Firstly I would like to thank everyone for their responses to our little TV appearance yesterday. All your comments are greatly received and really help to spur us on in our campaign of raising awareness.
On the subject of assisted dying, and for fear of our agenda being lost in the clamour of recent press, I thought I would like to give you all my thoughts on the issue so that we may then get back to raising awareness of MND and money towards further research.
I believe that current legislation does not work as the topic is so subjective. I suggest the reason no charges are brought is because it is such an emotive issue and as such potentially political suicide for the government. In the case of assisted dying, the courts ruling that “it is not in the public interest to prosecute” indicates that in fact it is not in their own interest to do so.
Likewise the law lords fail to define the scope and implications of their laws when directly asked as in the case of Debbie Purdy. Debate on the issue is welcome. My concern would be the qualification of the participants.
The issues involved in concluding the debate are so complex only because we are all so complex. I doubt that a formal solution will ever be reached that satisfies everyone. I believe that in the same way we make our own decisions in life so we should be allowed to in death.
Never forget: AWARENESS + FUNDING + RESEARCH = CURE
With your help, MND sufferers in the future will not be faced with this terrible choice.
Neil felt he had to say something about assisted dying as it was very much in the news at this time. Two days before this post, Sky Real Lives channel had broadcast a documentary called ‘Right To Die?’. It followed Professor Craig Ewart and his wife Mary on their journey to Dignitas in Switzerland where he had chosen to take life-ending drugs and switch off his ventilator. The final four days of his life were documented, including the moment he died. He too had been living in Harrogate (previously America, where his family remained), he had motor neurone disease, and all the images of him had the positive pressure ventilation mask, just like Neil. The similarities were there, and the media circus surrounding the broadcast of the documentary had led to questions in the House of Commons.
We didn’t watch the documentary but I do remember seeing clips from it on several news programmes. The bulk of the media wanted to concentrate on the created controversy about whether the moment of death should be shown on television. We felt saddened that the documentary was making a point about death choices but the attitude emerging from the media was sensationalism, egotistically pointing inward toward debate about ethics in the television industry.
Watching this and being so close in situation, we felt that this was such an insult to the couple’s bravery in their final moments together. I remember watching his wife Mary being interviewed, she was very calm and articulate as she answered questions about her husband’s choices.
My husband wanted to make his position clear in this post, so that I wouldn’t have to answer any questions for him in the future and I thank him for that still.
Our only reason for being so public with our story was to raise awareness of MND in the hope for more research funding. We had no other agenda. – Louise (2013)
December 12, 2008 at 10:37 pm
Iwas very moved to see your story on tv last night ,as well as shocked.Motor Neurone is a big part of my life as it is hereditory in my husbands family….last year his cousin passed away but he also lost his mum and auntie to this disease.We traced his family history and there have been lots of unexplained deaths over the years and we think these were also motor neurone.
We are now part of a registered charity “paulsworld”, we fund raise to provide mobility for people within the west yorkshire area as i am sure you are aware sometimes the red tape is very hard to get through!!
We are all friends or family so every penny we raise goes straight into our charity.
If we can be of any help at all please get in touch ,we have 2 addapted mini buses that we can loan out ,i do not know if this is something that is already available to you but we are here if you think it is something that could help.
my own e-mail is email@example.com if you would like to get in touch or have a look at our web site http://www.paulsworld.org.uk
regards julie barr