Review: The woman who fought a hidden killer

Motor neurone disease kills 1,200 people annually. Sally Staples profiles the efforts of one woman to ease its victims' suffering

In the final months of her life, Annie Lindsell's struggle to be allowed to die with dignity became front-page news. At the end of October 1997, she won a High Court action that allowed her doctor to administer potentially lethal pain-relieving drugs to prevent her from choking to death.

Annie, a former air stewardess and cabaret performer, aged 47, had suffered for six years from an incurable and fatal muscle-wasting condition - motor neurone disease. She attended court in a wheelchair and boldly gave a press conference, despite increasing problems with her breathing.

Ultimately she died on 1 December last year without the need for drugs to alleviate any distress. But her valiant determination to raise money for research into her illness, and to champion the rights of terminally ill patients to have some control over their deaths, will not be forgotten. Her legacy lives on, thanks to the determination of her partner, Ron Hicks, her carer and cabaret colleague, Martin Seager, and her sister, Suzy Galbraith.

They have founded the Annie Lindsell Trust to provide funds for medical research projects undertaken by qualified researchers into the causes and treatment of motor neurone disease. And next Monday the Trust will be launched by releasing a CD of Annie's songs to start the fund rolling.

Film footage of Annie's life will also form part of a television documentary, Desmond Wilcox's Fighting for Dignity, to be shown next Tuesday, 24 March, on Carlton, at 10.40pm. In addition, the Trust is planning a gala concert in the summer and a commemorative ball around the anniversary of Annie's death in December.

The CD will include photographs and a comprehensive booklet about Annie's life, written by Martin Seager, who watched her struggle to perform in cabaret for fundraising events even when she could barely stand. His account of one of her last performances is a poignant tribute.

"On the evening of 17 July 1994, Annie gave one of her best and most memorable performances at an MND research benefit concert at the Bridewell Theatre in London. In a heart-stopping moment right at the end of the concert, Annie managed - against all advice - to stand up, with the aid of crutches, and sing "A Midsummer Night's Dream". The words of the song are based upon the difficult nights she spent, alone with the disease, increasingly unable to get comfortable as she became more paralysed and yet, when finally falling asleep, happily dreaming that she was still walking and dancing - an illusion, of course, shattered as soon as she awoke again.

"It was as if Puck's spell had been cast over the whole theatre - everyone willing her to succeed, wincing with her every time the effort of balancing upright impinged slightly upon her breathing - which soon afterwards was to be affected by the disease. This was the last time she ever stood up to perform, and was the last recording made of her singing."

Annie was only 41 when persistent leg cramps made her seek medical advice. Blonde, glamorous and hungry for life, she neither looked nor felt ill as she lay in her hospital bed awaiting the results of neurological tests. The consultant's words to her were chilling: "You should live every day as if it were your last. Nothing is going to make any difference."

With characteristic feistiness, Annie and her partner, Ron Hicks, determined that they would somehow prove the doctors wrong. She made many trips abroad in the search for both conventional and alternative therapies. But she also launched herself into fundraising for research into motor neurone disease, which kills 1,200 people each year.

MND destroys the nerve cells running from the brain and spinal cord which control muscle movement, and this causes progressive paralysis, leaving only the brain, eyes and ears unaffected. Sufferers may end up unable even to swallow and death can result from choking or through suffocation, when the chest muscles collapse. And it was for control over such an undignified end that Annie fought her High Court action.

Annie's battle - she always saw herself as a great fighter - was twofold. She wanted to raise the profile of the disease that had attracted cursory publicity when it killed the actor David Niven and the England football manager Don Revie. But she also learned enough about the suffering of fellow patients to decide to devote some of her energy to the campaign for voluntary euthanasia.

"How many people, if they were strapped into a wheelchair all day, often with a neck brace, unable to take themselves to the loo, unable to communicate, being fed through a tube, would be against voluntary euthanasia being available?" she asked, daring any healthy able-bodied sceptic to think again. Two years ago, she accompanied Sir Ludovic Kennedy to Westminster where, from her wheelchair, she addressed MPs and members of the House of Lords on the subject of euthanasia.

Life expectancy for those with MND is normally between two and five years. Annie survived for six, during which she offered support to the Motor Neurone Disease Association, which gives practical help and information to sufferers.

"Annie was very concerned about the research side of MND," says Martin Seager. "Almost no government money is spent on research and Annie was always anxious that money she helped raise - which amounted to more than pounds 20,000 in the first few years of her own illness - went straight to the institutions and scientists who were investigating the disease. The Trust will work in close collaboration with the MNDA and seek advice from experts in the field."

Dr Brian Dickie, director of research and development at the MNDA, says: "We are happy to collaborate in any way we can to identify the causes of the disease and search to find a cure. We are currently funding 11 research projects and six care and research centres throughout the country. That costs pounds 450,000, so we obviously welcome any financial help from the trust. The association has the infrastructure to deal with research applications, which are considered by our peer review process, and that allows us to take the advice of independent specialists."

Professor Nigel Leigh, director of King's College MND care and research centre, welcomes the prospect of more research funding but emphasises the importance of focusing resources, and the need to avoid potential wastage if research is too fragmented.

"The principle of raising money by the trust is wonderful, but it is important that such a body should work closely with the MNDA to guard against duplication in research," he says.

The CD of Annie's songs can be obtained by sending a cheque or postal order for pounds 10 - to include postage and packing - to the Annie Lindsell Trust, PO Box 231, Teddington, TWl1 8YW. Available from 23 March.

Further information on MND can be obtained from the Motor Neurone Disease Association, PO Box 246, Northampton NN1 2PR (01604-250505).