Category Archives: Cancer carer group

Updates from the London carer group for those supporting someone with cancer

National Cancer Caregiver Forum – August 2026 update

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.

Can you help shape research into the experiences of partners affected by gynaecological cancer?

By Matthew McKenzie – Chair of Cancer Carer forum

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

Have You Supported Someone Through Womb Cancer? Your Experience Could Help Improve Care

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:

Email: ruby.neish.25@ucl.ac.uk

On a side note, remember I also run the Cancer Caregiver group the last wednesday of the month, see poster below.

World Cancer Day 2026: Standing with Unpaid Cancer Caregivers

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 2026 comes 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

Macmillan Cancer Support has also shared its perspective on the Plan, welcoming the focus on person-centred care while continuing to advocate for fairer cancer experiences and stronger support for everyone affected. Find out more here: https://www.macmillan.org.uk/about-us/news-and-media/news-releases/a-new-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.

Together, we are #UnitedByUnique.

National cancer caregiver forum – October 2024 update

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

Caring for someone with cancer by Matthew McKenzie

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.

Macmillan Cancer support newsletter for August

London Cancer carer forum – July 2024

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

Help improve cancer services at Imperial College Healthcare NHS Trust

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

See poster for details.

London cancer caregiver forum – April 2024 update

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.

https://csnat.org

Cancer Experience of Care Recognition Event – 2024

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”