Welcome to my latest blog about my new book. My name is Matthew Mckenzie a former mental health carer who cared for his mother who suffered from a form of schizophrenia.
I have decided to highlight chapter one of my book “Experiencing mental health caregiving”
The first chapter explores what unpaid mental health carers feel about their identity. Each chapter of my book asks several intriging questions about mental health caring, which of course focuses on unpaid carers e.g. families and friends caring for someone close suffering mental ill health.
Carer Identity
The first question I asked carers on chapter one, which is “Carer Identity” was “What does it mean to be a mental health carer?”
You can see the video of this below below
The reason I asked such a question is that those who suddenly find themselves providing care might find some of the answers useful. Perhaps even NHS professionals or social workers might find the answers important.
I will pick out a few responses that I found highlighted the importance of carer identity.
One carer responded as
“I think that it’s difficult. Often nobody other than the carer can see the disability with the person that you’re caring for. And so, they go unnoticed. Plus with mental health, it fluctuates and dramatically as well.“
Another carer felt
“For me to be a carer of a mental health patient has turned my world upside down completely. This is different when you caring for somebody outside your family, but when it is someone in your family then it is an application of emotional attachment.“
Another carer summed up “My own identity disappeared in the beginning of my caring journey. It also means getting acknowledgement from healthcare professionals that I am an important person in my loved one’s care“
What I thought was interesting is how difficult it was starting out caring for someone suffering mental illness, notice the responses all mentioned how tough it was when they first started out caring. Although certainly take note, I have only shown some of the responses here as others in the book might be different. One thing to note is some carers might find the role gets easier depending on their knowledge of the illness or the support they may get from services, community or other members of their family. This might not be the case for all unpaid carers.
For chapter one I asked around 8 other questions regarding carer identity and if you are interested about mental health carers, you can buy my book on the video link description.
Happy new year to visitors of my mental health carer blog site. As mentioned in my earlier blog posts, I am working on promoting awareness of caring for someone suffering mental ill health.
I created a number of carer poems, quite a few are on this site, but are subject to being edited as I am often fine tuning poems.
I am also adding a couple of my poems on to my YouTube platform and will blog them every so often.
The poem I want to introduce here is titled “On Alert” as it highlights the struggle unpaid carers go through in prompting medication. A lot of carers hate doing such a task, but when the experience the person’s mental health crisis, they want to try avoid the situation again and take resort to being on alert.
Watch my 2 minute poem “On Alert” off my video link below.
Welcome to my brief update of my joint Southwark & Lambeth mental health carer forum for October 2021. As with my other carer forums, this forum runs once a month and provides a platform for health & social care organisations to engage with those who care for someone suffering mental ill health. The primary focus for engagement is obviously South London & Maudsley who heavily support the carer forums, however a fair bit of the time the forum gets engagement from other parties, this could include Kings College NHS trust or Guys & St Thomas who also advertise the carer forum.
Speakers for October were
Dr Siobhan O’Dwyer – Spotlight on Care
Danny McDonagh – Employment & Education Engagement Worker (Mosaic Clubhouse)
Welcome to the October update of my Greenwich Mental Health carer forum. As with my other carer forums, this one focuses on engagement from the local mental health NHS trust that covers greenwich, that being Oxleas MH NHS trust. I run this forum with heavy support from Greenwich carers who fight and advocate for the needs of unpaid carers in the Royal borough of Greenwich.
Speakers for the October Greenwich MH carer forum were
Peter Ley (Oxleas NHS) – Service Manager Sue Horbury (Oxleas NHS) – Online Patient system Laurelle Morgan Bruce (Oxleas NHS) – Oxcare
Welcome to a brief update of my South West London mental health carer peer forum. This group is a mixture of carer peer support and mostly engagements from health & social carer organisations, especially the local mental health trust South West London & St Georges. This carer’s group cover’s 5 boroughs as all 5 carer centres including the mental health trust work hard to promote it.
South West London & St George NHS
An extra bonus of this group is I do open it up to national speakers so the following speakers for September
Welcome to another brief update of my BAME mental health carers forum for October 2021. I have not been reporting off my carer forums that much due to finishing up my latest book about mental health carer experiences.
You can by my latest book on the link below.
You can also find an overview of chapter 1 from my YouTube channel below.
I am now working on my 3rd book which will be a large number of poems also on the carer experiences. It is not set for release until 2022, although I have been reading out my poems at carer groups for preparation.
The carers forum usually runs once a month and its focus is on ethnic diverse carers who are caring for someone with a mental health issue, although the forum started in Lewisham, it has expanded with the support of mental health services of Oxleas, so it has extended to Bromley, Greenwich and Bexley.
Speakers for September 2021
George Hosking OBE CEO of Wave Trust – Wave Trust on Young black wellbeing
Dr Tim Ojo – Psychiatrist on Black History Month Reflections
Doreen McKenzie – Black History month Poetry
Emilie Wildeman – Patient Research project at Institute of Psychology, Psychiatry and Neuroscience
Lara Sengupte – Breakfast Clubs again Racism.
This particular forum focused a lot on Black History month which ran for October 2021. One of the speakers from NHS England & Improvement could not make it, but they did attend my BAME carers group for Novemeber, which I will blog about soon.
George Hosking OBE presents on his project for youth mental health
George Hosking CEO of Wave Trust spoke about his charity, which helps to prevent children suffering child abuse, neglect, and those witnessing domestic violence in their homes. Over a number of years, the charity has become very aware of the impact on mental health, which has led to people suffering childhood trauma in some kind or other. George mentioned a huge number of mental health problems can be traced back to childhood experiences in that way. George stated the charity has experts on trauma. He himself is a clinical criminologists, psychologist, and traumatic stress counselor, his charity supports organizations and individuals to learn how to support people who have suffered trauma in their lives.
George included that one of the things they do is they help set up trauma informed communities around the UK. These are communities which really try and provide the best possible support to people who have suffered some form of trauma in their lives. This includes a lot of people with with mental health issues and these communities can be of two types. They can either be created top down by working with the NHS and local authorities and police to create a rather statutory based organization, or else it can be created from the grassroots working away from individuals in the community. They have been working now for about two years with the Black and ethnic Community where the charity is based, leading to creating a trauma informed community.
George was thinking about the possibility of doing some trauma informed community work in Lewisham, due to Lewisham Council recently inviting organizations to make an application to provide emotional health and well-being training to those working with young people in leadership.
What his charity is looking for is people who will help young people to spot the signs of poor mental health, and guide those young people towards mental health support especially in the black community. WAVE charity has got a background on this because of their knowledge of trauma and mental health, that they can provide that kind of guidance and support. They have got the facilities to train people to be more adept at doing this sort of thing. Unfortunately what they don’t have is the links in Lewisham to people who are working with young people, particularly people who are working with young people with an interest in mental health. George did realize that our forum’s focus is very much on carers rather than supporting young people. He did do a Google search to look for an organizations in Lewisham with interest in mental health and thus Matthew’s forums came up.
So George contacted Matthew who kindly invited him along today just in case, someone from within carers forum is aware of or are even interested in what that charity could potentially allow involvement in.
Lara Sengupte presents on Breakfast Clubs again Racism in Lewisham
It was Lara’s turn to speak about her project and how it came about. They are currently in the pilot scheme phase. So they have been running projects since July, and the piloting finishes in December. By then they are going to be analyzing the results of the clubs. They run two breakfast clubs, one in Catford, and one in Peckham (Southwark). The goal is basically to educate young people on racism, how it shows up in society, and how to combat it. This particularly on internal racism.
Lara knows for a lot of young people of color, which relates to mental health, that can carry around a lot of negative self talk and negativity, all the negativity that we see in the media, and through like school exclusions there is a lot of racism against young people of color. The big challenge is that young people and children don’t exactly know how to process it. So that’s one thing that our clubs want to tackle. So they are running educational Saturday breakfast clubs for young people throughout autumn term. This is not just for Black History Month since they have been running them since September, and will finish them in December. Our clubs have got about 10 weeks with the kids where the purpose of the breakfast clubs is to teach young people about racism, how to challenge it in a safe space surrounded by like minded peers.
So all the kids that are signing up to the Breakfast Club all care about racism, and all care about combating it. So they can share ideas in a safe space, that perhaps in a school it would be different. The clubs don’t just cover personal racism, they also look at deep institutional racism, and internal racism that is often carried around by young people of color. This can show up as negative self talk or self destructive behavior. So the clubs give the students an understanding of the societal problems that we have in this country. The clubs also work on self confidence and leadership skills to empower the young people and children to take action where they can.
The breakfast clubs next session was in October where the clubs work with young people from around like 10 to 14, but they are also quite flexible and ages.
A while ago Dr Tim a psychiatrist wrote a piece for the Royal College of Psychiarists regarding the importance of Black History Month, which you can see below.
Dr Tim has been very busy promoting equality through the power of psychiatry and I felt it important to invite him to engage with BAME carers and even NHS staff.
Dr Tim felt it was a pleasure and a surprise for Matthew to connect. Dr Tim spoke about the piece he wrote for Black History Month in 2019. He is a psychiatrist by background of British born, But his heritage is in southwestern Nigeria and as part of the Royal college of Psychiarists celebration of Black History Month, which became something only a few years ago, he was invited to write a blog. Dr Tim is an associate Registrar for policy support the college. That means the things around the Royal College of Psychiatry led to reports and statements that they make, in addition to supporting people with mental illness, their families, and communities. This includes Improving the mental wellness of society in private colleges, professional body for all qualified psychologists.
Dr Tim felt what was the important facets for Black History Month is a special where we come to terms with the fact of needing to understand history from the perspective of recent events. This has happened after his blog has shown that reflection point where it’s absolutely necessary, where people of color and their white allies think about history from a different perspective, because for too long, it’s been written from the perspective of one vantage point, that vantage point unfortunately positions, people of color, black folk, particularly at a disadvantage in producing narratives that arent helpful, realistic, and are incomplete. So what he thought Black History Month now takes upon an additional layer of importance, because first of all, it is about a celebration, about the fact that across the world cultures, black people have come together even in the face of suffering, can celebrate on resilience and psychological robustness that is happening through the facets of our history, and throughout our communities. Dr Tim felt we can find people, individuals and communities doing great things where it reminds us that we have a history of a human or a connected global trajectories of history that we assume we have music culture, we have literature is important for all of us as human beings to function make no apologies for our issues about how do we use structural position to address questions of inequity and problems inclusivity in society. Dr Tim feels as carers we can speak to a very important aspect of the black community in terms of inadequacy of access narrative support.
Dr Tim also thinks having four electives is important to come together to illustrate actually, every month, although Black History Month appears once a year. it’s important for people to focus on sharing stories, not as a disadvantage, but through the use of positivity. Dr Tim mentioned where his blog gave a historical link between psychiatry in Nigeria, where the Western world in how we have trained psychiatrists who took it upon themselves to negate the negative picture over history in psychiatry, and came up with a very good book, which is called “black skin, white coats” by Matthew M. Heaton.
The book is a legend and looks at psychiatrist colonization, and the globalization of psychiatry, this led to an informed decision of him becoming a psychiatrist.
Dr Tim thinks it’s important also to recognize people like African Caribbean senior psychiatrists, who retired, but stood firm in the face of strong opposition to actually question what was happening, vision and mental services of color in this country. Dr Tim spoke more about Matthew M. Heaton on his work since the 60s and 70s, which was very important in shaping the new agenda around a shared understanding of how history is restricted, which is advantageous, specifically why he was talking about Black History Month being symbolic.
Doreen McKenzie poet and author on Black History Month poem.
I invited my aunt Doreen to read a poem for my carer group. She had two poems that she wanted to read to us. Doreen read the shorter one first. The poem was called “Proud to be black”
This woman is so darn proud to be back. Despite the fact that she’s very aware that her color is constantly under attack. Black is the color achievers with pride. Nothing will ever entice her, her beautiful black skin to hide.
She was born black, and will die the same color. And she knows many people whose thoughts are similar. She hears people talk about the blonde bombshell. But she repairs the curvaceous black hair.
Black skin really wrinkles with age. Therefore, the age of a black person can hardly be gauged. It is a mystery how many elderly people look so good, despite the fact that they are plagued with a magnitude of challenging evidences.
And when it comes to her hair, please don’t even bother to go there. It is so unique and versatile. That in just one day, it can be crafted into a variety of magnificent styles.
The Bible says that man is made from clay. So claiming to be made in God’s own image is nothing outrageous to say. Claim your blackness with gladness and pride. Because the beauty of blackness, one must never tried to hide.
You can check out Doreen’s book “The Purpose of My Life: Now, Then, and in the Future”
Emilie Wildeman presents on her Research project
Last to present was Emilie on her research project. She usually attends my groups a couple of times over the past year. She was here today to push for recruitment and to raise a bit of awareness about her study that she is conducting as part of her PhD project. Emilie is a PhD student at King’s College London. Her research is all about informal family carers for people living with severe mental illness. Emilie gave us a bit of background to the study, in many health conditions, including mental health, we know that people living with these conditions will often live with or be supported by a close family member or friend, who mental health services refer to as informal or unpaid carers.
Emilie continued to mentioend that they also know that in some relationships, there can be difficult periods that might include sort of episodes of disagreement, and in some cases, can include active aggressive behavior from one person towards another. Her research is focused on carers of relatives living with severe mental health conditions and for her study, she is looking to speak with family carers who have experienced any type of aggressive behavior from the relative that they care for. So that could include sort of episodes of verbal disagreement and verbal conflict, conflict, verbal aggression, emotional and psychological. It could be physical, it could be some sort of destruction to a property. It’s very broad. She knows that this can be a very sensitive topic, and that there can be a lot of stigma around mental illness as well as aggressive behavior. So she really want to emphasize that this project is not about passing any judgment or making any assumptions about relationships. she is just interested in exploring carers lived experiences.
Emilie hopes that through doing this research, they can help to reduce that stigma. Participation is on carers completing an interview with herself. This is around giving carers the opportunity to voice their experiences and their opinions about what impact these experiences can have on themselves personally, on their relationship with the relative to their care and also for the family.
She is also really interested to learn about “What support families and carers have received in relation to dealing with experiences of aggression”. So that could be from personal support networks, but also professional services because she wants to identify what aspects have been helpful, but also maybe where support might be lacking.
This concludes my brief update of a special Black History Month special for October 2021.
Welcome to the brief september update of my BAME mental health carers forum. The forum focuses on updates, information and queries regarding mental health services and how they impact on ethnically diverse carers who are caring for someone suffering mental ill health.
The speakers for September were
Mushtaq kahin – Her projects reaching out to the community Macius Kurowski – South London & Maudsley NHS Equality Manager on Equality updates Dr Stephen Goggins – South London & Maudsley NHS on carer’s strategy
A new research study by Cassie Lovelock will be looking into the identity of those who support someone in their life with a mental illness. Cassie is PhD student at the London School of Economics; before that she was a carer for her sister who lived with schizoaffective disorder.
The aim of her study is to learn in what ways supporting a person impacts a carer and their identity. As well as what their day to day supporting that person looks like. This will be done via an hour(ish) long interview with her via zoom or teams (or telephone if that is easier for the carer). It will take part at a time convenient for unpaid carers.
To take part the carer must be over the age of 18 and able to give informed consent. Unpaid Carers will be paid £30 for the interview – or thy can request a voucher to the same value.
If any carer other there is willing to make part – or would like more information before deciding please email Cassie on c.lovelock@lse.ac.uk or you can text/whatsapp her on 07429428992.
Welcome back to a brief update of my South West London mental health carers forum. It is not like my other forums since this one tends to be a hybrid of peer support and carer engagement. Plus its probably my largest carer forum which cover’s 5 boroughs or six boroughs if we engage with NHS South West London CCG, because the commissioners cover six boroughs that being the borough of Croydon.
Anyway, one of the main focus is on how South West London & St George engages with unpaid carers, especially about mental health services, but the forum can then become a networking forum for other carers even outside SW London as sometimes national speakers may appear.
The speakers for August were
Elizabeth Stirling the new CQC inspector for SWLSTG
Tristan Brice from London Association of Directors of Adult Social Services.
Elizabeth presents on what the CQC is about
Since the CQC spoke at length regarding roles and plans, I can’t blog too much about that, however Elizabeth was kindly referred to engage with our group since their interested in how the group is supported.
Elizabeth spoke on the following.
How she has Worked in health and social care for 23 years
Worked as a support worker for four years
How she has been a Social worker since 2005
Worked for Mental Welfare Commission for Scotland
Has lived experience on caring regarding mental health.
Elizabeth then moved onto what the CQC does as in that the Care Quality Commission monitor, inspect and regulate services to make sure they meet fundamental standards of quality and safety, and they publish what they find, including performance ratings to help people choose care.
The CQC also set out what good and outstanding care looks like, and they make sure services meet fundamental standards below which care must never fail. Obviously, the CQC use information and evidence throughout their work, including people’s views and experiences of care. The CQC work closely with the public, other organisations and local groups across everything they do, that includes patients and carers of course.
Next Elizabeth explained the core fundemental standards for the CQC and what they look for. These would be
Person-centred care Dignity and respect Consent Safety Safeguarding from abuse Food and drink Premises and equipment
To also mention although the above is important, the CQC do look for other things as well. With the list above, they apply to fundemental standards that apply to mental health trusts
There was a very long Q&A session regarding these standards that apply to the rating of SWLSTG, but the important distinction was that it was coming from a carer’s perspective.
Each of those standards mentioned must follow a criteria of questions usually 5 of them, which are
Safe: you as the patient protected from abuse and avoidable harm. Effective: your care, treatment and support achieves good outcomes, helps you to maintain quality of life and is based on the best available evidence. Caring: staff involve and treat you with compassion, kindness, dignity and respect. Responsive: services are organised so that they meet your needs. Well-led: the leadership, management and governance of the organisation make sure it’s providing high-quality care that’s based around your individual needs, that it encourages learning and innovation, and that it promotes an open and fair culture.
Of course there has been a massive impact regarding how the CQC works and I had asked Elizabeth to talk in depth on covid-19.
Elizabeth talked about how the CQC had to adapt on how they work. This was a mix of on-site and off-site methods. In March 2020, the CQC suspended their routine inspection programme in response to COVID-19 and developed their ability to monitor services using a mix of on-site and off-site methods. Other changes were on improving the CQC’s ability to monitor risk to help them be more targeted in their regulatory activity. With that, by bringing information together in one place for inspection teams, presented in a way that supports inspectors with their decision making and by testing elements of how they want to work in the future, including how they provide a more up-to-date view of risk for people who use services.
I myself have always stressed to carer’s that the CQC is not a one way system, unpaid carer’s must provide the CQC with information and also requests so carers are working in partnership with the CQC. Elizabeth expanded on this by stating Information from patients and carers is very important to the CQC. All the information the CQC receive will be added to the records they have for each care service. The CQC can use this information to help decide where to inspect next, and what to look at when they do. When the CQC receive information about a concern for someone’s safety, they will treat it as urgent.
The CQC also use what people tell them to understand the quality of care they get from services like care homes, care agencies, hospitals and GPs. It helps make care better for everybody.
Again there was a very long question and answer session from members of the forum, but for those reading this blog please see the below.
Welcome back to another blog by unpaid carer Matthew McKenzie. I am slowly breaking into the world of becoming an author and I am pleased to announce my 2nd book on the experience of caring is out.
The title of the book is called : Experiencing mental health caregiving – Unpaid Carers
Obviously due to my previous role caring for my mother, this 2nd book focuses on mental health carers. What I mean by that is getting views, statements and comments from those who look after someone suffering mental ill health. The book is not to be taken as an audit, but a philosophical look at experience of care, I wanted those to be philosophical on their experiences of being a carer and anything mental health related. There will be comments that stated facts or sometimes seem like a pitch, plus some comments might offend some people, but it is very important to just get the voice out there and understand why someone would comment in such a way.
I am known for my networking to carers and this was the nature of this book. I wanted the book to be a link and connection to other unpaid carers, this is so that there is some form of identity for carers and a way to relate to the experience of care. The book is very large with over 300 pages and 33 chapters. The book however was quite challenging to compile experiences, because quite a few comments brought me back to when I was a mental health carer and some things hit hard.
To research the content for my book, I had to approach many mental health trusts and carer centres to promote my project and I thank those that have contributed.
Many thanks to CNWL, West London Health trust, Nottinghamshire Healthcare NHS Foundation Trust for their lovely newsletter, Cambridgeshire and Peterborough NHS Foundation Trust and many other mental health trusts allowing me to present about my project.
I also approach universities especially those who taught psychiatry, psychology or those who led on social care courses. I wanted their opinions as well, because if you want nurses, social workers, doctors and psychiatrists to work well with carers, you have to start where they are being taught their profession. I did want to include contacts from large organisations, but it was too difficult, although I do hope they support and promote the book. If anything is going to bring changes to the experience of care, it needs to be the voices of carers being amplified.
Next year, I certainly want to expand on the chapters I wrote in this book especially regarding the views given by those who contributed, however before I undertake my next project. I want to try my hand at poetry.
A Caring Mind 