By Matthew McKenzie – Carers UK Volunteer and Ambassador
On Friday 6 June, I had the pleasure of joining Carers Uk and fellow Carers UK volunteers at a picnic in St James’s Park, London a brilliant afternoon full of connection, recognition, and shared purpose. The weather managed to hold “Thank Goodness!”
As a Carers UK volunteer and ambassador, it was great to see so many familiar faces and meet new ones, all united by a commitment to supporting unpaid carers across the UK. The picnic was a chance for us to unwind, share stories, and enjoy the beautiful surroundings of the park.
One of the highlights of the afternoon was the volunteer awards recognising the time, energy, and dedication that so many of us give. It was humbling to stand alongside other passionate volunteers and celebrate each other’s contributions.
Volunteers’ Week is a vital opportunity to shine a light on the incredible work of volunteers across the country and to say thank you for the real difference they make every day.
Later in the day, we teamed up to distribute Carers UK membership resources around the area, helping to raise awareness and connect more carers to support. You can check the link below to find resources.
I would like to extend a huge thank you to everyone who helped organise the event and to those who brought food and drink. Moments like these remind us that we’re not alone in what we do as Carers – we’re part of a caring, committed community.
The meeting focused on carer involvement and representation across different regions, with participants discussing their roles in supporting carers and addressing discrimination. The main focus for this meeting was on “What does good look like?” when it comes to Triangle of Care and PCREF.
The group explored the Triangle of Care initiative and its five key elements, including discussions about medication-related challenges and the need for better communication between healthcare providers and carers. The conversation ended with conversations about improving carer support systems, including the importance of advocacy, training, and creating safe spaces for carers to share concerns confidentially.
By Matthew McKenzie, carer activist Date: May 24, 2025
In an evening charged with truth, courage, and community spirit, Think Tenacity Academy CIC hosted one of the most impactful events of Mental Health Awareness Week 2025. Held at Think Tenacity HQ in Vauxhall and themed #BlackStorytellingCommunity, the gathering was more than a panel or workshop, it was a safe space for healing through shared experience.
The event was led by Bella Rareworld, Think Tenacity’s CEO and a mental health advocate living with bipolar disorder, the event was built on a legacy of ancestral wisdom: “Before slavery, social media, or podcasts, we passed on strength and knowledge through storytelling,” she reminded the audience. “Tonight, we reclaim that legacy not just to speak, but to heal, empower, and connect.”
On May 1st, 2025, Cygnet Health Care hosted its landmark Co-Production in Commissioning Conference at the iconic Villa Park, Birmingham. More than just a professional gathering, the event was a manifesto for a more inclusive, compassionate, and equitable model of care, driven by people with lived experience, carers, clinicians, and commissioners alike.
Packed with powerful keynotes, practical models, and heartfelt stories, the day was as emotionally resonant as it was strategically focused.
Welcome to another blog post from carer activist Matthew McKenzie. Did you know I am a stakeholder member of NHS England’s “Cancer Improvement Collaborative (CiC)” cohort 5? We had our Cancer Experience of Care Improvement Collaborative event, which was held over at Coin Street Neighbourhood Centre on the 5th of March.
The event was to recognise the work carried out by participants who were part of the cohort, these being the Cancer Alliances in England.
CiC Cohort 5 focus is on improving experience of cancer care for patients with a pre-existing condition (mental health, learning disability, autism and dementia) and their families and unpaid carers.
As a carer of lived experience, I was included in welcoming attendees and helping to promote the event. The recognition event was well attended and facilities were excellent. To start off with the event, we had a welcome Carl Shaw (Learning Disability & Autism Adviser NHS England) and Anna Rarity (Cancer Experience of Care Programme Manager of the National Cancer Programme) gave an Introduction to the Cancer Improvement Collaborative, which was easy to follow.
We were provided with a welcome pack which included the agenda for the day, which also included the commonly used Acronyms of the cancer programme.
We then had an introduction of the National Cancer Programme from Jodie Moffat who is the Deputy Director, Policy and Strategy of the NHS Cancer Programme.
Throughout the day there were several Project team presentations from the following
South East London Cancer Alliance East Midlands Cancer Alliance Humber & North Yorkshire Cancer Alliance March Primary Care Network Birmingham & Solihull ICB Blackpool Teaching hospitals North East & North Cumbria Bristol, North Somerset & South Gloucestershire ICB Coventry & Warwickshire
Highlights of the event was watching the carer story to show NHS England’s commitment to carers. Since I focus on unpaid carers, it was good to hear the impact of caring and how the carer managed their role as a cancer caregiver.
Another highlight was on recognising the archievements of Claire Marshall (Experience of Care Lead, Experience & Partnerships Team, People & Communities at NHS England) as she is moving on to another role.
I noticed some of the presentations allowed those with a learning disability or mental health to co-present and be part of the recognition. As the focus should allow those who use the services to co-produce and co-present the successes.
There was also a chance to network with others at the event during Lunch. I noticed some attendees were given different coloured badges to show if they were ok to chat or socialise. We cannot assume everyone is in the best mood to talk as they could be going through painful and stigmatising experiences.
The lunch provided was very good, which included vegan food. I also caught up with a few attendees and representatives from cancer alliances.
There was also a special presentation from the Quality Improvement Team from Great Ormond Street Hospital – Caitlin McGovern and Nuwanthi Yapa Mahathanthila. They presented on how Quality improvement proceeded at the hospital
The last update was from Dr Neil Churchill OBE who is the director for people and communities at NHS England. Neil spoke about the importance of the Cancer Improvement programme, raising awareness and including people’s experiences.
All in all, I found the CiC Recognition event an important way to update those involved in cancer improvement. It is important we include those who go though lived experience of cancer, but especially include those who take that extra step to use their experience to improve cancer care. That being both patient and those providing care.
I would also like to say “Well done” to Marsh Primary Care Network – Kent and Medway on winning the Great Idea Award for their project “Improving Cancer Awareness for Care Home Staff”
As you might already know from my previous blogs. I am now a carer ambassador for Cygnet group. Cygnet is a leading provider of mental health, autism and learning disability services. As a carer I often use my knowledge and experience to provide insight and training over the years.
Some professionals might frown as to why service users and carers might wish to help train staff, but the voice of lived experience should not be ignored. There are many reasons why professionals should include users of services in training staff.
We should note that carers also use services as they seek carer support groups, information about services and sometimes counselling.
We use their services, although professionals are experts for a reason, they spend years training for their profession. They know far more about their field than I would acknowledge, but there is a big difference. Professionals provide a service and we use that service, if those services second guess what we require then this leaves room for errors. To make matters challenging, services do change from time to time and it is so important carers and service users feedback on their experiences.
We all need to work together. In the time of ever deminishing resources, it is a waste of time that patient, professional and carer battle each other to be heard. In the long run, we all wish for health and wellbeing for all of us. Working together means learning from each other.
Professionals can and will make mistakes, so include the voice of lived experience can show professionals are willing to learn from mistakes. These mistakes can come from second guessing what users might require, being pressured in their role or just not paying attention.
There are many more reasons why lived experience should be empowered to help train professionals. So when Cygnet group offered a chance to film my thoughts about carer experience, I jumped at the chance.
The film will be used as an online resource to all staff as I gave my views on the importance of unpaid carers, lived experience and carer advocacy.
I value an organisation that helps provide the voice of patient and care voices.
Those voices help shape how services can be provided and this should be the future of healthcare were we work as a team.
The Royal College of Psychiatrists are collecting stories from people with lived experience of long term mental health conditions. These stories will support the work of the Royal College of Psychiatrist’s Faculty of Rehabilitation & Social Psychiatry. The Faculty is made up of psychiatrists, service users and carer representatives with experience of psychiatric rehabilitation services. The Royal College of Psychiatrist want to understand and represent such experiences.
You can download the Lived experienced submission form in the link below.
Some of the stories collected will be placed on the Royal College of Psychiatrist Faculty website. They may also use them in future reports and campaigns.
The Royal College of Psychiatrist appreciate that sharing your story with others can be difficult; you may need support from carers or the individual who has invited you to participate.
Taking part in their project is entirely voluntary, and stories will be anonymised.
Patients and carers with lived experience are leading on this project.
Any queries about the project please email stella.galea@rcpsych.ac.uk.
A Caring Mind 