Nikki Kenward:
the ultimate nightmare

by Simon Caldwell

17th July 2011

Locked in from the outside world Nikki Kenward found herself confronting the ultimate nightmare. In the space of just one day she had been transformed from a businesswoman and active mother of a one-year-old boy to near total paralysis - but for the ability to wink her right eye. And if her "dark and lonely" new existence was not in itself terrifying enough she was then subjected to five months of appalling abuse at the hands of an intensive care nurse who, she says, would deliberately inflict pain as well as torment and threaten her as she lay motionless in her hospital bed. Yet she found the will to live and began to make a recovery and within two years was just about strong enough to lift a teaspoon, though she has never recovered the use of her legs.

Now, on the eve of a landmark Court of Protection case to consider an application to end the life of a woman who is incapacitated but shows signs of consciousness, Mrs Kenward is issuing a desperate plea to judges not set a precedent that would allow patients such as herself to be legally killed.

"You have to ask the question: are we going to kill someone who is aware of it?" she said. "Would you still say, 'we are going to kill you'?, because that is what it is going to come to.

"It will open those doors," she added. "I know that if this goes through people will say 'why aren't you wise enough, why don't you go too?'."

Case M comes before the Court of Protection tomorrow (Mon) and the hearing will run for 10 days. It involves an application by an elderly woman with dementia to end the life of her 53-year-old daughter who has been severely brain damaged since 2003 after she contracted encephalitis.

Unlike the 43 vegetative-state patients who have died in Britain after courts sanctioned the removal of their food and fluid, patient M is 'minimally conscious' and can respond to touch, move an arm and can put her tongue in and out.

If the application succeeds the woman will be heavily sedated before she will be starved and dehydrated to death. It is being opposed by the Official Solicitor and the NHS trust caring for her.

Although heavy reporting restrictions have been imposed on the media the unprecedented application will inevitably generate enormous interest.

It will also have huge implications for the 6,000 Britons who are so incapacitated that they can barely communicate and whose care is at present under review by the Royal College of Physicians.

For Mrs Kenward the case has stirred memories of how she arose on the morning of Mother's Day in 1990, after spending the night sneezing, only to slide off the bed unable to move.

She was rushed to hospital where she was diagnosed with Guillian Barre Syndrome, a rare but severe nervous disorder which can be treated in its early stages.

The former theatre manager was 37 years old at the time and her son, Alfie, was just two weeks past his first birthday.

"In the back of my head I was thinking 'you can't come back from this, it's too bad'," said Mrs Kenward, 58, of Aston on Clun, Shropshire.

"But I knew, whatever my feelings were, that I wanted to be here for Alfie and I didn't want to miss that.

"I knew I wanted to live and I had this tremendous desire to stay alive."

She said: "Being locked-in used every ounce of energy I had. It used every ounce of the will to live.

"I so needed people to be kind to me. If they cried over me it didn't matter because it was human. I needed people to try to find a way to communicate with me and to give me time and I needed people's love."

Most painful of all, she said, was being unable to hold her son and she stopped husband Mervyn from bringing Alfie into hospital because she thought the heartbreak would kill her.

"I knew that if I didn't stop thinking about him the pain of the separation and the fear of dying would be the end of me," she said.

She added: "What is it like being locked in? It is dark and lonely. It's like landing on another planet. You cannot imagine what it would be like.

"It is so remote from our experiences that you can't make a judgement about such people." Mrs Kenward said she fears Case M will fuel what she sees as an emerging intolerance of the seriously ill and the disabled.

Alarmingly, some people already remarked to her on a number of occasions how they would "rather be dead" than in a wheelchair like her.

The case will feed the "visceral Darwinian hatred" of the disabled among those who wish to legalise euthanasia, she said.

"Someone said to me that we are the new Jews. We are the people who it's now okay to show films about where everything is negative," Mrs Kenward said.

"But everybody is going to get old, everybody is going to be disabled," she said.

"If we don't want to value difference what differences will be acceptable in the end? Very few."