Tag Archives: community support

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

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

King’s College Hospital – Acute Medicine ward
University Hospital Lewisham – Hawthorne (older patients) and Alder (specialty medicine) wards
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

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.

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.

Lewisham, Southwark & Lambeth carer forum update October 2025

The recent Carers Forum brought together unpaid carers, health professionals, and community organisations from across South London to share updates, experiences, and ideas for improving mental health support. The event, chaired by Matthew McKenzie, created a safe and open space for carers to connect, exchange information, and have their questions heard by local health leaders.

Setting the Scene

Matthew opened the session by welcoming carers from across Lambeth, Lewisham, and Southwark. He spoke about the importance of providing carers with dedicated time to hear from service providers, particularly those supporting someone with mental ill-health and to ensure their voices shape local mental health strategies.

Continue reading →

Reflections from King’s Mental Health Fair 2025 – A Carer’s Perspective

By Carer Activist – Matthew McKenzie

Today, I had the privilege of being part of King’s College Hospital NHS Foundation Trust’s Mental Health Fair, held on Thursday 2nd October, in recognition of World Mental Health Day 2025.

The event brought together a wide range of organisations and community groups working tirelessly to support the mental health and wellbeing of patients, families, and carers.

Why carers need to be at the heart of mental health conversations

As someone who has cared for a loved one experiencing mental health challenges, I know firsthand the importance of recognising and supporting carers through the groups i run.

Continue reading →

Understanding Community: The Foundation of Connection

By Matthew McKenzie – A Caring Mind

Community is a word we hear often, but its true meaning and significance can sometimes be overlooked. At its core, a community is a network, a web of relationships built on shared identity, common themes, and mutual trust. Communities are formed when people come together, united by a sense of belonging and shared responsibility. This sense of belonging is not just about being part of a group; it’s about feeling valued, having a purpose, and working towards common ideals.

This blog is a transcript of the video below.

Communities exist in many forms. The most immediate and intimate is the family, where the seeds of unpaid caring are often sown.

Continue reading →

Hospital Carers Discharge Meeting Update July 2025

Posted: July 2025
By: Matthew McKenzie

In July 2025, we held another meeting of the London Hospital Discharge Carers Forum, which brings together carer centres, NHS professionals, and lived experienced unpaid carers to explore how we can better support unpaid carers through the complex hospital discharge journey.

With key developments shared, questions raised, and future opportunities on the table, I’m sharing this blog to ensure everyone is informed.

A Focus on Hospital Discharge but With Carers at the Centre

The forum continues to highlight how vital carer centres are in delivering effective, compassionate discharge support. But alongside that recognition comes rising expectations: better digital access, stronger links with acute hospital teams, more formal involvement in care planning, and even new digital tools to manage carer identity and input.

Our role is growing and so is the need for collective visibility and coordinated action.

Key Themes from July’s Discussion

1. NHS England Hospital Discharge Toolkit & Care Contingency Plan
As an involved carer, I delivered the NHS England update. The main message? The Care Contingency Plan (CCP) is becoming a key focus across the system. There are planning sessions due in September, and carer centres might be asked whether they can take on CCP delivery alongside existing carers assessments.

This triggered a crucial question: Will additional funding or contractual support be offered to carer centres taking on CCPs? because we can’t afford to quietly absorb additional workload without clarity on resources or expectations.

2. Digital Tools – NHS App & Carer Self-Identification
With the growing digitisation of NHS services, there are plans to enable carers to self-identify via a digital route. The Universal Care Plan (UCP) is being built into the NHS app, but there’s confusion about whether a separate “carer app” is being developed too.

We’ve asked NHS England for clarification: Will carers be expected to use one NHS app to manage both contingency plans and carer registration, or will multiple systems be introduced? The answer will have implications for how we support carers with digital skills and accessibility.

3. The Bigger Picture – NHS 10-Year Plan and Local Adaptation
We explored how the new 10-Year NHS Plan mentions carers primarily in the context of discharge, but offers little in terms of direct support or investment in carers themselves. Several carer centres raised concerns about being seen only as a means to improve discharge outcomes, rather than as partners in their own right.

That said, some centres are using the plan as an opportunity, working with local Integrated Care Boards (ICBs) to adapt and influence how the priorities are rolled out locally, including integration with neighbourhood health centres and walk-in clinics.

Peer Learning and Local Centre Updates

As always, our meeting included practical insights from carer centres embedded in local hospitals. Topics included:

Establishing hospital-based carer hubs and information desks.
Hosting monthly drop-ins for carers on specific wards (e.g. stroke and frailty).
Using ward rounds to identify and build relationships with staff willing to act as carer champions.
Overcoming challenges in gaining visibility, sustaining presence, or maintaining resource levels for in-hospital work.
Planning carers coffee mornings and pop-up stands to increase footfall and engagement.

For newer hospital-based carer workers, this space proved invaluable as a place to learn from colleagues, gather ideas, and avoid isolation.

Project Developments: What Centres Need to Know

Several borough-wide and London-wide initiatives are taking shape that could directly affect how carer centres operate in coming months:

A standard operating procedure for hospital discharge, currently being developed across South East London, is aiming to streamline how carers are engaged at discharge, with pilot sites starting this September.
In North Central London, work is underway on a web portal that makes it easier for hospital and emergency staff to refer carers into local support services including from the London Ambulance Service.
Carer Centres in several areas are starting or refreshing carer charters, carer passports, and surveys designed to codify carer involvement and measure experience across hospital pathways.
Carer support workers at one major South London hospital are re-establishing visibility post-staff transition. Efforts are underway to build new ward-level relationships and identify carer champions among staff. The centre is also exploring monthly carer drop-ins, asking the group for ideas on what works well and what doesn’t.
One East London carer centre has established a hospital-based hub on a specific ward floor, acting as a go-to space for carers needing support or information. They also run monthly drop-in sessions on elderly/frailty and stroke wards conditions where family involvement in discharge planning is often critical.

These projects are at different stages, but all point to one thing: carer centres are being asked to operate more visibly, more formally, and more digitally. It’s essential we shape this process and not just respond to it.

With NHS England’s CCP work moving fast and carer integration into digital systems ramping up, carer centres can no longer afford to remain on the sidelines.

We have a chance to be informed of policy changes early not after implementation.
Carer centres and hospitals can raise concerns about workload, training, and funding before it’s too late.
Newer or isolated workers benefit from collective knowledge-sharing and support.

This is not just another meeting, it’s one of the few cross-borough forums focused squarely on carer centres in the acute hospital context.

Looking Ahead: September Session

Our next meeting will be held usually the last week of September.

Let’s not let carers be an afterthought. Let’s make sure carer centres are seen, heard, and properly resourced.