Welcome back to the 5th in the series of carer activist interviews. I have a special treat for Carers Week 2024 as this time I have gone international and interviewed Bernard Coley who is a strong champion for caregiver activism internationally.
Bernard is a carer and also does a lot of work making the carer visible especially regarding the impact of Parkinsons.
He acknowledges there are many challenges facing those who try to connect with caregivers and these challenges are actually similar over in the UK.
You can watch the interview for free below as Benard talks about how important it is for carers NOT to stay silent about their role. There is also discussion on how members of the black community can make a difference when connecting with carers.
Hello everyone. I am Matthew McKenzie, Carer Activist, poet and author. Volunteer for Carers UK, Carers Trust and Macmillan Cancer support to raise awareness of unpaid carers using my lived experience of caring.
At the time of this blog post it is Carers Week 2024. Carers Week 2024 could not arrive at such a better time, especially with an election happening.
For Carers Week 2024, the theme is “Putting Carers on the Map”. I know many carers are facing so many challenges in their role. This could be down to difficultly providing unpaid care, getting engagement from health & Social care services or even being identified as carers.
Many carers up and down the country can be easily hidden, they carry on with their caring role unaware of the support that can be offered to them.
With an election due to take place, the chance to put carers on the map has never been greater. It is an excellent chance to use our voices, experience of care and connections to continue to raise awareness.
So I am counting on many to help raise that much needed awareness of Carers Week. If you are a carer, health professional or someone with lived experience, it might be worth looking out for events from 10th of June to the 16th of June.
I will continue to write and promote carer events nationwide and do all I can to help raise awareness of carers, I hope you can as well. You can sign a pledge on the Carers Week website or you can run an event yourself. There is nothing too small to place carers on the map.
Poem for Carers Week
For carers week to share It helps to be aware That if you really care Listen up for your own welfare
Its best you are not ignored Noted a carer to be on record For support is your reward So social care back onboard
For Carers week is here With events to promote and shareb Its worth attending, just be there To learn about unpaid care
So please dont be ignored It something you cant afford Support and help explored Faith in the system restored
Welcome back to my carer activist interview series. We have a short blog from Antonia who I have known for many years when she was campaigning for young carers.
Antonia is active on her own carer website – Sincere Blog
Antonia is a freelance entertainment writer for over a decade, she works in the charity sector and has been an advocate for unpaid carers for 12 years.
Antonia creates digestible blog posts and social media content about local and national news about unpaid carers. She has created a safe space for unpaid carers via email to talk about the ups and downs of caring, signposting or general life updates.
What are the challenges of your role?
Not being able to help her loved one in certain situations, for example; when they are in pain or trying to balance it all and still have time for herself.
What future projects are you working on aimed at carers?
She is hoping to get back into blogging again and hosting fundraising events for unpaid carers.
What advice would you want to offer carers?
They don’t have to do this alone, whether it’s from a family member, friend, carer support professional or through Antonia’s email which is sincereblog@hotmail.com – definitely reach out and receive any assistance that is appropriate for you and your loved one.
Southwark Carers has been preparing for Carers Week 2024. If you are caring for someone unpaid in the borough of Southwark, check out the latest activities at Southwark Carers.
Welcome back to the fourth carer activism interview video. These interviews discuss with experts of lived carer experience on the focus for unpaid carers. Most carer interviews are based on those caring for someone with mental illness, however in future that might change to include other caring experiences.
The fourth interview was with Karen Machin who is a researcher and carer peer supporter. She raises awareness of the importance of co-production, peer support and research.
Although I run many carer groups focused on those caring for someone with a mental illness. I also facilitate the London Cancer carer forum. The group is based online to allow caregivers a chance to network, share ideas and be informed.
The are several reasons for such a group. The first is a platform to be heard or at least to reduce isolation.
It is not easy when you find out that someone close to you have developed cancer. There is shock, disbelief and confusion. How could this happen? Why them? Why me? Why now?
You are not sure where to turn, but for sure you will certainly listen to the health professionals. You will also do your best to be there for then person diagnoised with cancer. Still in the back of your mind, you might feel powerless. You are almost dependant on how hard the person you care for will fight.
So in the end you must remain confident, but the waves of emotions can keep flooding back. It is as if your life is put on hold because you are unsure about the future. Yet, you will try your best to plan as it is perhaps the best way forward. You do your best to listen to the fears your loved one might express, you will try and be there for them.
Still, deep down you dare not express your fears, concerns or worries to the person you care for. So who do you express them to? Who could understand? Would the health professional have the time to listen to you? How about counselling? There is excellent counselling out there, but it is not forever and you need to belong somewhere quickly. Even if it is just for a moment.
For carers who feel vulnerable there should be a platform where they can feel connected and to express their experience. There should be a place to learn from others and feel less isolated. As carers there should be a chance to try to share our journey because caring for someone can be a maze of complications and difficult emotions.
Since Carers Week 2024 takes place from Monday 10th June until Sunday 16th June 2024, The London cancer carer forum will focus on what support carers should seek for 26th of June – 5 pm till 6 pm.
Welcome back to another update of carer engagement at Cygnet’s Carers, Families and Friends network event.
As one of the carer ambassadors for cygnet, I find these events an excellent way of engaging and networking with staff and carers whose loved ones use the services of Cygnet. There is always a great line up of speakers and I enjoy hearing questions and experiences of staff and carers.
We have done many carer network events so far and it was time to visit Cygnet Kewstoke based over at Weston-Super-Mare.
The journey was pleasant getting to the Premier Inn hotel where staff were friendly and the room was super relaxing were I felt prepared for the next day. Julian another carer ambassador along with myself went exploring the area for a while to see what the community is like.
Apart from the rain, I certainly enjoyed walking around to explore. It was not long until we headed back to the hotel to prepare for the big event tomorrow.
It was not long before we headed to Kewstoke which sits on a massive site. The area is far from the noise of city where you are surrounded by peace and nature. You can see how massive the site is by the picture I took from the car.
Once inside the hospital, we noticed the staff eagerly waiting to see how the event would progress. I was glad to see a good turnout including carers.
The event was opened by David Wilmott who is cygnet’s Director of Nursing. He has a passion to include families and carers as we heard from David why such events are so important. Cygnet was working hard on the triangle of care and want their hospitals and sites to make a difference for families and carers. Its about following the guidelines of the triangle of care and applying it to Cygnet services.
Next to speak was Laura Sheridan who is the group service improvement manager she has done amazing work bringing carer ambassadors together and she has an excellent focus on connecting to the community. Its not only about families and carers, its all about community in the end. We want better health and mental wellbeing for the community, but we have to listen and in order to listen we need to connect.
Laura spoke about more initiatives that Cygnet was working hard to archieve. We then heard from Josh who is the hospital manager for cygnet kewstoke.
As the first speaker I spoke about the importance of carer empowerment. Health services cannot always lay down rules and policies. Families and carers must be empowered to give views, ideas and opinions, but before that they must be empowered to do so. I have always thought the those who connect to others tend to cope better as carers. Carer empowerment is not an easy task, in fact carer networking is a lot easier to focus on, but if a carer chooses they can learn from each other, form groups and work along with health care services.
One form of carer empowerment is through creativity. I use poems to connect to carers and sometimes professionals. You dont have to read a whole book to understand the mental health carer’s experience. A good poem can lead to solidarity where there should be a common interest, a common experience and a a place where we belong and feel invited.
Speaking about my journey as carer ambassador I felt supported as staff and carer engaged and feedback to questions I raised at the event. I ended my talk with a poem aimed at carers, which is quite a dark be realistic poem on the need to care for someone with mental ill health. The poem is not meant to frighten carers, but does appeal to urgency regarding the task a carer will have to take up.
Still there is hope, that hope is down to how professionals engage with the carer. The hope is making sure the carer understands what services are provided, but also the carer needs to be empowered.
YOU BETTER LEARN
You better learn There is not much time You just don’t want to be left behind
You better learn Just do it fast Provide that care and better do it fast
You better learn When they fall sick The pain of failure will hit you like a brick
You better learn About the system It might not work, so develop all that wisdom
You better learn Just look around Prepare to complain and refuse to back down
You better learn Beware of the cost The person you care for life could be at loss
You better learn Just don’t sit there I am warning you and trying to be clear
You better learn Just learn from me Unpaid carers can so suffer easily
You better learn Take up the fight A little learning can help with foresight
You better learn Just better learn Just keeping on learning Learning and Learning
Dr Sharon Collins and Josh Jones presents
We then had a focus on Psychology and Occupational therapy. This was presented by Dr Sharon Collins who is Head of Psychology and also Josh Jones who is Head of Occupational therapy. Both presenters are regional leads.
The presentation outline was on what are these two fields and how can they assist the patient and family. Dr Sharon mentioned that psychologists are actively involved in studying and understanding mental processes, brain functions and behaviour. Psychology is not Psychiatry, which is a branch of medicine.
Dr Sharon spoke about the role psychologists play and what they offer which is listed below.
Aimed at Service users/patients Assessments Psychometrics Individual therapy Group Therapy
Aimed at Staff Reflective Practice Additional support Supervision
Dr Sharon also spoke about the types of therapies
CBT – Cognitive behaviour therapy DBT – dialectical behavioural therapy EMDR – Eye movement desensitisation and reprocessing Psychodynamic CFT – Compassion focussed therapy MBT – Mentalisation based therapy BFT – behavioural family therapy
There was lots for families and carers to learn about the mental health profession. We then had a talk from Josh Jones on occupational therapy. Josh explained and example of Occupational therapy in that it is not just about doing things, it is enabling the person to be themselves and find meanding and purpose in life.
We were presented with the toolkits of Occupational therapy on individual therapy techniques
Lesley Mellor the next carer amabassador presented
There are four carer ambassadors at Cygnet who are all very talented with their lived experience backgrounds. Lesley Mellor was next to present on her journey as a carer. Lesley is the founder and chair of the Dorset Parent Council. This is a charity aimed at parent carers of young people with special educational needs.
Lesley understand a common experience of carers, this is down to trying to understanding about the conditions of their loved ones. She understands carers can feel isolated with the cared for’s condition. With Carers Week 2024 fast approaching Lesley will be launching the Cygnet Carers Peer group and Cygnet staff carer network. We then had more updates from Laura on cygnet services for carers.
We then had a lunch break and a chance to network with carers and cygnet staff before we heard from Kate Mercer who provides advocacy for carers at cygnet. Kate Mercer ran an interactive discussion session on the importance of human rights and why it is so important to offer carers the choice of advocacy
The last to present was the third Cygnet carer amabassador Julian Dr Takats. Julian spoke about the importance of the carer network, his journey as a carer and an explanation of what Carer Ambassadors do in their role.
All in all I enjoyed being part of the event. I will never forget how I felt welcomed by the staff at Cygnet, there is much work to do and even more to understand. We need ideas, views and opinions from families and carers whose loved ones use Cygnet services. I want carers to feel empowered and more.
It is mental health awareness week 2024. The theme for this year is “Movement: moving for our mental health.”.
The charity Mental Health Foundation has been running Mental Health Awareness Week for 20 years and it continues to grow stronger in raising awareness.
Please watch my video on the importance of Mental Health Awareness week.
To help promote and celebrate mental health awareness week 2024
1. Sign-up for an active challenge event! 2. Wear a green ribbon to show everyone that you care about mental health. 3. Learn about mental health by attend events online or locally.
Mental Health is every ones business and we must recognise and support our own mental wellbeing
Welcome back to the third in the series of carer activist interviews by Matthew McKenzie. These videos help not only bring awareness to what unpaid carers can do when helping others, but can also allow carers to learn about carer empowerment.
For this interview I spoke to Jaycee La Bouch fellow supporter of Carers UK and founder of Zen Laughter yoga therapy. Jaycee is not only a carer, but also finds ways to support other carers through the power of mental wellbeing. Every time I meet Jaycee, she always has a smile on her face.
Unpaid carers can go through many challenges that it can be so easy for them to neglect their own mental health and wellbeing. Watch the video of the challenges Jaycee went through and how she found the power to help others.
A Caring Mind 