Mother denied cancer drugs that were promised by Labour says, 'I just want to see my sons grow up'

Mother denied cancer drugs that were promised by Labour says, 'I just want to see my sons grow up'
By Frances Hardy
Last updated at 11:35 AM on 10th April 2010
Comments (27) Add to My Stories Nikki Phelps can still recall the look of anger on her consultant’s face when he told her the NHS had refused to fund the cancer treatment drug he knew would save her life.

‘He said: “I hate to ask you this, but is there any way you can raise the money to pay for this treatment, because it’s the only one left that is clinically effective,” ’ she recalls.

Shocked though she was, Nikki remembers realising immediately that behind the consultant’s judicious choice of words, there was an unequivocal message: ‘He was saying that by denying me the money to pay for the only drug left that could help me, the NHS was consigning me to an early grave.’

Close-knit: Bill and Nikki Phelps with twins Harry and Jack (left) at home in Tranklyn, Great Buckland, Kent

Nikki is not an overtly emotional person — she has schooled herself to hide her feelings behind a mask of cheerfulness for the sake of her young family — but on hearing this from the consultant, she broke down.

‘I held my husband Bill’s hand and I sobbed. I said: “I want to see our sons grow up.” I couldn’t bear the thought of not being there to guide them, to comfort them and advise them through their tender early years.


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‘I knew without treatment I wouldn’t have a hope of seeing them grow to adulthood or marry; I’d never know what careers they’d chosen. I was being told to find the money — or face death.’

Mrs Phelps, a 37-year-old mother of two-year-old twins Jack and Harry, suffers from a rare glandular cancer. She has also become the human face of an election battle over the NHS.

As many as 20,000 Britons may have had their lives cut short because of decisions taken by the National Institute for Health and Clinical Excellence, the NHS’s rationing body, a recent study has found.

In late 2008, NICE responded to huge public criticism and announced plans to increase the number of drugs for rarer forms of cancer approved on the NHS.

Drugs for rarer cancers are often more expensive, so the organisation’s chairman Professor Sir Michael Rawlins promised to change NICE’s rules so dearer drugs could be approved.

But since then, NICE has not given full approval to a single cancer drug, despite considering 15 medications — meaning thousands of patients have missed out on lifeextending drugs.

When he unveiled his new policy, Sir Michael said: ‘People attach a special importance to extending the lives of those with mortal illnesses and we appreciate that these extra weeks and months can be very special.’

But an analysis by the Tories last week showed the new rules have in fact had little effect. Of the 15 drugs assessed since November 2008, four were rejected outright, a decision was delayed on another, and ten were only partially approved.

It has imposed complex criteria that mean in some cases drugs are approved for treatment for a specific form of cancer, but not others that a patient’s doctor may want to treat with the drug.

High price: Sutent, which is costing Nikki Phelps £100 a day to treat her cancer

So, even though NICE has approved ten drugs for some cancers, some sufferers are denied a drug that could extend their life, or even save them.

The present situation is in stark contrast to Conservative plans, under which a patient would be able to get access to any cancer drug — so long as their clinician says it can be beneficial. This would be paid for from a £200 million fund, raised from the cancelling of Labour’s rise in National Insurance contributions for employers like the NHS.

Eminent oncologist Professor David Kerr was one of the architects of Labour’s NHS reforms, but has thrown his weight behind the Tories after concluding the Government has ‘lost the plot’ on patient care.

Yesterday, he rallied behind Mrs Phelps, urging Health Secretary Andy Burnham to instruct the NHS to supply the drug, Sutent, to her immediately. He also proposed that all patients in her position, with rare cancers, get the drugs they need.

He said: ‘Yet again we are forced to witness the painful spectacle of a young mum bravely confronting her own cancer but having to beg for a new, effective drug which is being denied her by the crass bureaucracy erected by this Labour Government.

‘Despite strong support from a leading and widely respected consultant from one of our top hospitals, despite good evidence of the benefit of Sutent in the treatment of Mrs Phelps’s particular type of cancer and despite promises from the Government to improve access to innovative therapy, we have a local panel denying a mother the right to a treatment which is her only proven hope of buying her precious further time with her young family.

‘Andrew Lansley, the Shadow Health Minister, has promised to right this wrong and fund access to effective new anti-cancer treatments where the patient and their consultant see benefit.’

For now, Nikki is left in limbo. While her consultant has told her that Sutent would offer her the last real chance of prolonging her life, NICE has refused to approve the use of it, and so her primary care trust has used that as an excuse to withhold it.

So Mrs Phelps and her husband Bill, 45, who runs a cattery near Gravesend, Kent, face the prospect of selling both their £500,000 home and the business attached to it to fund the £100-a-day drug she needs to prolong her life.

Already they have eaten into their fast-diminishing savings to buy two months’ supply, at a cost of around £6,000. Mrs Phelps — a former teacher who says that even after a few weeks she is feeling the beneficial effect of taking Sutent — the economy is a false one.

When a panel of NHS ‘experts’ — none of them as qualified as Nikki’s consultant oncologist — adjudicated on her particular case, they made no allowances for her personal circumstances.

Costly: Nikki Phelps married her husband Bill nine years ago (above) but now may be forced to sell the family home (below)



‘They told me they could not take into consideration my social or family situation,’ she says. ‘But if they are not going to give the drug to a 37-year-old mother of two little boys, then who on earth will they give it to?

‘Their failure to fund it is shortsighted. If we are forced to sell our home, Bill’s livelihood goes with it. He will have to find a job — and if he fails, he’ll be forced on to benefits — and in turn there will be nobody to look after me and help care for the twins, which my husband is currently able to do because he runs our business from home.

‘Ultimately, it will cost the State far more to deny me the drug than it would to fund prescribing it to me.’

Mrs Phelps was first diagnosed with multiple endocrine neoplasia MEN1 in 2000. Her first intimation that all was not well was a duodenal ulcer which perforated. Subsequent tests showed she had a series of benign tumours on her pituitary
gland, neck and pancreas.

A year after her diagnosis, Nikki’s father Jack, from whom she had inherited the MEN1 gene, died of complications from the disease.

‘We lost Dad four days before I married Bill; it was a profound shock,’ she says — and all the more frightening for Nikki, of course, because she knew she, too, carried the gene.

However, she drew comfort from the fact the cancer is slow-growing; that her father survived for 14 years with it and that her own tumours were not malignant.

‘I had a series of operations to remove them and I made a very good recovery,’ she recalls. ‘In fact, for five or six years I led a very full and productive life. I continued to teach in the wonderful school in Gravesend where I was head of the early years department.

'I enjoyed work and remained full of energy and enthusiasm.’

In fact, she progressed so well that she and Bill sought advice from doctors about starting a family.

‘We were delighted when they said: “Yes, go ahead”.’

However Nikki failed to conceive naturally — her infertility was unexplained but may have been connected with her illness — so they attempted IVF.

‘Seven days after my fertilised eggs were implanted, I was admitted for tests and they told me: “You’re pregnant!”.

'They're telling me I'm ready for my coffin. But I'm not' ‘It was a joyous moment, but I could hardly believe it was true. So Bill bought a home testing kit — just to make sure — and that was positive too.’

Two years on, Nikki and Bill’s adorable flaxen-haired twins chatter and play with all the irrepressible, boisterous energy of any toddlers.

I arrive at breakfast time and Bill tussles them into coats as they spoon in their cornflakes before the nursery-school run.

Cats saunter in and out; bright plastic toys litter the polished wood of the floorboards. It is a bustling, happy house like many others; Nikki and Bill have ensured it is so — for the sake of their sons, who rarely have the slightest idea that their mummy is sad or ill.

Bill has built up the business from scratch. The house, set deep along winding lanes in the Kentish countryside, is an idyll.

Nikki is clearly a wonderful mother. When I ask if she should have had the twins, knowing, as she did, that she carried a genetic cancer gene which might have been inherited by her sons, she replies simply: ‘I ask myself, “Would my own mum have aborted me if she’d known at the time I might have carried the gene?”

'And I have to hope she wouldn’t because I feel I’ve lived a wonderful, worthwhile life, even if it ends tomorrow.’

The Phelpses, moreover, have taken the decision to have their boys tested for the gene sooner rather than later.

‘If one of them carries it we’ll have more time to help them adjust and to seek treatment,’ explains Bill.

It was — by cruel irony — her pregnancy that accelerated Nikki’s own cancer. Two months after the boys were born she started to feel ill.

Another awkward question arises. Would she have had her cherished sons had she known pregnancy would precipitate her own decline into incurable illness? On this, again, she is unequivocal.

‘You hear a lot of mothers say they’d give their life for their children — and I would, too,’ she says. ‘So no, I don’t regret for a second that I had the boys. If I was put on this earth just to have Jack and Harry my work is done. I don’t regret a moment.

‘I worry, though, that people might think I was reckless; that I shouldn’t have got pregnant — but the truth is, I was naïve. I remember asking my consultant, “Do many patients with MEN1 have families?” and he said, “Yes, they do.”

She was still breast-feeding the twins when she noticed her weight was falling; she retched every time she bent down. But she reassured herself that nursing mothers often suffered such symptoms.

More disquieting, however, was the fact that her ‘baby bump’ was not diminishing; strangers would routinely stop her in the supermarket and ask if she was pregnant.

‘It started to get embarrassing,’ she recalls. ‘Then I noticed a lump on my stomach.’ Even this did not alarm her unduly. ‘I thought, “I’d better nip to the doctor’s”,’ she says.

While her doctor suspected it was benign, an endocrine specialist at Hammersmith Hospital in West London had a worrying prognosis: scans revealed a large tumour had grown on Nikki’s pancreas and was spreading to her liver.

‘I was terrified; especially at the mention of liver cancer,’ she says. ‘I remember, too, the look of doom on the faces of Bill’s family. I thought: “Don’t look like that. I won’t die.”'

Indeed, the consultant was reassuring.

‘He said it was slow-growing and treatable,’ says Nikki. ‘So I calmed down.’

Within two months, she underwent surgery to remove the primary tumour on the wall of her stomach. By March last year, when she was due to start chemotherapy to treat the remaining growths, doctors discovered another lump on her abdomen. She was rushed into the oncology ward for emergency treatment.

‘Jade Goody had just died of cervical cancer and I was frightened,’ she says. ‘The newspapers and magazines were full of this young mum whom the doctors couldn’t treat. It was then that I thought: “They’re not magicians. I know they’ll try their hardest, but they’re not guaranteed to save me.”

Frightened: Jade Goody was going through similar strife at the same time as Nikki

But Nikki did, of course, survive. It seemed her sheer strength of will — combined with chemotherapy — had triumphed. The tumours shrank.

But months later, a body scan disclosed that the cancer had become more aggressive and spread to her pelvis. It was then that her consultant oncologist at Hammersmith Hospital, Mr Harpreet Wasan, told Nikki her only hope — the last drug available to her that had any chance of saving her — was Sutent.

There was, she was told, no chance that she would live without it; yet in February, a panel of NHS ‘experts’ decreed that she was not eligible to be given the drug. It was then that Mr Wasan — who could think of no other solution — suggested the couple fund Nikki’s treatment themselves.

‘We are using my pension; the lump sum I received when I had to retire from teaching because of my illness — the money we thought would help us through our old age — to pay for the drugs.’

Thankfully, friends have rallied and are also fund-raising on Nikki’s behalf. So far around £4,000 has been raised. Their generosity has moved her deeply. But though their goodwill is limitless, the cash is not.

Meanwhile, in the two months since she has been taking Sutent, Nikki has felt her spirits rise. Her strength, which had ebbed away, is returning. Life has meaning again.

‘I may not be an active mum, but I’m still here,’ she smiles. ‘I’m here to guide and advise the boys; to see them grow and to watch them thrive — and that all gives me comfort.’

She is a mild-mannered woman, not given to fruitless rages, but she reserves the full force of her anger for the bureaucracy forced on the NHS by a Government that has flagrantly disregarded the needs of the patient.

‘It seems short-sighted in the extreme,’ she says, ‘that the NHS has spent thousands of pounds providing me with scans, operations, chemotherapy drugs and blood tests — and it’s pulling the plug on me now when I need help most.

‘There doesn’t seem to be a cohesive policy.

‘They’ve invested time, money and the resources of experts to try to get me well — and now they’ve failed me at the last hurdle.

‘They’re effectively telling me I’m ready for my long box — but I’m telling them I’m prepared to put up with anything to preserve the life I treasure, for the sake of my family.’
If you wish to make a donation to help Nikki Phelps pay for her medication visit: www.nikki-fundraising.co.uk


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