Welcome back to another blog post by carer activist and author Matthew McKenzie. Only a few days until Young Carers Action day 2023, which will be on wednesday 15 of March. Young Carers Action day is an annual awareness and campaign event run by national carer’s charity Carers Trust.
If you are not sure what young carers do. They look after someone in the family unpaid and will have to cook, provide housework and even do shopping. It is not those tasks alone, young carers from the age of 5 can even provide physical care or emotional support. Young carers might even have to advocate for the person they care for or even help communicate for the ‘cared for’.
If you wish, you can check out my video on Young Carers Action day from my YouTube site below.
With all the tasks mentioned above and more, it makes sense that the theme for YCAD is “Make time for young carers”. It is important young people get the time for themselves since their role can be very demanding and caring for someone often comes with sacrifices. Later in life, people might have a choice in the care they provide, this cannot always be said for young carers who miss out on many opportunities. This could be in making friends with those at school, or missing out on education and skills training. When caring for someone, if you do not get a break then your own wellbeing is at risk.
So it is important young carers have access to breaks and are able to be identified early. When I was young, I did not know I was a young carer, so Young Carers Action Day helps raise awareness to young people who are caring. Once they know they are carers, then it is easier to ask for support and to ask to be identified.
Carers Trust want several things to happen for young carers.
improved support in schools
more access to breaks,
better access to counselling support
and more financial support.
If you want to help spread the message, check out Carers Trust resource pack from the link below
Hello carers, here is another update from most of my carer forums. Usually I try to update on each of the forums, but due to spending time writing books and raising carer awareness, it is not always possible to update each forum page.
Lewisham Mental Health Carer forum update
For my Lewisham group, South London & Maudsley want to engage with the London borough of Lewisham to explain new ideas for mental health services. There will possibly be a revamp of the Ladywell Unit that is based at Lewisham Hospital.
The speakers who looked to engage with carers were Sir Norman Lamb and Bobby Pretap, but unfortunately the meeting had to be cancelled.
The other speaker Angela Brient who is a PhD Researcher in Public Health spoke about the Impact of trauma. Angela spoke about her lived experience, which comes from caring for her husband who sustained a spinal injury whilst on deployment with the Australian Air Force in the Middle East. She was his primary carer for over a year, but ultimately, her husband took his own life.
The carer’s group were grateful for Angela’s insight and we learnt more of the Impact of Trauma course that Dr Julie Langan Martin mentioned to me a while back. Dr Julie is the Senior Lecturer in Psychiatry at the University of Glasgow. We are hoping to hear more updates on the Impact of Trauma course at a later date.
Joint Southwark & Lambeth Carer forum update
For my joint mental health carer forum over in Southwark and Lambeth. Carers were delighted to get engagement from Helen Hayes MP for Dulwich and West Norwood. Carers spoke about their past experiences of providing unpaid care, but the main topic was the progress of the new Mental Health Act. Members of the group are very keen to observe the debate in Parliment.
Other carers were interested to speak to Richard Okolo on how a mental health solicitor could help someone who has been sectioned. Richard could not make the forum, but we hope to hear from him in March.
Ethnic Mental Health Carers forum Update
This carers forum specifically focuses on the experience of ethnic and diverse carers. Our first speaker was a carer on involvement at South London & Maudsley. Currently Maudsley NHS is an anti-racist organisation and seeks to increase health equity. South London & Maudsley NHS is signed up to the Patient Carer Race Equality Framework (PCREF). PCREF exists to eliminate the unacceptable racial disparity in the Access, Experience and Outcomes of Black communities and significantly improve their trust and confidence in our mental health services.
Annette Davis who is the Chair of the PCREF Service Users and Carers Group then gave updates to members. Annette mentioned that PCREF is a UK wide NHS initiative and South London and Maudsley are one of the first Trusts in the country to address institutionalised racism in the NHS. We heard updates on new flyers to advertise to the community on how they can hear updates or get involved in being an activist.
The next speaker Dr Brenda Hayanga spoke about her new research “Ethnic inequalities in multiple long-term health conditions in the United Kingdom: a systematic review and narrative synthesis”. Yes, I know it is a long title, but I do not know many research papers that have short titles.
Still, the importance of this research cannot be underestimated as I had just published my 4th book regarding health inequalities.
Dr Brenda will be speaking at an exciting event in april. The event focuses on Ethnic inequalities in healthcare for people with multiple conditions.
At the event there will be the following speakers
Katherine Merrifield from the Health Foundation
Dr Habib Naqvi who is Chief Executive of the NHS Race and Health Observatory
Dr Jayati Das Munshi who is a Clinical Reader in Social and Psychiatric Epidemiology at KCL.
Eve Riley who is based at Macmillan Cancer Support
Jabeer Butt OBE whose work looks into tackling discrimination and disadvantage.
Dr Brenda Hayanga who is a Research Fellow at the Department of Global Health and Social Medicine, King’s College London
The final update at the ethnic MH carers group was from Carers UK Melanie Crew. Melanie is the Senior Policy and Research Officer at Carers UK. Melanie talked about the new initiative on Good practice guide on supporting ethnic minority carers. The briefing follows Carers UK’s landmark report examining Black, Asian and minority ethnic carers’ experiences of the pandemic.
Obviously my 3rd biggest group, which covers 5 london boroughs. The group is co-facilitated by Ava who is involved at Kingston Carers Network and SWLSTG. The group is getting lots of support from the 5 carer centres.
We had a visit from Kirsty McLachlan who is based at Richmond Borough Mind. Kirsty is the Carers and Parents in Mind Manager and is very keen to promote the forum in our Carers in Mind monthly newsletter. It is great to see support and promotion about unpaid carers.
Our 2nd speaker was Chloe Smith who is the Healthy Communities Builder from Kingston Voluntary Action. She was joined by BBC MultiAward winning Poet, Michael Groce. They are working on a set of poetry workshops aimed Black, African and Caribbean Communities over in Kingston. There will be guest poets that will come and inspire people’s work throughout the weeks ahead by sharing their own stories and work. I was the guest poet for week 2 (more on that later).
You can watch a promotional video below
The third speaker was Wendy Doyle who is the Head of Patient Experience St Georges university hospital. This is one of the hospitals were I run a carer’s stall. Wendy updated our group on the carer’s focus the hospital is planning. Wendy also updated us on a healthwatch report.
Welcome to another carer blog post from Matthew McKenzie
Ever thought why carer centres run carer forums? If you are a carer then you know that you are putting others first. The more unwell that person is, the more care and support you give. There will be times of course that you become isolated, tired and wondering if you are ignored.
Well the things I have mentioned are some of the reasons why carer centres run carer forums. Those very centres usually also run carer peer groups. It gives carers a chance to be listened to and also be heard. Carer peer groups and support groups do not really give carers a chance to be empowered, but they do provide support.
If you are lucky enough to belong to a carer centre that runs a carer forum, then you have a chance to become empowered. You might be wondering what Matthew is on about. Well give me a moment and I will get to the reasons why it is so important to attend and support your local carer forum.
Ever heard the saying “Nothing about us without us?”. The very quote came from disability rights activist James Charlton. If you are caring for someone, then services provided for them will be decided if you are involved or not. This goes double if you are using carer support services.
It is all fine that carers scramble to use support services to reduce isolation, be given guidence and join in carer activities. There does come a time when carers get a little bit tired of being told what suits them. So carer forums give carers a chance to request what services would be useful. It is so important that unpaid carers be empowered to use their voice, not only to update and tell their carer’s story, but also to give input regarding the services they use.
If you are providing unpaid care then these services could be carer assessments, carer hubs, access to skill development, learning about upcoming events and a whole lot more.
A healthy service is one that includes the user’s voice and this is the same when it comes to unpaid carers who use carer centre services. If you are providing unpaid care, you do not have to be an expert to attend and support your local carer forum. It can be fine to just attend and listen to updates. It takes a long time to become an empowered carer and many carer services can be complex, especially if your carer centre is involved at your local authority carer strategy.
Without a carer forum running from a carer’s centre then the risk is carer services will take guess work in what carers want. So it is so crucial that carer members new or veteran attend their carer forums.
Welcome readers and those who care for someone. As you might already know, not only am I an author raising awareness of carers, but I am also a poet. I find poetry an excellent way to raise awareness of social causes. A good poem can reach the hearts and minds of those trying to understand caring.
I am sure many out there are aware that carers can often remain hidden. The world of unpaid care is often carried out behind closed doors. This might not be a problem, but when the role of caring becomes stressful then we need raise awareness of the plight of unpaid carers.
I feel even when someone becomes uninvolved in caring for someone close to them, they are still in the background somewhere inquiring about the person health and wellbeing. I feel a lot of carers can be a link in that chain.
So in my 3rd book on using poetry to raise awareness of those caring for someone with mental illness, I wrote a poem called “The Hidden Link”.
Feel free to listen to the poem below. I would love to get people’s views on what they think about the poem.
You can also get my poetry book from the Amazon link below.
Hello fellow unpaid carers. I am doing a quick update of most of my carer forums that I facilitate in London. These groups focus on mental health carers. Basically people who are caring for someone going through mental illness.
LEWISHAM MENTAL HEALTH CARER FORUM UPDATE
Members of the Lewisham group were interested in how the Ladywell Unit was performing for unpaid carers. The Ladywell mental health unit has several wards. The unit is based at Lewisham & Greenwich NHS trust. We were joined by Inpatient carer engagement Eunice Adeshokan who gave us an update. We were also joined by Cath Collins who leads on engaging carers in the community.
The next speaker was Caroline Norrie who is a research fellow at Kings College London. She spoke about research regarding addictions and the gambling industry.
She kindly passed on details on support services
Online gambling: GamStop is a free scheme that can be used to allow gamblers to self-exclude from online gambling websites and apps run by companies licensed in Great Britain. http://www.gamstop.co.uk
Blocking software: A GamBan software licence enables people to block access to online gambling apps and websites. The licence can be obtained for free if it is requested through the National Gambling Helpline. https://gamban.com
It is worth noting that people can no longer use credit cards to pay for gambling.
Betting shops, casinos, arcades and bingo halls:
All gambling premises such as arcades, bingo halls and casinos must be part of a multi-operator self-exclusion scheme (MOSES). This allows a gambler to make a single request (by filling in a form) to self-exclude from all premises offering the same type of gambling, such as betting shops. Once a self-exclusion agreement is made, the gambling company must close the gambler’s account, return money in it, and remove personal details from their databases.
For my Southwark & Lambeth mental health carers forum, we were joined by Toby Lee-Manning who is the Carers Development Lead for St Christopher’s Hospice.
St Christopher’s Hospice exists to promote and provide skilled and compassionate palliative care, but there also should be a focus on unpaid carers who are caring for someone end of life. The difficultly appears when people who are providing unpaid care are not sure what to do.
Luckily St Christopher’s Hospice have developed online courses aimed at carers, this is what Toby presented to our group.
We were also joined by Damian Larkin who is the Digital Health Nurse Lead at South London & Maudsley NHS. Damian spoke about BETH. Basically Beth is a free and secure way for our patients and carers to stay connected with their care team.
If you are interested in BETH – please check outSLaM BETH site
ETHNIC MENTAL HEALTH CARER FORUM
For my ethnic carer forum we were joined by Carers UK. Patrick Knock presented a project where Carers UK is currently working a series of ‘Carers Active Stories’ videos to highlight to unpaid carers the benefits of being physically active from the perspective of a carer giving their firsthand experience.
Here is a video link below
Next was Simon Mayers who is the Equality, Diversity and Inclusion Lead for Maudsley covering the borough of Lewisham. Simon updated the group on how Lewisham is working with the new equality policy. This policy is called “Patient Carer Race Equality Framework”. This framework is aimed at mental health NHS trust across England and it is important carers get a chance to get updates and raise any queries.
We also had Tafadzwa Marapara from Oxleas NHS trust. Oxleas is also adopting PCFREF and it was only fair to hear what they plan on engaging black carers and patients using their services.
Kevlin one of our carer members is heavily involved in PCREF over at the maudsley, so I gave him a chance to update the group. Plus we also had Halima Ali join us to speak about her research project on What are the Occupational experiences of BAME unpaid mental health carers for people with a mental health diagnosis?”
SW LONDON MENTAL HEALTH CARER FORUM
This carer forum is slightly different from my other carer forums. This one covers multiple boroughs as we are developing a strong carers network. This group covers Richmond, Merton, Kingston, Wandsworth and Sutton. We get support from all 5 carer centres.
This group also spends a fair bit of time for carers to update how things have been progressing. We were also joined by Nicole Smith who is a Darzi Fellow in Integrated Medicine. She spoke to the group about Virtual Wards and how they are important regarding the NHS. She is also doing some research.
You can give feedback on her survey at the link below
This forum is slightly different as it is linked the the Greenwich carer peer group I facilitate for the borough. Greenwich Carers centre help me run the group. This forum runs every 2 months.
The forum was filled with a lot of speakers so I was glad that Oxleas work hard to engage with carers.
We were joined by Catherine Seabourne who is Oxleas Head of Nursing. She talked about her role and answered queries from carers. We were hoping to hear developments from Jason McCulloch who Service Manager regarding Greenwich Carers Strategy, Jason was unable to attend.
We were also joined by Ariane Zegarra and Janice Williamson. Janice is the new Carers Network Lead for Oxleas. We were given updates regarding social care.
This was the January update for most of my carer groups.
Welcome back to my carer blog site. I have been resting for a week or so. Well to be honest, I caught a nasty cold. So was not able to do much, but now that I have nearly recovered, I am back to writing again. I am still working on my carer fictional stories. Each story will be part of an audiobook called “Providing Care & Other Short Stories”.
There will be a set of 20 short stories looking into the experiences of carers who fight to provide care for someone suffering mental illness. Each of the stories will have a specific theme. I have turned 3 of the stories into video format already and plan to turn more into videos.
Here is one of the videos below.
Some of the stories will be in an audio format.
I have nearly finished my 7th story called “A Story of Hope”. This story might seem dark in some of the things it raises, but as the title suggests there is still some hope.
The story begins with a young woman visiting a mental health hospital trying to find out why someone ended up in there. It is a shock and a mystery as she is thrown into a desperate situation.
The young woman tries her hardest to fight for the person she loves, but has the damage already been done? She has never faced such a situation before and she does not known who to trust. She is still struggling with the past, but is the past going to catch up with her?
Of course I do not want to spoil the story, but the story does raise important themes on what it is like to care for mental illness.
I hope to finish this story soon and work on the 8th short story called “Discriminated”.
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 my online site that focuses on unpaid carers. The site usually focuses on those caring for someone with a mental illness. This particular blog is on access to online learning resources.
The world is changing, since the 2019 pandemic, many more online learning resources e.g. access to help and advice, benefit info, event info and even carer groups have all most online. What if the carer struggles with the computer? what if the carer does not know how to join online groups?
It was a struggle to access online resources before the pandemic, but it still is a challenge. Some good news, Lewisham Carers Hub have received funding to allow carers to learn about computers and accessing online information. Please see the poster below
