Phil Newby, a terminally ill man from Rutland, has lost his legal fight to change the law over assisted dying. However, he vows to keep fighting for the right to choose whether to end his own life as his symptoms get worse.
The prognosis means he will slowly lose the ability to do the most basic of daily tasks and he believes it will reach a point where he'll want to end his life and the suffering.
In an interview with ITV Central he said: "It's widely seen as a bad law and a cruel law. I still have a voice. Many people who have Motor Neurone Disease don't have a voice and I'd like to use that voice for the good."
"The law's been in deadlock around this law in parliament for years and I think we have come forward with a potential solution"
As things stand, family members could be prosecuted for helping someone to die - even if they're in pain or distress. A law that Mr Newby describes as "cruel".
Where does the law currently stand?
Suicide was decriminalised by the Suicide Act in 1961, however, it's still an offence in the UK to encourage or assist another person to take their own life.
Breaking the law could lead to a prison sentence of up to 14 years, but there is some discretion from the Director of Public Prosecutions over whether to prosecute or not in these cases.
Human rights campaigners have also challenged the law surrounding assisted dying. However, the Human Rights Court says that dying is nota human right. This was challenged in 2018 when to challenge the
Previous attempts to challenge the law:
The Suicide Act decriminalises suicide in the UK, however, assisted suicide remains illegal
Diane Pretty dies 2 weeks after losing a case at the Human Rights Court to legalise assisted suicide
The Human Rights Court rejects a case brought by Jane Nicklinson and Paul Lamb to change the law
Parliament votes on plans to make assisted suicide legal, but the plans fail 330 to 118 votes
Omid, a non-terminal patient loses a challenge to fight for his his right to die
Neil Conway takes his case to die with dignity to the High Court, after losing previous appeals
Mr Newby wants to take the matter out of the hands of parliament. He is calling on the court to introduce a process where a panel of top judges would listen to expert evidence and come to their own conclusions about how the law could change- A process that has recently been introduced in Canada.
However, on Tuesday (November 19) The High Court in London ruled that this is not a matter for them and should in fact be left with the politicians.
There is a feeling that a change to the law could result in some terminally ill people choosing to end their lives because they feel like a "burden" to their families. There is also a fear that some people may use a change in the law to take advantage of vulnerable people. None the less, as he battles with Motor Neurone Disease, Phil has pledged to continue battling against the current laws in place.