Welcome back to another blog by carer, poet and carer activist Matthew McKenzie. I am working on an audiobook of fiction carer stories. These stories focus on the experience of mental health carers.
When I am talking about mental health carers, I am referring to friends or mainly someone in the family caring for a relative.
The stories are from the audiobook “Providing Carer & Other Short Stories”, the audiobook will contain 20 short stories focusing on the struggles unpaid carers face, young carer challenges, discrimination ethnic carers may face and overall raising that awareness.
I have now released the 2nd short story called “Digging out of a hole“, which can be watched off my YouTube channel below. The story is how a young man struggles to face up to the role of being a mental health carer.
Welcome to another blog post by carer Matthew Mckenzie who raises awareness of mental health carers as an Author, activist and poet. I have been quite busy working on several books, although for this particular blog I am focusing on how my audiobook is developing. This audiobook is called “Providing Care & other short stories”.
You can actually watch my first carer story at the end of the blog.
The audiobook will contain 20 short stories focusing on the experience and challenges of those caring for someone suffering mental illness. Each story will raise common themes mental health carers face, e.g. the anxiety of suddenly falling into the caring role, dealing with carer or mental health stigma, clashes with confidentiality, discrimination and misunderstandings, Young carers, minority and ethnic carers and more. There will be plenty other themes I will be raising regarding unpaid carers.
The first story providing care focuses on a young woman who suddenly falls into providing care, even if she thinks she is not a carer. I do not go and outright tell readers and listeners what is going on, I want them to discover the themes themselves and let me know what they have found out.
A lot of audio stories will be changed into video stories, depends how much time I have on my plate. I am still busy writing the stories and working on a story about a woman in a same sex partnership, unfortunately LGBTQ partnerships can still be driven into mental illness. A lot of the stories I write are quite dark, but those stories do need to be told.
Let us focus on the story Providing Care.
The story tells of a young women named Shelia caught unaware when her husband Tom begins to act strangely. Shelia becomes concerned, confused and wondering what to do next. She is thrown into a situation she has not been trained for as her world turns upside down.
It is not long before Shelia tries to save what is left of her relationship by doing all that she can, but can this be enough?
The story “Providing Care” highlights the sudden realisation of falling into unpaid care, there is little preparation if any at all. You can actually watch the draft of this the story for free by clicking the link below…..Enjoy!!
Welcome back to another blog post by former mental health carer matthew mckenzie. I am also an author, poet, carer activist and faciliator of carer groups. This blog is going to be a bit of an update on how my new audiobook development is getting along.
The audiobook is called “Providing care & other short stories”. This new audiobook is about the experience of care provided by families to someone suffering mental illness. The audiobook will be my first attempt at fiction, although to be fair I have done some fiction before mainly through blog posts.
The short story titles are as follows (titles subject to change)
Providing Care
Digging out of a hole
A family Affair
Never thought it would be me
Angry
Just when I needed you
A story of Hope
Discriminated
View from the other side
Communication
Banding together
Solitude
Its my right
Wellbeing
Empowerment
Former Carer
Trying to make sense of it all
Young carer
If Only
Until the end
Since the short stories are about providing unpaid care, expect some dark subject content in these stories. The stories might be fiction, but I did want to add some realism. Within each of the stories, there are challenging things that happen to the carers or I could say families and friends. These would be not knowning what to do when someone becomes unwell, encounters with professionals who are not carer aware, struggling with their own mental health and being neglected by health and social care.
It is unfortunate that although many carers do get some level of support, the are those out there going through the same challenges as the carers in my stories
The good news is out of 20 stories, I have finished 4 of the stories. I should pat myself on the back, because I started the project over christmas.
The first story is the main story about providing care, but seen through the carer’s eyes.
The second story is dark with some glimmers of hope when a person is trying to pick up the pieces, but not finding any answers. As the picture shows, there is a mistake as I labelled it
The third story as shown in the picture below shows how not all things are equal in caring
The fourth story regards experiences in the hospital
I am just about to start my fifth story, which is probably quite depressing, but it does open up the struggles of carers and misunderstandings concerning mental illness.
Coming out of hospital checklist – This will be useful for my carer stalls at hospitals. This helpful checklist on what should happen before the person is discharged into someone’s care.
Hello fellow unpaid carers. Here are some more poems from my book “The Poetry book of mental health caring”.
Every so often I tend to make videos of my poetry off my YouTube Channel.
The Long Wait – Poem by Matthew McKenzie
The Poem below describes my experiences in a hospital when trying to help my mother who was suffering mental and physical health problems at the time.
The unwanted role – by Matthew McKenzie
This poem below focuses on someone becoming an unpaid carer for the first time. The poem explains from their view that they are slightly aware of the difficulties they will face, but will have to face these challenges alone.
How do I say this? – by Matthew McKenzie
The Poem below explores the struggles a carer has in understanding mental illness. He is aware of the stigma when he is trying to communicate with his daughter, but he is dealt a blow regarding his own caring duties and also to fight to sustain a relationship with his daughter.
The Triangle – by Matthew McKenzie
The poem below explains a mental health policy aimed at NHS organisations to make sure carers are included in services. The Triangle of Care has a long history and is highly sought after by mental health NHS trusts to strengthen carer strategies.
To explore more carer/mental health poems from Matthew McKenzie, you can check out the book below on Amazon.
Hello Fellow carers. A quick blog from me on the latest South London & Maudsley (SL&M) NHS Foundation trust’s recent families and carers listening event. Usually mental health NHS organisations run special events to bring together those who care and support someone with mental illness, especially those using the trust services. I have been to a few NHS organisation carer events, but was delighted to see SLaM were to host one close to carer’s rights day.
It has been around 3 years since the Maudsley hosted a listening event for unpaid mental health carers. I remember the last carer event held over at Southwark community coin street where we had some excellent speakers and the staff were very welcoming.
All of the past family and carer listening event focused on carers getting a chance to be updated and also to be heard. The 2022 event I felt was very different and gave a chance for carers to update each other, especially those who were very involved shaping maudsley trust services.
The family and carer listening event 2022 was held over at the Ortus, which is SL&M’s own venue for hosting small or large conferences, meetings, training courses. I have not been over to the Ortus for some years due to the Covid-19 pandemic, which also explains why SLaM has not hosted the carer conference for some time.
The carer event was chaired by Gabrielle Richards MBE who is the trust Head of Inclusion, Recovery, Professional Head of Occupational Therapy and AHPs. So yes, Gabrielle does an awful lot. Her role is also inclusion of carers and patients at the trust. Going back to the event, I arrived on a wet rainy thursday morning, since the event started around 9:30 am. It was not easy getting to the Ortus due to the maze of construction developing of the exciting new build, but maudsley staff were very friendly and helpful in directing me to the site.
The Ortus was very warm and comforting, I was handed SLaM’s latest launch of their Planning for the future bookley, carer’s strategy and emergency planning booklet.
I noticed with all the booklets there was a heavy carer influence especially from those who attend the NHS trust’s carers committee.
As I arrived, I was greated by staff and carers from each of the boroughs SL&M covers, which are Croydon, Lewisham, Southwark and Lambeth. We were served early refreshments as I caught up with those who I have not seen for a while. I noticed also carer governors doing their bit to engage and chat with other carers while also networking. Everyone was looking forward to the event.
The event was held in the large conference room downstairs with Gabrielle and Flora Ezenwoye, Chair of the Family and Carers committee welcoming the audience to the event. We then got a presentation from Alice Casey who is the Director of Programmes of the Maudsley Charity.
You can watch Brenda’s video below
Next was a listening exercise as the hosts asked carers what they would like to hear more about at the carer conference. Next we got to hear a carer’s story from Faith Smith who spoke about her involvement at the mental health foundation trust. A lot of new carers have not heard of involvement in shaping/influence services, especially services aimed at carers, so I noticed they paid a lot of attention.
One of my forum group members was unable to attend, but we got to see a video of Brenda who spoke about the importance of planning for the future. Brenda feels carers including herself must be supported to plan for the future as there is also a worry how a carer will cope when they are unable to care in later life. This helped explain the launch of one of the booklets.
We then got to hear from chair of the NHS trust Sir Norman Lamb who spoke about the NHS trust direction for carers, he also was proud what the trust has done with Triangle of care (inclusion policies aimed at supporting carers), but he admitted there are still many things to work on and nothing was perfect. I felt it very important those who help lead the trust make their presence known at events and also get a chance to listen to carers themselves.
This was when I got to do my presentation, which Sir Norman stayed to watch. All of my own projects tend to focus on networking and sharing ideas. So I presented on the importance of carer networking, events bringing people together and also holding to account. I spent most of the time asking carers to share ideas of what they felt was a good example of carer networking.
I also finished off with a carer networking poem from my latest poetry book “The Poetry book of mental health caring”, which you can purchase off Amazon. The poem taken from the book was called “The carer network”
Next we got to hear updates and service information from Chris McCree who is the Parental Mental Health Lead of the Helping Families Team and Perinatal Community Services. We also heard from Nick Hunter who is the Peer Trainer of the Fathers group. After the talk, we then had launch and got a chance to catch up with other carers we have not seen for a while, an exciting development was carers from the Croydon area started a new connection group, which I am now hosting, Usually I connect in Lewisham, Southwark and Lambeth and every so often I will go over to Greenwich or connect with my SW london group or West London carer groups, but I have not paid much attention to Croydon much.
I have now agreed to form more of a connection carers from that borough, especially since my SW London group gets some engagement from the SW London Integrated Care System and they cover 6 boroughs including Croydon. There is also exciting news regarding those boroughs, but I am keeping my mouth shut for now. In the end, it does not mean I am running a Croydon group, but it does mean we connect more online and it helps that carer governors are present in the group.
I also caught up with friends and carers from Southwark as I spoke to Toni King and Lorraine James who are from the Southwark Council mental health team. I mentioned to them I run a carer’s stall at several accute hospitals and would be glad to promote their service to carers at Kings College Hospital. I also chatted to carers who attend the Lambeth MH carers peer group and spoke to carers regarding the Patient Carer Race Equality Framework. So you can get an idea of what I mean about carer networking.
After a lovely lunch, we got to do another listening exercise to give feedback. Plus we got to hear from Margaret Whipp who talked about her experience as a carer and the importance of connecting on social media.
I often mention to carers that it is so important to get online and make your presence known. Online campaigning, connecting and networking works wonders for those who are isolated and caring for someone vulnerable. Due to the technological innovations pushed from the pandemic, the time to get online has never been more important. There was more exciting presentations and exercises being chair Yoga, Implementation studies helping to reduce racial Disparities, Triangle of Care Updates and also more carer stories.
There were also excellent presentations from Annette Davis who is the chair of PCREF service user and carer group at SLaM, plus she is also involved in the triple leadership for Southwark and also the facilitator of Southwark BAME peer group. Annette presented on LAMB training, which focuses on looking after yourself and carer wellbeing, plus another carer Carole Haynes did a talk on her experiences.
Overall I felt the latest family and carer conference was the best carer event yet from SLaM. I have been attending them for years. I think this one was the 5th or 6th carer listening event from SLaM that I have attended, so I think I know the terrain a bit. The reason this recent event turned out well was the format. The event was very well planned, although some things made the event run a bit late, I noticed the host state we should not worry or panic over such things, which I felt injected a form of mental wellness into the audience. These are things I look for as mental health professionals should practice what they preach. The event was very inclusive so we did not hear endless updates, but the audience got a chance to talk and be listened to.
Luckily there was no shouting and screaming about poor services as I got the feeling there was a form of empowerment and learning, there was of course talks about carer activism, but that is part of the empowerment principal. I also enjoyed the free food and nothing upset my stomach. Staff were very supportive and glad to see me and special thanks to Cath Collins who thanked me for my presentation. It was a shame I could not stay as I had to prepare for the Health Service Journal awards for 2022 (more on that later).
Still there was a lot of talk in my whatsapp groups about the event, specially from my Lewisham group and also the new Croydon group, even now as I blog there are good things being said about the event. I hope SLaM continue the work they should be proud of with the carer conferences. I will finish off with a poem I got a chance to read out at the event.
All my time I have been on my own Then I heard it through another carer It seems if I can get that carer’s network Then understanding my role would be clearer
It is hard to know that your lost in the system The more you speak the less they listen I sick and tired of battling alone As a carer I dont want to stay hidden
Then I was introduced to the carers network They all said the same and wanted to connect I feel an inner light that shrines through And now I feel I am getting that respect
Still its hard to feel part of that movement Things change so fast it is hard to keep up If we are not kept ahead of all the changes Then it is easy to see the carers network breakup
We look around to see other representation For paid carers, professionals and service users But what about our own carers network Don’t unpaid carers also have futures?
Still for the time I have I am not on my own I tell another carer what I have found They also join the carers network Where understanding their role is so profound
Welcome to a very late update of one of my carer forums. These are updates of the groups I run whose members are those caring for someone with mental ill health. For my September SW London carers forum, we were joined by Professor Caroline Glendinning who is the Emerita Prof of Social Policy at the University of York.
Prof Caroline presents on Carers and personal budgets
Caroline thanks us for having the chance to engage with unpaid carers and a way to learn from them. She was interested in our personal experiences, especially from the experience of caring for someone with a mental illness. She was pleased to see there are carer led groups fighting to engage with services.
Professor Caroline spoke at length regarding how Personalisation and carer policies have developed separately. She mentioned what the choices are disabled people, being either direct Payments/Personal Budgets/Individual Budgets.
She then spoke a bit about Carer’s rights being the importance of having a carer’s Assessment, how Carers Allowance Support should work and also the need for carer respite.
Professor Caroline gave some examples regarding cash schemes, but also highlighted some problems. Comparisons were from the following.
Where schemes were designed to support carers (Germany / Austria) Plus some plans aim to increase choice for service users (England/Nlds)
Professor Caroline then moved into what trigger her research into these areas. These were “How do local authorities recognise/balance the rights, needs and wishes of service users and carers?”.
She wanted to find out what roles should carers play in assessment /planning support? Carers at the group were interested if there was there any consultation or involvement that was flagged up by her research.
Professor Caroline surveyed many Local authorities by running.
Lead officer interviews Focus groups with front-line practitioners Interviews with service users and carers
The results from her research lead to several findings, which Professor Caroline explained at length to the forum.
Joint/holistic family assessments desirable – carers usually involved
In practice assessments focused on service users – little attention to carers’ needs, apart from ‘willing and able’
Carers offered separate assessments but low take up
Even where separate carer assessment done, little consistent practice in bringing 2 together
Service user budget reduced by carer support
No guidance on carers’ role in planning service user support
Carers often involved in managing service user personal budget
Carers’ organisations not involved in developing personal budget policies/practice
Poor coordination of subsequent reviews of service users’ and carers’ needs
Discussion time from the group
Professor Caroline wanted to find out our experiences in regards to her research paper. There was a lengthy discussion on the following.
What were members experiences? Any feelings regarding Assessments How did people feel about Planning support When did Reviews take place?
Professor Caroline then spoke about the conclusions of her research
Carers not involved in developing personal budget policies/practice Failure to assess carer needs: Just asked ‘willing and able’ Too few separate carer assessments Service user budgets routinely reduced because of carer help Funds for carer breaks included in SU budgets
This was a brief update to my SW London mental health carers forum.
A Caring Mind 