Welcome to a quick update from Carer activist and Cygnet Carer network Ambassador Matthew McKenzie. As involved at cygnet, I seek to connect with families and carers whose loved ones use the services of Cygnet. It is important carers are involved to help shape services and connect with other carers to shared knowledge in a peer supportive environment.
On Thursday 24th of October was the Cygnet Staff Achievement Awards 2024. Cygnet take pride in their staff and look to celebrate and award all the work their staff do.
The massive award ceremony was held over at Edgbaston Cricket Ground Banqueting Suite, Birmingham.
As a carer it can be difficult to feel part of something special, so I was delighted be called as a judge to submit my views as a carer network Ambassador regarding what I thought was important. Cygnet wanted to thank all their staff for the hard work and dedication to their job. To many, it is more than a job, which is why Cygnet wanted to award those who have gone beyond their call of duty.
Obviously before the event, I took my time to explore Birmingham. It is such a wonderful city and people are welcoming and friendly. I almost did not want to leave, but I also looking forward to attending the award ceremony. The location for the award ceremony was an excellent choice. The venue was easy to get to and hospitality was brilliant, with excellent food and welcoming staff.
The Cygnet Staff Achievement Awards 2024 was presented by three inspirational people. The first being Carer and Actress Sally Phillips and her son Olly Bermejo.
Sally’s work as an actress is amazing starring in the following
Pride and Prejudice and Zombies Bridget Jones: The Edge of Reason (2004) Bridget Jones’s Diary (2001) TV Comedy Series Miranda (2009)
She is also a patron of the Skylarks charity in Richmond [south-west London], which helps those with disabilities who fared much worse under austerity during the pandemic.
Next we heard from Nicolas Hamilton
An inspirational man who has made an impact in his life to change things around. He now uses what he has learned to help others. Nicolas Hamilton is a British racing driver who last competed in the 2023 British Touring Car Championship. He races with a specially-modified car due to his cerebral palsy. Hamilton is the paternal half-brother of seven-time Formula One World Champion Lewis Hamilton.
We then also heard from Dr Tony Romero Chief Executive of Cygnet on the importance of the award ceremony.
We then heard from David Wilmott Cygnet’s director of nursing who helped launch the award ceremony.
Awards Ceremony
There were lots of awards up for grabs as we all waiting in anticipation on who was to win for their achievements. Below is the following category list.
Care: Joy in Work Award
Respect: Inclusion & Diversity Award
Empower: Mover & Shaker Award
Trust: Helping Hand Award
Integrity: Hand on Heart Award
Delivering Service Excellence: The Showstopper Award
Innovation for the future: Game Changer Award
Support Act of the Year Award
Essential People Award: Unsung Hero
Learner of the Year Award
Bright Future Award
Swan Award
All Star Award: Service User’s Choice Award Social Care
All Star Award: Service User’s Choice Award Health Care
Social Care Service of the Year
I would like to congratulate the winners of the awards listed, but to be fair those who were nominated were also winners in my eyes. It was all about taking part and celebrating staff as a whole.
Below I have done a small video to celebrate and help promote the event. Well done everyone and good luck for next year.
Welcome back to another blog update from Carer Activist Matthew McKenzie, who also runs the National Cancer Carer forum.
As usual I raise awareness of unpaid care, but because of the forum that I run, I was invited to attend Macmillan Cancer Support Community network conference. The event took place on the 22nd of October over at Oxo Tower
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer and those who support them. The charity also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care.
There are several Macmillan Cancer communities, I am part of the London Cancer community network. Basically The London Cancer Community is a network of people who work or live in London who are either are living with, recovering from or have recovered from cancer; their friends, family and carers, healthcare professionals, community organisations, cancer charities and initiatives.
The Cancer community conference looked to celebrate the projects from network partners, raise awareness, network and also feedback.
The overall agenda was as follows
Registration from Macmillian staff who were friendly and polite. I felt to welcome attending the event. Plus I managed to grab some healthy breakfast as I was late arriving to the conference. So it was great to be well fed. I then managed to networking and browse some stalls. I was also joined by fellow carer activist Nadia Taylor who chairs the carer charity “Carers Network”.
It was not long before we were ushered to our tables to hear about the importance of the event and the agenda for the day.
Then there were presentations from the following charities, health providers and campaigners.
Can you ‘C’ me – Croydon BME Forum The Beauty of Support and Barbers Against Prostate Cancer Samina Hussain – Sakoon Through Cancer Judith Neptial – From me to you: the art of survival Macmillan Quality of Life and Personalised Care Community Reach Programme UCLPartners and Macmillan – The Improving Cancer Journey’s Learning Programme
I spent a lot of time catching up with links to Cancer alliances as they support the group I am running, although my focus is with RM Partners who focus on South West and North West London. I also linked up with the Cancer Alliance the provides services to the North East of London.
Overall I was glad to attend this wonderful conference, it was a shame I could not stay long as I headed off to run my carer stall at Queen Elizabeth Hospital over in Greenwich. I often get visitors to the hospital seeking advice and information due to caring for someone with cancer.
My final thoughts on the event was on the amount of hard work to put the conference together. The conference felt like it was forming a community of those who did all they can to support the health of the community. I cannot wait till the next conference.
Please check out Macmillan Cancer Support community network newsletter below.
As a person of lived experience in caring for those close to me. I have always tried to advocate that a caring attitude leads to caring communities. We all want a place where we can thrive. We all want somewhere that we are connected and supported. This takes work, it takes energy and yes, it takes a lot of experience.
Its not just about caring for someone, we want a place that cares for us, but we must all chip in. We must all do our bit, but the goal is that we will all benefit.
Caring for one another is something that is a wonderful thing, it is not easy and I know many walk away from the role because the challenge is too much. This is understanding, we should have that choice.
However, the choice gets more expensive if we all decide to walk away from connecting with each other. Such a choice leads to isolation, misunderstandings, fragmentation and certainly poor mental health. We should try to care for our community. It is something that will benefit us in the long run. Its a wonderful thing to learn from each other, but we must chose wisely. We must look at the long term picture and not focus on short easy gains that never last.
Building a caring community is the way forward. For far too long we have become isolated and no one benefits. We need to connect and look for what brings us together. There is no quick solutions, it takes hard work, but together we will all rise.
Community is important, especially a community that cares.
Caring can be difficult, especially if the role comes on unexpected. You have to be there for someone, find out what the symptoms are and do your best to help improve quality of life. It could happen to any of us, but the challenge is not all of us want to care and there are times when it is ok back away from the role.
What is more challenging is developing a community that cares. How can a caring community relate to someone who tries to be there for others?
We are all connected and we all have needs in a society that has become increasingly complex. We do not know what is around the corner, all we can do is try to be there for each other. As with unpaid carers, we cannot fully depend upon health and social care, there will be times when we have to be resourceful to support one another.
This is the same for communities. We cannot always depend upon others to be there when times get tough, yet we are all connected.
Civilisation, democracy, freedom and law can often be fragile and can break just like the branches of a tree. The branch can sway this way and that, but the wind of change can blow like a hurricane to cause the branch to break.
So we may find before long that we have to pick up the pieces.
The thing I am trying to get at is caring is not enough. Caring for a loved one might set an example, but unfortunately I have learnt that more examples need to be set. We need a society that cares. We need a community that values being there for others. A caring community can bring so much for inclusiveness, caring, learning from others and standing up for what is right.
We are all connected as for one day we will either care or be cared for. There is value in being there for others, no matter what uncertainty the future brings. There is value of giving just a little bit more in volunteering and sharing our common ideals. A caring society seeks out what is common for all of us, not what makes us all different. We all have the same needs, the same dreams and we all want to belong.
Caring can be difficult, it can demand sacrifices, energy and time. In the end who can say it is worth the effort? All I know is caring will benefit everyone as we are all connected.
Thanks for dropping by my latest blog post. It has been a while since I wrote anything due to being unwell over the Christmas season, it cannot be helped because during these periods there is always something going around. I even had my vaccinations so at least I was not too unwell.
I thought to write a short blog not only to express my wishes for the new year, but to inform and influence other carers what to look out for. When I mention ‘carers’ I am talking about those doing a role unpaid, they might have to provide care out of love, duty or necessity.
Carers are often close family members or even a friend or neighbour, but make no doubt about it a carer has to cope with the resources that are offered to them. On a worst case scenario, a carer would either need to seek out those resources or campaign for them. This should not be the way, but because health and social care can be complex, it is important carers work with the system to get the best support they can.
So below here is my wish list for 2024, which is not a complete list, but something that springs off the top of my head.
Healing from a difficult year
It has been a difficult and tough year for many out there. The cost of living, resources thin on the ground due to the impact of COVID, more cuts to services and the NHS struggling. It is so important that we take time to reflect what we have gone through and how far our own strength has carried us and how we support our loved ones. During the festive period of 2023, it is important to heal. We might use faith, our connection to the community or our peers. If we do not heal then how can we care for others?
The strength to carry on
I am a realist and it might be sad to say, but 2024 is not going to be any easier, it might be much of the same as 2023, but I know did down inside unpaid carers will use the strength to continue to care. It is such a tragedy when a carer has to walk away from their role, but it is understandable. We cannot allow carers to be pushed out of a role, so it is important carers are identified. The outcome is better not only for the carer, but the person they are caring for.
For carers, it is also important to be positive about our situation, a constant negative focus can be draining despite the harsh challenges carers face in health and social care. It is important carers take the step to be heard. If you are caring for someone, tell your story, fill in surveys, make a stand and make alliances. You need to be heard or be ignored, this takes strength to carry on.
My links and projects with partners to strengthen
I developed and accumalated many links with fellow peer carers across the community. Some have been champions of carer activism, others focus on the health and wellbeing benefits. Some carers want to learn and share their stories, this is excellent. We all come together to make a difference with NHS and private healthcare organisations. For what I learn, I wish to share with others. I will seek to develop a path for others to follow where they can learn and in turn help carers who might slip through the net. We can all learn from each other, but we need to be partners.
Celebrating our differences to build a fairer service
The UK is a diverse country, we all have differences, but as long as we seek to share our unique values then we all have something in common. We all want good healthcare, we all want mental wellbeing, but not all people get a fair deal. There are tools, guidelines and policies that help to include carers from different backgrounds. Carers UK have worked so hard to develop their “Supporting Black, Asian and minority ethnic carers” guidelines.
We also have a focus on ethnic mental health from NHS England’s Patient Carer Race Equality Framework (PCREF), which is aimed at organisations providing mental health care.
All these projects were done in co-production and it is important organisations include those who are from different backgrounds. For too long research data has proved minorities are not getting a fair deal as services and systems were not designed to support them. It is a matter for being honest and working with our communities.
Carers Hospital discharge toolkit to bloom
Although not heavily involved in the new NHS England toolkit, I have a platform in many accute hospitals. It would be very foolish not to champion the hard work many have done to increase carer recognition and identification at hospital level. With those platforms, I can build a network of carers who wish to be involved and help grow the toolkit.
In the past it was a struggle to include the family when someone was taken into hospital. The focus was often on the patient, maybe there was not time to engage with the unpaid carer, maybe carer awareness training was lacking or even worse there was not tracking of data regarding carers. With this excellent toolkit for hospitals, the struggle is removed. There is a pathway, a toolkit and a plan to follow. As with all things new, the challenge will not be easy, but I feel us carers can work as partners with the NHS hospitals and feel included and supported in our role.
Triangle of care to influence organisations
The Carer’s Trust ‘Triangle of Care’ framework has been around many years. The Triangle of Care has a focus on mental health carers. Its aim is to strengthen communication between patient, professional and carer. A lot of the focus is of course on families and carers, but with the policies and practicies flowing from the framework we can only hope influence more organisations to take up the challenge and engage with carers using their services. The outcome is better for everyone.
Championing Carers UK focus on carers
Carers UK takes up the voice of carers for the nation. Its not only guidelines, support, toolkits, surveys and practices from the charity. As a realist, I know full well that many unpaid carers would suffer if Carers UK did not work so hard to make the carer voice heard. I have been championing Carers UK for many years and will use all the resources I have to continue their view for a more caring society. This also includes other organisations that fight hard to include the carers voice be it Carers Trust, Age UK, Sane or others.
Write another book
Did you know that I am an author? I have written many books about the caring role as this is an excellent way to raise the awareness. Most of my books focus on the experiences of caring for someone with mental ill health, however I plan to write books on the importance of cancer carer voices.
I am thinking of perhaps 2 to 3 books to champion the importance of caring for others. A community that cares will care for itself.
More poetry
I dabbled in poetry for 2023 and have released a poetry book, several poetry videos and delivered performances. Poetry is an excellent medium for sharing experiences. A lot of my poetry can be dark as the carer experience can be an isolating role.
No one is trained to be an unpaid carer especially when a loved one is stricken with a devastating illness be it mental illness or cancer. Poetry does not have to be perfect, just a couple of lines can make a statement to be included in all time.
Continue to Grow the carer network
I am known for many things, but one of the greatest loves is developing a network. It is not complicated, all it takes is time. I have been running carer groups for many years. The carer groups used to run at local carer centres or hospitals, most are online due to advances in technology.
Be the use of books, poetry, podcasts, carer newsletters and forums, I will continue to use resources to bring carers together. I do not mind if one or two carers show up, the idea is we share and update. A carer network is vital for learning from each other and also holding to account. For carers to go into isolation is a difficult thing to do because risk being unidentified and will struggle.
Help form a platform with carers
When I head out, it is either to work, attend a carers event or spend time at a hospital, each time I am always thinking of ways to develop platforms. We all have strengths, ideas and gifts and we all can contribute as carer activists.
I know for sure that technology will change and so will ideas, so it is important to continue to develop platforms and work with peer carers.
Hope carers can hold local ICS and ICBs to account
The new NHS England Integrated Care System and Integrated Care Boards are developing processes and policies fast. The centralised scope of care at NHS England is changing towards a more local level. It is folly for unpaid carers not to step up and be included. Do not always expect ICBs to chase everyone as resources and roles will be limited. Carers UK and Carers Trust can only help so far, so there needs to be more carers who are diplomatic enough to hold to account.
By design the health and social care system focuses on the patient, in a sense they have to because the patient is the person who is at the most need. Still, as a human right we cannot expect the community to automatically learn the complex focus on health and social care. The community HAS to be included, the family, friend and carer have to be involved. There needs to be carer activism to hold to account. Carers who feel they can ignore these changes are in for a difficult time. It is better to be heard and lessen the isolation rather the give up, complain and be completely ignored, which is always a risk.
Time for carers to make a stand and work in partnership.
A caring community
Caring is not automatic, it takes time, skill and patience. There are those that view the caring role as lazy and not worth the time. This is a complete misunderstanding.
We do not know the time or place where we will care, but we will experience the declining health of our loved ones, if not the declining health of ourselves. To state caring is not important to society or the community is a curse. No one wants to be cursed with a community that does not value care, no one wants to be isolated and lonely with ill health. We might view ourselves as sufficient when we have the youth, power, intelligence at our command, but as time marches on we can see that we HAVE to rely on others.
It is foolish not to invest the focus on a caring community and sadly enough this can be an easy thing to do. It is so easy to be distracted by roles and duties, there is never enough time. We must prepare fast for the changing demographics of an aging society. We cannot always rely on the NHS as it is taking too much strain. One of the best way is for the community to share the ideals of care and service.
Caring for someone is not weak. A community that cares for others is strength, but we need to understand what brings us together.
As of this blog post from Matthew McKenzie, it is Black History Month 2023. Previously I had written my thoughts about what Black History month means to me. Black history is what defines me and what makes me work so hard to promote wellbeing and promote community. I want people to connect and I value community. I have seen what happens when distrust, discrimination, stigma and blame hits community groups.
Still, sitting around writing about things is not enough. You have to get out there and support the community. You have help promote the values of what brings us together and share ideals. So for this blog, I was delighted to help support Black History Month over in West Sussex. Crawley Musuem held an Exhibition of Black history month with community group “DIVERSE Crawley”.
As a reminder, Black History month has been celebrated in the UK since 1987. The celebration presents an opportunity for everyone to reflect on the past and think about how to improve things for the future. The month-long spotlight allows discussions to go past those of racism and slavery and look more to black leaders, many of who’s legacies touch daily lives.
I was there supporting Carers Support West Sussex who do so much for unpaid carers. With approximately 30,000 registered carers supported by Carers West Sussex. Their charity runs Support Groups and a Carer Response Line. They also assist carers in accessing necessary equipment and funding for their well-being. Additionally, Carers Support West Sussex offers counselling, call back services, and well-being support, with teams stationed in major hospitals. As soon as I arrived Adeelah Khan who is the Carer Engagement Co-ordinator greeted me. I also met their mental health carer engagement to Sussex Partnership NHS Foundation.
The Black History month event opened with African drumming session while the host Marilyn Le Feuvre who is the DIVERSE Crawley Co-Founder and Chair, made sure attendees where welcomed and looked after.
African Druming Session to Start Black History Month Exhibition
It was not long before crowds formed and the Lord Lieutenant of West Sussex Lady Emma Barnard arrived. She was also joined by High Sheriff of West Sussex – Andy Bliss and Crawley Mayor – Cllr Jilly Hart. We were then taken up to the exhibition on the first floor where we heard speeches from each of the attendees.
Their speeches struck an accord with me, I am not sure what Crawly does, but their community seems very close and connected. They all spoke about what Black History means to them and the importance of such an exhibition and event.
After the speeches it was not long before Lady Emma Barnard cut the ribbon to Launch the exibition
We were then given a tour of each exhibit including the impact black people have made to the NHS. The importance of Windrush and the struggles black people faced on arrival. We also heard about the positive things about Black History on what bring people together and sharing culture.
I was honoured to see my poem as part of the exhibition at the musuem and I even actually read the poem for the audience.
This was again thanks to Carers Support West Sussex who spoke about what they do for the community and how they feel unpaid carers are part of the community.
We learnt of African fashion and got to hear various African songs from the young and old. I took the time to place the audio below.
Ugandan National Anthem
Next we heard another poem about the impact of Windrush, which was wonderfully read out by Irma Stuart-Tei who is co-founder and Deputy Chair of DIVERSE Crawley.
Then we were given more details about black history including the case of Kris Karba, Stephan Lawrence and the importance of Black Lives Matter. The talk was supported by Crawley campaign against racism who spoke how together we can all contribute to tackling racism and discrimination.
There were talks about why Black women are three to four times more likely to die from pregnancy-related. The importance of diverse barbie dolls. There was so much presented, that I could not possibly cover them all. There were futher presentations downstairs followed by African and Carribean food.
All in all, I felt this day was the highlight of several weeks as I have been occupied by so many things. I was impressed on how much work and effort placed into the event. Again, I am not sure how Crawley community does it. They work together tirelessly to promote what community is all about. Please check out my video compliation of the event.
Looking forward to more things from Carers Support West Sussex and some other carer centres around the country. I also left my book with the carers centre regarding “Race, Caring and Mental Health”. The book promotes ideals of NHS England – Patient Carer Race Equality Framework.
Welcome to my latest blog. I decided to post something different this time and I want those who read this blog to reflect. I want people to reflect on what makes a community?
Well to be honest many things actually make a community, sometimes it can be hard to pin down. After all community is a large concept, but for me I think people make a community. My thoughts on this does not stop there, I was wondering what makes a caring community? This kind of question makes things tricky, but these days a caring community is something we are still working towards.
I do not think a caring community can be pinned down to one thing e.g. People. I think many concepts can influence and motivate others to care about each other. If you go through my website, I often talk and promote the ideals of unpaid caring. I promote how important families care for members of that family. I promote how friends can stay connected and ask how someone is doing. I promote how neighbours check in on each other, even if to miss the latest episode of EastEnders.
The thing is to make others aware of such ideals, because I am sure when the time comes, we all would want a community that cares for us. Unfortunately it is not that simple. Those in the community all have different values, culture and different identities. How can we work towards the common value that is important to everyone in the community? There will be times when those in the community cannot understand each other or do not recognise the value of each other. This is why it is so important we continue to connect, learn and share with the community.
It is true that values, culture and identities are different within the community. However we can celebrate our uniqueness as a common goal and continue to share the common values we all cherish. As a community we must continue to recognise those values and build on them, everyone’s voice will be important although there will be some things we need to avoid. Not everyone wants a community, but I know deep down the majority cherish the importance of connecting, sharing, learning and building on culture. These are the great values for the community and these values can help a community that cares for its people.
The Black Thrive Lambeth Partnership is inviting Black individuals, organisations and allies that are striving for an equal society to join our CommUNITY Assembly on 18 September 2021 for honest discussions about how together we can achieve real change for Black communities in Lambeth.
Welcome to my latest blog. As a reminder my blog posts focus on mental health carers, what I mean about that is highlighting the caring experiences of those caring for someone with mental ill health or mental health needs. This latest blog post is about community, because when all is said and done for health and social care, it is how the outcomes impact the community.
Some would say to test good quality wellbeing and a caring community, you can literally pick an area in town and stand there to observe. If you see run down apartments, no one talking to each other, anti-social behaviour, lots of noise and people seeming unwell, then this is a prime example of a community in trouble. When we notice such things, it does not take long to think to ourselves who is responsible for all of this?
I am not saying that all communities are like this, but it is worthwhile to experience what I am mentioning. Of course don’t do this at night especially if the community is known for trouble. Perhaps you might be thinking to yourself, why is Matthew raising this in his blogsite? What has all this got to do with caring?
Well as you can see by my blog title “A community that cares is a good one”. The thing I am trying to point out is because we focus on caring being a personal and private experience. We make the mistake that caring only exists in small confined spaces. We also tend to think that caring can only be applied to those who are unwell and once that person has recovered, then caring can stop. This again does not take into context the importance of caring.
Caring in itself can be applied to so many things, not just the person in themselves, but to caring about the environment, caring about ourselves as in our own wellbeing, caring for the importance of education and caring for community. Make no mistake I am not saying to care about everything, since we do not care for racism, isolation, blaming others or being a general nuisance to others. It is what we care for that counts.
I am fully aware that caring for others, especially those close to us is not a forgone conclusion, since there are many challenges that needs to be worked upon, especially with the new Health and Care Bill 2021 (see my online carers newsletter for more detail). I urge those who are caring, carer reps and the general public to take interest in such bills because it will affect us all.
Going back to the idea of caring in itself, we must take note that a caring community cherishes the importance of not only strengthening caring for others but in caring overall, where a society brings caring about those close to us towards caring for the good of all of us. This is not a simple tasks and almost seems like a utopia because we all have different aims and agendas and I expect those to clash as people do not often see eye to eye, but not all communities are alike, if we find a bad community, then it cannot be the case ALL communities are bad as some are better off, we cannot also think that it is just down to money and resources, because there are people out there working very hard to bring out the best in their own communities.
What is wrong in wanting to live in a community that will reduce isolation, improve health and wellbeing, easier access to social care, less noise, pollution and anti-social behaviour? All these wants and desires being out the best in ourselves and makes us happier in the long run, but we need to understand this cannot be done without the emphasis on care or our mental wellbeing is at risk.
Welcome back to another blog post by unpaid carer Matthew Mckenzie. I am happy to have been able to write up some posts, despite being fairly busy. I want to put a thought in your head, I know in this society, we do not often have time to stop and reflect. Living in this fast paced life it is so important to stop and think ever now again.
The thought I want to put into your head is this. “Have you thought about where you live”? Is it in the city or suburbs? Maybe a village or town. Perhaps this is not even a deep thought when you step back and observe, but it does not end there. When you look around, what do you see? Are those around the area as busy as you are? Or perhaps do they seem to be more relaxed? Maybe they are letting the world go by.
Now think about your health and wellbeing, are you lucky to have good health? It is not as easy as everyone thinks, because we are so busy, it is hard to find the time to eat well, exercise or even get a good nights sleep. We all know what happens if we cannot look after our health and wellbeing, but if you are curious then I will explain later.
A Caring Mind 