The national LFS surveillance protocol, agreed in July 2018, has still not been rolled out nationally across the NHS. Discussions on funding are taking longer than expected, and as reported by Dr Helen Hanson at our LFS UK 2019 meeting, it is time to start putting pressure on MPs and policy makers to make the funding available to make this happen. We need to be writing letters now to urge action is taken on this. You can find out who your MP is, and how to contact them, via the UK Parliament website (https://members.parliament.uk/).
Feel free to write your own letter from scratch, or use the one below as a basis for your own. It’s good to make this personal – add in details of your own family, make it clear that this is an issue that is of major importance to you and yours. And please let us know if you get any responses!
Dear <MP>
I am writing to you about a health issue that is of major concern to myself and my family. I/we have Li Fraumeni Syndrome (LFS), an inherited condition that predisposes sufferers to a very high risk of one or more cancers. LFS is a very rare condition affecting about 1 in 5,000 individuals. People with LFS have a lifetime cancer risk of over 90%, one of the highest of any genetic condition. LFS is characterised by early onset breast cancers, rare sarcomas and brain tumours in children. There is no cure or treatment for LFS aside from preventative double mastectomy in women, the cancers are very difficult to treat and are associated with poor survival often due to late diagnosis.
The only known effective intervention (aside from preventative double mastectomy) is early detection of cancers by whole body MRI and other scanning. This is now recommended as the best standard of care by the UK Cancer Genetics Group so that cancers can be detected early and while they are still treatable. This is based on clinical trials in different countries, including the UK, which showed better survival for people with LFS who receive a comprehensive surveillance protocol. In July 2018 a consensus meeting of cancer geneticists, oncologists and patient representatives agreed such a protocol for the NHS. Such a screening program can save lives, reduce the need for people to have multiple rounds of treatment and also save the NHS money as the costs of cancer treatments are very high. However, NHS funding for such a surveillance protocol is not currently available, meaning that protocol is not being rolled out nationally.
If you would like more information on LFS and the surveillance please look at the recommendation from the UK experts:
https://www.ukcgg.org/media/11033/tp53-consensus-recommendations_-v11-17032019.pdf
This surveillance protocol is extremely important to our family – it is the only clinical program that has been shown to improve survival for people with LFS. It is essential for my family. We urgently need your support so that NHS funding is approved. Please raise this in parliament, with the Department of Health and whatever other avenues are open to you to help us receive the treatment that we deserve.
Yours Sincerely,