Tag Archives: family carers

National Cancer Caregiver Forum – October 2026 Update

By Matthew McKenzie – Facilitator of Cancer Caregiver group

Welcome to the October update from my National Cancer Caregiver Forum, reflecting on our meeting held on 30 September.

I chair this forum to help bring greater attention to the experiences of people supporting someone living with cancer. Cancer care can involve a whirlwind of appointments, investigations, treatment decisions and changes at home. Behind all of this, family members, partners and friends often provide considerable practical and emotional support.

Yet their own needs can remain hidden.

Our latest meeting brought together carers, a representative from the South East London Cancer Alliance and trainee clinical psychologist Lara Pope. We explored how carers can navigate services, how their experiences can inform improvements, and why support for their own wellbeing needs to be more visible.

Hearing from the South East London Cancer Alliance

We welcomed a programme lead from the South East London Cancer Alliance, whose work includes patient experience, involvement and inequalities.

The discussion acknowledged an important gap: while services collect information about patients’ experiences of cancer care, there has been less information available about the experiences of those supporting them.

To help address this, colleagues from several Cancer Alliances worked with carers to develop a cancer carers survey. The aim is to understand the impact of caring, identify unmet needs and explore whether experiences differ between areas.

At the time of our meeting, approximately 150 responses had been received across the participating areas. We were told that the survey would remain open until the end of October.

Early responses were highlighting the emotional impact of caring, the pressure of managing appointments and responsibilities, and difficulties accessing support. These were emerging themes rather than final findings.

The Alliance also explained that the findings could help inform conversations with clinical teams and national colleagues. Some improvements might involve clearer communication or different ways of working, alongside identifying gaps in services.

For me, the important next step is ensuring that carers can see what happens after they contribute. Sharing experiences should lead to feedback, discussion and opportunities to influence change.

Cancer carers survey:
https://www.surveymonkey.com/r/8ZV8DN3

Reaching carers before they become overwhelmed

We discussed how hospitals, cancer information centres, clinical nurse specialists, hospices and community organisations could help people find support.

One challenge is that many people do not describe themselves as carers. They see themselves as a husband, wife, partner, daughter, son or friend doing what needs to be done.

That is understandable. However, it can mean they miss information or support advertised specifically for “carers”.

Services need to explain what support is available in language that people recognise. Asking someone whether they help a loved one with appointments, medication, daily activities or emotional support may open a conversation that the word “carer” alone does not.

The discussion also recognised that attending a forum is not always easy. Some people are exhausted, some are still processing a diagnosis, and others want their limited free time to offer a break from talking about cancer.

This makes it important to offer different ways to connect, including written updates, individual conversations and opportunities to contribute when people feel ready.

My presentation: navigating cancer services without being excluded

During the meeting, I gave a short presentation on “Navigating cancer services without being excluded.”

Drawing on my caring experiences and work with unpaid carers, I focused on some practical questions for people who may be new to the role.

Exclusion can happen when the person providing care at home is overlooked, when information is difficult to understand, or when nobody explains who to contact next.

Carers may then find themselves trying to coordinate support without a clear picture of how the system works.

Five questions formed a central part of the presentation:

Have you recorded me as the person providing support?
What do I need to know to support care safely at home?
Who should I contact if something changes?
What information can be shared with me, with the patient’s consent?
Where can I get support for my own wellbeing?

These questions will not resolve every difficulty, but they can help begin conversations about recognition, communication and support.

The final question matters especially. Carers’ health can easily slip down the list while they concentrate on the person they love.

When carers become the link between services

An important theme was the amount of coordination that can fall to families.

Carers described having to keep track of appointments, help explain medical histories, learn unfamiliar terminology and make sure information reaches the right professional.

One contribution highlighted how different record systems can leave families helping clinicians locate information from another hospital. Others described the strain of repeatedly explaining what had already happened.

There were also positive experiences. Specialist cancer teams were described as listening to carers and including families in discussions. However, that sense of inclusion was not always consistent across other parts of the system.

This raises an important question: how can good carer involvement follow the person throughout their care, rather than depend on which service they happen to encounter?

Even someone familiar with health and social care can feel overwhelmed when supporting a loved one through cancer. Knowledge of the system does not remove the emotional pressure.

Hospital discharge and preparing for care at home

The move from hospital to home was another significant part of our discussion.

For a carer, discharge may bring new responsibilities around medication, side effects, appointments and knowing when to seek help. Coming home can be frightening if the family does not feel prepared.

We discussed the importance of clear explanations and knowing who is responsible for the next step.

A discharge plan needs to take account of the person who will provide support at home, including what they understand, what they feel able to do and what help they need.

Contributions also illustrated how delays and communication failures can create additional distress. Carers need opportunities to raise concerns and receive clear answers about what is happening.

Carers’ own health must remain part of the conversation

We heard how easily carers can put their own health needs on hold.

When someone is seriously unwell, it can feel impossible to step away for an appointment, treatment or rest. Carers may feel that nobody else can provide the same support, or worry about what will happen during their absence.

The discussion reminded us that exhaustion can remain hidden behind a person who appears organised and capable.

Supporting a carer means asking about their wellbeing and helping them think through practical arrangements. It also means recognising that a carer may have health conditions or treatment needs of their own.

Carers should not have to reach a crisis before their needs are noticed.

Peer support and advocacy

Peer support was described as a lifeline.

Speaking with people who understand caring can provide space to acknowledge the pressure, exchange practical ideas and feel less alone.

However, we also discussed the need for stronger advocacy. Sometimes a carer needs someone alongside them who understands services, can help them prepare questions and support them to raise concerns.

One practical suggestion was to keep a notebook containing appointments, contact details, questions and information given by professionals. When events move quickly, having a record can help carers return to something they need clarified.

Participants also highlighted positive experiences of support from St Christopher’s. This prompted discussion about possible future connections and how the forum could help organisations learn from one another.

Lara Pope’s request: please help share her research

We also welcomed Lara Pope, a third-year trainee clinical psychologist at the University of Hertfordshire, who is undertaking research for her thesis.

Lara spoke about her research into partners’ experiences in the context of gynaecological cancer. She also described the difficulty of finding relevant support groups, which underlined our wider discussion about how hard it can be for families to locate support.

At the end of the meeting, Lara asked whether I could share her research again. She explained that she had made minor amendments to her ethics documentation and would be grateful for another opportunity to raise awareness.

Our meeting took place on the final day of Gynaecological Cancer Awareness Month. Lara hoped to build on that awareness and keep attention on experiences that may be difficult to discuss or remain overlooked.

Please see Lara’s latest research invitation below for the full eligibility criteria, what participation involves and how to contact her.

At our forum, Lara asked for help sharing the research again following minor amendments to her ethics documentation. Understanding partners’ experiences could help draw attention to needs that are often overlooked.

If you are interested in participating, please contact Lara for the latest eligibility criteria and information about what taking part involves:

Email: l.j.pope@herts.ac.uk

You can also read my earlier blog introducing Lara’s research.

If you work with a carers’ organisation, cancer support group or relevant community network, please consider sharing the updated invitation with people who may be interested. Anyone considering taking part should read the study information and contact Lara directly with questions.

Continuing to build the forum

This forum is still growing, but the discussion showed the value of bringing carers, researchers and services together.

It offers a space to exchange information, identify gaps and help carers contribute to conversations about how support could improve.

Future discussions could include hearing from other Cancer Alliances, hospice carer services, hospital teams and organisations supporting carers in the community. These were suggestions raised during the meeting, rather than confirmed speakers.

I would particularly like to strengthen the links that help people find the forum and ensure that carers’ experiences reach those responsible for developing services.

Join a future meeting

The National Cancer Caregiver Forum meets online on the last Wednesday of each month at 5 pm.

The next meeting is scheduled for Wednesday 28 October 2026 at 5 pm. Joining details and speaker information will be shared nearer the time.

Thank you to everyone who contributed to our September discussion, and to those helping raise awareness of the forum.

Cancer caregivers bring knowledge, commitment and experience that services need to hear. They also need recognition and support for themselves.

Black Maternal Mental Health Week 2026: Black Mothers and Unpaid Carers Must Be Heard

By Matthew McKenzie, A Caring Mind

21–27 September 2026 | Joy • Justice • Journey

Black Maternal Mental Health Week is a chance to celebrate Black mothers and speak honestly about the inequalities they can face when seeking support. This year’s theme, Joy • Justice • Journey, reminds us that a mother’s mental health matters before, during and long after birth.

For some Black mothers, asking for help can mean overcoming stigma, cultural misunderstanding, racism or the fear that their concerns will be dismissed. Support needs to arrive early, and services need to listen to what mothers say about their own lives.

I also want to recognise unpaid carers. A partner, parent, sibling or friend may notice when a mother is struggling, help her manage daily life and support her through appointments. Yet carers can feel exhausted or excluded when they try to ask questions. A mother’s wishes and confidentiality must remain central, while the people she trusts should be included in her care when she wants them there.

Black Maternal Mental Health Week UK is founded and led by The Motherhood Group, with Mumbrite supporting this year’s programme. The Motherhood Group is also working with the Maternal Mental Health Alliance and Centre for Mental Health on a separate project examining inequalities in Black maternal mental health care.

I have made a short video reflecting on the week, racial inequalities and the importance of hearing both Black mothers and unpaid carers:

If you are pregnant or have recently given birth and are worried about your mental health, speak to your midwife, health visitor or GP. You can also read the NHS guide to mental health care before, during and after pregnancy. Unpaid carers can contact Carers UK for information and signposting.

The week ends on 27 September, but listening and changing services must continue beyond it. Black mothers deserve care that takes their concerns seriously. Unpaid carers deserve to be heard and supported too.

World Alzheimer’s Day 2026: Remembering the Carers

To mark World Alzheimer’s Day, I have produced a new A Caring Mind video focusing on the unpaid carers supporting relatives and friends living with Alzheimer’s disease and other forms of dementia.

Alzheimer’s is a progressive neurological disease rather than a mental illness. However, its emotional and psychological impact can be profound—not only for the person diagnosed, but also for those caring beside them.

The video explores the importance of earlier diagnosis, including carers in decisions, recognising anticipatory grief and connecting families with appropriate support. It also highlights organisations such as Alzheimer’s Society, Dementia UK, Carers UK and Carers Trust.

Carers may manage appointments, medication, personal care, changing behaviour and difficult decisions, often without enough information or support for their own wellbeing.

World Alzheimer’s Day gives us an opportunity to challenge stigma, listen to people affected by dementia and recognise the contribution of unpaid carers.

Neither the person living with dementia nor the carer walking beside them should be forgotten.

#WorldAlzheimersDay #DementiaAwareness #UnpaidCarers #CarerSupport #ACaringMind

Why Black Carers Struggle to Access Mental Health Support

By Matthew McKenzie

Black unpaid carers can face significant barriers when trying to access mental health support for themselves or the person they care for.

These difficulties may include long waiting times, financial pressure, cultural stigma, fear of statutory services and a shortage of professionals who understand the effects of racism, racial trauma and culturally specific caring experiences.

In my new video, I examine how misdiagnosis, over-policing and expectations that Black families should simply remain “strong” can create mistrust and discourage carers from asking for help.

Drawing on my perspective as a Black lived-experience carer, I also consider what mental health services can do differently. Genuine improvement requires culturally responsive support, greater representation, safe spaces for carers, accessible community-led services and meaningful partnership with Black carers and families.

PCREF provides an important opportunity to challenge racial inequalities, but its success will depend on whether services listen to lived experience and turn commitments into visible action.

Triangle of Care Community Meeting: July 2026 update

By Matthew McKenzie – Triangle of Care – Community group chair

Putting Carers at the Centre of Care

The latest Triangle of Care Community Group brought together carers, professionals and partner organisations from across England to share learning, celebrate progress and identify where further improvements are needed. The meeting highlighted the growing influence of the Triangle of Care across mental health and acute services, whilst reinforcing that there is still much work to do to ensure carers are consistently recognised, valued and supported.

One of the most powerful aspects of the meeting was hearing directly from carers about their experiences. Whilst many spoke positively about the progress that has been made over recent years, there was a shared view that carer involvement remains inconsistent across services. Carers described feeling more included than ever before, with greater awareness of the Triangle of Care principles and more opportunities to participate in steering groups, service developments and community discussions. However, concerns remain around automatic carer identification, information sharing and ensuring that carers are genuinely recognised as partners in care.

Several carers reflected on the importance of having their voices heard early in a patient’s care journey. Examples were shared of services introducing carer contribution templates that ensure family members are involved within 72 hours of admission, whilst others highlighted improvements to confidentiality processes that allow patients to determine what information can be shared with carers at different stages of their recovery. These practical changes demonstrate how relatively small adjustments can have a significant impact on relationships between carers, patients and professionals.

Progress Across the Triangle of Care Programme

Mary Patel, Triangle of Care Programme Lead at Carers Trust, provided an update on developments across the national programme. The Triangle of Care continues to grow, with a number of organisations progressing through the STAR accreditation process and demonstrating their commitment to embedding carer-inclusive practice across services.

Importantly, members were reminded that the STAR awards are not designed to rank organisations, but instead reflect the breadth of implementation across different service areas. STAR I focuses primarily on inpatient and crisis services, STAR II expands into community services, whilst STAR III recognises organisations delivering integrated services across multiple clinical areas.

Several trusts have recently achieved STAR awards, whilst others are progressing through the assessment process over the coming months. The programme’s peer review approach continues to ensure that carers remain central to the assessment process, with carers actively involved in reviewing evidence, identifying good practice and making recommendations for future development.

The Triangle of Care Member Hub continues to provide valuable opportunities for peer learning, resource sharing and collaborative working. Upcoming webinars will include sessions exploring Open Dialogue approaches developed by Devon Partnership NHS Trust, providing members with further opportunities to learn about therapeutic models that place families and carers at the heart of care planning.

Advancing Equality Through the Patient and Carer Race Equality Framework

A significant development announced during the meeting was the launch of Phase Two of the Triangle of Care and Patient and Carer Race Equality Framework (PCREF) project.

PCREF represents the first mandatory anti-racism framework within mental health services in England. Recognising that carers from racially marginalised communities often experience poorer outcomes and face additional barriers when accessing support, the Triangle of Care programme has been working collaboratively with carers and mental health providers to strengthen the way services assess and respond to carers’ needs.

The revised self-assessment framework encourages services to move beyond assumptions and adopt a more professionally curious approach to understanding carers’ individual experiences. Rather than viewing carers as a homogenous group, the framework recognises that caring experiences are shaped by culture, identity, language, personal circumstances and wider health inequalities.

Pilot sites from across England are now testing the revised guidance, with learning being shared nationally throughout the project. Importantly, organisations do not need to be participating in the pilot to begin implementing the principles and learning that emerge from this work.

Alongside PCREF, Carers Trust continues to contribute to national policy developments, including the Modern Service Framework for Severe Mental Illness and the forthcoming Mental Health Strategy for England. Throughout these discussions, there has been a consistent message that carers must be recognised as partners in care and have access to appropriate support in their own right.

Confidentiality, Information Sharing and Carer Inclusion

Confidentiality remained one of the most prominent themes throughout the meeting. Whilst participants acknowledged the importance of protecting patients’ rights and preferences, carers highlighted that confidentiality can sometimes become a barrier to meaningful engagement.

Several contributors reflected that confidentiality should never prevent professionals from listening to carers’ concerns or receiving valuable information that may support a patient’s care. Others spoke about the importance of revisiting conversations around consent over time, recognising that patients’ preferences may change as their circumstances and wellbeing improve.

Practical examples of good practice included breaking confidentiality discussions down into specific areas, allowing patients to decide what information can be shared about medication, activities, wellbeing and treatment plans, rather than relying on simple ‘yes or no’ decisions. There was also discussion around the importance of staff training to improve confidence when navigating complex conversations around confidentiality and information sharing.

Participants agreed that carers should never be expected to provide significant levels of support without receiving the information necessary to do so safely and effectively. Achieving the right balance between confidentiality and partnership working remains an important priority for the Triangle of Care community.

Triangle of Care Principles Within Acute Services

The meeting concluded with an inspiring presentation from Wendy Doyle, Head of Patient Experience at St George’s University Hospitals NHS Foundation Trust and Epsom and St Helier Hospitals, exploring how Triangle of Care principles can be successfully implemented within acute hospital settings.

Whilst the Triangle of Care originated within mental health services, Wendy demonstrated that its principles are equally applicable across acute care environments. Her organisation supports approximately 19,000 members of staff across multiple hospital sites and has developed a comprehensive approach to identifying, recording and supporting unpaid carers.

Staff are encouraged to identify carers at the earliest possible opportunity, with this information recorded within patient records to ensure continuity throughout the patient’s hospital journey. Comprehensive carer awareness training is delivered through virtual sessions, ward-based education and e-learning resources, helping staff understand both the practical and emotional importance of recognising carers.

Importantly, identifying carers is only the beginning of the process. Every carer recorded within the hospital system receives a follow-up wellbeing check from the Patient Experience Team to discuss their own support needs, identify any challenges and facilitate referrals to local carers’ organisations where appropriate.

Partnership working sits at the heart of this approach, with close collaboration between acute services and local carers’ centres ensuring carers can access a broad range of practical and emotional support. Adult and Young Carers’ Charters have also been co-produced with carers themselves, helping to shape organisational commitments around kindness, inclusion and meaningful engagement.

Perhaps most importantly, Wendy highlighted that supporting carers improves outcomes for everyone. Better communication strengthens discharge planning, reduces avoidable hospital admissions and readmissions, improves patient safety and helps prevent carer burnout. Acute hospital stays can provide valuable opportunities to identify carers who may previously have remained invisible and connect them with longer-term support.

Looking Ahead

The discussions throughout the meeting demonstrated both the progress that has been made and the challenges that remain. There is increasing recognition that carers are essential partners in delivering high-quality care across both mental health and acute services. However, meaningful involvement cannot rely upon individual goodwill alone; it requires consistent systems, robust policies and a genuine commitment to partnership working.

Looking ahead, the Triangle of Care programme will continue to expand opportunities for peer learning, influence national policy developments and support organisations to embed carer-inclusive practices across services. The ongoing work around PCREF and wider mental health policy developments provide important opportunities to ensure that carers’ voices remain central to future service transformation.

Above all, the meeting reinforced a simple but powerful message: carers must not be viewed as an afterthought or an optional addition to care planning. They are experts through experience, invaluable partners in care and individuals with support needs of their own. When carers are identified early, listened to meaningfully and supported appropriately, outcomes improve not only for carers themselves, but for patients, families and services alike.

The Triangle of Care Community Group continues to provide an important space where carers and professionals can learn from one another, challenge existing practices and work collectively towards more compassionate, inclusive and effective care.

Alcohol Awareness Week 2026 – Alcohol and Me

This week (6–12 July) marks Alcohol Awareness Week 2026, organised by Alcohol Change UK. This year’s theme, “Alcohol and Me,” encourages us to take a moment to reflect on our own relationship with alcohol and the impact it can have on our health, mental wellbeing, relationships and everyday lives.

For many unpaid carers supporting someone with a mental health condition, life can be emotionally demanding. While we often focus on the person we care for, it’s just as important to look after our own wellbeing. This campaign reminds us that seeking support, talking openly and making small positive changes can make a real difference.

To support this important awareness week, I’ve created a new video on my YouTube channel, A Caring Mind, exploring why Alcohol Awareness Week matters, particularly for carers and families affected by mental ill health.

If this post resonates with you, please share the video to help raise awareness, reduce stigma and remind carers that their wellbeing matters too.

For more information about Alcohol Awareness Week and the “Alcohol and Me” campaign, visit Alcohol Change UK: https://alcoholchange.org.uk/get-involved/campaigns/alcohol-awareness-week-1

South London Mental Health carer forum update June 2026

By Matthew McKenzie – Chair of the group

If you weren’t able to join our June South London Mental Health Carers Group meeting, here’s a summary of the main discussions and updates. As always, the meeting brought together unpaid carers from across Lambeth, Lewisham, Southwark and Croydon to share experiences, raise concerns and keep each other informed about developments affecting mental health carers.

Why these meetings matter

One of the strongest themes throughout the meeting was the importance of carers staying connected. Many carers cannot attend every committee or involvement meeting due to their caring responsibilities, work or other commitments. By sharing updates, we can help ensure everyone remains informed about changes that may affect them and the people they support.

Several carers commented that services sometimes feel like they are “reinventing the wheel”, with the same issues being raised repeatedly. While progress can be slow, continuing to speak up and share experiences remains essential.

Updates from the Maudsley Family and Carers Committee

Carers who attended the latest South London and Maudsley (SLAM) Family and Carers Committee shared several important developments.

Review of the Involvement Register

SLAM is reviewing its Involvement Register over the coming months. Working groups will look at areas including:

Outcomes
How involvement is delivered
Governance and policy

Carers interested in influencing how services engage with families are encouraged to consider joining the register. Participation is flexible, allowing carers to contribute when they are able.

Triangle of Care

The Triangle of Care continues to be a significant focus, particularly around how carers are identified, involved and supported during someone’s mental health care.

Discussions also covered how Trusts monitor their progress and how carers’ details are recorded to ensure families receive appropriate information and support.

Information for carers

Work is continuing to improve the information provided to carers. Rather than relying on a single handbook that can quickly become outdated, there are plans to develop more flexible information resources that can be updated more easily and provided when carers actually need them.

Mental Health Act reforms

A significant part of the meeting focused on the recent changes to the Mental Health Act and what they could mean for unpaid carers.

Key topics included:

Greater emphasis on patient choice and involvement.
The introduction of the Nominated Person, replacing the traditional “Nearest Relative” in many situations.
The importance of Advance Choice Documents, allowing people to record their wishes while they are well.
The need for carers to understand their legal rights and ask questions during admissions, treatment planning and discharge.

Carers discussed both the opportunities and concerns arising from these changes, particularly where someone may lose insight during periods of illness. There was broad agreement that carers need clear information about how the reforms will be implemented locally and how families will continue to be involved.

Advocacy and complaints

Members shared experiences of trying to access advocacy services and navigate complaints processes.

Concerns included:

Limited access to independent mental health advocacy in some boroughs.
Unclear complaints pathways.
The need for carers to be listened to, even when confidential information cannot be shared with them.
The importance of raising concerns through appropriate safeguarding and governance routes where necessary.

Several carers also shared positive experiences where persistence had led to improvements in care.

Local updates from across South London

One of the strengths of the South London Mental Health Carers Group is the opportunity for carers from different boroughs to share what is happening locally. While each area faces its own challenges, many of the issues raised were common across South London.

Lambeth

Carers discussed the continuing work of the Lambeth Living Well Collaborative, which brings together carers, service users, voluntary organisations and professionals to improve local mental health services. Members were reminded that carers are welcome to attend collaborative meetings and contribute to discussions about service improvements.

The conversation also recognised the wider pressures affecting carers beyond mental health services. Rising living costs, reductions in council tax support for many working-age residents receiving benefits, and the increasing financial pressures on families continue to affect carers’ wellbeing. These wider social issues inevitably have an impact on people’s ability to sustain their caring role.

Lewisham

Carers provided an update on Lewisham’s Community Mental Health Transformation programme. While work continues to redesign community services, concerns remain about what happens when someone is discharged from specialist mental health services back to primary care.

Several carers highlighted unanswered questions around:

How GPs will be supported to manage people with ongoing severe mental health needs.
What support carers can expect once specialist services are no longer involved.
Whether communication between secondary mental health services and GP practices is sufficiently robust.

These are important questions that carers hope local services will continue to address as transformation plans progress.

Croydon and Lewisham carer information

Members also heard that new information resources for carers are being developed in Croydon and Lewisham. Rather than relying on lengthy booklets, services are creating a series of practical information sheets covering different aspects of mental health care. This approach should allow information to be updated more regularly and provided when carers need it most.

Carers welcomed this change, noting that people often need specific information at different stages of their caring journey rather than receiving a large handbook all at once.

The important role of GP practices

An interesting discussion focused on the role of GP practices in supporting unpaid carers.

Members recognised that experiences vary considerably between surgeries. Some GP practices have developed strong support for carers, while others still have some way to go.

One positive example shared was Wells Park Practice, where carers have become actively involved in developing support, including helping to establish a regular carers’ coffee morning. This demonstrates what can be achieved when GP practices actively engage with carers and recognise the valuable role they play.

The meeting reinforced several practical messages for carers:

Make sure your GP practice knows that you are an unpaid carer and ask to be recorded on their carers register.
Ask what support your surgery offers to carers, including health checks, referrals or local support groups.
If your current practice offers limited support for carers, it may be worth exploring what neighbouring GP practices provide, particularly if they have developed a stronger carers programme.

As community mental health services increasingly work alongside primary care, ensuring that GP practices recognise and support unpaid carers is becoming more important than ever.

Learning from each other

Perhaps the most valuable part of the local updates was hearing how carers are finding solutions in different boroughs. Good practice in one area can often inspire improvements elsewhere.

Whether discussing carers’ information, community transformation, GP engagement or involvement opportunities, the message was clear: carers’ experiences are a vital source of learning, and sharing those experiences helps improve services across South London as a whole.

Looking ahead

One of the biggest messages from the meeting was that carers have valuable lived experience that services need to hear. Whether through local carers’ centres, involvement registers, Trust committees or community groups, every contribution helps shape future services.

If you are interested in becoming more involved but can only contribute occasionally, don’t let that put you off. Many opportunities allow carers to participate as much or as little as their circumstances allow.

Thank you to everyone who attended and contributed so openly. Your experiences continue to help improve understanding and influence services across South London.

We look forward to welcoming both new and returning carers to our next meeting.

Universal Care Plans and Carer Contingency Plans: A New Way to Support Unpaid Carers

By Matthew McKenzie – member of UCP Lived experience group

Many unpaid carers worry about one question: “What would happen if I suddenly became ill or was unable to provide care?” It is a concern that often sits in the background but can cause enormous anxiety.

A new approach being developed across London aims to provide reassurance and practical support. Through the Universal Care Plan (UCP) and the Carer Contingency Plan (CCP), unpaid carers can record important information and make plans so that the people they care for continue to receive support if circumstances change.

What is a Universal Care Plan?

The Universal Care Plan (UCP) is a secure digital care record used across London. It allows important information to be shared with health and care professionals involved in a person’s care.

The plan records information that matters most to the individual, including:

Health conditions and medical information.
Personal wishes and preferences.
Details about family members and carers.
Important contacts.
Information that can help professionals provide better care.

The UCP can help reduce the need to repeat information and ensures that health and care staff have access to information when it matters most.

People of all ages can have a Universal Care Plan, including both carers and the people they support.

26May2026-Final-UCP-Engagement-Leaflets-Carers (1)Download

Introducing the Carer Contingency Plan

For unpaid carers, one of the most valuable developments is the Carer Contingency Plan (CCP).

The CCP allows carers to record what should happen if they are suddenly unable to continue caring because of illness, an emergency or another unexpected event.

The plan can include:

Emergency contacts.
Information about daily routines.
Medication arrangements.
Communication needs.
Important preferences and wishes.
Details about replacement support or family members who could help.

Having this information available means professionals and family members can respond more quickly and with greater confidence during a crisis.

Why is this important for unpaid carers?

Many carers provide support around the clock and often put their own needs last. Yet emergencies can happen to anyone.

A Carer Contingency Plan can:

Provide peace of mind.
Help avoid unnecessary hospital admissions.
Ensure continuity of care.
Reduce stress during emergencies.
Make carers more visible to health and care services.
Improve communication between professionals and families.

Most importantly, it recognises the crucial role unpaid carers play and helps ensure they are not overlooked.

Accessible and Easy to Use

Universal Care Plans and Carer Contingency Plans are designed to be practical and accessible.

Plans can be created:

In hospitals.
In community services.
Through voluntary sector organisations.
By individuals themselves using the NHS App and NHS digital services.

Support materials and guidance are continuing to expand, making it easier for both professionals and carers to understand and use the system.

Working Together Across Health and Care

The UCP and CCP are being used across hospital, community and voluntary sector settings. Their purpose is simple but powerful: to improve communication, support carers and ensure that important information is available when it is needed most.

For unpaid carers, this represents a positive step forward. Carers have long spoken about wanting greater recognition and reassurance that there is a plan in place should something happen to them. The Carer Contingency Plan helps answer that concern.

A Message to Carers

If you support a family member, partner, friend or neighbour, you are not alone. Your role matters, and planning ahead is not about expecting the worst—it is about providing reassurance and protecting the person you care for.

The Universal Care Plan and Carer Contingency Plan offer a practical way to make your wishes known, improve communication with professionals and ensure that support can continue when it is needed most.

If you would like to know more, speak to your hospital’s carers service, community team, GP practice, local carers organisation or ask a member of your health and care team about the Universal Care Plan and Carer Contingency Plan.

Planning ahead today can bring peace of mind tomorrow for both carers and the people they care for.

Help Shape Research on the Experiences of South Asian Families Caring for a Loved One with Disabilities

The FOCUS Project, an international research study exploring the experiences of South Asian families who have a family member with intellectual and developmental disabilities.

Researchers are seeking to hear from:

South Asian parents and family carers
Adult brothers and sisters of people with intellectual and developmental disabilities
Professionals who work with South Asian families and children with disabilities
Families interested in sharing their experiences through surveys and discussion groups

The study aims to improve understanding of the challenges, strengths, and support needs of South Asian families, helping to inform future services and policies.

Ways to Get Involved

Work Package 1 – Family Survey
Take part in an anonymous online survey exploring family experiences. Each section takes approximately 10–15 minutes, and participants can complete one, two, or all three parts.

Work Package 2 – Professional Survey
Professionals working with children and young people with intellectual and developmental disabilities from South Asian backgrounds are invited to share their views on family-oriented partnership practices.

Work Package 3 – Online Discussion Groups
South Asian parents and adult siblings are invited to join a small online discussion group lasting around one hour to share their experiences in more depth.

Your Voice Matters

Every family’s experience is unique. By taking part, you can help researchers better understand the realities of caring for a loved one with intellectual and developmental disabilities and contribute to improving support for future generations.

For more information about the FOCUS Project, please visit the study website or contact the research team at focus.project@uea.ac.uk.

To hear more about the project, they will present at my National ethnic mental health carers forum for the 26th of June. Book via my forum page.

Carers Week 2026 Round-Up

By Matthew McKenzie – Carer, Campaigner, Author and Speaker

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

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

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

9 June 2026 – Developed Video promotion for Carers Week 2026

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

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

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

I was particularly pleased to see the hospital’s dedicated carers information board, which demonstrated a clear commitment to recognising and supporting unpaid carers. Throughout the day, I spoke with many people who were caring for family members and helped raise awareness of carers’ rights, available services and the importance of seeking support. It was a positive start to Carers Week and highlighted the vital role healthcare settings can play in identifying and supporting carers.

10 June 2026 – Ealing Carers Week Celebration at Perceval House

On 10 June, I attended the Carers Week Celebration 2026 at Perceval House in Ealing, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council. As someone who supports both of my elderly parents, I understand first-hand the rewards and challenges of caring. During the event, I had the privilege of hosting a Carers UK information stall while also attending as a carer, poet and author.

The day brought together carers, charities, community organisations, health professionals and council representatives in a welcoming and supportive environment.

Carers had access to information, advice and wellbeing activities, including complimentary refreshments, free manicures provided by Uxbridge College students, artwork exhibitions and opportunities to connect with others who understand the caring journey. The event served as a powerful reminder that carers matter, their voices are important and they should never feel alone.

You can find out more about the event below from Ealing Local Community news

Celebrating carers across the borough

10 June 2026 – Carers Week Parliamentary Drop-In Event, Westminster

Later that day, I attended the Carers Week Parliamentary Drop-In Event at Portcullis House, Westminster. The event brought together unpaid carers, carers’ organisations, MPs and Peers to discuss the realities of caring and the support carers need.

Designed as a speed-networking event, it offered an important platform for carers to share their experiences directly with policymakers and raise awareness of both the immense contribution carers make and the challenges they face. It was encouraging to see parliamentarians engaging with carers and supporter organisations, demonstrating a growing recognition of the need for stronger policies and greater support for unpaid carers across the country.

11 June 2026 – East Sussex Carers Voices Event, East Dean Village Hall

As part of Carers Week, I travelled 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, NHS representatives, local authority leaders, health professionals, carers’ organisations and community groups to discuss how support for carers can be improved.

Hosted by Dr Neil Churchill, Chair of Care for the Carers along with Jennifer Twist CEO of Care For The Carers, the day focused on listening to carers’ experiences and ensuring their voices were heard by decision-makers.

I was honoured to contribute to these discussions and to share insights from my own caring journey. The event demonstrated the value of bringing carers and professionals together to shape services and create positive change for unpaid carers across East Sussex.

12 June 2026 – Speaking at the Cygnet National Carers Event

On 12 June, I had the privilege of speaking at the Cygnet National Carers Event in London as Cygnet’s PCREF Carer Lead, Carer Network Ambassador and carer author. The event brought together carers, healthcare professionals and sector leaders to celebrate carers and discuss the support they need. I shared my experiences as a lifelong carer and highlighted the importance of recognising carers as equal partners in care.

It was inspiring to hear from a diverse range of speakers, including experts by experience, researchers, advocates and service leaders, all united by a shared commitment to improving outcomes for carers. The event reinforced the importance of lived experience in shaping services and ensuring carers’ voices remain central to policy and practice.

13 June 2026 – Carers Community and Support Day at Wells Park Practice

I concluded Carers Week 2026 by hosting a carers information stall alongside Wendy (who is also a devoted carer campaigner at our Lewisham group) at Wells Park Practice during their Carers Community and Support Day.

The event celebrated carers within the local community and provided an opportunity for unpaid carers to access information, advice and support in a relaxed and welcoming environment.

Throughout the afternoon, I spoke with carers about the challenges they face and the services available to help them. The event also highlighted the importance of building a carer-friendly community by recognising carers, understanding the realities of caring and empowering carers to live fulfilling lives. It was a fitting way to end a busy and rewarding week dedicated to championing carers and raising awareness of their invaluable contribution to society.

Reflection

Carers Week 2026 was an incredibly busy and meaningful week, providing opportunities to raise awareness, influence decision-makers, support carers directly and celebrate the extraordinary contribution that unpaid carers make every day.

From hospitals and GP surgeries to Parliament, local authorities and national conferences, the message remained the same: carers are essential, carers deserve recognition and carers must be supported. I am proud to have contributed to so many events throughout the week and remain committed to ensuring that carers’ voices continue to be heard long after Carers Week has ended.

CarersWeek2026, #CarersWeek, #UnpaidCarers, #CarerAwareness, #SupportCarers, #CarersMatter, #NHS, #MentalHealth, #HealthAndSocialCare