Welcome back to another update from Carer activist Matthew McKenzie. I have some exciting research in which carers can feedback their experiences.
Ella Rose a researcher from University College London is conducting a study focusing on the experiences of carers from ethnic minority backgrounds of inpatient mental health care in the UK. There are currently very few studies documenting the experiences of ethnic minority carers of mental health services. She hopes this study will fill an important gap in current research and help identify the specific needs of ethnic minority carers, and how services can best support them.
Participation in this study will involve a one-hour interview to discuss their experiences as carers of a loved one receiving inpatient mental health care in the UK, their views, and their support needs. She is recruiting individuals over 18 who identify as being from an ethnic minority background and who are carers for someone currently or previously admitted to inpatient mental health care within the last three years. As a thank you for their time, she will offer participants a £25 voucher.
To take part in the study please see the poster below or email Ella at ella.rose.23@ucl.ac.uk
During Hoarding Awareness week 2024, I did a blog post on the excellent animation short that raises awareness of Hoarding.
The animation film is called ‘Of All the Things’ , which is partly funded by the BFI NETWORK, that delves into the complexities of a mother-daughter relationship amidst the challenges of hoarding disorder.
As a carer with lived experience of caring for someone with mental illness, I understand how the animation can offer a fresh perspective on the journey towards understanding and connection while aiming to raise awareness and combat the stigma surrounding this often misunderstood condition.
Welcome back to my carer site aimed at those caring for someone unpaid. As a reminder I run several online carer groups, one of them covers the boroughs of Southwark and Lambeth.
News just in for the London Borough of Southwark, that we have our Feel Good Festival for the summer.
The Camberwell Feel Good Festival returns for Summer 2024 with two Saturday festival events, packed full of fun and engaging health and wellbeing activities, free food and music, and vital support services for all ages.
After the fantastic success of last year’s Feel Good Festival, which attracted more than 1000 visitors, SE5 Forum invites everyone to this summer’s festival of wellness, community connection and joy.
I will also be at the festival to promote wellbeing for unpaid carers and also providing information from charities include Carers UK, Macmillan Cancer Support, Parkinsons UK, Age UK, Samaritans and Southwark Carers.
The Feel Good Festival hosts two free health and wellbeing events for the Camberwell community: on Camberwell Green on 6 July and in Ruskin Park on 13 July as well as a community picnic in Myatt’s Fields Park on 27 July.
There will be lots to see and participate at the Feel Good Festival.
I have great news regarding my poetry projects. I have now published the special edition of the poetry book of mental health caring.
The audiobook provides poems about the unpaid caring role, quite a few poems focus on what it is like to provide care for someone suffering mental illness.
This audiobook not only has the audio version of some of my older carer poems, but also contributions from unpaid carers around the country. Close to 3 hours of poems.
Thanks to the many carer centres supporting the project.
You can purchase the audiobook via Google Play for £2.40. Here is the screenshot below, where you can listen from your computer, or play the audiobook from your phone or tablet.
The audiobook contains over 100 poems and can be purchases from the link below.
During Carers week 2024, I attended and supported a number of Carer events. This blog post is about the event held at Sutton Carers who do a lot for unpaid and young carers for the borough of Sutton.
Sutton Carers provides the following and more for unpaid carers in the borough
Support groups Information and Advice Wellbeing advice Specialist carer support for dementia carers Specialist carer support for end of life carers Specialist carer support for Mental health carers Parent carer support Money advice
Sutton Carers even has a blog section off their website, I have noticed they are often busy campaigning for carers during awareness events. I would like to thank Sutton Carers for including my video for Mental Health Awareness Week 2024
For carers week 2024, Sutton Carers held a carers day at their centre over at Benhill House located at 12-14 Benhill Avenue in Sutton.
Sutton Carers have a range of advice and information on support services aimed at carers, which you can see below
I spoke to a number of staff about the activities provided and was introduced to quite a few rooms. Most importantly I spoke to a number of carers to listen about their caring role, although most felt relaxed and were happy to forget about their worries.
After reading up on a few services, I took the opportunity for a free health check.
I was given the all clear, but I see the importance of having a health check because all too easily, carers can neglect their own health needs because they might concentrate on providing care for the ‘cared for’. Sometimes the stress of caring can also lead to physical health issues, so its worth getting a free health check if you are a carer.
Carers week 2024 is drawing to a close. There were a few carer centre events that I attended in order to support and raise awareness of unpaid carers. One of the events was from the Ealing Carers Partnership event.
Ealing Carers Partnership is a new service supporting adult unpaid carers in the Borough of Ealing by providing Wellbeing activities and respite care. The service is funded by Ealing Council.
It was with great pleasure to be invited to support Ealing Carers Partnership and help raise awareness for the borough of Ealing.
London Borough of Ealing
Ealing Carers Partnership is a collaboration between Harlington Care, Carer’s Trust Hillingdon and Ealing and Hounslow Community Voluntary Service. As mentioned from the poster above, Ealing Carers Partnership provided 2 carer events.
I supported the event at Sycamore Lodge with my Carers Stall.
We had a number of other stalls at the Carers event. The stall next to me was the diabetes awareness stall. My late mother suffered with diabetes, so the stall meant a lot to me. I must thank Diabetes UK for handing out a lot of leaflets for me to promote.
We also had a stall from Dementia Concern. Dementia Concern has been providing support services for people with dementia and their carers in the London Borough of Ealing since 1982.
Dementia concern is a unique charity with specialist expertise. They have developed our knowledge over many years by working closely with local partners, GP surgeries and wider health organisations, such as the West London NHS Trust.
The direct services offered are:
Dementia link workers supporting acute health needs Information and advice through dementia advisers Weekend social clubs at two venues Community support service for people with dementia living alone Dementia cafés for patients and their carers Activities for carers
Another stall I visited was the Ealing Special Educational Needs and Disability Information and Advice Support Service (SENDIASS) which offers free, confidential, accurate and impartial advice and support to families living in Ealing with a child up to the age of 25 who has special educational needs or a disability (SEND).
We also had a stall from the Ealing Community Partners. ECP is led by West London NHS Trust, and all services in ECP are delivered under the direction of West London NHS Trust.
This stall was the Care coordination service which aims to keeps patients with complex health and care needs well at home.
Energy and payment support services
There were also stalls providing information to help tackle the cost of living. One stall was from the National energy action.
National Energy Action is the national charity working to end fuel poverty in England, Wales and Northern Ireland. Find out more about the challenge we face, the difference we make, and the difference you can make.
The other energy support stall was from Green Doctor.
Green Doctor offer free, impartial advice to help people take control of your bills, save energy where possible in the home, and access other services and initiatives available. They can provide different kinds of support, whether that’s advice on paying off debt with energy or water companies, or spotting other concerns for a referral to other services.
Other stalls present at event
During the event, we all were invited to speak about our stalls. I spoke on providing information from Carers UK, Macmillan Cancer Support, Parkinsons UK and other carer support information
Ealing carers partnership event allowed me to read a carer awareness poem from my book. I also presented the carers centre with my poetry book and signed it for them.
All in all the event turned out very well. My carer stall was very busy with visiting carers asking advice and information.
Here is my latest blog post from my carers website. This site focuses on events, thoughts and awareness of unpaid carers, especially those who care for someone with mental illness or suffering through cancer.
For Carers Week 2024, I was back over at the Maudsley site based in the London borough of Southwark. South London & Maudsely were doing a special follow up event from their Carers conference held last year for 2023. During the conference, many carers contributed to a number of poems which has led to the a carer poetry book.
The carer poetry book event took place over at Maudsleys NHS training and events centre, The Ortus.
Over the years, I have attended many mental health and carer events, including attending meetings and engagement events. It was with great pleasure to attend a poetry book launch which was driven by carers from the boroughs of Lambeth, Southwark, Lewisham and Croydon.
The event was opened by Gabrielle Richards who is the Head of Inclusion, Recover and Professional Head of Occupational Therapy and Allied Health Professionals at South London & Maudsley. Gabrielle also oversees Triangle of Care at the NHS mental health trust.
Gabrielle was joined by carer Faith Smith and Ann Morgan who led on the ideas for poetry inclusion from carers who attended the Family and Carers listening event
Faith and Ann read a number of poems while commenting on the poetry books development. We also heard from Rob Frowen winner of the 2017 Carer of the Year Award and Chair of Lancashire & South Cumbria NHS Foundation Trust Service User and Carer Council.
You can also view Ann reading a poem below.
A large number of carers also took turns to read some poems including carer advocate Brenda.
We were also joined by Carer and poet Jo Lambet and myself who also promoted the importance of poetry and how carers can connect and tell their experiences through creativity. Later on during the event, I spoke about the importance of poetry and how this can help carers relate to each other while exploring their experiences of caring and sharing this with others.
I also did a spoken word section from the poetry book I released in 2023, which is being edited into a new edition to include poems from unpaid carers around the country
You can view the section of myself and Jo performing some poetry and my talk about the importance of including carers to give space to poems.
I enjoyed the carer poetry book launch event and hope the book can make history or at least show how carers over in South London can be included to experess their exprience of care via poetry.
Welcome to another carer awareness post from carer activist Matthew McKenzie. This post was done during Carers Week 2024, the theme “Putting Carers on the Map”.
Many up and down the country were busy putting carers on the map, but quite a few were also rewarding those who helped put carers on the map.
I was over in the London borough of Harrow to help celebrate the amazing work Harrow carers does for the community of Harrow for their Carers Week Family Celebration.
Harrow Carers was easy to get to and despite the slight rain, everyone was in a good mood.
Harrow Carers centre supports carers of all ages over the phone, through face-to-face contact, support groups and workshops.
Their services include support groups, counselling, wellbeing sessions, hospital discharge, befreinding, events, advice and information. They also work closely with local and national agencies and can signpost carers to specialised sources of support.
On thursday 13th of June, I attend Harrow Carer’s “Family Fun Day”. A place where carers and the community can come together and celebrate, but also forget about their daily struggles.
While visiting the Harrow Carers site, I was shown around the festivities and facilities that they have built up over the years. Harrow carers have a large park area and have built a Barbecue
I was also shown their wellbeing garden.
I was greated by the CEO of Harrow Carers “Charmian Boyd” who showed me around the facilities. She talked about the special day and my role as one of the 3 judges to judge the “Harrow Carers Awards”.
The nominations for the awards were as follows
Young Carer Award for someone under the age of 18 who goes out of their way to help and support others.
Young Carer Award for someone under the age of 18-25 who goes out of their way to help and support others.
Carer going above and beyond Award for someone who goes out of their way to help and support others.
Longest serving / lifetime achievement Award – A carer who has faced big challenges themselves but has continued to care for someone a long time.
Outstanding contribution to the community Award – For someone who spends their spare time volunteering to support carers and fundraises.
General Practitioner Award – Award for a GP Pratice that has made a concerted effort to support carers.
Social Worker of the year Award
While judging for the awards, I was amazed at how the community of Harrow supported each other and setting up the facilities for the event.
The staff at Harrow were welcoming and supportive. Everyone was so friendly and the food served was very tasty.
I also enjoyed judging and helping to present the awards, as you can see below
Plus enjoyed the music and taking part in the raffle
All in all, I enjoyed spending time with the caring community of Harrow, everyone there has the focus on creating a caring community and I look forward to collaborating with the community in future.
Welcome back to another of my carer blogs during Carers Week 2024. Lots of carer engagement and awareness events are still taking place as we are midway through Carers Week.
As a Cygnet Carers network ambassador, I was proud to be invited to present on my thoughts for Carers Week and the focus as to why families, friends and carers are important to Cygnet. The event was the “National Carers, Families and Friends Network Event”. This event took place over at Cygnet Churchill on Thursday 13th June 2024.
As I entered the premises the Cygnet staff were friendly and welcoming, I felt relaxed but excited at the same time. Looking at the event agenda, we had some excellent speakers for attendees both professional and families and carers.
David Willmott who is cygnet’s Director of Nursing opened the event. David spoke about Cygnet’s passion to engage with carers, but to get it right we need to consider families and carers as the experts.
With the ideas of cygnet’s Carer lead Laura Sheridan, Cygnet has made lots of progress, but there are still many things to develop.
David spoke how important it is to develop ideas with the audience and introduced who was going to speak.
Matthew McKenzie presents the importance of Carers Week
When David introuced my session to present to the audience, I spoke about the importance of Carers Week 2024. I have been a carer most of my life regarding my two brothers, but things became immensely difficult when my mother became diagnoised with schizophrenia. For many years I cared alone for 3 people and the impact it had on me was horrendous. I still suffer the scars of unpaid caring experience, but with the support of Carers UK and Carers Trust I feel I can cope.
My caring role led to carer activism, a powerful role that helps engage with whole communities and charity organisations. I spoke how busy I was doing Carers Week and even provided a poem or two which you can see below.
Also speaking at the event was Dr Neil Churchill who is NHS England’s Director of People and Communities. Due to the election Dr Neil could not say much, but did speak about his own carer experiences and the importance of the NHS. Dr Neil also mentioned what is currently available for carers under the NHS, but things could change.
Next up to speak was Nisha Cunnane who is Cygnet head of Pharmacy Services. Nisha spent 25 years working in Various phamacy settings, including hospitals and prisons. She is passionate about patient education and empowerment, this includes caregivers as she promotes they have a pivotal role in enhancing the overall well-being of the cared for.
Nisha spoke about Empowering Carers when guiding them through medication management. She spoke about what medication management actually means and their challenges to unpaid caers.
These challenges would be carers being overwhelmed with multiple medical factors and trying to avoid the risk to potential medication errors. Spotting side effects are also very important to caregivers of those with mental illness, but it also helps to tackle communication barriers with healthcare providers.
Nisha also spoke about medication adherence and top tips for carers and families. She answered questions about medication safety and medication side effects and she also pointed out the importance of collaboration and access to information.
We then had a carers story and her focus to engage with other carers. This was Veronica Kamerling and you might have remember her from the series of carer activist interviews I am currently running.
Veronica spoke passionately about caring for her two daughters who both have an eating disorder, verconica also spoke about caring for her brother who was diagnoised with schizophrenia. Due to her lived experience and carer activism, she runs her own organisation “Eating disorders & Carers”. She has been associted with Triangle of Care for many years as Cygnet strives to embed the Triangle of care in their hospitals.
Listening to Veronica drove home the memories and experience of my own caring situation. It reminded me why I try so hard to engage and involve unpaid carers in my network and also Cygnet carer’s network.
Other speakers were Julian De Takats who is a Parent and Carer. He is also a Cygnet Expert by Experience Carer Ambassador and helps provide carer awareness training at many of Cygnet hospital sites. Julian’s talk helped remind why it is so important to involve carers in shaing services.
We also had Juliana Onwumere from the Institute of Psychiatry, Psychology and Neuroscience speaking about their focus on families and carers, especially with the new online course for training carers about Caring for People with Psychosis and Schizophrenia
Unfortunately I could not stay for the full event as I was required as a judge for Harrow Carer’s Awards for 2024. Harrow carers ran their “Carers Family Fun Day” for Carers Week 2024. That is another blog for another day.
However for the National Carers, Families and Friends Network Conference, I felt Cygnet put a lot of work into presenting why they do an amazing amount of energy to set the standard of involving unpaid carers.
Welcome back to my carer website. As you might already know I faciliate the London Cancer Caregiver group. The group is supported by several London NHS trusts who also seek feedback on cancer services at 3 of their 8 hospitals.
You can take part
If you have been diagnosed with, or treated for cancer at Hammersmith, Charing Cross or St Mary’s hospitals within the last 12 months.
Or
If you have supported someone important to you who meets the above criteria. For example, you have attended appointments with them or helped them understand information.
If you wish to send feedback please contact – imperial.userinsights@nhs.net
A Caring Mind 