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:
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.
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.
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.
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,
A Caring Mind 