Tag Archives: 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

Research study-treatment for sleep problems in breast cancer patients

Hello fellow unpaid carers. A new blog post from carer activist Matthew McKenzie. I am promoting new research into treatments for sleep problems with breast cancer patients.

Sommer Agnew from Strathclyde University is researching on sleep problems in breast cancer patients, a very common issue in this population. They are currently conducting a study to investigate whether supporting breast cancer patients to improve their sleep could help them to take their hormone therapy medication (e.g. Tamoxifen, Letrozole), as many struggle to take hormone therapy medication due to side effects like this. 

The research is offering a remote, evidence-based intervention called cognitive behavioural therapy for insomnia, which is the recommended treatment for sleep problems. She is looking to recruit people who struggle with their sleep, are prescribed hormone therapy as breast cancer treatment, and who sometimes find it difficult to take their medication as prescribed (e.g., feeling the need to take a break from their medication, or forgetting to take medication sometimes).    

 Anyone who may be interested can contact Sommer directly through email (sommer.agnew.2019@uni.strath.ac.uk), the study Twitter (@SleepinBCStudy) or leave an email address through the following link if they would prefer for me to contact them:  

https://hass.eu.qualtrics.com/jfe/form/SV_3kEKYWdi7BIAX2u

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

Community Design Leads – Royal Marsden Partners Cancer Alliance

Another post from carer activist Matthew McKenzie. This blog is aimed at those caring for someone with cancer for the South West of London.

Exciting news!

If you are interested in future south west London lay representative roles.

Community Design Leads will help Royal Marsden Partners cancer alliance design future south west London lay representative roles for various cancer meetings. 

They are looking for people who live in Richmond, Wandsworth, Merton, Kingston, Croydon and Sutton. 

You will need to be able to attend: 

  • Three 1.5 hour meetings – these will be online on Microsoft Teams on the following dates:
    • Thursday 14th September 1.45pm – 3.15pm, South West London Cancer Board
    • Thursday 12th October 3.30pm – 5pm, Clinical and Operational Board
    • Thursday 19th October 10.00-11.00am, Executive Board Meeting
  • Join a pre-meet for one hour before each meeting – to help you prepare
  • Join a follow up meeting for one hour after each meeting.

As a thank you for your time you will receive a £150 voucher.

Why they want to co-design these roles with you:

By working with local people to design these new lay member roles they can make sure they work well, that lay reps are supported, that they are able to contribute to the meetings effectively and make a difference.

You:

You don’t have to have had significant experience of using the NHS or being involved in formal board meetings to undertake this work.  This is important that carers are included to shape services.

This is a great opportunity to:

  • share your experiences of the meetings,
  • make a difference and help us improve how we hear from local people, acting as lay members,  in these meetings
  • help us understand what matters to people and our communities
  • enhance cancer related services for people across south west London. 

To find out more about the role please contact Kath Malhotra for further information:  07801216768

If you are interested in the role please download and complete the form below and send to rmpartners.admin@nhs.net

Deadlines for applications: 30th August

Informal interviews will take place virtually on Wednesday 6th September.

Cancer Survivors Day – Guy’s Cancer Centre

Welcome to another blog by carer activist and author Matthew McKenzie. I raise awareness of mental health carers and those caring for someone affected by Cancer. With my focus on cancer awareness, I paid a visit to guy’s cancer centre. On Sunday 25th of June they put on a lovely event “Cancer Survivors Day – A celebration of Hope”.

There are currently 3 million people living with cancer in the UK. With such an event there is always hope to battle and survive cancer. The event focused not only on the importance of hope, but also to acknowledge the clinical and research skills that is offered to the community.

The event was supported by Guys Cancer centre, Kings College London, Kings Health Partners, South East London Cancer Alliance and Guy’s Cancer Charity.

However on such a hot day, what things did I see at the event?

A fair amount of my time I was chatting to stall holders about what they were presenting. One of the most important stalls was the Cancer Care Map Stall.

Cancer Care Map is a simple, online resource that aims to help you find cancer support services in your local area wherever you are in the UK. Cancer Care Map is run by The Richard Dimbleby Cancer Fund charity.

So why is that stall important for me? Two reasons to be honest. I am known for running carer groups, plus I network with unpaid carers a lot. With my links to health and social care services, it is about time I started a cancer carer group. I have always wondered what happens to those caring for someone with cancer. Where do hospitals send them? Are carer centres focused on cancer carers?

With Cancer Care Map, I can advertise my group although I still would need support of the hospitals. It is important carers are given a voice and they should not be forgotten. The other reason is Cancer Care Map team will provide resources for my carer information stall.

I also visited a few other other stalls, but here is a small list of the ones I visited.

Speech and Language stall
Physiotherapy stall
Tree of Hope
Cancer Research UK
Dietitians
Occupational Therapy stall

At the start of the event, we were given an opening speech by David Cheeseman who is director of strategy at Royal Free Charity. Plus an opening speech from Anne Rigg who is consultant medical oncologist and medical director for Cancer & Surgery.

After the inspirational talk, it was on the the fashion show. I was inspired by the models energy and creativity.

The audience certainly enjoyed the show and it was a great turnout.

After speaking to more stall holders, I bumped into Jannike Nordlund who is the Patient Involvement Lead and Cancer Improvement Manager South East London Cancer Alliance. There will be some good focus for carers so watch this space. I still need to chat to the 3 other London cancer alliance leads, but that will take time.

Eventually I came back to the main stage to listen to the string Orchestra, which I found relaxing.

All in all, I really enjoyed the event and felt the message so important for those living with cancer and beyond. We need to celebrate the importance of hope, there is always a chance and everyone plays a part.

Thanks for reading.

Caring for someone with cancer

Caring for someone diagnosed with Cancer? It can be a daunting and overwhelming experience when you suddenly fall into the role of a cancer carer. It is like nothing you could have prepared for, but when someone tells you they have been diagnosed then you are hit by a range of emotions.

You want to react out of desperation, but guilt stops you because you feel you cant compare what the cancer patient is going through. It is important you find out as much information and support as possible. Not just for the person you are caring for, but also for yourself. As mentioned before, emotions a carer can go through can be a rollarcoster ride. Its like you are in a constant state of alert for when things will improve or either ……. become worse.

If you are supporting someone with cancer. Certainly ask around for emotional support. This could be through MacMillan, through your GP or at the local carers centre. Carers should not be forgotten due to the role they play. Carers are part of the team and can make a big difference when someone is coping with Cancer.

You might also want to try find information on extra support at home, so it is important you speak to hospital services or social support. Of course these things take time and there is no magic wand to navigate a complex care system under pressure.

Embed from Getty Images

With the above challenges, it helps to join a carers group, preferably a group that also has those caring for someone with cancer. This is where you can learn from others. You can feel you are connected, find coping techniques, learn about services and developing a plan for the future. Avoid coping in isolation since information can make it easier for your role.

You might also need to advocate and communicate between the patient and the health care team. It can be a tricky role since not all cancers are the same, so it helps to learn as much as you can. Never be afraid to ask important questions.

If you are in the London area, I am starting a new group aimed at cancer carers. You can find out more about the group

From my carer forum page link below and then click on the forum name,

Carer forums

In the meantime below are links that could be useful for finding support.

Brain Tumour Support – http://www.braintumoursupport.co.uk
Cancer Support UK – http://www.cancersupportuk.org
Cancer Research UK – http://www.cancerresearchuk.org
Carers Trust – http://www.carers.org/
Carers UK – http://www.carersuk.org/
Charity Choice – http://www.charitychoice.co.uk
Macmillan – http://www.macmillan.org.uk
Marie Curie – http://www.mariecurie.org.uk
NHS – http://www.nhs.uk/conditions/cancer/

Bowel Cancer Awareness Month 2023

Welcome fellow carers. My name is Matthew Mckenzie and I campaign regarding unpaid carers. Most of my time I focus on those caring for someone with mental illness. However this blog is a little different, well ok a lot more different. Before I continue, feel free to watch the video version of my awareness blog

I am still focusing on unpaid carers, but more on those who care for someone with cancer. Why is that you ask? Well I run a carer’s stall at some hospitals. Those visiting someone using those hospitals drop by that stall and I often get those who care for someone with cancer. Yes, a lot do visit requesting information or just wanting to be heard.

Did you know that April is Bowel Cancer Awareness Month?

Unfortunately Someone dies of bowel cancer every 30 minutes in the UK. So raising awareness of Bowel cancer is incredibly important.

Bowel cancer awareness month is an opportunity to highlight the symptoms of bowel cancer and encourage people to get tested.

In fact this type of cancer is one of the most common cancers in the UK. It is the UK’s second biggest killer from cancers and most likely to be diagnosed in people over 60.

Some of the common symptoms of bowel cancer include:

  • Bleeding from the bottom and blood in poo
  • Being easily fatigued with no obvious reason or cause
  • Pain or a lump in the tummy
  • Persistent and unexplained change in bowel habit
  • Sudden and unexplained weight loss

With these symptoms it is so important to get screened or tested for bowl cancer. This is especially important for those from ethnic groups. There is no shame being tested or talking about it.

If you are caring for someone with cancer, it can be understandable that talking about this can be difficult. Carers of those with cancer are suddenly thrown into a world of advocating, feeling guilt and stressed at what the future holds. It is important health professionals identify and listen to these types of carers.

How can we reduce the onset of Bowl cancer?

  • Eat less red meat and avoid processed meat
  • Eat more wholegrains, pulses, vegetables and fruit
  • Be a healthy body weight
  • Be more physically active
  • Drink less alcohol
  • Stop smoking.

I hope this blog has raised much needed awareness. I certainly will be covering more on those who care for someone with cancer to continue raising awareness.