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.

Lewisham, Southwark & Lambeth carer forum update May 2026

Update by Matthew McKenzie – Chair of South London Mental Health Carers Forum

The South London Mental Health Carers Group met for the month of May for a wide-ranging and thoughtful discussion covering carers’ experiences, mental health support systems, involvement opportunities, and an important research presentation focused on support networks and long-term care.

The group covers areas of Lewisham, Southwark, Lambeth & Croydon, although Mental Health Carers from outside those areas are welcime to attend

The session brought together carers, advocates, involvement leads, and guest speaker Dr Anna De Simone from Queen Mary University of London. As always, the discussion highlighted both the challenges carers continue to face and the value of shared lived experience and peer support.

Opening Discussions: Challenges in Mental Health Care Systems

The meeting began with carers sharing experiences of navigating mental health services for loved ones with complex needs. There was extensive discussion around:

  • difficulties accessing appropriate placements,
  • safeguarding concerns,
  • discharge planning,
  • lack of continuity between NHS trusts and local authorities,
  • and ongoing challenges around funding responsibility between different services.

A recurring issue raised was the pressure on inpatient beds and the concern that discharge decisions can sometimes feel driven more by system pressures than by clinical readiness. Carers spoke openly about the emotional impact of repeatedly having to advocate for vulnerable loved ones while navigating fragmented systems.

There was also discussion around the importance of carers being recognised and included in communication and planning processes. Participants highlighted how carers are often the people most aware of deterioration, risks, or safeguarding concerns, and how vital it is that services engage meaningfully with families and informal supporters where appropriate.

Despite frustrations, carers also acknowledged examples of good practice and supportive professionals within mental health services. Several attendees noted that they had seen gradual improvements in carer involvement and listening exercises within parts of South London and Maudsley NHS Foundation Trust (SLAM), particularly in Lambeth.

Updates on Carer Involvement and Support Activities

The group received updates from carers and representatives involved in local mental health engagement work and carers’ organisations.

Carers Week Activities

Karen from Carers Hub Lambeth shared details of upcoming Carers Week activities, including:

  • outreach events,
  • wellbeing sessions,
  • information stalls,
  • and activities for both adult and young carers.

The events aim to provide carers with opportunities for support, networking, practical advice, and wellbeing activities.

Here is more info on Carers Week 2026

https://www.carersweek.org/about-carers-week/latest-news/posts-folder/2026/january/carers-week-dates-for-2026

SLAM and Carer Involvement

There was also discussion around changes and developments within SLAM involvement structures, including:

  • continuation of family and carers meetings,
  • changes to involvement leads,
  • and ongoing reviews of the involvement register.

Attendees reflected positively on the increasing recognition of carers’ voices in some forums and clinical meetings, while acknowledging that there is still much work to do to ensure consistent involvement across all boroughs and services.

Guest Presentation: Mapping Patient Support Networks

The second half of the meeting focused on a presentation from Dr Anna De Simone, GP and Associate Professor of Primary Care at Queen Mary University of London.

Anna introduced a proposed research project exploring how healthcare systems might better understand and map patients’ support networks using electronic health records and social network tools.

The research proposal focuses particularly on patients with long-term conditions such as COPD (Chronic Obstructive Pulmonary Disease), many of whom also experience multiple additional health conditions and varying levels of social isolation.

The Core Idea

Anna explained that while healthcare professionals can currently access limited information such as next of kin or household members, they often lack a fuller understanding of:

  • who actually supports the patient,
  • how reliable that support is,
  • whether support networks are connected or fragmented,
  • and how socially isolated a patient may be.

The proposed research would explore whether creating visual “maps” of support networks could help:

  • improve care planning,
  • reduce crises,
  • improve coordination between services,
  • and enhance patients’ quality of life.

The project would also examine how social prescribing, community services, online support groups, and carers fit into these wider support networks.

Carers’ Feedback on the Research Proposal

The discussion following Anna’s presentation was extremely rich and constructive, with carers offering both enthusiasm and important cautionary perspectives.

Strong Support for the Concept

Many attendees felt the project addressed an important gap in healthcare planning. Several carers spoke about how informal support networks had been essential to helping them or their loved ones survive periods of crisis.

Participants agreed that professionals often underestimate the role played by:

  • friends,
  • neighbours,
  • online communities,
  • peer groups,
  • and unpaid carers.

The ability to visualise these networks was seen as potentially valuable for both professionals and patients themselves.

Importance of Non-Traditional Support Networks

A strong theme throughout the discussion was that support does not always come from family.

Some carers explained that family relationships can sometimes be unsafe or abusive, and that support may instead come from trusted friends, neighbours, carers’ groups, or online communities.

The group stressed that any future system should avoid assuming that family automatically equals safety or support.

Online Communities and Digital Support

Participants also highlighted the increasing importance of online support systems.

Several carers explained that:

  • Zoom groups,
  • Facebook communities,
  • online peer support,
  • and digital communication
    can provide essential social connection, especially for disabled or isolated people.

One participant noted that online support networks had directly helped them access practical support and reduce isolation when physical mobility was limited.

At the same time, carers cautioned that not everyone has equal access to digital services. Concerns were raised about:

  • digital exclusion,
  • accessibility barriers,
  • lack of digital skills,
  • and the risk of widening inequalities.

The importance of offering both digital and non-digital forms of support was strongly emphasised.

Privacy, Consent, and Mental Health

Carers also discussed potential challenges around privacy and consent, particularly for people experiencing paranoia or severe mental illness.

Some attendees noted that patients may not always feel comfortable sharing details about their social networks, and that trust and safeguarding would need to be central to any future system.

There was discussion about the delicate balance between:

  • confidentiality,
  • safety,
  • carer involvement,
  • and patient autonomy.

Role of Social Prescribers

The group generally agreed that social prescribers could play an important role in helping patients map support networks, because they often have more time and a stronger focus on community support than standard GP appointments allow.

However, concerns were raised about long-term funding and sustainability for social prescribing services.

Looking Ahead

Anna thanked the group for their detailed feedback and explained that carers’ insights would help shape the next stage of the research proposal before submission later this year.

There was strong interest from attendees in remaining involved should the project move forward, particularly around future patient and public involvement opportunities.

The meeting once again demonstrated the depth of knowledge, experience, and expertise held by unpaid carers. The discussion reflected not only the challenges carers continue to face, but also the importance of ensuring carers are recognised as essential partners in both healthcare delivery and future research.

Making Time for Black Mental Health Event – 4th Year Spring Anniversary

I recently attended the “Making Time for Black Mental Health” event hosted by Bella from Think Tenacity Academy CIC at Cottons Caribbean Restaurant in Vauxhall. The event took place on friday 22nd of May 2026

it was a reminder of the importance of safe community spaces that centre Black wellbeing. The event brought together over 100 attendees, including families, carers, advocates, therapists, Plus Healthwatch Southwark, Healthwatch Lambeth, CNWL Talking Therapies Service Westminster, Carers UK, alongside other community organisations supporting mental health awareness and wellbeing.

We were all united around conversations on mental health, lived experience, and reducing stigma within the Black community.

The event was officially opened by Folake Segun, CEO of Healthwatch Lambeth which led on to meaningful conversations, which I have created a video to show highlights of the event.

As a carer advocate, I found the event especially valuable because it highlighted how community-led support can create genuine impact.

The evening included a Q&A session with Black therapists and speakers who openly discussed mental health challenges, cultural understanding, and the importance of representation in support services.

There were also wellness stalls, books, information tables, and opportunities for local organisations to connect directly with the community. Seeing families, children, and professionals all engaging together showed how mental health conversations can become more accessible and less stigmatised when events are designed with inclusion at the centre.

What stood out most to me was the sense of togetherness and intentional care throughout the event. Think Tenacity’s mission to tackle health inequalities and create spaces where Black people feel seen, heard, and supported was evident in every part of the evening. Hosting the event at a vibrant riverside venue with free entry, wellbeing activities, and opportunities to socialise created an environment where people could relax while also engaging in serious and necessary discussions around mental health.

Events like this are essential because they remind us that advocacy, wellbeing, and community support all go hand in hand.

Find out more about Think Tenacity Academy CIC:
Contact: SerenaEventManager@thinktenacity.com

Next event date: 23rd September 2026
https://ThinkTenacity.eventbrite.com

Follow Think Tenacity:
https://www.tiktok.com/@thinktenacity
https://www.instagram.com/thinktenacity
https://www.youtube.com/@ThinkTenacity

Join Healthwatch Bromley for an Open Conversation About Connection

Feeling connected is important especially for those who spend much of their time caring for others. Healthwatch Bromley is hosting a special interactive session designed to explore connection and combat loneliness in our community.

Event Details:

  • Date: Friday 5th June 2026
  • Time: 10:00 – 12:00
  • Location: Bromley United Reformed Church, 20 Widmore Rd, Bromley BR1 1RY
  • Guest Speaker: Helayna Jenkins MBE, IEng
  • Free Registration: Sign up here

What to Expect:

This session will give unpaid carers and community members the chance to:

  • Engage in a thoughtful group discussion about building connections.
  • Learn practical strategies to strengthen relationships and reduce loneliness.
  • Hear insights from guest speaker Helayna Jenkins, who brings experience and inspiration to the conversation.
  • Enjoy light refreshments while connecting with others in similar circumstances.

Whether you’re a carer seeking support, someone looking to expand their social network, or simply interested in meaningful conversations, this event offers an open, welcoming space to share, listen, and grow stronger together.

Don’t miss this opportunity to connect and make a difference in your community. Register for free today and be part of the conversation.

Mental Health Awareness Week 2026 – Take Action

Mental Health Awareness Week 2026 over in the UK runs from Monday 11 to Sunday 17 May, and the theme is Take Action. I know firsthand how challenging it can be to look after someone while managing your own wellbeing.

Mental Health Foundation is the main charity behind Mental Health Awareness Week in the UK, but there are many other important organisations playing key roles in mental health support, advocacy, treatment and public awareness.

So for the week of this blog, it is a reminder that even small steps can make a big difference, whether it’s checking in on a friend, practicing self-care, or seeking support from local and national organisations.

As a reminder Carers often put themselves last, but protecting your own mental health is essential and taking action starts with acknowledging that you deserve support too.

During this Mental Health Awareness Week, there are many organisations and local NHS carer support services provide invaluable guidance, counselling, and resources for unpaid carers.

The theme is “Every action counts”. From reaching out to your community, to joining peer support groups, to simply taking a moment for yourself.

Watch my video above for practical tips, encouragement, and ways to take action for your mental health and the wellbeing of those you care for.

Let’s work together to make mental health a priority for everyone, today and every day.

Additional Resources for Carers and Mental Health Support

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

Mental Health Awareness Month 2026

May is Mental Health Awareness Month 2026 over in the states, with this year’s theme, “More Good Days, Together”, encouraging communities to support mental well-being.

Unpaid carers and family caregivers often face unique challenges, and organizations like Mental Health America, National Alliance for Caregiving, Family Caregiver Alliance, AARP, and the American Association of Caregiving Youth provide valuable resources and guidance.

This month is a reminder that small acts of support and self-care can make a big difference in creating more good days for everyone.

Mental Health & Caregiver Resources (U.S. & UK)

United States

  1. Mental Health America (MHA)
  2. National Alliance for Caregiving (NAC)
  3. Family Caregiver Alliance (FCA)
  4. AARP Caregiving Resources
  5. American Association of Caregiving Youth (AACY)

United Kingdom

  1. Carers UK
  2. Mind (UK Mental Health Charity)
  3. The Mental Health Foundation
  4. Young Carers Action Day / Carers Trust (UK)

Voices & Verses PCREF Carer event

By Matthew McKenzie, Cygnet PCREF Carer Lead

On Tuesday 28th April 2026, from 2:00pm to 4:00pm, we came together at Cygnet Churchill in Lambeth for what was described as a carers poetry event, but in truth, it became something much deeper.

It became a space where carers could speak, reflect, and be heard.

I hosted the session not just as a PCREF Carer Lead, but as someone with lived experience. That shaped everything the tone, the structure, and the intention behind every part of the agenda.

I made it clear: this was a safe, inclusive, and optional space. No pressure to perform. No expectation to share. Just an invitation.

We began with a simple check-in:
“What’s one word you’re arriving with?”

Opening Readings: Creating a Shared Starting Point

I started with a couple of my own poems, drawn from my work around carers, stigma, and racial inequality in mental health.

As shown above, one piece explored the question of who is listened to and who is overlooked within systems. Another focused on stigma and shame, particularly how cultural expectations and institutional barriers can compound the experience of caring.

These weren’t just readings—they were a way of opening the room.
An invitation for others to see themselves reflected.

Featured Performer: Karen Ibrahim

We then heard from Karen Ibrahim, whose poetry captured something deeply familiar to many carers the quiet, often invisible emotional labour of caring.

Her piece reflected the silence between carer and loved one, the fear of saying the wrong thing, and the reality of sitting with someone in distress without always knowing how to help. It spoke to that fragile balance carers hold every day.

Karen also shared a series of haiku-style reflections, drawn from carer experiences—short, powerful snapshots of emotion, nature, and coping. They reminded us that even the smallest expressions can carry deep meaning.

Guided Writing Exercise #1: Bringing PCREF to Life

We then moved into the first guided writing exercise.

I paired participants and asked them to:

  • Match PCREF-related concepts (like equity, advocacy, inclusion, resilience) to their meanings
  • Use those words to create a short poem or reflection

It was about translating PCREF from policy into lived language.

The results were powerful. Carers wrote about 4 poems altogether, below were the themes, which will be included in the new PCREF poetry book I am working on.

  • Feeling unseen and unheard
  • Wanting their voice recognised
  • Breaking down barriers in care
  • Finding strength through community

One group asked:
“Is my voice not loud enough to be heard?”

I felt that line stayed with me, because it captures exactly what PCREF is trying to address.

Performer & Open Mic (Round 1)

We then moved into our first round of performances, where carers shared both prepared and newly written work.

I felt Brenda brought something unique, blending cultural storytelling and poetry rooted in Jamaican heritage. She reflected on traditional knowledge, community wisdom, and the use of language and folklore as a way of preserving identity and healing. Her use of dialect and storytelling highlighted how culture shapes how we express and understand care.

Next was Annette Davis shared a piece centred on the identity of being a carer, capturing the emotional strain, lack of recognition, and inner strength that comes with the role. Her poem questioned what it means to be labelled a “carer” while navigating burnout, resilience, and the need for self-care.

Next up was Faith Smith and Nadine sharing a powerful reflection on system inequality, exploring the daily pressures of navigating services, the lack of accessible support, and the feeling of being caught in processes that don’t always respond to real-life needs.

Each piece added another layer to the conversation, with different perspectives, but shared truths.

Break & Connection

We paused for a short break and refreshments provided by the kind and wonderful staff at cygnet, but for the poetry event the conversations didn’t stop.

Carers continued to connect. Share stories. and reflected on what they had heard.

This is something I always emphasise, community doesn’t just happen in structured sessions. It happens in those in-between moments.

Creative Exercise session #2: Exploring PCREF Language

After the break, I introduced a second exercise, which was more interactive and reflective.

Participants worked with a word-search style challenge, identifying key PCREF-related terms such as:

  • Voice
  • Inclusion
  • Equity
  • Community
  • Trust
  • Advocacy
  • Listening
  • Stereotyping

Rather than writing full poems, we focused on discussion:
Which word stands out and why?

The responses were honest and grounded:

  • “Listening builds trust.”
  • “Community is where we belong.”
  • “Inclusion is what drives change.”
  • “Stereotyping still shapes how we’re treated.”

This is where PCREF becomes real, when people recognise themselves within it.

Performer & Open Mic (Round 2)

We continued with a second round of performances.

Carers shared reflections shaped by:

  • Cultural identity
  • Personal caring journeys
  • The emotional impact of systems
  • Hope, resilience, and change

Then ended with cultural carer songs by Brenda, see the video of part of the PCREF poetry session below.

In the end PCREF is about improving outcomes for racialised communities—but it cannot succeed if it remains purely clinical.

We:

  • Translated PCREF into lived experience
  • Used creativity to engage carers meaningfully
  • Created a culturally responsive space
  • Positioned carers as equal voices not passive participants

If you are caring for someone using Cygnet services, contact Family&Friends@cygnethealth.co.uk to join our Voices & Verses poetry group

Celebrating Black Mental Health: Lewisham IAG Conference at Goldsmiths, University of London

By Matthew McKenzie

On Saturday, 25th April 2026, the Lewisham Independent Advisory Group (IAG) hosted its much-anticipated Black Mental Health Conference at Goldsmiths, University of London, in New Cross, London.

The event ran from 1 PM to 4 PM, bringing together community members, mental health practitioners, activists, and service users for an afternoon of learning, discussion, and networking focused on Black mental health.

Setting the Stage

Upon arrival, attendees were welcomed with a vibrant program booklet and a series of informational stalls showcasing local initiatives and mental health support services.

I hosted the “Triangle of Care / Carers UK” stall, which covered support for mental health carers and referial information for carer support.

These stalls featured a wide range of organizations including SLAM, Kawaida Therapy, Families and Communities, and Mindful Mums, providing both resources and opportunities for engagement. The atmosphere was energetic and welcoming, reflecting the conference’s mission of care, connection, and community change.

List of stall holders at the conference

  1. Lewisham Independent Advisory Group (IAG) – SLAM PCREF & N2C pilots, community engagement initiatives.
  2. Coco Collective – Blood pressure checks and health equity support through an Italian community clinic.
  3. NTCG Lee – BeWell Hub – Mental health support: first aid, signposting, ethnic minority therapy referrals, DWP guidance.
  4. London Fire Service – Provides community safety advice.
  5. Alzheimer’s Society – Support for people with Alzheimer’s and carers, including PCREF / OA partner initiatives.
  6. Age UK – Lewisham & MacMillan – Cancer champion services and social prescribing support (PCREF / OA partner).
  7. IMAGO – Lewisham unpaid carers support.
  8. Triangle of Care – Carer peer mental health support.
  9. Occipital Growth CIC – Wellbeing pop-up services.
  10. S.I.R.G. / Walking Men’s Group – School support and men’s mental health & wellbeing programs.
  11. BASCA Reminiscence – Showcases reminiscence activities and cultural preservation.
  12. Caremark Care Services – Provides care home services.
  13. RMUK (Rastafari Movement UK) – Focused on tackling food injustice, social isolation, and health inequalities.
  14. In One Piece – Hypnotherapy and career pathways for neurodiverse children.
  15. South-East London Mind – Mindful Mum’s – Wellbeing group for mothers.
  16. Lois Project Women’s Health Education Network – Women’s health education programs.
  17. Red Ribbon Living Well Project – HIV wellbeing and support.
  18. LBVN (Lewisham Black Voluntary Network) – Independent network of Black charitable service leaders and social entrepreneurs.
  19. Families in Harmony – Kinship care support services.

Main conference section

The conference was opened by Lloyd Curtis, the MC for the day, who set the tone for an engaging and informative session. Following the introduction, IAG Chairs Michelle Nembhard and Stephen Lawrence presented the work of Lewisham IAG, highlighting their ongoing commitment to addressing disparities in mental health support for the Black community.

Key Sessions and Presentations

The program included several impactful sessions:

  1. Maudsley Charity Update – Alice Casey from the Maudsley Charity delivered an overview of their programs, emphasizing community support and collaboration with local services.
  2. SLAM Anti-Racism Training – Simone Garrison and Jide Ashimi facilitated a session on the delivery of anti-racism training within mental health services, highlighting systemic challenges and practical strategies.
  3. Intercultural Therapeutic Services & LBVN – Beverley Weston and Susan Rowe explored intercultural approaches to therapy, focusing on culturally sensitive practices in mental health care.
  4. A Service Users’ Journey – Katrina Desportes shared insights into the lived experiences of mental health service users, emphasizing the importance of understanding patient perspectives.
  5. Keynote Address: Dr Malcolm Phillips – Kawaida Therapy – Dr Phillips delivered a compelling keynote, exploring strategies for supporting Black mental health, drawing on decades of experience in therapy and community engagement.
  6. Panel Discussion – The conference concluded with a panel discussion featuring Dr Malcolm Phillips, Ade Odunlade, Katrina Desportes, Simone Garrison, Jide Ashimi, and Susan Rowe, providing a platform for dialogue and Q&A with attendees. This interactive session allowed for rich exchanges on best practices, policy challenges, and community-based solutions.

Networking and Community Engagement

After the formal sessions, the event transitioned to food and networking until 4:45 PM, providing attendees an informal space to connect with speakers, organizers, and service providers. The array of stalls allowed participants to take resources, engage with local initiatives, and explore volunteer and support opportunities.

Resources and Takeaways

Attendees left with valuable resources including:

  • Program booklets detailing session schedules and speaker bios.
  • Information on local mental health services and community organizations.
  • Contacts for advocacy, volunteering, and further training.

The conference highlighted the critical importance of community-driven approaches to Black mental health, emphasizing collaboration between service users, charities, and health professionals.

Absolutely! Let’s expand each key session with a more detailed, immersive narrative, based on what attendees experienced, including content, atmosphere, and insights shared. I’ll focus on the sessions you specifically attended, as reflected in the program.

1. Maudsley Charity Update – Alice Casey (1:15 PM – 1:30 PM)

The conference opened with an engaging presentation by Alice Casey from the Maudsley Charity. She provided attendees with a detailed overview of the charity’s initiatives to support mental health within the community, emphasizing collaborative approaches with local organizations.

Alice highlighted key programs, including outreach work for young Black adults, peer mentoring schemes, and community workshops aimed at reducing stigma around mental health. The presentation included personal stories from beneficiaries, which brought an emotional and relatable dimension to the discussion. Attendees appreciated the practical advice on accessing support services and the emphasis on culturally responsive care.

The room was attentive and responsive, with many participants asking thoughtful questions about how local services can be adapted to better meet the needs of diverse communities. This session set the tone for the day: action-oriented, community-centered, and deeply reflective of lived experiences.

2. SLAM Anti-Racism Training Delivery – Simone Garrison & Jide Ashimi (1:35 PM – 1:55 PM)

Next, Simone Garrison and Jide Ashimi led an interactive session on anti-racism training within mental health services. This session was highly participatory, with attendees invited to engage in discussion and reflect on their own experiences of race, discrimination, and systemic barriers.

The presenters outlined how structural racism affects mental health outcomes for Black communities and shared the SLAM model for anti-racism training. This included:

  • Identifying bias in clinical settings
  • Implementing inclusive language and practices
  • Encouraging allyship and peer accountability

One impactful moment was a case study exploring a young Black patient navigating mental health services. Attendees were prompted to consider interventions from multiple perspectives, sparking a dynamic discussion about equity and accessibility. Many participants noted that the session provided practical strategies for advocating within organizations, alongside the theoretical understanding of systemic inequities.

3. Intercultural Therapeutic Services & LBVN – Beverley Weston & Susan Rowe (1:55 PM – 2:10 PM)

Following this, Beverley Weston and Susan Rowe from the Intercultural Therapeutic Services and Lewisham Black Voluntary Network (LBVN) presented a session focused on culturally adapted therapeutic approaches.

They emphasized the importance of recognizing cultural context in therapy, including family dynamics, faith, and community networks. Key highlights included:

  • Techniques for building trust with clients from diverse backgrounds
  • Examples of successful community-led interventions
  • Strategies for bridging gaps between statutory services and local Black-led organizations

The session included audience reflections on how cultural awareness can improve engagement, reduce dropouts, and foster sustainable mental health outcomes. Participants were particularly struck by the emphasis on strength-based approaches, focusing on resilience and community assets rather than deficits.

4. interview with the Interim CEO of SLAM (2:15 PM – 2:30 PM)

This session featured an interview with the Interim CEO Ade Odunlade of (South London and Maudsley NHS Foundation Trust), who spoke about:

  • Organizational vision for equitable mental health services
  • Current initiatives addressing disparities in care for Black communities
  • Collaborations with local groups, including Lewisham IAG and other voluntary networks
  • Commitment to anti-racism training and cultural competency across SLAM services

The interview was informal but informative, giving attendees a direct perspective on how policy and leadership decisions impact service delivery, especially in Black mental health provision. Participants had the opportunity to ask questions and engage with strategic priorities, bridging high-level management insight with the practical experiences discussed in other sessions

5. A Service Users’ Journey – Katrina Desportes (2:35 PM – 2:45 PM)

Katrina Desportes delivered a deeply personal session, sharing her journey as a service user navigating mental health systems. This session was emotionally resonant, offering first-hand insights into the challenges and triumphs of accessing support as a Black individual.

Katrina spoke about the importance of empathy, clear communication, and patient-centered care, illustrating the human impact behind policies and procedures. She also highlighted barriers such as:

  • Misdiagnosis and underrepresentation in mental health services
  • The impact of stigma within families and communities
  • Limited culturally specific support

Attendees responded with empathy and engagement, asking questions about how systems can better integrate service user feedback and what steps can be taken to empower marginalized voices in decision-making processes.

6. Keynote Address: Dr Malcolm Phillips – Kawaida Therapy (2:55 PM – 3:30 PM)

The day’s keynote by Dr Malcolm Phillips was a highlight, delivering a rich discussion on therapeutic practices that support Black mental health. Dr Phillips drew from his extensive experience with Kawaida Therapy, emphasizing holistic, culturally grounded approaches.

Key takeaways included:

  • The significance of community-driven therapy models
  • Integrating African-centered philosophies and traditions into mental health care
  • Addressing intergenerational trauma and systemic inequalities in healthcare

Dr Phillips used case examples, including stories of young people and families, to illustrate practical techniques and the positive outcomes of culturally aware therapy. The audience was deeply engaged, and the session included interactive Q&A, allowing participants to explore issues like accessibility, stigma, and collaborative interventions.

7. Panel Discussion – Dr Malcolm Phillips, Ade Odunlade, Katrina Desportes, Simone Garrison, Jide Ashimi & Susan Rowe (3:30 PM – 4:00 PM)

The conference concluded with a dynamic panel discussion, bringing together speakers from the day to reflect on key themes. The panel tackled questions such as:

  • How can mental health services better serve Black communities?
  • What role does community advocacy play in systemic change?
  • How can lived experience inform service design and delivery?

Panelists emphasized intersectional approaches, acknowledging the compounding effects of race, gender, socioeconomic status, and historical inequities. The discussion was lively and reflective, providing actionable insights for both practitioners and community members.

Reflection

Attending these sessions offered a deep, multifaceted understanding of Black mental health, blending theory, practice, and lived experience. Participants left with:

  • Practical strategies for culturally competent care
  • Greater awareness of systemic barriers and solutions
  • Inspiration to engage with their communities and advocate for equity

The conference successfully balanced education, empowerment, and practical application, making it a landmark event for mental health advocacy in Lewisham.

Conclusion

The Lewisham IAG Black Mental Health Conference successfully combined education, advocacy, and community engagement, creating a meaningful space for dialogue and connection. The event demonstrated that supporting mental health in Black communities requires both systemic change and grassroots collaboration a mission that Lewisham IAG continues to champion.

Triangle of Care Community Meeting: April 2026 update

By Matthew McKenzie – Triangle of care chair

Below is a brief update of the group meeting, which was set as a national engagement space for carers to share experiences and influence Triangle of Care implementation and wider system change

1 “What’s Changed for Carers” Discussion

Carers shared real-world experiences, highlighting both small improvements and ongoing systemic challenges.

2 Triangle of Care Update

Presented by Mary Patel: Update on national progress, including growth in membership, quality improvement work, training, and ongoing efforts to embed carer involvement across services.

Membership growth: Over 90 mental health providers are now members, with new applications from East London Foundation Trust, North London Foundation Trust, and several private providers, demonstrating a steady expansion of the scheme. Quality improvement process: Providers submit annual reports, self-assessments, and evidence for review.

Mary highlighted the STAR award system (STAR 1: inpatient/crisis teams, STAR 2: community teams, STAR 3: additional health services), celebrating recent awards to Leicestershire Partnership Trust (STAR 2) and Merseycare (STAR 3), noting the significant carer involvement in these assessments.

Embedding standards: Triangle of Care standards remain the six core standards developed with carers in 2010, underpinning governance, carer involvement, action planning, culture change, feedback mechanisms, and co-production. Mary emphasised that self-assessment is a reflective improvement tool, not a quality mark. Culture change initiatives: Focus on carer awareness training, senior leadership engagement, and the “golden thread” of carer involvement throughout services. Support for members:

New initiatives include:

  • Community of Practice forum for sharing best practice
  • Online self-assessment training module
  • Ongoing webinars, events (e.g., Young Carers Action Day, Caring Across London)
  • Draft social care guidance and upcoming Triangle of Care + PCRIS pilot

Policy engagement: Mary highlighted alignment with the Care Act 2014, Health and Care Act, and attention to equity, inclusion, and workforce development.

3. Influencing & Accountability (GPs / Commissioners)

This section was led by Matthew McKenzie, with supporting input from Mary Patel. The focus was on moving the group beyond discussion into practical influence and system change, particularly around primary care and commissioning. Matthew outlined the intention for the community group to act as a bridge between carers’ lived experience and decision-makers, identifying key issues raised by carers (especially around GP services and discharge pathways) and using the group to bring in external stakeholders such as GPs, commissioners, and national bodies.

4. NHS England – Modern Service Framework

This section was presented by Anne Heneghan from NHS England. She provided an in-depth overview of the 10-year Modern Service Framework for Severe Mental Illness, describing it as a “moonshot” designed to improve outcomes for people with severe mental illness by 2035. The framework focuses on three overarching pillars: improving health and wellbeing (including reducing physical health inequalities), delivering high-quality, person-centred, and integrated care, and supporting independence and social inclusion through housing, employment, education, and community connections.

Anne highlighted that integration across services is central, bringing together mental health, primary care, social care, the voluntary sector, and justice system interfaces. A key focus is co-production, with people with lived experience and carers involved in shaping interventions, standards, and service delivery. She explained that the work has moved into a call for evidence phase, inviting stakeholders, including carers to provide input on the interventions and best practices that should form the core of the framework.

Anne also addressed ongoing systemic challenges: there is currently no confirmed new funding, workforce pressures are high, and fragmentation between health, social care, and primary care persists. She stressed the framework’s role in tackling inequalities, including racial disparities in care and outcomes, and ensuring that carers’ perspectives are central to the design of services. Anne outlined the phased approach, including stakeholder engagement, evidence review, intervention prioritisation, and eventual quality standards development for three care settings: community, crisis/urgent care, and inpatient care. She emphasised that the framework is designed to be ambitious, evidence-based, and flexible, with iterative updates over the next decade to reflect learning and emerging best practice.

Questions from carers:

  • What happens if political priorities or government structures change during the 10-year plan?
  • Will additional funding be allocated to support these interventions?
  • How will integration between NHS, social care, and other sectors be achieved in practice?
  • How will carers be consistently involved throughout the framework’s delivery?
  • What mechanisms will ensure long-term accountability and follow-through?
  • How will racial and other inequalities be addressed, including treatment disparities?

Carer Peer Support (Guest Speaker)

This section was led by a carer, who shared a practical, grassroots example of setting up and sustaining a carer-led peer support group in Bristol. She described how the group evolved from a time-limited programme with Rethink Mental Illness into an independent, ongoing support network run entirely by carers. The group meets monthly, is built on trust, confidentiality, and mutual understanding, and operates without formal funding highlighting both its value and the limitations of relying on voluntary effort. She emphasised that peer support groups can be highly impactful but are often poorly attended or unknown, despite large numbers of carers in the community. She also highlighted the importance of flexibility and inclusivity, noting that groups may work best when tailored (e.g. by age, gender, or cultural background) to build trust and relevance. A key message was that carers themselves often need to be proactive in creating support, as services do not consistently provide it, and that there is an opportunity to grow and connect more informal, community-based networks.