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.
Welcome to the latest update of my Greenwich mental health carer forum. I run this with the support of Greenwich carers bi-monthly. The focus of the forum is to give unpaid carers a chance to query, understand and focus on the complex world of mental health provision, especially trying to influence mental health providers of the importance of unpaid carers. In a sense, carers can be service users as well, so services should take account families and friends supporting those with mental ill health.
Speakers for the October Greenwich forum were
Peter Ley – Oxleas Greenwich Service Manager Myles Thorpe – Voice & Engagement Officer for Greenwich Area Involvement Network Jason Mcculloch – Service Manager, Commissioning, Health & Adults Services for Royal Borough of Greenwich
Peter Ley Updates MH carer forum
Peter talked to our group regarding the work going on between Oxleas and Bromley, Lewisham and Greenwich mind in order to create a well being hub. Peter explained that basically, it’s a merging of those kind of services, to kind of provide something for people where there is an easy to access. So when you go to a GP service, or maybe you just want to drop some concerns, what they are developing is a hub of different types of interventions for people that can be accessed really quickly
The intention is to provide people with prompt access to things that will help on their mental wellbeing. The idea is that rather than go through a kind of long drawn out process of repeatedly being assessed for mental health, the idea is to get to something that’s helpful intevention and be quite quick about it, provide things to people in a matter of days, rather than months. This is opposed to when a situation gets worse, then more kind of time has to be taken to get service users back on their feet.
Peter then mentioned how the pandemic is still impacting the NHS. The impact certainly has been felt from a community mental health team point of view, so they coming back into a greater number of face to face visits at home, rather than using the phone or waiting for people to come to them. So people should notice where there’ll be more of contact that is actually face to face. There should be more home visits. Something new were put in place to help with that is something called “The Care Teams Approach”.
So across all the community teams in Oxleas e.g. psychosis teams, the intensive case management for Psychosis services, what they will be doing is getting two care coordinators together and supporting them two support workers. So the kind of caseloads will spread across four people rather than one. So caseload sizes that those four will be looking after will workout to, ideally 50 patients, but in some cases, is 65. The standard there is that each of those workers does at least 10 to 10 face to face visits each week, which should instantly increase the amount of face to face visits that people can expect to get across the month in the community.
QUESTIONS FROM CARER MEMBERS
I’m understanding correctly, your well being hub, I noticed that it’s still a trial at the moment. But the referrals, are you saying that the referral has to be done via the GP? From my personal point, they cannot manage the services that they’ve already got. I’ve got health problems at the moment, and I’m struggling for myself, if I had to reach out about the person I care for, then the chances are, for example, I call trying to get an appointment on an urgent need. When there’s no appointments, you get referred to the Greenwich hub, they call it a Greenwich hub. And all what they do is triage you over the phone, and then refer you back to the GP anyway
You said it’s two CCOs and two support workers. Are they permanent staff, or are they locums? Because Oxleas seems to me to be running on locums. At the moment.
Peter we have not seen you for a while, we do hope you can engage with mental health carer groups, so there is an understanding of how Oxleas supports and engages with carers.
I myself asked the following questions
Who leads regarding care coordinators and social workers? If a Medical director leads regardings psychiatrists, then does Oxleas have a director of Social care? Although I understand care coordinators can be a generic role, plus what sort of training do staff at Oxleas get regarding carer identification and engagement?
Bonus update from Debora Mo – Mental Health Commissioning Support and Engagement Officer at SE ICB
Debora updated that they are conducting workshops with clients in a range of supported accommodations in Greenwich. So mainly from bridge support, one housing and Sanctuary. They already had their first workshop but they would like a couple of mental health carers to join if they were able to. There was a contribution for lived experience people, which is London living wage level. The sessions are held at the “London Marathon playing fields” (https://www.accessable.co.uk/venues/london-marathon-playing-fields) and the next one is on the fourth of November. They can only accommodate about one to two carers because the facilitators they are working with are really keen that the group of people who actually have the lived experience.
Myles Thorpe on the focus of Greenwich Area Involvement Network
Myles introduced himself regarding his work with GAIN. Myles mentioned it’s a was Community Action Group that worked closely with Oxleas and various public mental health bodies to improve representation of seldom heard groups, this means lived experience of mental health users to engage with the service providers. So this is incorporated in the decision making and service provision. The goal is to improve access to mental health services.
GAIN recently registered as a charity, and Myles is their first member of staff. He is doing research essentially, in connecting with various communities. There’s a whole number of groups, networks and subgroups where all of the information that they gather, whether that’s on service users or members of the community, gets fed into a kind of working group. They try and bring the provision of mental health forward so that it’s fit and efficient based on the resources that they have in the community.
QUESTIONS FROM CARER MEMBERS
It’s good to hear that carers are going to be involved and I hope fully involved, not not just as an afterthought, which we feel we are at the moment.
Wasn’t there a recent event regarding GAIN? I was wondering that turned out?
So Myles and myself sit in different things together, apart from the fact we do communicate a lot, but we also sit in different meetings that involve others like Oxleas and BLG Mind. So we are trying to focus on a united front, in a sense of all the work that’s happening, and also share all this information and knowledge.
Jason Mcculloch updates on Royal Borough of Greenwich Carers Strategy
Jason talked about what his remit covers, which is a number of service areas, but unpaid carers is one of them. He has been coordinating the delivery of a new carer strategy for the borough of Greenwich, this is a joint carer’s strategy with health colleagues, which was launched formally a couple of weeks ago, down at town hall. The launch was followed up with an event at Greenwich carer center. They are now planning further events in the evening, where the date is to be confirmed.
Jason was at the meeting to let everybody know that they have launched this new carer strategy that they are now moving into the sort of implementation phase of that strategy.
One of the key aspects of the strategy for Jason is that carers should receive a consistent level of service regardless of where they connect with health and social care services across the borough. So whether it’s at the GP, whether it’s with a social care team, either at the carer forum or with Oxleas, whether whether it’s a hospital, and you should expect the same basic level of service, the same sort of consistent information and advice.
In the background to make sure that colleagues across the health and social care sector and are aware of the strategy. We need to make sure they are aware of the commitments within it and understand what services are available for carers, which you can access or can be referred to. So as of this moment they are starting that work now, talking to the various social work teams getting engaged with GPS, and so on.
QUESTIONS FROM CARER MEMBERS
I’ve done so much for my son in the last two years. And I sit my listen to all these promises, and all the research and projects that have been done. And I’ve heard it all before they come and they take information from us, and then we don’t see them again.
Were there any mental health carers on your working working group? I was on this for 4 or 6 years ago, I was part of the original carer and strategy working group that you were setting up, but it all fell apart and I never heard anything more about it. Will there be more focus on mental health carers this time?
A Caring Mind 