24 March, 2015

The Motor Neurone Disease Association is no doubt a little stunned (but delighted) by the power of its recent social media campaign. #SelfieAgainstSilence asked supporters to take a picture with their own message under the headline ‘no more delays’ and post them on Facebook or Twitter. The aim was to prompt care minister, Norman Lamb, to put pressure on NHS England to provide communication support for people with MND.

Just 24 hours after the campaign launched, Mr Lamb had agreed to meet the Association and Madeleine Moon MP (chair of the All-Party Parliamentary Group on MND) to discuss the issue.

Wow. So why was it so effective? Firstly, the campaign had a very strong message and one that all of us could relate to – not having the ability to communicate is frightening and frustrating, and a situation that none of us would want to face. (Indeed, one of our team has a close friend whose husband died from MND. A proud Scot, his wife was able to recognise by the look in his eye when he wanted a nip of his favourite whisky (and it had to be the right brand!) but without her how would he have told the staff at his hospice?)

‘Don’t Let Me Die Without a Voice’ was powerful in its simplicity and the clarity of its aim. It also had celebrity support. Professor Stephen Hawking, a man who wouldn’t be the person he is without his communication device, brought the aim of the campaign into sharp focus for the public through an exclusive with the Daily Mail.

Another key element was the timing of the campaign. As part of the Association’s General Election campaigning there was added pressure for Mr Lamb to act and to act quickly, with less than two months to go before polling day.

The message to supporters is ongoing, to keep the issue current and the pressure on. Updates on the Association’s website encourage people to take further action. Pre-prepared summaries and templates are available to download and send to candidates to try to secure their support.

It’s a well-thought out, well-timed coordinated campaign and one that has been extremely successful. Unfortunately for people with MND Norman Lamb cannot instruct NHS England to act but he can take steps to make sure there are effective interim arrangements in place while new systems are established. But because of the Association’s skilful work, there will be many more people interested in a positive outcome from the care minister’s meeting.