The FOCUS Project, an international research study exploring the experiences of South Asian families who have a family member with intellectual and developmental disabilities.
Researchers are seeking to hear from:
South Asian parents and family carers
Adult brothers and sisters of people with intellectual and developmental disabilities
Professionals who work with South Asian families and children with disabilities
Families interested in sharing their experiences through surveys and discussion groups
The study aims to improve understanding of the challenges, strengths, and support needs of South Asian families, helping to inform future services and policies.
Ways to Get Involved
Work Package 1 – Family Survey Take part in an anonymous online survey exploring family experiences. Each section takes approximately 10–15 minutes, and participants can complete one, two, or all three parts.
Work Package 2 – Professional Survey Professionals working with children and young people with intellectual and developmental disabilities from South Asian backgrounds are invited to share their views on family-oriented partnership practices.
Work Package 3 – Online Discussion Groups South Asian parents and adult siblings are invited to join a small online discussion group lasting around one hour to share their experiences in more depth.
Your Voice Matters
Every family’s experience is unique. By taking part, you can help researchers better understand the realities of caring for a loved one with intellectual and developmental disabilities and contribute to improving support for future generations.
For more information about the FOCUS Project, please visit the study website or contact the research team at focus.project@uea.ac.uk.
To hear more about the project, they will present at my National ethnic mental health carers forum for the 26th of June. Book via my forum page.
By Matthew McKenzie – Carer, Author, Poet and Host of the Carers UK Information Stall 10 June 2026, Perceval House, Ealing
As a carer myself, supporting both of my brothers, I understand that caring is often a role we never planned for, yet one we embrace out of love, duty and commitment. It can be rewarding, but it can also be isolating, exhausting and overwhelming. That is why events such as the Carers Week Celebration 2026, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council, are so important.
I think it reminds us that carers matter, that our voices are heard and that we are not alone.
Having the privilege of hosting the Carers UK information stall, while also attending as a carer, poet and author, I witnessed first-hand the incredible sense of community that filled Perceval House throughout the day.
The event brought together carers, professionals, charities, community organisations and council representatives for a celebration that was both informative and inspiring. Alongside the opportunity to gather information and advice, carers enjoyed complimentary refreshments, free manicures from students of Uxbridge College, artwork exhibitions and the chance to connect with others who truly understand the caring journey.
Carer Stalls of Support and Opportunities
One of the highlights of the day was the large exhibition area, where carers could meet a wide range of organisations offering support, guidance and practical services.
The information stalls represented the breadth of support available across Ealing and North West London. Throughout the day carers visited displays from organisations including:
Carers UK
Ealing Carers Partnership
Ealing Carers Hub
Mind
RISE
Ealing Advice Service
Harlington Hospice / Harlington Care
Independent Mental Health Advocacy Services
Volunteer Centre Ealing
Eating Disorders Support Services
Community wellbeing organisations
Health and social care providers
Local voluntary sector groups
Arts and creativity projects for carers
Community engagement and peer support groups
Many stalls offered practical information about carers’ rights, benefits, wellbeing support, mental health services, respite opportunities, advocacy and volunteering. Others showcased creative projects and community activities designed to reduce isolation and improve wellbeing.
It was also great to see Carer Poetry displayed including the Carer Poetry group I run with Ealing Carers.
At the Carers UK stall, I had numerous conversations with carers who were seeking information about financial support, carers’ assessments, employment rights and how to balance caring responsibilities with their own health and wellbeing. What struck me most was how many carers were attending such an event for the first time and discovering services they never knew existed.
The exhibition also featured the moving “A Carer Is…” artwork display, where carers expressed their experiences through art. The exhibition provided a powerful reminder that caring is not simply a task—it is an emotional journey filled with love, sacrifice, resilience and hope.
Listening to Carers: The Ealing Carers Forum and Council Presentations
A major focus of the day was the Carers Forum and Question & Answer Session, where carers had the opportunity to hear directly from council leaders and ask questions about services, support and future plans.
The event was opened by senior representatives who acknowledged the enormous contribution carers make every day.
Among the key speakers were:
Paul Driscoll, Cabinet Member for Healthy Equal Lives, Ealing Council
Kashmir Takhar, Ealing’s Carers Commissioner
Senior representatives from Adult Social Care
Sophie (Assistant Director, Adult Social Care)
Representatives from Ealing Carers Partnership
Representatives from Ealing Carers Hub
Jane Wheeler, Chief Executive of Harlington Hospice
Paul Driscoll spoke about his commitment to understanding carers’ experiences and ensuring that Ealing’s Carers Strategy becomes a meaningful reality rather than simply another policy document. He emphasised the importance of recognition, support and partnership working with carers.
The presentation by Kashmir Takhar focused on Ealing’s Carers Strategy, a joint strategy developed in partnership with carers, health services, social care and voluntary sector organisations. The strategy highlights four key priorities:
Identifying carers early in their caring journey.
Helping carers maintain family and community life.
Supporting carers’ physical and mental wellbeing.
Helping carers maximise income and achieve their potential.
The presentation revealed that there are approximately 24,000 carers in Ealing, although many remain hidden and do not identify themselves as carers. It also highlighted the growing challenges carers face around mental health, financial pressures, access to services, respite care and social isolation.
Particularly encouraging was hearing about plans to improve access to information, increase wellbeing activities, strengthen respite opportunities and expand support for young carers and working carers.
The Power of Carers’ Voices
One of the most important aspects of the forum was the open discussion session.
Carers shared their personal experiences, raising concerns about respite services, communication between council departments, transport arrangements and the challenges of navigating complex systems while already carrying significant caring responsibilities.
A particularly powerful contribution came from a carer who described how difficult it had been to arrange respite care due to poor coordination between services. The honesty and emotion behind this contribution resonated with many people in the room because it reflected experiences that carers often face but rarely have opportunities to discuss publicly.
Council representatives acknowledged these concerns and committed to improving communication, responsiveness and coordination across services. Assistant Director Sophie openly recognised that carers deserve better experiences and welcomed continued feedback to help shape future improvements.
Representatives from frontline organisations, including Ealing Advice Service, also highlighted recurring issues encountered by carers and stressed the importance of joined-up working between agencies.
Later in the session, Jane Wheeler from Harlington Hospice explained how the organisation’s carers’ short break service supports carers through home-based respite, community outings and specialist support. Her presentation reinforced the message that carers themselves need care, support and opportunities to recharge.
It was more than just a Carers Event
As the day came to a close, what remained was a sense of connection.
For many carers, simply being in a room full of people who understood their experiences was invaluable. There was laughter, conversation, shared stories and moments of reflection. New friendships were formed, information was exchanged and carers left knowing that support is available.
From my own perspective, hosting the Carers UK stall and speaking with so many dedicated carers reinforced why events like this matter. Caring can often feel invisible. The hours spent supporting loved ones frequently go unnoticed by wider society. Yet carers are the backbone of our communities and health systems.
The Carers Week Celebration reminded us that carers deserve recognition not just during one week each year but every day.
To everyone who organised the event, staffed a stall, delivered a presentation, volunteered their time or simply attended and shared their story, I thank you.
Most importantly, to every unpaid carer reading this: thank you for everything you do.
Are you currently juggling the responsibility of caring for both a child and a care-dependent adult? If so, you may be what we call a “sandwich carer”—someone who provides care for loved ones across different generations.
At UCL’s Center for Transport Studies, They are conducting an important research study exploring the travel experiences of sandwich carers, and we want to hear from you.
Why Participate?
Sandwich carers play a critical role in our society, often balancing work, caregiving, and personal needs—all while navigating complex travel routines. However, little is known about how this group manages their daily transportation. Your input can help inform future transport policies and support systems to make travel more accessible and manageable for carers like you.
Who Can Take Part?
You are eligible if:
You are a carer for at least one child and one care-dependent adult,
And you currently live in England.
How to Participate
Simply scan the QR code in the flyer (see below) to complete a short pre-screening questionnaire. It only takes a few minutes and is the first step to being part of this valuable study.
Get Involved Today
Your voice matters. By participating, you’ll be contributing to research that could lead to meaningful change for thousands of carers across the country.
For any questions or more information, feel free to contact us at: 📧 njoud.hurr.20@ucl.ac.uk
Thank you for considering taking part in this important work. Please share this invitation with others who might qualify.
A Caring Mind 