After a mammoth effort of walking from Southampton to Westminster, I was delighted to see Lillia Jakeman’s family and supporters arrive in Westminster on Wednesday. Chair of the All Party Parliamentary Group on MND, Ian Byrne MP, accompanied us up Downing Street to deliver a petition to the Prime Minister calling for an end to the postcode lottery for MND patients. Earlier in the day Ian had asked a question of the Deputy PM in Prime Minister’s Questions about Lillia, calling for his support in getting the innovative new drug Tofersen available for all wit SOD1 MND. It was absolute proof that MPs from across the House can come together to campaign for something absolutely crucial for a local young woman living with this cruel disease.
Separately I am working with Hampshire colleagues to co-ordinate a formal request to the local Trust to provide the necessary treatment at Southampton. Whilst Lillia is my constituent, any MP in our region could face the same battle if a constituent of ours was diagnosed with SOD1 MND. So it is imperative we have a co-ordinated message and one which conveys the urgency. The manufacturers of Tofersen have provided the drug for free, it is just a question of it being administered and monitored properly.
The Jakeman family were accompanied by the Deputy Mayor of Romsey, so inevitably discussion did turn to the water levels in Romsey and the surrounding villages. The road closures we have seen because of surface water flooding have had a significant impact and I am conscious that a number of properties have also flooded. I appreciate the rainfall seems as if it has been exceptional, but if we are to expect warmer and wetter Winters then we really must be prepared for this sort of event. There is clearly a crucial message to make sure ditches and drains are clear. Some of that work comes down to private land owners to make sure they are carrying out essential work and I was pleased to hear from the Leader of the County Council Nick Adams-King as to some of the work he is doing to make sure that happens in some locations.
But again there have been issues with tankering by Southern Water and the impact that is having on villages up and down the Test Valley. Needless to say I have been in touch with them to impress the importance of finding better and more sustainable solutions to what are now annual issues in places like King’s Somborne, Broughton and other villages in the valley of the river. I am back in the constituency all over the weekend to see the impacts of the wind and rain, but am also spending some time with a local pest control company which I am sure will be fascinating and certainly very different to the week in Westminster.
