Key messages

So you’ve come to the end of this resource, and although you may find that caring for someone with MND is exhausting both physically and emotionally, you have the skills and ability to improve their quality of life.

In addition to this, it is important to always be honest with yourself and don’t be afraid to admit it if you feel out of your depth. You can always get support from a peer or colleague if you need to talk about a certain issue, and refer to the additional materials and research sections in this resource for extra reading.

Key points to remember

  • there is no cure for MND
  • MND is a rapidly progressing disease and you need to be adaptive in your care. Look for short term solutions, whilst working on the longer term strategies
  • the person with MND may understand more about the condition than you do
  • put the person at the centre of all care decisions
  • respond to each person compassionately and with dignity and respect, even if they are not your direct responsibility. This applies to the person at the end of their life, those close to them and their carers
  • check that each person’s understanding reflects what they have been told
  • establish a person’s wishes and avoid assuming a lack of capacity without careful assessment
  • advanced care planning is really important and should be discussed early on in the diagnosis
  • the NMC Code of Practice says nurses “must recognise and respond compassionately to the needs of those who are in their last few days and hours of life” (NMC, 2015)
  • it is ok to admit your lack of knowledge of MND. You will learn more from openly discussing the condition with the person and your colleagues
  • remember to involve the family and key carers in any important decisions.