Tag Archives: carer wellbeing

Greenwich Mental Health Carers Forum – September 2026 Update

By Matthew McKenzie – Chair of the Greenwich Mental Health Carers Forum

Welcome to the September update of the Greenwich Mental Health Carers Forum, held on Tuesday 29 September 2026.

This month, we welcomed representatives from Greenwich Carers Centre, the Royal Borough of Greenwich, Healthwatch Greenwich and Greenwich Mental Health Hub, alongside unpaid carers.

Our discussion explored the future of carer support in Greenwich, difficulties accessing respite, support available through the Mental Health Hub, and how carers’ feedback can influence services.

For those unable to attend, here is an overview of the meeting.

Greenwich Carers Centre: opportunities to connect and receive support

Catherine Hope joined us on behalf of Greenwich Carers Centre to share its forthcoming activities.

The programme included employment and digital support, the Mindcare Memory Café, a men’s carers group, karaoke, bereavement support, and information sessions about wills and disabled persons’ trusts. A community health event was also highlighted for late October.

Alongside these events, the Centre continues to offer regular activities such as dance, art, Tai Chi, knitting and social gatherings.

These opportunities matter because caring can leave little time for friendship, enjoyment or attention to our own wellbeing. A welcoming place to meet others can make a considerable difference.

Carers interested in attending should contact Greenwich Carers Centre for the latest programme, booking arrangements and eligibility information.

Shaping the future of carer support in Greenwich

Caleb and Evie from the Royal Borough of Greenwich commissioning team updated us on work to review commissioned carer services and prepare for the next stage of the borough’s carers strategy.

The current strategy comes to an end in 2027. Commissioners have been gathering feedback through workshops, carers groups and community engagement, including sessions focused on mental health carers and culturally inclusive support.

They explained that this feedback is helping shape the requirements for future carer services. It will also inform thinking about a future strategy or charter, although the final approach has not yet been decided.

The intention is to develop proposals and return to carers groups, potentially early next year, to check whether those proposals reflect what carers have said.

I welcome that commitment to return. Carers need opportunities to see how their experiences have influenced decisions and to challenge proposals where something important has been missed.

Respite: carers need breaks that work in everyday life

Respite was one of the strongest themes raised during the meeting and across the council’s wider engagement.

Commissioners reported concerns about access, suitability, affordability and the complexity of finding the right support.

Our discussion showed why respite needs to fit the realities of caring. Some carers need a longer break, while others need smaller, regular periods of rest within their weekly routine.

One carer described difficulties obtaining support when the person they care for lives in accommodation in another borough. Their caring responsibilities continue despite living at different addresses.

This raised an important issue: services need to understand the care someone actually provides, including practical support, emotional support and ongoing responsibility across borough boundaries.

Commissioners also described an apparent mismatch between carers reporting a strong need for breaks and some commissioned respite beds remaining unused. They are exploring why this is happening and where access arrangements may be failing.

For me, this is a clear example of why listening to carers matters. The existence of a service does not tell us whether people can use it or whether it meets their needs.

How does feedback reach people who can change services?

I asked how concerns about difficult-to-access or unsuitable services reach those responsible for making improvements.

The commissioning team explained that they have brought together feedback on respite into a report and are sharing it with colleagues responsible for different services, including learning disability, mental health and care home provision.

Other concerns, including carers’ assessments, direct payments and support for parent carers, require work across several teams.

They acknowledged that the timescale for change varies. Some improvements may be possible through changes to contracts, while others require longer-term planning.

The team also expressed an interest in publishing an account of what they have heard and what they intend to do.

That would be a useful step towards accountability. Carers should be able to follow the connection between the experiences they share, the decisions made and the improvements delivered.

Earlier identification and culturally inclusive support

Commissioners highlighted several recurring themes from their engagement:

  • Inconsistent information and advice across services.
  • Missed opportunities to identify carers earlier.
  • Difficulty navigating health and social care.
  • A need for more proactive support.
  • The importance of trust and relationships.
  • Barriers involving access to interpreters.

The discussion about interpreting was particularly important. Carers should be able to explain their situation, understand information and take part in decisions in a language they can use confidently.

The council’s culturally inclusive engagement has also explored systemic barriers and anti-racist approaches to commissioning.

There was positive feedback too. Commissioners reported that carers place a high value on peer support, with Greenwich Carers Centre described by some as a lifeline.

Greenwich Mental Health Hub: understanding the support available

Jackie, representing Greenwich Mental Health Hub, gave a detailed presentation about its integrated approach.

The Hub brings together Oxleas clinical services and voluntary sector partners, including South East London Mind and Bridge Support. Its aim is to offer personalised support that considers someone’s psychological, physical and social circumstances.

The presentation described support involving:

  • Mental health assessment and brief interventions.
  • Medication advice and support.
  • Peer support and group programmes.
  • Housing, benefits and employment advice.
  • Social prescribing and community connections.
  • Support with co-occurring mental health and alcohol difficulties.
  • A dedicated carers advisor.

Jackie explained that much of the Hub’s work involves short-term support, generally around 12 weeks, with onward referral where further help is needed.

She also reported more than 7,000 referrals over the preceding year, illustrating the scale of demand.

Referral routes and carers’ concerns about deterioration

I asked what happens when a carer notices that the person they support is becoming more unwell, and how that information reaches the appropriate team.

In the discussion, Jackie described the GP referral route into the Hub. She explained that carers seeking their own support would also generally need a GP referral unless they were already receiving support through an active Hub referral.

The Hub was described as an appointment-based service rather than a walk-in service.

Jackie explained that referrals are screened regularly and urgent referrals prioritised. Screening is an initial review of the referral; it should not be confused with a confirmed appointment or treatment starting immediately.

These questions remain important for carers. When someone’s health is deteriorating, families need clear information about who to contact, how concerns are considered and what happens next.

Carers’ assessments and waiting for support

A carer raised concerns about waiting for a carers’ assessment without being given a clear timescale.

The discussion clarified that a local authority carers’ assessment and a mental health assessment through the Hub serve different purposes. One looks at the caring role and its impact; the other considers mental health support needs.

The carer was encouraged to ask the council for an expected timescale. An offer was also made to seek information about average waiting times and follow up.

The forum did not establish a confirmed waiting period. However, the discussion highlighted how uncertainty itself adds pressure when someone is already struggling.

Community organisations and mental health inequalities

Jackie also described the Hub’s grants programme supporting community organisations to provide mental health support.

She reported that ten community groups had received funding over the past year. The approach recognises that trusted local organisations can help people access support, particularly where stigma or other barriers make conventional services difficult to approach.

Further information about the grants was requested during the meeting.

Healthwatch Greenwich: another route for sharing experiences

Katie from Healthwatch Greenwich explained how residents can share experiences of health and social care, including through conversations and anonymous online feedback.

She described how information is anonymised when reported to commissioners, helping services understand what is working and where improvements are needed.

For carers who would prefer to speak privately rather than share an experience in a group, this offers another route to contribute.

Looking ahead

Thank you to all the carers and professionals who joined the September forum.

The meeting showed both the value of existing support and the difficulties carers still face. Respite, clear referral routes, timely assessments, consistent information and earlier recognition of caring responsibilities all need continued attention.

Our next Greenwich Mental Health Carers Forum is planned for November. I look forward to continuing these discussions and hearing how the feedback shared by carers is being taken forward.

You can also read the June forum update here.

Carers’ experiences need to remain central to the future of support in Greenwich.

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:

  1. Have you recorded me as the person providing support?
  2. What do I need to know to support care safely at home?
  3. Who should I contact if something changes?
  4. What information can be shared with me, with the patient’s consent?
  5. 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.

When a Picture Speaks: Ealing Carers Art and Poetry, September 2026

By Matthew McKenzie – Ealing Carers Poetry Group facilitator

At our September Ealing Carers Poetry Group, we tried something different: bringing drawing and poetry together. I invited carers to sketch something simple, notice the words and feelings it brought to mind, and then write as though the picture could speak.

There was no expectation to be an artist or an experienced poet. A few lines on paper were enough. What mattered was giving carers room to express something important to them.

Draw a moment, write its voice

The drawings included a cup of tea, a bed, a slice of watermelon, a circle, a birthday card, two hands holding one another and a smiling sun. Each became a starting point for a different poem.

A cup of tea brought out the closeness between a carer and her son, and the hope found in sitting together. A drawing of a bed led to a poem about watching someone you care for and wishing you could do more. The green, black and red of a watermelon became a way to describe the daily cycle of caring and the return of brighter moments.

Other poems explored bonds that continue through difficult times, memories held in an old birthday card, the reassurance of holding hands, and the need for carers to find moments of joy and self compassion.

Some drawings were emailed to me; others were held up to the webcam. Even when a picture was difficult to see on screen, the person who made it could tell us what it meant. Hearing each poem in the carer’s own voice added something the image alone could not convey.

The objects we keep close

For a second exercise, I asked carers to choose an everyday object and begin with the idea, “You might think this is just…” A cardigan became a source of comfort. A pen represented both creativity and the practical work of caring. A book of poems, a blanket and an iPad used to play music opened up thoughts about memory, connection and changing emotions.

I was struck by how generously everyone listened. Carers noticed details in one another’s work and offered encouragement. One person found it difficult to write during the exercise, and that was welcome too. Being part of the group does not depend on producing a poem every time.

Watch the carers’ poems and artwork

I have brought the drawings and poems together in a short video so that more people can see what the group created:

Thank you to everyone who drew, wrote, read aloud, listened and supported someone else. The session reminded me that a simple picture can hold a great deal of experience, and that carers deserve space for their own creativity as well as their caring role.

Join us

The Ealing Carers Poetry Group is a welcoming online space for unpaid carers, including mental health carers. You can write, share, or simply come along and listen. Carers from Ealing and beyond are welcome to enquire.

To ask about the next online session, email info@ealingcarerspartnership.org or call 0203 475 9891.

I will also be leading a free in person poetry workshop on Thursday 8 October 2026, 11 am–1 pm, at Ealing Central Library. Places are limited, so please contact Ealing Carers Partnership to register.

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

South West London Mental Health Carers Forum – August 2026 Update

By Matthew McKenzie, Co-Facilitator – South West London Mental Health Carers Forum

The South West London Mental Health Carers Forum met again during August 2026, bringing together unpaid carers to share experiences, discuss how the forum is developing and look at ways we can strengthen the voice of carers across South West London.

The forum continues to be a peer-led space shaped by carers themselves. An important message from the August meeting was that this is a group for carers, run with carers and influenced by carers. Members spoke about wanting people who join the forum to feel recognised, valued and able to support one another, rather than the group becoming overly formal or service-led.

Continue reading →

The Heart of Care – Ealing Carers Online Poetry Group August 2026

By Matthew McKenzie – Poetry group facilitator

The Ealing Carers Online Poetry Group returned in August for another warm and creative evening of poetry, reflection and peer support. Delivered with the support of Ealing Carers Partnership, the group has now been running for two years and continues to provide carers with a welcoming space in which they can express themselves, meet others and take some valuable time away from the pressures of their caring roles.

Carers joined the session for different reasons. Some wanted inspiration to write, while others valued the opportunity to relax, listen and spend time with people who understood the realities of caring. One member described how they often begin an exercise believing they will not be able to write anything, only to be surprised by the words and emotions that emerge.

This is an important part of the poetry group. Nobody needs to be an experienced poet, and there is no pressure to read aloud. People are welcome to participate at their own pace, listen to other carers and gradually build their confidence.

Exploring “The Heart of Care”

The main writing exercise was called “The Heart of Care”. Carers were given the beginnings of lines and invited to complete them using words drawn from their own experiences. They could choose whether or not to use rhyme.

The poems explored dedication, courage, memories, exhaustion, prayer, quiet reflection and the determination required to continue caring through difficult days. Familiar moments, including sharing a laugh, shedding a tear or simply making a cup of tea, became meaningful images within the poems.

Although everyone worked from the same starting point, each poem developed its own character and voice. One contribution focused on the strength needed to continue walking along the “winding road” of caring. Another described finding a voice and taking a stance, while another ended by recognising that small moments of reflection can help build the core of a carer’s wellbeing.

The exercise reminded us that poetry does not need to be complicated. A few carefully chosen words can express feelings that may otherwise be difficult to explain.

Listening, reflecting and encouraging one another

After each poem was shared, group members were encouraged to ask thoughtful questions and reflect on what they had heard. This created some powerful conversations about finding your voice, managing negative thoughts and recognising your own efforts.

One carer spoke about replacing late-night self-criticism with positive affirmations: reminding themselves that they had done their best and did not need to solve everything before allowing themselves to rest.

Another spoke about the “will” carers must find each morning to get up and continue. Even though they felt nervous about reading aloud, the encouragement they received demonstrated the peer-support element at the heart of the group.

Carers were encouraged to keep their poems together in a folder or notebook. Returning to words about hope, warmth, identity and resilience can offer reassurance during times when someone is feeling low or overwhelmed.

When a carer’s poem becomes a song

A particularly moving part of the evening came when one member shared a song developed from their own poem about caring. The piece was originally inspired by the theme “A Carer Is” and offered a heartfelt message to other carers: you are seen, you matter and the contribution you make deserves to be recognised.

Members described the song as a love letter to carers. They felt it was something from which carers could draw comfort and strength, particularly because recognition does not always come from services or even from the people receiving care.

The writer generously gave permission for the song to be shared with other carer groups, forums and events.

Listen to the carer’s song here:
https://www.mureka.ai/song-detail/125940401242114

Carers helping to shape future poetry events

The session was also an opportunity to ask carers what they would like to experience at upcoming in-person and hybrid poetry events.

Ideas included combining poetry with art, drawing and music; creative activities based on hope, wellbeing and resilience; choosing unexpected words from a hat and using them to write a poem or short story; and using simple unfinished lines to help people try poetry for the first time.

Members also suggested introducing relaxation, breathing and gentle body-awareness activities. These could help carers settle their minds, release some tension and feel ready to write.

Most importantly, carers wanted opportunities to perform their own work and help lead parts of future workshops. One member volunteered to lead a creative word-picking exercise at a future event. This is an exciting step towards making the programme increasingly carer-led and co-produced.

Upcoming activities discussed during the session included an Ealing Central Library workshop on 8 October, a future workshop at Greenford Library and an event at Manor House Library in Lewisham on 4 November. Further details will be shared once all arrangements have been confirmed.

Join the Ealing Carers Online Poetry Group

The Ealing Carers Online Poetry Group is more than a writing workshop. It is a friendly and supportive community where carers can connect, develop their creativity and have their experiences heard and valued.

You do not need to consider yourself a poet. You can write in rhyme or free verse, share something you have already created or simply attend and listen. Carers from Ealing and beyond are welcome to take part.

The next online meeting is planned for Friday 25 September 2026. Please contact the group organiser for the joining details and to be added to the mailing list.

info@ealingcarerspartnership.org

Whether you are looking for creative inspiration, companionship, a little relaxation or a safe way to express your caring experiences, you will be warmly welcomed.

National Cancer Caregiver Forum – August 2026 update

By Matthew McKenzie – Facilitator of Cancer Caregiver group

It has been a long while since I published a full update from my National Cancer Caregiver Forum. Although I have continued working to raise awareness of unpaid cancer caregiving, this latest meeting reminded me why the forum remains so necessary.

The National Cancer Caregiver Forum provides an online space for people caring for someone affected by cancer, former carers, researchers and organisations interested in improving support. It combines peer support with engagement, research and opportunities to influence cancer services.

Why cancer caregivers still need a voice

I opened the forum by reflecting on the shortage of dedicated groups for unpaid cancer carers. There are many services and support groups for people receiving cancer treatment, as there should be, but far fewer spaces focused specifically on the partners, relatives and friends supporting them.

Continue reading →

Oxford University study seeks unpaid carers supporting someone with severe mental illness

By Matthew McKenzie – facilitator of carer groups

Dr Eiluned Pearce, a trainee clinical psychologist and researcher at the University of Oxford, is seeking help recruiting participants for an important study about unpaid carers’ wellbeing.

The study will explore whether attending social and community groups, including carer support groups, clubs and other group activities is associated with improved wellbeing among people supporting someone with a severe mental illness.

This is particularly relevant to what I promote at my site because many unpaid carers rely on peer groups and carer forums for understanding, information and a sense of connection. However, you do not need to attend any kind of group to participate. The researchers need to hear from carers who attend groups and those who do not.

Who can take part?

You may be eligible if you:

  • Are aged 18 or over
  • Live in the United Kingdom
  • Speak English fluently
  • Provide unpaid emotional or practical support to someone aged 16 or over
  • Support someone experiencing psychosis, bipolar disorder, an eating disorder, or complex emotional needs/personality disorder
  • Do not personally experience a severe mental illness

You do not have to describe yourself as a “carer” or “caregiver”. You might consider yourself a relative, partner, parent, sibling or friend who provides essential support.

What does participation involve?

Participants will complete an anonymous online survey lasting approximately 40 minutes. You can take breaks and return to it using the same internet browser, provided it is completed within one week of starting.

Questions will cover your wellbeing and mental health, the support you provide, its impact on you, any groups you attend and some information about your background.

Individual responses will not be shared outside the research team, and IP addresses will not be recorded.

Take part in the study

To read more about the research and access the survey, visit:

https://tinyurl.com/CaregiverSMIWellbeingOrgs

The study has been approved by the University of Oxford Central University Research Ethics Committee (reference: MS IDREC 2204969).

For questions about the research, please contact:

Dr Eiluned Pearce
Email: eiluned.pearce@psy.ox.ac.uk
Telephone: 07775 229377

Dr Lorna Hogg
Email: lorna.hogg@hmc.ox.ac.uk

Dr Shama El-Salahi
Email: Shama.ElSalahi@oxfordhealth.nhs.uk

Research into carers’ wellbeing remains limited, and it is important that the experiences of people supporting someone with a severe mental illness are properly heard and understood.

2nd Voices & Verses – PCREF Poetry Event

By Matthew McKenzie – Cygnet PCREF Carer Lead & Carer Ambassador

Cygnet PCREF Carer Lead & Carer Ambassador

On 4 August 2026, unpaid carers, professionals and people with lived experience came together at Cygnet Churchill for the second Voices & Verses Carers Poetry Event. The purpose of the afternoon was not simply to read poetry, but to create a safe space where carers could express experiences that are often overlooked within mental health services.

The event formed part of Cygnet’s ongoing commitment to the Patient and Carer Race Equality Framework (PCREF) by exploring how creativity, culture and storytelling can strengthen co-production and improve relationships between carers and services.

Continue reading →

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.