Patient and Public Participation
The Manchester Breast Centre supports and works closely with Patient and Public Involvement groups.
We also host patient and public engagement activities such as Open Days and events at the Oglesby Cancer Research Building, the University of Manchester and more broadly across Manchester.
Lobular Moon Shot Project
The Lobular Moon Shot Project is a volunteer organisation that was set up in 2023 by Dr Susan Michaelis to get Invasive Lobular Breast Cancer (ILC) the research funding needed, so the biology of the disease can be much better understood. This will be a vital next step to getting the specific treatment needed for ILC to improve outcomes. As well as fundraising activities, the Lobular Moon Shot Project seeks to galvanise political support to ensure vital research funding is made available by Governments, specifically for ILC.
There are pockets of research going on globally but what is needed is a major research project estimated to cost UK£20 million over 5 years. ILC has not been priortised as it should have been in the past, especially considering 1000 people a day (22 a day in the UK) are diagnosed with the disease. It now needs a Moon Shot style approach to move our understanding of the disease forward at a much greater pace.
In 2024, the Lobular Moon Shot Project partnerered with the Manchester Breast Centre (MBC) as the research organisation to achieve its aims. The MBC will work with other research institutions to advance our global knowledge of the disease and help achieve our goals. See our media release of 19 November 2024 for more details.
Lobular Breast Cancer UK
Lobular Breast Cancer UK is a volunteer-led charity that works to save more lives by unlocking the challenge that is lobular breast cancer.
Our purpose: working together we can all live well.
Our vision: Lobular breast cancer is understood comprehensively, diagnosed effectively, treated uniformly, and patients have access to support across the UK.
Our Goals:
- Advance education and understanding of lobular breast cancer by providing information for the public, clinicians, researchers, relevant charities and the media.
- Support people to become their own best advocate and get involved as patient advocates in research and campaigning
- Ensure lobular specific support routes are available to anyone facing a lobular breast cancer diagnosis
- Change UK wide policy and treatment guidelines that recognise lobular as a distinct disease
- Work with researchers and clinicians to ensure that research conducted for lobular breast cancer meets the needs of patients.
- Raise funds for research into lobular breast cancer
Met Up UK
METUPUK is a patient advocacy group aiming to turn metastatic breast cancer (MBC) into a chronic illness and support MBC patients to gain access to the best medicines to prolong and improve their quality of life. We work towards a day when MBC can be cured.
Our key objectives are:
- Raising MBC awareness and education
- Campaigning for equitable access to treatment and drugs
- Imprve patient care and treatment
One of our achievements is a red flag symptoms infographic, highlighting the five main areas where secondary breast cancer can appear. This has now been adopted by NHS England for use in their personalised care plans for primary patients.
Vocal
Vocal creates opportunities for people to find out about, and have a voice in, health research. By bringing together patients, carers, artists, researchers, scientists and others to share their views, expertise and lived experiences, we can enhance health and research for the benefit of everyone.
Based in Greater Manchester, we work locally, nationally and internationally to make a real difference.
We’re a not-for-profit organisation, hosted by Manchester University NHS Foundation Trust in partnership with The University of Manchester.
#LetsTalkLabs - in 2025, MBC Director, Sacha Howell and Fellow, Bruno Simoes participated in #LetsTalkLabs, a collaboration led by Vocal to explore laboratory-based research & the difference it makes for the community. Find out more about #LetsTalkLabs project.
Cancer & Us: Community Conversations
Between 2022 and 2023, Vocal partnered with Greater Manchester community organisations and cancer researchers on ‘Cancer & Us: Community Conversations’ to encourage more conversations about cancer.
For one of the Cancer & Us activities, Vocal and cancer researchers Michelle Harvie and Mary Pegington from the MBC and NIHR Manchester Biomedical Research Centre collaborated with Gorton-based Healthy Me Healthy Communities (HMHC) to run Cook & Chat. People from Gorton and researchers took part in cooking workshops where they learnt new recipes, shared some food and had informal conversations about cancer, prevention and research.
Find out more: Cancer & Us: exploring the link between food and cancer | Vocal (wearevocal.org)
Visit www.wearevocal.org to discover more about our work and how people are having a say in health research.
Independent Cancer Patients' Voice (ICPV)
Independent Cancer Patients' Voice (ICPV) is a patient advocate group independent of established UK cancer charities and aware of the value of medical research to both public health and to the national economy.
Our aim is to improve existing treatments for every cancer patient and develop new treatments by bringing the patients’ voice into clinical research.
We do this by:
1. Educating, supporting and mentoring patients so that they can have an equal voice with clinicians and researchers, and
2. Bringing the patients’ voice to clinicians and researchers – i.e. by being patient advocates in clinical research so that this research takes into account the patients’ (and carers, relatives etc) viewpoint to improve outcomes (cancer mortality, morbidity, quality of life) for all people affected by cancer (patients, relatives, carers).
We involve patients in clinical research, run study days and have developed, with Barts Cancer Centre, a five day course – VOICE: Science for Patient Advocates.
Patient Advocate Video Education (PAVE)
Patient Advocate Video Education (PAVE) is a series of videos highlighting the latest in metastatic breast cancer research. PAVE is unique because patient advocates living with metastatic breast cancer conduct the interviews, including one with Dr Rob Clarke from the Manchester Breast Centre.
DenseBreast-info.org
DenseBreast-info.org is an educational resource developed to provide breast density information to both patients and health care professionals.