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.
Co-producing our new forum poster
A significant part of the August meeting was devoted to reviewing a new promotional poster for the forum.
Rather than simply designing a poster and distributing it, we wanted members to see the draft first and help shape the final version. This became a useful co-production exercise in its own right.
Members were generally positive about the design and felt it was clear and welcoming. There was discussion about the wording “We are here for carers – Your voice matters”, and what the word “we” represents. The intention is that “we” means the forum collectively rather than any individual facilitator. The poster therefore needs to communicate that the forum belongs to its members.
Members also discussed the importance of showing what actually happens at the forum. This includes giving carers a stronger voice, influencing services, building connections, raising awareness, providing peer support and occasionally inviting relevant guest speakers.
There was a particularly useful suggestion to make “safe and confidential space” more prominent. Members felt that carers considering joining should know that they can talk about their experiences in an environment where confidentiality and respect are taken seriously.
The discussion also reinforced that guest speakers are useful, but they should support rather than dominate the forum. Speakers can help carers understand services and, importantly, give carers opportunities to raise common concerns directly with people who may be able to influence change.
Keeping the forum safe online
Another important discussion concerned how people access our Zoom meetings.
Members considered whether the Zoom link should simply appear on the poster. We decided against this. Previous experiences of open Zoom links have shown why online carer spaces need some protection.
Instead, the promotional material will direct people towards registration or contact information. This gives us a better idea of who is joining and helps maintain a safer environment for carers discussing potentially sensitive experiences.
The QR code was tested during the meeting and members were able to use it successfully to reach the registration information.
At the same time, an important accessibility point was raised: not every carer has a smartphone or feels comfortable using QR codes. For that reason, the poster includes conventional contact information so nobody is excluded simply because they are less confident with technology.
Making the forum easier to find
We also talked about getting the poster beyond our existing membership.
Members suggested continuing to circulate promotional material through local carer organisations and displaying posters in appropriate NHS and community settings. There was discussion about posters appearing on carer noticeboards and, where possible, reaching wards and other places where families may see them.
The intention is to have both a general poster containing the forum’s regular dates and updated promotional material for individual meetings.
This matters because there are unpaid carers across South West London who may have no idea that a peer forum such as ours exists.
Creating a stronger identity for the forum
One suggestion that came from members was to develop a more independent identity for the forum, including a dedicated email address.
Members felt this could make the forum easier to recognise and give carers a clearer point of contact instead of relying on individual personal accounts. There was also a feeling that having a dedicated identity would help the forum look more established while still remaining a voluntary, carer-led group.
Since the August meeting, I have acted on that suggestion.
The forum now has its own domain and dedicated contact address:
This is a small development, but I think it represents an important step in giving the forum an identity that belongs to the group.
Valuing carers’ time in research
Our meeting also led to a wider discussion about research involving unpaid carers.
I shared information about an Oxford University study exploring caregiver wellbeing and participation in social groups. The proposed survey takes around 40 minutes to complete.
This prompted some strong and thoughtful feedback.
Members were supportive of research that can improve understanding of unpaid caring, but questioned the repeated expectation that carers should contribute substantial amounts of their time without any recognition or reimbursement.
Carers already give enormous amounts of unpaid time. Members felt universities and research organisations should think more carefully about recognising lived-experience contributions, whether through vouchers, reimbursement or even a contribution to an appropriate charity.
This was not about carers being unwilling to help research. In fact, the opposite is often true. Carers repeatedly give their experiences because they hope things will improve for others.
The question raised by the forum was:
If lived experience is valuable enough to research, shouldn’t the time of the people providing that lived experience also be valued?
I agreed to feed this point back.
Moving forward together
What I particularly valued about August’s meeting was that something as straightforward as reviewing a poster developed into a much broader conversation about what kind of forum we want to be.
Members want a welcoming and confidential peer space. They want carers to have a stronger voice. They want relevant speakers and opportunities to influence services, but they also want the forum to remain somewhere carers can simply connect with people who understand the realities of caring.
As one part of the discussion emphasised, we are not a large organisation or charity. We are a group of people coming together to support one another and help ensure carers feel recognised and valued.
That is something worth protecting as the forum grows.
Our next forum
The South West London Mental Health Carers Forum will next meet online on:
Monday 28 September 2026 4:00 pm – 5:30 pm Online via Zoom
The September session will include a peer session and Recovery College discussion.
The forum covers carers across Kingston, Merton, Richmond, Sutton and Wandsworth.
For information about joining or future meetings, contact:
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.
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.
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.
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.
Some dedicated cancer carer groups have disappeared because funding ended, while others have struggled to reach carers. This does not mean the need has disappeared. Cancer caregivers are often supporting someone through appointments, treatment, recovery, recurrence or end-of-life care while also managing employment, children, household responsibilities and their own emotional wellbeing.
Unlike some longer-term caring roles, cancer caregiving can begin very suddenly. A diagnosis can quickly change someone’s relationships, responsibilities, finances and plans for the future.
Many people also do not identify with the word “carer”. They may say, “I am their husband,” “I am their wife,” or “I am their daughter.” Those relationships remain important, but recognising the additional caring role can open the door to information, carers’ assessments, local carer services and support from a GP practice.
My presentation on the cancer caregiving journey
I delivered a short presentation setting out a roadmap of what an unpaid cancer caregiver may experience. I emphasised that cancer affects more than the person receiving the diagnosis. It also affects the people providing transport, emotional reassurance, advocacy, medication support, practical care and coordination between different services.
Carers need clear information about what is happening, what warning signs to look out for, who to contact when something changes and what may happen next. Without this information, people can be left frightened that they might overlook something important.
Confidentiality must always be respected, but it should not become a blanket reason for excluding carers from every conversation. Professionals can still listen to information from a carer and provide general guidance about services, warning signs and sources of help. Information should also be given in plain language, because people under severe stress may not remember everything the first time it is explained.
The emotional impact of cancer caregiving can be hidden. Carers may feel they must remain strong for their loved one while privately experiencing fear, exhaustion, isolation or guilt. They may feel guilty about needing time away, becoming frustrated or thinking about their own wellbeing. Support should not automatically disappear when active treatment finishes, because uncertainty and the consequences of the caring experience may continue.
I also highlighted how culture, ethnicity, gender, sexuality, age, disability, income and digital exclusion can affect whether someone is recognised and supported. Male partners may be less likely to identify as carers, people from minority ethnic communities may experience barriers involving trust or culturally appropriate support, and LGBTQ+ partners may encounter assumptions about their relationships or family structures.
Good support asks rather than assumes.
University of Hertfordshire research
We then heard from Lara, a trainee clinical psychologist at the University of Hertfordshire. Her doctoral research is exploring the experiences of people whose partners have been affected by gynaecological cancer.
Lara explained that while there is research focused on people diagnosed with cancer, considerably less is known about how partners experience diagnosis, treatment and life afterwards. Her interest is also informed by her family’s experience of recurrent gynaecological cancer.
The research covers experiences connected with ovarian, cervical, womb or endometrial, vaginal and vulval cancers. It may explore changing responsibilities, fertility, intimacy, body image, emotional wellbeing and the accessibility of support. Participation is open to eligible partners from different backgrounds and relationships, including members of LGBTQ+ communities.
Participants would take part in an online interview lasting approximately 45 to 60 minutes. Information would be anonymised, and participants could withdraw if the conversation became too difficult. A £20 voucher is offered as thanks for taking part, or the participant can choose for £20 to be donated to a selected gynaecological cancer charity.
Lara hopes the findings will help services understand what partners actually need instead of making assumptions. Recruitment has been challenging, partly because this is a sensitive and often stigmatised subject, but that difficulty further demonstrates why the research matters.
Healthwatch Lewisham’s carers project
Hannah from Healthwatch Lewisham joined us to explain its role in championing the independent voices of local people using health and social care services. Healthwatch gathers patient and carer experiences, provides signposting and advocacy, and uses evidence to influence services, commissioners and decision-makers.
Healthwatch Lewisham is contributing to a wider carers project involving four Healthwatch organisations across London. A questionnaire is being developed to understand what is working for carers, where support is failing and what needs to change.
Hannah explained that the wording and tone of the questions are important. This cannot be treated simply as a data-collection exercise because the answers concern people’s lives, relationships and often painful experiences. Some people will be comfortable completing a questionnaire independently, while others may prefer to talk through their experiences.
The findings will be shared with organisations including GP practices, hospitals, NHS bodies and integrated care boards. The aim is to promote good practice while challenging areas where carers repeatedly report that support is missing.
Healthwatch Lewisham also offered to help publicise Lara’s research through its website, social media and links with other Healthwatch organisations. Possible connections with local services, including St Christopher’s, were discussed, along with the value of the Cancer Care Map for finding nearby cancer support.
Building the forum again
This meeting showed the importance of bringing lived experience, research and community organisations together. It also exposed a continuing gap: cancer caregivers are doing vital work, but many remain poorly identified, inadequately informed and unable to find others facing similar circumstances.
Hospitals, cancer alliances, GP practices, carer centres, charities and social prescribers all have a role in helping people recognise themselves as carers and find support before they reach crisis point. Services should routinely ask:
Who is providing support at home? What does that person need to know? How is caring affecting them? Have they been told where to find independent support? How will they be involved as circumstances change?
The National Cancer Caregiver Forum will continue to provide a space for these conversations. Attendance may take time to build, but the evidence from this meeting is clear: the need exists.
I would like to thank everyone who attended and contributed, particularly the carer who shared his personal experience. Lived experience is what gives this forum its purpose and helps researchers and organisations understand what caring for someone with cancer is really like.
The forum usually meets online on the last Wednesday of each month. I welcome unpaid cancer carers, former carers, researchers, cancer professionals and organisations that want to listen, contribute and help strengthen support.
The National Cancer Caregiver Forum is still a work in progress, but it is also a space I remain determined to develop.
On Monday 24 August, I facilitated another meeting of the South London Mental Health Carers Forum. The forum brings together unpaid carers and carer representatives from Lewisham, Lambeth, Southwark and Croydon, giving people a space to share experiences, learn about their rights and influence the development of local mental health services.
We welcomed carers with many different experiences, including parents supporting adult children with serious mental illness, autism and substance misuse, as well as people involved in advocacy, peer support, staff training and service development. Some members had been navigating the mental health system for many years, while others were newer to caring and looking for guidance.
A powerful message emerged from the introductions: even experienced carers can struggle to understand how different parts of the mental health system fit together. Services can feel fragmented, with carers passed between teams or excluded from discussions despite holding important information about their loved one’s history, warning signs and support needs.
Supporting the Supporters research
We were joined by Carol, an unpaid carer and postgraduate student studying psychology and neuroscience of mental health at King’s College London.
Carol introduced her research project, Supporting the Supporters: Professional Perspectives on Integrating Informal Care into the Mental Health Ecosystem. The study explores how professionals understand the contribution made by unpaid carers, how information and support could be improved, and how carers could be more meaningfully involved alongside mental health professionals.
As part of the research, Carol is interviewing people with professional or advocacy perspectives, including psychologists, psychiatrists, GPs, commissioners, teachers, service providers and carer advocates. I have already taken part in an interview, and several forum members expressed an interest in contributing.
The discussion highlighted why it is so important for carers’ experiences to be represented in academic research. Research can help shape future policy and practice, but carers also stressed that participants should be kept informed about what happens to the findings. Too often, people share deeply personal experiences with research projects and never hear about the outcome.
I also informed members about a separate University of Oxford study exploring wellbeing and social-group attendance among people caring for someone with a serious mental illness. We hope to hear more about this opportunity at a future meeting.
Triangle of Care: more than an accreditation badge
The main presentation focused on the Triangle of Care, a framework developed by Carers Trust to improve cooperation between the person receiving mental health services, the professionals supporting them and their unpaid carer.
As facilitator, I explained that the framework should be something carers experience in practice, not simply an accreditation badge displayed by an organisation.
South London and Maudsley NHS Foundation Trust has achieved Triangle of Care Star 1 for inpatient services and Star 2 for community services. With this work now being reviewed, there is an important opportunity for carers to help examine whether the standards are making a noticeable difference across local services.
Carers should be recognised and recorded, listened to when they provide relevant information, given clear explanations about confidentiality, offered appropriate information and support, and involved at important points in care and discharge planning. Staff should also understand that carers have needs and rights of their own.
Confidentiality should not become exclusion
Confidentiality produced one of the most detailed and passionate discussions of the meeting. Several carers described situations in which confidentiality had been used to shut down communication completely.
Respecting the service user’s privacy is essential, but confidentiality does not prevent professionals from listening to a carer’s concerns. A carer may hold vital information about changes in behaviour, medication, relapse indicators, risks or what the person is like when well.
Even when professionals cannot disclose personal clinical information, they can usually provide general information about how a service works, explain how a carer can submit concerns and signpost the carer towards available support. Carers should not simply be told, “We cannot speak to you,” and then left without guidance.
Members also discussed situations where a person experiencing a serious deterioration may withdraw consent for family involvement. These cases require careful professional judgement, particularly where there may be questions about safety, insight or decision-making ability. Carers felt that staff need more confidence and training to manage these situations without automatically treating the family as a problem.
Carers were encouraged to ask whether their role has been recorded, how they can share information with the clinical team, how they will be involved in care and discharge planning, and who they can approach if their perspective is being overlooked. Where serious concerns are ignored, carers should raise them in writing so there is a clear record.
Carer involvement in discharge
The discussion then moved to hospital discharge. Carers can sometimes be contacted shortly before someone returns home, without a proper conversation about whether they are able or prepared to provide the expected support.
A safer discharge should include an early discussion with the carer about the help they can realistically offer. Information about medication, warning signs, follow-up arrangements and points of contact should be explained clearly. Professionals should not assume that a family member can take on intensive caring responsibilities simply because they are related to the person.
Carers also need to know that they can request a carer’s assessment from their local authority. An assessment can help identify the effect caring is having on their own wellbeing and what support may be needed. Existing assessments should be reviewed when circumstances or caring responsibilities change.
What carers raised during the forum
A substantial part of the meeting was led by carers sharing what they had experienced while supporting relatives through mental health services. Although everyone’s circumstances were different, many common concerns emerged across Lewisham, Lambeth, Southwark and Croydon.
Several carers described the mental health system as fragmented and difficult to navigate. Families may deal with inpatient wards, community mental health teams, crisis services, supported accommodation, GPs and social care, but these services do not always appear to communicate effectively with one another. One carer reflected that even after years of involvement, it can still be difficult to know whom to contact when a new crisis develops. This raised concerns about how much harder the system must be for people who are new to caring.
Carers also felt that decisions made at senior levels do not always reflect what happens in practice. Policies, pathways and strategies may appear clear on paper, but families can experience delays, poor communication and a lack of coordination. Members wanted more people with direct experience of using or working within mental health services to influence decisions at the highest levels.
A major concern was the failure to listen when carers report early signs of deterioration. Carers often recognise changes in sleep, behaviour, medication use, substance misuse or communication long before a situation reaches crisis point. Some members described situations in which their warnings were overlooked, only for the person’s condition to worsen later. Carers felt that their observations should be recorded and considered as part of risk assessment and relapse prevention, even when professionals cannot share confidential clinical information in return.
Confidentiality was one of the most strongly debated issues. Carers understood that people using mental health services have a right to privacy. However, they felt that confidentiality is sometimes interpreted too rigidly and used to exclude families from almost every conversation.
The group stressed that professionals can still listen to information provided by a carer. They can also explain how the service operates, receive concerns, provide general guidance and direct the carer towards support. Saying “we cannot tell you anything” should not bring all communication to an end.
Some carers described being excluded after their relative had withdrawn consent for family involvement, sometimes during a period of serious illness or limited insight. Members questioned how consent is considered when someone’s mental state or decision-making ability may be changing. They felt staff should look carefully at the individual circumstances, risks and history instead of applying confidentiality as an automatic barrier.
The inconsistency between professionals was another concern. Some staff members communicate sensitively and recognise the value of family knowledge, while others refuse even to listen. Carers felt that the quality of their involvement should not depend on which professional happens to answer the telephone. Better training, management support and accountability are needed so that good carer practice becomes consistent across services.
There was also discussion about inaccurate or outdated information remaining in health records. Carers described how an early diagnosis, allegation or misunderstanding can continue to influence future treatment long after it has been challenged. Correcting such information can be extremely difficult, yet it may affect how professionals view both the person receiving care and their family. Members wanted clearer ways to challenge inaccuracies and ensure that corrections or alternative professional opinions are properly recorded.
Carers raised concerns about attitudes towards families. While relationships can sometimes be complicated, relatives should not automatically be viewed as interfering or obstructive. Where disagreements arise, members suggested that an independent person, advocate or senior professional could help everyone understand the different perspectives. Completely blocking communication can damage family relationships and may also undermine the person’s recovery and safety.
The experiences of carers from racialised communities were also recognised. One member spoke about the fear and mistrust that can develop when Black men repeatedly come into contact with mental health services or the criminal justice system. The forum acknowledged the importance of culturally responsive services that understand how race, stigma, previous experiences and unequal treatment can affect whether families feel safe seeking help.
Hospital discharge was another prominent concern. Some carers reported being contacted too late, with an expectation that they would immediately resume significant caring responsibilities. Members felt carers should be involved early enough to discuss what support they can realistically and safely provide. They should receive clear information about medication, warning signs, follow-up arrangements and who to contact if the person’s condition deteriorates.
Carers should not be treated as an unlimited resource. Being a parent, partner, sibling or other relative does not automatically mean someone is physically, emotionally or practically able to provide the level of support being assumed. The carer’s own health, employment, family responsibilities and wellbeing must be considered during care and discharge planning.
Members also discussed the importance of carer’s assessments. Some people had received very few assessments despite caring for many years. Carers were encouraged to request an assessment from their local authority and to seek a review when their responsibilities or personal circumstances change. An assessment creates a formal record of the caring situation and may identify support needed to protect the carer’s wellbeing.
Another recurring issue was accountability. Guidance about involving carers may exist, but families are not always sure what to do when services fail to follow it. Members were encouraged to put important concerns in writing, keep records of correspondence and ask for matters to be escalated when necessary. A clear written record can become particularly important if warnings have been ignored or a serious incident later occurs.
Despite these difficult experiences, the conversation also demonstrated the strength of peer support. Carers shared knowledge, validated one another’s concerns and helped newer members understand that they were not alone. The group strongly encouraged carers not to remain isolated, even when their loved one appears relatively well. Joining a carers’ centre, peer-support group or advocacy forum can provide information and connections before another crisis occurs.
The overall message from carers was clear: they are not asking to take over clinical decisions. They are asking to be recognised as people with valuable knowledge, their own support needs and an important role in safer care. The Triangle of Care will only have meaning if carers can see and feel these principles operating in their everyday contact with services.
Turning shared experience into influence
This meeting demonstrated why independent, carer-led forums remain so important. They reduce isolation, allow newer carers to learn from those with longer experience and help identify patterns that may otherwise be dismissed as individual incidents.
Members involved in SLaM meetings and the forthcoming carers’ listening event were encouraged to raise the Triangle of Care and ask how carers will contribute to its review. I will also seek to invite representatives leading this work at SLaM to a future forum so that they can update carers directly and respond to questions.
Our next South London Mental Health Carers Forum is due to take place on Monday 28 September 2026. We will continue examining the Triangle of Care, with a stronger focus on carers’ experiences and the practical changes they want to see across mental health services.
I would like to thank everyone who attended and spoke so openly. The experiences shared were sometimes difficult, but they reinforced an important principle: carers should not have to fight simply to be recognised, heard and supported.
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:
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.
My latest poetry video, “Gatekeeping Care,” explores the barriers minority ethnic unpaid carers can face when trying to navigate mental health services.
This is where unwritten rules, complicated medical language and unexplained carer rights can leave people struggling to understand how to obtain support.
Unpaid carers can also have their concerns not taken seriously.
The poem also reflects on what it feels like when decisions are made without carers and their cultural or religious beliefs are overlooked.
Through this poem, I want to raise awareness of why the Patient and Carer Race Equality Framework (PCREF) matters to carers and families.
I feel mental health services must listen to carers, communicate clearly and recognise them as equal partners rather than leaving them feeling judged, invisible or powerless.
I am pleased to share a research opportunity from Lara Pope, a Doctoral Clinical Psychology student at the University of Hertfordshire, who is looking to hear from partners of people who have experienced gynaecological cancer.
As someone who campaigns for greater recognition of unpaid carers and those supporting someone affected by cancer, I know that the experiences of partners can sometimes become overshadowed by the understandable focus on the person receiving treatment.
Yet partners can experience considerable emotional, practical and relationship changes of their own.
About the research
“Exploring partners’ experience of gynaecological cancer: An Interpretive Phenomenological Analysis.”
The research aims to better understand what it is like to be the partner of someone who has experienced gynaecological cancer, including how partners navigate their own needs, relationships, identity and intimacy.
Lara is particularly keen for the research to reach people whose voices can sometimes be less visible in research, including male partners, people from Global Majority communities and LGBTQ+ communities.
Who can take part?
You may be eligible if you:
Are aged 18 or over
Live in the UK
Speak English
Are the partner of someone diagnosed with gynaecological cancer at least 12 months ago
There are some additional eligibility considerations which Lara can discuss with anyone interested in participating.
What does taking part involve?
Participants will take part in an online semi-structured interview, providing an opportunity to talk about their experiences and perspectives as a partner.
The interview will last approximately 45–90 minutes.
Participants can choose either a £20 Love2Shop voucher or have £20 donated to one of three selected cancer charities in recognition of their participation.
The importance of the research
Cancer does not only affect the person receiving the diagnosis.
Partners may find themselves providing emotional support, attending appointments, managing additional responsibilities and trying to support the person they love while also dealing with their own fears and emotions.
Research that listens directly to partners can help improve understanding of these experiences and potentially inform recommendations for services, professionals and organisations supporting families affected by cancer.
Interested in taking part?
Please see the research recruitment poster accompanying this article, including the QR code for further information.
You can also contact the researcher directly:
Lara Pope Doctoral Clinical Psychology Student University of Hertfordshire Email: lp24abe@herts.ac.uk
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.
By Matthew McKenzie – Member of Southwark Carers Strategy Working Group
Southwark Council is inviting unpaid carers from Southwark to share their experiences and help shape its review of adult safeguarding services.
The council’s Health, Adult Social Care and Community Safety Scrutiny Commission is examining how safeguarding services can better support adults and their carers while promoting independence, dignity, choice and wellbeing.
The Commission would particularly like to hear carers’ experiences of:
Working with safeguarding and other professionals
Accessing information and support
Being included in safeguarding decisions
Preventing abuse, neglect and other forms of harm
Balancing personal safety with independence and choice
Self-neglect and hoarding
The use of technology
Communication with carers
Supporting someone living with dementia or mental ill health
Caring for an adult child or sibling with a disability
Your experiences could help the Commission identify what is working well, where improvements are needed and how carers can be more effectively recognised and involved.
Complete the carers’ survey
Unpaid carers can share their experiences through Southwark Council’s online Adult Safeguarding Review Carers’ Survey:
The survey is anonymous and will remain open until Friday 11 September 2026.
Join the online carers’ workshop
Southwark Council is also holding an online workshop where carers can discuss their experiences in greater detail.
Join the online carers’ workshop
Southwark Council is also holding an online workshop where carers can discuss their experiences in greater detail.
Date: Thursday 20 August 2026 Time: 12:30 pm Location: Online via Microsoft Teams
To request the Microsoft Teams joining details, please contact Julie Timbrell, Scrutiny Project Manager, at:
Please include “Adult Safeguarding Carers’ Workshop” in the subject line.
For safeguarding and meeting security, the direct Teams link and passcode are not being published on this website.
If you cannot attend the workshop, you can still contribute to the review by completing the anonymous survey.
Confidentiality and use of information
Taking part in the survey or workshop is voluntary.
Notes will be taken during the workshop, but participants’ comments will be anonymised before they are included in reports or presented to councillors. Individual participants will not be identified without their explicit consent.
Survey responses will also be analysed and reported anonymously. Southwark Council is interested in identifying common themes and experiences rather than identifying individual carers.
The information collected will only be used to inform the Adult Safeguarding Review and its recommendations. A report containing the Commission’s findings and recommendations will be published after the review has been completed.
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. The afternoon was designed around inclusion, psychological safety and optional participation, allowing people to contribute in whatever way felt comfortable to them.
As someone who has cared for family members affected by severe mental illness for many years, I continue to believe that poetry allows carers to communicate emotions that ordinary conversations often fail to capture. Statistics tell us what is happening, but poetry often explains how it feels. This aligns closely with PCREF’s ambition to humanise care, improve understanding of racial inequalities and ensure lived experience genuinely influences service development.
The event opened with readings from my forthcoming collection of PCREF poems, including “Change is Possible.” Rather than focusing solely on racism, the discussion explored hope, community, partnership, co-production and carers becoming recognised as equal partners within mental health care. Participants reflected that although change often feels slow, meaningful progress can still occur when carers are given opportunities to influence services.
One participant commented that the poem should never have needed to exist because carers should already be recognised and listened to. Another reflected that the line “those doors open slowly” accurately described the experience of advocating for loved ones over many years. These discussions reminded everyone that poetry can stimulate conversations which may never emerge during formal meetings or consultations.
One of the highlights of the afternoon was a collaborative workshop led by Jo Lambert, introducing participants to the Hold the Hope project through art, colour and reflection.
Rather than asking carers to simply colour a picture, participants were encouraged to think about what hope, equality, dignity and belonging meant to them personally. They selected PCREF-related words, explored why particular colours reflected their emotions and discussed how creativity can communicate experiences beyond spoken language.
The discussion demonstrated that every participant interpreted the same image differently.
Some chose calming blues to represent peace and trust.
Others used brighter colours to symbolise recovery, resilience and optimism.
Several carers explained that colouring became a form of mindfulness, allowing them to process difficult emotions whilst talking with others.
The activity also highlighted something particularly important from a lived experience perspective. Mental health carers frequently spend years speaking on behalf of others. Opportunities to express their own feelings are much rarer. Through art and poetry, carers were able to focus on themselves without feeling they had to justify or defend their experiences.
This reinforced one of the strongest messages of the day:
Creative expression is not simply an enjoyable activity, it is another form of lived experience evidence.
Participants also appreciated that there were no “right” or “wrong” answers. Every artwork reflected an individual caring journey, demonstrating the diversity that exists within the unpaid carer community.
The power of shared lived experience
Perhaps the most valuable aspect of the event was the conversation that developed naturally between carers.
Discussions moved beyond poetry into themes including:
feeling excluded because of confidentiality
racial inequality within services
the emotional burden of long-term caring
recognition of carers as equal partners
loss of identity through caring
maintaining hope during crisis
the importance of community support
Many participants reflected that carers often possess significant practical knowledge but are still not viewed as equal partners within clinical decision making.
One participant explained that carers are frequently expected to educate professionals whilst simultaneously managing the emotional impact of supporting someone in crisis. Others spoke about the exhaustion of constantly advocating for loved ones whilst trying to maintain their own wellbeing.
These conversations demonstrated exactly why creative events have an important place within PCREF. Rather than collecting another questionnaire, participants were able to describe experiences in their own words, using poetry, storytelling and discussion.
Importantly, professionals attending the session also listened.
This helped create genuine dialogue rather than the traditional model where professionals ask questions and carers provide short answers.
The atmosphere remained respectful throughout, allowing difficult topics including racism, discrimination and feeling unheard to be explored constructively.
For many attendees, simply meeting other carers who understood their experiences reduced feelings of isolation.
Celebrating culture and creativity
The second half of the afternoon celebrated cultural diversity through music, spoken word and performance.
Faith shared “Soothing Blue,” a poem that had been transformed into music. Hearing lived experience expressed through song demonstrated another creative way carers can communicate emotions that may otherwise remain hidden. Participants reflected on themes of healing, identity and rediscovering themselves beyond their caring role.
Brenda then performed traditional Jamaican folk songs, including “Chi-Chi Bud Oh” and “By the Rivers of Babylon.” These performances reminded everyone that culture forms an important part of identity and wellbeing. Cultural expression can strengthen belonging and create opportunities for people from different backgrounds to learn from one another.
The PCREF word search and poetry activity further encouraged participants to explore words such as community, dignity, inclusion, hope, equality and compassion before creating short poems of their own. What initially appeared to be a simple puzzle became another opportunity for reflection and discussion.
Throughout the afternoon there was laughter, encouragement and mutual support. Participants applauded one another’s contributions regardless of previous poetry experience, reinforcing that everyone had something valuable to contribute.
By combining poetry, visual art, music and conversation, the event demonstrated that creativity can become a powerful vehicle for engagement with carers who may not usually participate in traditional consultation events.
Reflections and looking ahead
Looking back as both a lived experience carer and PCREF Carer Lead, I believe this event demonstrated several important lessons.
Firstly, carers do not simply want to be consulted, they want to be heard.
Secondly, creative approaches allow conversations to emerge that formal meetings often miss.
Thirdly, culture matters. When people feel safe enough to bring their whole identity into a room, discussions become richer, more authentic and more meaningful.
The Voices & Verses programme is gradually becoming more than a poetry group. It is developing into a community where carers can connect, learn from one another and influence future mental health services through creativity.
Future events will continue to develop this approach by:
expanding hybrid participation so more carers can join remotely;
increasing opportunities for cultural storytelling;
creating more collaborative art and poetry projects;
transforming poems into music and other creative media;
strengthening links between PCREF, Triangle of Care and co-production.
Most importantly, the event reminded us that lived experience should never be viewed as an optional extra.
Every poem, every conversation and every shared story represented expertise developed through years of caring.
PCREF asks organisations to listen more carefully to diverse communities.
This event showed that when carers are given the right environment, they do not simply speak—they inspire, educate and help shape better mental health services for everyone.
A Caring Mind 