also mentioned what is currently available for carers under the NHS, but things could change.
Next up to speak was Nisha Cunnane who is Cygnet head of Pharmacy Services. Nisha spent 25 years working in Various phamacy settings, including hospitals and prisons. She is passionate about patient education and empowerment, this includes caregivers as she promotes they have a pivotal role in enhancing the overall well-being of the cared for.
Nisha spoke about Empowering Carers when guiding them through medication management. She spoke about what medication management actually means and their challenges to unpaid caers.
These challenges would be carers being overwhelmed with multiple medical factors and trying to avoid the risk to potential medication errors. Spotting side effects are also very important to caregivers of those with mental illness, but it also helps to tackle communication barriers with healthcare providers.
Nisha also spoke about medication adherence and top tips for carers and families. She answered questions about medication safety and medication side effects and she also pointed out the importance of collaboration and access to information.
We then had a carers story and her focus to engage with other carers. This was Veronica Kamerling and you might have remember her from the series of carer activist interviews I am currently running.
Veronica spoke passionately about caring for her two daughters who both have an eating disorder, verconica also spoke about caring for her brother who was diagnoised with schizophrenia. Due to her lived experience and carer activism, she runs her own organisation “Eating disorders & Carers”. She has been associted with Triangle of Care for many years as Cygnet strives to embed the Triangle of care in their hospitals.
Listening to Veronica drove home the memories and experience of my own caring situation. It reminded me why I try so hard to engage and involve unpaid carers in my network and also Cygnet carer’s network.
Other speakers were Julian De Takats who is a Parent and Carer. He is also a Cygnet Expert by Experience Carer Ambassador and helps provide carer awareness training at many of Cygnet hospital sites. Julian’s talk helped remind why it is so important to involve carers in shaing services.
We also had Juliana Onwumere from the Institute of Psychiatry, Psychology and Neuroscience speaking about their focus on families and carers, especially with the new online course for training carers about Caring for People with Psychosis and Schizophrenia
Unfortunately I could not stay for the full event as I was required as a judge for Harrow Carer’s Awards for 2024. Harrow carers ran their “Carers Family Fun Day” for Carers Week 2024. That is another blog for another day.
However for the National Carers, Families and Friends Network Conference, I felt Cygnet put a lot of work into presenting why they do an amazing amount of energy to set the standard of involving unpaid carers.
It is mental health awareness week 2024. The theme for this year is “Movement: moving for our mental health.”.
The charity Mental Health Foundation has been running Mental Health Awareness Week for 20 years and it continues to grow stronger in raising awareness.
Please watch my video on the importance of Mental Health Awareness week.
To help promote and celebrate mental health awareness week 2024
1. Sign-up for an active challenge event! 2. Wear a green ribbon to show everyone that you care about mental health. 3. Learn about mental health by attend events online or locally.
Mental Health is every ones business and we must recognise and support our own mental wellbeing
A Caring Mind 