Welcome back to another blog post by carer activist Matthew McKenzie. This site focuses on those who provide unpaid care to someone close to them. Recently I have just come back from a 2 day conference held over at Conference Aston just by Aston University Campus. The event held on 17th May was Carers Trust’s “Making Carers Count” conference.
You might have seen a couple of blog posts about Carers Trust. Basically Carers Trust is a national charity that works to transform the lives of unpaid carers. Carers trust believe in partnership in order to give support and voices to unpaid carers. They have 124 Network Partners all doing their bit to transform change for unpaid carers.
Basically Carers Trust want unpaid carers to be heard, valued and supported.
So with the “Making Carers Count” conference. We were joined by some of the network partners to “Reflect, Connect & Learn”.
The day kicked off with a carer panel discussion. We were joined by 3 carers all giving their voice on the changes to their lives in providing unpaid care. Those on the panel were not your average carers. They also empowered other carers and were knowledgable about their caring role. A young carer on the panel mentioned she had other skills and should not be counted as just a carer.
She was also joined other carers talking about their journey and how their own carers centre helped them.
The attendees and network partners paired up to work on a session looking to understanding different carer projects. Plus we also celebrated collective achievements. In attendance were representatives from Tower Hamelets, Carers UK, Mid Yorkshire , blackpool carers, Wandsworth Carers, Credu carers, Crossroad carers, Carers First, Carers Heart of England, City and Hackney carers, Sussex Carers, Northants Carers, Newcastle carers centre, Bridgend Carers Centre, Harrow Carers and many more.
It was amazing to hear all the good work each carer centre had done. We have done so much over the Carers Trust programme, but there is much more to do. The networking was followed up by a Collective solutions event. Carers Trust then presented the importance of working together and we had a discussion on project challenges regarding the Making Carers Count Programme.
There were some great project updates
Carers Heart of England – Projects on the rise of engagement with their cultural carer groups and key events such as the Diwali Event.
Wandsworth Carers – Their LGBTO+ carers peer support group
Improving Lives Plymouth – Projects on the importance of peer to peer support growing, due to monthly drop ins and activities.
Newcastle Carers – Developing and understanding of the needs of carers from Asylum seeker and refugee communities in Newcastle
City & Hackney – Engaging with young people, especially using technology like their whatsApp group.
There were more project highlights from aother carer centres, but the blog would go on forever if I listed all of them. The conference moved on to discussing and identifying actions and recommendations for the Carers Trust Network due to their latest “Making Carers Count” Programme.
For Day 2 of the conference, I was delighted to be included on the panel discussion of developing and designing inclusive services for carers. I was joined on the panel with Andy Barber from “Caring Together” and Vicky Morgan who is the Head of Young Carers and Young Adult Carers at Carers Trust. Thanks to Trisha Thompson (Carers Trust head of grants) hosting the panel.
My thoughts regarding service inclusion is that it takes time for carers to get involved. To be honest inclusive services should be including carers at the start, especially hearing carer stories and picking up themes that carers struggle with.
With those themes e.g. problems with carer assessments, being heard as a carer, or access to a service. It might allow the carer to give input on how to improve the quality of services.
I mentioned earlier on in the blog that Northamptonshire carers attended and at my talk I mentioned that the service provided by Northants carers actually won the HSJ 2022 award for system led support for carers. The award for 2021 went to Sussex carers, but it does go to show that having such network partners makes a difference for carers.
We can all learn from each other.
I could not stay for the full conference, although there were excellent presentations from other attendees. Plus a pleasent suprise to meet Carers UK staff.
overall I enjoyed the event and was very grateful to be given a voice as a carer.
You can find more about Carers Trust from the link below.
Hello everyone, welcome to another blog post by carer activist and author Matthew McKenzie. To watch the video version of this blog, click the video below.
I raise awareness of those caring for someone with a mental illness. I also raise awareness regarding cancer carers. Those caring for someone with cancer can also suffer mental health due to stress, guilt, anxiety and depression. In fact everyone actually has levels of mental health. It is not just reserved for those suffering mental illness. We need to be aware and awareness events are just the thing to help with that awareness.
So from May 15 to may 21 it is Mental Health Awareness week 2023. Now this is an annual event to raise awareness of the importance of mental health.
The official theme for this year, as set by the Mental Health Foundation, is ‘anxiety’.
Mental Health Awareness Week will increase people’s awareness and understanding of anxiety by providing information on the things that can help prevent it from becoming a problem.
Anxiety disorders affect over 8 million people in the UK – that’s a little over 1 in 10 of us and there are lots of different types.
For carers as I have mentioned before, there are many things that can cause anxiety. The first is worrying about the health of the person you care for. We also need to remember that The cost of living crisis is affecting the mental health of millions.
You can Get involved this Mental Health Awareness Week by checking out Rethink mental illness, Mind, Sane, Mental Health Foundation social media and share on your Facebook, Twitter or Instagram profiles.
Hello fellow carers. New blog from Matthew McKenzie
I have a new research project for those from ethnic backgrounds to get involved in.
This research study is to understand the occupational experiences of unpaid BAME unpaid mental health carers. Occupation refers to the purposeful activities that ensure individuals have a sense of identity and live independently.
What is the purpose of the study?
Using the OPHI-II semi-structured interview will provide an exploration of the occupational choices, critical life events, daily routine, occupational roles and environment of the BAME mental health caregivers. This will provide insight into the respective communities’ occupational experiences.
For more details you can contact Halima Ali Email: 2051364@brunel.ac.uk or see poster below.
Welcome back to a quick update of my carer groups and forums. I have resorted to doing a brief update due my current projects raising carer awareness. As of this moment, I am writting fiction carer stories. You can check out my YouTube channel to view those stories. I have around 13 more stories focusing on caring for someone with mental illness, I will then work on stories focusing on caring for someone with cancer and follow that up with a book.
Until then, here are my updates below.
Lewisham Mental Health carer forum
For my Lewisham MH carers forum we had engagement from Mina Hadi who have lived experience of mental health. She is the service user representative for the Patient Carer Race Equality Framework over at East London NHS Foundation Trust.
Mina would have attended my ethnic carer forum, but there was a clash, so we agreed she can present at my Lewisham carer forum. I often say to members of my carer group to network. This is vitally important if carer members are involved in a community project. This is why I try to link up with other groups involved in increasing equity for ethnic minorities using mental health services.
Mina talked about the importance of PCREF and how East London NHS FT is working towards reaching out to marginalised groups. These being diverse ethnic groups, refugees, asylum seekers, the homeless and the LGBTQ community. All are vulnerable to mental illness due to discrimination, stigma and lack of support. Mina talked about what needs to be done and work in progress.
The next speaker was Dr Georgina Charlesworth from University College London.
She is the Associate Professor in Research Department of Clinical, Educational and Health Psychology.
Her main focus is on dementia where she has wrote a number of papers. Some are shown below
Living alone and risk of dementia: A systematic review and meta-analysis
Befriending carers of people with dementia: randomised controlled trial
Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial.
Examining the Lancet Commission risk factors for dementia using Mendelian randomisation
Dr Georgina was joined by another researcher linked to North East London NHS Foundation Trust. Dr Georgina spoke heavily on the importance of dementia carers. She was impressed that such a carer forum existed and felt that we as a group set an example. Dr Georgina spoke about the problems of stigma and she talked about one of her projects, which was the Carer Supporter Programme within Prof Martin Orrell’s NIHR-funded programme entitled “Support at Home: Interventions to Enhance Life in Dementia”.
The new Alzheimer’s Society service manager for South East London was also due to join us, but were unavailable and I am hoping they will be free next time.
Ethnic mental Health carer forum
This is a forum not bound to a specific area. There should be places for minority ethnic carers to attend, so I often advertise the group to other NHS mental health trusts. The main group members are usually from South London.
The first speaker for this carer group was Abigail Babatunde from Kings College London. She spoke on updates for the project advanced directives black people.
The Advance Statements Project is a research project on getting advance statements – also known as advance choice documents or advance directives – to work for Black African and Caribbean service users who have previously been detained under the Mental Health Act, their carers, and mental health staff.
The goal of the research is to:
Help reduce detention under the Mental Health Act for Black service users, Support, hear and understand Black service users and their carers/supporters,
Know and further understand the issues surrounding using advance choice documents and why staff members may not follow them,
Reduce coercive care in mental health care, and to better the relationships between Black service users, their carers/supporters and staff/professionals.
There is a follow up event at the Ortus (Maudsley NHS) below.
The next speaker was Denise Mantell from Bromley council. Bromley Council is currently developing its Carers Strategy and would like to hear from as many carers as possible. Since Oxleas mental health services covers Bromley, it was a chance carers could get to be involved. It would help if the carers strategy involve those caring for someone with mental illness.
Talking about Oxleas NHS Foundation trust, we were joined by Japleen Kaur and Marie-france mutti. They spoke about the new Funding scheme – Improving patient and carer experience grants.
If those within Oxleas have an idea that will improve patient or carer experience, they can bid for funding (up to £750) from our charitable funds. The project ideas need to be developed jointly between members of staff and people who use Oxleas services or care for people who use Oxleas services.
Stages
Application form completed and sent to our Involved Network
Applicant informed of bid outcome
Transfer of funding arranged
Activity takes place
Bidder shares photos/feedback on how funds have been used.
Scheme criteria
• The grant should be spent on enhancing the experience of people using our services and their families • It should be used for activities/items that are not funded by trust services. • It should benefit at least three service users. • All bids need to developed joined with people using our services and staff members.
The first application period for the Improve Fund is open now until 31 May 2023.
If you have a query about the fund, please email: oxl-tr.involved@nhs.net.
Joint Southwark and Lambeth Mental Health Carers forum
Here are the update’s for my other carer forum I run in the afternoon for the last friday of the month. I used to run these forums seperately, but due to covering a lot. I have decided to merge them.
We were delighted to be joined by another speaker from University College London. This was Dr Rebecca Lacey who talked about her study on Young Adult carers in the UK.
This was following off from Carers Trust “Young Carers Action Day”, but unfortunately it was too late for Dr Lacey to attend in March.
Staff from Lambeth Carers Hub attended to hear more on her research.
The next speaker was Sarah Allen who is the Head of Patient Experience at Guys & St Thomas NHS FT. The hospital trust is currently working on their Carers Strategy. I often to say to all carers that it is very important to engage with hospital service carers strategy.
It is not enough for a carers strategy to exist, but to be used to hold services to account as in “You Say We did” focus.
GSTT want to involve families and carers in all aspects of their services.
They aim to recognise, value, include and respect carers. Plus treat them as expert partners at the heart of decision making for the person they care for.
I also presented the new NHS England hospital discharge toolkit to the group, there was a bit of confusion as some felt the toolkit was for triangle of care.
In the end I pointed that this was for acute hospital services in London.
I am also pushing to engage with GSTT Cancer and Surgery Clinical Group to raise the profile of cancer carers. Once I have built a group of cancer carers, I am hoping for engagement for that hospital trust especially regarding the cancer group. I am also getting support from Kings NHS and eventually will expand to other hospital trusts.
South West London MH carers group
This group is a hybrid as there is a carer-led peer focus for the first part of the group. The next part is finding out about services and how they are supporting carers.
The group is strictly carer-led and co-facilitated by SW London carer Ava. She does the peer group section, while I will focus on speakers and engagement.
We had a great turnout as all 5 carer centre’s help promote the group, but we can out of time for the peer support section. The group seeks engagement from the local mental health trust South West London & St George, but this can be difficult, probably lack of staff maybe? Still we got engagement from Kingston Hospital who have a strong carer focus.
We where joined by Beth Mburu who is one of the Clinical Liaison Practitioners. Kingston Hospital is working on their carers focus and Beth talked about the following
Hosp. Discharge Planning Toolkit (aimed at staff)
Carers’ Needs Assessment Template (augmenting and embedding the Carers’ Agreement)
Carers’ Passport
Triangle of Care – hospital self-assessment tool and lessons learned/embedded
Resource for first time Carers / people who give their time to support a vulnerable person
National resources -already in existence from Carers’ UK – communicate and disseminate to the right people
Live/real-time digital tool aimed at Carers’ drawing together local provision and resources
Safe Transitions of Care – checklist for front-line staff
Hospital checklist / advice and Information
Kingston hospital NHS FT also had a carers event on the 4th of May to engage with carers and let them know about the work they are doing to support carers.
Again I am also focusing on engagement from the hospital’s cancer services to prepare for my cancer carer group. It is important to know who does what and how they focus on cancer carers.
Welcome to another carer blog post by carer activist Matthew McKenzie. I raise awareness of carers who try so hard to provide unpaid care to loved ones. However I am not the only one fighting for carer empowerment or making sure carers get counted.
We have several national organisations promoting the value of caring. One of those charities is Carers UK. A major charity giving the voice to carers all around the country. I have been doing quite a few things for Carers UK, one of them being the co-chair of their ethnic/BAME carers advisory group.
I have also attended and spoke at Carers UK conferences and have been given major support regarding my poems.
So today was a special treat in order to celebrate all what good works are promoted across the nation. We were invited to the Royal Garden Party, which was a special occasion due to the recent coronation of King Charles III.
At any party or event I tend to network or try to network, so it was great to meet other carers including CEO of Carers UK Helen Walker.
The weather held up the best it could so the day went perfectly well, but I did bring an Umbrella just incase. As we walked across the grounds we marvelled at the Royal gardens. I can imagine myself being lost in thought as there was so much to see.
After walking through the gardens, I could hear music growing louder and this was coming from the royal bands. We were spoilt for choice as there were two bands playing at each end of the grounds.
We then waited to greet the royals, but I was hungry left for some food and came back only to find the Royals had greeted one of our group. Serves me right for being too greedy.
Still the food was marvellous, but the problem was that I ate the food too fast in order to try network again.
The staff were pleasant and friendly and often stopped to chat to make sure everything was ok. I felt I was the king the way the staff treated me. One of them showed us some Ice Cream as she explained the different flavours.
It was not long before it started to rain with that famous British weather, but by that time I had talked to the other carers who contribute so much to carer movement.
All in all, I felt special and to be treated to such an important function shows the Royals have a focus for a caring community.
If you want to find more about Carers UK, check out the link below.
Welcome back fellow carers to my blog site raising awarness of unpaid caring by carer activist Matthew McKenzie. I have now released my 7th carer story off my YouTube channel. You can watch the story for free at the end of the blog page. The new carer story now uses advanced AI voices, although I am still experimenting with some new techniques.
This new story is called “A story of Hope”, a longer story than my previous carer stories. This story focuses on raising awareness of same sex partnerships and the impact of mental health. It is unfortunately common for LGBTQ+ to go through higher rates of mental illness. Stigma often hits those groups and to make matters difficult we need to account for mental health stigma.
The story examines a woman’s race to say her partner. Many things are against her and she is unsure of herself. She was never a strong woman, but that all changed when Susan entered her life. As we all know, life is not perfect and certainly not predictable.
Now Eve has to fight for her love, she now has to understand what it means to be a carer. If you love someone then you want to care for them. However is Eve’s love enough? She now finds herself in new territory and making the wrong decision can be costly.
The story raises many themes including the anxiety of being a carer, feeling lost in the system and trying to rebuild relationships. Eve tackles many difficult experiences and discussions. What she finds out about mental health services makes her journey challenging as a carer.
Still, providing unpaid care will give meaning as to why we fight so hard for those who need us.
Welcome back fellow carers. This blog is by Matthew McKenzie, carer activist, author and poet. I write and campaign to raise awareness of unpaid carers. A lot of my focus goes on those caring for someone with mental illness.
I also have a focus on cancer carers, but more on that in a moment.
I have just released my 6th audio story about the importance of carer peer support. The story is called “Just when I needed you”. You can actually watch the story for free at the end of this blog.
The audio story revolves around the struggle to show empathy and the challenge someone faces with their faith. When people care for each other then the community carers, but this is not always the care as the carers in this story have their own struggles.
It takes a couple to walk that journey of someone damaged by the community. They are there for that person when he feels the world has abandoned him. The couple find a bond with their close friend as Barbara who is providing unpaid care can sympathize because she also experienced mental illness.
The audio story provides a story of hope, but raises challenging questions for those caring for someone. Things are not always so clear cut and it can be very difficult to be involved in someone’s care. This is especially problematic if someone is suffering depression.
Watch the video below and enjoy the carer awareness.
My next audio story will soon be released titled “A story of Hope”
Carer Fatigue and Burnout: What It Is and What To Do – While caring for a loved one can be very rewarding, given the physical and mental demands it often requires, experiencing fatigue and burnout from the role are very real possibilities.
Cambridge University Hospitals – Support for Carers – If you are a staff member with caring responsibilities, or if you manage a staff member who is also a carer, this page will provide you with information and support.
Carers Active April – Carers UK – Carers UK Active April campaign month supporting unpaid carers to be physically active, and raising awareness of the the benefits of physical activity for carers and the barriers they may face.
Give feedback on care – CQC – CQC use what people tell the to understand the quality of care they get from services like care homes, care agencies, hospitals and GPs. It helps make care better for everybody.
Young Carers Alliance – The Young Carers Alliance is a growing network of over 150 organisations and 350 individuals committed to changing this and improving the support available for young carers, young adult carers and their families.
Welcome to another carer blog by carer activist, champion and author Matthew McKenzie. If I am not speaking at events or conferences, I am busy writing or minding my own carer stall at NHS Hospitals. I certainly get into a lot of interesting conversations at the stall. Just to note, the reason for my stall is to focus on unpaid carers to get help and support. Not many people know they are even carers, they just end up coping. This is not always a bad thing, we do not have to use the label carer for everyone. Still, if you continue to just cope for a long length of time, they can have a bad effect on the person’s health and wellbeling.
So what’s with this blog? Well I got into an conversation when someone mentioned people only care because they can get benefits or compensation. I want to put out that there is more to caring than just getting ahead. It might mean different for others, but for myself when I provided a form of unpaid care, I did this out of duty and love.
I suspect many others provided care for someone close out of duty and love. When I was providing care for my mother, I knew how she was when she became ill. It was a tragedy to see how she became mentally unwell over the years. I fought very hard to give her the same quality of life I felt she could have. This might be different for those caring through other forms of illness of disease. Those caring for someone with cancer (depending on the stage of the disease) might struggle to improve their loved ones quality of life, but they will still care and probably care till the very end.
Those providing care will certainly want some kind of benefit that helps aid their caring role, but most will provide care even if benefits were almost non-existant. If carers are to value something, it would be knowledge of the condition the person is going through. If you knew what you are caring for and how to provide such care, then this would save so much trouble in future.
For mental health carers, it is important to keep that relationship going with the person they are caring for. It is important to develop good communication skills and develop trust because when those things break down, it will be harder to maintain a relationship.
Providing unpaid care can actually strengthen’s relationships, because if the ‘carerd for’ recognises the person is providing help and support, they are usually grateful for this. I remember the look my mother gave me as she lay on the hospital bed. She knew through all the years I had tried to be there for her. I admit I made plenty of mistakes, but she knew in the end, the relationship was strengthened. This unfortunately is not always the case for some unpaid carers. Many relationships have ended due to the impact of mental illness or being unable to cope, which can often push the carer away.
Lower down the list of why people care for someone is usually down to developing our own character and skill set. As a carer, the person does not want to give up their caring role. They want to prove to themselves that they will see things through. They want to develop courage and face those challenges head on as they advocate for the person they are caring for. To be honest carers will have to be brave and even advocate for themselves. This is not an easy thing to do as the services can often be patient centric.
Some character traits of carers already exist on the reasons they care. Some people already considerate, patient and understanding plus generous. When providing unpaid care, those character traits just go stronger each day. It is important carers must understand the stigmas they face. People will judge unpaid carers as if they have no skillset, but this is wrong and it is discriminatory. Carers need to also be vulnerable and ask for help. Especially if suffering from fatigue, isolation, anxiety or just needing someone to talk to.
It is important carers take time out for themselves, but with the pressures on health & social care, it can be understandable why carers put themselves on the line.
Welcome fellow carers. My name is Matthew Mckenzie and I campaign regarding unpaid carers. Most of my time I focus on those caring for someone with mental illness. However this blog is a little different, well ok a lot more different. Before I continue, feel free to watch the video version of my awareness blog
I am still focusing on unpaid carers, but more on those who care for someone with cancer. Why is that you ask? Well I run a carer’s stall at some hospitals. Those visiting someone using those hospitals drop by that stall and I often get those who care for someone with cancer. Yes, a lot do visit requesting information or just wanting to be heard.
Did you know that April is Bowel Cancer Awareness Month?
Unfortunately Someone dies of bowel cancer every 30 minutes in the UK. So raising awareness of Bowel cancer is incredibly important.
Bowel cancer awareness month is an opportunity to highlight the symptoms of bowel cancer and encourage people to get tested.
In fact this type of cancer is one of the most common cancers in the UK. It is the UK’s second biggest killer from cancers and most likely to be diagnosed in people over 60.
Some of the common symptoms of bowel cancer include:
Bleeding from the bottom and blood in poo
Being easily fatigued with no obvious reason or cause
Pain or a lump in the tummy
Persistent and unexplained change in bowel habit
Sudden and unexplained weight loss
With these symptoms it is so important to get screened or tested for bowl cancer. This is especially important for those from ethnic groups. There is no shame being tested or talking about it.
If you are caring for someone with cancer, it can be understandable that talking about this can be difficult. Carers of those with cancer are suddenly thrown into a world of advocating, feeling guilt and stressed at what the future holds. It is important health professionals identify and listen to these types of carers.
How can we reduce the onset of Bowl cancer?
Eat less red meat and avoid processed meat
Eat more wholegrains, pulses, vegetables and fruit
Be a healthy body weight
Be more physically active
Drink less alcohol
Stop smoking.
I hope this blog has raised much needed awareness. I certainly will be covering more on those who care for someone with cancer to continue raising awareness.
A Caring Mind 