By Matthew McKenzie, Cygnet PCREF Carer Lead and Carer Ambassador
On 1 October 2026, I attended Greater Manchester Mental Health NHS Foundation Trust’s Patient and Carer Race Equality Framework (PCREF) Community Event at St Thomas Centre in Manchester.
I attended in my role as Cygnet’s PCREF Carer Lead and Carer Ambassador, sharing Cygnet carer information alongside wider resources on the Triangle of Care and carer voices. I wanted to build relationships, learn from the discussions and keep the experiences of unpaid carers visible within conversations about racial inequality in mental health care, although at times i will support events as Triangle of Care ambassador.
The event followed my visit to Cygnet Lodge Salford the previous day, where I met staff and discussed carer involvement, PCREF and the support I could offer through lived experience and training. Together, these opportunities connected conversations within a service with the wider work of engaging communities.
I came away from the GMMH event recognising its importance, but also feeling that there is unfinished business. That reflection comes from my perspective as a lived experience carer lead: someone who wants PCREF to make a difference to families’ everyday experiences of mental health services.
Why I was there
My caring experience shapes how I approach these events. Having supported my mother, who lived with schizophrenia, I know that families can carry considerable knowledge, responsibility and worry while struggling to have their voices heard.
For carers from racialised communities, those experiences may also involve discrimination, assumptions about culture or faith, language barriers and mistrust shaped by previous encounters with services.
These are some of the reasons why I see the carer element of PCREF as essential. Families need opportunities to influence how services work, explain what has happened to them and help judge whether care is improving.
Representing Cygnet gave me an opportunity to bring that perspective into a wider discussion. It also allowed me to share resources, hear how another organisation is approaching PCREF and consider what learning could be brought back into our own work.
Making carer information visible
The Community Marketplace brought together organisations working across mental health, race equality, language support and community wellbeing.
My space was listed in the programme as “Triangle of Care and Carer Voices”. I shared Cygnet carer information alongside the wider carer resources I had brought. Carers Manchester North was positioned next to me, providing another visible connection to support for unpaid carers.
This mattered because a discussion about race equality in mental health needs to connect with the people supporting relatives and friends outside services. Information on a stall can provide an opening for those conversations, particularly for people who may not describe themselves as carers or know what support is available.
I also made a connection with Zaib from Carers Manchester North, who expressed interest in my work and the groups I facilitate. That is a relationship I hope to develop through sharing information about my carer forums and opportunities for engagement.
For me, building relationships is an ongoing part of the role. It involves following up, understanding what others do and finding useful ways to support each other.
A clear message about implementation
The opening contributions from Salli Midgley and Cllr Dr Jacqui Dyer MBE set out why this work matters.
One message that stayed with me was “the need to move beyond awareness and activity towards implementation and impact“. Events, training and plans have value, but the question remains: what difference are they making to people’s access to support, experiences of care and health outcomes?
That is a question carers can help answer.
A family may not know the name of a framework, but they know whether someone listened when they raised a concern. They know whether information was understandable, whether their relative’s cultural needs were considered and whether they felt involved in planning the next stage of care.
That is where PCREF needs to become visible.
Hearing about GMMH’s three-year plan
Honey Ogunleye, GMMH’s PCREF Lead, and Charles Kwaku-Odoi, Chief Executive of the Caribbean and African Health Network, discussed the community engagement that informed the Trust’s board-approved three-year PCREF plan.
I welcomed the emphasis on returning to communities and showing how their contributions had shaped priorities. Asking people to share difficult experiences creates a responsibility to explain what happens afterwards.
The presentation included priorities around reviewing interpretation and language support, monitoring waiting times, developing anti-racist practice standards and incorporating cultural identity into care and discharge planning.
It also described plans to strengthen community involvement in governance and develop measures of progress.
These are important areas. From a carer perspective, language support and culturally responsive communication can affect whether families understand what is happening and feel able to participate. Care and discharge planning are also points where families need clear information and opportunities to raise questions.
However, a published plan is a starting point. Its value will become clearer as commitments are delivered and people can describe what has changed.
Community challenge was a strength
The care-group showcases and Race Equity Unfiltered panel created opportunities to question local priorities and discuss what meaningful progress should look like.
There was challenge around bureaucracy, workforce diversity, the role of community organisations and whether further training alone would be enough to change practice.
Another concern was familiar to anyone who has contributed to consultation: people give feedback, but do they hear what happens because of it?
I appreciated that these questions were raised openly. Community engagement needs room for disagreement and scrutiny. People should be able to question an organisation’s approach without being treated as an obstacle to progress.
I also recognised the willingness of staff to acknowledge that more needed to be done. Honest discussion about gaps is useful when it leads to a clear response.
The next step is to connect that openness with action: what will change, who will take responsibility and how will communities hear about progress?
My experience of the day
Although community partners were present and contributed, I found parts of the day intensive. There was a great deal to listen to and consider, including care-group structures, governance arrangements, data systems and implementation priorities.
Those subjects matter, but at times the event felt closer to an NHS working session than a gathering shaped around the experiences of unpaid carers.
I say this as a reflection on how the day felt to me. I could see the effort behind the event and the importance of bringing staff and communities together. I also think it is worth asking how the format could make participation easier for someone attending while managing the pressures of caring.
Clear language, manageable activities and time to discuss everyday experiences can help people connect organisational plans with their own lives.
Where were carers’ voices?
Carers were included in the presentation, the marketplace and the purpose of the lived experience listening space. I want to recognise that.
However, I did not feel that unpaid carers’ own accounts had a sufficiently visible place in the main discussions, maybe that might come at another GMM PCREF event?
This distinction matters. Carer organisations can provide support and valuable insight, while carers themselves bring knowledge of what it feels like to support someone through crisis, admission, rehabilitation and discharge.
I would have welcomed more explicit discussion of how racial inequality affects that caring role. For example, what happens when a family’s concerns are dismissed? How do language barriers affect communication with carers? How are cultural or faith needs understood? What support is offered to a carer whose own wellbeing is suffering?
These questions need to be part of how progress is assessed.
The event’s lived experience listening space was a valuable part of the programme. My hope is that future work will build on it with a clearer and sustained place for unpaid carers, including those who are less confident speaking in a large room.
Data needs to connect with experience
The afternoon’s focus on data explained work to improve ethnicity recording and develop a PCREF dashboard.
I understood why this matters. Missing or inaccurate information makes it harder to identify inequalities and assess whether services are improving. The co-produced video, BSL provision and easy-read material also showed attention to making information more accessible.
From my perspective, the next question is how that information connects with lived experience.
Recording someone’s ethnicity more consistently is useful, but it does not by itself tell us whether they felt respected or whether their family was listened to. Measures of access and outcomes need to sit alongside people’s accounts of care.
For carers, I would want that learning to include communication, involvement in decisions, responses to concerns and support during discharge. We need to understand what the figures mean in people’s lives.
Community influence must continue after the event
The presentation described an opportunity for community involvement in a PCREF Oversight and Delivery Group. It also asked practical questions about representation, influence, escalation, accessibility and reporting back.
I was pleased to see payment and adjustments included in those questions. Meaningful participation depends on whether people can realistically take part.
Carers may need flexible meeting times, remote access or support with replacement care. They may also need time to understand papers and confidence that speaking honestly will lead to a respectful response.
For me, community involvement needs a clear route into decisions. People should know how their recommendations are considered, how they can raise concerns when progress stalls and how the organisation will explain its response.
I expect NHS organisations to engage with the communities they serve. That engagement needs to continue between events, particularly with people whose trust has been damaged or whose voices are often overlooked.
What I will take back into my Cygnet work
The event gave me useful points to reflect on in my role as Cygnet’s PCREF Carer Lead and Carer Ambassador.
The first is the importance of keeping carer information visible alongside wider race equality work. The stall helped me do that, but information also needs to lead to opportunities for conversation and involvement.
The second is to make the link between PCREF and everyday caring experiences clearer. Through my site visits, masterclasses and discussions with staff, I can continue asking how families experience communication, cultural understanding and involvement in care.
The third is to keep building relationships with carer organisations and community partners. Those connections can help us hear perspectives beyond our own services and learn where support is needed.
Finally, I want to keep asking what happens after feedback is received. Carers need to know that their time and experiences have contributed to something tangible.
These are questions I bring to Cygnet as well as to NHS services. My role gives me a responsibility to listen, share learning and offer constructive challenge.
Important work, with unfinished business
I am glad I attended the GMMH PCREF Community Event. It brought people together, made space for challenge and showed work being developed around race equality, community relationships and accountability.
I also left with questions about how unpaid carers can become more visible and influential within that work.
Calling this unfinished business reflects the purpose of PCREF. It asks organisations to examine inequalities, listen to people and keep improving. A successful event can open conversations; sustained work afterwards is what will give those conversations meaning.
Thank you to the organisers, community partners and everyone who contributed. I hope the next stage brings clearer feedback, visible progress and more opportunities for unpaid carers to shape what happens.
As a lived experience carer lead, I want families to be able to recognise the difference in their own encounters with services and to have a voice when that difference has yet to reach them.
