Page last updated at 07:48 GMT, Tuesday, 4 November 2008

'My husband couldn't buy drugs'

By Jane Dreaper
BBC News health correspondent

Robert Mayer
Robert Mayer died earlier this year
Susan Kiernan admits she used to have a more hardline view on the affordability of drugs.

Then her beloved husband, Robert Mayer, was diagnosed with advanced pancreatic cancer.

He was aged just 48, and their three children were still growing up.

The drugs that could make a difference in prolonging his life were not funded by the NHS.

People are currently excluded from the NHS if they pay for treatment not available on the health service, but practice varies from place to place.

It was an especially difficult issue for Susan and her husband, as both were doctors who had devoted their working lives to the health service.

I probably would have thought: 'Well, that's a lot of money to spend, to give somebody a matter of months - is that justifiable?'
Susan Kiernan

She said: "Professionally I havenít had to deal with patients in a similar situation, by supporting them in appeals to the Primary Care Trust.

"But had I been in that position, I think I might have seen it in more black and white terms.

"I probably would have thought: 'Well, that's a lot of money to spend, to give somebody a matter of months - is that justifiable?'

"But when you are actually in that position, every single second is amplified.

"The value of time changes completely.

"I used to sit listening to Robert, talking to the kids around the kitchen table.

"I used to cherish it so much. It was so valuable. A few minutes can take on massive significance."

Value of life

Robert Mayer wrote an article in the British Medical Journal, titled "Because Iím worth it", in which he pondered the value of his life.

Dr Mayer and his family
Dr Mayer with his sons

He viewed the rules on top-ups as ludicrous, and enrolled in a drug company trial to get the treatment.

Although it cannot be quantified exactly, Susan believes the drugs gave her husband an extra nine months of life.

She said: "We were warned the side-effects could be pretty ghastly, but in fact Robert was pretty well.

"He managed to keep all his hair, which was very important to him, and he didn't lose much weight.

"To all intents and purposes, I donít think you would have noticed this was a man dying of cancer."

Strong memories

The extra time gave the family a chance to adjust to the loss that was soon to come.

Are you going to spend all your life savings or re-mortgage your house, to let your partner live six or 12 months longer?
Susan Kiernan

Robert died in March this year, 14 months after learning he had cancer.

The couple's youngest child, Angus, 14, also has strong memories of those last months.

He said: "We both shared a similar interest in music and after the diagnosis, he took me to Glastonbury Festival.

"It was a really nice thing to have done. It was a chance to forget everything and enjoy ourselves.

"I could always overhear the conversations with my mum, about the drugs and the money implications.

"It was kind of a constant presence through the household.

"But there were still nice memories of just the whole family together. We needed that."

Fears over division

Susan is now back at work as a GP in a busy north London surgery.

She shares the unease voiced by many people in the NHS, that allowing top-up payments could lead to divisive situations.

She said: "It worries me a lot that any potential slowdown of the NICE process could go unnoticed.

"And it is going to lead to some very difficult decisions for some families - especially if money is short.

"To put it bluntly, are you going to spend all your life savings or re-mortgage your house, to let your partner live six or 12 months longer?

"I think thatís not a fair position to let people be in."



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