Tag Archives: carers voice

East Sussex Carers Voices – Celebrating Carers Week 2026

East Dean Village Hall – 11 June 2026

Written by Matthew McKenzie, Speaker, Carer, Campaigner and Poet

As part of Carers Week 2026, I had the privilege of travelling to East Dean in East Sussex to speak at the East Sussex Carers Voices – Celebrating Carers Week Event, organised by Care for the Carers. The event brought together unpaid carers, carers’ organisations, NHS representatives, local authority leaders, health professionals, community groups and carers from across East Sussex to discuss the realities of caring and identify ways to improve support for unpaid carers.

The event was hosted by Dr Neil Churchill, Chair of Care for the Carers, who guided the day’s discussions and emphasised the vital role carers play in society. Throughout the day, carers shared their personal stories, experiences and recommendations directly with decision-makers and service providers.

This blog post provides an overview of the key themes, speakers and discussions for those who were unable to attend.

Opening Remarks – Dr Neil Churchill

Dr Neil Churchill opened the event by welcoming attendees and recognising the significant contribution unpaid carers make to families, communities and public services.

He highlighted several key challenges currently facing carers:

• Rising financial pressures and cost-of-living concerns.
• The growing number of carers leaving employment due to caring responsibilities.
• Increased risks of poor physical and mental health among carers.
• Social isolation and loneliness experienced by many carers.
• Growing concerns around carer burnout.

Dr Churchill stressed that the country depends heavily on unpaid carers and that health and social care systems would struggle to function without them. He also spoke about the importance of moving towards a model where carers are treated as equal partners in care rather than simply being expected to cope alone.

A key message from his introduction was that carers should not be left to navigate fragmented services by themselves. Instead, health, social care and voluntary sector organisations must work together more effectively to recognise, support and value carers.

Carer Stories and Lived Experience

One of the most powerful aspects of the event was hearing directly from carers themselves.

Miles Bing – Caring Through Dementia

The first speaker was Miles Bing, author of “Deadheaded: An Alzheimer’s Memoir by Mother and Son”.

Miles shared his family’s experience of supporting both of his parents through Alzheimer’s disease. His presentation explored the emotional impact of caring at a distance, the guilt often experienced by family members who live far away, and the difficulties of coordinating support across multiple services.

He spoke about:

• The long-term impact of dementia on families.
• The challenges of accessing services in rural areas.
• The lack of coordination between health and social care systems.
• The practical and emotional burden placed on carers.

Many attendees identified strongly with his comments regarding the need for carers to act as coordinators between multiple organisations that often fail to communicate effectively with one another.

Young Carers – Julia and Elsie

The audience then heard from young carers Julia and Elsie, whose presentations left a lasting impression on everyone in the room.

Both spoke honestly about growing up while caring for family members with complex needs. They described responsibilities that included supporting parents during health crises, helping siblings with disabilities and managing situations involving emergency services.

Their stories demonstrated:

• The hidden nature of young caring responsibilities.
• The emotional impact caring can have on children and young people.
• The importance of early intervention and support.
• The value of dedicated young carers services.

Perhaps most importantly, they highlighted that while caring can build resilience, no child should have to face these responsibilities without support.

The standing ovation they received reflected the courage and honesty with which they shared their experiences.

Round Table Discussions

Following the morning speakers, attendees participated in facilitated round table discussions.

These conversations focused on:

• The biggest issues facing carers over the next six months.
• Practical actions that could help carers in their caring role.
• Barriers to accessing support.
• Positive examples of support that should be expanded.

Several common themes emerged from these discussions:

Earlier Identification

Many carers reported not being recognised as carers until they had reached crisis point. Participants called for earlier identification within GP surgeries, hospitals and community services.

Access to Information

Attendees highlighted how difficult it can be to find accurate and timely information about available support.

Financial Pressures

Many carers discussed the financial impact of caring, including reduced employment opportunities and increasing household costs.

Mental Health and Wellbeing

Carers spoke about the emotional strain of caring and the importance of counselling, respite and peer support services.

Speaker sessions resumes

Diverse Communities and Caring

A particularly thought-provoking presentation was delivered by Manal Ahmed, who supports carers from ethnically diverse and refugee communities.

She discussed additional challenges experienced by carers from minority communities, including:

• Language barriers.
• Cultural differences.
• Social isolation.
• Displacement trauma.
• Immigration-related issues.
• Financial and emotional dependency.

Manal explained that many carers experience multiple layers of disadvantage and that support services must be culturally aware and accessible to everyone.

She also highlighted positive examples of community-building activities that help carers connect with one another and reduce isolation.

Her presentation reinforced the importance of ensuring that no carer is excluded from support because of their background, language or circumstances.

My Presentation – A Carer’s Journey

I was invited to speak about my own experiences as a young carer and later as an adult carer supporting family members with autism and serious mental illness.

One of the key messages I shared was that many carers do not initially recognise themselves as carers. Like many people, I simply viewed what I was doing as helping my family.

However, over time I found myself:

• Coordinating care.
• Supporting hospital admissions and discharges.
• Managing appointments.
• Advocating with professionals.
• Navigating complex systems.
• Supporting multiple family members simultaneously.

I spoke about how difficult it can be when carers are not listened to or involved in important decisions.

I also highlighted the importance of recognising carers as equal partners in care and ensuring that professionals understand the expertise carers develop through lived experience.

One of the central themes of my presentation was carers’ rights.

I encouraged carers to:

• Identify themselves as carers.
• Seek support from local carers organisations.
• Request carers assessments.
• Learn about their rights.
• Participate in co-production and service improvement.
• Share their experiences to help reduce stigma.

To conclude, I performed my poem “It’s My Right”, which focuses on the rights every carer should expect to receive, including recognition, respect, involvement, information and support.

Afternoon Reflections and Future Priorities

The afternoon session included reflections from senior leaders from Care for the Carers, East Sussex County Council and NHS Sussex.

Discussions focused on:

• Improving identification of carers.
• Supporting carers before crises occur.
• Encouraging carers to access support services.
• Learning from positive experiences of care.
• Strengthening partnerships between carers and professionals.

Representatives acknowledged the crucial role carers play and listened to feedback gathered throughout the day.

Many carers expressed concerns about navigating systems that can often feel complicated and difficult to access. There was broad agreement that services should be simpler, more joined-up and more responsive to carers’ needs.

Key Messages from the Day

Several important messages emerged consistently throughout the event:

Carers Need Recognition

Many carers remain hidden and unidentified. Earlier recognition can lead to earlier support.

Carers Need Practical Support

Information, respite, emotional support and financial advice remain essential.

Carers Must Be Involved

Carers are experts in the lives of the people they support and should be treated as partners in care.

Young Carers Need Protection

Children and young people with caring responsibilities require dedicated support and opportunities to thrive.

Communities Matter

Strong local networks can help reduce isolation and improve wellbeing.

Prevention Is Better Than Crisis Management

Supporting carers early can prevent breakdowns in caring arrangements and reduce pressure on services.

Conclusion

The East Sussex Carers Voices Event was an excellent example of what can happen when carers, professionals and decision-makers come together to listen, learn and work collaboratively.

Throughout the day, carers shared powerful stories of resilience, commitment and compassion. They also spoke honestly about the challenges they face and the changes they want to see. I also recognised Agi who does lots of work raising carer awareness in Sussex, she recently spoke at my national ethnic mental health carers forum. So it was great to see her there.

Dr Neil Churchill’s leadership as host helped create an environment where carers felt able to speak openly and where decision-makers could hear directly from those with lived experience.

As Carers Week 2026 comes to a close, the challenge now is to turn these conversations into meaningful action. Carers should not have to struggle to be recognised, supported or heard.

The event demonstrated that when carers’ voices are placed at the centre of discussions, better solutions can emerge for everyone.

Thank you to Care for the Carers, all speakers, volunteers, professionals and carers who contributed to such a valuable and inspiring day.

National Ethnic mental health Carer Forum : May Update 2026

Blog by Ethnic Mental Health Carer forum Chair – Matthew McKenzie

The May 2026 Ethnic Mental Health Carers Forum brought together carers, researchers, clinicians, community leaders, and representatives from mental health organisations across England. Although attendance was smaller than usual, the discussion was rich, honest, and highly informative, covering Mental Health Act reform, carers’ experiences, service inequalities, innovative approaches to care, and new research opportunities.

For those who were unable to attend, this blog provides a comprehensive overview of the meeting, including key presentations, audience questions, responses from speakers, and useful resources shared during the session.

Opening Remarks

As the chair, I welcomed attendees and outlined the agenda. The meeting focused on following:

  • Mental Health Act research and reform
  • Carers’ experiences supporting loved ones through detention
  • Findings from a major East Sussex carers research project
  • Resources for carers under the Mental Health Act
  • Electronic Health Records and future developments
  • Wider discussions on racial trauma, inequalities, and service improvement

The meeting also provided opportunities for networking, sharing lived experiences, and highlighting innovative projects happening across the country.

Research Study: Supporting a Loved One Through Mental Health Detention

Dr Maeve Conneely from University College London opened the meeting with a presentation on a new research study exploring the experiences of people who have been assessed or detained under the Mental Health Act, as well as the experiences of family members and carers who supported them through that process. The study has been commissioned as part of the wider programme of Mental Health Act reform and aims to understand how the current “Nearest Relative” provisions operate in practice before changes are introduced under the new legislation.

Dr Conneely explained that researchers are particularly interested in hearing from carers who were involved in supporting a loved one but who were not formally recognised as the “Nearest Relative” under the existing legal framework. She highlighted that these experiences are especially important because they can reveal where carers have been excluded from decision-making, denied access to information, or prevented from contributing to assessments despite playing a significant role in supporting the individual concerned. The study is open to anyone aged 16 or over who has direct experience of Mental Health Act assessments, detentions, Community Treatment Orders, holding powers, or related interventions, whether as a patient or as a supporter.

The research is linked to ongoing reforms of the Mental Health Act and seeks to understand how the “Nearest Relative” provisions currently operate before changes are implemented.

Who Can Take Part?

The study is looking for:

  • People who have been detained under the Mental Health Act
  • Family members and carers who supported someone during detention or assessment
  • Individuals who should have been involved as a nearest relative but were not
  • Anyone aged 16 or over with relevant experience

Interviews are conducted online and participants receive a £30 shopping voucher as a thank-you for their time.

Key Question from Participants

Q: Does the study include situations where someone should have been involved but wasn’t?

Response: Yes. Researchers are particularly interested in understanding experiences where carers or family members were excluded from decision-making processes despite playing a significant caring role.

Another Important Question

Q: Do carers need permission from the person who was detained before participating?

Response: No. Carers are sharing their own experiences and therefore only need to provide their own consent.

Discussion Themes

Participants highlighted:

  • Long-standing inequalities affecting Black communities under the Mental Health Act.
  • The overuse of psychiatric labels without sufficient exploration of trauma.
  • The need to understand why some individuals receive significantly different experiences of care, including access to private mental health facilities.
  • Concerns about trust in mental health services and the lasting impact of poor experiences across generations.

Several carers committed to taking part in the study to ensure lived experience informs future policy.

East Sussex Carers Research Project: What Carers Told Us

Age Angiolini presented findings from a year-long carers-led research project examining the experiences of family carers supporting people with serious mental illness across East Sussex. The study was developed in response to repeated concerns raised by carers at local support meetings and sought to capture their experiences of interacting with mental health services provided by the Sussex Partnership Foundation Trust (SPFT).

Although the research received 71 responses, representing only a proportion of the carers population in the region, the findings revealed a striking consistency in the challenges carers face. The survey explored themes including carers’ involvement in care planning, communication with services, consent and confidentiality, quality of care, crisis support, and priorities for improvement. Among the most significant findings were that 72% of carers reported being only sometimes involved or not involved at all in their loved one’s care, 73% felt services relied too heavily on carers, and 72% said they regularly had to advocate to secure appropriate support. The research concluded that many carers feel undervalued, excluded from decision-making, and left carrying significant responsibilities without adequate recognition or support.

The study gathered responses from carers supporting people with:

  • Schizophrenia
  • Bipolar disorder
  • ADHD
  • Autism
  • Complex neurodiverse conditions

Although the sample size was relatively modest, the findings revealed significant and consistent concerns.

Key Findings from the report

Carers Feel Excluded

  • 72% reported being only sometimes involved or not involved at all.
  • 73% felt services relied too heavily on carers.
  • 72% said they had to advocate strongly to secure appropriate care.

Communication Failures

Participants reported poor communication between:

  • Mental health services
  • Assessment teams
  • Social services
  • Mental health liaison teams

Many carers described communications as inconsistent, unclear, and difficult to navigate.

Consent and Confidentiality

A recurring concern was that confidentiality procedures are often applied rigidly, preventing carers from sharing vital information during crises.

Carers argued that this can actively undermine effective care.

Quality of Care Concerns

The research found:

  • 90% reported insufficient care.
  • Significant concerns around continuity of care.
  • A strong desire for dedicated care coordinators.
  • Widespread frustration with crisis services.

Crisis Support is Not Working

Many carers reported that:

  • NHS 111 is often inadequate for mental health crises.
  • A&E is frequently unsuitable for people experiencing mental distress.
  • Services remain reactive rather than preventative.

Calls for Change

Recommendations included:

  • Better crisis pathways
  • Improved coordination between services
  • More trauma-informed approaches
  • Greater therapeutic support
  • Increased family involvement
  • Better support for neurodiverse individuals

The presentation sparked considerable discussion, with many attendees noting that the findings reflected experiences they had encountered for years.

Carers Speak Out: Frustration, Trauma and the Need for Change

One of the most powerful aspects of the meeting was hearing directly from carers.

Several participants reflected on decades of involvement with mental health services and expressed concern that despite repeated reviews, consultations, and reforms, many of the same issues continue to persist.

Common themes included:

  • Institutional racism
  • Poor communication
  • Exclusion of carers
  • Over-medicalisation
  • Lack of trauma-informed care
  • Inadequate support during crises

A number of attendees emphasised that families often become de facto care coordinators, managing appointments, services, medications, and crises while receiving little support themselves.

One participant observed:

“They plan, medicate and treat. We care. Our worlds don’t meet.”

Others highlighted the impact of racial trauma and the way mental health services can fail to recognise the cultural context of distress.

Open Dialogue: A Different Way Forward?

Ren Reins introduced the concept of Open Dialogue, an internationally recognised approach to mental health care that focuses on relationships, networks, and collaborative conversations.

Open Dialogue aims to:

  • Bring families and professionals together
  • Reduce fragmentation between services
  • Focus on lived experience
  • Build trust
  • Improve recovery outcomes

Ren explained that major NHS-funded trials are underway and encouraged carers to learn more about the approach.

The discussion generated significant interest, particularly from attendees looking for alternatives to traditional medical models of care.

Nearest Relative Resources Project

Professor Judy Laing from the University of Bristol provided an update on an innovative project designed to support family members and carers who hold, or may hold, responsibilities under the Mental Health Act’s “Nearest Relative” provisions. Drawing on previous research with carers and mental health professionals, Professor Laing explained that many family members who find themselves in the Nearest Relative role often receive little information, guidance, or emotional support despite carrying significant legal responsibilities. In response, her team secured funding to develop a free, co-produced online resource that helps carers understand their rights, responsibilities, and options when supporting a loved one through mental health assessment, detention, and treatment.

Developed in partnership with carers, family members, mental health professionals, and organisations including Mind, Rethink Mental Illness, and Carers Trust, the website provides practical information, downloadable tools, guidance for conversations with professionals, and resources to help carers look after their own wellbeing. Professor Laing stressed that the project has been shaped directly by the experiences of those who have undertaken the role themselves, ensuring that the guidance reflects the realities and challenges carers face in practice rather than simply explaining legal processes.

The project emerged from research identifying significant gaps in information and support for people carrying out the “Nearest Relative” role.

What Has Been Developed?

The project has created a free online resource containing:

  • Information about legal rights
  • Guidance on conversations with professionals
  • Practical tools for meetings
  • Support for carers’ wellbeing
  • Resources explaining upcoming legal changes

The materials have been co-produced with carers and family members.

Questions Raised

How are diverse communities included?

Participants asked how the project ensures equity and accessibility.

Professor Laing explained that:

  • People from ethnic minority backgrounds have contributed to development.
  • Resources are being improved to increase accessibility.
  • Additional funding is supporting work around inclusion and accessibility.
  • Translation and alternative formats are being explored.

How is the project promoted?

Discussion focused on ensuring communities are aware of available support rather than resources existing only online.

Professor Laing outlined efforts involving:

  • Mind
  • Carers Trust
  • Mental health services
  • Local media
  • Carer forums

How will the new Nominated Person role protect carers who have traditionally been involved in supporting a loved one?

Several participants expressed concern that replacing the Nearest Relative role could unintentionally weaken the involvement of family members who have historically provided substantial support during periods of mental ill-health. Questions were raised about situations where a person may choose someone other than their primary carer to act as their Nominated Person, potentially reducing carers’ ability to access information or participate in key decisions. Professor Laing acknowledged that these concerns have been raised by many carers and explained that the practical details of how the new system will operate are still being developed. She stressed the importance of carers contributing their experiences to ensure that future guidance recognises the valuable role families often play in supporting recovery and maintaining continuity of care.

What support is available when professionals fail to recognise or understand carers’ legal rights?

Attendees also discussed the reality that many mental health professionals are not always familiar with the legal powers and rights associated with the Nearest Relative role. Participants described situations where carers were excluded from discussions, not informed of important decisions, or felt unable to challenge professional opinions because they lacked confidence in their understanding of the law. In response, Professor Laing highlighted that one of the main objectives of the Bristol resources project is to bridge this knowledge gap by providing practical tools, suggested questions, and clear explanations of carers’ rights. She noted that the project is also developing resources aimed at professionals themselves, with the goal of increasing awareness and ensuring that carers’ legal rights are better understood and respected across mental health services.

Attendees welcomed the commitment to increasing visibility.

Electronic Health Records and Future Developments

Dr Anna De Simoni, an Academic GP and Associate Professor of Primary Care at Queen Mary University of London, presented an early-stage research proposal focused on how electronic health records could be used to better understand and map the social support networks surrounding people living with multiple long-term health conditions.

Dr De Simoni sought direct feedback from carers to help shape the project before a formal funding application is submitted. She explained that while healthcare professionals can usually identify a patient’s next of kin and household members through existing GP records, they often have very limited understanding of the wider support networks that play a vital role in a person’s wellbeing.

These networks may include family members, neighbours, friends, faith groups, community organisations, carers, and others who provide practical and emotional support. The research aims to explore whether technology and electronic health records can help healthcare professionals better recognise these support systems and use that information to improve care planning, reduce unnecessary hospital admissions, and enhance quality of life for people living with complex health conditions.

The discussion generated considerable interest, particularly regarding:

  • Information sharing
  • Integration across services
  • Support for carers
  • Data protection concerns
  • Improving continuity of care

Several participants expressed enthusiasm about the potential benefits while also raising questions regarding privacy and access to NHS information.

Questions and Answers from Dr Anna De Simoni’s Presentation

Q: What problem is this research trying to solve?
A: Dr De Simoni explained that healthcare professionals often know very little about the wider support network surrounding a patient. While medical records may identify a next of kin or people living in the same household, they rarely capture the full picture of who is actually providing practical, emotional, or day-to-day support. The project aims to better understand these social networks and use that information to improve care planning and patient outcomes.

Q: Who is the research aimed at?
A: The initial focus is on people living with multiple long-term health conditions, including illnesses such as COPD and other complex health needs e.g mental health. The project seeks to understand how stronger recognition of support networks could improve quality of life, reduce hospital admissions, and support people to remain independent for longer.

Q: How would patients contribute information about their support network?
A: The proposal includes the use of a Universal Care Plan through the NHS App. Patients would be able to enter information themselves about what matters to them, who supports them, how they prefer to be treated, and what should happen if their health deteriorates. This information could then be viewed and updated by relevant healthcare professionals.

Q: What role could carers play within the proposed system?
A: Participants highlighted that carers often provide the majority of practical support but are frequently invisible within healthcare systems. The proposed approach could make carers more visible by helping professionals understand who is involved in supporting a patient and what role they play in maintaining wellbeing and independence.

Q: How will patient confidentiality and data protection be managed?
A: Concerns were raised about privacy and the security of NHS data. Dr De Simoni explained that information governance, GDPR compliance, and data protection would be central to the project. Specialists in privacy and information governance would be involved to ensure that any information collected is handled safely, appropriately, and with proper consent.

Key Discussion: Why Are Carers Still Fighting the Same Battles?

A recurring theme throughout the meeting was the sense that many challenges identified today are the same challenges carers raised ten or twenty years ago.

Questions included:

  • Why are services still fragmented?
  • Why do carers continue to feel excluded?
  • Why are communication problems so persistent?
  • Why is trauma often overlooked?
  • Why do inequalities remain entrenched?

Participants reflected on whether the issue is primarily one of resources, leadership, service design, or culture.

Many agreed that meaningful change requires carers to remain actively involved in shaping policy and service delivery.

Resources and Links Shared During the Meeting

Mental Health Act Research Study

Email:
nrmha@ucl.ac.uk

Eligibility:
People aged 16+ who have experience supporting someone assessed or detained under the Mental Health Act.

Nearest Relative Resources Website

Welcome to the resources

Nearest Relative Resources Impact Report

https://bpb-eu-w2.wpmucdn.com/blogs.bristol.ac.uk/dist/a/1212/files/2026/05/2026-05-Nearest-Relatives-Resources-impact-report.pdf

POPs Facebook Group

https://www.facebook.com/groups/POPSUnitedKingdom

A carers support group recommended during discussion as a source of peer support and shared experience.

Final Reflections

The May 2026 Ethnic Mental Health Carers Forum highlighted both the challenges carers continue to face and the determination across the sector to improve outcomes.

From Mental Health Act reform and carers’ rights to innovative approaches such as Open Dialogue, the meeting demonstrated the importance of bringing together lived experience, research, policy, and practice.

Several speakers reminded attendees that change often begins with carers sharing their stories, participating in research, challenging poor practice, and helping shape future services.

The forum remains an important space where those voices can be heard.

Who is – A Poem for Mental Health Carers by Matthew McKenzie

Mental health carers often navigate a system that feels fragmented, leaving them unheard and unseen. My new spoken word poem, “Who is”, explores this reality asking who is believed, listened to, supported, or left behind when the challenges of mental illness take hold.

Taken from my upcoming poetry collection, Unpaid, Unseen and Yet Unbroken (launching 2026), this piece reflects the experiences of unpaid carers, particularly from ethnic minority communities, who face the added burden of navigating a system that often overlooks their voices.

Through poetry, I hope to open a conversation about the importance of listening, understanding, and valuing carers’ lived experiences.

🎥 Watch the full poem here: Who is – Spoken Word Poem

Attending the West Kent Paddock Wood Carers Group

By Matthew McKenzie – Carer Activist

Recently, I had the privilege of attending and speaking at the West Kent Paddock Wood Group, and I wanted to take a moment to reflect on the experience, not just as a speaker, but as a mental health carer among peers who truly understand the journey.

The session took place at Unit 1 Eastlands, Maidstone Road in Paddock Wood, a welcoming and accessible venue that immediately set the tone for openness and support. From the moment I arrived, it was clear that this was a safe space. The event was hosted by Naomi Muigua who is the Social Care Involvement Officer.

The structure of the morning was thoughtfully organised, with time for introductions, discussion, and shared learning, all underpinned by respect, confidentiality, and equality among attendees .

A Community that works to understand carers

What stood out to me most was the diversity of lived experience in the room. Carers supporting loved ones with dementia, autism, and complex health needs came together, each bringing their own story, challenges, and resilience. It reinforced something I’ve long believed: carers often feel invisible in wider society, but in spaces like this, they are seen, heard, and valued.

The group is supported by organisations and professionals who are genuinely committed to reducing isolation and improving access to services. From digital inclusion to transport and community support, there’s a real effort to make sure carers are not left navigating the system alone

Sharing My Journey as a Mental Health Carer

As the invited speaker, I spoke from my own lived experience as a mental health carer. My journey began as a young carer supporting my mother, who developed schizophrenia, while also helping care for my brothers with non-verbal autism. Over the years, that experience has shaped not only my life, but my purpose.

During my talk, I shared:

  • The emotional reality of becoming a carer—often suddenly, without preparation
  • The confusion and isolation that can come with navigating mental health systems
  • The importance of recognising carers as partners in care, not just bystanders
  • The long-term impact on mental health, identity, and wellbeing

I also spoke about the concept of “lived experience”—something I feel strongly should be embedded in health and social care systems. If professionals are to truly understand and support carers, they need to hear directly from those who live it every day.

One of the key messages I left with the group was this:
Carers are the hidden link that holds everything together. Without them, the system simply could not function.

This was taken from my poem off my book.

The Conversations of the group

What made the session particularly powerful wasn’t just the presentation, it was the discussion that followed. Carers openly spoke about:

  • Not knowing where to go for help
  • The complexity of accessing services
  • Feeling that outcomes often depend on how well you can advocate
  • The emotional toll of long-term caring

These are not small issues, they are systemic challenges. But spaces like this group allow those conversations to happen honestly, and more importantly, collectively.

Why Groups Like This Matter

The West Kent Paddock Wood Group is actually a lifeline to carers as it provides:

  • A supportive peer network
  • Access to information and local services
  • A platform for carers’ voices to be heard
  • A sense of belonging that many carers lack

For anyone who is caring for a loved one, especially in mental health, I cannot stress enough how important it is to connect with others who understand. You don’t have to do this alone.

Final Thoughts

Leaving the session, I felt both humbled and encouraged. Humbled by the strength of the carers in the room, and encouraged by the existence of a group that is actively working to support them.

If you are a carer in Kent, or even just exploring what support is available, I would strongly recommend attending the West Kent Paddock Wood Group. It is a space where your voice matters, your experience is valid, and your wellbeing is recognised.

For me, it was not just an opportunity to speak, it was an opportunity to connect, learn, and continue advocating for carers everywhere.

If you want to find out more about Kent County Council support for unpaid carers, see link below.

https://www.kent.gov.uk/social-care-and-health/adult-social-care/care-and-support/caring-for-other-people/support-for-carers

Hospital Carer Discharge Meeting – March Update 2026

By Matthew McKenzie (Chair)

I chaired our March hospital discharge network meeting with a real sense of momentum building across the system. What continues to strike me is the mix of voices in the room, commissioners, carers centres, hospital representatives, and grassroots advocates all trying to tackle the same persistent issue: how we properly involve and support unpaid carers during and after hospital discharge.

As someone with lived experience, particularly in mental health and complex care, I always come back to one key question:
Are carers being treated as partners, or are they still being treated as visitors?

This meeting gave us a very honest answer progress is happening, but there is still a long way to go.

Key Presentation: Derbyshire HConnect Project

Emma’s presentation was, for me, an important part of the meeting not because it introduced something completely new, but because it clearly articulated what many carers have been saying for years, and then actually did something about it.

What stood out immediately was that this wasn’t a project designed in isolation. It was built directly from carer voice and lived experience. The starting point wasn’t “how do we improve discharge?” it was “what are carers actually experiencing right now?”

And what carers described was difficult to hear, but not surprising.

Carers spoke about not being recognised at all. Some said no one had even asked if they were a carer. Others described situations where their knowledge of the person they care for was ignored, even when it was critical. One example that stayed with me was a carer describing their loved one being discharged in the middle of winter, late at night, without proper clothing or preparation.

There was a consistent feeling that once someone enters hospital, the carer’s role is almost paused or worse, dismissed entirely.

What the HConnect project does differently is acknowledge that this isn’t just a communication issue it’s a system and culture issue.

Instead of relying on one intervention, the model works across multiple layers of the hospital system. It introduces dedicated hospital liaison workers who build relationships with wards, while also ensuring carers themselves are visible and supported directly on-site. At the same time, it invests in staff through training, guidance, and practical tools so that engaging carers becomes part of everyday practice rather than an optional extra.

What I found particularly important is that the project doesn’t assume staff are unwilling—it recognises that many staff simply lack the confidence, knowledge, or structure to engage carers properly. In fact, the findings showed that many hospital teams had never received any formal carer awareness training and were often unaware that carers even have a legal right to be involved in discharge planning.

The research element of the project adds another layer of depth. Through interviews with carers, several consistent themes emerged.

Carers described feeling invisible—treated as visitors rather than partners in care. They talked about their expertise being dismissed, even when they knew the patient best. Communication was often unclear or inconsistent, and discharge frequently felt rushed, with little notice or preparation. In many cases, carers ended up acting as the safety net catching mistakes, coordinating care, and managing complex needs on their own once the person returned home.

What struck me most is that these issues aren’t just isolated incidents they are patterns.

But importantly, the presentation didn’t just focus on what’s going wrong. It also highlighted what good looks like. In situations where carers were listened to, involved early, and treated as equal partners, the entire experience changed for both the carer and the patient. The challenge now is making that level of practice consistent, not exceptional.

The project is already showing tangible impact. There has been a noticeable increase in carers being identified within hospital settings, more referrals coming directly from health professionals, and hundreds of carers receiving support through the programme.

For me, the biggest takeaway from this presentation is this:

This isn’t about adding more services it’s about changing behaviour across the system.

The HConnect model recognises that for carers to be properly involved, three things need to be in place: staff need the capability to identify carers, the opportunity within the system to engage them, and the motivation to see this as a core part of care. Without all three, change simply won’t stick.

And that’s why this work matters. Because until carers are consistently seen, heard, and included, we will continue to see the same issues repeating no matter how many initiatives we introduce.

Lewisham Commissioner Update

From Lewisham’s commissioning side, there were some strong practical developments.

A key initiative is the rollout of a carer welcome pack, designed to be:

  • Clearly visible in hospital settings
  • Easily accessible to carers at the point of need

This is being strengthened through:

  • Increased collaboration with hospital staff
  • Plans to expand distribution across wards

From Lewisham, we also received a really significant update around system-level change, particularly the development of a Standard Operating Procedure (SOP) for engaging unpaid carers in hospital settings.

This work has been led across South East London ICB, with an external partner supporting the design. The aim of the SOP is to provide:

  • Clear guidance to hospital wards
  • Practical prompts and questions for staff
  • A consistent approach to identifying and engaging carers during hospital stays

What stood out to me is that this isn’t just a document, it’s designed to change behaviour on the ground. It focuses on something simple but powerful:
how staff start conversations with carers and recognise the people already supporting patients.

In Lewisham, University Hospital Lewisham was selected as one of the pilot sites, with two wards testing the approach. The next stage is particularly important:

  • The SOP is being embedded into Trust templates
  • It is due to be presented to the Trust board for formal approval
  • There are plans to roll this out across Lewisham and Greenwich NHS Trust, including Queen Elizabeth Hospital (Woolwich)

What I found especially encouraging is that carers have been involved throughout:

  • Input gathered through workshops
  • Further feedback taken to the Lewisham Council’s Open Carers Forum
  • Ongoing opportunity for boroughs to adapt the SOP to local needs

Alongside this, Lewisham is continuing practical work on the ground:

  • Strengthening links between commissioned carers services and hospital staff
  • Expanding visibility through carer welcome packs and information points within the hospital

For me, this is one of the most important developments discussed in the meeting. If implemented properly, a shared SOP like this has the potential to:

  • Reduce inconsistency across wards
  • Embed carer identification into everyday practice
  • Move us closer to a system where carers are routinely recognised—not accidentally discovered

Hospital Update: Lewisham & Greenwich NHS Trust

A really important contribution came from the patient experience perspective at Lewisham and Greenwich NHS Trust, which covers University Hospital Lewisham and Queen Elizabeth Hospital (Woolwich).

From the Trust side, there was clear recognition that:

  • The work carers are doing is valuable and essential to patient outcomes
  • There is a need to improve physical visibility of carer support within hospital settings
  • Space and infrastructure need to better support engagement (for example, identifying a permanent location for carer engagement and resources)

There was also a willingness to:

  • Explore how carer-led engagement (including my own involvement) can be better embedded within the hospital environment
  • Strengthen links between patient experience teams and carers organisations

From my perspective, this was a positive and practical discussion. Too often we talk about engagement in theory—but here we were talking about where the table actually goes on the ward, and that level of detail matters.

Because if carers can’t see you, they can’t access you.

Greenwich (Commissioning & Mental Health)

Greenwich colleagues spoke about their broader system approach, particularly within mental health.

Their focus includes:

  • Identifying gaps in carer support across services
  • Embedding carers within commissioning priorities
  • Understanding what carers themselves want from local systems

They also posed an important question to the group:
What should local authorities prioritise for carers?

My answer was straightforward:
We need clear leadership and accountability, a named person or role responsible for carers across the system.

Without that, good work risks becoming fragmented.

Lambeth Carers Hub (King’s College Hospital & St Thomas’ Hospital)

Lambeth shared a detailed and honest update regarding their work across King’s College Hospital and Guys and St Thomas Hospital

Key points included:

  • Their hospital discharge project is continuing, but with reduced capacity due to funding constraints
  • They have secured a short-term extension, allowing work to continue until September
  • A major focus is now embedding carer awareness training into staff induction processes

Importantly, they raised a systemic issue:

  • The need to hold commissioned care agencies accountable, particularly when carers report poor-quality care after discharge

This is critical. Discharge doesn’t end at the hospital door—if the care package fails, the whole system fails.

Southwark Council Update

From Southwark, we heard about work being done at a system level, particularly linked to:

  • Development of discharge information resources across South East London
  • Collaboration across boroughs and NHS partners

The intention is for these resources to be:

  • Widely accessible and adaptable
  • Used across multiple organisations, rather than siloed locally

Given the proximity to major hospitals like King’s College Hospital and GSTT hosptal, this kind of coordinated approach is essential.

City & Hackney Carers Centre (Homerton Hospital)

A more concerning update came from City & Hackney, particularly regarding work linked to Homerton Hospital.

They reported:

  • The loss of a hospital discharge worker role
  • A significant drop in referrals to the carers centre as a result
  • Reduced presence within the hospital environment

This clearly demonstrates something we often say but don’t always quantify:

When you remove dedicated roles, you remove outcomes.

The worker’s presence had been directly contributing to engagement and referrals. Without that, carers are once again at risk of being missed.

Richmond Carers Centre (Kingston Hospital)

Updates from Richmond Carers Centre highlighted both strong engagement and opportunities to build further.

Positives:

  • Strong referral pathways coming through from Kingston Hospital, particularly linked to discharge activity
  • Ongoing professional awareness work, helping improve understanding of carers across services

There is a clear foundation here, with established relationships already supporting carers into services. The opportunity now is to build on that by increasing visibility and strengthening in-hospital engagement further.

Richmond Borough Mind (Springfield Hospital – SWLSTG)

From Richmond Borough Mind, the focus was more specifically on their work within South West London and St George’s Mental Health Trust (SWLSTG), particularly at Springfield Hospital.

Key challenges highlighted:

  • Difficulty accessing wards within Springfield Hospital, limiting direct engagement with carers
  • Limited contact with carers when based in general hospital areas rather than embedded on wards
  • Ongoing challenge in identifying where carers are most visible and reachable within mental health settings

What came through strongly is that, despite proactive efforts such as setting up stands and being present on-site, footfall from carers remains low unless services are embedded directly into ward environments.

This reinforces a key point for me:

In mental health settings especially, access is everything—if you’re not where carers are, you simply won’t reach them.

Bexley Carers (Post-Discharge & Reablement Focus)

Bexley brought an important perspective that often gets overlooked what happens after discharge.

Their work is focusing on:

  • Supporting carers once reablement packages end
  • Recognising that carers often deprioritise themselves during discharge, only to struggle later
  • Increasing concern around safeguarding and mental health, particularly in dementia care

This is where we need to shift thinking:
Discharge is not the endpoint—it’s the start of a new phase of care.

Cross-Cutting Reflections

Across all updates, several consistent themes emerged:

  • Inconsistent carer identification across wards and trusts
  • Funding fragility, with projects often short-term
  • Need for embedded training, not optional sessions
  • Importance of visibility within hospital environments
  • Gaps in post-discharge support, especially after reablement

My Closing Thoughts

Chairing this meeting, I was struck by both the progress and the gaps.

There is innovation happening in Derbyshire, in Lambeth, in Lewisham, across South East London. But it’s uneven. And carers feel that inconsistency every day.

For me, the priority remains clear:

  • Identify carers early
  • Involve them properly
  • Support them beyond discharge

Because when we get that right, everything else improves—outcomes, safety, and experience.

And until we get that right consistently, we still have work to do.

Reflections from the Royal College of Nursing PSI Alumni Conference 2025 – A Carer’s Perspective

Arriving and Opening Reflections

Walking into the RCN PSI Alumni Conference at Cowdray Hall on that crisp November morning, I felt a mix of pride, gratitude, and curiosity. It’s been many years since I first began speaking at RCN events like this, yet every time feels new because each gathering brings together nurses, carers, service users, and leaders who continue to shape the future of mental health care.

Before I continue to describe the event, let me sum up the Royal College of Nursing PSI programme. Basically the Psychosocial Interventions (PSI) programme is a nationally recognised training initiative designed to strengthen therapeutic skills of mental health professionals and embed recovery-focused, relationship-based care across services.

The PSI program is rooted in the principles of collaboration, reflection, co-production and empowerment, PSI equips practitioners with practical tools to support individuals experiencing mental distress, while also valuing the insight of carers and families.

I think what makes PSI stand out is its emphasis on seeing people beyond their diagnosis and fostering empathy, curiosity, and shared understanding between nurses, service users, and carers.

At the start of the conference and during it, I spoke to a few nurses over coffee, each reflecting on how PSI had shaped their practice one mental health nurse told me it had helped her “find her voice again.” For me, as a carer with lived experience, it was great to witness this sense of renewal. It reminded me why collaboration between professionals and lived experience communities is so essential.

Around 10 a.m., Catherine Gamble formally opened the event, setting a tone of gratitude and shared learning. Her introduction reminded us how much the alumni network had grown and how lived experience was now firmly part of the PSI culture.

As someone with lived experience of caring for my mum, who lived with schizophrenia, I approached the events not just as an observer but as someone deeply invested in the stories and struggles that bring us together as a triangle.

When I was invited to open the event and share my reflections as a carer, I knew I wanted to do more than talk about carers, I wanted to speak for them, and with them.

My Opening Talk – “The Nurses Who Walk With Us”

Standing at the podium, looking out at rows of passionate mental health nurses and lived experience, I began with gratitude. My words were simple but heartfelt:

“This is really about the nurses who walk with us, the ones who move beyond the labels, beyond the charts, and see the person, not the problem.”

I read a poem I had written to honour the compassion and resilience of those in the room a piece I called The Nurses Who Walk With Us.

The poem spoke about presence, about listening, and about the small acts of care that ripple into great change.

After my talk, I was moved by the warmth of the response. Many came up to share how my words mirrored their experiences or reminded them of why they came into nursing. That moment of connection that shared understanding set the tone for the day.

The Locksmiths Animation and Alumni Showcase

Following our opening session, Ellie Gordon and Stephen Jones launched the new animation “We Are the Locksmiths.” The film poetically portrayed mental health nurses as key-cutters shaping, adapting, and helping people find the right fit for recovery.

Watching it, I was struck by how accurately it captured the emotional labour of care, the balancing of vulnerability, patience, and professionalism

Next we had the Mentimeter session that morning, which was led by Professor Sally Hardy. She guided participants through reflective wellbeing questions using the interactive Mentimeter tool, encouraging everyone to think about how to sustain personal and professional wellbeing in mental health practice. Sally’s session wasn’t just about gathering feedback

Afterwards, the Alumni and Facilitators’ “Show and Tell Time” began. Groups from Sheffield NHS Trust, Sussex Mental Health Partnership, Lancashire Mental Health NHS trust, and Hereford NHS Trust sharing creative projects and reflections from their PSI practice. There were posters, poems, and community initiatives that had grown directly from the training. I wandered around the tables, speaking with participants who described how PSI had changed their teams. I think One mental health nurse told me, “We stopped seeing interventions as techniques and started seeing them as relationships.” It was inspiring

Workshop One – Working Together in Risk and Safety

After refreshments, we broke into workshops. I joined Workshop One: Lived Experience and Co-Production – Utilising Our Expertise, led by Hannah Cadogan and colleagues. It was energising to see lived experienced and mental health nurses working side by side.

I spoke about what co-production really means from a carer’s point of view. I shared my journey as someone who has cared for a family member living with schizophrenia and another with autism, and how those experiences taught me the importance of being included as an equal partner in care.

I explained that carers often hold a deep understanding of the person they support insights that can make a real difference if professionals take the time to listen and involve us from the start, not as an afterthought. Drawing on my work with Carers UK, the Carers Trust, and the Triangle of Care as many nurses from the mental health trusts were members of triangle of care programme., I spoke about how true co-production is built on trust, openness, and shared learning.

We discussed barriers time, fear, power differences but also solutions, like embedding co-production in supervision and reflective practice.

In this session, the discussion turned to how we can meaningfully involve carers and service users in planning safety not as tick-box exercises, but as genuine collaborations. I found myself reflecting on my own experiences of sitting in meetings where decisions were made about my mum rather than with us.

Hearing the nurses speak so openly about their challenges about time pressures, fear of getting it wrong, and the emotional toll of risk reminded me that we’re all human in this process. True co-production means sharing not only responsibility but also vulnerability.

One participant spoke about the importance of patience: “We’re not here to fix; we’re here to find a way in.” That line stayed with me. It echoed my own philosophy that care starts with listening, not solving.

By the end of the workshop, we agreed that co-produced safety isn’t about removing risk; it’s about building trust so we can face risk together.

Workshop Two – Co-Production and Carer Involvement

Lunch provided another opportunity for networking. The Mental Health Forum stand and MHP stall displayed resources on psychosocial practice.

I met others who had recently completed the course.

Conversations were open, curious, and full of mutual respect the kind of professional empathy that sustains hope in challenging work.

After lunch we heard from Professor Nicola Ranger, RCN General Secretary, who welcomed everyone back, commending the alumni for sustaining PSI’s legacy. Her words “you are the custodians of compassion” perfectly captured the spirit of the day.

The evaluation session of the RCN PSI Alumni Conference was presented in partnership with London South Bank University (LSBU), who have been key academic collaborators in examining the outcomes and long-term impact of the Psychosocial Interventions (PSI) programme. This section was introduced by Stephen Jones, and Professor Chris Flood, a leading figure in mental health nursing and research at LSBU.

Together, they outlined how LSBU’s evaluation seeks to capture not just the quantitative outcomes of PSI such as improved confidence and competence among practitioners but also the qualitative stories of change, growth, and compassion that the alumni community embodies.

There will be several teams at LSBU, but I was impressed on the make up of the Advisory and Supervisory Team provides academic oversight and strategic direction.

  • Professor Patrick Callaghan, Professor of Mental Health Science at LSBU, offers extensive expertise in psychosocial interventions and nursing research leadership.
  • Professor Chris Flood, a leading mental health and adult nurse researcher, specialises in health economics, survey design, and qualitative inquiry.
  • Professor Neil Brimblecombe, Professor of Mental Health and Learning Disability, contributes his expertise in workforce development, nurse prescribing, and policy analysis linking the PSI evaluation to broader NHS workforce strategies.
  • Professor Eddie Chaplin, an expert in intellectual disabilities and psychosocial interventions, supports the development of inclusive frameworks for peer support, guided self-help, and service co-production.

Afternoon workshop

In the afternoon, I attended Workshop Three: Working Together in Risk – Co-Production, Suicide and Personalised Safety. It was deeply emotional. We discussed how carers can be crucial in early warning and safety planning, but only if professionals create safe spaces for them to speak. The workshop was presented by Berkshire Healthcare NHS Foundation Trus

During the workshop, we took part in reflective exercises that encouraged us to consider what “shared safety” truly means. We were asked to think of times when communication broke down between families, patients and professionals, and how different outcomes might have been possible if trust and collaboration had been stronger.

Celebrating Archievements

Those who finished the RCN PSI programm were presented with a RCN PSI alumni badge, which i felt was a small but powerful symbol of commitment, compassion, and continued learning. For many, receiving that badge wasn’t just about completing a programme; it represented belonging to a network that values empathy, partnership, and the courage to keep improving mental health care together.

Reflections and Looking Ahead

As the day drew to a close, we took a quiet moment to reflect. Conferences like this are not just about learning they are about belonging. They remind me that, while the caring role can often feel isolating, there is a wider network of understanding and solidarity.

I missed out a lot more that took place at the alumni event, but watch out for more exciting news from the RCN in future.

To find out more about the RCN PSI Progamme, click link below.

https://www.rcn.org.uk/Professional-Development/Educational-programmes-and-services/Psychosocial-Intervention-Programme

Shaping the Future of Support for Unpaid Carers in Lewisham

By Matthew McKenzie FRSA BEM – Triangle of Care community chair

As a carer living in Lewisham, I know just how important it is that our voices are heard and that the support available truly meets our needs. Whether we’re looking after a parent, a partner, a child, or a friend, we all share the same challenges balancing care responsibilities, work, our own wellbeing, and often feeling invisible in the process.

That’s why I wanted to share something that directly affects all of us. Lewisham Council and the NHS South East London ICB are currently developing a new Action Plan for Unpaid Carers (2025–2028). This plan will set out how the Council aims to identify, value, and support more carers over the next few years.

The team leading this work, including a new member who recently joined the Adults Integrated Commissioning Team, is reaching out to carers across the borough to get our feedback.

Continue reading →

The Power of Lived Experience and Carer Voices in Healthcare: A Conversation with Hannah Codogin

By Matthew McKenzie – Carer activist

In a recent interview, Matthew McKenzie sat down with Hannah Codigan, a palliative care nurse who brings a unique perspective to healthcare, not only as a professional but also as someone with lived experience of serious mental illness. Together, they explored the importance of recognising unpaid carers and embedding lived experience voices in the design and delivery of healthcare services.

Caring Beyond the Patient

Hannah shared how her role in hospice care extends beyond patients to include families and carers who often struggle without recognition. She emphasised that carers need as much emotional and practical support as the people they care for, noting how time pressures in nursing can make it difficult to truly listen to their experiences.

Continue reading →

What Makes for Meaningful Carer Involvement?

By Matthew McKenzie FRSA BEM, Chair, Triangle of Care Community Group

This week’s Triangle of Care Member Webinar, hosted by Carers Trust, which focused on a vital question: What makes for meaningful carer involvement?

We heard from across the Triangle of Care network, these being carers, professionals, and trust representatives coming together to share what genuine involvement looks like in practice.

I spoke about my own lived experience as a carer, supporting two non-verbal brothers with autism and my late mother with mental health challenges and how this journey has shaped my advocacy for stronger partnerships between carers and professionals.

Over the years, through the Triangle of Care, I’ve seen how much difference early and equal involvement can make.

Continue reading →

Filming My Story as a Carer with Specsavers Carers Hub

Today I had the opportunity to be interviewed for the Specsavers Carers Hub, a platform that shares real stories, advice, and support for those who dedicate their lives to caring. It was a chance to reflect not only on my role as a carer but also on the deeper themes of healing, connection, and creativity that shape my journey.

Telling My Story

As someone with lived experience of caring for my mother and brothers, I know first-hand how demanding and emotional the role of an unpaid carer can be. I shared their story through my words and memories.

Speaking on camera about my caring role reminded me why visibility matters. Carers often go unseen, yet carer voices hold the power to inspire change, raise awareness, and remind others that they are not alone.

The Importance of Self-Healing

One of the most important parts of my journey has been recognising the need for self-care and self-healing. Carers often put the needs of others before their own, but to continue supporting loved ones, we must nurture our own wellbeing. Whether through reflection, community, or creative outlets, finding ways to heal is not selfish.

Connecting with Carers

During the interview, I spoke about the importance of connection. Meeting other carers, whether through groups, campaigns from Carers UK, or online spaces, brings a sense of solidarity. I wont say much about the interview, you will need to watch the video when it is released.

The Power of Poetry and Words

For me, poetry has always been a form of healing. Writing and performing allows me to give shape to emotions that are often hard to express. In the beginning of my caring journey, words were painful, but after a while words can be medicine they can validate, soothe, and inspire both writer and listener.

A Special Thanks to Specsavers

I couldn’t end without mentioning the role my Specsavers glasses played in my journey. Whether it’s writing late into the night, reading the works that inspire me, or standing up to perform poetry, my glasses have been an essential tool.

To check out previous carer stories, please viset the Specsavers Carers Hub below.

https://www.youtube.com/@SpecsaversCarersHub

Keep an eye out for the latest set of videos from Specsavers Carers hub