Category Archives: Cancer carer group

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

London Cancer caregiver forum September 2023

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.

You can find out more of Gabrielle’s paper below.

https://www.britishjournalofcommunitynursing.com/content/professional/how-pancreatic-cancer-impacts-carers-in-the-uk-why-do-we-know-so-little

London Cancer Caregiver Forum August Update

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
  • focus on mental health caring for cancer
  • influence cancer services
  • Hold to account