Tag Archives: unpaid carers

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.

National Grief Awareness Week 2025: Growing With Grief

By Matthew McKenzie, A Caring Mind

This week, we come together to recognise something deeply human, yet often hidden: grief and the people who carry it long after the world has moved on.

I’ve created a short video exploring the emotional reality of bereavement, with a special focus on unpaid carers. These are the people who quietly give their time, energy, and love to support someone through illness… and who are often left to grieve in silence when that journey ends.

My hope is that this helps spark conversations, reduce stigma, and remind anyone grieving that you are not alone.

If you or someone you know needs support, these organisations can help:

🔗 The Good Grief Trust – https://www.thegoodgrieftrust.org
🔗 AtaLoss – https://www.ataloss.org
🔗 Muslim Bereavement Support Service – https://www.mbss.org.uk
🔗 Jewish Bereavement Counselling Service – https://jbcs.org.uk
🔗 The Ubele Initiative (African & Caribbean communities) – https://www.ubele.org
🔗 Cruse Bereavement Support – South Asian Support (via specially trained volunteers) – https://www.cruse.org.uk
🔗 Switchboard LGBT+ Bereavement Support – https://switchboard.lgbt

Let’s work together to make sure every bereaved person, especially unpaid carers so they is heard, supported, and understood.
#GrowingWithGrief | #GriefSupport | #UnpaidCarers | #Wellbeing

Carols, Community and the Quiet Strength of Carers – Reflections from the Carers UK Christmas Service 2025

By Matthew McKenzie

On 4th December 2025, I had the privilege of attending the Service of Christmas Carols and Readings for Carers UK (for their 60th anniversary) at The King’s Chapel of the Savoy.

As many will know, Carers UK is a national charity that offers advice, information, and advocacy for unpaid carers, people who look after a family member or friend due to illness, disability, mental health challenges or frailty.

Their work is vital and ranges from campaigning for carers’ rights, to shaping policy, to providing emotional and practical support.

As someone who has spent years amplifying carers’ voices, and as someone who has been a carer myself, I always find moments like this grounding. They remind me that carers are so often hidden and deserve spaces of recognition, reflection, and community.

I couldnt capture the whole event, so a lot of it is from memory,

The King’s Chapel of the Savoy, with its royal heritage and intimate atmosphere, felt like the perfect place for such a service. The carved wood, the vivid ceiling, the echo of voices old and new it all contributed to an environment where carers could feel honoured rather than overlooked.

A Service That Told carer Stories

The order of service blended scripture, poetry, classic carols, and carers’ own words. Each part spoke to a different dimension of caring, love, sacrifice, resilience, loss, hope.

Here is a clear, concise list of the Carers UK Christmas Carol Service Order, based on the programme you shared.

Some of the order of Service – Carers UK Christmas Carols and Readings

  1. Carol – Once in Royal David’s City
  2. Welcome & The Bidding Prayer by The Revd Canon Thomas Woodhouse MA
  3. Welcome on Behalf of Carers UK by Helen Walker, Chief Executive
  4. Gospel According to Luke, Chapter 2, Verses 8–20 Reader: Rt Hon Sir Ed Davey MP
  5. Reading – Gospel According to Luke, Chapter 2, Verses 1–7, Reader: The Rt Rev Rob Wickham
  6. Reading – Extract from A Christmas Carol, Reader: Jaycee La Bouche, a carer
  7. The Blessing by The Revd Canon Thomas Woodhouse MA

Below are some reflections on the elements that struck me the most, based on the transcript provided.

I started noting down things when hearing the classic Clement Clarke Moore poem brought a sense of nostalgia and gentleness. For many carers, Christmas isn’t always restful, it can be emotionally heavy or practically demanding. Yet this reading reminded me of the grounding power of tradition.

There was also a Carer’s Poem – “I Carried Him” (Martin Seare), which was read by Tiggy Walker. The poem captured something familiar to many carers, which is the sense of being the energy source behind someone else’s survival. The feeling of being nurse, advocate, motivator, protector, and emotional anchor, all at once.

Jaycee’s reading from A Christmas Carol brought a heartfelt authenticity to the service, grounding Dickens’ message of compassion in real lived experience. Hearing a carer deliver those words reminded me how powerfully stories of renewal that echo the emotional journeys many carers navigate every day.

We also heard an extract from A Christmas Carol, where hearing Dickens’ words about Scrooge’s transformation felt fitting. Carers often live in a world full of systems that need to “wake up” to their realities, these systems overdue for compassion and change.

There was another Carer’s Poem – “Hands That Once Held Me” (Aaliyah O’Neill), which was read by Pippa Haywood. This poem honoured the emotional labour that accompanies caring, the grief, the patience, the love that persists through fading timelines and shifting identities.

Walking around after the service, we were provided with wine and mince pies (I could only handle one glass of mine), but ate a lot of mince pies. I also noticed on a nearby table, beautifully wrapped with red ribbon, were copies of books written by individuals deeply connected to the world of caring.

Tiggy Walker’s Both Sides Now offered a tender, candid exploration of love, loss, and the emotional realities of caring, while Why I Care highlighted personal reflections on the value and challenges of supporting others by Sir Ed Davy. Seeing these books at the event felt fitting, they extended the service’s message by giving carers stories they could see themselves in, learn from, and feel strengthened by.

Carols – Collective Voice, Collective Strength

Carols like “Once in Royal David’s City,” “O Little Town of Bethlehem,” “In the Bleak Midwinter,” “O Come All Ye Faithful,” and “Hark the Herald Angels Sing” took on added meaning.

Singing these in chapel reminded me that carers often feel alone, but they are part of a much larger story. Carols have always been about shared experience, hope, and unity. That unity was felt strongly throughout the chapel.

A Blessing for Carers

Towards the end, The Revd Canon Thomas Woodhouse offered prayers acknowledging:

  • those who care
  • those who are cared for
  • those who grieve
  • those who find joy in service
  • those who struggle silently

What the Service Meant to Me as a Carer

I left the event feeling the followng:

Being Seen

Carers rarely hear their stories reflected back to them with such respect. This service did that.

Connected

Being surrounded by fellow carers, supporters, faith leaders, and advocates reminded me that we are not navigating these challenges alone.

Renewed

Christmas can be difficult for many carers, i am running a few carer groups to reduce isolation, but this service offered a moment to pause, reflect, and recharge spiritually and emotionally.

Motivated

Each poem and reading reinforced why I continue to campaign and raise awareness: because carers’ lives, struggles, and contributions must be brought into public consciousness.

Final Thoughts

The Carers UK Christmas Service wasn’t just a festive gathering, it was a space that lifted the voices and experiences of carers into the light.

Carers UK continues to be a champion for those who give so much of themselves. And events like this remind us that recognition, community, and hope are powerful gifts.

I left the chapel gratefull for the stories shared, for the solidarity felt, and for the reminder that carers are, and always have been, at the heart of what makes our communities truly compassionate.

BONUS : A small tour of the chapel.

History in the Woodwork: Discovering the Stories Behind the Savoy Chapel’s Symbols

One unexpected part of attending the Carers UK Christmas Service at The King’s Chapel of the Savoy was the opportunity to explore some of the chapel’s remarkable historical artefacts. As a carer and someone who works in carer advocacy, I often reflect on continuity on how the past shapes the present. Walking around the chapel, I realised the walls were not just decorative; they were storytellers.

These objects and emblems remind us that the Savoy Chapel is a living part of royal, national, and personal history. And in many ways, the quiet endurance reflected in these items echoes the resilience of carers across the country.

1. The Heraldic Plaques on the Chapel Walls

Along the wooden panelled walls were beautifully detailed heraldic plaques, each representing past members or senior figures associated with the Royal Victorian Order or individuals linked to the chapel’s long history of royal service.

The Royal Victorian Order was established in 1896 by Queen Victoria as a way of personally recognising service to the monarch. That personal element, service based on loyalty, commitment, and relationship. That i felt especially meaningful as someone attending the Carers UK event.

Each plaque typically includes:

  • A coat of arms, with symbols representing the individual’s heritage, achievements, or values.
  • A Latin motto, often referencing duty, honour, or faith.
  • A record of rank or title, showing how the person was tied to the Crown or Order.

Standing before these plaques, I was reminded that service, whether to the Crown or to a loved one is always part of a bigger human story.

2. The Book of Remembrance

Displayed under protective glass, the Book of Remembrance is one of the most moving artefacts in the Savoy Chapel. It is handwritten and illuminated in a traditional style, much like medieval manuscripts.

The book honours individuals connected to the chapel, recording their names, contributions, and sometimes short dedications. Every entry is crafted with care, respecting the memory of those who served their communities or the Royal Household.

3. The Stalls with Coats of Arms of Officers and Servants of the Order

In the choir stalls, more coats of arms decorate the woodwork. These represent officers, registrars, chaplains, and others who have served the Royal Victorian Order over the decades.

Each shield is different, but together they form a visual tapestry of dedication. They signal continuity across generations much like how caring roles pass through families, communities, and time.

You can almost imagine the individuals who once occupied these seats, each carrying out their duties with diligence. Their heraldry remains here as a testament to lives spent in service.

4. The Mantle and Insignia of a Knight Grand Cross of the Royal Victorian Order

One of the most striking displays was the ceremonial mantle worn by a Knight Grand Cross of the Royal Victorian Order (GCVO). The deep blue and crimson robe, gold tassels, and the star emblem reflect the highest grade of this honour.

The mantle’s presence is not merely decorative:

  • The GCVO is awarded personally by the monarch, not via government recommendation.
  • It recognises exceptional service to the Crown.
  • The Star, Badge, and Collar each represent centuries-old tradition.

5. The Royal Victorian Order and Medal Display

This framed display explains the different grades of the Royal Victorian Order (RVO) and shows examples of the insignia, including:

  • Knight/Dame Grand Cross (GCVO)
  • Knight/Dame Commander (KCVO/DCVO)
  • Commander (CVO)
  • Lieutenant (LVO)
  • Member (MVO)
  • Royal Victorian Medal (RVM) in Gold, Silver, and Bronze

The RVM is unique because it honours personal service by staff who support the Royal Household directly, often throughout a lifetime. The photos in the display include historical figures wearing the ribbons and badges, underscoring the order’s strong ties to loyalty and lifelong commitment.

Why These Artefacts Mattered at a Carers Event

These historical items weren’t just museum pieces; they told a story of service, loyalty, remembrance, and quiet strength. I think in that sense, they perfectly framed the Carers UK Christmas Service.

Hospital Carer Discharge Meeting – November Update 2025

Chaired by: Matthew McKenzie – Lived Experience Carer

Welcome to the November 2025 update of the Hosptial Carer discharge group. The Hospital Carer Discharge Group is a collaborative network chaired by lived-experience carer Matthew McKenzie, bringing together unpaid carers, carer-centre teams, hospital staff and local authority representatives to improve how carers are identified, supported and involved throughout a patient’s hospital journey.

The group provides a space to share updates from hospitals and carers’ organisations, highlight challenges in discharge processes, strengthen links between community and acute services, and promote consistent carer-focused practices such as using the Carers Hospital Discharge Toolkit, developing standard operating procedures, and raising staff awareness.

The November meeting focused updates from the South East London Carer Standard Operating Procedure pilot, improving carer identification, strengthening links between community and hospital services, and practical challenges in engaging hospital teams.

For those who don’t know, In the context of the Hospital Carer Discharge an SOP is a step-by-step, structured process that hospital staff follow to ensure unpaid carers are identified, informed, supported and included consistently during a patient’s hospital stay and discharge.

It usually outlines:

  • How to record, communicate and follow up on carer involvement
  • Who is responsible at each stage (nurses, discharge teams, carer services)
  • What actions must be taken (e.g., asking about caring roles, sharing information, making referrals)
  • When these actions should happen (admission, treatment phase, discharge planning)

Who Attended

The session was well attended by a mix of carers, hospital representatives, and carer-centre staff, including:

Carer representatives

  • Matthew McKenzie – Chair; lived experience mental health carer; Carers UK, Carers Trust & NHS England Citizens Advisory Group volunteer.
  • Caroline – Lewisham carer, Healthwatch Lewisham member & Patient Experience Committee representative.
  • Various peer supporters, carers involved in local networks and PPGs.

Carer support organisations

  • Carers Hub Lambeth
  • Tower Hamlets Carer Centre
  • Wandsworth Carer Centre
  • North Central London Carers Support Project

Apologies

  • Sutton Carers Centre
  • Richmond Carers Centre
  • Greenwich Carers Centre
  • Harrow Carers Centre
  • Bromley Well
  • IMAGO – Lewisham carers Centre
  • Bexley Carers Support
  • Involve Kent

Hospitals & NHS staff

  • Queen Elizabeth Hospital (Lewisham & Greenwich NHS Trust)
  • Public Service Consultants (PSC)
  • Bromley, Lambeth, Lewisham, Greenwich council leads (mentioned in discussion)
  • St George’s Hospital (GESH) – references to staff

Meeting Overview

  • The growing importance of carer involvement in hospitals, especially with mental health pressures and changes to the Mental Health Act.
  • The group’s purpose: sharing updates, strengthening links between carers and hospitals, and improving the implementation of the Carers Hospital Discharge Toolkit.

Key Presentation – Update on the South East London Carer SOP Pilot

Speaker: Public Service Consultants (PSC)

The major portion of the meeting focused on the pilot testing of a new 11-step Standard Operating Procedure for identifying and supporting unpaid carers across hospitals in South East London.

🔹 Hospitals involved in the SOP pilot

  1. King’s College Hospital – Acute Medicine ward
  2. University Hospital Lewisham – Hawthorne (older patients) and Alder (specialty medicine) wards
  3. Princess Royal University Hospital (Bromley) – Frailty Unit via Transfer of Care Hub

🔹 Key outcomes

  • King’s College Hospital saw the strongest progress.
    • Nurses proactively engaged unpaid carers.
    • All leaflets and materials were distributed within weeks.
    • Carer details (with consent) were passed to Lambeth Carers Hub.
    • Nursing staff requested feedback loops to see the impact of referrals.
  • Lewisham Hospital
    • Progress slower initially; improved after site visits.
    • Ward managers highly supportive and embedding SOP practices.
    • Lewisham Council exploring funding for an in-hospital carers support team.
  • Princess Royal (Bromley)
    • SOP and leaflets now shared with the frailty unit.
    • Council to continue taking work forward.

🔹 Overall reflections

  • Hospitals still experience heavy winter pressures and staff capacity issues.
  • Engagement differs widely between NHS trusts.
  • Many ward teams had never seen the London Carers Toolkit, indicating a need for simplification.
  • Councils intend to continue cross-borough meetings after PSC’s involvement ends.

Issues & Discussion Points

1. Gaps in consistency across hospital sites

  • Queen Elizabeth Hospital (QEH) had not been part of the pilot, they have requested to be included
  • Staff expressed interest in adopting SOP materials and joining future rollout.

2. Carer diversity and training needs

Caroline highlighted the need for:

  • Training reflecting different care needs: LD, dementia, mental health, elderly carers.
  • Cultural diversity considerations in how carers interact with hospital teams.
  • Better alignment with Lewisham & Greenwich’s Compassion in Care programme.

3. Current SOP scope limitations

  • SOP starts at the ward stage, but carers need involvement pre-admission and post-discharge.
  • Best practice from NICE and the national toolkit emphasises whole-journey support.

4. Hospital culture & resistance

Carer-centre staff described feeling:

  • Like a “hindrance” in MDT or discharge meetings
  • Sometimes unwelcome or blocked from engaging on wards
  • Fighting clinical priorities vs. carer rights
  • Still needing major awareness-raising to reduce resistance

A carer noted power imbalances and the risk that carers are seen as “barriers to discharge” rather than essential partners.

Updates from Carer Centres & Hospital Teams

Carers Hub Lambeth

  • Significant increase in referrals, especially from King’s.
  • Engagement seems weaker at Guy’s & St Thomas’, it looks to be still pushing for a stronger carers strategy there, but hopeful the strategy should pick up.
  • Working with ward rounds and direct conversations with carers.

North Central London Carers Project

Working across 8 hospital sites, possilbly

  • Royal Free Hospital
  • Barnet Hospital
  • North Middlesex Hospital
  • Chase Farm Hospital
  • The Whittington Hospital
  • University College Hospital
  • St Pancras Rehabilitation (Camden and West London)
  • Community Central London Trust 
  • North London Foundation Trust (Mental Health)

Updates include:

  • A hospital “menu” to track progress across the toolkit (training, comms, discharge planning).
  • Embedding carers into induction programmes.
  • Co-authoring discharge documentation at St Pancras Rehab Centre with dedicated “carer sections”.
  • Upcoming use of Cerner electronic records system to automatically flag carers.

Tower Hamlets Carer Centre

Carer representative based at Royal London Hospital (east London)

Challenges include:

  • Slow referrals & reliance on staff awareness
  • Some carers only identified at crisis stage
  • Need to expand the carers passport across Royal London
  • Hackney pilot ends in March concerns about future funding

Wandsworth Carer Centre / St George’s

SONY DSC
  • Developing carer awareness training with Patient Experience Team
  • Growth in referrals after training sessions, though staff forget over time
  • Plan to expand ward coverage
  • As chair I shared St George’s new Carers Charter as a tool for accountability

Carer-Led Developments in Primary Care

A group of Lewisham unpaid carers has begun major work with GP practices, including:

  • Creating a PCN-wide carers information pack
  • Ensuring carer champions in GP surgeries
  • Working with pharmacies to distribute information
  • Improving identification on GP systems
  • Exploring alignment with Lewisham’s new Carers Action Plan

Plans for the Future

  • More invitations to NHS carer strategy leads
  • Sharing SOP materials with non-pilot hospitals where possible.
  • Matthew to link contacts across councils and hospitals for ongoing monitoring, being the following boroughs e.g.

Lewisham

  • Assistant Director – Adult Mental Health & Wellbeing
  • Joint Commissioner – Adult Mental Health & Wellbeing

Greenwich

  • Strategic Commissioning Lead
  • Commissioning Lead for Carers

Bromley

  • Assistant Director – Commissioning
  • Commissioning Officer

Bexley

  • Service Manager – Adult Social Care

Lambeth

  • Integrated Commissioning Manager – Adults and Health

Southwark

  • Strategic Programmes Manager
  • Commissioning Manager

Medium-term aims

  • Push for in-hospital carer support teams in Lewisham & Greenwich.
  • Expand training and embed carers into staff induction.
  • Improve pre-admission and discharge-planning pathways on carer identification and involvement for familes and carers.
  • Stronger collaboration between LD nurses, dementia teams, and carers services.

Longer-term aspirations

  • Greater consistency across trusts
  • Unified carers strategy within each hospital
  • A system where carers are routinely recognised, supported, and involved in decisions

Closing Remarks

As cchair I closed the meeting by thanking attendees and acknowledging the collective effort to improve carers’ experiences across London hospitals. I reaffirmed the importance of:

  • Making carers visible
  • Ensuring rights are upheld
  • Strengthening trust–carer relationships
  • Carrying learning into the new year

The next meeting will be scheduled in January, with hopes of smoother cross-hospital collaboration in 2024.

SW London Carers Forum – November 2025 Update

By Matthew McKenzie, Co-Facilitator – SW London Carers Forum

About the South West London Carers Group

The South West London Carers Group brings together unpaid mental health carers from across the boroughs of Sutton, Merton, Wandsworth, Richmond and Kingston, to share experiences, gain peer support, and stay informed about local health and social care developments.

The group provides a safe and welcoming space where carers can discuss the challenges of supporting loved ones particularly those with long-term conditions or mental health needs while also learning from guest speakers, professionals, and each other. Co-facilitated by myself, the forum plays an important role in making carers’ voices heard and strengthening connections between carers and local NHS, mental health, and community services.

Our November South West London Carers Group meeting brought one of the most informative sessions we’ve had all year. We were joined by Dalvinder, the Patient Experience Lead for NHS 111, who provided a thorough and eye-opening look at how the 111 urgent care service really works, what carers can expect, and how the system is evolving.

Dal’s role involves reviewing patient feedback, monitoring the quality of calls, and ensuring that the service remains compassionate, safe, and responsive. He also regularly meets with community groups, like ours to raise awareness of what 111 can offer.

24/7 Telephone Assessments

Dal opened by reminding us that NHS 111 operates 24 hours a day, 365 days a year, and never closes. The telephone assessment is often the first point of contact, and callers speak to a trained health advisor who uses the NHS Pathways system to ask structured questions. This ensures the call handler can rule out serious issues and direct the caller to the right service quickly. Dal emphasised that while questions can feel detailed or repetitive, each answer opens or closes clinical “pathways,” helping the system determine the safest next step.

GP Home Visiting (Evenings, Overnights, Weekends)

One of the biggest surprises for many carers was learning that NHS 111 has a GP home visiting service, specifically for times when GP surgeries are closed weekday evenings, overnight, weekends, and bank holidays. This service is intended for people who cannot safely travel, including those with mobility issues, caring responsibilities, or urgent health needs that don’t require hospital care. If a home visit is determined to be appropriate, a GP working for 111 can visit in a dedicated GP car and may provide medication on the spot or issue prescriptions if needed.

Primary Care Clinics (PCCs) – Same-Day Appointments via 111

Dal also explained the role of Primary Care Clinics (PCCs) located across South West London. These clinics operate outside normal GP hours and can see patients the same day—but crucially, access is by 111 referral only. If 111 decides that someone needs to see a GP face-to-face and can travel, they may be booked into a PCC appointment. Carers learned that you cannot walk into these clinics directly; 111 must assess the situation and confirm the appointment. This helps manage demand and ensures that appointments go to those who need them most urgently.

The Expanding Role of Pharmacies and “Pharmacy First”

Another major theme was the evolving role of pharmacies in urgent care. Dal explained that pharmacists are highly trained professionals—more trained than many realise—and 111 can now direct callers to pharmacists for assessments, repeat prescriptions, and urgent medication needs. The Pharmacy First scheme allows some pharmacies to provide consultations and treatment in private rooms for a range of minor illnesses. 111 can also arrange emergency prescription access if someone runs out of routine medication while travelling, provided the medication is part of their regular treatment.

Arranging Call-Backs From Your Own GP

In certain situations, NHS 111 can request that your own GP practice contacts you, especially for non-face-to-face issues such as renewal of regular medication, questions about paperwork, or administrative needs. While GP appointment slots reserved for 111 are limited and fill quickly, the service can still send urgent notifications to GP surgeries when clinically necessary. Dal encouraged carers to mention when the need is time-sensitive so the system can prioritise appropriately.

Mental Health Support via 111 Option 2

One of the most important updates for mental health carers was the introduction of 111 Option 2, currently being trialled across London. When callers choose this option, the call is diverted away from standard 111 and straight to local specialist mental health teams, who can assess issues such as relapse, agitation, distress, changes in behaviour, or crises at home. Dal emphasised that while 111 is not a specialist mental health service, Option 2 ensures that people with mental health needs receive expert support. Data from the pilot is expected next year, and Dal offered to return to share the outcomes.

What We Learned About NHS 111

Many carers know the NHS 111 number exists, but few realise the range of services behind it. Dal explained that 111 is a free, 24/7 service (including weekends and holidays) designed for urgent health concerns that are not life-threatening.

Many carers commented that they had no idea 111 provided such a broad range of services.

Questions From Carers

Carers asked many thoughtful and practical questions during the session, including:

1. Mental Health Crises

A carer asked how 111 responds to mental health emergencies, particularly when someone becomes distressed, unwell, or difficult to support at home.

Dal explained that 111 itself is a generic urgent care service, but Option 2 sends callers straight to trained mental health professionals, who can triage cases such as relapse, agitation, or risk concerns in a more specialist way.

2. Access to Medical Records

A question was raised about whether 111’s clinicians can view a patient’s medical history.

Dal clarified that clinicians have access to the Summary Care Record, containing essential medical information, medications, conditions, and recent interactions—if the caller gives consent.

3. Home Visiting Times and Coverage

Carers asked about response times and geographical limits.

Dal explained that SW London is fully covered, though travel times vary depending on the area and how busy the service is. Home visiting is evenings, nights, and weekends only.

4. Staffing Levels and Training

One question focused on whether call handlers are medically trained.

Dal shared that 111 employs 180 health advisors in SW London—non-clinical staff who have completed an intensive six-week training program. They follow the NHS Pathways system and are supported by clinical advisors (GPs, nurses, paramedics) who can join or take over calls when needed.

5. Using 111 When Travelling

A carer asked about getting medication while away from home.

Dal explained that 111 can arrange for prescription collections at pharmacies in another part of England, which has helped many travellers who forget medication.

6. Hearing Impairment and Accessibility

There was interest in support for people who cannot make phone calls.

Dal confirmed services such as text relay, online 111, and the NHS App, all of which improve accessibility for carers and patients with additional needs.

Carer Reflections and Experiences

Several carers shared personal experiences both positive and challenging. One described how 111 triage was vital when they urgently needed treatment for a severe infection, while another discussed difficulties when GP surgeries didn’t always respond quickly to reports sent by 111.
These real stories helped emphasise how important it is for carers to know when and how to use the service, and how essential accurate information is during triage.

Key Tips Dal Shared for Carers

  • Give as much information as possible, including social factors such as caring responsibilities, mobility challenges, or inability to travel.
  • Stay with the person you’re calling about, as the call handler will ask you to check symptoms in real time.
  • Tell 111 if symptoms change—this can alter the urgency and outcome.
  • Always keep your phone nearby when waiting for a callback; 111 will try only three times.
  • Don’t hesitate to call again if you’re unsure or worried.

Closing Thoughts

The session was incredibly well-received. Many carers said they learned things they never knew, even though they had used 111 before. Dal’s openness and honesty—both about what the service can do and what its limitations are—made his presentation especially valuable.

As co-facilitator, I (Matthew McKenzie) will continue to share information like this to help carers navigate local health services more confidently. We hope to invite Dal back once the evaluation of 111 Option 2 (mental health) is published, we also have a keen interest on what the ICB is doing especially regarding carer involvement.

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.

Partnering for Better Outcomes – Reflections on My Latest Royal College of Nursing Blog

By Matthew McKenzie – Cancer Carer forum Facilitator

Partnering for Better Outcomes – Reflections on My Latest RCN Blog

Supporting someone living with cancer is a journey filled with uncertainty, responsibility, and deep emotional commitment. As many carers know, much of this work happens quietly in the background. But every so often, there’s an opportunity to shine a light on the realities carers face and the vital partnerships that make a difference.

I’m proud to share that the Royal College of Nursing (RCN) recently invited me to contribute to their blog as part of a wider piece exploring how nurses support cancer caregivers. Written by Shannon Copeland (PhD researcher at Queen’s University Belfast), Partnering for better outcomes: How nurses support cancer caregivers highlights the evolving role of informal carers and the essential collaboration between families and nursing professionals.

In the blog, I shared my lived experience as an unpaid carer, the challenges, the emotional strain, and most importantly, the difference nurses can make when they recognise and support carers as part of the care team. Simple acts such as clear communication, continuity of support, and acknowledgment of a carer’s role can transform the caregiving experience.

Nurses often stand at the intersection of patient and carer needs. When they listen, guide, and empower carers, both patients and families benefit. I’m grateful to Shannon and the RCN for giving space to these conversations, and for highlighting the importance of carer voices in cancer care.

💙 Read the full RCN blog here: Partnering for better outcomes: How nurses support cancer caregivers
https://www.rcn.org.uk/news-and-events/Blogs/partnering-for-better-outcomes

If you’re a carer, a nurse, or someone interested in improving cancer support, I encourage you to give it a read and join the discussion. Together, we can continue raising awareness of the carer journey and push for better recognition, resources, and collaboration across health and social care.

Equality: Today and Tomorrow — Reflections from the Mary Webster Lecture

By Matthew McKenzie – Carer activist (volunteer of Carers UK)

Last night I attended the Mary Webster Lecture at Apothecaries’ Hall in London, a special event marking Carers UK’s 60th anniversary. As someone who has cared for family members and now volunteers with Carers UK, it was moving to sit among other carers, professionals, and campaigners who have worked so hard for recognition and equality.

The event honoured Reverend Mary Webster, the founder of Carers UK, whose vision decades ago helped lay the foundations for unpaid carers’ rights. Today, as we still fight for equality and understanding, her legacy feels more important than ever.

Setting the Scene

Apothecaries’ Hall is a grand, historic space filled with portraits and a sense of tradition. But it also felt like the right place to discuss change how we can build a future where carers are respected and supported equally. The evening began with warm welcomes and reflections from Helen Walker, Chief Executive of Carers UK. She reminded us that while progress has been made, many unpaid carers still live in poverty, often earning less than the minimum wage for full-time dedication.

Then came the highlight of the evening a talk by The Right Reverend and Right Honourable Dame Sarah Mullally DBE, Bishop of London and recently named Archbishop of Canterbury Designate, in conversation with Baroness Jill Pitkeathley OBE, long-time carer champion and former Carers UK CEO.

Dignity in Caring

Bishop Sarah spoke with warmth and honesty about her journey from nursing to the Church. What struck me most was her story about washing her grandmother’s feet when she was a young nurse, which a simple act that carried deep dignity. She used that image to describe caring itself: often quiet, unseen, but filled with compassion and humanity.

Her message was clear that care is about dignity. Every person, regardless of ability, age, or background, has value. She reminded us that dependency isn’t weakness it’s part of being human. We all depend on others at different points in our lives.

As a Black male carer, that message really resonated. In many of our communities, caring happens quietly, often behind closed doors, without recognition or support. Bishop Sarah’s words reminded me that this invisible work deserves to be seen and respected not just by policy makers, but by society as a whole.

Lessons on Equality and Faith

Baroness Pitkeathley joined Bishop Sarah for a deep conversation about equality today and tomorrow. They reflected on how far carers’ rights have come and how far we still have to go. From health and financial struggles to workplace inequality, many of the same challenges from the 1990s remain today.

Bishop Sarah also spoke about the Church’s Reimagining Care Commission, which calls for a new “covenant of care” a moral agreement between government, communities, and families to share responsibility for those who need care. It’s not just about services, but about values: compassion, respect, and community.

Hearing that from someone soon to become the Archbishop of Canterbury gave me hope. It felt like a recognition that faith, ethics, and social justice must go hand in hand.

Voices from the Floor

The Q&A that followed was emotional and powerful. Carers from the audience spoke up about their struggles housing, mental health, disability, and the loneliness that caring can bring.

One carer shared the pain of fighting for proper housing for her disabled son; another spoke about the toll on her own health. Each voice reminded me that caring is more than statistics it’s real people doing extraordinary things every day, often without support.

My Reflection as a Black Carer Activist

As I looked around the room, I thought of the carers in Black and ethnic minority communities who face extra barriers language, stigma, or fear of not being understood. Too often, our voices are missing from the conversation. I decided to have a chat with Dame Sarah Mullally about my thoughts, still nights like this show that inclusion is possible, and necessary.

Equality for carers means also recognising our diversity on different cultures, faiths, and family structures and ensuring that every carer can access the help they need, without judgement or struggle.

I left the event feeling encouraged but also challenged. Encouraged by the leadership and compassion of women like Bishop Sarah and Baroness Pitkeathley, who continue to champion carers’ rights. Challenged, because the journey isn’t over and each of us, whatever our background, has a role to play.

A Call for Tomorrow

Sixty years after Mary Webster founded Carers UK, unpaid carers are still holding society together.

We save the country billions, yet too many of us live in hardship. As Bishop Sarah said, we must rethink how we value care not as a cost, but as a cornerstone of our humanity.

For me, as a carer activist, that means continuing to speak up, share stories, and bring carers from all communities together. Because equality today and tomorrow starts with being seen, heard, and valued.