#Distinctly Lobular
#DistinctlyLobular
#DistinctlyLobular is our campaign to ensure that Lobular Breast Cancer is recognised and treated as a distinct disease across the UK health system.
A particular focus of the campaign is to achieve change in breast treatment guidelines. These are determined by National Institute for Health and Care Excellence (NICE) in England, and usually adopted by Northern Ireland and Wales, and by Scottish Intercollegiate Guidelines Network (SIGN) in Scotland. Currently Lobular is only mentioned once in the guidelines, and that is a recommendation for a pre-surgical MRI scan to determine tumour size before surgery.
At LBCUK, we want the guidelines to recognise Lobular as a distinct disease.
The campaign involves a range of activities, including the first UK patient survey which you may have already participated in, a media campaign to increase knowledge and information about Lobular, a study to identify the research evidence available or needed to change the guidelines, meetings with MPs, and the development of new Lobular information materials for the public and health care professionals.
How to get involved
There are several ways you can get involved with driving forward the campaign.
Email your MP
Email your MP and encourage them to attend our MP Drop-in at Parliament on Wednesday 4th March.
We aim to educate MPs about Lobular and the challenges of early diagnosis. We want to ensure that they leave the session knowing:
- that Lobular needs to be recognised as a distinct disease;
- how challenges with diagnosis impact patients;
- how to encourage all GP practices in their constituency to display copies of our new, soon to be published, Lobular information leaflet.
Click here to email your MP, using our template email. We have provided examples of wording you can use.
Participate in our NIHR James Lind Alliance Priority Setting Partnership (PSP)
PSPs work to identify key research questions through a structured process involving clinicians, patients and carers. Findings from PSPs often encourage the funding of these research questions.
We will be agreeing the Top 10 priority changes for primary and secondary/metastatic Lobular breast cancer in the NICE and SIGN treatments guidelines and identifying the research gaps needed to change them.
The work will identify if the level of research data is already available to propose change to the guidance and where there are gaps in this evidence. This will help to guide future research programmes to drive forward these changes.
We are now recruiting to our PSP Steering Group and there will be opportunities to participate in forums to get involved in prioritising the guidelines changes.
Share our new Lobular information leaflet
Download our new Lobular Information Leaflet to share with your family, friends, medical team and across your social media.
We will also have hard copies of the leaflet available for display in key locations across the UK. If you are a healthcare professional or organisation wanting hard copies please email info@lobularbreastcancer.org.uk for more information.
Share our Lobular digests with your healthcare team
You can download and share them with your GP, practice nurse or breast care team:
For GPs and Primary Care Teams
Lobular Breast Cancer: Key Points for Primary CareFor Breast Surgeons, Breast Care Nurses, Oncologists & Radiologists
Lobular Breast Cancer: Key Points for Secondary CareFor Primary & Secondary Care Teams
Detection & Monitoring of Lobular Breast Cancer
Share news about the campaign
Share our #DistinctlyLobular social media posts on your own social media.
We will be posting about the campaign on Facebook, Instagram and LinkedIn using the hashtag #DistinctlyLobular.
Share your Story
Always say that you had or have Lobular Breast Cancer if you have had your own diagnosis. This helps to increase knowledge that there are different types of breast cancer.
Stories of people’s experiences are really powerful and informative. They can help people who have also had a Lobular diagnosis, inform people who have never heard of the disease, help health care professionals better understand what their patients may need and generally increase knowledge and understanding about Lobular.
If you want to share your story, watch these videos to see what others have said and how to get involved. You can also read stories, such as Georgie’s story and Lisa’s story.
Stay Updated
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Lobular Breast Cancer UK is a registered charity in England and Wales No. 1191402 Registered office: Piccadilly Business Centre, Unit C Aldow Enterprise Park, Manchester M12 6AE