MND Charter – five rights of people living with MND

The MND Charter extends to all people with MND, worldwide. These rights will ensure that people living with MND have the power to make informed decisions about their own care and needs. All people living with MND are entitled to these basic rights so that they can achieve quality of life and dignity in living and dying.

1. People with MND have the right to an early diagnosis and information. This includes:
 
  • early access to a physician who is informed about MND
  • an accurate and early diagnosis, delivered sensitively
  • timely and appropriate access to information at all stages of their condition
2. People with MND have the right to access quality care and treatments. This includes:
 
  • access to support and care services managed by a professional who has experience with MND
  • educated advice about personal care and equipment, clinical interventions, treatments, and therapies
  • access all drugs and therapies available to address the impact of MND
3. People with MND have the right to be treated as individuals and with dignity and respect. This includes:
 
  • being offered a personal care plan to specify what care and support they need
  • access to appropriate end-of-life planning tools and support in meeting their personal wishes
  • being offered support to help them make informed medical choices to meet their personal needs
  • access to appropriate communication support and aids
  • opportunities to be involved in research if they so wish
4. People with MND have the right to maximise their quality of life. This includes:
 
  • timely and appropriate access to equipment, home adaptations, wheelchairs, and suitable housing
  • timely and appropriate access to disability benefits
5. Carers of people with MND have the right to be valued, respected, listened to and well supported. This includes:
 
  • access to support and counselling, such as respite care and bereavement support
  • having their needs assessed as carers and as individuals, ensuring that their personal emotional well-being is recognised and supported
  • access to appropriate benefits and entitlements wherever possible

Add your name to show your support for the MND Charter.

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