Tag Archives: voluntary sector

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.

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.

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.