Tag Archives: unpaid carers

Lewisham, Southwark & Lambeth carer forum update August 2025

The meeting facilitated by Matthew McKenzie began with introductions from participants and updates on various carer support initiatives, including forum mergers and NHS plan changes.

Local council strategies and initiatives were discussed across different boroughs, with particular focus on Lambeth and Southwark’s carer support plans and the development of a carer’s forum in Lewisham. The group explored challenges faced by carers, including access to primary care and the need for better coordination, while discussing recent conferences and upcoming events aimed at supporting and advocating for carers’ rights.

Lewisham Carers Strategy and Service Updates

Lewisham is currently refreshing its Carers Strategy to strengthen support for unpaid carers and improve access to local services. The focus is on ensuring carers are included in decision-making through co-production and collaboration with the council, health providers, and community organisations. A major priority is improving well-being services, providing better information, and ensuring carers know their rights under the Carers Leave Act.

As part of wider NHS reforms, Lewisham is moving towards a neighbourhood-based care model designed to bring services closer to local communities. While this aims to make access more seamless, carers raised concerns about inconsistent GP access, gaps in communication, and challenges navigating between boroughs when supporting loved ones. The forum highlighted the importance of better coordination between primary care, hospital discharge planning, and mental health services to ensure carers are recognised and supported.

Lambeth Carers Strategy Refresh

Lambeth is currently refreshing its Carers Strategy with the aim of improving services, increasing visibility, and ensuring carers have a stronger voice in decision-making. The updated strategy focuses on key priorities such as well-being, access to assessments, respite options, and workforce training for those supporting unpaid carers.

There was a particular focus on improving support for mental health carers in Lambeth. The Carers Hub Lambeth team continues to facilitate peer support groups and collaborates closely with the South London and Maudsley NHS Foundation Trust to ensure carers are recognised as partners in care planning. Initiatives like Triangle of Care are gaining momentum, emphasising better communication between professionals and families while creating pathways for carers to get involved in shaping local mental health services.

Carers Hub Lambeth also celebrated the growing range of community-based activities available for carers and families in Lambeth. Over the summer, there have been several events designed to support young carers, including trips, tours, and group workshops aimed at helping them connect with others and access emotional support. These initiatives are part of Lambeth’s broader goal to make sure younger carers, who are often overlooked, receive the help they need both at home and within education.

One of the key upcoming events for Lambeth carers is the Lambeth Carers Strategy Event taking place on 25th September 2025 at 336 Brixton Road. The session will bring together carers, professionals, and decision-makers to review plans, share ideas, and set priorities for the future. Carers are strongly encouraged to attend to ensure their voices are heard and to take part in shaping the borough’s action plans moving forward.

Southwark Council Carers Support and Strategy Group

Matthew fed back on how Southwark Council continues to strengthen its approach to supporting unpaid carers, with a growing emphasis on improving access to information, assessments, and respite services.

The Unpaid Carers Strategy Refresh is a project running from August 2025 to April 2026, led by Southwark Council in collaboration with Adult Social Care, the NHS, local voluntary groups, and unpaid carers themselves. The plan focuses on improving support for carers by updating evidence on local needs, strengthening engagement with seldom-heard groups, and mapping gaps in current services.

Key priorities include better access to respite care, enhanced referral pathways, stronger partnerships with health services, and improved inclusion of young carers, carers with disabilities, and LGBTQ+ carers. The initial phase, from August to October, involves reviewing existing strategies, mapping current services, gathering insights through focus groups and surveys, and benchmarking against national policies and neighbouring boroughs.

The forum highlighted the importance of co-production, ensuring that carers are actively involved in shaping local strategies and service priorities.

Update on Key Themes from the final NHS England Carers Conference

Matthew highlighted that the 2025 NHS England carers conference placed a strong emphasis on recognising unpaid carers as essential partners in delivering effective healthcare. The NHS stressed its commitment to involving carers in shaping services and policies, ensuring their voices are reflected at every stage of decision-making. There was a clear acknowledgement that without unpaid carers, many health and social care systems would face significant pressure.

You can watch the conference below.

A major focus was on the NHS’s shift towards neighbourhood-based care models designed to bring services closer to communities. Matthew explained that this change aims to improve coordination between GPs, hospitals, and mental health services, but he also highlighted concerns raised about fragmented communication and the risk of carers being left out of local planning. Carers at the conference called for better access to information and more joined-up pathways across boroughs.

The conference also featured interactive workshops and discussion groups focused on co-production, digital innovations, and addressing inequalities among carers. Specific sessions explored improving support for young carers, carers from minority backgrounds, and those supporting loved ones with mental health needs. The event closed with a call to action for stronger collaboration between carers, NHS teams, local authorities, and community organisations. Attendees were encouraged to get involved in upcoming forums and engagement opportunities to help shape future services and ensure carers’ voices are at the heart of decision-making.

Matthew shared updates on national policy developments discussed at the conference, including the Carers Leave Act and commitments to expanding access to respite, assessments, and flexible working rights. There was also a discussion about new digital tools and support platforms designed to make it easier for carers to connect with professionals and access resources. However, many attendees expressed concerns that these initiatives need proper funding and training to work effectively in practice.

Why Unpaid Carers need to be aware of learning Digital Skills

By Matthew McKenzie

The Urgent Need for Digital Skills Among Unpaid Carers

Unpaid carers who provide support to family members, friends, or neighbors with long-term health conditions are the backbone of many communities. Their work is often invisible, yet it is essential for the well-being of countless individuals. As healthcare systems rapidly digitize, the landscape of caregiving is undergoing a profound transformation. Unpaid carers now face the challenge of adapting to new technologies, digital platforms, and online resources that are becoming integral to the delivery of care.

This blog explores why technical and digital skills are no longer just optional for unpaid carers. The blog is also a transcript of matthew’s video below.

Drawing on insights from matthew’s experience as an unpaid carer & IT professional and advocate for carers, we delve into the practical reasons behind this shift, the opportunities and challenges it presents, and the future trends that will shape caregiving in the years to come.

The Changing Face of Caregiving

Digitization in Healthcare

Healthcare is moving online at an unprecedented pace. Electronic health records, telehealth platforms, wearable health devices, and digital prescriptions are becoming the norm. The reasons are clear: digitization streamlines processes, reduces costs, and enables real-time access to critical health data. For unpaid carers, this means that many aspects of their role now require interaction with digital tools.

The Role of Carer Centers

Local carer centers have traditionally been the first point of contact for those seeking support. As these centers will play a crucial role in helping carers acquire the skills needed to navigate the new landscape. Online training, virtual support groups, and digital resource libraries are just some of the ways carer centers are evolving.

Overcoming Barriers to Digital Inclusion

Challenges Faced by Carers

Not all carers are comfortable with digital environments. Some may lack the means to access technology, while others face disabilities that make using digital platforms difficult. For example, visual impairments can pose significant challenges. It’s important for carer centers and support organizations to recognize these barriers and provide alternative solutions where possible.

The NHS 10-Year Plan

Digitization is at the heart of the NHS’s long-term strategy. Unfortunately, unpaid Carers who fail to meet the demand for digital skills may find themselves excluded from essential services and support. Embracing technology is not just about keeping up, it’s about empowering carers to meet the needs of those they support with confidence and efficiency.

Conclusion

The digitization of healthcare is transforming the role of unpaid carers. Technical and digital skills are now essential for accessing resources, coordinating care, and advocating for loved ones. While the transition may be challenging, it offers opportunities for greater efficiency, independence, and empowerment.

If you are an unpaid carer, now is the time to invest in your digital skills. Seek out training, connect with support networks, and take advantage of the tools available. Your role is vital, and with technology on your side, you can continue to make a difference in the lives of those you care for.

Understanding Care Guilt and Shame in Culturally Tight-Knit Communities

By Matthew McKenzie

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.

World Lung Cancer Day 2025: Honoring Unpaid Carers & Fostering Compassion

By Matthew McKenzie

On this World Lung Cancer Day (1st of August), we spotlight not only the impact of lung cancer itself, but also theose behind the scenes the unpaid family members, friends, and carers who provide unwavering love, support, and strength.

In this 8-minute video, hosted by myself from A Caring Mind, I explore:

  • The profound emotional and physical toll of caring for someone with cancer
  • The critical need for early detection, expanded research funding, and global health equity
  • The indispensable role of families and unpaid carers—whose contributions often go unrecognized

I also introduce major organizations leading the lung cancer fight:

  • European Respiratory Society (ERS) – promoting lung health through education, early diagnosis, policy advocacy, and improved treatment pathways
  • Forum of International Respiratory Societies (FIRS) – uniting global respiratory health organizations to advocate for prevention, clean air, and equitable access to care
  • Lung Cancer Foundation of America (LCFA) – funding innovative lung cancer research and amplifying the voices of patients and survivors to raise awareness and reduce stigma
  • Lung Cancer Research Foundation (LCRF) – accelerating research, supporting affected individuals, and organizing global awareness initiatives like World Lung Cancer Day

In the video I remind that behind the tragic statistic of over 1.6 million annual deaths worldwide, are stories of resilience and compassion: nights spent advocating in hospitals, hands held during chemotherapy, and hope sustained in the darkest moments.

What You Can Do:

  • Share the video to raise awareness
  • Support carers through mental health resources and recognition
  • Advocate for policies that include carers in healthcare support systems
  • Approach lung cancer conversations with empathy—not stigma

Today, we honor not just the patients, but those who stand beside them—quietly, persistently, lovingly.

Lewisham, Southwark & Lambeth Mental Health carer forum – July 2025 update

By Matthew McKenzie

LLS Carers Forum – July Update: Voices, Concerns & Community Strength

Welcome to the July update for the Lewisham, Lambeth, and Southwark Mental Health Carers Forum. This month’s meeting, chaired by Matthew McKenzie, provided space for powerful updates, critical reflections, and a sobering insight into national developments affecting carer support.

🔸 Growing the Carers Voice

Our forum continues to evolve, bringing together unpaid carers from across boroughs. It remains a space for empowerment, where carers can speak openly, challenge services, and influence support structures. Several attendees introduced themselves and reflected on their caring roles, often crossing borough boundaries and facing ongoing questions about their own place in the system.

🔸 Spotlight: Healthwatch Update

One of the major concerns raised was the planned abolition of Healthwatch England and its local branches, which is a development that has deeply unsettled many in our community.

Anna from Healthwatch Lambeth joined us (on her day off—thank you, Anne!) to explain what’s happening:

  • Healthwatch functions—listening to service users, signposting, and enter-and-view visits, which are set to be absorbed by local authorities and ICBs.
  • As a statutory body, Healthwatch cannot be dissolved without legislation, so operations continue for now.
  • Carers voiced serious concerns over the loss of Healthwatch’s independence and trust, especially as a safe channel for feedback.

Anne reminded us: Healthwatch is still active and listening. A final report on black men’s experiences in Lambeth mental health services is due by mid-August.

🔸 Key Questions Raised

  • How will services preserve independent feedback mechanisms once Healthwatch is gone?
  • What accountability structures will replace them?
  • What are the implications of the broader wave of health service body consolidations?

🔸 Updates from the Ground

We also heard from other carer members:

  • A carer from Lewisham shared feedback she submitted to the Lewisham Unpaid Carers Forum regarding carer engagement, with little response so far unfortunately highlighting an all-too-common issue.
  • Other Carers reflected on Lambeth’s carer engagement structures, noting some decline in carer-led decision-making over the years.
  • Another Carer emphasized the importance of real, consistent carer champions within NHS teams particularly in mental health crisis services.

🔸 Carers Forum Reflections

Matthew provided a helpful comparison between Lewisham and Lambeth carer engagement models. While Lewisham has a formal Unpaid Carers Forum, its independence is limited. Lambeth’s model leans more on the collaborative network and carer support groups. Both boroughs face challenges in consistency, clarity, and co-production.

A concern raised repeatedly: carer champions are often named but rarely visible and sometimes, not even known by their own teams.

📅 Next Forum: August 25 or 26

Due to the bank holiday, the next forum will likely be held on August 26. We’ll aim to have a guest speaker and will explore new ways for carers to hold services to account especially in light of the potential Healthwatch closure.

If you’d like to contribute to future discussions or attend the next forum, please reach out. This is your space.

📣 Let’s continue to speak up, stand together, and push for better mental health support for all carers.

Hospital Carers Discharge Meeting Update July 2025

Posted: July 2025
By: Matthew McKenzie

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.

Why Cancer Carers Must also be at the Heart of the NHS 10-Year Plan

By Matthew McKenzie

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

3. Macmillan Cancer Support

Offers emotional, practical, and financial support for people affected by cancer—including dedicated resources for carers.
https://www.macmillan.org.uk/information-and-support/supporting-someone-with-cancer

4. NHS – Cancer Care and Support

Official NHS guidance on cancer, treatments, living with cancer, and how carers can support loved ones.
https://www.nhs.uk/conditions/cancer/

5. Maggie’s Centres

A network of cancer support centres offering free emotional, psychological, and practical support to anyone affected by cancer—including carers.
https://www.maggies.org

6. Marie Curie – Caring for Someone with Cancer

Offers support to those caring for someone at the end of life or with a terminal cancer diagnosis, including bereavement help.
https://www.mariecurie.org.uk/help/support/caring

Alcohol Addiction, Work, and Hidden Carers: Start the Conversation

Understanding Alcohol Awareness Week 2025

Alcohol Awareness Week is an annual event dedicated to raising awareness about the impact of alcohol on individuals, families, workplaces, and society at large. In 2025, the event will run from the 7th to the 13th of July, spearheaded by the charity Alcohol Change UK.

To watch the video version of my blog, see below. The blog is a transcript of the video.

This year’s theme, “Alcohol and Work,” brings a crucial focus to how alcohol consumption affects not just personal health, but also professional performance, workplace relationships, and overall well-being.

The Broader Impact of Alcohol

Alcohol is often viewed through the lens of personal choice and individual health. However, its effects ripple far beyond the person consuming it. The consequences of harmful drinking habits can be seen in diminished work performance, strained relationships, compromised safety, and a decline in mental health. Behind every statistic lies a human story on one that often includes addiction, isolation, and the silent struggles of those who care for someone affected by alcohol dependency.

Alcohol and the Workplace: A Hidden Challenge

The Unseen Effects on Performance and Safety

Alcohol’s impact on the workplace is multifaceted. It can lead to decreased productivity, increased absenteeism, and even safety risks, especially in roles that require high levels of attention and responsibility. The pressure to perform, long working hours, and high-stress environments can sometimes drive individuals to use alcohol as a coping mechanism. This, in turn, can create a cycle where alcohol use further impairs work performance, leading to more stress and potentially more drinking.

The Human Stories Behind the Statistics

It’s easy to overlook the personal narratives behind the numbers. In the UK, approximately one in four people drink in ways that could be harmful to their health. For some, this escalates into dependency, isolation, and crisis. The journey into alcohol dependency is rarely straightforward or visible. It can be masked by a smile, hidden behind long hours at the office, or dismissed with a casual “I’m fine.” The reality is often much more complex and painful.

The Ripple Effect: Unpaid Carers and Their Silent Struggles

The Burden on Unpaid Carers

One of the most overlooked aspects of alcohol-related harm is its impact on unpaid carers. These are the partners, parents, siblings, friends, and even colleagues who quietly support someone struggling with alcohol dependency. Unpaid carers often juggle their own work and family responsibilities while shouldering the emotional and practical burdens of caring for someone else.

The challenges faced by unpaid carers are immense. Many carry this burden alone, with little support or recognition. They may sacrifice sleep, income, and their own mental health in the process. The emotional strain can be overwhelming, and the lack of support can lead to feelings of isolation and helplessness.

The Need for Recognition and Support

It’s time to shine a light on the pressure, pain, and silence that unpaid carers endure. Their contributions are invaluable, yet they often go unnoticed. Recognizing their struggles and providing them with the support they need is essential, not just for their well-being, but for the well-being of those they care for.

Breaking the Silence: The Power of Conversation

Starting the Conversation

One of the most effective ways to address alcohol-related harm is to start a conversation. Breaking the stigma surrounding alcohol dependency begins with open, honest dialogue. If you’re concerned about someone’s drinking habits, reaching out and expressing your concern can be a powerful first step. Sometimes, simply asking, “How are you doing?” can make a world of difference.

Sharing Resources and Support

In addition to conversation, sharing resources is crucial. Organizations like Alcohol Change UK provide valuable information, helplines, and support services for those affected by alcohol dependency. Sharing these resources, whether it’s a helpful video, a website, or a helpline number which can offer much-needed support to someone in need.

Supporting Unpaid Carers

For those who focus on supporting unpaid carers, it’s important to acknowledge their unique challenges. Offering a listening ear, practical assistance, or simply checking in can provide much-needed relief. Carers often feel invisible, so small gestures of support can have a significant impact.

Raising Awareness: Everyone Has a Role

Online, at Work, and in the Community

Raising awareness about the harms of alcohol and the support available is a collective responsibility. Whether it’s through online campaigns, workplace initiatives, or community events, every effort counts. The more we talk about these issues, the less people will suffer in silence.

Building a Culture of Care

Ultimately, the goal is to foster a culture of care, one where no one has to face addiction or the challenges of caring for someone with addiction alone. By working together, we can reduce the harm caused by alcohol, support one another, and create a more compassionate society.

Practical Steps for Getting Involved

1. Educate Yourself and Others

Understanding the facts about alcohol and its effects is the first step. Visit reputable sources like Alcohol Change UK to learn more about the risks associated with alcohol consumption, the signs of dependency, and the support available.

2. Start Conversations

Don’t be afraid to talk about alcohol and its impact. Whether it’s with friends, family, or colleagues, open dialogue can help break down stigma and encourage those struggling to seek help.

3. Share Resources

Distribute information about support services, helplines, and educational materials. The more accessible these resources are, the more likely people are to use them.

4. Support Unpaid Carers

If you know someone who is caring for a person with alcohol dependency, offer your support. This could be as simple as checking in regularly, offering to help with practical tasks, or encouraging them to seek support for themselves.

5. Advocate for Change

Encourage your workplace or community to participate in Alcohol Awareness Week. Organize events, share information, and promote policies that support those affected by alcohol-related harm.

The Importance of Compassion and Understanding

Recognizing the Human Element

Behind every case of alcohol dependency is a person with a unique story. Compassion and understanding are essential in supporting those affected. Avoid judgment and focus on offering support and encouragement.

The Role of Empathy in Recovery

Empathy can be a powerful tool in helping someone change their relationship with alcohol. Listening without judgment, offering encouragement, and being patient can make a significant difference in someone’s journey to recovery.

The Role of Workplaces in Addressing Alcohol-Related Harm

Creating Supportive Environments

Workplaces have a unique opportunity to support employees affected by alcohol-related harm. This can include providing access to counseling services, promoting work-life balance, and fostering a culture where employees feel comfortable seeking help.

Implementing Policies and Training

Employers can implement policies that address alcohol use in the workplace, provide training for managers on how to support employees, and ensure that support services are readily available.

Encouraging Peer Support

Peer support programs can be effective in helping employees feel less isolated and more supported. Encouraging open dialogue and creating safe spaces for discussion can help break down barriers to seeking help.

The Ongoing Challenge: Reducing Stigma

video from Alcohol Change UK

Why Stigma Persists

Stigma remains one of the biggest barriers to seeking help for alcohol dependency. Many people fear judgment or discrimination, which can prevent them from reaching out for support.

How to Combat Stigma

Education and awareness are key to reducing stigma. By sharing stories, promoting understanding, and challenging misconceptions, we can create a more supportive environment for those affected by alcohol-related harm.

Looking Ahead: Building a Supportive Future

The Importance of Continued Awareness

Alcohol Awareness Week is an important opportunity to shine a light on the challenges associated with alcohol use. However, the work doesn’t end when the week is over. Continued awareness, education, and support are essential in creating lasting change.

Working Together for Change

Change is possible when we work together. By supporting one another, raising awareness, and advocating for better support systems, we can reduce the harm caused by alcohol and build a more compassionate society.

Resources for Support

  • Alcohol Change UK: alcoholchange.org.uk – A leading charity providing information, support, and resources for those affected by alcohol-related harm.
  • Helplines and Support Services: Many organizations offer confidential helplines and support services for individuals and carers.
  • Workplace Support: Check with your employer about available support services, employee assistance programs, and mental health resources.

Conclusion: A Call to Action

Alcohol Awareness Week 2025 is a vital opportunity to reflect on the impact of alcohol in our lives, workplaces, and communities. By starting conversations, sharing resources, supporting unpaid carers, and raising awareness, we can make a real difference. Let’s work together to understand the harm that alcohol can cause, support one another, and build a culture of care, because no one should have to face addiction or care for someone with addiction alone.

Let’s make this Alcohol Awareness Week a turning point for greater understanding, compassion, and support.

NHS Digital Revolution: Empowering Unpaid Carers

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.

Institutional Distrust Why Many Ethnic Carers Avoid Formal Services

Understanding the Hidden Struggles of Ethnic Minority Carers
Caring for a loved one with mental illness can come with challenges, but for many ethnic minority carers, the journey is made more challenging by cultural stigma, language barriers, and a deep-rooted mistrust of formal health systems.

These carers often carry immense responsibility behind closed doors, with little recognition or support. Despite their dedication, many avoid reaching out to mental health services—not because they don’t care, but because past experiences have taught them to be cautious, even fearful.

What Is Institutional Distrust and Why Does It Matter?
Institutional distrust refers to the lack of confidence in systems like healthcare, social care, or government services. For ethnic minority carers, this distrust is often grounded in real experiences of discrimination, cultural insensitivity, or the fear of losing control over a loved one’s care.

When services fail to understand or respect a carer’s background, the result is silence and isolation leaving carers to cope alone, without the help they may desperately need.

A Short Video Giving Voice to Unheard Stories
To shed light on this important issue, I’ve created a short video presentation:
“Institutional Distrust: Why Many Ethnic Carers Avoid Formal Services”


This video draws on the voices and lived experiences of unpaid carers, especially those from ethnic minority backgrounds. It explores the emotional weight they carry, the cultural barriers they navigate, and the urgent need for services to become more inclusive, respectful, and culturally aware.

Why Sharing These Stories Matters
If we truly want to support carers from all backgrounds, we must first listen and really listen to what they’re telling us. By naming institutional distrust and understanding its roots, we can begin to rebuild trust and create spaces where carers feel safe to seek help.

Please watch and share the video, and let’s continue the conversation about what real support looks like for ethnic minority carers in mental health.