For weeks now, volunteers from every village have been putting up this year’s Christmas lights. This has demanded extra effort as safety checks on mounts are more rigorous. Even before the practical task of putting up the lights, funds are raised, permissions checked, volunteers recruited, and displays are purchase/upgrade. Firstly, thank you to everyone who has undertaken these tasks - these lights make such a transformation to the dark nights. Secondly, I’ve set up a Facebook group www.fb.com/groups/westcornwallchristmas for people to upload comments and photos of the displays across West Cornwall and on Scilly and to show our appreciation to the efforts of volunteers to make them so cheerful.
I’m privileged to chair the All Party Parliamentary Group for Brain Tumours. We met again in the past weeks to continue our work to find treatment that can lead to a cure. We heard from Plymouth neurosurgeon Peter Whitfield who was invited to give his holistic overview of the diagnosis, investigation and treatment of patients. He did and he also gave the most straightforward explanation of why and how brain cancers develop and how this understanding would aid efforts to find drugs to reverse and stop brain cancer. We then heard from a brother of a brain tumour patient about his family’s effort to access a drug called Vorasidenib produced by the pharmaceutical company Servier. In clinical trials the drug has shown promise, but it is not licensed in the UK. This is one of the most challenging aspects of brain tumours, especially cancers such as a glioblastoma, because patients don’t have time to wait - life expectancy varies but 18 months would be typical. Can you imagine how infuriating and desperate a situation is when you hear of a drug that may give more time but is not available because the ‘safety checks' and funding negotiations are not concluded. We’ve argued that unlicensed drugs that show promise should be permitted - this is the case in rare instances, but the next challenge is raising the funds for treatment. I met a patient last week who raised £250,000 for a treatment that is permitted, but not funded on the NHS. Our next step is to meet with Servier to press the company to begin the application process for supplying the UK. It is unlikely to help anyone living with a glioblastoma today but the remarkable part of chairing this parliamentary group is that patients and their families are not campaigning for themselves but to help people avoid what they are enduring. It’s unbelievably humbling.
Beware: last week my energy supplier advised me of its new charging system using an algorithm to predict annual usage. As a result, the monthly direct debit the company wants is £150 more than my typical monthly use over the past 12 months. Reasons given for the forecast include ‘5 years of weather patterns in your local area, and local weather forecasts for the next 25 days’. Check that your supplier is taking fair monthly payments - they have no right to hold onto your money.