Parliamentary candidate Julian Ware-Lane supports campaign to make sure people with MND do not die without a voice
February 24, 2015 1 Comment
Parliamentary candidate Julian Ware-Lane, Southend West, has signed the MND Association’s Charter in recognition of the rights of people living with motor neurone disease (MND) and has agreed to work with the charity to ensure people living with this terminal disease do not die without a voice.
This rapidly progressive disease kills five people every die in the UK, with a third of people dying within twelve months of diagnosis. Between 80% and 95% of people living with MND will experience some communication difficulties, some losing their voice completely, before they die.
Julian Ware-Lane said, “People living with MND should not be left without a voice, with no way to communicate with loved ones and professionals at a very difficult time in their lives. We need to see a change, and I am committed to working with the MND Association to make sure people with MND get the support and equipment they need.”
The MND Association is concerned that too many people with MND are experiencing delays in getting the right support to help them communicate. In some cases people have received essential communication equipment too late, after the person has died.
Chris James, Director of External Affairs for the MND Association said: “Losing the ability to speak is one of the most distressing dimensions of MND. The help that communication aids can offer can utterly transform the last weeks and months of a person’s life. Being denied them can make that time thoroughly and needlessly wretched. That’s why our manifesto is calling for the next Government to commit to meeting the communication challenges faced by people with MND. Action must be taken to make sure people with MND don’t die without a voice.”
For further information please visit www.mndassociation.org/voice
To meet those communication challenges should really also involve faster diagnosis of this difficult to diagnose disease (and am told you can only really be certain post-mortem, so life-time “diagnosis” tends to be by elimination of other diagnoses). That can mean multiple referrals which is expensive.
We also need more support for the recently diagnosed so that they feel confident to ask for help – and aware of what help is available. Without support there will be a tendency for some to go into denial – which creates even more delay. The Motor Neuron Disease Association does a fantastic job for those who know of them and are put in contact, but I fear that some do not know of them.
(I am also torn between being worried that people with diseases like this are reliant on charities for support, and acknowledging that charity “user groups” such as the MNDA understand the issues and have a level of commitment higher than even highly committed health professionals.)