A lack of access to the recommended screening, particularly annual whole-body (WBMRI) and brain MRI, is the number one issue facing the LFS community in the UK. Currently provision is a hit and miss affair that depends on where you live more than anything else. We have been lobbying and pushing hard to make sure that everyone who has LFS can have access to the recommended surveillance protocol as outlined here by the UK Cancer Genetics Group.
We are very happy to report that after meeting with Sarah Watson and Ayesha Ali, from NHS England National Highly Specialised Commissioning, it has been confirmed that funding will be made available specifically for WBMRI for cancer predisposition within England. It means that local NHS services in England will be able to get extra funding to cover the costs (specifically, a top-up payment on top of the current NHS tariff for WBMRI). The formal process for getting this implemented is now well under way, and the aim is to have this in place by the end of Q3 this year. Furthermore, the service description and associated materials will be made available to all of the devolved nations, so the NHS in Wales, Scotland and Northern Ireland can follow suit.
This cannot happen quickly enough – not only is the lack of provision deeply upsetting for people with LFS, and against standard of care surveillance recommendations, it is also becoming a major block in the roll-out of the MILI trial.
We remain involved and in touch with the NHS specialised commissioning team working on this and will meet with them again soon – we’ll keep everybody posted on our progress.
Pan Pantziarka, Steph Phillips, Helen Hanson, Sarah Blagden
Vic
This is great news! Despite being LFS and having had cabcer, two year ago, I have never been offered a WBMRI by the NHS. Despite all my efforts.