‘This is the most chilling thing I have ever heard’
SPINAL patient Sian Vasey said the BMA proposals were ‘the most chilling thing I have ever heard’ yesterday.
Miss Vasey, who has spinal muscular atrophy, said: ‘If I reach the point where I can’t eat, drink or talk, then I am in trouble.
‘It is already the case that I can’t feed myself. If the talk goes I would have to rely on somebody to speak for me. It’s a nightmare.
‘I worry about what will happen if I have to go into hospital. Often people are admitted to hospital unable to speak or move, but they get better.
‘Under these rules many will not have a chance to get better.’
Miss Vasey’s condition means that she has never been able to walk and that she needs carers to provide routine help, including assistance with eating and drinking.
Spinal muscular atrophy leaves patients with weak limbs and movement problems, together with difficulties in swallowing and breathing.
The effects of the condition often get worse over time.
Miss Vasey, 62, of west London, has no close family to look after her and would rely on friends to speak for her should she be admitted to hospital.
She added: ‘I did have to go into Ealing Hospital recently with a broken arm.
‘I need someone to help me eat and drink and so I asked if someone could stay with me.
‘The hospital didn’t like that at all – they were very aggressive about it and said that I could not have someone beside me.
‘But I rely on having someone there to help me eat and drink.’
Miss Vasey, who campaigns for the disability group Not Dead Yet, is among those who would like to be able to write a living will requesting that she continue to be treated should she be admitted to hospital unable to speak for herself.
However, the only living wills that have legal force and must be followed by doctors are those requiring medics to withdraw treatment.
Under the law, hydration and nutrition given to incapacitated patients by tube counts not as food or basic care, but as medical treatment.