By Matthew McKenzie – Chair of Cancer Caregiver group
Supporting a loved one through a cancer diagnosis is a journey that often goes unseen. Family members, partners, friends, and other caregivers provide emotional support, help navigate appointments, and stand alongside patients during one of the most challenging periods of their lives. Yet their experiences are rarely heard.
Researchers at University College London (UCL) are inviting people who have supported someone with endometrial (womb) cancer to take part in a research study exploring the cancer diagnostic journey. The study is particularly interested in hearing from people who have supported women experiencing economic hardship, as well as Black women, who are more likely to be diagnosed with endometrial cancer at a later stage, when treatment can be more difficult.
Your Story Matters
Every caregiver’s experience provides valuable insight into the challenges people face before, during, and after a cancer diagnosis. By sharing your story, you can help researchers better understand the barriers to timely diagnosis and identify ways to improve support for future patients and their families.
Your voice could contribute to research that helps reduce health inequalities and improve cancer care across the UK.
Who Can Take Part?
You may be eligible if:
You are 18 years or older.
You supported a friend or family member diagnosed with endometrial (womb) cancer.
The person you supported completed treatment (such as surgery, chemotherapy, or radiotherapy) within the last 2–5 years.
Their cancer treatment took place in the UK.
Your experience involved economic hardship.
You are willing to participate in a one-hour interview.
What’s Involved?
Participants will be invited to take part in a one-hour interview, either online or at UCL. Translation support is available for people whose first language is not English, and participants will receive a gift card as a thank-you for their time.
Interested?
If you think you may be eligible or would like to learn more, please contact the research team:
Every year on 4 February, World Cancer Day brings people together to raise awareness, inspire action, and support everyone affected by cancer. This year’s theme, United By Unique, reminds us that every cancer experience is different yet no one should face it alone.
Behind many cancer journeys are unpaid caregivers. They are partners, friends, parents and family members who provide emotional support, organise appointments, manage daily routines, and help loved ones navigate some of life’s most difficult moments. Their contribution is invaluable, but too often it goes unseen.
To mark World Cancer Day 2026, I have created a short video highlighting the vital role of unpaid cancer caregivers and the importance of fair, person-centred care across the UK. The video also reflects key messages from Macmillan Cancer Support, including the urgent need to address inequalities in cancer care and ensure that everyone receives the support they need, when they need it most.
Also for World Cancer day 2026comes alongside the newly released National Cancer Plan for England, which outlines ambitions to improve early diagnosis, treatment and personalised support so more people can live well with and beyond cancer. You can read more about the Plan here: https://www.gov.uk/government/publications/national-cancer-plan-for-england
At least every 75 seconds, someone in the UK is diagnosed with cancer. In that moment, lives change not only for the person diagnosed, but also for those who step into caregiving roles. By recognising caregivers and amplifying their voices, we can help build a more compassionate and supportive future for everyone affected by cancer.
This World Cancer Day, we invite you to take a moment to reflect, learn, and share. By raising awareness and working together, we can support unpaid caregivers, challenge inequalities in care, and help create a future where no one feels lost or alone.
Welcome to a brief update from Carer activist Matthew McKenzie on the national cancer carer forum.
This group is online and is a mix of a peer group and engagement for those who care for someone with cancer.
Quick update for the Cancer carer group October 2024
Matthew, a mental health advocate, hosted the National Cancer Carers Forum and discussed the challenges of being a cancer caregiver, emphasizing the importance of understanding the diagnosis and treatment plan, seeking support, and planning for the future.
Also discussed was practical day-to-day care for someone undergoing cancer treatment, the importance of self-reflection and mental health support for carers, and the need for caregivers to advocate for patients and manage potential side effects of treatments. The conversation ended with requests for future discussions on accessing clinical trials, supporting caregivers’ mental health, and guidance on what to do if the primary caregiver is unavailable.
Understanding Diagnosis and Treatment Plans
Matthew discussed the importance of understanding the diagnosis and treatment plan for a loved one, particularly in mental health cases. He emphasized the need to be aware of any side effects from medication or treatment and to relay these concerns to the healthcare professionals. Matthew also mentioned the potential for a future session focusing on engaging with the NHS professionals and understanding who to ask questions to at different stages of the cancer journey.
Cancer Caregiving, Self-Reflection, and Planning
Matthew discussed the importance of self-reflection and planning for future recovery and well-being, particularly in the context of cancer caregiving. He emphasized the need for mental health support for cancer carers emotional struggles and the importance of setting goals and monitoring changes in the condition of the loved one. Matthew also stressed the importance of educating oneself about the cancer condition and seeking support from different groups. He suggested that training and workshops could be beneficial for gaining insight and planning for the future
Caregiver Challenges and Emotional Support
Matthew discussed the challenges faced by caregivers in advocating for patients and managing potential side effects of treatments. He suggested that caregivers should attend medical appointments to stay informed and asked for questions to be emailed to him for further research. Matthew also emphasized the importance of emotional support for both the patient and the caregiver, suggesting that caregivers should be sensitive to the patient’s feelings and avoid constant positivity. He mentioned that he would run a group again in the next month to further discuss these topics.
This concludes the brief update of the National cancer care group for October
We dont often always notice, but behind someone diagnosed with cancer is usually a close relative or friend. Often we focus on what support can be provided to the cancer patient. The person affected by this awful disease can be fighting for their very life and will need all the support they can get.
but what about the cancer caregiver?
All too often we may forget that the carer will need support for themselves as well. It might not even dawn upon cancer carers as they focus all their efforts on caring for their loved one. It might be a partner caring for their other partner, a young carer supporting their parent. Or even a parent caring for an elderly relative. The caring situations can be long, complex and emotionally trying.
The situation above and many other reasons are why we need to raise awareness for cancer caregivers. It can be so easy to be hidden as a carer and hope for the best. Just because the carer is not suffering the physical and emotional affects of cancer, does not mean they should not be given support.
With Cancer Support Macmillan being the UK’s leading charities fighting against cancer, I help raise awareness of families affected by Cancer. Cancer is not contagious, but anxiety, uncertainty and depression cancer brings will affect those close by.
Not everyone will think of themselves as a carer, they are more than happy to focus all their efforts just so their loved ones see another day. It is so important we stress to someone caring that they do have access to support and this includes their carer’s rights.
No one should have to give care if it makes their quality of life suffer. Those caring for someone might need emotional support. They might even need their caring situation assessed, especially if the carer is unable to work. Some people caring for someone with cancer might actually need time off for work to support the cancer patient. This links to carer’s rights at work.
With the London Cancer carer forum, which I run online for the last Wednesday of the month. I seek to bring cancer carers together to hear experiences and feedback. Caring for someone with cancer is not the same as caring for someone with a broken leg. Sometimes we need to be heard by those who just “Get it!”. Cancer carers will not feel judged or feel as if they let someone down. Caring for someone without being heard or being connected can lead to isolation. Carers can feel they are coping by themselves without an outlet so it is important a group can provide some peer support.
If carer isolation was not the main issue, then there is advocacy and navigating the health and social care system. Not everyone will be skilled on knowing who to ask and what to ask if their caring role changes. Advocacy and health system guidance can be useful when a carer does not know where to turn. It is important carers have a chance to be referred to local support and be assessed on challenges in their role.
Cancer is one of the most difficult and damaging illness to impact friends and families. It could happen to any of us and it is so important we get the knowledge to lessen the impact. Please check out Macmillan’s London Cancer Community Newsletter for August 2024 for more information about Matthew McKenzie’s Cancer carer group and other cancer support initiatives below.
Welcome to another update from Carer activist Matthew McKenzie. I run many carer groups aimed at unpaid carers, one of them focuses on the experences of those caring for someone with Cancer.
Caring for a close relative can be an isolating experience, especially when trying to navigate the health and social care system. Carers can often be providing care and support behind the scenes almost forgetting about their own health and care needs.
If you are caring for someone with cancer, feel free to check out my next carer forum which I run once a month online for the last wednesday of that month.
I will also cover carer rights. Plus for those from minority backgrounds there is an exciting opportunity to share your experiences. We can often ignore those from ethnic groups providing support and unpaid care.
So Amrit Kaur from East London university is conducting research to hear from Punjabi Sikhs who have cared for someone with cancer. Please see poster below for more details or email Amrit at u2195627@uel.ac.uk
Welcome back to my carer website. As you might already know I faciliate the London Cancer Caregiver group. The group is supported by several London NHS trusts who also seek feedback on cancer services at 3 of their 8 hospitals.
You can take part
If you have been diagnosed with, or treated for cancer at Hammersmith, Charing Cross or St Mary’s hospitals within the last 12 months.
Or
If you have supported someone important to you who meets the above criteria. For example, you have attended appointments with them or helped them understand information.
If you wish to send feedback please contact – imperial.userinsights@nhs.net
Welcome to the April 2024 update of the London Cancer caregiver group. This is the only carer forum I run that focuses on a physical health illness, which is Cancer. The forum is carer led and provides a space and platform for carers to be heard and to find support.
This group runs on the last wednesday of the month as all other days at booked for the mental health carer groups. Since I am a volunteer with Macmillan Cancer Support and part of NHS England Cancer Improvement Collaborative, I often try to run the group to engage with cancer caregivers.
The group is smaller than my other mental health carer groups, but it has support from the Acute hospitals in London including Guys & St Thomas, Greenwich & Lewisham NHS trust, Kings College Hospital, University College London hospitals, Kingston Hospital, St Georges Univeristy hospital and more.
I am very grateful for the support of the NHS and Macmillan as we seek cancer caregiver empowerment.
April update of Cancer Carer forum
As usual I always welcome carers to connect at the start of the group. Most times I listen to carer feedback depending on their experiences. We welcome new and verteran carers.
The next session was on carer intevention. It is important families and carers are counted and supported, but also listened to.
So I was glad Gunn Grande, Emerita Professor of Palliative Care at the University of Manchester, plus Dr Gail Ewing from the University of Cambridge. The researchers presented on the “Carer Support Needs Assessment Tool Intervention” as known as CSNAT for short
Carers were interested in what interventions practitioners and health professionals can learn to support families and carers better. Sometimes the needs and support of carers are not always apparent.
Taken from the CSNAT website. “CSNAT-I is an intervention for supporting carers (family members/friends in an unpaid supportive role), delivered using a five-stage person-centred process of assessment and support. The intervention uses an evidence-based, comprehensive tool (the CSNAT) comprising 15 domains (broad areas of support need).”
Professor Gunn presented on why carer intervention is so important. She also asked if any of the following themes presented themselves when engaging with carers
Prof Gunn then described the 5 stages of the CSNAT tool, which the practictioner needs to go through with the caregiver.
Introduce CSNAT-I
Carer considers needs
Assessment conversation
Shared action plan
Shared review
The group got to ask quite a few questions on CSNAT and we were delighted that the researchers had time for caregivers.
If you are a health professional dealing with families and carers who care for someone with cancer, you can find more information off the website below.
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”
Here is the brief update of my London Cancer caregiver forum. This is the only group I run aimed at those caring for someone with a physical illness. Cancer can strike at any time and it not only affects the patient, but also the family, friend or unpaid carer.
The London Cancer carer forum gets support from Macmillan Cancer Support and also the hospitals in London. A number of the hospitals have been helpful to advertise a carer led community group, which I run voluntarly.
The speakers for the January London Cancer caregiver group were as follows.
Rachel Waddon – Macmillian community updates
Professor Sue Later – Supporting carers to manage pain medication in cancer patients
Caitlin Spooner RN – How does receiving a survival estimate affect the general health and wellbeing of people living with terminal cancer and their carers
Rachel from Macmillian Cancer Support presents
Rachel Waddon who is the new Macmillian Communities Manager for London and South East Regions has been very supportive for community groups. Rachel has provided engagement support and also helped support my cancer carer stall for front line engagement.
With the cancer carergiver network developing, it was great to have Rachel engage with the group. Rachel provided and summary of Macmillians Cancer Support services.
She took the group through the following support and information services.
Macmillan Website and Online Community
Macmillan Support Line (Nurses and Advisers)
Email campaign
Volunteer Services
Information from professionals
Information Centres
Wellbeing Coaches
Rachel also spoke about the impact of Money and Work when someone develops cancer, she mentioned what support is provided and also included the importance of Care Planning and Navigation, End of Life Care and Emotional and Practical support.
Rachel talked about Why there is a need to evolve Macmillan and how people will not settle for anything other than the best possible support for people living with cancer. As a charity, they can’t afford to stand still. Now more than ever, Macmillian need to evolve, taking every chance to make a difference.
If you are someone in London or the South-East of England who is living with or whose life is affected by cancer then please consider joining the Macmillan London Cancer Community. You’ll have opportunities to feed into cancer support services if you would like to and receive updates on information and cancer support in your local area. Join the Macmillan Cancer Networks.
Professor Sue Later from University of Southampton presents
There are lots of research into the experiences of patients, but did you know there is research which involves the experiences of those caring for someone with cancer?
Prof Sue Later presented her paper on “A community nurse-led intervention to support carers to manage pain medication in cancer patients at end of life” She spoke about what was known about unpaid carers.
Carers Play an important role in managing patients’ pain medicines at end of life.
Evidence suggests carers have concerns about pain medicines, and they feel they lack information and support.
Structured support for carers have not been adequately developed or tested for effectiveness.
Professor Sue paper presents what supports carers in managing medications at the end of life. The paper looks to raise the importance of intervention, which is acceptable, feasible and beneficial for patients and their carers. There is also identification of aspects of research design that could be tried on a larger scale.
The context of the paper looked at
How pain affects most people at end of life and can be severe for some.
Many patients at end of life report their preferred place of care.
Unpaid carers can be critical to medicines management and help patients to stay at home. This is done through knowledge and skills, monitoring and interpreting symptoms and also selecting, administering medicines effectiveness.
Prof Sue presented the objective of the research, which also led to a pathway of Cancer carer’s Medicines Management (CCMM) that is aimed at nurses.
Consent: Explain purpose, your role and consent from patient to discuss pain management with carer. Assess: Explore beliefs & previous experiences, assess support and prioritise skills needs. Review: Prescribe and review medicines chart Education: Provide coaching for educational and information Review: Make plans for review and provide resources Support: Naming of what has been learnt.
All in all, the purpose was to equip carers to support their loved ones at end of life.
Caitlin Spooner RN from University College London (Marie Curie Palliative Care Research Department) Presents
The next presenter to speak was Caitlin on the impact of diagnosis when someone is told how long to end of life. This is called Prognostication. Caitlin wanted to measure the outcomes and develop standards.
She also wanted to compare other studies, but also wanted to involve patients and their caregivers and what was important to them. When comparing previous studies, this had to be done through online databases. Caitlin used 5 online databases that included
Patients with advanced cancer or those caring for someone with advanced cancer
Different definitions of Prognostication “Estimating length of survival”
Quantitive studies reported outcomes of prognostication
From searching the online databases Caitlin extracted the following outcomes and grouped into 5 key areas.
Death
Physiological/clinical outcomes
Life Impact
Resource use
Adverse events
Through a systematic review the most common outcomes of prognostication were
Treatment preferences
prognostic awareness
Quality of life
Depression.
It is important to note diagnosis of cancer especially length of survival not only affects the patient, but those supporting the patient especially the carer. It is important to note the impact of diagnosis on the carer.
Welcome back to another blog post by Carer Activist Matthew McKenzie FRSA BEM. Notice something different here? Those strange titles at the end of my name.
Yes, its true, for 2024 I have been awareded a BEM for the kings honours list 2024. It is an amazing archievement to be recognised for my work to carers. I am sure to blog more about this later on, but for now I am back in activist mode.
Here is an update from my London Cancer Caregiver forum for December 2023. The London Cancer carer forum is one of my newest carer groups aimed at those caring for someone with Cancer. The forum allows a platform and network for carers to be heard, feedback and strengthen their identity. The group gets support from MacMillian, cancer alliances and surrounding hospitals.
I was quite unwell in December due to a nasty bug going around, but managed to run the group anyway. We were joined by Nilufa Lais from Marie Curie.
Marie Curie is a charity that provides expert hospice care wherever it’s needed. Their hospices help people with any illness they’re likely to die from, receive the support they need. This includes those that help care for them.
Marie Curie push for better end of life for all by campaigning and sharing research to change the system. Usually I would focus on those caring for someone with cancer, but at my carer stalls at the hospitals, I keep encountering carers whose loved ones are nearing their end of life.
Carers would ask me about end of life support, or they would talk to me about being lost in the system and not being heard as carers. Eventually I contacted Marie Curie as a network to support the London Cancer Carer forum.
Marie Curie were very kind and sent Nilufa who is a social worker based at Marie Curie Hampstead Hospice.
MARIE CURIE INTERVENTIONS
Nilufa talked to our group about what Marie Curie does. She mentioned about the different initiatives they have in place for carers. Marie Curie has a multi-disciplinary team to help identify carers who need support.
Nilufa gave a brief introduction to their Patient and Family Support Team, which consists of a variety of Professionals
Spiritual Lead Lead Art Therapist Lead Counsellor and Bereavement Co-Ordinator Principal Social Worker Lead Complementary Therapist Other social workers
We are hoping for updates from the team to my London Cancer carer forum at a later date. There might be a different set up at the other hospices Marie Curie has at different sites.
Their team offers different types of care to patients and carers. Carers are relatives/ friends of in-patients and out-patients, after care support as well. The primary carer is identified by the Patient.
At the hospice there is access to both emotional support and spiritual support, where you don’t have to be religious in order to access support from the Spiritual lead who provides a holistic form of care. She also has links to other Spiritual leads in the community and supports patients to access them if requested.
Other social workers can provide Emotional support, support with Housing, Finance, Benefits, Funeral Planning, Family issues, Safeguarding.
With the Art therapy it is for relatives who want to express themselves through Art and for those who want group sessions both are provided. Michele also holds online sessions of support for carers.
CARERS INVOLVED
Nilufa spoke about the number of carers involved, where Marie Curie provided a variety of support to post patient death, and the carers who appear every now and then. From January to September they conducted a Community Engagement project — speaking to people in the community about Death and Dying.
Marie Curie are in the process of recruiting a Children and Young person counsellor / Family counsellor to support children and young people. They also signpost onto relevant services if requested and they work closely with other Bereavement services at Marie Curie, as well as making referrals to external Bereavement service such as Winston Wish.
Nilufa finished up on campaigns they are working on as well as exchanging new ideas on how to engage more with carers. The following questions were asked at Marie Curie from our London Cancer carer forum.
QUESTIONS ASKED AT FORUM
What services are provided at other hospices? Is there a national policy on coping with death that Marie Curie follows? Does Marie Curie work with MacMillian on any projects? What is the pathway for carers to be included at Marie Curie? What are the majority of diagnosis for patients at Marie Curie? Who does the campaigning for better quality of treatment?
This is a brief update for my London Cancer Caregiver forum. I will try update for my other groups including ones that focus on those caring for someone with mental illness.
For more information about Marie Curie charity, see below
A Caring Mind 