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.
By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum
The July meeting welcomed unpaid carers, NHS organisations, universities, researchers and community groups from across England to discuss how mental health services can become more inclusive for carers from ethnic communities.
Matthew McKenzie opened the meeting by reflecting on over thirteen years of facilitating the forum and explained how its purpose has grown alongside national initiatives such as the Patient and Carer Race Equality Framework (PCREF) and the Triangle of Care. The forum continues to provide a national platform where carers can influence NHS services, hear about new research and share experiences with professionals and decision-makers.
Matthew introduced the day’s programme, which included research presentations, NHS England engagement, updates from mental health trusts and national organisations, and opportunities for carers to influence future policy
Dr Ida Doherty – King’s College London
Supporting Ethnic Carers in South West London
Dr Ida Doherty presented her doctoral research exploring how adult mental health services support ethnic minority families where a parent experiences mental illness.
She explained that despite national policy promoting a Think Family approach, implementation across England remains inconsistent. Many parents receiving mental health support are never asked about their children, meaning opportunities for preventative family support are often missed.
Discussion Highlights
This presentation generated one of the longest discussions of the meeting.
Carers highlighted:
Adult and children’s services continue to work separately.
Families often have to repeat their stories to multiple organisations.
Parents fear seeking support because of concerns about children being removed.
Structural racism continues to affect safeguarding and mental health services.
Disabled parents and carers experience multiple layers of discrimination.
Services often respond only during crisis rather than providing early intervention.
There was also an important discussion about safeguarding carers who participate in research. Participants stressed that research should include emotional support, culturally appropriate safeguarding and co-produced approaches to prevent re-traumatisation. Dr Doherty welcomed these suggestions and explained the safeguarding measures built into her study.
Dr Doherty encouraged forum members to promote the study across South West London to help ensure ethnic families are represented within the research.
Certainly. Here’s a more professional version that focuses on the discussion rather than identifying who asked each question.
Questions and Discussion
Q1. How can mental health services better implement the “Think Family” approach?
A question was raised about the continuing separation between children’s and adult mental health services, with concern that families are often required to navigate multiple systems that fail to communicate with one another. It was suggested that supporting one family member in isolation overlooks the wider impact of mental illness on the entire household.
Response
Dr Doherty agreed that this is a significant challenge and explained that her research is centred on improving whole-family support. She highlighted that current services often operate in silos, limiting opportunities for early intervention and joined-up care. The aim of her research is to identify practical ways of embedding the Think Family approach more effectively within adult mental health services.
Q2. How will the research address the inequalities experienced by ethnic minority families?
A discussion focused on the additional challenges faced by ethnic minority families, particularly where disability, poverty, language barriers and mental health intersect. Concerns were raised about institutional racism, unequal treatment and the fear some parents experience when engaging with services.
Response
Dr Doherty acknowledged that these intersecting inequalities can significantly affect families’ experiences. She recognised that services can often adopt a risk-focused rather than strengths-based approach and explained that her research seeks to identify earlier, more supportive interventions that better meet the needs of ethnic minority families.
Q3. How will carers participating in the research be protected from emotional harm?
The discussion explored the importance of safeguarding participants involved in research. It was suggested that sharing lived experiences can be emotionally challenging and that researchers should have appropriate support mechanisms in place before, during and after participation.
Response
Dr Doherty explained that safeguarding had been a key consideration throughout the development of the study. She described how support, supervision, training and ongoing review have been built into the project, alongside close collaboration with Experts by Experience from the earliest stages of the research.
Q4. Will participants receive ongoing emotional support after difficult discussions?
A further question explored whether structured debriefing and emotional support would be available for participants who may experience distress after discussing traumatic experiences.
Response
Dr Doherty confirmed that the study includes a comprehensive safeguarding framework, including debrief sessions and wellbeing support. She explained that the project had undergone rigorous NHS ethics approval and that participant welfare continues to be reviewed throughout the research process.
Q5. How is co-production embedded within the research?
The final discussion focused on ensuring that the research is genuinely co-produced with ethnic communities rather than being designed solely from a professional perspective. There was also support for developing safeguarding approaches jointly with carers.
Response
Dr Doherty explained that co-production is fundamental to the project. She has worked alongside Experts by Experience since the study was first developed and described the research as something being undertaken in partnership with people who have lived experience. She also welcomed suggestions for strengthening carer-led safeguarding approaches as the project progresses.
Dr Maeve (King’s College London)
Research Study: The Nearest Relative under the Mental Health Act
Dr Maeve introduced a new King’s College London research project examining experiences of the Nearest Relative provisions within the Mental Health Act. She explained that the study aims to understand how the current legislation works in practice and gather views ahead of the proposed reforms to mental health law. The researchers are interested in hearing directly from people who have lived experience of the system, recognising that the Nearest Relative can play a crucial role in supporting someone during assessment, detention and treatment.
The study is seeking participants from a range of backgrounds, particularly unpaid carers who have supported someone detained or assessed under the Mental Health Act, as well as individuals who have themselves experienced detention or assessment. The research team is especially keen to hear from Black and other ethnic minority communities, along with younger people, to ensure that a wide range of perspectives help inform future policy and practice. Interviews are conducted online via Microsoft Teams at a convenient time for participants, last approximately one hour, and participants receive a £30 shopping voucher as a thank-you for contributing their experiences. Dr Maeve encouraged anyone interested to contact the research team or share the opportunity with others who may wish to participate.
Ruby Neish – University College London
Cancer Care and Black Women
Research Study: Supporting Carers of Women with Endometrial (Womb) Cancer
Ruby Neish, a Master’s researcher from University College London working in collaboration with the Centre for Early Detection, introduced a research project exploring the experiences of family members, friends and unpaid carers supporting women diagnosed with endometrial (womb) cancer. She explained that while much research focuses on the experiences of patients themselves, comparatively little is known about the challenges faced by those providing informal care throughout diagnosis, treatment and recovery. The study aims to build a more complete picture by understanding how carers experience the cancer pathway, the support they receive and the barriers they encounter. Ruby emphasised that carers often play a vital role in navigating appointments, providing emotional support, helping with treatment decisions and managing the practical realities of living with cancer, yet their experiences are frequently overlooked in research.
Following the presentation, forum members shared a wealth of lived experience highlighting why this research is particularly important for Black and minority ethnic communities. The discussion explored how delayed diagnosis, language barriers, cultural expectations, disability, poor communication and wider health inequalities can all contribute to poorer experiences for both patients and their families. Members also reflected on the importance of improving awareness of cancer symptoms within communities, encouraging uptake of screening programmes and ensuring services are culturally responsive. Several contributors stressed that carers often become advocates, interpreters and navigators of the healthcare system, particularly where individuals experience multiple forms of disadvantage. The discussion reinforced the importance of ensuring that future cancer services recognise and support carers as an essential part of the patient’s journey.
Questions and Discussion
Q1. Why is it particularly important to understand the experiences of Black and minority ethnic women living with cancer?
Forum members discussed how people from Black and minority ethnic communities can face additional barriers throughout the cancer pathway. These included language differences, lower awareness of symptoms, cultural beliefs about illness, disability, mental health needs and difficulties accessing appropriate support. It was suggested that these factors can contribute to delayed diagnosis and poorer outcomes if services fail to respond to people’s individual circumstances.
Response
Ruby welcomed these observations and explained that hearing directly from carers is essential to understanding these inequalities. She noted that while patients’ experiences are being explored separately, the research hopes to capture the perspectives of carers to identify barriers that may otherwise remain invisible. Together, these findings will help build a more complete understanding of how cancer services can better support families from diverse communities.
Q2. How can cancer services improve early diagnosis within ethnic communities?
The discussion highlighted the importance of encouraging earlier engagement with screening programmes and improving awareness of cancer symptoms within local communities. Examples were shared of women whose diagnoses were delayed after repeated visits to healthcare services, alongside reflections on the positive impact that culturally appropriate information and trusted community support can have in encouraging people to attend screening appointments. Participants emphasised that services need to communicate in ways that are accessible and sensitive to different cultural backgrounds.
Response
The discussion reinforced that improving awareness, reducing communication barriers and working more closely with communities could contribute to earlier diagnosis and improved outcomes. The research aims to identify where carers believe improvements can be made across the diagnostic and treatment journey, helping to inform future service development.
Q3. What role do unpaid carers play throughout the cancer journey?
A final discussion focused on the often unseen contribution of unpaid carers. Members described how carers frequently provide emotional reassurance, accompany relatives to appointments, help explain medical information, advocate for concerns to be taken seriously and support individuals throughout treatment and recovery. It was recognised that carers often become the link between patients, families and healthcare professionals, particularly where communication barriers or additional health conditions exist.
Response
Ruby explained that this is precisely why the study is focusing on carers’ perspectives. Understanding their experiences will provide valuable evidence about the practical and emotional challenges carers face and identify ways that cancer services can better recognise and support them alongside the person receiving treatment.
NHS England – Allied Health Professions Strategy
Steve Tolan (Deputy Chief Allied Health Professions Officer) & Barry O’Donovan (Senior Programme Manager)
Steve Tolan and Barry O’Donovan from NHS England joined the forum to begin an important conversation about developing a new national Allied Health Professions (AHP) Strategy. Rather than presenting a completed strategy for consultation, they explained that NHS England wanted to engage with carers, patients and communities before the strategy was written, ensuring that lived experience would help shape its priorities from the outset.
Steve introduced the Allied Health Professions as the third largest clinical workforce in the NHS, comprising fourteen professions including occupational therapists, physiotherapists, speech and language therapists, dietitians, radiographers and several others. He explained that these professionals work across virtually every part of health and care, from mental health and primary care to acute hospitals, rehabilitation and community services, making their contribution central to improving patient outcomes.
Barry explained that NHS England was seeking honest feedback on what Allied Health Professionals currently do well and, more importantly, where improvements were needed over the next five years. The discussion centred around several key questions, including how AHPs could help people stay healthier for longer, improve prevention, reduce health inequalities, remove barriers to accessing care, and work more effectively across different care settings. Forum members were also encouraged to complete a wider national survey, but NHS England emphasised that hearing directly from unpaid carers during the meeting would provide invaluable insight into the everyday realities experienced by families supporting loved ones with mental illness and other long-term conditions.
What followed was one of the richest discussions of the meeting, with carers sharing personal experiences of navigating health services and offering practical recommendations for change. Contributors acknowledged the important work undertaken by Allied Health Professionals but stressed that future success would depend upon moving beyond clinical interventions alone. Members called for greater emphasis on prevention rather than crisis management, stronger action to address racism and health inequalities, more personalised and culturally responsive care, improved communication with families and better recognition of unpaid carers as essential partners within the healthcare system. NHS England representatives listened carefully throughout the discussion, responding positively to the feedback and confirming that the experiences shared during the forum would help inform the development of the national strategy.
Feedback from Forum Members
There was a lot more feedback, but I have only included 4 feedback to the strategy
Feedback 1 – Prevention must become the priority, not simply responding to crisis
One of the strongest messages from the discussion was that health services often intervene too late. Contributors explained that many families recognise early warning signs long before services become involved, yet support is frequently unavailable until a situation has escalated into crisis. Members argued that Allied Health Professionals are well placed to identify emerging concerns earlier, particularly for people living with long-term mental health conditions, autism, learning disabilities and chronic physical illnesses. Earlier intervention, they suggested, would reduce avoidable hospital admissions while improving outcomes for both patients and carers.
NHS England acknowledged this feedback, explaining that one of the key ambitions of the new strategy is to support the wider NHS objective of shifting from reactive treatment towards prevention. Representatives welcomed examples from carers illustrating where earlier support could make the greatest difference.
Feedback 2 – Tackling racism and health inequalities requires more than training
Forum members spoke candidly about experiences of racism, discrimination and unequal treatment within health services. While acknowledging that cultural awareness training is becoming more common, contributors argued that training alone is insufficient unless accompanied by accountability and meaningful changes in practice. Some described inaccurate clinical records, assumptions based on ethnicity and situations where concerns raised by families were not properly reflected in care planning. There was a strong call for services to improve communication, record keeping and trauma-informed practice, ensuring that staff understand the impact of racism on health outcomes rather than viewing cultural competence as a one-off training exercise.
NHS England representatives recognised that tackling health inequalities and promoting anti-racist practice were already identified as “non-negotiable” priorities within the developing strategy. They explained that this was precisely why engagement with forums such as this was so valuable, helping ensure that policy reflects the real experiences of people using NHS services.
Feedback 3 – Unpaid carers must be recognised as equal partners in care
A recurring theme throughout the discussion was the role of unpaid carers within healthcare systems. Members explained that carers are often the people coordinating appointments, supporting communication, monitoring deterioration, providing emotional support and helping professionals understand an individual’s needs. Despite this, carers frequently remain unidentified by services or receive little information and support themselves. Contributors argued that Allied Health Professionals should routinely identify carers, involve them in care planning where appropriate and recognise them as equal partners whose knowledge can significantly improve patient outcomes.
NHS England welcomed these comments and recognised that carers play a fundamental role in delivering effective, preventative care. The examples shared demonstrated how stronger partnerships with carers could improve continuity of care while helping services better understand the needs of individuals and families.
Feedback 4 – Share and learn from examples of excellent practice
The discussion concluded with examples of positive experiences that illustrated what good care can look like. One contributor described receiving outstanding support from an Occupational Therapist who not only arranged practical adaptations within the home but also followed up afterwards to ensure everything was working well. Members suggested that NHS England should identify and promote examples of excellent practice across the Allied Health Professions so that high standards become the norm rather than the exception. Ideas included involving patients and carers more directly in evaluating services and using lived experience to help identify what compassionate, person-centred care looks like in practice.
West London Health Trust – PCREF Update
Linda Thomas – Co-producing an Independent PCREF Advisory Group
Linda Thomas, Co-production and Partnerships Development Manager at West London NHS Trust, opened the Trust’s presentation by describing how they have developed an independent PCREF Advisory Group designed to challenge, support and hold the Trust to account as a “critical friend.” Rather than creating a traditional advisory panel, West London NHS Trust commissioned three established community organisations GOS&D (Ealing), SHEWISE (Hounslow) and Managing Our Mental (Hammersmith & Fulham) to help design the model and understand how communities genuinely want to engage with mental health services. The approach seeks to increase diversity of voices, identify barriers preventing community involvement and rebuild trust between local communities and the Trust. Linda explained that members of the advisory group now sit alongside Trust leaders as equal partners on the Steering Group, while work is progressing to secure long-term funding to sustain the network and strengthen relationships with community organisations. The initiative demonstrates how co-production can move beyond consultation towards genuine shared decision-making between the NHS and the communities it serves.
Debbie Best – PCREF Carer Lead: Racial Trauma Workshops
Debbie Best, PCREF Carer Lead at West London NHS Trust, presented the development of the Trust’s Racial Trauma Workshops, which were co-designed alongside Natalie Mark (PCREF Lived Experience Lead), Dr Anne Aiyegbusi and Chief Nurse Gillian Kelly. Debbie explained that the workshops were created in response to the persistent racial inequalities experienced within mental health services, including disproportionate detention under the Mental Health Act, restrictive interventions, mistrust of services and the re-traumatisation experienced by many people from ethnic communities.
Rather than delivering traditional equality training, the workshops create reflective spaces where staff openly discuss difficult issues including trust, power, emotional labour, racialised assumptions and barriers to culturally safe care. Debbie emphasised that racial trauma affects not only patients but also carers and NHS staff, and that creating psychologically safe spaces for honest conversations is an essential step towards improving relationships, reducing inequalities and embedding the aims of the Patient and Carer Race Equality Framework (PCREF) across mental health services.
Christine – Triangle of Care, Carer Awareness Training and PCREF
Christine, speaking as a carer representative involved in co-production, highlighted how West London NHS Trust has successfully embedded carers within staff training through the Triangle of Care programme. She explained that the Trust achieved Stage 2 Triangle of Care accreditation in March 2026 and has developed Carer Awareness Training that is designed and delivered alongside carers themselves.
The training introduces staff to both the Triangle of Care and the Patient and Carer Race Equality Framework, helping colleagues understand the importance of recognising carers as equal partners while strengthening communication and collaboration with families. Christine also announced that West London NHS Trust has been selected as one of only thirteen national pilot sites testing the integration of Triangle of Care and PCREF guidance over the next twelve months. Ten clinical teams will take part in reviewing and implementing the updated guidance, ensuring that national best practice is informed by both professional expertise and lived experience.
Debbie Best – Ethnicity Data Capture Project
Debbie concluded the presentation by introducing West London NHS Trust’s Ethnicity Data Capture Project, funded through a small grant from the NHS Race and Health Observatory. She explained that the project aims to improve understanding of why ethnicity information is not always accurately recorded and why some communities remain reluctant to share this information. Working alongside community organisations including SHEWISE, Our Voices and Managing Our Mental, the Trust has co-produced a range of resources including information leaflets, awareness films, social media campaigns, frequently asked questions and staff training materials. The campaign, titled “Seen, Heard, Counted,” aims to reassure communities that ethnicity data is collected to improve healthcare, tackle inequalities and ensure services better reflect the needs of local populations. Debbie explained that the next phase of the project will focus on wider public awareness and rolling out staff training across the Trust to improve confidence, transparency and trust around ethnicity data collection.
Bren McInerney
Race Equality Observatory
Bren McInerney provided an update on behalf of the NHS Race and Health Observatory, explaining that although he works closely with the organisation through its Stakeholder Engagement Group, he was speaking from his role supporting engagement rather than as an NHS employee. He began by outlining the Observatory’s purpose, which is to identify, understand and help reduce ethnic inequalities across health and social care through research, evidence and partnership working.
Bren highlighted that the Observatory has now produced a growing body of evidence to support NHS organisations in tackling inequalities and emphasised that this work must ultimately lead to practical improvements in services rather than simply producing reports. He also noted that the Observatory’s current funding arrangement is due for renewal in 2027, making it increasingly important to demonstrate the value and impact of its work across the NHS. The presentation encouraged attendees to remain engaged with the Observatory’s programmes and continue sharing lived experience to strengthen the evidence base for future policy and service improvement.
Bren also highlighted several recent initiatives designed to strengthen collaboration between the NHS and local communities. These included the publication of the Trauma-Informed Care and Racialised Communities Report, which explores how trauma-informed approaches can better respond to the experiences of people affected by racism and discrimination. He also described the Observatory’s Small Grants Programme, which has supported community-led projects across England, and introduced a new Community Participation and Co-production Resource developed in partnership with the Race Equality Foundation. This resource aims to help NHS organisations and Integrated Care Boards build stronger relationships with communities, improve meaningful involvement in decision-making and ensure that local knowledge helps shape healthcare services. Bren concluded by encouraging carers, voluntary organisations and community leaders to make use of these resources, share them widely and continue influencing the national conversation on race equality within health services.
What does racial inequality in mental health really look like from the perspective of an unpaid carer?
In this powerful spoken-word poem, Matthew McKenzie explores the realities of racism, bias, exclusion, stigma, and unequal treatment experienced by many ethnic communities when accessing mental health services.
Through an A–R alphabet structure, this poem highlights why the Patient and Carer Race Equality Framework (PCREF) matters and why genuine cultural understanding, listening, and inclusion are essential to improving care.
This poem is part of my 200-poem PCREF collection, Unpaid, Unseen and Yet Unbroken, giving voice to the experiences of unpaid carers supporting relatives with mental illness while challenging racial inequalities across mental health services.
A Caring Mind 