Why shouldn’t my dad have had the right to die on his own terms?

The government must listen to the voices of people who are dying, people who are unbearably, unnecessarily suffering, and the families who suffer with them

It was June 2005 when the bottom fell out of our world. My dad, Tony Nicklinson, was on a business trip and Mum got a call from one of his colleagues to say he’d had a stroke.

He was trapped in his own body. Paralysed from the neck down and unable to speak. Blinking was to be the only way he would be able to communicate for the rest of his life. Through this he made one thing clear quite quickly – his desire to die.

For the five years Dad was at home, every day was more or less the same for him. He would wake up, be washed by a carer, put in his wheelchair, be fed something mushy, spend time on his computer painstakingly typing with his eyes, be fed something else mushy, be moved to his armchair, watch TV, be fed something else mushy, be moved to his bed, watch more TV, have a few hours’ sleep. Repeat.

All of this was punctuated by either Mum or a carer – a stranger – attending to his toilet needs, wiping the dribble from his mouth, scratching his itches, brushing his teeth, dressing him, shaving him, stretching his limbs when his muscles seized. Dad endured about 1,500 days of this – could you?

He would cry a lot – actually, he would wail, hysterically, and it would break our hearts to listen. He told us he wished he hadn’t called the ambulance and was left to die in that hotel room.

We embarked on a gruelling legal challenge that centred on Dad’s desire to die, at home, at a time of his choosing, with the help of a doctor. We campaigned for years and on 16 June, 2012, the High Court said no.

What little life Dad had left was snuffed out and he had been handed a death sentence. Ironically, this was what he – we – had wanted, but his death was not the comfortable, pain-free one that he deserved.

It’s been over 10 years since Dad refused food and treatment in order to die on his terms. It isn’t about him anymore. I’m glad to see that Parliament is looking at this issue again in the form of an inquiry run by the Commons Health and Social Care Select Committee. But I’m scared that they’ll get distracted by too many conversations about palliative care, studies from academics and the views of MPs; they need to listen to the people and families who have been traumatised by the barbaric blanket ban on assisted dying.

According to the Office of Health Economics, even with the best care 17 people this week will die in tremendous pain in the UK. Parliament must listen to the voices of people who are dying, people who are unbearably, unnecessarily suffering, and the families who suffer with them.

In my mind, the inquiry must answer one single question: why should my dad have been forced to live a life that he described as a living nightmare? I’ve never heard a satisfactory answer to that question.