By Matthew McKenzie – Member of Southwark Carers Strategy Working Group
Southwark Council is inviting unpaid carers from Southwark to share their experiences and help shape its review of adult safeguarding services.
The council’s Health, Adult Social Care and Community Safety Scrutiny Commission is examining how safeguarding services can better support adults and their carers while promoting independence, dignity, choice and wellbeing.
The Commission would particularly like to hear carers’ experiences of:
Working with safeguarding and other professionals
Accessing information and support
Being included in safeguarding decisions
Preventing abuse, neglect and other forms of harm
Balancing personal safety with independence and choice
Self-neglect and hoarding
The use of technology
Communication with carers
Supporting someone living with dementia or mental ill health
Caring for an adult child or sibling with a disability
Your experiences could help the Commission identify what is working well, where improvements are needed and how carers can be more effectively recognised and involved.
Complete the carers’ survey
Unpaid carers can share their experiences through Southwark Council’s online Adult Safeguarding Review Carers’ Survey:
The survey is anonymous and will remain open until Friday 11 September 2026.
Join the online carers’ workshop
Southwark Council is also holding an online workshop where carers can discuss their experiences in greater detail.
Join the online carers’ workshop
Southwark Council is also holding an online workshop where carers can discuss their experiences in greater detail.
Date: Thursday 20 August 2026 Time: 12:30 pm Location: Online via Microsoft Teams
To request the Microsoft Teams joining details, please contact Julie Timbrell, Scrutiny Project Manager, at:
Please include “Adult Safeguarding Carers’ Workshop” in the subject line.
For safeguarding and meeting security, the direct Teams link and passcode are not being published on this website.
If you cannot attend the workshop, you can still contribute to the review by completing the anonymous survey.
Confidentiality and use of information
Taking part in the survey or workshop is voluntary.
Notes will be taken during the workshop, but participants’ comments will be anonymised before they are included in reports or presented to councillors. Individual participants will not be identified without their explicit consent.
Survey responses will also be analysed and reported anonymously. Southwark Council is interested in identifying common themes and experiences rather than identifying individual carers.
The information collected will only be used to inform the Adult Safeguarding Review and its recommendations. A report containing the Commission’s findings and recommendations will be published after the review has been completed.
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.
This blog post provides an overview of the key themes, speakers and discussions for those who were unable to attend.
Opening Remarks – Dr Neil Churchill
Dr Neil Churchill opened the event by welcoming attendees and recognising the significant contribution unpaid carers make to families, communities and public services.
He highlighted several key challenges currently facing carers:
• Rising financial pressures and cost-of-living concerns. • The growing number of carers leaving employment due to caring responsibilities. • Increased risks of poor physical and mental health among carers. • Social isolation and loneliness experienced by many carers. • Growing concerns around carer burnout.
Dr Churchill stressed that the country depends heavily on unpaid carers and that health and social care systems would struggle to function without them. He also spoke about the importance of moving towards a model where carers are treated as equal partners in care rather than simply being expected to cope alone.
A key message from his introduction was that carers should not be left to navigate fragmented services by themselves. Instead, health, social care and voluntary sector organisations must work together more effectively to recognise, support and value carers.
Carer Stories and Lived Experience
One of the most powerful aspects of the event was hearing directly from carers themselves.
Miles Bing – Caring Through Dementia
The first speaker was Miles Bing, author of “Deadheaded: An Alzheimer’s Memoir by Mother and Son”.
Miles shared his family’s experience of supporting both of his parents through Alzheimer’s disease. His presentation explored the emotional impact of caring at a distance, the guilt often experienced by family members who live far away, and the difficulties of coordinating support across multiple services.
He spoke about:
• The long-term impact of dementia on families. • The challenges of accessing services in rural areas. • The lack of coordination between health and social care systems. • The practical and emotional burden placed on carers.
Many attendees identified strongly with his comments regarding the need for carers to act as coordinators between multiple organisations that often fail to communicate effectively with one another.
Young Carers – Julia and Elsie
The audience then heard from young carers Julia and Elsie, whose presentations left a lasting impression on everyone in the room.
Both spoke honestly about growing up while caring for family members with complex needs. They described responsibilities that included supporting parents during health crises, helping siblings with disabilities and managing situations involving emergency services.
Their stories demonstrated:
• The hidden nature of young caring responsibilities. • The emotional impact caring can have on children and young people. • The importance of early intervention and support. • The value of dedicated young carers services.
Perhaps most importantly, they highlighted that while caring can build resilience, no child should have to face these responsibilities without support.
The standing ovation they received reflected the courage and honesty with which they shared their experiences.
Round Table Discussions
Following the morning speakers, attendees participated in facilitated round table discussions.
These conversations focused on:
• The biggest issues facing carers over the next six months. • Practical actions that could help carers in their caring role. • Barriers to accessing support. • Positive examples of support that should be expanded.
Several common themes emerged from these discussions:
Earlier Identification
Many carers reported not being recognised as carers until they had reached crisis point. Participants called for earlier identification within GP surgeries, hospitals and community services.
Access to Information
Attendees highlighted how difficult it can be to find accurate and timely information about available support.
Financial Pressures
Many carers discussed the financial impact of caring, including reduced employment opportunities and increasing household costs.
Mental Health and Wellbeing
Carers spoke about the emotional strain of caring and the importance of counselling, respite and peer support services.
Speaker sessions resumes
Diverse Communities and Caring
A particularly thought-provoking presentation was delivered by Manal Ahmed, who supports carers from ethnically diverse and refugee communities.
She discussed additional challenges experienced by carers from minority communities, including:
• Language barriers. • Cultural differences. • Social isolation. • Displacement trauma. • Immigration-related issues. • Financial and emotional dependency.
Manal explained that many carers experience multiple layers of disadvantage and that support services must be culturally aware and accessible to everyone.
She also highlighted positive examples of community-building activities that help carers connect with one another and reduce isolation.
Her presentation reinforced the importance of ensuring that no carer is excluded from support because of their background, language or circumstances.
My Presentation – A Carer’s Journey
I was invited to speak about my own experiences as a young carer and later as an adult carer supporting family members with autism and serious mental illness.
One of the key messages I shared was that many carers do not initially recognise themselves as carers. Like many people, I simply viewed what I was doing as helping my family.
However, over time I found myself:
• Coordinating care. • Supporting hospital admissions and discharges. • Managing appointments. • Advocating with professionals. • Navigating complex systems. • Supporting multiple family members simultaneously.
I spoke about how difficult it can be when carers are not listened to or involved in important decisions.
I also highlighted the importance of recognising carers as equal partners in care and ensuring that professionals understand the expertise carers develop through lived experience.
One of the central themes of my presentation was carers’ rights.
I encouraged carers to:
• Identify themselves as carers. • Seek support from local carers organisations. • Request carers assessments. • Learn about their rights. • Participate in co-production and service improvement. • Share their experiences to help reduce stigma.
To conclude, I performed my poem “It’s My Right”, which focuses on the rights every carer should expect to receive, including recognition, respect, involvement, information and support.
Afternoon Reflections and Future Priorities
The afternoon session included reflections from senior leaders from Care for the Carers, East Sussex County Council and NHS Sussex.
Discussions focused on:
• Improving identification of carers. • Supporting carers before crises occur. • Encouraging carers to access support services. • Learning from positive experiences of care. • Strengthening partnerships between carers and professionals.
Representatives acknowledged the crucial role carers play and listened to feedback gathered throughout the day.
Many carers expressed concerns about navigating systems that can often feel complicated and difficult to access. There was broad agreement that services should be simpler, more joined-up and more responsive to carers’ needs.
Key Messages from the Day
Several important messages emerged consistently throughout the event:
Carers Need Recognition
Many carers remain hidden and unidentified. Earlier recognition can lead to earlier support.
Carers Need Practical Support
Information, respite, emotional support and financial advice remain essential.
Carers Must Be Involved
Carers are experts in the lives of the people they support and should be treated as partners in care.
Young Carers Need Protection
Children and young people with caring responsibilities require dedicated support and opportunities to thrive.
Communities Matter
Strong local networks can help reduce isolation and improve wellbeing.
Prevention Is Better Than Crisis Management
Supporting carers early can prevent breakdowns in caring arrangements and reduce pressure on services.
Conclusion
The East Sussex Carers Voices Event was an excellent example of what can happen when carers, professionals and decision-makers come together to listen, learn and work collaboratively.
Throughout the day, carers shared powerful stories of resilience, commitment and compassion. They also spoke honestly about the challenges they face and the changes they want to see. I also recognised Agi who does lots of work raising carer awareness in Sussex, she recently spoke at my national ethnic mental health carers forum. So it was great to see her there.
Dr Neil Churchill’s leadership as host helped create an environment where carers felt able to speak openly and where decision-makers could hear directly from those with lived experience.
As Carers Week 2026 comes to a close, the challenge now is to turn these conversations into meaningful action. Carers should not have to struggle to be recognised, supported or heard.
The event demonstrated that when carers’ voices are placed at the centre of discussions, better solutions can emerge for everyone.
Thank you to Care for the Carers, all speakers, volunteers, professionals and carers who contributed to such a valuable and inspiring day.
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
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.
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.
A Caring Mind 