Tag Archives: carers rights

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.

Hospital Carer Discharge Meeting – May Update 2026

By Matthew McKenzie – Chair of the Carers Hospital Discharge group

Hospital discharge remains one of the most critical and stressful moments for unpaid carers, patients and healthcare professionals alike. During the recent Carers Hospital Discharge Group meeting held in May 2026, professionals, carers, NHS leaders, hospital representatives and community organisations came together to discuss major developments affecting carers across London and beyond.

The Carers Hospital Discharge meeting runs every 2 months and for the month of May we discussed improving hospital discharge processes, strengthening carer identification, digital inclusion, community support and the growing role of technology in healthcare planning.

The blog update is for those unable to attend, here is a summary of the key discussions, presentations, questions and responses shared during the session.

Universal Care Plan Expansion Through the NHS App

One of the biggest updates came from NHS England, who shared exciting news about the expansion of the Universal Care Plan (UCP).

The new development allows patients and members of the public to begin creating their own Universal Care Plans directly through the NHS App. Previously, only clinicians could initiate many aspects of these plans.

NHS England explained that editable sections now include areas such as:

  • “What matters to me”
  • Communication preferences
  • Care and contingency plans
  • Personal support needs

Clinical sections, however, remain under healthcare professional control.

Updates described the project as a major milestone after years of discussion about allowing people greater control over their own care information.

Question from attendee:

“Will carers be able to input on behalf of their cared-for person?”

response from presenter:

At present, carers cannot directly complete plans on behalf of another person due to safeguarding and proxy access concerns. However, carers can still complete their own care contingency plans within the system.

It was explained that this means if a carer suddenly becomes unable to provide care, emergency services and healthcare providers would be alerted that a contingency plan exists.

They also noted that community organisations could potentially support individuals with completing plans, provided appropriate governance and data security arrangements are in place.

The discussion highlighted both the opportunities and challenges of balancing digital access with safeguarding responsibilities

*****

For more developments on the Universal Care PLan, I have provided the link below of the recent Webinar

UCP Webinar: Supporting Patient Editable Access to the Universal Care Plan – Guidance for Professionals (May 2026)
https://vimeo.com/1190395114/37af950076?share=copy&fl=sv&fe=ci

New Research on Social Networks and Healthcare Support

Matthew McKenzie introduced an emerging research project led by Queen Mary University of London alongside several major universities including Harvard, Oxford and Warwick.

The project aims to explore how patients’ social support networks influence health outcomes, hospital admissions and long-term wellbeing.

Researchers are developing tools to map patients’ support systems, including:

  • Family carers
  • Friends
  • Peer groups
  • Community support
  • Online social networks

The project seeks to better understand how strong support systems can improve self-management and reduce avoidable hospital admissions.

Matthew explained that researchers are particularly interested in understanding:

  • Whether support network mapping would feel helpful or intrusive
  • How carers should be recognised within healthcare systems
  • How cultural differences affect support networks
  • What safeguards around privacy and consent are needed

The proposal sparked interest among attendees because it reflects a wider NHS shift toward community-based care and prevention.

NHS England connected the project to wider work around “family group conferencing,” where whole-family approaches are used to plan care and support more collaboratively.

NHS England’s Urgent and Emergency Care Strategy 2025/26

A major section of the meeting focused on NHS England’s emerging Urgent and Emergency Care (UEC) Strategy.

Matthew presented some notes on NHS England UEC outlining plans to:

  • Reduce avoidable hospital admissions
  • Deliver more care within communities
  • Expand digital healthcare access
  • Improve hospital discharge pathways
  • Strengthen operational efficiency

Key proposals included:

  • AI-enabled triage systems
  • NHS App navigation tools
  • Digitally coordinated urgent care
  • Expanded community-based treatment
  • Greater use of early intervention models

However, the discussion quickly moved toward the potential risks associated with rapid digital transformation.

Participants concerns:

Representatives covering Hospitals, raised important concerns about how discharge pressures could negatively affect carers.:

“If somebody urgently needs that hospital bed, the pressure becomes getting people discharged quickly. That may not always leave enough time to identify carers properly.”

They stressed that carer identification should happen throughout the patient journey not only during discharge.

They highlighted opportunities for identification during:

  • Outpatient appointments
  • Pre-assessment clinics
  • Routine hospital interactions

Concerns About Digital Poverty

Another major concern involved digital exclusion.

Participants warned that:

  • Older people
  • People with dementia
  • Individuals without smartphones
  • People facing poverty
  • Non-English speakers
  • Neurodivergent individuals

could all struggle if urgent care becomes too dependent on digital systems.

It was mentioned that meeting carers who still rely entirely on phone calls rather than online platforms and stressed the need for alternative accessible routes into care.

Others agreed and referenced an Equality Impact Assessment linked to the NHS 10-Year Plan, which explores risks around digital inequality and vulnerable groups being left behind.

Equalities Impact Assessment – 10 Year Health Plan for England
https://www.gov.uk/government/publications/equalities-impact-assessment-10-year-health-plan-for-england/equalities-impact-assessment-10-year-health-plan-for-england

You can find out more about the UEC below

https://www.england.nhs.uk/publication/urgent-and-emergency-care-plan-2025-26

Carers Week Preparations Across London and Beyond

Many organisations shared updates on activities planned for Carers Week 2026

NHS England

NHS England Carers Week 2026 – ‘Building Carer Friendly Communities’

https://www.events.england.nhs.uk/nhs-england-carers-week-2026-building-carer-friendly-communities

Kingston Carers Network

KCNshared plans for:

  • Benefits advice sessions
  • Afternoon tea events
  • Mental health awareness activities
  • Community picnics
  • Outreach work with carers across Kingston

A major highlight will be the attendance of Sir Ed Davey, who is himself a well-known advocate for unpaid carers due to his own lived experience caring for family members. His involvement is expected to help raise awareness of the challenges carers face daily.

KCN also spoke about Kingston Carers Network’s ongoing efforts to strengthen links with Kingston Hospital. The organisation already receives referrals through the hospital’s carers liaison department, helping unpaid carers access emotional support, information and practical guidance following hospital admissions or discharge.

However, KCN is now trying to expand its presence inside the hospital itself through more direct face-to-face outreach work. Plans are being discussed to establish regular information stands within hospital settings so carers can receive support earlier and more proactively.

KCN explained that while these conversations are progressing, coordinating regular in-hospital outreach remains challenging due to logistical pressures and scheduling issues. Despite this, the organisation continues to work closely with hospital teams to improve visibility and engagement with carers.

Beyond hospital settings, Kingston Carers Network continues to deliver several outreach programmes throughout the borough. Staff regularly attend local groups, community spaces and events to identify carers who may not realise support is available to them.

North Central London Carers Support Project

Eleanor updated the group on work taking place across:

  • Barnet
  • Camden
  • Enfield
  • Haringey
  • Islington

The project works in partnership with multiple NHS trusts and carers organisations across North Central London with the aim of creating a more consistent and coordinated approach to identifying and supporting unpaid carers.

At the centre of the programme is the development of a standard operating procedure for carers within hospitals and healthcare settings. The goal is to ensure carers are recognised earlier, referred more efficiently and supported more consistently regardless of which hospital or borough they engage with.

One of the project’s biggest developments has been the creation of a dedicated carers referral website. Eleanor explained that the system is designed to simplify the referral process for healthcare professionals. When a referral is submitted through the portal, the system automatically directs the carer to the appropriate local carers organisation based on their postcode.

The intention is to remove confusion for hospital staff while helping carers access support much faster.

Eleanor described the project as an effort to make support pathways:

  • Easier for professionals to navigate
  • More accessible for carers
  • Better integrated across borough boundaries
  • Less dependent on individual staff knowledge

A major focus of the project continues to be embedding carer awareness into everyday hospital practice.

Carer Awareness Training Expanding Across Hospitals

The team has made significant progress with carer awareness training sessions delivered across several NHS trusts.

Regular drop-in training sessions are now taking place with:

  • The Whittington Trust
  • The Royal Free
  • North London Mental Health Trust services

Eleanor shared that attendance at some sessions has now exceeded 40 healthcare staff members, which she described as a major success.

The training focuses on:

  • Identifying unpaid carers earlier
  • Understanding carers’ rights and needs
  • Improving referral pathways
  • Increasing staff confidence when supporting carers
  • Embedding carer recognition into routine clinical practice

Importantly, the project measures the effectiveness of these sessions using confidence ratings before and after training. Eleanor reported that most staff attending show at least a one- or two-level increase in confidence around identifying and supporting carers after participating.

North Central London’s Focus on Carers Week and Community Engagement

Preparations for Carers Week are also a major priority for the project.

The team plans to host information stalls and awareness events at several hospitals including:

  • The Whittington Hospital
  • University College London Hospital (UCLH)
  • Barnet Hospital

These events aim to:

  • Raise awareness of unpaid carers
  • Promote available support services
  • Encourage hospital staff to make referrals
  • Help carers connect with local organisations

Lewisham Council Developments

Updates from Lewisham was on the ongoing work taking place across Lewisham to improve support for unpaid carers, particularly through closer collaboration between hospitals, carers organisations and local commissioners.

A major development has been Lewisham Hospital’s involvement in the South East London pilot programme focused on creating a standard operating procedure for carers across NHS trusts. The pilot aims to improve consistency in how carers are identified, supported and referred within hospital settings.

It was explained that Lewisham Hospital has been working closely with Imago, the borough’s commissioned carers support provider, to strengthen partnerships with hospital nursing teams and improve awareness of carers across wards and services.

Particular emphasis is now being placed on:

  • Increasing carer awareness training
  • Improving communication between services
  • Embedding carer identification into routine hospital practice
  • Strengthening links between healthcare and community support

Inspired by discussions during the meeting, it was also highlighted plans to explore integrating carer identification into regular auditing and review processes within hospital settings similar to initiatives already underway in other trusts.

Redesigning Lewisham’s Future Carers Service

One of the most significant updates involved the redesign of Lewisham’s carers support service model.

They shared that the current commissioned contract for carers services is due to end in January 2027, and work is already underway to shape the next phase of support provision.

Importantly, unpaid carers themselves are playing a central role in developing the new model.

A series of co-production sessions has been held with carers across the borough to ensure their lived experiences directly influence future service design. These discussions are helping shape priorities around:

  • Access to support
  • Communication with carers
  • Outreach and identification
  • Emotional wellbeing services
  • Practical support needs
  • Hospital discharge experiences

The borough hopes to move into procurement for the redesigned service later this year.

Carers Hub Lambeth

Carers Hub Lambeth shared an update on the organisation’s ongoing work supporting unpaid carers across King’s College Hospital and Guy’s and St Thomas’ NHS Foundation Trusts.

Although the current hospital carers project funding has been extended for an additional six months, Jen explained that the programme is now approaching its final phase, with funding currently due to end in September 2026.

As a result, the team’s main focus is now on ensuring hospitals become as self-sufficient as possible in identifying and supporting carers once the dedicated project ends.

Expanding Carer Awareness Training

A major priority for Lambeth Carers Hub is expanding carer awareness training for healthcare professionals.

It was explained that the organisation has:

  • Increased training sessions from once to twice monthly
  • Begun arranging bespoke sessions with individual hospital teams
  • Expanded engagement with primary care networks
  • Updated training materials to address barriers to carer identification

The training aims to help healthcare staff:

  • Recognise unpaid carers earlier
  • Understand carers’ support needs
  • Improve referral pathways
  • Build confidence in conversations with carers
  • Embed carers into routine healthcare practice

Carers Hub Lambeth acknowledged that while training sessions often generate an immediate increase in referrals, maintaining long-term momentum remains challenging.

It was mentioned that a familiar pattern where professionals attend training, referrals increase temporarily, and then gradually reduce again as competing clinical pressures take over.

Because of this, the organisation is now trying to better understand:

  • Why carers continue to be missed
  • What barriers staff face in identifying carers
  • How carer awareness can become part of everyday practice rather than an additional task

This reflects a wider challenge discussed throughout the meeting — ensuring carer support becomes embedded within healthcare systems rather than dependent on individual staff enthusiasm.

Embedding Carer Recognition Into Everyday Hospital Practice

One of the most practical discussions came from GESH update on integrating carers into routine hospital auditing processes.

St George’s and Epsom and St Helier Hospitals are now:

  • Adding carer identification questions into ward audits
  • Including carers within routine quality checks
  • Training volunteers to identify carers on wards
  • Embedding carers into “business as usual” practice

Wendy also spoke extensively about the NHS “Reasonable Adjustments Digital Flag,” a major NHS initiative designed to ensure patients’ accessibility needs are recognised across services.

The system aims to help hospitals and GP services better identify:

  • Communication needs
  • Disabilities
  • Neurodivergence
  • Mental health conditions
  • Carer-related support needs

The long-term goal is for healthcare systems to automatically recognise and share reasonable adjustment requirements across services.

Final Reflections

The meeting demonstrated both optimism and concern about the future direction of health and social care.

There was strong agreement that:

  • Community-based care is necessary
  • Earlier intervention can prevent hospital admissions
  • Carers must be identified earlier
  • Digital systems offer opportunities

However, participants repeatedly stressed that healthcare transformation must not leave vulnerable people behind.

Carers remain central to safe discharge, patient wellbeing and long-term community support. As NHS services increasingly move toward digital and community-led models, ensuring carers are recognised, supported and included will remain critical.

The next Carers Hospital Discharge Group meeting is expected to take place in July 2026.

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.

What the new London Assembly carers report really means for unpaid carers

This week as of this blog post, the London Assembly published a major new report on unpaid carers: “London’s unpaid carers: Caring for the carers.”

I had the opportunity to contribute to this work as a carer and advocate, alongside others who shared their lived experience. Seeing those voices reflected in the final report is both encouraging and a reminder of how much still needs to change for unpaid carers in London.

👉 Read the full report:
https://www.london.gov.uk/who-we-are/what-london-assembly-does/london-assembly-work/london-assembly-publications/economy-culture-and-skills-report-londons-unpaid-carers

👉 Carers UK press release:
https://www.carersuk.org/news-and-campaigns/press-releases/new-report-from-the-london-assembly-economy-culture-and-skills-committee-calls-for-more-financial-support-for-londons-unpaid-carers/

The reality: carers are still “hidden”

One of the strongest messages in the report is that many unpaid carers are still not identified.

Too often, people caring for a partner, parent, or child don’t even realise they are classed as a “carer” which means they miss out on financial support, services, and basic recognition.

From my own experience, and what was shared at the Assembly, this is especially true for:

  • Mental health carers
  • Carers from ethnic minority backgrounds
  • Indentification of unpaid carers

If you’re not identified, I feel you don’t exist in the system.

Financial pressure is a major issue

The report possibly confirms what many carers already know:

  • Nearly 1 in 3 carers in London are living in poverty
  • Carer’s Allowance is not enough to live on
  • Many carers have to reduce work or leave employment entirely

There are positive recommendations here like reviewing Carer’s Allowance and reducing travel costs, but these need to turn into real change, not just policy discussions.

Support isn’t working as it should

Another issue raised in the report and something I spoke about is that support often feels like a “tick-box exercise”.

Carers go through assessments, but:

  • Support is limited
  • Funding is inconsistent
  • Real help (like respite care) is hard to access, especially for mental health carers, I mean what does respite actually mean for mental health unpaid carers?

Identification alone isn’t enough. I think It has to lead to meaningful, practical support.

So what needs to happen next?

The report makes some important recommendations:

  • Better identification of carers across London
  • More funding for local carer services
  • Changes to Carer’s Allowance
  • Improved workplace support
  • and a lot more, but you would have to go through the report.

But the key question now is: will this actually be implemented?

Carers don’t need more recognition alone we need action.

Final thoughts

Unpaid carers are holding up the health and social care system every single day.

This report is a very important step forward. But it should be the beginning of change not the end of the conversation.

If you are a carer, or know someone who is, I’d encourage you to read the report and share your experiences. The more visible carers are, the harder it is for the system to ignore us.

Involve Kent Carers’ Forum – 25th February 2026

By Matthew McKenzie

On 25th February 2026, I had the privilege of speaking at the Carers’ Forum hosted by Involve Kent.

Involve is a voluntary sector infrastructure organisation in Kent that supports unpaid carers by providing information, advice and practical help to make caring more manageable.

They organise regular carers’ forums and events where carers can meet each other, access specialist support services, hear from guest speakers on issues like benefits, legal rights and wellbeing, and contribute their lived experience to local planning and decision-making. Involve also connects carers with tailored resources, signposts to relevant services across health, social care and community sectors, and advocates for carers’ voices to be heard by policymakers and service providers

The forum ran from 10:30am to 1:30pm and brought together unpaid carers from across Kent to connect, learn and have their voices heard.

It was my second time speaking at this forum, and once again I was struck by something powerful: the room was full. That might sound simple, but in the world of unpaid caring which can often feel isolating and invisible a full room means solidarity. It means people are choosing, despite exhaustion and competing demands, to show up for themselves and each other.

Arriving and the atmosphere

From the moment I walked in, there was a real sense of warmth. Information stands lined the hall Involve, Citizens Advice, mental health services, energy advice, leisure services and more. Tables were covered in leaflets, conversations were already flowing, and carers were reconnecting with familiar faces.

The purpose of the forum was clear:

To enable those caring unpaid for an adult family member, partner or friend to meet, gain information about services in their community and have their voices heard .

That last part to have their voices heard is what resonated most with me.

It was also good to see Carer leads from Cygnet Maidstone engaging with carers in the community of Kent.

My talk: Caring for someone with a mental health diagnosis

I spoke about caring for someone with a mental health diagnosis and the Patient and Carer Race Equality Framework .

As many know, I cared for my mother who lived with schizophrenia, and I now support a close friend who lives with personality disorder and addiction challenges. I don’t speak as a clinician. I spoke as someone who has sat in GP waiting rooms, on inpatient wards, in crisis meetings, and at home during those “screaming silences” that carers know too well.

I shared:

  • The confusion I felt when I didn’t even realise I was a “carer”
  • The frustration of confidentiality barriers
  • The loneliness of not being listened to
  • The emotional exhaustion that comes from constantly firefighting crises

I then shared a poem to promote carers rights

But I also shared something equally important: growth, advocacy and solidarity.

I encouraged carers to:

  • Educate themselves about the condition they are supporting
  • Learn the difference between symptoms and personality
  • Understand triggers
  • Forgive themselves for mistakes
  • And most importantly, look after their own wellbeing

One message I always return to was – You cannot pour from an empty cup.

I also spoke about The Patient Carer Race Equality Framework

It exists because there is clear evidence of:

  • Disproportionate detentions under the Mental Health Act
  • Poorer outcomes for Black and minority ethnic patients
  • Higher levels of distrust between communities and services
  • Carers feeling unheard or excluded

I spoke about how minority carers can face:

  • Cultural misunderstandings
  • Language barriers
  • Stigma around mental health within communities
  • Fear of services due to past discrimination
  • A lack of culturally appropriate support

Discussion tables: Carers influencing change

After my talk, Clara from Involve led discussions feeding into Kent’s Health Needs Assessment for carers. Carers were asked:

  • How do you recognise when it’s time to ask for help?
  • What causes burnout?
  • What would a carer-friendly community look like?

These wete not token questions. Staff took notes (without identifying details) so carers’ lived experiences could directly inform local planning .

I moved around the room speaking with carers. Some were open and vocal. Others were quieter, but their listening was just as powerful. Not everyone wants to speak publicly and that’s okay. Being present is also participation too.

Power of Attorney – protecting your voice

Later in the morning, Glen Miles spoke about the Mental Capacity Act and Lasting Power of Attorney .

As carers, we often assume we will automatically be consulted in crises. The reality is different. Without legal authority, our ability to advocate can be limited.

One key takeaway:

  • Don’t delay in arranging Lasting Powers of Attorney.
  • If you want your voice – or your loved one’s voice – to be heard, formalise it.

For carers who have experienced being excluded from decisions, this was a particularly important session.

Citizens Advice & practical support

Ian from Citizens Advice spoke before lunch about benefits, debt, housing and confidential support .

With the cost of living crisis, carers are under immense financial pressure. Many reduce employment hours or leave work entirely. The session was a reminder that:

  • Advice is free
  • It is confidential
  • You can attend anonymously
  • You are not judged

Lunch followed – catered by Fusion – and honestly, some of the most meaningful conversations happen over sandwiches. Carers swapping stories. Sharing phone numbers. Recommending services. That peer-to-peer support is priceless.

What stayed with me

What stayed with me most wasn’t just the agenda or the presentations.

It was:

  • The older carer quietly nodding as I spoke about emotional exhaustion.
  • The new carer asking, “Is it normal to feel this angry sometimes?”
  • The male carers who stayed behind to speak to me privately.
  • The carers from minority backgrounds who spoke about cultural barriers and stigma.

These forums matter because carers matter.

Unpaid carers save the system billions. But beyond economics, we hold families together. We absorb crises. We advocate in rooms where we’re not always welcomed.

Involve Kent (Carers’ Support – West Kent)

Address:
30 Turkey Court, Turkey Mill, Ashford Road, Maidstone, Kent, ME14 5PP

Telephone: 03000 810 005
General email: hello@involvekent.org.uk
Carers support contact: communitynavigation@involvekent.org.uk
Website: http://www.involvekent.org.uk

Triangle of Care Community Meeting: December 2025 update

By Matthew McKenzie – TOC Community Chair

Our final Triangle of Care (ToC) Community Group meeting of the year brought together carers, professionals, and ToC members from across the UK to share updates, raise concerns, and discuss priorities for 2026 and beyond. Although Microsoft Teams provided some surprises, we made it work, thanks to teamwork and patience. The conversation was rich, heartfelt, and often very moving.

1. Opening & Agenda

As chair of the meeting, I acknowledged technical teething problems as the group used Teams for the first time in this format. Mary (ToC Programme Lead) welcomed attendees and explained the privacy-driven decision to hide email addresses, which also unfortunately hid attendees’ names. A fix will be implemented before the January meeting.

The agenda included:

  • Triangle of Care national updates (Mary)
  • Carer co-production and lived experience input (Matthew)
  • Surrey & Borders’ co-production example (postponed)
  • Research priority-setting presentation (Richard, University of Manchester)
  • Carer questions and discussion

2. Triangle of Care National Update (Mary)

Mary provided a comprehensive end-of-year update structured around ToC’s three priority areas for 2024–25.

2.1 Embedding the Relaunched Triangle of Care Framework

Growth & progress

  • 16 new members have joined the scheme since April, bringing ToC membership to over 80.
  • The first Welsh hospital achieved a ToC Star Award, prompting the creation of a new Welsh-language logo and Welsh materials.
  • A social care pilot is underway with Livewell South West, with West Hertfordshire Teaching Hospital reviewing ToC criteria for an acute setting.
  • Nine Star Awards have been achieved this year, with a further 12 annual reviews approved. Many more annual reports are pending review before year-end.

Standardising data
Mary emphasised the push for consistent reporting across Trusts, including:

  • numbers of carers identified
  • uptake of carer awareness training
  • numbers of carer champions

This will help build a national picture of impact.

Webinars
ToC’s Lunch & Learn series continues, with the recent Carers Rights Day webinar (in partnership with University of Bristol) focusing on the Nearest Relative role under the Mental Health Act (MHA). Resources are available via Carers Trust’s YouTube channel.

2.2 Young Carers: Identification & Support

A major update was the successful national policy win relating to young carers and the Mental Health Act.

Mental Health Act Reform – Safety Net for Young Carers

Following campaigning by Carers Trust, the Young Carers Alliance, and ToC members who wrote to MPs:

  • Government has agreed to update the MHA Code of Practice to require:
    • identification of children when an adult is detained
    • sharing of information about available support
    • referrals for young carer needs assessments
  • Updates to advance choice documents will require practitioners to ask about dependent children.
  • Expected implementation: Summer 2026.

This win was warmly welcomed by the group.

2.3 Racially Minoritised Carers & PCREF

Mary updated members on ToC’s work to ensure carers are fully represented in the Patient & Carer Race Equality Framework (PCREF).

Key updates

  • A national Task & Finish Group has now completed its review of the first four ToC standards; the final standard is underway.
  • Piloting of new culturally sensitive criteria is planned with 10 NHS Trusts beginning April 2026.
  • Example of early good practice: Livewell South West is implementing a new “essential data template” that includes carers, enabling services to better identify and support racially minoritised carers.
  • Carers Trust is calling for a statutory duty for NHS mental health providers to implement PCREF in full, including community governance.

2.4 Changing the Narrative on Care – New Research

Mary introduced new research (supported by the Health Foundation and Oxfam GB) titled Changing the Narrative on Care, highlighting:

  • Although 80% of the public value unpaid care, this does not translate into policy action or investment.
  • Three recommended reframes:
    1. Care is a universal experience, not a niche issue.
    2. No care without support, make support visible and tangible.
    3. Care is a partnership between families, communities and systems—not something families must do alone.

The full report is available on Carers Trust’s website.

3. Carer Involvement, Co-Production & Lived Experience (Matthew McKenzie)

I then presented an in-depth reflection on the value of authentic carer involvement, drawing on his lived experience and his role working with multiple NHS organisations.

Key points included:

  • Carers are not passive observers, they hold critical lived knowledge that improves services.
  • Real co-production goes beyond consultation; carers must be equal partners in shaping policy, documentation, training, and strategic decisions.
  • Examples Matthew gave from his own involvement:
    • redesigning welcome packs and leaflets
    • addressing confidentiality misapplication
    • involvement in recruitment panels
    • delivering training to staff at induction
    • reviewing complaints and compliments themes
    • advising on discharge processes and family-inclusive safety protocols
    • participating in research steering groups
  • Carers’ insight is especially essential in safeguarding, quality boards, and identifying service gaps often invisible to professionals.

4. Surrey & Borders Co-Production Example

A planned presentation from Surrey & Borders was postponed, as the relevant colleague could not attend with materials. They hope to present at a future meeting.

5. Research Priority Setting in Secure & Forensic Mental Health (Richard Kears)

Richard introduced a national project with the James Lind Alliance (JLA) aiming to identify the top 10 research priorities for secure and forensic mental health services across England, Scotland and Wales.

Who is the survey for?

  • Carers
  • People with lived experience of secure/forensic services
  • Staff working in these services
  • Anyone indirectly connected (victims, families)

Purpose

To ensure future mental health research is led by the real concerns of those most affected, not only by academics or pharmaceutical interests.

Process

  1. National survey gathering research questions.
  2. Analysis to identify common themes.
  3. Second, more focused survey to refine priorities.
  4. National workshops with carers, staff and people with lived experience to finalise the top 10.

A QR code and flyer were shared for distribution. The group expressed strong support.

6. Attendee Discussion & Questions

This was the richest section of the meeting, with many heartfelt contributions. The themes below reflect the key concerns raised.

6.1 Scotland & UK-wide ToC Alignment

A carer asked why Scotland’s ToC framework is separate and not integrated into the UK ToC accreditation model.
Mary explained:

  • Scotland currently uses ToC only as a free policy framework.
  • Implementing the accreditation model in Scotland would require groundwork to assess willingness and ability of providers to fund membership.
  • Integration is being discussed but is not imminent.

6.2 Clarity on Co-Production

Several carers voiced concerns that:

  • “Co-production” is often used as a buzzword.
  • Some NHS Trusts label work as co-produced after completing it.
  • Carers need clarity on what ToC means when using the term.

Mary responded that ToC uses a ladder of engagement, distinguishing:

  • carer engagement
  • carer involvement
  • full co-production

Carers Trust is developing a formal principles-based statement on involvement for future meetings.

6.3 Older Carers: Visibility, Support & Inequalities

The majority of carer questions focused on the unmet needs of older adult carers, many of whom are supporting people with severe mental illness—not dementia—and often have been caring 20–40 years.

Attendees reported:

  • Feeling “invisible” within both policy and services.
  • Being incorrectly grouped under “older carers = dementia”.
  • Their own poor health affecting their caring ability.
  • Increasing struggle to get responses from professionals.
  • Serious concerns about who will care for their loved ones when they die.
  • Feeling less heard as they age, compared with younger carers or newer voices.

One carer (age 78) shared:

“I can’t retire from caring. Benefits stop at 65, but the caring doesn’t.”

Another said:

“We have to shout louder as older women to be heard—and still we aren’t.”

Mary acknowledged the seriousness of these issues and committed to:

  • bringing older carers’ concerns into ongoing ToC work
  • exploring dedicated guidance and better mainstreaming within the ToC standards
  • sharing good practice on carer contingency planning in upcoming meetings

I have placed the guide below

Click to access Carer-Contingency-Planning-in-the-Universal-Care-Plan-Guidance-V1.0.pdf

I also reiterated the group’s role in surfacing policy gaps and influencing future national lobbying.

6.4 Carer Registration & Meeting Access

Several carers raised issues with:

  • The length of the ToC sign-up form
  • Not receiving meeting links despite signing up
  • Verification barriers when joining Teams

Mary agreed to:

  • review and shorten the form
  • clarify which fields are optional
  • address email deliverability issues
  • adjust MS Teams settings to reduce joining friction while maintaining security

6.5 Concerns About Confidentiality Misuse

One carer reported that in a CQC meeting at an NHS Trust, raising questions about communication was dismissed as “confidentiality”, preventing meaningful dialogue.
I then encouraged carers to bring such examples into:

  • ToC Star peer reviews
  • Carer involvement forums
  • Local advocacy routes

He noted that misuse of confidentiality is a common and unacceptable barrier and must be challenged.

6.6 Petition on Antipsychotic Medication Research

Carers highlighted concerns about:

  • long-term prescribing of antipsychotics
  • lack of regular medication review
  • inadequate research into long-term effects

A carer shared a petition calling for investigation of psychiatric medications. Richard noted that he had signed and shared it previously.

7. Closing Remarks

Matthew thanked all attendees for their honesty, passion and persistence:

“Carers’ voices shape policies and improve care. That is exactly what this group is here to do.”

Mary acknowledged:

  • the importance of every concern raised
  • the need to better support older carers
  • improvements to ToC communications and meeting accessibility
  • that the next meeting will be in January (provisionally 19th)

The meeting closed with gratitude from carers who said they felt heard, supported, and connected.

November 2025 Carers News — New Release from A Caring Mind

Welcome to the latest edition of my unpaid carer newsletter for November
This month’s release is full of insights, stories and resources to support carers across the UK.

Read the full newsletter here:
🔗 November Edition of A Caring Mind News

🔥 5 Hot News Stories & Must-Reads in This Issue

1. Carers Rights Day 2025 — What You Need to Know

A clear rundown of carers’ legal rights, financial support, and where to get free advice this year.

Carers Rights Day 2025 – “Know Your Rights, Use Your Rights!” – Carers Trust

It’s Time to Talk Differently about Unpaid Care – Carers Trust

The cost of caring – the impact of caring across carers’ lives

University contributes to national initiative supporting young adult carers

2. New Research on the Mental Health of Unpaid Carers

A powerful new study highlights the emotional and physical toll of long-term caring, plus steps carers can take to protect their wellbeing.

Carers and empowerment in the UK: a critical reflection

Judgements about carer assessments for carers of people with dementia: case vignette study 

3. Tech Support for Carers: Free Tools You Can Use

This month we feature free digital tools and apps that help with scheduling, wellbeing tracking, and managing complex care tasks.

Using TEC to support unpaid or informal carers webinar – Derbyshire Carers

How Technology Helps Carers in 2025 – Apps, AI & Smart Tools Explained

4. The focus on Patient Carer Race Equality Framework

Ethnic and minority carer information and updates

Race equity in mental health: the systemic, legislative change we need

Hampshire & Isle of Wight Healthcare – “NHS Trust launches bold Anti-Racist Action Plan to tackle inequality and discrimination”

Hope, progress, and accountability: Tackling racial inequalities in mental health together – NHS England

An Afternoon with PCREF – Event

Making Time for Black Mental Health: A Black Male Carer’s Reflection

5. Inspirational Reads: Books & Resources That Lift the Spirit

From lived-experience stories to practical guides, we spotlight the best reads for empowering carers during the winter months.

Also in This Issue

  • My brand-new audiobook, The Poetry Book of Mental Health Caring, featuring poems written by unpaid carers across the UK
  • Upcoming events, workshops and support groups
  • Community stories and reflections

Read the full November edition here:
🔗 https://mailchi.mp/f8473b2dac00/carer-news-from-a-caring-mind-12848380

Carers Rights Day 2025 – “Know Your Rights, Use Your Rights”

By Matthew McKenzie – Volunteer of Carers UK

On this year’s Carers Rights Day 2025 (Thursday 20 November), the theme is “Know your rights, use your rights.”

If you care for someone, whether it’s a partner, parent, child or friend; you may be missing out on vital support simply because you didn’t realise you have rights as a carer.

In my new video I walk you through what those rights actually are, and how you can use them in practice.

In this video you’ll discover:

  • Why recognising yourself as a carer matters
  • Key rights every carer should know (from assessments to flexible working)
  • How to make use of those rights in your daily life
  • Where to go for help, guidance and support

Click the link, take two minutes, and empower yourself today.

The Digital Revolution in Unpaid Care: Empowering Carers Through Technology

From Matthew McKenzie carer activist

For Unpaid carers those who support loved ones living with long-term physical or mental health conditions, they face a unique set of challenges. The role is often demanding, emotionally taxing, and can feel isolating. Yet, in recent years, the rapid advancement of digital tools, apps, and online platforms has begun to transform the landscape of unpaid care, offering new avenues for support, organization, and connection.

My blog is a short transcript of my longer video below

Drawing from the lived experience as a passionate advocate for unpaid carers and an IT professional, my article and video explores how digitization, artificial intelligence, and mobile technology are reshaping the way informal carers manage their responsibilities. We’ll delve into the practical benefits, the most useful apps, and the limitations of technology in the caring role, providing a comprehensive guide for carers seeking to harness digital tools for their own well-being and the well-being of those they support.

Understanding the Role of Technology in Unpaid Care

The Growing Demands on Carers

Unpaid carers often juggle multiple responsibilities: managing medication schedules, tracking symptoms, coordinating appointments, and advocating for their loved ones with health professionals. The emotional and cognitive load can be overwhelming, especially when combined with work, family, and personal commitments.

As I points out, “As humans, we can only remember things so often. So, especially when we’re getting older or if we are under a lot of stress trying to juggle our caring role and busy lives, it does help to have apps that can schedule these things.”

The Promise of Digitization

Digitization offers carers a “second brain”, a way to offload tasks, reminders, and information, reducing stress and mental clutter. Mobile phones, now more powerful than ever, serve as hubs for health management, communication, and emotional support. But while technology can be transformative, it’s not without its challenges, including digital literacy, access, and the irreplaceable of value of human connection.

The Future of Care: Technology as an Empowering Force

The digital revolution is reshaping unpaid care, offering carers new ways to manage responsibilities, connect with others, and support their own well-being. While technology is not a replacement, it can be a powerful ally, reducing stress, improving organization, and fostering community.

As my experience shows, embracing digital tools can transform the caring journey. By leveraging apps for health management, communication, and emotional support, carers can reclaim control, reduce isolation, and find new sources of strength.

Ultimately, the goal is not to replace human kindness or connection, but to empower carers with the tools they need to thrive. With thoughtful adoption and ongoing support, technology can help unpaid carers navigate the challenges of their role and build a brighter, more connected future.

Resources and Recommendations my video covers

Essential Apps for Carers

  • Pill Reminder: Medication management and alerts
  • Medsafe: Medication tracking and scheduling
  • NHS App: Health records, care plans, and feedback (UK)
  • Google Calendar / Microsoft Outlook: Appointment and routine management
  • To-Do List / Trello: Task organization
  • Zoom / Microsoft Teams / Google Chat: Virtual support groups and communication
  • Siri / Google Assistant: Voice commands and reminders
  • AI Journals / Well-being Apps: Emotional support and mindfulness

Tips for Safe and Effective Use

  • Choose reputable apps with strong privacy policies
  • Keep software updated to ensure security
  • Seek training or support if you’re new to digital tools
  • Balance online and offline support for holistic well-being

Conclusion

Unpaid carers are the unsung heroes of our communities, providing vital support to those living with long-term ill health. The rise of digital tools and technology offers new hope, making the caring role more manageable, less isolating, and more connected.

By embracing digitization, carers can streamline their responsibilities, access emotional support, and build resilient communities. While challenges remain, the future of care is bright, powered by technology and the enduring spirit of human kindness.

Lewisham, Southwark & Lambeth carer forum update September 2025

By Matthew McKenzie – Carer activist and facilitator of the group

The group is a community of carers in Lambeth, Southwark and Lewisham that exists to provide support, advocacy, and connection for people looking after loved ones living with mental illness. It brings together unpaid carers of all ages and backgrounds to share experiences, learn from one another, and build confidence in dealing with health and social care professionals. A core part of its mission is reducing isolation by creating a safe space where carers can speak openly, develop skills, and access practical resources like advocacy services.

The meeting began with introductions and updates from various participants, including myselff where I discussed work with London Hospitals and the NHS app, while other carers introduced themselves to the group. In attendance was Tama from PohWer presented information about carer complaints and support services across different regions, including discussions about the potential impact of Healthwatch’s dissolution on patient and carer support services.

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