Tag Archives: community support

Behind Closed Doors: Facing Community Stigma as an Unpaid Mental Health Carer

By Matthew McKenzie – Ethnic Mental Health Carer and Poet

invisible challenge for ethnic minority mental health carers. “Poem 15: The friends I have lost,” a powerful spoken-word piece from Matthew McKenzie’s poetry book that is in development Unpaid, Unseen and Yet Unbroken, sheds a crucial light on this hidden struggle.

It captures the profound loneliness of an unpaid carer who watches friendships fade away as community members close their ears and elders demand privacy over open support. By highlighting the intersection of familial duty, mental illness, and societal rejection, this moving presentation exposes the heavy emotional toll born by those who care for loved ones behind closed doors.

This poem serves as a stark reminder of why initiatives like the Patient Carer Race Equality Framework (PCREF) are so urgently needed in healthcare and community support networks today.

Watch the full poetry video to immerse yourself in this essential conversation, and help us raise awareness for the vital support and recognition that ethnic minority mental health carers truly deserve.

By dismantling the barriers of stigma and addressing the specific inequalities faced by ethnic minority families, PCREF aims to ensure that no carer is left to navigate this challenging journey in absolute isolation.

Carers Week 2026 Round-Up

By Matthew McKenzie – Carer, Campaigner, Author and Speaker

5 June 2026 – Supporting Kent County Council’s Carer Awareness Campaign

Although not officially part of Carers Week, my activities with Kent County Council formed an important part of my ongoing commitment to raising awareness of unpaid carers. I supported the county’s long-term carer awareness campaign by taking part in filming designed to help train council staff to better recognise and support carers.

I also discussed future opportunities to speak at Kent County Council carer groups and continued promoting my own support groups across the county. It was encouraging to see local government investing in carer awareness and recognising the importance of ensuring carers are identified, valued and supported within their communities.

9 June 2026 – Developed Video promotion for Carers Week 2026

I did my bit to raise awareness of Carers Week 2026 via a video I developed, which you can see below.

8 June 2026 – Carers Week Stall at St George’s University Hospital

Carers Week officially began with a rewarding day at St George’s University Hospital, where I hosted a Carers UK information stall. The event provided an opportunity to engage directly with unpaid carers, patients, hospital staff and visitors, sharing information about the support available to carers both locally and nationally.

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East Sussex Carers Voices – Celebrating Carers Week 2026

East Dean Village Hall – 11 June 2026

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

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

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

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Carers Week Celebration 2026: A Day of Recognition, Reflection and Resilience

By Matthew McKenzie – Carer, Author, Poet and Host of the Carers UK Information Stall
10 June 2026, Perceval House, Ealing

As a carer myself, supporting both of my brothers, I understand that caring is often a role we never planned for, yet one we embrace out of love, duty and commitment. It can be rewarding, but it can also be isolating, exhausting and overwhelming. That is why events such as the Carers Week Celebration 2026, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council, are so important.

I think it reminds us that carers matter, that our voices are heard and that we are not alone.

Having the privilege of hosting the Carers UK information stall, while also attending as a carer, poet and author, I witnessed first-hand the incredible sense of community that filled Perceval House throughout the day.

The event brought together carers, professionals, charities, community organisations and council representatives for a celebration that was both informative and inspiring. Alongside the opportunity to gather information and advice, carers enjoyed complimentary refreshments, free manicures from students of Uxbridge College, artwork exhibitions and the chance to connect with others who truly understand the caring journey.

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Volunteers’ Week 2026 UK – The Power of Volunteering and Caring

By Matthew McKenzie – Carer UK ambassador and volunteer

As proud volunteer with Carers UK and Carers Trust, and alongside healthcare teams in hospitals supporting unpaid carers and families. I want to take a moment to recognise the incredible contribution volunteers make every single day.

As we celebrate Volunteers’ Week 2026, across our communities, volunteers give their time, skills, compassion, and energy to help others, often without seeking recognition. Their impact is immeasurable.

For me, volunteering is about making a difference, no matter how small. Sometimes it is providing information and advice to a carer who feels overwhelmed. Sometimes it is speaking up for those whose voices are not being heard. Sometimes it is simply listening. These acts of kindness can change lives.

As carers, many of us already give so much of ourselves to support loved ones. Yet volunteering can also be a powerful way to create change, build connections, and strengthen our communities. It reminds us that we are not alone and that together we can make a positive impact.

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.

Step Outside, Connect, and Recharge: Join Carers Active Together in Hyde Park

Taking time for yourself as a carer isn’t always easy. The daily responsibilities, emotional demands, and constant care for others can often mean your own wellbeing takes a back seat. That’s why initiatives like Carers Active Together matter more than ever.

This Wednesday 15 April, a national day of action is bringing carers across the UK together to focus on movement, wellbeing, and community and you’re invited to be part of it.

A simple step that makes a difference

As part of the day, Carers UK is hosting a free, friendly wellbeing walk in Hyde Park, which is a chance to pause, breathe, and connect with others who understand the caring journey.

Whether you’re caring for a loved one full-time or supporting someone alongside work and life commitments, this walk is designed to be inclusive, relaxed, and welcoming. There’s no pressure, just an opportunity to enjoy fresh air, gentle movement, and good company.

Event details

  • Date: Wednesday 15 April
  • Time: 11:00am
  • Location: Meet at Serpentine Bar and Kitchen, Hyde Park
  • Cost: Free

As highlighted on the event flyer (page 1), the walk is all about giving carers a chance to “get some fresh air, connect with your community, and enjoy a supportive stroll with local carers.”

Why join the walk?

Sometimes the smallest actions like a walk in the park can have the biggest impact. Taking part in this event can help you:

  • Boost your physical and mental wellbeing
  • Meet other carers and share experiences
  • Feel part of a supportive community
  • Take a well-deserved break in a beautiful setting

You’re not alone

Carers play an essential role in our communities, often quietly and without recognition. Carers Active Together is a reminder that your wellbeing matters too and that support is out there.

If you know someone who is a carer, consider sharing this with them. A simple invitation could make a meaningful difference.

Register your place

Spaces are free, but registration is encouraged. You can sign up here:
👉 https://bit.ly/4uEXwJO

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.