Don’t let me Die without a Voice Campaign
I was asked by the MND Association in 2014 to be one of the twelve ‘campaign champions’ in a major push to ensure people with Motor Neurone Disease get access to communication aids they need to have quality of life. In the majority of people with MND, sadly, they will lose their ability to speak.
I used various ways to get people (including professionals) to provide evidence to the parliamentary enquiry, the first step to producing evidence. With regular cajoling the report ended with 1,692 people taking part in the Survey, a huge number, giving significant weight to our argument. I also had a meeting with the local AAC hub, to give me insight into plans, to add weight to my arguments.
We also had a Parliamentary event to launch the report, meeting first with the chair of the All Party Parliamentary Group (APPG) on MND, then going into speaker house to meet with MP’s and more, to press home why access is so important.
I am glad to say, following a question to the Prime Minister, and our ‘Selfie against Silence’ twitter campaign to a minister, meetings were arranged with NHS England, and progress was made, to ensure people with MND can have the ability to tell a family member ‘I love you’.
It was a campaign I’m very proud of, and access to communication is something I will continue to push the agenda on!
All Party Parliamentary Group (APPG) on Assistive Technology
My campaigning had been noticed, when I was asked to attend a meeting to look into forming an ‘All Party’ Parliamentary Group (APPG) on Assistive Technology (AT) in Manchester, along with other advocates for AT. At the meeting we agreed it would be a good way to ensure a focused message at Parliament, and was well worth the meeting in Manchester at MOSI!
Following the meeting, I was delighted to attend the launch of the Parliamentary Group on AT, and will work with the group as an advocate of AT. I spoke to the Chair, Seema Malhotra, introducing a fellow campaigner on AT, Sarah Ezekiel, who is a brilliant example of how AT can enrich lives and lives with MND, the reason I initially got involved in the campaign!
We also heard fantastic speeches from other members of the APPG, and Hannah Rose and her inspirational story on how AT made a difference to her life, see more about the launch and APPG here.
