Tag Archives: carer awareness

Hospital Carer Discharge Meeting – March Update 2026

By Matthew McKenzie (Chair)

I chaired our March hospital discharge network meeting with a real sense of momentum building across the system. What continues to strike me is the mix of voices in the room, commissioners, carers centres, hospital representatives, and grassroots advocates all trying to tackle the same persistent issue: how we properly involve and support unpaid carers during and after hospital discharge.

As someone with lived experience, particularly in mental health and complex care, I always come back to one key question:
Are carers being treated as partners, or are they still being treated as visitors?

This meeting gave us a very honest answer progress is happening, but there is still a long way to go.


Key Presentation: Derbyshire HConnect Project

Emma’s presentation was, for me, an important part of the meeting not because it introduced something completely new, but because it clearly articulated what many carers have been saying for years, and then actually did something about it.

What stood out immediately was that this wasn’t a project designed in isolation. It was built directly from carer voice and lived experience. The starting point wasn’t “how do we improve discharge?” it was “what are carers actually experiencing right now?”

And what carers described was difficult to hear, but not surprising.

Carers spoke about not being recognised at all. Some said no one had even asked if they were a carer. Others described situations where their knowledge of the person they care for was ignored, even when it was critical. One example that stayed with me was a carer describing their loved one being discharged in the middle of winter, late at night, without proper clothing or preparation.

There was a consistent feeling that once someone enters hospital, the carer’s role is almost paused or worse, dismissed entirely.

What the HConnect project does differently is acknowledge that this isn’t just a communication issue it’s a system and culture issue.

Instead of relying on one intervention, the model works across multiple layers of the hospital system. It introduces dedicated hospital liaison workers who build relationships with wards, while also ensuring carers themselves are visible and supported directly on-site. At the same time, it invests in staff through training, guidance, and practical tools so that engaging carers becomes part of everyday practice rather than an optional extra.

What I found particularly important is that the project doesn’t assume staff are unwilling—it recognises that many staff simply lack the confidence, knowledge, or structure to engage carers properly. In fact, the findings showed that many hospital teams had never received any formal carer awareness training and were often unaware that carers even have a legal right to be involved in discharge planning.

The research element of the project adds another layer of depth. Through interviews with carers, several consistent themes emerged.

Carers described feeling invisible—treated as visitors rather than partners in care. They talked about their expertise being dismissed, even when they knew the patient best. Communication was often unclear or inconsistent, and discharge frequently felt rushed, with little notice or preparation. In many cases, carers ended up acting as the safety net catching mistakes, coordinating care, and managing complex needs on their own once the person returned home.

What struck me most is that these issues aren’t just isolated incidents they are patterns.

But importantly, the presentation didn’t just focus on what’s going wrong. It also highlighted what good looks like. In situations where carers were listened to, involved early, and treated as equal partners, the entire experience changed for both the carer and the patient. The challenge now is making that level of practice consistent, not exceptional.

The project is already showing tangible impact. There has been a noticeable increase in carers being identified within hospital settings, more referrals coming directly from health professionals, and hundreds of carers receiving support through the programme.

For me, the biggest takeaway from this presentation is this:

This isn’t about adding more services it’s about changing behaviour across the system.

The HConnect model recognises that for carers to be properly involved, three things need to be in place: staff need the capability to identify carers, the opportunity within the system to engage them, and the motivation to see this as a core part of care. Without all three, change simply won’t stick.

And that’s why this work matters. Because until carers are consistently seen, heard, and included, we will continue to see the same issues repeating no matter how many initiatives we introduce.


Lewisham Commissioner Update

From Lewisham’s commissioning side, there were some strong practical developments.

A key initiative is the rollout of a carer welcome pack, designed to be:

  • Clearly visible in hospital settings
  • Easily accessible to carers at the point of need

This is being strengthened through:

  • Increased collaboration with hospital staff
  • Plans to expand distribution across wards

From Lewisham, we also received a really significant update around system-level change, particularly the development of a Standard Operating Procedure (SOP) for engaging unpaid carers in hospital settings.

This work has been led across South East London ICB, with an external partner supporting the design. The aim of the SOP is to provide:

  • Clear guidance to hospital wards
  • Practical prompts and questions for staff
  • A consistent approach to identifying and engaging carers during hospital stays

What stood out to me is that this isn’t just a document, it’s designed to change behaviour on the ground. It focuses on something simple but powerful:
how staff start conversations with carers and recognise the people already supporting patients.

In Lewisham, University Hospital Lewisham was selected as one of the pilot sites, with two wards testing the approach. The next stage is particularly important:

  • The SOP is being embedded into Trust templates
  • It is due to be presented to the Trust board for formal approval
  • There are plans to roll this out across Lewisham and Greenwich NHS Trust, including Queen Elizabeth Hospital (Woolwich)

What I found especially encouraging is that carers have been involved throughout:

  • Input gathered through workshops
  • Further feedback taken to the Lewisham Council’s Open Carers Forum
  • Ongoing opportunity for boroughs to adapt the SOP to local needs

Alongside this, Lewisham is continuing practical work on the ground:

  • Strengthening links between commissioned carers services and hospital staff
  • Expanding visibility through carer welcome packs and information points within the hospital

For me, this is one of the most important developments discussed in the meeting. If implemented properly, a shared SOP like this has the potential to:

  • Reduce inconsistency across wards
  • Embed carer identification into everyday practice
  • Move us closer to a system where carers are routinely recognised—not accidentally discovered

Hospital Update: Lewisham & Greenwich NHS Trust

A really important contribution came from the patient experience perspective at Lewisham and Greenwich NHS Trust, which covers University Hospital Lewisham and Queen Elizabeth Hospital (Woolwich).

From the Trust side, there was clear recognition that:

  • The work carers are doing is valuable and essential to patient outcomes
  • There is a need to improve physical visibility of carer support within hospital settings
  • Space and infrastructure need to better support engagement (for example, identifying a permanent location for carer engagement and resources)

There was also a willingness to:

  • Explore how carer-led engagement (including my own involvement) can be better embedded within the hospital environment
  • Strengthen links between patient experience teams and carers organisations

From my perspective, this was a positive and practical discussion. Too often we talk about engagement in theory—but here we were talking about where the table actually goes on the ward, and that level of detail matters.

Because if carers can’t see you, they can’t access you.


Greenwich (Commissioning & Mental Health)

Greenwich colleagues spoke about their broader system approach, particularly within mental health.

Their focus includes:

  • Identifying gaps in carer support across services
  • Embedding carers within commissioning priorities
  • Understanding what carers themselves want from local systems

They also posed an important question to the group:
What should local authorities prioritise for carers?

My answer was straightforward:
We need clear leadership and accountability, a named person or role responsible for carers across the system.

Without that, good work risks becoming fragmented.


Lambeth Carers Hub (King’s College Hospital & St Thomas’ Hospital)

Lambeth shared a detailed and honest update regarding their work across King’s College Hospital and Guys and St Thomas Hospital

Key points included:

  • Their hospital discharge project is continuing, but with reduced capacity due to funding constraints
  • They have secured a short-term extension, allowing work to continue until September
  • A major focus is now embedding carer awareness training into staff induction processes

Importantly, they raised a systemic issue:

  • The need to hold commissioned care agencies accountable, particularly when carers report poor-quality care after discharge

This is critical. Discharge doesn’t end at the hospital door—if the care package fails, the whole system fails.


Southwark Council Update

From Southwark, we heard about work being done at a system level, particularly linked to:

  • Development of discharge information resources across South East London
  • Collaboration across boroughs and NHS partners

The intention is for these resources to be:

  • Widely accessible and adaptable
  • Used across multiple organisations, rather than siloed locally

Given the proximity to major hospitals like King’s College Hospital and GSTT hosptal, this kind of coordinated approach is essential.


City & Hackney Carers Centre (Homerton Hospital)

A more concerning update came from City & Hackney, particularly regarding work linked to Homerton Hospital.

They reported:

  • The loss of a hospital discharge worker role
  • A significant drop in referrals to the carers centre as a result
  • Reduced presence within the hospital environment

This clearly demonstrates something we often say but don’t always quantify:

When you remove dedicated roles, you remove outcomes.

The worker’s presence had been directly contributing to engagement and referrals. Without that, carers are once again at risk of being missed.


Richmond Carers Centre (Kingston Hospital)

Updates from Richmond Carers Centre highlighted both strong engagement and opportunities to build further.

Positives:

  • Strong referral pathways coming through from Kingston Hospital, particularly linked to discharge activity
  • Ongoing professional awareness work, helping improve understanding of carers across services

There is a clear foundation here, with established relationships already supporting carers into services. The opportunity now is to build on that by increasing visibility and strengthening in-hospital engagement further.


Richmond Borough Mind (Springfield Hospital – SWLSTG)

From Richmond Borough Mind, the focus was more specifically on their work within South West London and St George’s Mental Health Trust (SWLSTG), particularly at Springfield Hospital.

Key challenges highlighted:

  • Difficulty accessing wards within Springfield Hospital, limiting direct engagement with carers
  • Limited contact with carers when based in general hospital areas rather than embedded on wards
  • Ongoing challenge in identifying where carers are most visible and reachable within mental health settings

What came through strongly is that, despite proactive efforts such as setting up stands and being present on-site, footfall from carers remains low unless services are embedded directly into ward environments.

This reinforces a key point for me:

In mental health settings especially, access is everything—if you’re not where carers are, you simply won’t reach them.


Bexley Carers (Post-Discharge & Reablement Focus)

Bexley brought an important perspective that often gets overlooked what happens after discharge.

Their work is focusing on:

  • Supporting carers once reablement packages end
  • Recognising that carers often deprioritise themselves during discharge, only to struggle later
  • Increasing concern around safeguarding and mental health, particularly in dementia care

This is where we need to shift thinking:
Discharge is not the endpoint—it’s the start of a new phase of care.


Cross-Cutting Reflections

Across all updates, several consistent themes emerged:

  • Inconsistent carer identification across wards and trusts
  • Funding fragility, with projects often short-term
  • Need for embedded training, not optional sessions
  • Importance of visibility within hospital environments
  • Gaps in post-discharge support, especially after reablement

My Closing Thoughts

Chairing this meeting, I was struck by both the progress and the gaps.

There is innovation happening in Derbyshire, in Lambeth, in Lewisham, across South East London. But it’s uneven. And carers feel that inconsistency every day.

For me, the priority remains clear:

  • Identify carers early
  • Involve them properly
  • Support them beyond discharge

Because when we get that right, everything else improves—outcomes, safety, and experience.

And until we get that right consistently, we still have work to do.

Shaping the Future of Support for Unpaid Carers in Lewisham

By Matthew McKenzie FRSA BEM – Triangle of Care community chair

As a carer living in Lewisham, I know just how important it is that our voices are heard and that the support available truly meets our needs. Whether we’re looking after a parent, a partner, a child, or a friend, we all share the same challenges balancing care responsibilities, work, our own wellbeing, and often feeling invisible in the process.

That’s why I wanted to share something that directly affects all of us. Lewisham Council and the NHS South East London ICB are currently developing a new Action Plan for Unpaid Carers (2025–2028). This plan will set out how the Council aims to identify, value, and support more carers over the next few years.

The team leading this work, including a new member who recently joined the Adults Integrated Commissioning Team, is reaching out to carers across the borough to get our feedback.

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The Power of Lived Experience and Carer Voices in Healthcare: A Conversation with Hannah Codogin

By Matthew McKenzie – Carer activist

In a recent interview, Matthew McKenzie sat down with Hannah Codigan, a palliative care nurse who brings a unique perspective to healthcare, not only as a professional but also as someone with lived experience of serious mental illness. Together, they explored the importance of recognising unpaid carers and embedding lived experience voices in the design and delivery of healthcare services.

Caring Beyond the Patient

Hannah shared how her role in hospice care extends beyond patients to include families and carers who often struggle without recognition. She emphasised that carers need as much emotional and practical support as the people they care for, noting how time pressures in nursing can make it difficult to truly listen to their experiences.

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Interview with Elsie

Caring for a loved one is a role that often goes unseen and undervalued. In this interview, Matthew McKenzie speaks with Elsie, a 73-year-old carer and activist, about her journey as an unpaid carer, the challenges she’s faced, and her mission to support others walking the same path.

Standing Strong for Carers’ Rights

Elsie refuses to be silenced. Though at times labeled as a “persistent, unreasonable complainer,” she sees her persistence as a duty to her loved ones and to other carers. For her, raising concerns is about advocating for better care and systemic improvements.

Her advice to carers is simple but powerful:

  • Trust your instincts.
  • Don’t give up until your loved one gets the right care.
  • Learn about carers’ rights and stay engaged in decisions.

Finding Strength in Words

In a deeply moving moment, Elsie shared a poem she had written for the Book of Remembrance at Honor Oak Crematorium, in memory of her son. Her words reflect not only grief but also strength, love, and the motivation to keep advocating for change.

You’ll always be our hero.
Although you’re gone, we’re not apart.
Our love for you keeps going,
It stays deep within our hearts.

Football, food and fishing
Were what it was all about.
Blue is the color,
Come on, you lions, to shout.

Carers Week 2025: Supporting Unpaid Mental Health Carers

Help raise awareness for unpaid mental health carers during Carers Week 2025. Learn how to support and recognize their vital, often unseen role in society. To watch the video of this blog, click the video below

Recognizing the Unseen: The Vital Role of Unpaid Carers in Mental Health

Every year, Carers Week serves as a powerful reminder of the millions of individuals who dedicate their lives to supporting loved ones with health challenges often without recognition, compensation, or adequate support.

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World Parkinson’s Day 2025: Driving Awareness for Parkinson’s Disease

Welcome to another blog and awareness video by carer activist Matthew McKenzie FRSA BEM. If you wish to see the awareness below, please click below.

Raising Awareness: The Unseen Heroes of Parkinson’s Disease

Parkinson’s Disease, a progressive neurological condition predominantly affecting movement and coordination, often evokes the imagery of tremors and physical discomfort. Yet, beyond these visible symptoms lies an intricate complexity that reshapes daily life for both those diagnosed and the caregivers – the unsung heroes standing resiliently behind them.

As we mark World Parkinson’s Day 2025, it is imperative to delve deep into the unseen facets of this journey, particularly focusing on driving and the often-overlooked unpaid carers who tirelessly offer support, love, and patience against formidable odds.

Understanding Parkinson’s Disease: A Complex Condition

Parkinson’s Disease is more than an ailment of tremors. This progressive neurological disorder brings with it a range of symptoms that affect mobility, movement, and coordination, making daily tasks increasingly challenging. However, that’s merely the surface. The true complexity of Parkinson’s lies in its unpredictable nature, no two journeys are the same. Each individual experiences a unique set of challenges, and by extension, so do their families and carers.

The Impact on Mobility and Beyond

While the loss of coordinated movement is a significant indicator, Parkinson’s Disease affects much more than the physical. It impacts daily activities, altering how individuals interact with their environment and the people around them. This transformation extends beyond the individual, touching families and communities and reshaping relationships in profound ways.

The Role of Unpaid Carers: Strength and Resilience in Silence

For every person diagnosed with Parkinson’s Disease, there usually stands an unpaid carer – a partner, child, friend, or close companion who navigates this journey alongside them. These carers exhibit an unwavering commitment marked by strength and resilience, often facing their own set of challenges including emotional, physical, and financial strains. It is crucial to acknowledge their dedication and raise awareness about the indispensable role they play.

Life Beyond Diagnosis: A New Normal

Carers find their lives dramatically altered as they take on responsibilities that extend far beyond regular caregiving duties. There’s no clocking out, no salary, and hardly any spotlight. Carers prioritize the needs of the person with Parkinson’s above their own, often dealing with the emotional toll of the disease. They embody strength – the kind needed to wake up each day and face unknown variables, to push forward despite physical and emotional exhaustion.

The Intersection of Parkinson’s and Driving: Independence and Freedom

Driving symbolizes independence, connection, and freedom – aspects that those living with Parkinson’s struggle to hold on to. For many, driving is more than a convenience; it is a crucial part of their identity and autonomy. However, the progression of Parkinson’s can compromise these abilities, bringing about new challenges and fears.

The New Role of Carers in Mobility

Carers play a significant role in helping to navigate this new reality. They advocate, co-pilot, and sometimes take over the wheel in both a literal and emotional sense. Their support becomes an anchor for the person with Parkinson’s, helping them maintain some semblance of independence and connection with the world.

The Collective Effort: Parkinson’s UK and Global Initiatives

World Parkinson’s Day is spearheaded by a global alliance comprising approximately 80 Parkinson’s organizations, unified in their mission to raise awareness and advocate for those affected. Parkinson’s UK stands at the forefront of this initiative, leading the fight for better care, support, and services. They emphasize the importance of community, providing expert guidance and an invaluable support network for both patients and carers.

Advocacy and Community Support

These organizations work tirelessly to promote awareness, engage in advocacy efforts, and foster a sense of community. They provide a platform for those affected by Parkinson’s to share their experiences, find support, and fight for a better quality of life. Through these collective efforts, the aim is to ensure that no one faces this journey alone.

A Call to Action: Recognizing and Supporting Carers

As we commemorate World Parkinson’s Day, it is essential to recognize the people standing behind those with Parkinson’s. These carers often carry a significant portion of the burden, usually unnoticed and unacknowledged. Raising awareness about their contributions is vital to ensure they do not have to bear this weight in silence.

Driving Forward Together

The road ahead requires a collective effort to drive forward, not just physically but in terms of societal understanding and support. It’s about creating a world that truly acknowledges the challenges of living with Parkinson’s and equally the dedication of those who love and care through its trials. Together, by sharing this mission, we can make a meaningful difference in the lives of individuals with Parkinson’s and their carers.

Thank you for taking the time to read and understand the multifaceted journey of Parkinson’s Disease on this World Parkinson’s Day 2025. Let’s continue to support, advocate, and drive forward towards a better world for those living with and caring for Parkinson’s Disease.

Challenges Carer Centres face

Understanding Unpaid Carers and the Vital Role of Carer Centers

This blog is by carer activist Matthew McKenzie. In the UK, millions of people, often unnoticed and unappreciated, dedicate their lives to caring for family members with long-term physical or mental health conditions. These unpaid carers are the backbone of the caregiving system, yet they face numerous challenges daily. Here, we delve into the crucial role of carer centers, the obstacles they encounter, and potential solutions to sustain and enhance their vital services.

What is a Carer Center?

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Carers Week 2024 – Help put carers on the map

Hello everyone. I am Matthew McKenzie, Carer Activist, poet and author. Volunteer for Carers UK, Carers Trust and Macmillan Cancer support to raise awareness of unpaid carers using my lived experience of caring.

At the time of this blog post it is Carers Week 2024. Carers Week 2024 could not arrive at such a better time, especially with an election happening.

For Carers Week 2024, the theme is “Putting Carers on the Map”. I know many carers are facing so many challenges in their role. This could be down to difficultly providing unpaid care, getting engagement from health & Social care services or even being identified as carers.

Many carers up and down the country can be easily hidden, they carry on with their caring role unaware of the support that can be offered to them.

With an election due to take place, the chance to put carers on the map has never been greater. It is an excellent chance to use our voices, experience of care and connections to continue to raise awareness.

So I am counting on many to help raise that much needed awareness of Carers Week. If you are a carer, health professional or someone with lived experience, it might be worth looking out for events from 10th of June to the 16th of June.

I will continue to write and promote carer events nationwide and do all I can to help raise awareness of carers, I hope you can as well. You can sign a pledge on the Carers Week website or you can run an event yourself. There is nothing too small to place carers on the map.

Poem for Carers Week

For carers week to share
It helps to be aware
That if you really care
Listen up for your own welfare

Its best you are not ignored
Noted a carer to be on record
For support is your reward
So social care back onboard

For Carers week is here
With events to promote and shareb
Its worth attending, just be there
To learn about unpaid care

So please dont be ignored
It something you cant afford
Support and help explored
Faith in the system restored