NHS says no to aid for dying woman

Oct 19 2007 by Robyn Skinner, The Journal

A MOTHER with terminal cancer has launched a battle to raise £25,000 to pay for drugs that could win her extra, precious years with her little girl.

Karen Gault, 43, has battled bowel cancer since her daughter, Grace, was born three years ago. But surgery and chemotherapy failed to keep the cancer at bay and now it has spread to her lymph nodes and lungs.

Her only hope of seeing Grace grow up is a £25,000 drug programme which NHS doctors are not allowed to prescribe.

Karen – a former health service administrator – and husband Paul, of Jesmond Dene Road, Jesmond, Newcastle, have appealed to the NHS for life-extending Avastin, which is given only in exceptional cases.

Avastin is a licensed NHS drug, but the National Institute for Health and Clinical Excellence (Nice) says it is not value for money. It leaves the treatment decision to local health trusts.

The £25,000 would pay for nine treatments, which Karen believes could give her up to five extra years with her family.

But as her condition deteriorates day by day, they fear the decision on their appeal will come too late.

So with time against them, Paul is tackling a 60-mile bike ride and Karen’s former NHS colleagues are holding coffee mornings to get the crucial cash together. Northumbria University engineering graduate Karen said: “I know there’s a better drug out there that will add years to my life, but I have to go outside the NHS to get it.

“That’s the hard part for me to understand. We will just have to hope that I don’t get sick while I am on it. I need time. I need to create years for Grace. Every year she will have more memories.”

Nice guidelines say individual health trusts have to make decisions case-by-case, forcing families either to wait for the local NHS verdict or pay for the drug themselves.

Ian Beaumont, campaigns director of Bowel Cancer UK, said: “There’s no consistency at all. The patients can apply to the primary care trusts, but while some give it right away, others may take months.

“We’re talking about patients who are in the late stages of the disease. If they can afford it, private funding makes sense.”

Two weeks ago, Karen and Paul applied through her oncologist at Newcastle General Hospital to Newcastle Care Trust for Avastin, which is available on prescription in the US and parts of Europe.

Paul, 48, a Gateshead Council engineer, said: “The doctors wanted to give her the treatment, but they have to follow the guidelines. After discussing it, we didn’t have a choice. We just can’t give up hope.”

Karen said: “I have two sisters who take care of Grace when things are bad. And Grace tries to take care of me by giving me lots of cuddles.”

A Newcastle Primary Care Trust spokeswoman said Avastin was given only in exceptional cases. “An application for funding for treatment can be made through the Primary Care Trust’s exceptional treatment policy. But before that we would urge patients to discuss their treatment options with their cancer consultant.”

Last year a plea by Bowel Cancer UK and Cancerbackup for UK doctors to be allowed to prescribe Avastin was rejected.

A statement by Nice clinical and public health director Peter Littlejohns said: “Our advisory committee was certainly aware that colorectal cancer is an aggressive disease and that the treatment options available are limited.

“However, the difficult job they have to do is to balance the additional therapeutic benefit offered by these new treatments against their cost.”

Avastin was not a good use of NHS resources, he said.

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Winners and losers in the postcode lottery

KAREN GAULT is not the first cancer sufferer in the North-East and Cumbria to be affected by the postcode lottery in which drug decisions are left to local NHS trusts.

The problem arises because Nice lets trusts choose which treatments to fund.

This means patients in some parts of the country have access to free drugs for cancer treatment while others must fund the drugs themselves.

These are drugs which in many cases have been clinically proven to work.

They can cost cancer sufferers thousands of pounds a month, adding another burden to family and friends.

One who the system has helped is Ken Potts, 54, who lives at Blyth in Northumberland.

Diagnosed with kidney cancer in 2003, he had a kidney removed, but 18 months later the cancer spread to his lungs.

He was treated with other cancer drugs but suffered severe side effects.

He was initially denied the “magic bullet” drug Sunitinib by Northumberland NHS Trust before health chiefs last month did a U-turn and agreed to give him the £3,000-a-month treatment.

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Nice has been forced to change its mind before

What is NICE?

The National Institute for Health and Clinical Excellence (Nice) is the body responsible for deciding which drugs should be available on the NHS.

It was set up in 1999 and designed to eliminate the postcode lottery of drug funding.

How does the system work?

The Department of Health decides which drugs Nice should look at and drugs can be recommend only after it has studied them in detail.

Among remedies Nice has examined are treatments for flu, multiple sclerosis, some cancers and hip replacements. Once Nice has recommended a treatment, NHS trusts must fund it.

How does it decide which treatments should be used?

It consults patients, medical professionals and the drugs industry before deciding. Factors taken into account include whether the treatment benefits patients and whether it is cost effective. The Health Secretary decides if its recommendations should be implemented.

Why is it controversial?

It decides whether patients can get the drugs they need on the NHS. MPs have criticised the body for not making decisions quickly enough, causing confusion when new drugs come onto the market.

What decisions have been controversial?

In 2002, Nice was criticised after ruling that the drug Glivec should be given only to a handful of patients with leukaemia. It changed its mind after protests from doctors and patients.

There is currently a campaign in the North-East for Alimta, a life-prolonging asbestos-related cancer drug to be approved by Nice.

The drug, developed in Newcastle, can extend the life of sufferers of mesothelioma, a fatal lung cancer associated with exposure to asbestos.

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How you can help

LAST month, Karen and Paul turned for help to their friends, family, colleagues and their parish – the Church of the Holy Name of Jesus, in North Jesmond Avenue, Jesmond

As well as backing Paul and 20 of his council colleagues on the sponsored bike ride – which takes place tomorrow – they are holding book exchanges, a pie and pea supper, coffee mornings and anything else they can think of to help them hit the £25,000 target.

If you can help the Gaults’ fundraising efforts, Paul can be contacted on: 0797 661-2270 or by email at: gaultpaul@hotmail.com