“My Dad shouldn’t die without a voice”. These are the words on the poster that I pass every day on my tube journey into work. Lots of Londoners will have noticed it in recent months – it features a father, Mark Samsom, and his daughter. Mark has Motor Neurone Disease (MND), a progressive disease that causes increasing loss of mobility and difficulties with speech, swallowing and breathing.
I first became aware of MND when one of my neighbours Gareth, a Dad with three young children, was diagnosed with the disease in 2010. I’ll admit, I didn’t know a great deal about MND. But I know Gareth found the Motor Neurone Disease Association (MNDA) charity incredibly supportive and vital in helping him and his family through difficult and challenging times. He was central in helping our local charity, Furzedown Annual Charity Events (FACE) raise the funds to help MND South London provide grants and equipment to support other families living with MND. Sadly, Gareth passed away in March 2012, and is still much missed.
So when my local branch, MND South London, got in touch and asked to meet with me, I was interested to learn more. As a busy MP, I have a lot of meetings. But this one with Sarah Tucker, the MND South London Chair, and Evelyn Hayward, a volunteer, was one I’ll always remember. We sat out on the Terrace here in Westminster and spoke for an hour, both about our personal experiences, and about the work of MND.
I learnt that few conditions are as devastating as MND. It is rapidly progressive in the majority of cases. People with MND will, in different successions and combinations, lose the ability to speak, swallow and use their limbs. More often than not, the individual will remain mentally alert as they become trapped within a weakening body. The disease is always fatal – with half of people with the disease dying within 14 months of diagnosis. There is no cure.
The work MNDA do is hugely inspirational. They are the only national organisation supporting people affected by MND in the UK, with approximately 90 volunteer led branches and 3,000 volunteers. Their vision is of a world free from MND. Until that time they aim to do everything they can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity. When asked if I would be interested in becoming a Patron for the organisation, I was delighted to accept.
Since then I’ve learnt a lot about the disease. I’ve attended meetings, and heard from inspirational speakers such as Professor Brian Dickie, Director of Research Development at MNDA. I’ve watched films like I Am Breathing – which follows the story of Neil Platt, who within a year from diagnosis goes from being a healthy 30-something British bloke to becoming completely paralysed from the neck down. And I’ve read stories from people like Gordon Aikman, Director of Research for the pro-UK Better Together campaign – whose recent article in the Scotsman I can’t recommend highly enough.
So when I see what a difference the #MNDIceBucketChallenge has made, both here and in the US, I welcome it. There are approximately 5,000 people living with MND in the UK, and the #IceBucketChallenge is doing great work to increase public awareness and understanding of the disease. I know from experience how hard it is for those with MND, those like Sam, Neil and Gordon to consistently explain the diagnosis of MND to everyone they meet, including healthcare professionals. Raising awareness helps to address this. Let’s let MND have its moment in the spotlight.
It was only a matter of time before lo and behold, I received my own nomination. And I was proud to donate to the charity before standing outside Tooting Broadway tube in my constituency, in the drizzling rain, and have Evelyn throw a bucket of iced water over me. I like to think that somewhere, my friend Gareth would have been laughing.
Sadiq Khan is the MP for Tooting and a Patron of MND South London. You can view his #MNDIceBucketChallenge here, and to donate, please text ICED55 £5 to 70070.