Tag Archives: research

Becoming a Human Book at the DUALITY Event – The Carer They Didn’t See

By Matthew McKenzie – Carer Activist and Carer Advocate

On 8 September 2026, I had the honour of attending the DUALITY event at King’s College London, held at Bush House.

The event was a research and public/community engagement event connected to the INTERCEPTION study, based in King’s Department of Global Health & Social Medicine, within the School of Global Affairs / Faculty of Social Science & Public Policy.

There was a packed agenda, which I have shown below.

  • Registration, refreshments and photo exhibition — Attendees arrived, had refreshments and had an opportunity to look around the community photography exhibition.
  • Welcome and introduction to DUALITY — The organisers introduced the event and its focus on ageing, ethnicity, health and experiences of living with multiple long-term conditions.
  • Research Panel: Ethnicity, Ageing and Health — Researchers discussed work exploring inequalities and experiences at the intersection of ethnicity, ageing, health and multiple long-term conditions.
  • King’s Sport & Wellness energiser — Attendees were invited to take part in accessible seated stretches and movement exercises.
  • Human Library — Attendees could “borrow” Living Books for short conversations, hearing personal stories intended to build understanding, foster empathy and challenge assumptions. My Living Book was “The Carer They Didn’t See.”
  • Community information booths — Organisations and community representatives provided information and resources. This was also where I supported the Carers UK stall.
  • DUALITY Photography Exhibition — Photographs used visual storytelling to explore support, health, ageing and lived experience. My photograph “The Carer They Didn’t See” was included in the exhibition.
  • Photography Competition Awards — Winners of the DUALITY Photography Competition were announced, with “The Carer They Didn’t See” selected as one of the winning entries.
  • Creative performance — The programme included a creative lived-experience performance exploring identity, Caribbean heritage, racism, family, memory and culture.
  • Keeping Fit with Multiple Long-Term Conditions — This discussion brought professional and lived-experience perspectives together to explore chronic conditions, exercise, confidence and wellbeing.
  • Dinner and networking — The evening concluded with food and an opportunity for attendees, researchers, community groups and people with lived experience to connect.

This was quite a different event for me. I have attended many conferences, workshops and involvement events over the years as an unpaid carer, carer advocate and speaker. This time, however, I wasn’t simply attending or presenting.

Continue reading →

Ethnic Minority Carers Experiences of Inpatient Care

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

Supporting service users after exposure to coercive practice on mental health wards

Researcher Lewys Beames who is a PhD Student at the Institute of Psychiatry, Psychology & Neuroscience, King’s College London, is undertaking a research project looking at improving experiences for mental health service users on psychiatric inpatient wards.

Below is an invitation to a focus group for informal/ unpaid carers with experience of inpatient mental healthcare to discuss how service users should be supported after experiencing coercive practice.

They would particularly welcome:

  • People who also have experience of coercive practices such as, involuntary admission, physical restraint or forced medications,
  • and people from Black and racially minoritised groups and communities who we know are more often exposed to coercive practices in mental health services.

Some examples of the areas and topics the interview will cover are:

· Perspectives on possible different types of support that could be offered.
· Views on how this support should be delivered.
· Perspectives on how to use the current and developing research evidence to develop a support intervention for service users.

When will the focus group happen?

Service User Focus Group – 3rd May 2024, 10:00 – 12:00
Informal Carer Focus Group – 14th May 2024, 12:00 – 14:00

Interested in taking part?

Please get in touch with via the contact details below:

Email: lewys.beames@kcl.ac.uk

Text/ WhatsApp: 07876 875 892

Kings College London study into Breathlessness

Latest research focus for carers who support someone suffering from breathlessness. Kings College London are keen to explore some of the issues carers can face when the person they care for is breathless. This can be a symptom for people with heart and lung problems, respiratory diseases and cancers. It can be quite stressful and frightening for carers especially if they haven’t had support or training on how to cope with this.

If interested please contact eleanor rochester – eleanor.rochester@kcl.ac.uk

Exploring experiences of carers for someone with psychosis

Latest blog post by Matthew McKenzie on this exciting new research study from Molly Heeger who is a Trainee Clinical Psychologist from the Salomons Institute for Applied Psychology.

She is recruiting for her research project exploring family members experiences of supporting someone with psychosis. If you are caring for someone suffering from psychosis and would like to be involved in the study, please see poster below.

You can contact Molly through the following email : mh1216@canterbury.ac.uk

Research opportunity for carers of people with ‘psychosis’ – University of East London

Welcome unpaid carers. There is a new research Opportunity from the University of East London.

Carers can play a vital role in supporting someone with psychosis, particularly when an inpatient admission is needed, but unfortunately are often left out of important conversations. I’m hoping that this research can go a small way towards including carers’ voices in the discourses around restrictive practice/the development of inpatient services.

Alison Byrne who is a Trainee Clinical Psychologist at the University of East London is looking to reach people who are:

  • Over 18 years old
  • A relative or other carer (including friends) of someone who experiences ‘psychosis’ (e.g. delusions, hallucinations, or other unusual experiences; a formal diagnosis is not necessary)
  • Their loved one has had at least one admission on a UK inpatient ward relating to these experiences

See Poster below

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.

Research study-treatment for sleep problems in breast cancer patients

Hello fellow unpaid carers. A new blog post from carer activist Matthew McKenzie. I am promoting new research into treatments for sleep problems with breast cancer patients.

Sommer Agnew from Strathclyde University is researching on sleep problems in breast cancer patients, a very common issue in this population. They are currently conducting a study to investigate whether supporting breast cancer patients to improve their sleep could help them to take their hormone therapy medication (e.g. Tamoxifen, Letrozole), as many struggle to take hormone therapy medication due to side effects like this. 

The research is offering a remote, evidence-based intervention called cognitive behavioural therapy for insomnia, which is the recommended treatment for sleep problems. She is looking to recruit people who struggle with their sleep, are prescribed hormone therapy as breast cancer treatment, and who sometimes find it difficult to take their medication as prescribed (e.g., feeling the need to take a break from their medication, or forgetting to take medication sometimes).    

 Anyone who may be interested can contact Sommer directly through email (sommer.agnew.2019@uni.strath.ac.uk), the study Twitter (@SleepinBCStudy) or leave an email address through the following link if they would prefer for me to contact them:  

https://hass.eu.qualtrics.com/jfe/form/SV_3kEKYWdi7BIAX2u

May Carer & Mental Health News Updates 2023

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

May 2023 Carer and Mental Health news <- read more news items here

For the May edition on unpaid caring and mental health we have

Write to your MP – Carers Week – Stop asking your MP about potholes in the road, ask them something about the state of social care.

Carers’ Assessments webinar 16 May 2023 – Carers UK webinar on Carers Assessments

Somerset Carers Week 2023 – Somerset Carers centre promotion of Carers Week 2023

Northamptonshire Carers Podcast Episode 3 – Spring is in the air – Podcast about the caring and unpaid carers.

Carers Trust Heart of England once again awarded Coventry young carers contract – Well done Carers Trust Heart of England

Right to unpaid leave for carers set to become law – Splended campaign from Wendy Chamberlin.

Richmond Carer’s Centre – Supporting young carers – Richond carers campaign.

Give feedback on care – CQC – Important to give to CQC if you are a carer

Facilitators’guide: NHS@75 – Guide to help explain NHS England;s campaign

POhWER – Got a complaint? Need an Advocate? PohWER can help

RESEARCH PAPERS

Caregiver wellbeing during Covid-19: does being hopeful play a role? – Paper written by Juliana Onwumere, Elizabeth Kuipers, Emilie Wildman, Ava Mason, Daniel Stahl

Family intervention for psychosis: Impact of training on clinicians’ attitudes, knowledge and behaviour – Paper written by Jacqueline Sin, Steven Livingstone, Maria Griffiths, Catherine Gamble

In one’s own time: Contesting the temporality and linearity of bereavement – Paper done by Katherine Kenny, Alex Broom, Emma Kirby and Damien Ridge

Diversity BAME Mental health news updates

  1. Carers UK  good practice briefing for supporting Black, Asian and minority ethnic carers
  2. Caring for the carers: ITV Meridian presenter Sangeeta Bhabra’s letter to her younger self
  3. Black, Asian And Ethnically Diverse Carers – Carers Manchester

Diverse Experiences of unpaid Carers Across the caring Trajectory

A new research project is underway at the University of Kent. The research is called Diverse Experiences of unpaid Carers Across the caring Trajectory (DECAT). DECAT is looking for carers to take part in a telephone interview about their experience of being a carer. Currently, Black and Asian carers and carers who are LGBT+ are under-represented within our participants.

The main aim of this study is to understand the factors linked to carers’ satisfaction with social services and quality of life over time.

A questionnaire will be sent to a sample of carers recruited via four local authorities containing questions previously collected in the 2018/19 Personal Social Survey for Adult Carers in England, plus additional questions. The degree to which carers’ satisfaction and quality of life scores differ from scores collected in 2018/19 will be examined. Factors associated with changes will be explored and the scores of subgroups of carers will be compared.

You can contact Dr Diane Fox

Contact

Diane Fox
University of Kent
Personal Social Services Research Unit
Cornwallis Central
Canterbury
Kent
CT2 7NF

Email

d.fox@kent.ac.uk

See poster for details