Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with Li-Fraumeni syndrome in Gloucester.

Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as Li-Fraumeni syndrome.

The England Rare Diseases Action Plan committed to developing a funding mechanism that incentivises centres to undertake whole body scans for individuals with rare conditions resulting in a predisposition to cancer. NHS England has now agreed to proceed with the process for identifying providers of whole-body magnetic resonance imaging scanning services for adults and children with Li-Fraumeni syndrome.

Anyone identified with Li-Fraumeni syndrome in Gloucestershire will receive counselling and support from the specialist clinical genetics service hosted at the University Hospitals Bristol and the Weston NHS Foundation Trust, with satellite clinics held in Gloucestershire. Testing and support for their families will also be offered by the Bristol service. Children identified with Li-Fraumeni are cared for by specialist paediatric teams at Bristol Children’s Hospital. Ongoing surveillance and screening for cancer, as well as opportunities to take part in research trials, are offered as appropriate.