September 2024
Wear It Orange
You may have recently noticed the “Wear It Orange” sticker on our Facebook page banners for Inflammatory Breast Cancer Awareness Day on October 4th, 2024, and wondered what it’s all about.
As part of this year’s Breast Cancer Awareness Month, traditionally associated with the colour pink, we are inviting our members, supporters, and the public to stand out and wear orange to raise awareness of inflammatory breast cancer (IBC).
Why orange? IBC presents with a distinctive symptom known as peau d’orange, where the skin of the breast appears dimpled, resembling the texture of orange peel.
By choosing to wear orange, we celebrate our differences and bring much-needed attention to this disease.
Please support us by uploading our Facebook banner and encouraging your friends to do the same. Why not take a photo of yourself wearing something orange and upload it to your page? Don’t forget to tag us using the following hashtags:
#InflammatoryBreastCancer #IBC #TheIBCNetworkUK #wearitorange
Join us in spreading awareness of this rare and very aggressive type of breast cancer. Thanks to all those who have signed up so far. Here is the link if you would like a fundraising pack: Fundraising Pack Link. So far we have 14 events happening in October 2024.
The International Symposium on IBC
Section Author: Autumn Morris
In September, The IBC Network UK was invited to attend a one-day symposium at the Institute of Translational Medicine, University of Birmingham. Our presentation focused on Patient & Public Involvement and Engagement (PPIE) on IBC. After introducing the charity and sharing our current activities, we presented key suggestions on improving The IBC Service:
1. Correct Information - highlighting the presence of incorrect information regarding IBC and its treatment protocols in the healthcare system and the importance of ensuring that health professionals have accurate, up-to-date knowledge on IBC in improving patient care.
2. Timely Treatment, Especially in Radiotherapy with Bolus - Given the aggressive nature of IBC, we emphasised the importance of prioritising IBC patients, particularly in radiotherapy. Cases of delayed radiotherapy are increasing alarmingly, which can have serious consequences. We strongly recommended that IBC patients be prioritised, even over triple-negative breast cancer patients.
3. Second Opinions - Our feedback from members revealed that patients often encounter difficulty or resistance when requesting second opinions from their consultants. We addressed the need to make second opinions more accessible, benefitting both patients and healthcare teams.
4. Referral to The IBC Clinic - Some health trusts and medical professionals are hesitant to refer patients to The IBC Clinic, citing additional costs or cross-border issues. We believe referrals should be encouraged to ensure that patients receive specialised care.
5. UK Guidelines on IBC Treatment - There is a clear need for standardised UK guidelines on IBC treatment to ensure that all patients receive the highest level of care, regardless of location.
6. Data Collection - Thorough data collection on IBC in the UK is essential. Current statistics are outdated, making it difficult to track progress or push for improvements in care and treatment.
7. Advocacy & Support - Patients need strong advocacy, particularly when emotional support and information are required. It’s critical to ensure patients are supported compassionately, without being overwhelmed by unnecessary information.
We were also asked to present our ideas on improving communication with NHS professionals, and made the following recommendations:
1. Referring Patients to The IBC Network UK - urging GPs and Consultants to refer patients to the Charity, so we can help prepare them for meetings with their healthcare teams. In ensuring that patients are calm, informed, and equipped with the right questions, we can reduce stress and improve communication between patients and their medical providers.
2. Dedicated Email Address for Enquiries - We suggested creating a dedicated email address specifically for handling enquiries and second opinion requests related to IBC, ensuring a more streamlined process for patients seeking information or support.
3. Training for NHS Staff - We recommended further training for NHS staff, ensuring they are fully aware of IBC protocols and use clear, precise language when communicating with patients, thus avoiding confusion and improving patient experience.
We understand the significant challenges currently facing the NHS and while it is clear that these changes will take time, we believe that these suggestions are vital for improving patient care and outcomes. Thank you to our support members who shared their IBC experiences, which enriched our presentation and helped highlight the critical areas for improvement!
Volunteering - Without you, there is no us!
Section Author: Autumn Morris
A study conducted by the National Council for Voluntary Organisations reported that 91% of charities registered in the UK are run by volunteers.
The Inflammatory Breast Cancer Network UK is one such charity and we are proud to be led by a Board of Trustees and supported by an exceptional team of volunteers but now, more than ever, we are in need of volunteers. Volunteers play a crucial role in helping us achieve our charity’s mission of supporting and educating those affected by IBC, promoting and raising awareness and raising funds for research into this rare and aggressive type of breast cancer.
Currently, we have one vacancy on our Board of Trustees and several volunteer opportunities for everything from fundraising and finance to social media and website content and management.
You can see our current opportunities on our website: https://www.ibcnetworkuk.org/support-us
Alternatively, you may have a different skill set that would be of interest to us, so why not drop us a line to see what you can do to support us. Contact us at info@ibcnetworkuk.org
Fundraising
Section Author: Ashleigh Williams
We have updated our eBay store with the event t-shirts and wristbands. If you want to have a look visit https://www.ebay.co.uk/usr/theibcnetworkuk24
We are the only charity dedicated to promoting and funding UK research into inflammatory breast cancer. Since we receive no cancer research funding from within the UK, we rely heavily on public donations. If you would like to help us continue providing vital support and advancing research, please visit our website at www.ibcnetworkuk.org/donations.
Increase the value of your donation by 25% at no extra cost to you. Gift Aid allows charities such as us to reclaim tax on donations made by UK taxpayers: for every pound you donate, we can claim an additional 25p from HM Revenue & Customs, at no extra cost to you.
Thank You!
We are continuously grateful for the support we get in donations and from all of our incredible volunteers. Please keep giving us your thoughts and feedback and if you would like to get involved and volunteer for the charity please get in touch at info@ibcnetworkuk.org. There is so much we can do together to continue to raise awareness and support those with IBC while looking to fund research into this rare disease.
Board of Trustees
Autumn Morris, Chairperson Naomi John, Vice-Chair
Lucy Reynolds, Secretary Rebecca Wright, Treasurer
Richard Amos, Scientific Advisor Diana Broughton, Fundraising Manager
Ashleigh Williams, Fundraising Manager
Volunteers
Caroline Ballinger, Support Service Manager Lorna Whyte, Support Service Assistant
Sara Bonnell, Administration Assistant Jill Sturgeon, Merchandising Assistant
Liam Morris, Website Manager Rachael Honey, Website Assistant
© The Inflammatory Breast Cancer Network UK.
Registered Address: 11 Whitborn End, Malvern, Worcestershire, WR14 2XB, Office Tel: 07971406817 Email: info@ibcnetworkuk.org Website: www.ibcnetworkuk.org
The Inflammatory Breast Cancer Network UK is a registered charity in England & Wales (1177635) and Scotland (SC052303)