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

https://www.mariecurie.org.uk/

Another update. I am working on my new book to strengthen the identify of those caring for someone with cancer.

The book will focus on the following.

Chapter 1: The experience of cancer caregiving
How carers may feel when they find out that someone close has been diagnosed with cancer

Chapter 2: The battle begins
What is expected of the cancer caregiver

Chapter 3: Battling for you
Avoiding being lost in the maze

Chapter 4: Getting involved through lived experience
Inspiring cancer caregivers to get involved in shaping health services

Chapter 5: Looking back
Not caring forever, so we eventually have to look back.