What do we want?
BRCA1/2 gene mutations were discovered 21 years ago. The NHS is now making headway in offering BRCA1/2 gene testing to women newly diagnosed with ovarian cancer, and their family members.
However, over the next few years there will be an increasing number of second, third and fourth generation families carrying a mutation, many of whom may not know their family has been affected.
We want all families with a BRCA1/2 gene mutation to have a clear and easy to use care pathway.
This should include not only testing, but relevant advice and guidance. We want the NHS to find a mechanism to reach out to individuals who may be unaware of their BRCA status, in order to maximise cancer prevention opportunities.
We want BRCA affected families to have thorough information, advice and guidance on cancer risk reduction and prevention so that they can be empowered to make the best decision for themselves.
We want this information pathway to be available across the UK, not just in selected nations. The advice should include:
- The right to know/not know BRCA status
- The impact of other family members’ decision to know, or not
- The age to tell/test children
- Risk of cancer relating to individuals’ BRCA status and age
- Different options for preventative surgery and the impact on risk
- Effectiveness of ongoing cancer monitoring
- Risk/benefits of contraceptive pill
- Options for IVF and embryo screening
We want the NHS to demonstrate its commitment to delivering on its ambitions for cancer prevention.
This means active monitoring of the take up of BRCA1/2 testing across the country, via an audit of Genetics Centres, and quickly identifying and remedying any barriers to BRCA1/2 testing. Data on uptake will also help the NHS to identify demand and plan for the future.
What will we do?
- We will develop and provide patient guide materials to help family members’ access existing genetic services and cancer prevention options.
- We will lobby the government, and the devolved assemblies and parliaments, to deliver a life-saving cancer prevention strategy across the UK as a whole.
- We will monitor international advice and protocols through our extensive global connections from supporting international forums.
- We will monitor the roll out of the current NHS England commissioning policy to ensure consistent and high quality services are available to all BRCA families in England.
- We will help women understand their BRCA risk through our online risk tool.
Do you have any questions about BRCA gene mutations? Would you like to share your BRCA story or offer feedback on our BRCA hub? We want to hear from you! Please email Ross@ovarian.org.uk