What is the alternative to offering expensive drugs which do not prevent but only delay the onset of deterioration and the more controversial route of actual euthanasia?
The third option is and always was – or should have been and should be – adequate and sufficient and effective palliative care. Adequate and sufficient effective palliative care should always include the delivery of all and any such means as may alleviate or forestall a condition or affliction.
Those who pull the financial purse-strings in the NHS (National-socialist Health Service) have other considerations, however. They are particularly persuaded in their decision-making by the DOH CQUIN financial inducements to favour introduction and implementation of LCP and get patients onto the Pathway.
The prospect of an organ harvest through Living Will directives must not be far from mind, also.
Doctors are not always right. Miracles can and do happen. Professor Stephen Hawking was diagnosed with Motor Neurone Disease in his 20s; was told he would not live to see 30! He is considered one of the most prominent and brilliant scientists of this era. Should Hawking have accepted the death-induction options of LCP or euthanasia had they been made available to him at the time? The man was more determined, more resilient; he is an inspiration to us all.
There are many such people, possessing the support and encouragement of their loved ones.
'Drug has prolonged my life'
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| Charlie Cowper-Johnson and his wife Ann |
The National Institute for Clinical Excellence has ruled that the motor neurone disease (MND) drug riluzole should be made available on the NHS.
MND sufferer Charlie Cowper-Johnson tells BBC News Online how taking the drug has, he believes, help slow the progress of his fatal condition, diagnosed in February last year, just weeks after his wedding.
If it keeps you alive for a fortnight longer, it would be worth it
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Charlie Cowper-Johnson
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His delivered furniture, and the problem affected his work, but he and his wife-to-be Ann put it down to a trapped nerve.
He said: "Ann thought I was a bit of a hypochondriac. But after Christmas I went to the GP."
The GP sent him to a specialist, who recommended hospital tests immediately, but as it was just weeks before the wedding, the specialist told him to enjoy his wedding and honeymoon and come back for tests on his return.
Mr Cowper-Johnson said: "I wasn't too worried because I thought it was a trapped nerve, but it was in the back of my mind that it could be Parkinson's or Motor Neurone Disease (MND).
"When I was diagnosed, it was hard to take it in at first. But when my wife came in, it dawned on me that I was going to leave her a widow.
"The news rocked the entire family. But it hasn't really hit me yet."
'One hope'
Mr Cowper-Johnson was prescribed Riluzole, but had to wait until April, the start of the next financial year before he could receive it.
"If it keeps you alive for a fortnight longer, it would be worth it."
Mrs Cowper-Johnson said they want to go.
He now has difficulty walking, especially outside.
He said his arms and fingers are "next to useless".
He also has problems balancing.
He said his condition does get him down. "To have been a fit person and to be reduced to this."
The couple both believe the drug has delayed the onset of worse symptoms so far.
Mrs Cowper-Johnson said: "I think it has slowed the progress of the disease. His left arm was bad when he was diagnosed and the right one was starting to catch up.
"But its taken a year to do that."
She said Riluzole should be available to all MND patients, and used the example of another MND patient with two small children who died 13 months after being diagnosed, without having the drug.
"For some people it is a lifeline, and their only hope."
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