Monthly Archives: October 2023

Carers and hospital discharge toolkit – St George’s University Hospital

Here is another blog post from carer activist Matthew McKenzie. I recently just came from a steering group event from St George’s University. This took place on the 30th of October. The groups focus was on how the hospital trust can work towards identifying and supporting unpaid carers.

St Georges University Hospital

It might seem such a silly question, but I am sure someone out there is asking why should hospitals work towards identifying unpaid carers?

There simple question is unpaid carers are struggling. They struggle with caring for someone and will expect to struggle when their loved one is discharged from hospital. If the carer is not identified then all to often the carer will have a bad experience of hospital services, which will probably impact on the cared for.

This has to change and fortunately there is a new strategy to improve carers discharge using a toolkit called the “Carers and Hospital Discharge toolkit“

This initiative is from NHS England which was co-produced with carers and patients in mind.

Every so often I pay some attention to acute hospital trusts. I even have a carers stall at St George’s University hospital, just as I do at some other hospitals. I was delighted to be invited to the steering group to see how things are progressing with the hospital trust.

Implementing a carer initiative regarding patient discharge is no easy feat. St George’s university hospital is a massive trust with around 9000 staff. Part of the Epsom and St Helier group. St George’s serves a population of 1.3 million across southwest London possibily covering 8 London Boroughs.

So what were the updates from St Georges Carers Steering group?

Well with the group chaired by Wendy Doyle who is the NHS trust Head of Patient Experience.

There was the launch for Carers Week in June 2023, the NHS acute trust has done the following

  • Started to connect with colleagues and key collaborations including healthwatches, NHS staff and carer centres.
  • St Georges team have also Identified an Executive Sponsor
  • Plus they continue to raise awareness of the toolkit
  • They hosted the first steering group with the focus on when to run the group.
  • The group also looked to how they could implement the toolkit.
  • They looked at implementing toolkit as a QI project
  • The team also spent time with discharge team, Rise, Cerner leads, London care Record, and NHSE to explore date capture

What impressed me on what St Georges hospital trust were doing is tailoring their patient system “Cerner” with a method of recording carer information.

There also has been a lot of work on the new carer’s leaflet, which was co-design leaflet for staff to signposting to carers. Since I have a carers stall, the leaflets will be useful to help engage with carers.

There will be a lot of work to do, but I am impressed with how far the university hospital is making a difference for unpaid carers.

Happy 35th anniversary Cygnet – The journey continues

It has been an incredible time since I have become involved as one of the carer network ambassodor to cygnet. Since the triangle of care was launched many years ago, several organisations have taken up the chance to reach and engage with families and carers. I have watched closely the work NHS organisations have done to make a difference and improve people’s lives.

One thing I have noted is that most organisations work very hard to implement a practice of identifying carers, but from what I have seen and been involved with at Cygnet, they have done so much to make the triangle of care a success. Ever since I have been involved at Cygnet, they have reworked many policies to be in line with the Triangle of care vision.

There have been several carer network events at many of Cygnet’s hospitals including Sites in Harrow, Bury Hospital, Maidstone Hospital, Cygnet Hospital over in Bierley, Churchhill on Lambeth site, Tauton and many more sites. From each carer network event I learn more from those who attend and I can see how Cygnet works so hard to improve people’s lives.

With the guidence and support of Laura Sheridan who is Cygnet’s lead for Triangle of care. She has brought together carers to promote the importance of networking in a peer environment. We all contributed to the development of Cygnet’s carers strategy. With the highest level of co-production there was also a development and successful launch of Cygnet’s Carers charter, amendments to Cygnets Social care Admission policy and involvement on the Carer, Family & Friend survey.

With the guidence and support of Laura Sheridan who is Cygnet’s lead for Triangle of care. She has brought together carers to promote the importance of networking in a peer environment. We all contributed to the development of Cygnet’s carers strategy. With the highest level of co-production there was also a development and successful launch of Cygnet’s Carers charter, amendments to Cygnets Social care Admission policy and involvement on the Carer, Family & Friend survey.

There have been numerous promotions and platforms to promote the networks voice as members helped in developing online courses via the Cygnet Masterclass carer course. I have also been given the chance to share my lived carer experience through filming.

The carer network has worked so hard to develop links to families and carers who use Cygnet services. We strive to make a difference in people’s lives and with the support of the network, carers can feel counted.

I wish Cygnet a happy 35th Anniversary and I look forward to joining Cygnet on it’s Journey into improving lives.

Mental healthcare and coercive practices

Another blog post from carer activist Matthew McKenzie. New research over from Kings are looking for service users, carers and inpatient mental health staff members with experience of coercive practices such as restraint in inpatient mental health settings.

If you are interested to give your views, please contact

Lewys Beames
PhD Student
Department of Psychology
Institute of Psychiatry, Psychology & Neuroscience
King’s College London
Email: lewys.beames@kcl.ac.uk

Southwark Black History Month 2023

Continuing on the Black History Month focus. I have added another post due to receiving my poem being read wonderfully by carer Annette Davis.

Recently there was a Black History Month event held over at South London & Maudsley NHS Foundation Trust. I was due to attend, but had other commitments. It was a shame, since I attended the previous Black History month event at SLaM NHS. The event included food, music, stalls and poetry.

Annette Davis a carer who I have known a very long time is the Chair of the PCREF Service Users and Carers Group at our local mental health trust.

She is very dedicated to her role and champions working together with health services. Annette has her own ethnic carer group over in Southwark and at times we do collaborate. I was astounded by Annette’s performance of my poem and had to a video of her reading my Black History month poem shown below.

Our History to Celebrate – Poem by Matthew McKenzie read by Annette Davis.

Experiences of caring for a black person with disabilities

Welcome carers. Another new research project for unpaid carers to get involved and feedback their lived experience. This research is from Emily Oputa who is doing her Postgraduate Research in Psychology. She is studying at the University of Surrey.

Emily would like to interview carers and hear about their experience of caring for a Black person with a lifelong disability including ageing.

If you want to give your views please contact Emily Oputa at eo00455@surrey.ac.uk

See poster below for details.

Exploring the experiences of carers from Black communities

Welcome fellow carers. As of writing this blog post, it is still the start of Black History month 2023. There are many exciting events taking place. I will try my best to help promote ethnic carer events.

Luckily we have an event aimed at unpaid carers from Black communities. We have to explore and acknowledge that not all carers experiences are the same. Just like I often say not all carer journeys are the same.

As part of Black History Month, Dr Juliana Onwumere from the Institute of Psychiatry, Psychology & Neuroscience at King’s and South London and Maudsley NHS Foundation Trust will facilitate an online panel discussion focussing on the experiences, wellbeing and unmet needs of carers from Black communities in the UK, including young carers.

This event is open to anyone including members of Black communities across the UK.

Panel members:

  • Tim Banks, Research & Engagement Manager, Carers Trust
  • Peter Alleyne​, Director of Equity, Inclusion and Involvement, Rethink Mental Illness
  • Angela Anwah, Founder & Director: Mental Health and the Arts
  • Michael Shann, Head of Carer Support, Carers UK

Black History Month 2023 – Crawley Musuem

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.

Black History Month 2023 – What it means to me

Welcome to another blog post by Matthew McKenzie carer activist and one of the carer network ambassdors for Cygnet.

As of this month for October 2023 it is Black History month. This month is a special theme for me since the theme is ‘Saluting our Sisters’. The theme highlights the crucial role Black women have played throughout history.

There are so many famous black women throughout history

Rosa Parks – for her courageous participation in the Montgomery Bus Boycott to push forward the civil rights movement against racial segregation on public transport.

Maya Angelou – who was famous for poetry and also a civil rights activist.

Mary Seacole – Contributing to medicine and nursing where she even helped British soldiers being injured in the Crimean war while fighting discrimination.

There are of course many more famous black sisters who are far too numerous to mention, but the above have shows the importance history plays in shaping our lives.

Still, I want to focus on someone very special and dear to me as she has not only shaped my life, but in a strange way inspired many others. Around 2019 during the pandemic the country was fighting an unknown and dangerous virus. That virus turned out to be COVID-19 and the outcome changed my life. My mother struggled with her mental illness in her later years, which in turn led her to also struggle with her physical health. With resources running low in the health service my mother was the unfortunate casualty of dwindling health resources during the pandemic.

Like so many other vulnerable groups. My mother did not actually die of virus, but just could not access emergency healthcare as resources were focused on covid victims.

The impact left me wondering what could I learn from my many years of caring for my mother. I had a choice either to share my story to other carers or completely move in another direction of my life. I made the former choice, because it helped me heal and also pay rememberance not only to my mother, but to myself.

So around 2020 I wrote my first book about my experiences as a mental health carer. The book was called “A caring Mind”, which was named after my blogsite which was born raising carer awareness after writing blogs for South London & Maudsley NHS trust.

Even when caring for my mother, I was also helping to care for an old friend who also inspired me to write. However it was my mother Rosemarie McKenzie who spent so much time writing poetry. My mother also wrote stories and even managed to get a story published in a magazine while she was struggling with mental illness.

My mother enjoyed singing and used to sing at our local African/Carribean community centre (family Health ISIS) that catered for those struggling with mental illnes.

Rosemarie McKenzie to the left dressed in white

My mother inspired many other clients at the community centre to be creative with poetry, singing and writing. It did not matter the mental struggle other clients was going through at the centre. They saw my mothers, as long as they could be creative, it helped them express traumatic feelings in a positive way. This was one of my mother’s strengths. No matter how many times she was would suffer with her health, she always found strength to be more than her illness. She made me find cause in highlighting awareness for vulnerable groups. This in turn led me to continue writing and using creative ways to express my lived experience.

Of course I could never fully understand my mother’s illness and could only express my mothers creativity as a dutiful son and a mental health carer. In the end I feel we cannot always look to the famous and fortunate of our black sisters. We all contribute to history in our own way. My mother used her own creativity to tell her story and I will continue that story hoping to contribute to black history.

Thank you for reading.

London Cancer caregiver forum September 2023

Welcome to a quick update of the London cancer support and engagement forum. The group is for those caring for someone diagnoised with Cancer. Just a quick message regarding a carer. A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

My focus on carers are those caring for someone with mental ill health or cancer. For the September group, which is run online we were joined by some new carer members. One was from NHS England giving support to the new group. We started off with a peer session as those caring for someone with cancer wanted to share their experiences. Most members who attended had loved ones recieving pallative care due to the late stages of cancer.

We then had our guest speaker who kindly engaged are carer members. The speaker was Gabrielle Brown who spoke about her paper “How pancreatic cancer impacts carers in the UK: why do we know so little?”.

Gabrielle Brown is the Staff Nurse, Guy’s and St Thomas’ NHS Foundation Trust.

Her paper sourced in the British Journal of Community Nursing . Jun 2023 looks at how Pancreatic cancer is a disease with poor life expectancy and high symptom burden.

The experiences of the spouses, family and friends who care for this group is poorly understood, especially during palliative care and within the UK.

The Aim of the paper is to highlight the current gaps within research and provide some insight into the challenges faced by carers assisting those living with pancreatic cancer, and how community nurses can support this group.

Gabrielle talked about the number of unpaid carers and how important they are to health and social care. She mentioned the World Health Organisation guidelines and the challenges of them being followed. There needs to be offered need assessments for both carers and patients.

Gabrielle pointed to the recent Carers UK survey which highlighted a lack of support for carers. She then mentioned the situation pallative care discharge issues and what here paper raised regarding carer guilt and grief, especially if their loved one had a short life span due to cancer.

When agressive cancer does strike, it shows the carer had a lack of time to adjust and this ends with an increased level of anxiety and depression.

The group were interested in the talk and raised several questions. This concludes a brief update of my London cancer caregiver forum.

You can find out more of Gabrielle’s paper below.

https://www.britishjournalofcommunitynursing.com/content/professional/how-pancreatic-cancer-impacts-carers-in-the-uk-why-do-we-know-so-little

Healthwatch Lambeth – World Mental Health Day 2023

Live in Lambeth? Healthwatch Lambeth are marking World Mental Health Day for Wednesday 18th of October. The aim of Healthwatch is to give citizens and communities a stronger voice to influence and challenge how health and social care services are provided within their locality.

World Mental Health Day 2023 is an opportunity for people and communities to unite behind the theme ‘Mental health is a universal human right” to improve knowledge, raise awareness and drive actions that promote and protect everyone’s mental health as a universal human right.