FAQs about RIGHT TO THRIVE
Why does the Right to Thrive matter?
Motor Neurone Disease (MND) is the cruellest of all diseases. It is incurable, untreatable, and can affect anyone. You have a 1-in-300 chance of getting it in your lifetime. Eventually you can move only your eyes. Unable to speak, you are almost completely Locked-In – but your brain often remains largely unaffected and fully active throughout. Without life-support, you will probably die within two years of diagnosis.
Most people with MND believe their only option is to accept that this is their lot.
What has changed?
A growing band of inspiring pioneers with MND, spurred on by the realisation that cutting-edge Hi-Tech is set to revolutionise extreme disability, refuse to accept the established version of reality. Instead, their Message of Hope is that anyone with MND can these days claim the Right to Thrive: They choose not merely to try to stay alive for as long as it takes until there is a cure – they choose to THRIVE.
What does it need other than access to Hi-Tech?
To survive with MND long-term, you typically need an operation called a Tracheostomy that lets a portable device breathe for you, as well as a Cough-Assist machine to clears your lungs of phlegm. Currently, decisions on whether these options are made available to you if you have MND are made locally not nationally. The most recent data suggest that less than 1% of people with MND in the UK receive this life-saving combination; in Japan it is a third of people with MND.
What is the key message?
Cutting-edge Hi-Tech such as robotics, own-voice speech synthesis and Virtual Reality offers new hope for everybody with MND. But in order to benefit, everyone deserves the same right of access to the life-sustaining Cough Assist and Tracheostomy needed to keep them alive. That way, each person with MND gets the same Right to Thrive, if that is the choice they want.
But some are being told they must die instead – because of where they live.
What help is needed?
This band of pioneers needs support for their message of hope, and help in abolishing the existing cruel postcode lottery.
What must be achieved?
A significant change in attitudes to what a diagnosis of MND means today.
- Make lots of noise
- Create positive media coverage
- Establish links with people living with MND in other countries
- Share the message of hope
- Push for a revision to NICE guidelines
- Grow the band of people with MND who choose ‘To be Alive and to Thrive’
What can you do now?
If you live in the UK, please write to your Member of Parliament and ask them to contact and support Kevin Foster (MP for Torbay) who is championing the Right to Thrive campaign at Westminster, and also ask your MP to raise the issue with Steve Brine MP, the Minister responsible for major diseases.
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