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Cancer Alliance

Mar 09

Free ‘Cancer Demystified’ Webinars for Secondary Care Professionals

By Uncategorised

Humber, Coast and Vale Cancer Alliance is pleased to offer free Cancer Demystified webinar training for staff working in cancer services at Hull University Teaching Hospitals NHS Trust, York Teaching Hospital NHS Foundation Trust and Northern Lincolnshire and Goole NHS Foundation Trust.

Cancer Demystified training aims to provide both clinical and non-clinical colleagues with a wider understanding of cancer and the associated terminology. The sessions, which can be accessed online and last around 60 minutes, help build confidence to have potentially difficult conversations about cancer with those affected by it. Each webinar covers a different topic, from the staging and grading of cancer and how chemotherapy works, to in-depth descriptions of different cancer types and more. A link to the full list of modules can be found here.

The free sessions are available to Trust staff working in cancer services until 31st March 2022.

For more information and to sign up, email [email protected].

Mar 03
Image shows two people sat on seperate benches, looking at each other whilst in conversation. They are surrounded by trees and grass.

People living with and beyond cancer are helping to improve cancer services by completing a new NHS Quality of Life Survey.

By Personalised Care

People living with and beyond cancer across the UK are helping to improve cancer services by completing a new NHS Quality of Life Survey.

Recognising that quality of life (QoL) outcomes are as important to patients as survival, the QOL survey asks people affected by cancer how they’re doing. Answers from participants can be related to their cancer diagnosis and treatment, other illnesses, or other things happening in their life.

Since its launch in September 2020, over 180 people across Humber, Coast and Vale have completed the survey and are therefore playing their part to ensure the information collected fully represents our local population.

To highlight the importance of understanding what quality of life means to people living with and beyond cancer, NHS England has released two new videos:

Barbara Griffin, a Trustee of local cancer support group York Breast Friends, features in the video and said: “To me, quality of life means being fit and healthy and being able to do the things that I want to do, and also having family and friends around me who also have good health, both physical and mental.”

Initially, people who have been diagnosed with breast, prostate or colorectal cancer will receive the survey around 18 months after their diagnosis. People with all other cancer types will then be included from July 2021 onwards.

To find out more about the new Cancer Quality of Life survey, please click here.

Feb 09
Carolynne, leader of the Myeloma North Lincs support group. She has short white hair, is wearing glasses and smiling at the camera.

Carolynne’s story

By Personalised Care

After attending Myeloma Support Group meetings in Lincoln, Carolynne decided Scunthorpe needed a group of its own, where those affected by Myeloma and other blood cancers could chat about their experience. Here, she tells us more about herself and the group.

After attending the Lincoln SMYLLE Haematology Support Group meetings, I realised something was missing from my local community. Although the meetings in Lincoln were excellent, a more local group would mean members could talk about news from their local hospitals and services.

Carolynne, leader of the Myeloma North Lincs support group. She has short white hair, is wearing glasses and smiling at the camera.

Carolynne’s advice is to stay positive and try to enjoy every day.

I went along to a couple of Myeloma UK patient information days in Leeds, which inspired me to inform local patients about the information and help

available from the charity. Soon after, the North Lincs Myeloma support group was formed.

We are an informal, friendly group, where members can come along to exchange news and experiences, as well as offer friendship and support to one another. I take the role of passing on any news items from Myeloma UK. They supply us with lots of different booklets on living well with myeloma, help for carers, as well as news about new drugs and trials.

At the moment, we only have a handful of members, as we find it difficult to get the message out, but we welcome anyone affected by myeloma to our meetings, whether that’s patients, carers, or family members. We would also be happy to welcome anyone with other blood cancers. I find our group members are very cheerful and supportive; even funny most of the time!

Many of us are required to shield at the moment, which means we can’t meet up for the social get-togethers that we enjoyed before the coronavirus pandemic. We have to stay safe, but shielding can be frustrating, so we try to keep in touch and stay cheerful. At the moment, we have a monthly virtual meeting, which is organised by Pat Chennells, Macmillan Information Facilitator for Northern Lincolnshire and Goole NHS Foundation Trust. We also keep in touch via phone calls and WhatsApp.

Carolynne’s Myeloma experience

I was pregnant with my second child at the age of 28 when results from a routine blood test showed high levels of some proteins in my blood. Initially, the doctors suspected something was wrong with the baby, but I was then diagnosed with monoclonal gammopathy of undetermined significance (MGUS).

On average, around 1% of people with MGUS go on to develop multiple myeloma. The doctors typically estimate a person’s risk of progressing using a test that measures the amounts of certain markers in the blood.

Since 2015, I’ve been on ‘watch and wait’ as my condition has remained fairly stable. I haven’t had any treatment since receiving Velcade injections for 3 months in 2015.

I am a very content person and enjoy life with my husband and family, who have always been very supportive. I have four grandsons and I love gardening, nature, walking, and being environmentally friendly. Gardening certainly keeps me happy and positive. If you sow, tend, or plant things, you are naturally optimistic for the future!

I will be 69 this year and one message I would like to send is that Myeloma is very different for everyone. Just because you’ve received a diagnosis, it doesn’t mean the worst. Stay positive and try to enjoy every day.

Looking for a support group?

If you’re someone who has been or knows someone diagnosed with cancer and are in need of support, head to our Support Group Directory. You’ll find local groups like Carolynne’s where others like you and healthcare professionals can help.

Jan 12
Up close photo of Humber, Coast and Vale Cancer Alliance Cancer Champion badges. The badge is a white circle with a blue border, and they say 'Cancer Champion' in the middle.

Clare’s story: Being open about cancer

By Cancer Champions

I heard about the Cancer Champion training while attending another course with Macmillan and decided to take part to help raise more awareness of cancer. If you or someone you know is experiencing cancer symptoms, it’s important to deal with it as early as possible, and one of the keys to this is knowledge.

I enjoyed attending a session where everyone shared an interest in raising awareness of cancer and helping people who are affected. The session itself was interesting and well-presented and, while the trainers were friendly, they were also informative.

Since attending, I’ve spoken to a few people about the training and the importance of attending. I’ve also promoted the training on my blog, handed out leaflets about cancer, and shared awareness-raising posts on social media.

If cancer is caught early, treatment can be more successful. That’s why the training is important – it encourages people to have their symptoms checked which, in turn, promotes early diagnosis. Worrying symptoms don’t always mean it is cancer, but getting it checked can alleviate stress.

”Cancer was a forbidden word once, but we’ve got to be more open, otherwise, things are brushed under the carpet, and you can’t do that with cancer. Lots of families are affected by cancer, but being open about it can make it less scary.

ClareCancer Champion

Cancer Champions aren’t medically trained, and we don’t use medical jargon, but the training can still help you to promote awareness of cancer. We’re normal people who just want to help others either get an earlier diagnosis or have their worries alleviated sooner.

To find out more about the Cancer Champion Programme or sign up for an upcoming session, please click here.

Jan 11
Sarah, who has long brown wavy hair, wears a white t shirt and smiles at the camera while holding a latte coffee.

Sarah’s story: Attending after a diagnosis

By Cancer Champions

In late 2018, I first heard about the Cancer Champion Programme from Colette Dixon, part of the Living With and Beyond Cancer Team at St Andrews Hospice, Grimsby.

I decided to sign up for the training so I could meet fellow cancer patients, talk about cancer, and gain a deeper understanding of other cancers which were different to my own.

The session, which was held at St Andrew’s Hospice, was split over a duration of weeks. This made it more suitable for the participants, all of whom had had a cancer diagnosis, with some undergoing treatment at the time. Fatigue is a symptom that’s commonly associated with cancer treatment, so the short spells of training were conducive – participants were able to attend without the session becoming too demanding.

”While my understanding of the type of cancer I had increased with my diagnosis, the Cancer Champion Awareness Session enabled me to become more familiar with other cancers, as well as their associated warning signs.

SarahCancer Champion

Since then, friends and friends of friends have contacted me about my journey with cancer. I’ve been able to use my training to discuss early warning signs while empowering and signposting them to seek further advice from medical professionals.

I think it’s important to be aware of cancer because, as with most things, knowledge is key. If cancer is detected early, people may have a better prognosis. Prior to my diagnosis of leukaemia, I would never have thought I had cancer. Retrospectively speaking, however, the warning signs were there throughout the weeks preceding my diagnosis. Those early symptoms can be so easily dismissed. As such, awareness of cancer, in general, is imperative, as it can help save lives.

To me, being a Cancer Champion means being part of a collective. The training gave me the confidence to talk about cancer more with other people, and I’ve since furthered my involvement with cancer-related foundations. I’m thrilled to be an advocate involved in the development of new scientific medical initiatives for cancer treatments.

I’d recommend everyone take part in a Cancer Champion Awareness Session to gain an understanding of a disease that affects so many people today. In the future, that understanding could help not only the participant, but also their friends, family, and loved ones.

To find out more about the Cancer Champion Programme, please click here.

Jan 11
Jo, a research fellow at Hull York Medical School.

Jo’s story: Improving screening uptake

By Cancer Champions

I first heard about Cancer Champion training when looking at ideas for my research fellowship at Hull York Medical School.

Having recently moved to Yorkshire, I was keen to learn about cancer within the Humber, Coast and Vale region and signed up for a face-to-face session.

The training took place in December 2019 and helped me to not only understand local statistics of cancer, but also the early signs of cancer and three national screening programmes.

Jo, a research fellow at Hull York Medical School.

”I remember being surprised by the statistics shared. I knew 1 in 2 people would experience cancer in their lifetime, however, I was shocked to see how many cancers were diagnosed at a late stage.

The training influenced my decision to focus my research fellowship on improving uptake of screening across Yorkshire and ignited a passion in supporting earlier diagnoses – I feel proud to be part of a programme that is empowering people to have potentially life-saving conversations.

After someone told me they were nervous about attending their first cervical screening appointment, I was able to reassure them and reinforce the importance of attending. It’s small moments like that which could help to make a big difference to someone’s outcome.

To find out more about the Cancer Champion Programme, please click here.

Jan 11
Image of police uniform, saying 'Police Staff' on the back.

David’s story: Cancer knowledge at work

By Cancer Champions

While reading a force bulletin about a year ago, I spotted an advert for a Cancer Champion Awareness Session and decided to get involved for two reasons. Firstly, I sadly lost my mother to cancer around 20 years ago so have a personal experience of the illness. Secondly, I now work as a Crisis Negotiator, which means I sometimes speak to people in crisis because of cancer and other conditions.

The session was relevant, informative, but still informal. There was no pressure involved and it gave me an insight into how cancer can affect people in different ways.

”Gaining a better understanding of cancer has allowed me to give help, support, and advice to people who find themselves in a difficult situation. I’ve been able to show them someone who they can turn to, who understands their concerns, and can demonstrate how to deal with the issues they’re facing.

Being a Cancer Champion is about being there as a friend, a family member, a colleague. It’s important to be aware of cancer for our own welfare, too. We need to understand changes and signs in our own bodies so we can deal with them.

As someone personally and professionally affected by cancer, I’d love for our area to set the beacon for cancer awareness, so other regions can follow.

Want to find out more about how you can get involved? Click here.

Jan 11
Amanda Eastwood, a member of staff at Hull City Council, who took the training in September 2021.

Amanda’s story: Encouraging others to take part

By Cancer Champions

Cancer Champion training stood out to me as I’ve been surrounded by cancer in my personal life.

My son, sister and mum had all previously received a cancer diagnosis and in my roles as an Early Help Family Worker and Union representative, I’ve supported people through personalised care.

I took part in a virtual Cancer Champion awareness session in September 2020. Being able to access an online evening session meant I could fit the training in around my work hours. I was impressed by the training and supporting information provided after the event.

Since learning about the early signs of cancer and how to speak to people about cancer, I’ve been lucky enough to help others. A colleague of mine had mentioned their periods weren’t right and said they felt constantly tired. I encouraged them to speak to their GP and they are now receiving treatment after cancerous cells were found.

When my family members were diagnosed with cancer, my work colleagues had been extremely supportive, so when we were asked to make a pledge at the end of the Cancer Champion training, I instantly knew what mine would be.

I pledged to make sure Hull City Council staff knew about the training and were supported to take part in work hours. I wrote to the CEO and Head of HR to explain how beneficial the training had been and why having at least one Cancer Champion in different sectors of the council, would be beneficial to colleagues.

I’m passionate about supporting family, friends and colleagues to take action against cancer and the Cancer Champion training gives tips on how to spot cancer earlier and how to help improve outcomes locally. I’d recommend that everyone takes part in the training.

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