Earlier this year, music teacher Daniel Monks made the decision to end his life after suffering for years with multiple sclerosis and Crohn’s disease. Here, his mother Frankie, 75, and father, John, 79, the Labour peer Lord Monks, share Daniel’s powerful story and explain why they support the bill to legalise assisted dying in the UK.
Daniel’s mother Frankie says:
On January 19th this year, our son Daniel celebrated his 49th birthday. We had a small gathering of friends and family, including Daniel’s daughters Jenna, 11 and Jaime, 17, at our house in West Wickham, Bromley. Our other children, Daniel’s siblings Matthew and Catherine, were also there.
Daniel in his usual cheerful way, enjoyed himself as much as he was able to. But after the guests left, he confirmed to us a decision he’d made in a conversation we’d had with him earlier.
“I’m going to do it from Monday,” he told us.
Two days later, as he promised, Daniel began to refuse food and water, effectively starving himself. Eight days after his decision, surrounded by his immediate family, he died in a hospice. I’d like to say it was a peaceful death, but he suffered. I still feel anger that my son wasn’t allowed to have the choice to die at a time of his choosing or be well enough to go to Dignitas in Switzerland. It seems cruel that human beings have to suffer like this.
Daniel was our hero. He was always funny and cheerful as a child, but a bit of a dreamer. His teachers used to say he spent a lot of time looking out of the window. But he would always stick up for the underdog at school, befriending anyone who was slightly different at his South East London primary and secondary schools.
Warning signs
The first time we realised something was wrong was when he was about 14 and he couldn’t feel anything below his waist. He was referred to a specialist who thought it might be a virus. The consultant said we could pay for an MRI scan or wait for one on the NHS. As we couldn’t afford a private scan, we waited. But the numbness subsided and we forgot about it.
Daniel’s health got gradually worse. It was dreadful to see his body being ravaged and his social life diminishing, but Daniel remained remarkably positive most of the time.
Daniel always said that he was glad that he didn’t know about the multiple sclerosis (MS) until after he’d finished university. He had a great time gaining his degree in music technology and had a carefree life without any diagnosis hanging over him. He went into teaching music and loved it.
He also loved being a father. He married twice and although the marriages went through rough patches, he doted on his children and was actively involved in their upbringing.
A life-changing diagnosis
Daniel was officially diagnosed with MS in 2003. I’m not sure he told us everything because he wanted life to remain ‘normal’ for as long as possible.
But eight years ago, after his second divorce, he came to live with John and I because his health was declining. He kept working for as long as possible because he wanted to provide for his young family. He was using a mobility scooter, but everyone at the school was wonderful.
We had our house adapted but his health got gradually worse. It was dreadful to see his body being ravaged and his social life diminishing, but Daniel remained remarkably positive most of the time. He was never depressed. He lived for the weekends when his children would come to visit. He loved them so much and was a fantastic father.
Daniel began to refuse food and water, effectively starving himself. Eight days after his decision, surrounded by his immediate family, he died in a hospice.
But he had always said to us, right from the beginning, that if it ever got to the point where he couldn’t feed himself or go to the toilet by himself, then he’d want to end it. He asked us to take him to Dignitas where he could end his own life at a time of his choosing and on his terms.
Risking a police investigation
It’s not something you can ever imagine doing when you have children. You always expect to go before them, but we supported him. We were prepared to risk going to prison to help him do it. It’s so wrong that family members should be put under the stress of a police investigation for simply helping their loved one, but Daniel never once changed his mind.
In the end, a bout of Covid at the end of last year proved to be the turning point. He was in hospital for weeks. He already had a catheter and stoma. Sadly, although he had registered with Dignitas in 2022, they require extensive medical and psychiatric reports and the attack of Covid came on so suddenly that it was impossible to obtain these in time.
An end to years of suffering
Which is why, just after his birthday, he took the decision to stop eating and drinking. He was already on a morphine pump and having palliative care. He was suffering and in pain and wanted to go. Even though he had the most amazing palliative care, he was determined.
Daniel said his goodbyes, telling his children, ex-wife and friends in person and sending messages to those who lived far away.
Daniel said his goodbyes, telling his children, ex-wife and friends in person and sending messages to those who lived far away. How much his children understand is hard to say. On the surface, they seem to accept it, but who knows if they have fully come to terms with it? But Dan had always been honest with them. He always said that he wouldn’t always be able to live like this.
His immediate family were all with him when he died – we slept and lived in the hospice 24/7, and we were all there to hold his hand and tell him we loved him. A few friends were able to call in to say goodbye. He even managed to enjoy some football on television as a lifelong Chelsea fan.
A brutal death
On 29th January, he died but I’ll never forget how unpleasant it was for him. Unlike assisted dying, where you take medication and then fall asleep, Daniel’s final days were very difficult. But then, finally he was out of pain. It was incredibly important to all of us to be there for him and be there for each other.
His immediate family were all with him when he died – we slept and lived in the hospice 24/7, and we were all there to hold his hand and tell him we loved him.
Today, 10 months on, we regularly visit the beautiful red rose bush planted in his memory in Honor Oak crematorium, near to where he grew up. We chat to him about what we’ve been doing and his daughters visit with us.
John and I were incredibly proud of Daniel for sharing his story in an ITV documentary a year ago and, although he has left a huge hole in our lives, we know he’d be proud of our campaign to change the law, so no one else would have to suffer how he did.
Labour peer Lord Monks, Daniel’s father, says:
We’re very pleased to see the government is making space for this bill. It’s long overdue. Although it’s not an easy decision for many people, I respect everyone’s views. But if you put yourself in Daniel’s shoes, I can’t understand how anyone could prolong the agony.
Assuming it clears in the [House of] Commons, I’ll be involved in the debates in the House of Lords, trying to win people over and I really hope Daniel’s story helps. I’ve had so many people come up to me and say what a wonderful lad he was and how persuasive his situation was. I know that he’d be cheering on this campaign.
Anyone feeling emotionally distressed can call The Samaritans for help on 116 123 or email jo@samaritans.org
A Time To Die, an award-winning TV documentary featuring Daniel, Frankie, John and other families affected by terminal illness, was aired in November 2023 and is still available to view on ITVX.
Read more about the assisted dying bill
What we know about the assisted dying bill (Yahoo News UK, 7-min read)
The countries where assisted dying is already happening (Yahoo News UK, 5-min read)
UK public more than twice as likely to support assisted dying than oppose it (Evening Standard, 3-min read)