Terminally Ill Adults (End of Life) Bill - Statement

As many of you will be aware, Parliament is now considering whether to pass on a Bill to make assisted dying legal in some circumstances. 

This is a subject on which many people in our community feel passionately about, and so we thought it would be useful to explain our position, and what we’re doing to make sure people with MND are being taken into account. 

We know that there are strongly held views on both sides of the debate. This is why, as the charity representing everyone affected by MND, we have long held a neutral position – neither supporting nor opposing a change to the law. 

But being neutral doesn’t mean being silent on this issue. While we do not have a view on whether the Bill should become law, we believe it’s important that if Parliament decides to make it law, then it’s vital that people with MND have the same rights as any other person. 

As drafted, the Bill states the final step of administering the necessary drugs must be taken by the person themselves. But many people with MND lose the ability to move and two-thirds experience problems swallowing.  

We worry this would risk excluding people who can’t do that because of the disabilities caused by their MND. If the law is to change, there must be clarity to ensure everyone eligible has equal access to make a choice. 

One of the key concerns expressed widely around the debate on assisted dying is that people may feel coerced or pressured into choosing an assisted death. We are very clear that the Bill must include stringent safeguards to avoid this happening.   

We’re making sure the voice of people with MND is heard as the Bill is considered by Parliament. We have spent the last few months raising these issues with MPs and have submitted evidence to the committee stage of the Bill (where it is examined in more detail) and will continue to meet with MPs to discuss our concerns.  

Regardless of whether the Bill becomes law, it’s vital that people with MND have the same rights as everyone else. And whatever happens, there is clearly a need to improve end-of-life care.  

The current level of care we’re able to provide as a country, including people with MND, is not good enough, and if assisted dying was made legal, we do not want to be in a position where people choose this option because they feel their inability to access the end of life care they need means they don’t have any other choice. 

To that end, we’re pleased to be supporting the work of the Palliative and End of Life Care Commission. It has been set up to identify and address the barriers that limit people’s access to high-quality care at the end of life. We have been meeting with its organisers and will be submitting written evidence to be considered by the Commission. 

We know these issues are of paramount importance to everyone affected by MND and will continue to update the community as our work on the Bill progresses.