On Friday 12th September 2025, I had the privilege of attending Abilities Development’s Awards Night: Celebrating Unpaid Carers at The Grange in London. The event was a moving and powerful reminder of the sacrifices, love, and resilience shown by unpaid carers across our communities.
The event was hosted by founder Dr Karen May, who spoke passionately about the vision to celebrate and support unpaid carers. The evening also included tributes from fellow carers sharing their lived experiences, moving reflections on the sacrifices and strength carers show daily, and recognition from community leaders.
As many of you know, unpaid carers often go unseen, their daily contributions hidden behind closed doors. Yet they carry the heavy responsibilities of looking after loved ones with compassion and strength, often without formal recognition. This event was different, it put carers at the centre, reminding us all that their efforts matter and deserve to be celebrated.
We were given a tour of the facilities available for unpaid carers and their loved ones to us.
One of the highlights of the evening was the presentation of awards and certificates to unpaid carers. Each recipient was honoured with a Certificate of Honour in Caregiving, recognising their unconditional love, tireless dedication, and the invaluable role they play in supporting their loved ones without financial reward or formal recognition.
The evening, attended by the Mayor of Brent and other distinguished guests, was filled with speeches that spoke to the heart of caregiving, its challenges, its emotional toll, but also its incredible strength. One message that stood out was that carers must not forget their own worth and wellbeing. As was beautifully said on the night: “You are important. Take moments for yourself so you can rejuvenate, be well, and stay healthy.”
I was truly honoured to receive a Certificate of Honour in Caregiving myself. This certificate recognised the unconditional love and tireless dedication of carers who, without pay or recognition, give their heart, time, and energy to provide comfort, dignity, and hope. Holding it in my hands was not just a personal moment of pride, but also a reminder of the countless carers whose work too often goes unnoticed
Events like these are not “just another event.” They are opportunities to create legacies and spaces where carers are not only seen but also valued, uplifted, and supported. They are about passing on the message to future generations that caring is not a burden, but a profound act of humanity.
As someone who has long campaigned for carers’ voices, I want to encourage others to support, promote, and attend events like this. Whether it’s through organisations like Abilities Development, local carer networks, or even small community groups, recognising unpaid carers is vital.
To every unpaid carer reading this: you are a quiet hero. Every sleepless night, every whispered prayer, every act of kindness you show it matters. You matter.
Carers can book to use The Grange by contacting Abilities Development directly. Whether it’s for a quiet space to reflect, joining a carers’ group, or making use of tailored support services, The Grange offers a safe environment built around compassion and community.
by Matthew McKenzie – National Ethnic Mental Health Carer Forum Chair
In August, the online National Ethnic Mental Health Carer Forum came together once again to confront difficult but necessary conversations about systemic racism, discrimination, and the experiences of ethnic minority carers within health and social care. The forum, hosted by Matthew McKenzie, provided a platform for carers, professionals, and researchers to share insights, frustrations, and plans for change.
Focus on Racism and Discrimination
This month’s forum was unflinching in its focus: racism in health and mental health systems. Attendees shared powerful testimonies of racial abuse and discrimination, highlighting how these experiences undermine trust in services and affect both carers and those they support. There was a clear call for honesty – participants stressed the importance of naming racism directly, rather than disguising it behind euphemisms.
The group also discussed the overrepresentation of Black and brown people in prisons, the lack of tailored initiatives for older Black carers, and the persistent inequalities faced by ethnic minority families trying to navigate mental health and social care support.
Research and Evidence from Carers Trust
A key presentation came from Andrew of Carers Trust, who shared research into the barriers faced by Black, Asian, and minoritised ethnic carers. The findings highlighted widespread issues: discrimination, language barriers, lack of cultural competence, and difficulties in accessing benefits. Andrew emphasised the need for culturally inclusive services and stronger outreach strategies, while acknowledging feedback from the forum that research and advocacy must be explicit about racism rather than avoiding the term.
Andrew expanded on the importance of equity in benefit advice, pointing out that many carers miss out on their entitlements because information is inaccessible, overly complex, or not communicated in culturally relevant ways. He called for dedicated advice services that are not only multilingual but also sensitive to carers who may not self-identify as such.
He also spoke about the impact of social isolation on carers from ethnic minority backgrounds, who often have fewer support networks and face stigma within their own communities. Addressing this requires building trust with local organisations and ensuring carer support is visible in spaces where communities already gather, such as faith centres or community hubs.
Finally, Andrew outlined the Carers Trust’s national strategy, which involves working more closely with local carer organisations, producing research that amplifies marginalised voices, and lobbying for systemic reforms. He highlighted how this forum’s feedback directly shapes their advocacy, showing a real commitment to partnership.
Questions raised during Carers Trust’s presentation:
How can Carers Trust ensure its research explicitly names racism rather than using softer language?
What specific support can be offered to carers who do not self-identify as carers and miss out on benefits?
How can Carers Trust improve its complaints handling processes, particularly for carers facing racism and discrimination?
What role can MPs and lobbying groups play in supporting Carers Trust’s advocacy for ethnic minority carers?
How will Carers Trust ensure its multilingual materials are distributed widely enough to reach isolated communities?
Hampshire & Isle of Wight NHS Anti-Racism Initiatives
Usually NHS Mental Health trust representatives update on anti-racism initiatives at the forum. This time Hampshire and Isle of Wight engaged with minority carers.
Elton who is the Diversity and Inclusion Partner from Hampshire and Isle of Wight NHS Trust provided an update on their anti-racist programmes, including the rollout of the Patient and Carer Race Equality Framework (PCREF). The trust has begun implementing cultural competence training, engaging with local communities, and embedding anti-racism into its wider mental health services. While early in its journey, the trust is already seeing changes in communication and engagement across different wards and services.
Elton shared that the trust is actively developing training modules on implicit bias, with the aim of reaching every staff member across its services. This training is intended not as a one-off exercise but as part of a sustained culture change programme. Early feedback from staff has been encouraging, with more frontline workers recognising how unconscious bias can influence treatment decisions.
He also described the trust’s efforts to engage directly with service users and carers, ensuring that their lived experiences feed into decision-making. Listening events, surveys, and advisory panels are being used to capture diverse perspectives, with a particular focus on groups who historically felt excluded from consultation.
In addition, Elton emphasised the need for transparency and accountability. The trust will publish regular updates on its PCREF action plan, allowing communities and stakeholders to scrutinise progress. He acknowledged that this is just the beginning, but stressed that embedding anti-racism into healthcare systems requires openness, humility, and sustained commitment.
Participants raised questions about how these initiatives address specific groups, such as older Black carers and prisoners’ families, as well as concerns about public misconceptions of anti-racism work. Elton acknowledged these challenges and committed to following up with colleagues on gaps raised during the discussion.
Questions raised during NHS Trust’s presentation:
How will PCREF specifically address the needs of older Black adults who often feel invisible in services?
What is being done to support the mental health of prisoners (e.g. Albany and Parkhurst prisons) and their families within this anti-racist framework?
How will the trust prevent the public misconception that PCREF “excludes” white people?
What mechanisms are in place to ensure transparency and accountability in publishing progress updates?
How will the trust measure the long-term impact of cultural competence and implicit bias training?
Academic Research Contributions
The forum also heard from Shylet, a PhD researcher from University of Glasgow, who is focusing on learning disabilities. She presented her work on the lived experiences of Black African families caring for adults with learning disabilities, and invited participants to take part in interviews. Their contributions highlighted the importance of academic research in documenting and amplifying carers’ lived realities.
Another important theme was the financial challenges facing carers. The group discussed the complexity of benefits like Carer’s Allowance and how misinformation or fear of losing other entitlements often deters carers from claiming support. A carer expressed reluctance to claim due to concerns about how it might affect their relative’s benefits, while another highlighted the importance of valuing one’s own contribution and recognising caring work. There was frustration with bureaucratic systems that seem designed to exclude, particularly when layered with the additional barriers of language, culture, and discrimination.
Carers also highlighted the immense value of unpaid care, with estimates placing its worth at over £180 billion per year if it were to be paid for by the NHS. This figure underscored the urgent need for better recognition and support of carers’ contributions.
Strengthening Complaints and Accountability
There was a debate around how carers can raise complaints when faced with racism or poor treatment. Many participants expressed a lack of trust in formal systems like the CQC or Ombudsman, feeling that complaints disappear into bureaucracy without change. Suggestions included working with MPs, lobbying groups, or the media to ensure voices are heard.
Final Reflections
The August forum showed once again how necessary it is to hold these difficult conversations. Carers spoke bravely about racism and exclusion, professionals shared updates on anti-racist strategies, and researchers sought to bring lived experience into policy. Yet the message was clear: systemic change requires more than frameworks and research reports. It requires honesty, collaboration, and persistence.
As host, I was encouraged by the passion and determination in the room. The forum continues to grow as a national voice for ethnic minority carers, and our commitment to addressing racism head-on remains at the heart of this work.
Caring for someone with long-term mental illness is a profound act of love and responsibility, just as i cared for my mother, but it is also fraught with emotional complexities, especially within culturally tight-knit communities. The experience of unpaid carers, those who provide care without financial compensation, can be shaped by powerful cultural expectations, traditions, and social pressures. These factors often lead to hidden challenges such as guilt and shame, which can create barriers to seeking help and support.
This blog post which is a transcript of my video explores the intricate dynamics of care guilt and shame, drawing on my insights as facilitator of the National Ethnic Mental Health Care Forum.
While the focus often falls on ethnic minority carers, many of the themes discussed I feel are universal, affecting unpaid carers from all backgrounds. However By examining the cultural ideals, emotional burdens, and systemic challenges faced by carers, we can better understand how to support them and promote positive change in mental health care.
The Role of Culture in Shaping the Carer Experience
Family Duty and Community Honor
In many tight-knit communities, caring for a family member is seen as a moral duty and a source of honor. The expectation is clear: “We look after our own.” This deeply rooted tradition fosters strong family bonds and a sense of belonging. The carer’s role is often defined by values handed down through generations, reinforcing the idea that caring is not just a responsibility but an essential part of one’s identity.
However, these cultural ideals can also create significant challenges. The notion that the “perfect carer never complains or needs help” sets an unrealistic standard, making it difficult for carers to express their struggles or seek support. Weakness is discouraged, and the pressure to cope without showing strain is especially pronounced among men, who may feel compelled to “man up” and avoid displaying vulnerability.
Keeping Illness Within the Family
Another common theme is the tendency to keep issues of ill health, particularly mental illness, within the family or community. This approach is often seen as a way to protect the family’s reputation and maintain social cohesion. Religious and cultural beliefs may further reinforce the idea that problems should be addressed privately, sometimes through prayer or spiritual practices, rather than seeking external help.
While these traditions can provide comfort and a sense of solidarity, they can also lead to isolation and prevent carers from accessing the support they need. The fear of gossip, judgment, or being seen as failing in one’s duty can be overwhelming, especially when mental health is stigmatized or misunderstood within the community.
The Emotional Weight of Caring: Guilt and Shame
How Guilt Creeps In
Guilt is a pervasive emotion among carers, particularly when cultural norms dictate that they should be able to handle all challenges alone. The demands of caring often mean missing out on community events, family gatherings, or social obligations. Community leaders or members may notice these absences and interpret them as letting the community down, adding to the carer’s sense of guilt.
This guilt can manifest in several ways:
Resentment and Frustration: Carers may feel frustrated with themselves or the person they are caring for, leading to emotional strain and potential conflict.
Personal Guilt: The belief that needing a break or personal time is selfish can prevent carers from prioritizing their own well-being, even when burnout is imminent.
Fear of Judgment: In large families or communities, the expectation to manage alone can be overwhelming. Carers may worry about being judged or seen as failing in their role.
The Catch-22 of Self-Care
The need for personal time and self-care is undeniable, yet carers often feel trapped in a catch-22. Taking time for themselves is viewed as selfish, but neglecting their own needs can have detrimental effects on their mental and physical health. The pressure to uphold cultural ideals and avoid showing weakness makes it difficult to break this cycle.
In some communities, there may not even be a word for “carer”—it is simply assumed that family members will step in as needed. This lack of recognition further compounds the challenges, as carers struggle to articulate their needs or seek validation for their efforts.
The Impact of Shame and Stigma
Saving Face and Avoiding Help
Shame is closely linked to guilt, and both emotions can prevent carers from reaching out for help. The desire to “save face” is strong in many communities, where reputation and social standing are highly valued. Admitting to struggles or accepting support may be seen as a sign of weakness or failure, leading carers to reject offers of assistance from mental health services or outreach programs.
Internalized comments such as “this is your duty,” “you must put up a front,” or “we don’t put family in care” reinforce the belief that seeking help is unacceptable. The fear of gossip and misunderstanding is real, especially in communities where mental health is poorly understood or lacks a cultural vocabulary.
Religious and Cultural Barriers
Religious identity can also play a role in shaping attitudes toward mental health and caring. In some faith-based communities, there may be little space for open discussion about mental illness, and spiritual solutions may be favored over professional support. This can create additional barriers for carers, who may feel unsupported or misunderstood by both their community and the wider mental health system.
Systemic Challenges: Inequalities in Mental Health Care
The Patient Care Race Equality Framework (PCREF)
Recognizing the unique challenges faced by minority carers, NHS England has developed the Patient Care Race Equality Framework (PCREF). These set of policies aims to tackle inequalities in mental health care, particularly for ethnic minority groups. The framework emphasizes the importance of breaking down guilt and shame, promoting better outcomes for minority communities, and ensuring that carers’ voices are central to service design and decision-making.
However, systemic barriers persist. Minority carers may be reluctant to engage with mental health services due to fears of poor outcomes, discrimination, or further isolation. The double tragedy is that those who need support the most are often the least likely to receive it, as both community and systemic factors conspire to keep them from seeking help.
The Importance of Carers’ Voices
A key focus of the National Ethnic Mental Health Care Forum is to ensure that carers’ voices are heard and valued. Too often, the emphasis is placed solely on patients or those with lived experience, overlooking the vital role that families and carers play. Guilt and shame can stop carers from engaging with services, making it essential for mental health systems to recognize and address cultural barriers.
Breaking the Cycle: Towards Better Support and Outcomes
Engaging with Communities
To break the cycle of guilt and shame, it is crucial to engage directly with communities. This means attending religious and cultural gatherings, listening to minority carers and patients, and understanding the specific struggles they face. Education is key!! both for carers and for mental health professionals. Training staff to appreciate community values and avoid assumptions about disengaged carers can help foster trust and collaboration.
Creating Safe, Non-Judgmental Spaces
Safe spaces where carers feel invited and heard are essential. These settings should be non-judgmental and designed to encourage open dialogue. Just like my Ethnic carer forum. Co-production, where patients and carers are involved in designing and delivering services and can help ensure that support is tailored to the needs of diverse communities.
Promoting Positive Role Models
Just as I mentioned when I spoke at the North East London NHS PCREF event, I feel that Role models play a powerful role in challenging stigma and inspiring change. Mental health trusts and systems should promote positive examples of carers who have reached out for help and benefited from support. Sharing stories and experiences can help others see that seeking help is not a weakness, but a strength.
Self-Care as Strength
Promoting self-care as a strength, rather than a weakness, is vital. Carers need to recognize that it is okay to ask for help and take time for themselves. Engaging with community leaders and faith networks can help change attitudes and reduce stigma, using trusted voices to advocate for better understanding and support.
The Path Forward: Building Inclusive Mental Health Services
Co-Production and Service Design
Including carers in service design and decision-making is essential for building inclusive mental health services. By putting carers at the center of policy and practice, systems can better address the unique challenges they face and promote positive outcomes for all.
Education and Awareness
Ongoing education and awareness-raising are critical. Carers, communities, and professionals must work together to challenge stigma, promote understanding, and create environments where everyone feels supported.
The Power of Conversation
Ultimately, breaking the cycle of care guilt and shame requires open conversation and a willingness to learn from each other. By sharing experiences, listening to diverse voices, and fostering empathy, we can build stronger, more inclusive communities and mental health systems.
Conclusion
Care guilt and shame are complex, deeply rooted issues that affect unpaid carers across culturally tight-knit communities. The emotional weight of caring, compounded by cultural expectations and systemic barriers, can lead to isolation, burnout, and reluctance to seek help. Addressing these challenges requires a multifaceted approach engaging with communities, promoting positive role models, creating safe spaces, and ensuring carers’ voices are central to service design.
By working together to challenge stigma and promote understanding, we can support carers in their vital role and build mental health services that truly meet the needs of all. The journey is ongoing, but with awareness, education, and compassion, positive change is possible.
Caring for someone with mental illness? Check out our Ethnic carer forum. Dates shown below.
In July 2025, we held another meeting of the London Hospital Discharge Carers Forum, which brings together carer centres, NHS professionals, and lived experienced unpaid carers to explore how we can better support unpaid carers through the complex hospital discharge journey.
With key developments shared, questions raised, and future opportunities on the table, I’m sharing this blog to ensure everyone is informed.
A Focus on Hospital Discharge but With Carers at the Centre
The forum continues to highlight how vital carer centres are in delivering effective, compassionate discharge support. But alongside that recognition comes rising expectations: better digital access, stronger links with acute hospital teams, more formal involvement in care planning, and even new digital tools to manage carer identity and input.
Our role is growing and so is the need for collective visibility and coordinated action.
Key Themes from July’s Discussion
1. NHS England Hospital Discharge Toolkit & Care Contingency Plan As an involved carer, I delivered the NHS England update. The main message? The Care Contingency Plan (CCP) is becoming a key focus across the system. There are planning sessions due in September, and carer centres might be asked whether they can take on CCP delivery alongside existing carers assessments.
This triggered a crucial question: Will additional funding or contractual support be offered to carer centres taking on CCPs? because we can’t afford to quietly absorb additional workload without clarity on resources or expectations.
2. Digital Tools – NHS App & Carer Self-Identification With the growing digitisation of NHS services, there are plans to enable carers to self-identify via a digital route. The Universal Care Plan (UCP) is being built into the NHS app, but there’s confusion about whether a separate “carer app” is being developed too.
We’ve asked NHS England for clarification: Will carers be expected to use one NHS app to manage both contingency plans and carer registration, or will multiple systems be introduced? The answer will have implications for how we support carers with digital skills and accessibility.
3. The Bigger Picture – NHS 10-Year Plan and Local Adaptation We explored how the new 10-Year NHS Plan mentions carers primarily in the context of discharge, but offers little in terms of direct support or investment in carers themselves. Several carer centres raised concerns about being seen only as a means to improve discharge outcomes, rather than as partners in their own right.
That said, some centres are using the plan as an opportunity, working with local Integrated Care Boards (ICBs) to adapt and influence how the priorities are rolled out locally, including integration with neighbourhood health centres and walk-in clinics.
Peer Learning and Local Centre Updates
As always, our meeting included practical insights from carer centres embedded in local hospitals. Topics included:
Establishing hospital-based carer hubs and information desks.
Hosting monthly drop-ins for carers on specific wards (e.g. stroke and frailty).
Using ward rounds to identify and build relationships with staff willing to act as carer champions.
Overcoming challenges in gaining visibility, sustaining presence, or maintaining resource levels for in-hospital work.
Planning carers coffee mornings and pop-up stands to increase footfall and engagement.
For newer hospital-based carer workers, this space proved invaluable as a place to learn from colleagues, gather ideas, and avoid isolation.
Project Developments: What Centres Need to Know
Several borough-wide and London-wide initiatives are taking shape that could directly affect how carer centres operate in coming months:
A standard operating procedure for hospital discharge, currently being developed across South East London, is aiming to streamline how carers are engaged at discharge, with pilot sites starting this September.
In North Central London, work is underway on a web portal that makes it easier for hospital and emergency staff to refer carers into local support services including from the London Ambulance Service.
Carer Centres in several areas are starting or refreshing carer charters, carer passports, and surveys designed to codify carer involvement and measure experience across hospital pathways.
Carer support workers at one major South London hospital are re-establishing visibility post-staff transition. Efforts are underway to build new ward-level relationships and identify carer champions among staff. The centre is also exploring monthly carer drop-ins, asking the group for ideas on what works well and what doesn’t.
One East London carer centre has established a hospital-based hub on a specific ward floor, acting as a go-to space for carers needing support or information. They also run monthly drop-in sessions on elderly/frailty and stroke wards conditions where family involvement in discharge planning is often critical.
These projects are at different stages, but all point to one thing: carer centres are being asked to operate more visibly, more formally, and more digitally. It’s essential we shape this process and not just respond to it.
With NHS England’s CCP work moving fast and carer integration into digital systems ramping up, carer centres can no longer afford to remain on the sidelines.
We have a chance to be informed of policy changes early not after implementation.
Carer centres and hospitals can raise concerns about workload, training, and funding before it’s too late.
Newer or isolated workers benefit from collective knowledge-sharing and support.
This is not just another meeting, it’s one of the few cross-borough forums focused squarely on carer centres in the acute hospital context.
Looking Ahead: September Session
Our next meeting will be held usually the last week of September.
Let’s not let carers be an afterthought. Let’s make sure carer centres are seen, heard, and properly resourced.
Building Stronger Voices: A Powerful July Gathering of the National Ethnic Mental Health Carer Forum
On Friday, July 25th, the National Ethnic Mental Health Carer Forum held another online session, continuing our work in empowering diverse carers and influencing meaningful change across mental health services. With participation from community champions, NHS professionals, experienced unpaid minority carers. The discussion was on the Triangle of Care (ToC) and PCREF (Patient Carer Race Equality Framework) stakeholders.
This forum exists to elevate the voices of ethnically diverse carers, bringing their lived experiences to the forefront of service transformation. Whether it’s holding systems to account or shaping policy guidance, this space remains vital in creating inclusive, anti-racist care across the UK.
Highlights from July’s Forum
🔵 Debbie Hustings’ Presentation on Triangle of Care & PCREF Integration Debbie, a long-standing Triangle of Care Programme Lead and carer herself, gave an in-depth presentation on reviewing the Triangle of Care through a PCREF (Patient and Carer Race Equality Framework) lens. Her talk provided an honest look at institutional challenges and offered solutions for embedding racial equity into carer support standards. A key takeaway was how crucial lived experience is in driving real policy change not just warm words. She emphasized the importance of re-examining existing standards through a racial equity lens, stating that “beyond warm words,” carers need frameworks that are operational, measurable, and locally adaptable.
🟣 Powerful Feedback from Carers Contributors shared difficult yet necessary truths. Carers spoke about the lack of involvement in care planning, systemic racism, the need for meaningful co-production (not “faux-production”), and experiences of isolation when navigating majority environments. One carer reflected, “In 28 years of caring for my son, I have never been involved in his care planning.”
Several carers shared their painful, sometimes shocking, experiences navigating mental health services, especially in areas with limited diversity. One participant remarked, “Even after decades of caring, I’ve never been included in a care plan.” Others spoke of staff who misunderstood or dismissed cultural nuances, the misuse of confidentiality rules to exclude carers, and the silencing of Black and Asian voices. Concerns were also raised about immigration-related fears, lack of access for non-English speakers, and a troubling rise in racism in predominantly white areas. These reflections painted a vivid picture of systemic inequality but also made clear the power of collective advocacywhen carers come together, change begins.
These testimonies highlighted how far we still need to go.
🟡 Inclusive Language & Representation There was a passionate discussion around terminology whether to use “global majority” or “ethnically and racially diverse.” While some feared backlash from certain communities, the group leaned toward inclusivity and accountability over appeasement. This sensitivity around language underlines the forum’s thoughtful and intersectional approach.
🟢 The Work Ahead Debbie shared the next steps in developing Standard 2 of the Triangle of Care through the PCREF lens: staff training. The goal? Mandatory, culturally safe, anti-racist care awareness education co-produced with carers from diverse backgrounds. By April 2026, the guidance will be finalized, field-tested, and launched nationally.
A Forum of Global Carers, Local Action
This month’s session proved again that our forum is more than discussion as it’s a driving force for equity. Participants from Southampton, Lewisham, Pennine, Norfolk, Leicester, South West London, Kent & Medway and beyond all shared insights into their local efforts, including cultural awareness training, community storytelling projects, and carer-led involvement initiatives.
One key message? Change is possible when carers are part of the conversation—not as guests, but as co-leaders.
Want to Get Involved?
The forum is open to carers and professionals across the UK and beyond. We meet monthly online, and everyone is welcome to join, contribute, or simply listen.
For bookings or questions, contact me at info@caringmindblog.com 📱 Or download and scan the QR code in the flyer above
Together, minority mental health carers can shape a mental health system that sees, hears, and supports all carers—ethnically, culturally, and fully.
Next National MH carer forum in August 29th 10:30 am Matthew McKenzie Founder – Caring Mind Blog Facilitator – National Ethnic Mental Health Carer Forum
As the NHS looks to the future with its ambitious 10-Year Plan, one critical group continues to be overlooked cancer carers, although I am not forgetting Mental Health carers. These are the unpaid family members, friends, and loved ones who provide essential care and emotional support to people living with cancer.
While the plan addresses key priorities like digitalization and community-based health reform, it fails to fully recognize the vital role of caregivers in our healthcare ecosystem.
The blog is a transcript of my video, which you can watch below.
Reform Through Inclusion
The NHS 10-Year Plan aims to reshape health services by emphasizing digital tools, preventive care, and stronger local networks.
These initiatives are undoubtedly important. But without recognizing and integrating the contributions of cancer caregivers, the plan risks missing a vital component of patient care.
The Invisible Workforce
Caregivers are often the unsung heroes of cancer care. They manage appointments, administer medications, provide emotional support, and serve as advocates all while coping with their own mental and physical toll.
Challenges Faced by Cancer Carers:
Mental Health Impacts: The stress, anxiety, and emotional burden can be overwhelming.
Decision Fatigue: Carers are often thrust into complex medical decision-making without adequate support or guidance.
Lack of Recognition: Despite their contributions, caregivers are rarely acknowledged as part of the healthcare team.
A Call for Systemic Change
The inclusion of carers in healthcare reform isn’t just an ethical necessity it’s a strategic imperative. By empowering carers, we enhance patient outcomes, reduce strain on NHS services, and promote more holistic care.
Recommendations for Inclusion:
Training for Carers: Equip caregivers with tools to better navigate health systems and support patient needs.
Support Services: Invest in respite care, mental health support, and caregiver-specific community services.
Recognition in Policy: Classify caregivers as essential stakeholders in healthcare planning and delivery.
Co-Production: Designing Services With Carers
One of the most powerful messages from the discussion is the importance of co-production. That means actively involving carers in designing and shaping NHS services not just consulting them after the fact.
Co-Production Actions:
Involve Carers in Service Design: Make caregiver feedback a routine part of NHS planning.
Policy Advocacy: Push for legal and procedural reforms that recognize the role of carers from day one.
The Road Ahead
Cancer caregivers are not just a support system they are key partners in the healthcare journey. If the NHS truly seeks to build a more inclusive, responsive, and sustainable health system, caregivers must be central to its 10-Year Plan.
Let’s stop treating caregivers as an afterthought. Let’s make them co-creators of the future of care.
Support Sites for Cancer Carers
1. Carers UK
Provides advice, online forums, factsheets, and rights information for unpaid carers across the UK. https://www.carersuk.org
2. Carers Trust
Supports a network of local carer organisations across the UK. Offers practical help, grants, and local service finders. https://www.carers.org
A network of cancer support centres offering free emotional, psychological, and practical support to anyone affected by cancer—including carers. https://www.maggies.org
The Digital Revolution in the NHS: Why Unpaid Carers Must Be at the Heart of Change
From Matthew McKenzie – Carer activist
Below is a transcript of my video
The National Health Service (NHS) in the UK is undergoing a profound transformation, one that is being described as a technological revolution. With the launch of the NHS 10-year plan, the focus is shifting towards digitization, artificial intelligence, and centralized health information. While these changes promise to streamline care and improve outcomes, there is a critical group whose needs and voices must not be overlooked: unpaid carers.
Unpaid carers which I feel are often family members or close friends often play a vital role in supporting those with long-term health conditions, including mental illness and cancer. Their contributions are immense, yet they are frequently left on the sidelines when it comes to digital innovation in healthcare. This article explores why unpaid carers must be central to the NHS’s digital future, the challenges they face, and the steps needed to ensure they are empowered, included, and supported.
Understanding the Role of Unpaid Carers
The Backbone of Community Care
Unpaid carers are the unsung heroes of the healthcare system. They manage medications, coordinate appointments, provide emotional support, and often handle emergencies. Their work extends far beyond what is visible to the public or even to healthcare professionals. When patients leave hospitals or clinics, it is usually unpaid carers who take on the responsibility of ongoing care at home.
The Double Burden
Caring for someone with long-term illness can be demanding, both physically and emotionally. Many carers juggle multiple roles, often putting their own needs last. The demands of caring can make it difficult to keep up with new technologies or to seek out digital tools that could make their role easier. This invisibility and self-sacrifice can lead to carers being left behind as the NHS moves forward with its digital agenda.
The NHS 10-Year Plan and the Digital Revolution
What’s Changing in the NHS?
The NHS 10-year plan marks a significant shift towards digital healthcare. Key elements include:
Expansion of the NHS App: The NHS app is being developed to allow for easier booking of appointments, prescription management, and access to centralized health information.
Integration of Artificial Intelligence: AI will be used to process the growing volume of health data, supporting healthcare workers in making faster, smarter decisions.
Digital Health Records: Patient records will be digitized and made accessible across services, ensuring continuity of care and reducing the need for patients and carers to repeat their stories to every professional.
The Promise of Technology
Digitization offers many potential benefits for carers. With the right support, technology can:
Reduce waiting times and streamline appointment bookings.
Provide real-time access to health information and test results.
Eliminate the need to repeatedly explain a patient’s history to different professionals.
Help carers stay organized and informed, improving the quality of care they provide.
The Risks of Exclusion
Barriers to Digital Inclusion
Despite the promise of technology, there are significant barriers that can prevent unpaid carers from benefiting:
Digital Literacy: Not all carers are comfortable with technology, and some may lack the skills or confidence to use digital tools effectively.
Access to Devices: Smartphones and other devices capable of running advanced health apps can be expensive, putting them out of reach for many carers who may already be financially stretched.
Design Oversights: Many digital health tools are not designed with carers in mind, focusing instead on patients or healthcare professionals.
Time Constraints: The demands of caring leave little time for carers to research or learn about new digital resources.
The Danger of Being Left Behind
If unpaid carers are not included in the digital transformation, there is a real risk that they will be excluded from important aspects of care planning and decision-making. This could lead to poorer outcomes for both carers and those they support, and ultimately place greater strain on the NHS as a whole.
Making Digital Healthcare Work for Carers
The Need for Training and Support
To ensure carers can benefit from digital innovations, targeted training and support are essential. This could include:
Workshops and Training Sessions: Carer centers and NHS trusts can offer training on how to use digital tools, such as the NHS app.
Recovery Colleges: In the mental health sector, recovery colleges can help upskill carers in using technology to support their loved ones.
Accessible Design: Digital tools should be designed with carers in mind, ensuring they are intuitive and easy to use.
Inclusion in Care Records and Decision-Making
Carers must be recognized and included in digital care records, with appropriate safeguards for confidentiality. This would allow them to:
Be easily identified and referred to support services.
Access relevant health information to better support the person they care for.
Participate in care planning and decision-making processes.
Co-Designing Digital Tools
Carers should have a say in the design and rollout of digital health tools. Their lived experience provides invaluable insights into what works and what doesn’t. Involving carers from the outset can ensure that digital innovations truly meet their needs.
Practical Steps for Carers
Engaging with the NHS App
Carers should be encouraged to explore the NHS app and see how it can support them in their role. This might include:
Booking appointments for the person they care for.
Managing prescriptions and medication reminders.
Accessing up-to-date health information and test results.
Seeking Support and Sharing Feedback
Carers should not hesitate to ask their GP, pharmacist, or local carer organizations about digital options and support. Providing feedback on what works and what doesn’t is crucial for improving digital services.
Building a Community of Support
Carer groups and forums can play a vital role in sharing experiences, tips, and support related to digital healthcare. By working together, carers can help each other navigate the digital landscape and advocate for their needs.
The NHS’s Responsibility: Including Carers in the Digital Future
Recognizing Carers as Partners, Not Visitors
Unpaid carers are not just visitors in the healthcare system as they are integral to its functioning. Their inclusion in the digital revolution is not optional; it is essential for the sustainability of the NHS.
Reducing Pressure on the System
By supporting carers with digital tools and resources, the NHS can help them provide better care, reducing the pressure on hospitals and social care services. Excluding carers would only shift the burden back onto the NHS, undermining the goals of the 10-year plan.
Building Digital Solutions with People at the Center
Technology alone cannot solve the challenges of healthcare. Digital solutions must be built with the people who use them patients, carers, and professionals at the center. This means ongoing dialogue, co-design, and a commitment to accessibility and inclusion.
Looking Ahead: Embracing Change Together
The Constant of Change
Technology is always evolving, bringing both challenges and opportunities. For carers, staying informed and engaged with digital developments is key to ensuring they are not left behind.
Shaping the Future
Carers have a unique opportunity to shape the future of healthcare. By participating in the digital revolution, sharing their experiences, and advocating for their needs, they can help create a system that works for everyone.
A Call to Action
Whether you are a carer, a healthcare professional, or someone interested in the future of the NHS, now is the time to act. Embrace digital tools, seek out training and support, and make your voice heard. Together, we can ensure that the NHS’s digital future is inclusive, effective, and centered on the needs of those who care.
Conclusion
The NHS’s digital revolution holds great promise, but its success depends on the inclusion of unpaid carers. By recognizing their vital role, addressing barriers to digital access, and involving them in the design and implementation of new tools, we can build a healthcare system that is truly fit for the future. Unpaid carers are not just supporting the system they are shaping it. Their voices, experiences, and needs must be at the heart of the NHS’s digital journey.
The session opened with updates and heartfelt check-ins. One of our carer members, shared a deeply personal and challenging situation regarding her loved ones declining mental and physical health. Despite strained family dynamics and the emotional burden of caring, a carer is courageously advocating for her loved one and seeking support through nursing services and assessments.
Peer Support: Insights from Experience
Long-time members offered valuable perspectives from their own journeys. A carer shared their struggle supporting individuals, which showed a stark reminder of the emotional and logistical toll caring can take. Another carer encouraged fellow carers to prioritise their own well-being, even in small ways a cup of tea, a short walk, a moment to breathe.
About the Forum: The Lewisham, Lambeth & Southwark Carers Forum is a collaborative online space that brings together unpaid carers, carer leads, mental health professionals, and support organizations to share experiences, raise concerns, and influence change. Focused primarily on mental health caregiving, the forum serves as a platform for peer support, policy updates, training insights, and service development. Led by carer advocate Matthew McKenzie, the group fosters empowerment through regular discussions, creative expression, and co-produced solutions, ensuring carers’ voices are heard across local systems and beyond.
Carers Week Collaboration Discussion
The meeting began with introductions from Matthew McKenzie, who leads a merged online carers group, and other participants including Yvonne, a carers navigator at Southwark Carers, and Margaret, a carer representative with the Royal College of Psychiatrists. The group discussed Carers Week activities and their various roles in supporting carers across different organizations. Karen Hooper, connected with the Lambeth Living Well Collaborative, while Lee Roach, the carers lead for South London & Maudsley in Lambeth, shared his involvement with the Trustwide Family and Carers Committee.
The Power of Poetry and Storytelling in the Lives of Carers
Caring for a loved one with mental health challenges or chronic illness is a journey marked by both hardship and hope. Too often, the voices of carers those who provide unpaid, tireless support are overlooked in the broader conversation about health and wellbeing. Yet, as this moving gathering of carers and poets reveals, storytelling and poetry can be transformative tools for connection, healing, and advocacy. So it was an honour to host our first poetry event at Cygnet Churchill for the 13th of June during Carers Week 2025
This Blog explores the themes, experiences, and creative expressions shared by carers, drawing from a vibrant community event centered on poetry, storytelling, and the lived realities of those who care. Through their words, we gain insight into the emotional landscape of caring, the challenges faced, and the resilience that emerges when stories are shared.
To watch the performance, please view the video below.
Giving Carers a Voice: The Motivation Behind the Book
The host of the event was myself (Matthew McKenzie), as a prolific author and advocate, where I have dedicated my eighth book to amplifying the voices of mental health carers. For me, books are more than just a means of communication they are a way to reach people who might otherwise remain unheard.
A Caring Mind 