Author Archives: mmckenz11

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About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

What is a carer – the blurred definition

Hello fellow unpaid carers, new blog from Matthew McKenzie carer activist. I have not blogged in a while, because I am so busy writing my books about unpaid care. The thing is, while I am writing stories about the experience of providing care, I could not help think about the term ‘carer’. I could be more clearer and say what does the word ‘carer’ mean.

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If i Google the term ‘what is a carer‘ The following turns up.

Wikipedia states the following

“A caregiver or carer is a paid or unpaid member of a person’s social network who helps them with activities of daily living.”

NHS England focuses the word ‘carer’ as the following.

‘A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support’

Come to think of it, if I google the word carer then most if not all of the following links agree with NHS England’s definition of a carer. The following links (subject to change) are from

Bristol and South Gloucestershire carers centre on “What is a carer”
Caring together – Cambridgeshire on – “who is a carer”
Carers Trust on Caring as an Unpaid Carer
Even the citizens advice site has a section on Carers: help and support

So ok, why am I blogging about the definition of carers? Well as you can see things are not all that simple. Get ready because it gets political, but that is nothing new here.

The word ‘carer’ is shared depending on who uses it and why they are using the word. As far as I know, carer workers use the term carer. I run a carers stall at some hospitals and people often come up to me asking the following.

“Do you have the number of a carer to help with looking after someone?”. I then explain the stall is for unpaid carers.

Others ask

“Do you have a job for working as a carer?”
“How much does it pay to be a carer?”
“Can you be my carer?”

Well, the above highlights there are some concerns, because to be fair paid carers / careworkers do care for people, but they are paid to do so. We also have to notice the word ‘carer’ carries with it a vast amount of prestige. It becomes political if people hijack the word to push out those who are providing unpaid care. There is a tug of war between those who want to be defined as carer. Do not get me wrong, as many in the professional sector are vocal that the word should belong to unpaid carers. Still, another problem I am aware of is that those providing unpaid care do not often recognise themselves as a carer. Some even deem the word as an insult because they are caring for someone as a family member and want to be recognised as that first. This is fine and there should be little arguements of this, except what happens if the person continues to struggle providing unpaid care? They are not recognised by certain health and social care systems as needed support.

With the blurred term of ‘carer’, it means not only the carer suffers, but the person needing the care might also suffer because the strain on the family member becomes challenging. We also now have the word ‘carer’ being used for those who work in the NHS. It is true nurses and doctors ‘care’ for their patients, but even that causes problems because what happens when a health professional has to provide care for someone at home or close to them? How would they be identified? Would the strain of care push them out of the health profession?

It gets worse, even if you someone become aware you are a carer caring for someone in the family, what are your duties? Another google search of “carer duties” or “duties as a carer” brings up the duties of care workers. So someone provding unpaid or informal care will get stuck, because sometimes they have no idea what to do.

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This is all confusing, I do not have the answers and I am sure someone out there does. Come to think of it, The care act 2014 is under scrunity. The House of Lords adult social care committee released a report in December 2022. The report mentioned that the government’s white paper does not go far enough.

There is a risk more unpaid carers and those they provide care for will suffer. It was stated that more support from health and social care professionals is needed to identify unpaid carers. As too many carers lose out on support, even if referred a large number might not be able to access support. I did warn it would get political.

To be honest, my thoughts on solutions would be education, education and campaigning. The big hurdle is getting others to scream that they are carers and that they need support. The cost of living, strain on health services and pandemic have highlighted the need for unpaid carers to get support. If the NHS continues to struggle it can only mean one thing, the community has to pick up the slack. That means carers will have to do more and also understand the health and social care system.

You can read the House of Lords adult social care committee report below from section 123 – What does it feel like to be an unpaid carer today?

https://publications.parliament.uk/pa/ld5803/ldselect/ldadultsoc/99/9906.htm#_idTextAnchor062

December Carer News Updates 2022

Latest carer and mental health news for December by carer activist and author Matthew McKenzie

December 2022 Carer and Mental Health news <- read more news items here

For the December edition on caring and mental health we have

HSJ Awards 2022 Winners – System Led Support for Carers Award – Video speech of Northamptonshire Carers who won the System Led Support for Carers at HSJ Awards 2022

Caring Together Virtual Carers Conference 2022 – Part 4 of Caring Together’s conference which focuses on Young Carers

Peers call for Government action on adult social care amid claims that principles of Care Act 2014 “not realised in practice” – House of Lords select committee has challenged the Government to introduce urgent reforms in adult social care

Experience of care – NHS England – Experience of Care updates from NHS England.

“We just sit in the house and freeze” – fear and friendship at the warm bank – Liverpool Carer’s Centre  – Liverpool Carer’s Centre acting as a warm bank for unpaid carers

Unpaid carers: The mental health crisis – ONS reveals that a third of unpaid carers are experiencing depressive symptoms.

Coming out of hospital checklist – This will be useful for my carer stalls at hospitals. This helpful checklist on what should happen before the person is discharged into someone’s care.

Young Carers and Young Adult Carers Survey 2022  – This survey is for young carers, so please spread the word.

Services must adopt anti-racist and holistic models of care to reduce ethnic inequalities in mental healthcare – The experiences of people from ethnic minority groups with NHS mental healthcare are being seriously undermined by failures.

The Legal Implications of the Debate Over Whether ‘Extreme Racism’ Is a Mental Illness – Interesting and important news story looking into defining racism.

Holiday greetings from Health & Care Professions Council – Happy Holidays from the HCPC.

NHS in London expands mental health crisis services this winter – NHS in London is set to boost mental health support for people in crisis to ease demand and pressure on emergency services this winter

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New book titles for 2023 by Matthew McKenzie

Hello, everyone!! Merry Christmas thanks for joining me here today to explain a bit more about future projects that I’m going to be working on. Some of them actually, almost practically finished. So yep, my name. As you can see from the title here, my name is Matthew McKenzie, Carer campaigner, Mental health carer activist who facilitates several carer groups around half of London.

what I want to do is just explain a few things regarding some books that I’m working on. I’m going to start developing audiobooks, I will of course continue to work on paperbacks, one of them is in draft at the moment. I’ll talk about that in a bit.

If you want to see the video version of this blog, please watch below.

Special edition of my poetry Audio book – The Poetry book of mental health caring

So during summer 2022, I published my first poetry book. This was my first attempt at what I felt would be focusing on the experiences of providing mental health care. One of the reasons of doing poetry is that you don’t have to really read a whole book to just sort of reach out to those who perhaps understand, in a sense of what’s it like to provide care for someone with mental ill health. Plus to also reach out to those who’ve never experienced it.

So I’m doing an audiobook project on my poetry, but with the added benefit of contributions from other carers who are activists or are poets who want to produce poetry on the carers experiences. So I’m hoping to publish in early 2023, January, February, by that time, that audiobook will be coming out.

Race, caring and mental health

The next book, which is not an audio book, will be in paperback form. I felt it was due time to come out. This is because I have been writing books close to two years now. I have also been running as carer groups, but two of them focus on ethnic carers coming from ethnic minority background, so obviously, they are providing care and support to someone experiencing some form of mental illness.

I’ve been meaning to develop a book like this for some time looking at how mental illness can impact on the family, on friends, not from the patient side. Let’s look at this new book closely. The book titled “Race, Caring and Mental Health”. From it’s first chapter, I often say to many people that it’s important to tell your story. With this book, I felt it even more important due to some of the tragic consequences that can happen to ethnic minority groups providing unpaid care. This is it’s not just within the mental health system as the book’s second chapter will be looking at discrimination and racism, and links to mental health, for the other chapters, they will focus on health inequalities and the structures. The book will explore the deadly roundabout regarding the repeat situations of those going in and out of the mental health system. Why does this occur?

I don’t have the answers and can only share my ideas of what I’ve seen and what I’ve heard, but I know what I’m learning about. I’d be really interested on people’s views of my new book, which is in draft form at the moment and I will probably change a couple of pages in the hope to release this around January 2023.

Providng Care and other Short Stories

Lastly my 6th piece of work will be an audiobook, similar to the project of the poetry audiobook. But this time I want to work towards fiction. Now, I’ve been writing two years now. Most of the books that I’ve been doing are not fiction at all. I mean, I suppose you could argue in some sense that poetry is looking at certain topics that may or may not happen. So this new audiobook will be my first attempt at fiction, including 20 short stories about unpaid care, here are some of the stories below.

This audio book will explore some of the following carer themes.

  1. Providing Care
    Story about a woman finding out her husband has developed a form of mental illness, she now has to battle to become an unpaid carer.
  2. Digging out of a hole
    A young man caring for his sister, but this time there are horrible things that make his life difficult.
  3. A family Affair
    Story of a main carer feeling isolated by the family, everything is thrown at her and no one wants to help.
  4. Never thought it would be me
    A female carer whose partner is caught in a serious accident, her life is turned upside down as she battles to provide care for him.
  5. Angry
    A carer thrown into anger and despair as she is let down time and time again, leading her to becoming angry.
  6. Just when I needed you
    A story of carer peer support and why it is needed, a story that is more hopeful than previous stories.

Anyway, thanks for stopping by. Hope you have a lovely holiday break.

More Carer Poems by Matthew McKenzie

Hello fellow unpaid carers. Here are some more poems from my book “The Poetry book of mental health caring”.

Every so often I tend to make videos of my poetry off my YouTube Channel.

The Long Wait – Poem by Matthew McKenzie

The Poem below describes my experiences in a hospital when trying to help my mother who was suffering mental and physical health problems at the time.

The unwanted role – by Matthew McKenzie

This poem below focuses on someone becoming an unpaid carer for the first time. The poem explains from their view that they are slightly aware of the difficulties they will face, but will have to face these challenges alone.

How do I say this? – by Matthew McKenzie

The Poem below explores the struggles a carer has in understanding mental illness. He is aware of the stigma when he is trying to communicate with his daughter, but he is dealt a blow regarding his own caring duties and also to fight to sustain a relationship with his daughter.

The Triangle – by Matthew McKenzie

The poem below explains a mental health policy aimed at NHS organisations to make sure carers are included in services. The Triangle of Care has a long history and is highly sought after by mental health NHS trusts to strengthen carer strategies.

To explore more carer/mental health poems from Matthew McKenzie, you can check out the book below on Amazon.

November Carer News Updates 2022

Latest carer and mental health news for November by carer activist and author Matthew McKenzie

November 2022 Carer and Mental Health news <- read more news items here

For the November edition on caring and mental health we have

Carers Active | Dance – Carers UK – YouTube Energetic dance routine to help carers get active.

Carers rights day 2022 – Bromley Well – Video from Carers Charity Bromley well on information about carers.

Carers Trust research reveals unpaid family carers experiencing unprecedented financial hardship with many now using food banks – News item on national charity Carers Trust report on how farers are experiencing financial hardship.

Cygnet Health – Carers’ Passport Launch – Launch of the new carer’s passport by private mental health organisation for Carers Rights Day.

Caring for the Carers – Hounslow Council offers support sessions on Carers Rights Day – How Hounslow Council is supporting carers for Carers Rights Day.

Who I Am Matters – CQC Podcast – CQC Podcast on the importance on the experiences of people with a learning disability and autistic people in hospital

Actions not words: The Chief AHP Officer Black, Asian, and Minority Ethnic Strategic Advisory Group (CAHPO BAME SAG) – Ruth Mhlanga Chair of the Chief AHP Officer BAME Strategic Advisory Group on supporting allied health professionals (AHPs) to work towards being anti-racist and anti-discriminatory

Helen Hayes MP visits the Nest, Southwark’s mental health hub for young people – MP Helen Hayes was joined with Cllr Jasmine Ali to meet staff at the service’s drop-in centre in Peckham to discuss the mental health support provided to young people

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SLaM Family and carer listening event 2022

Hello Fellow carers. A quick blog from me on the latest South London & Maudsley (SL&M) NHS Foundation trust’s recent families and carers listening event. Usually mental health NHS organisations run special events to bring together those who care and support someone with mental illness, especially those using the trust services. I have been to a few NHS organisation carer events, but was delighted to see SLaM were to host one close to carer’s rights day.

It has been around 3 years since the Maudsley hosted a listening event for unpaid mental health carers. I remember the last carer event held over at Southwark community coin street where we had some excellent speakers and the staff were very welcoming.

All of the past family and carer listening event focused on carers getting a chance to be updated and also to be heard. The 2022 event I felt was very different and gave a chance for carers to update each other, especially those who were very involved shaping maudsley trust services.

The family and carer listening event 2022 was held over at the Ortus, which is SL&M’s own venue for hosting small or large conferences, meetings, training courses. I have not been over to the Ortus for some years due to the Covid-19 pandemic, which also explains why SLaM has not hosted the carer conference for some time.

The carer event was chaired by Gabrielle Richards MBE who is the trust Head of Inclusion, Recovery, Professional Head of Occupational Therapy and AHPs. So yes, Gabrielle does an awful lot. Her role is also inclusion of carers and patients at the trust. Going back to the event, I arrived on a wet rainy thursday morning, since the event started around 9:30 am. It was not easy getting to the Ortus due to the maze of construction developing of the exciting new build, but maudsley staff were very friendly and helpful in directing me to the site.

The Ortus was very warm and comforting, I was handed SLaM’s latest launch of their Planning for the future bookley, carer’s strategy and emergency planning booklet.

I noticed with all the booklets there was a heavy carer influence especially from those who attend the NHS trust’s carers committee.

As I arrived, I was greated by staff and carers from each of the boroughs SL&M covers, which are Croydon, Lewisham, Southwark and Lambeth. We were served early refreshments as I caught up with those who I have not seen for a while. I noticed also carer governors doing their bit to engage and chat with other carers while also networking. Everyone was looking forward to the event.

The event was held in the large conference room downstairs with Gabrielle and Flora Ezenwoye, Chair of the Family and Carers committee welcoming the audience to the event. We then got a presentation from Alice Casey who is the Director of Programmes of the Maudsley Charity.

You can watch Brenda’s video below

Next was a listening exercise as the hosts asked carers what they would like to hear more about at the carer conference. Next we got to hear a carer’s story from Faith Smith who spoke about her involvement at the mental health foundation trust. A lot of new carers have not heard of involvement in shaping/influence services, especially services aimed at carers, so I noticed they paid a lot of attention.

One of my forum group members was unable to attend, but we got to see a video of Brenda who spoke about the importance of planning for the future. Brenda feels carers including herself must be supported to plan for the future as there is also a worry how a carer will cope when they are unable to care in later life. This helped explain the launch of one of the booklets.

We then got to hear from chair of the NHS trust Sir Norman Lamb who spoke about the NHS trust direction for carers, he also was proud what the trust has done with Triangle of care (inclusion policies aimed at supporting carers), but he admitted there are still many things to work on and nothing was perfect. I felt it very important those who help lead the trust make their presence known at events and also get a chance to listen to carers themselves.

This was when I got to do my presentation, which Sir Norman stayed to watch. All of my own projects tend to focus on networking and sharing ideas. So I presented on the importance of carer networking, events bringing people together and also holding to account. I spent most of the time asking carers to share ideas of what they felt was a good example of carer networking.

I also finished off with a carer networking poem from my latest poetry book “The Poetry book of mental health caring”, which you can purchase off Amazon. The poem taken from the book was called “The carer network”

Next we got to hear updates and service information from Chris McCree who is the Parental Mental Health Lead of the Helping Families Team and Perinatal Community Services. We also heard from Nick Hunter who is the Peer Trainer of the Fathers group. After the talk, we then had launch and got a chance to catch up with other carers we have not seen for a while, an exciting development was carers from the Croydon area started a new connection group, which I am now hosting, Usually I connect in Lewisham, Southwark and Lambeth and every so often I will go over to Greenwich or connect with my SW london group or West London carer groups, but I have not paid much attention to Croydon much.

I have now agreed to form more of a connection carers from that borough, especially since my SW London group gets some engagement from the SW London Integrated Care System and they cover 6 boroughs including Croydon. There is also exciting news regarding those boroughs, but I am keeping my mouth shut for now. In the end, it does not mean I am running a Croydon group, but it does mean we connect more online and it helps that carer governors are present in the group.

I also caught up with friends and carers from Southwark as I spoke to Toni King and Lorraine James who are from the Southwark Council mental health team. I mentioned to them I run a carer’s stall at several accute hospitals and would be glad to promote their service to carers at Kings College Hospital. I also chatted to carers who attend the Lambeth MH carers peer group and spoke to carers regarding the Patient Carer Race Equality Framework. So you can get an idea of what I mean about carer networking.

After a lovely lunch, we got to do another listening exercise to give feedback. Plus we got to hear from Margaret Whipp who talked about her experience as a carer and the importance of connecting on social media.

I often mention to carers that it is so important to get online and make your presence known. Online campaigning, connecting and networking works wonders for those who are isolated and caring for someone vulnerable. Due to the technological innovations pushed from the pandemic, the time to get online has never been more important. There was more exciting presentations and exercises being chair Yoga, Implementation studies helping to reduce racial Disparities, Triangle of Care Updates and also more carer stories.

There were also excellent presentations from Annette Davis who is the chair of PCREF service user and carer group at SLaM, plus she is also involved in the triple leadership for Southwark and also the facilitator of Southwark BAME peer group. Annette presented on LAMB training, which focuses on looking after yourself and carer wellbeing, plus another carer Carole Haynes did a talk on her experiences.

Overall I felt the latest family and carer conference was the best carer event yet from SLaM. I have been attending them for years. I think this one was the 5th or 6th carer listening event from SLaM that I have attended, so I think I know the terrain a bit. The reason this recent event turned out well was the format. The event was very well planned, although some things made the event run a bit late, I noticed the host state we should not worry or panic over such things, which I felt injected a form of mental wellness into the audience. These are things I look for as mental health professionals should practice what they preach. The event was very inclusive so we did not hear endless updates, but the audience got a chance to talk and be listened to.

Luckily there was no shouting and screaming about poor services as I got the feeling there was a form of empowerment and learning, there was of course talks about carer activism, but that is part of the empowerment principal. I also enjoyed the free food and nothing upset my stomach. Staff were very supportive and glad to see me and special thanks to Cath Collins who thanked me for my presentation. It was a shame I could not stay as I had to prepare for the Health Service Journal awards for 2022 (more on that later).

Still there was a lot of talk in my whatsapp groups about the event, specially from my Lewisham group and also the new Croydon group, even now as I blog there are good things being said about the event. I hope SLaM continue the work they should be proud of with the carer conferences. I will finish off with a poem I got a chance to read out at the event.

All my time I have been on my own
Then I heard it through another carer
It seems if I can get that carer’s network
Then understanding my role would be clearer

It is hard to know that your lost in the system
The more you speak the less they listen
I sick and tired of battling alone
As a carer I dont want to stay hidden

Then I was introduced to the carers network
They all said the same and wanted to connect
I feel an inner light that shrines through
And now I feel I am getting that respect

Still its hard to feel part of that movement
Things change so fast it is hard to keep up
If we are not kept ahead of all the changes
Then it is easy to see the carers network breakup

We look around to see other representation
For paid carers, professionals and service users
But what about our own carers network
Don’t unpaid carers also have futures?

Still for the time I have I am not on my own
I tell another carer what I have found
They also join the carers network
Where understanding their role is so profound

The Unwanted role – Poem From The Poetry of mental health caring

Welcome fellow carer viewers. I thought to add another of my carer poems to my website.

This is poem number 24 – The Unwanted Role.

This poem is from my latest book “The Poetry of mental health caring”, which you can find on Amazon.

I want you to reflect on the poem with the following questions.

• Why do you think the son is worried about caring?

• Do you think the carer will abandon his father? State your reasons why.

• Why is it important that someone should not feel guilty if they cannot care anymore?

• Why do you think it is important someone should continue to provide unpaid care?

Check out the book in the link below.

SW London MH Carer Forum September 2022

Welcome to a very late update of one of my carer forums. These are updates of the groups I run whose members are those caring for someone with mental ill health. For my September SW London carers forum, we were joined by Professor Caroline Glendinning who is the Emerita Prof of Social Policy at the University of York.

  • Prof Caroline presents on Carers and personal budgets

Caroline thanks us for having the chance to engage with unpaid carers and a way to learn from them. She was interested in our personal experiences, especially from the experience of caring for someone with a mental illness. She was pleased to see there are carer led groups fighting to engage with services.

Professor Caroline spoke at length regarding how Personalisation and carer policies have developed separately. She mentioned what the choices are disabled people, being either direct Payments/Personal Budgets/Individual Budgets.

She then spoke a bit about Carer’s rights being the importance of having a carer’s Assessment, how Carers Allowance Support should work and also the need for carer respite.

Professor Caroline gave some examples regarding cash schemes, but also highlighted some problems. Comparisons were from the following.

Where schemes were designed to support carers (Germany / Austria)
Plus some plans aim to increase choice for service users (England/Nlds)

Professor Caroline then moved into what trigger her research into these areas. These were “How do local authorities recognise/balance the rights, needs and wishes of service users and carers?”.

She wanted to find out what roles should carers play in assessment /planning support? Carers at the group were interested if there was there any consultation or involvement that was flagged up by her research.

Professor Caroline surveyed many Local authorities by running.

Lead officer interviews
Focus groups with front-line practitioners
Interviews with service users and carers

The results from her research lead to several findings, which Professor Caroline explained at length to the forum.

  • Joint/holistic family assessments desirable – carers usually involved
  • In practice assessments focused on service users – little attention to carers’ needs, apart from ‘willing and able’
  • Carers offered separate assessments but low take up
  • Even where separate carer assessment done, little consistent practice in bringing 2 together
  • Service user budget reduced by carer support
  • No guidance on carers’ role in planning service user support
  • Carers often involved in managing service user personal budget
  • Carers’ organisations not involved in developing personal budget policies/practice
  • Poor coordination of subsequent reviews of service users’ and carers’ needs

Discussion time from the group

Professor Caroline wanted to find out our experiences in regards to her research paper. There was a lengthy discussion on the following.

What were members experiences?
Any feelings regarding Assessments
How did people feel about Planning support
When did Reviews take place?

Professor Caroline then spoke about the conclusions of her research

Carers not involved in developing personal budget policies/practice
Failure to assess carer needs:
Just asked ‘willing and able’
Too few separate carer assessments
Service user budgets routinely reduced because of carer help
Funds for carer breaks included in SU budgets

This was a brief update to my SW London mental health carers forum.

October Carer News Updates 2022

OCTOBER 2022 Carer and Mental Health news <- read more news items here

For the October edition on caring and mental health we have

Barnardo’s Poignant Ad Spotlights Bond Between Child Carers And Project Workers – News item nsight into the bond between child carers and Barnardo’s project workers.

One in three Alzheimer’s carers has persistent symptoms of depression – The impact of depression on Alzhemier carers.

All Volunteers – Introduction to Carers UK – Video by Carers UK on the charities focus and the latest carers UK campaigns.

During Black History Month, let’s push for better mental health – News opinion on why Black History Month can help promote better mental health for black people.

Trying to connect with BME dramatherapists and students– Joint university research connecting to BME students.

Think Family Conference 2022: Mental Health and Community Services gather to celebrate how we Think Family to deliver better care – CNWL – Latest family/carer conference from CNWL NHS foundation trust.

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