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
Welcome fellow carers. Here is the brief October update from my London cancer carer forum. The forum is aimed at those caring for someone with cancer, we welcome to hear experiences, connect and grow the network. The forum runs every last wednesday evening of the month.
Caring for someone should be identified and recognised, especially if you need support. Caring is part of the community and carers themselves should be part of that community.
So for our October meeting we were delighted to be joined by Anton Morgan-Thorne who is Macmillan Engagement Manager for London, Southeast and East of England.
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care.
Macmillan are developing a new strategy on engaging with the community. It is important that those caring for someone with cancer also have a say and be part of that community.
Andy talked about what Macmillan can offer those affected by cancer and how this can help cancer carers. Macmillan talked about welfare rights advisor, macmillan information centres and support that can help carers such as Holistic Needs Assessment of their loved one.
So it was great to also hear from Rachel Waddon who is Macmillan’s new communities’ manager. Rachel talked about the Macmillan London Cancer community. The LCC has been around for some years, but has not had anyone to support the community until now. Rachel is doing a survey with the London Cancer community members to get an understanding of what the members of the network would like from it so that they will co-designing it together. Rachel wants to develop a really strong foundation for the London Cancer Community to grow.
Our group will look to be part of this community to help provide a platform for carers to be heard and involved. This include feeding into policy, telling stories and helping to build a stronger foundation for carers to be included.
If you are caring for someone with cancer, feel free to check out Macmillan’s online carer forum.
Welcome to a quick update of the London cancer support and engagement forum. The group is for those caring for someone diagnoised with Cancer. Just a quick message regarding a carer. A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.
My focus on carers are those caring for someone with mental ill health or cancer. For the September group, which is run online we were joined by some new carer members. One was from NHS England giving support to the new group. We started off with a peer session as those caring for someone with cancer wanted to share their experiences. Most members who attended had loved ones recieving pallative care due to the late stages of cancer.
We then had our guest speaker who kindly engaged are carer members. The speaker was Gabrielle Brown who spoke about her paper “How pancreatic cancer impacts carers in the UK: why do we know so little?”.
Gabrielle Brown is the Staff Nurse, Guy’s and St Thomas’ NHS Foundation Trust.
Her paper sourced in the British Journal of Community Nursing . Jun 2023 looks at how Pancreatic cancer is a disease with poor life expectancy and high symptom burden.
The experiences of the spouses, family and friends who care for this group is poorly understood, especially during palliative care and within the UK.
The Aim of the paper is to highlight the current gaps within research and provide some insight into the challenges faced by carers assisting those living with pancreatic cancer, and how community nurses can support this group.
Gabrielle talked about the number of unpaid carers and how important they are to health and social care. She mentioned the World Health Organisation guidelines and the challenges of them being followed. There needs to be offered need assessments for both carers and patients.
Gabrielle pointed to the recent Carers UK survey which highlighted a lack of support for carers. She then mentioned the situation pallative care discharge issues and what here paper raised regarding carer guilt and grief, especially if their loved one had a short life span due to cancer.
When agressive cancer does strike, it shows the carer had a lack of time to adjust and this ends with an increased level of anxiety and depression.
The group were interested in the talk and raised several questions. This concludes a brief update of my London cancer caregiver forum.
Welcome to my first ever update of my London cancer carer forum. This carer forum is different from my other carer forums. The major difference is this forum focuses on families, friends and carers who care for those with cancer. My other 5 groups focus on those caring for someone with mental ill health.
This forum runs on the last wednesday of the month and covers the whole of London. The forums main focus tends to be hospital engagement. Cancer Alliance and cancer leads at hospitals should have a keen interest to support carers who try navigate the cancer pathway.
For August we had our peer session to hear what challenges cancer caregivers face. If those seeking to improve cancer services do not engage at grassroots level then we risk guessing what challenges people face. It is so important to network and educate each other. It is very important for carers to be empowered to network especially for a peer supportive environment. It is impossible for me to be everywhere, so with a network we can have members looking to attend cancer service engagement events. Carers should be encourage to feedback their experiences.
For our very first London cancer caregiver group we were joined by Professor Tracey Devonport from the university of wolverhampton.
Professor Tracey is from the Faculty of Education Health & Wellbeing and although she presents at my ethnic mental health carer group. She has a large focus on cancer care research. This also includes research on cancer caregivers.
For our August London Cancer caregiver group. Professor Tracy presented on “Coping Conversation’s for Cancer Carers Forum”.
Prof Tracy ran a presentation and session on coping skills for carers who often can find themselves overwhelmed when providing unpaid care.
Each member of our group fedback what challenges we face when providing unpaid care. We also gave ideas on what we use to help us cope. Tracy presented her ideas on Dyadic Coping
All in all our forum worked out ok. There is still a lot of work to do as the group looks to develop the following.
Increase a chance to feedback experience
Learn about your role from other carers
Engagement from hospital services
Develop a cancer caregiver network.
Learn about the peer environment
Engagement on university research
Increase the focus on those who care for someone with cancer
A Caring Mind 