It was on Tuesday, November 4, 2008 that Alan Johnson, the Health Secretary,
stood up in the Commons and put an end to a year of campaigning against a
heartbreaking NHS principle. A number of cases had thrown harsh light on the
rule whereby, if a patient dared to pay for drugs that the service would not
afford, that patient lost all entitlement to free care. A national campaign
followed the death of Linda O’Boyle, a retired NHS worker who opted to
lengthen her life and spent her last days paying out for all her routine
healthcare. The policy was reviewed and Johnson said ringingly that the rule
would end “with immediate effect”.
He was praised for this; political worries about a “two-tier health service”
were largely allayed, for these are few and desperate cases. You could
innocently assume that the words “with immediate effect” meant that hospital
trusts would jump to it and work out how to manage “co-payment”.
You think so? Then you don’t know the NHS for the great, creaking dinosaur it
is, top-heavy with managers yet struggling to cope even with such a clear
and public instruction. Hear this story, about one couple’s struggle over
half a year. The villains are not bureaucrats from the National Institute
for Health and Clinical Excellence (NICE) or drug companies: they — and the
medical staff — come out quite well. The evil lies in management: in fudge,
muddle, ignorance and a corporate jobsworth yawn in the face of a change
directed (but not monitored) from the top.
In late 2007 a fit young artist in his thirties, call him Joe, developed a
lump in his shoulder, soon diagnosed as a secondary tumour from kidney
cancer. At this stage both he and his civil partner Richard were full of
praise for their hospital, which operated quickly. By January, though, the
cancer had spread farther and only one drug offered real hope of delaying
its advance: sunitinib, or Sutent. It is expensive — about £50,000 a year —
and last year there were several well-publicised battles by kidney patients
to get it. Joe was lucky; his oncologist was persistent. Even so, the
doctors didn’t dare to scan him for months: “They said,” reports Richard,
“that they couldn’t afford bad news in case the money got stopped.” It was a
knife-edge time: at this point any attempt by the couple to pay for the drug
themselves would have led to an impossible demand that they fund everything.
Sutent was tough — Joe felt tired, weak and his eyelashes turned weirdly white
— but effective. “There’s no doubt,” says Richard, “that it held the onset
of Joe’s tumours back.” Joe carried on working whenever he could, doing art
projects with schools, living his life, feeling grateful. “I want to stress
that,” says Richard. “We are grateful. It has been brilliant.”
By December the Sutent had stopped working. New tumours grew and Joe weakened.
He asked for a prognosis and the doctor said: “I think four months.
Certainly not a year.” Not an easy message for a man of 37.
“We were quite unprepared, which sounds stupid. It was a real shock,” says
Richard. “But the doctor said, look, there is a new drug — sorafenib, or
Nexavar — but the trust won’t fund it.” At this point they remembered the
Health Secretary’s promise and asked about “co-payment”. They had no
unrealistic expectations . “We totally accept that the NHS has to make
decisions,” says Richard. “Fifty thousand buys a lot of hip replacements. As
for the new drug, I was always very clear — this isn’t going to cure him or
save his life. The extra months are a luxury. But people buy luxuries all
the time. We wanted to pay.”
You would think that, three months after the Johnson announcement, the rest
would be simple. You would be wrong. The consultant — who “really wanted to
help” — sincerely believed that their only option was to go to a private GP
for a prescription, pay at a pharmacy and he could quietly continue to treat
Joe. “He slipped us an address. It was starting to feel like shifty 1950s
abortion stuff,” says Richard.
A pinstriped private doctor in Kensington, Central London, charged £140 for
ten minutes. “He had spoken to our oncologist but knew nothing about these
drugs,” says Richard. “I had to tell him the name and the dose.” Next came
the private pharmacist. “The doctor explained that they are allowed to
charge a mark-up of up to 100 per cent, so we should negotiate. Nexavar’s
list price is £2,650 for a four-week cycle. So we went to this Mr Dodgy and
he quoted £3,800 — rather a big mark-up for not much work, even including
VAT .”
A scene then developed which Richard describes with some horror: the
pharmacist struggling to take the prescription off him, insisting on
photocopying it, fighting hard for his easy money: “I suppose they are used
to Russian oligarchs and sheikhs.” Their glimpse into the for-profit health
system was making these ordinary young men almost as queasy as the
chemotherapy made Joe.
“I kept imagining people less tough than me,” says Richard. “I’m a freelance,
I negotiate gigs, I’m used to challenging corporate systems. Suppose you
were more timid? Other pharmacies said anything from £3,500 to £4,400, like
they were just making up numbers. I was really uncomfortable with all this
creeping around. Suddenly I felt like a perverse child — I wouldn’t put up
with it. Why should it be so under cover? We’d been told that it was
allowed.”
He began badgering trust officials. “I said I was a journalist — it speeds
things up. If you say it’s for a patient, they just go ‘uh!’.” Finally he
got through to the primary care trust commissioner for his area and hit
gold. “He said I was absolutely right, the principle was set and the trust
should let us buy the Nexavar from the hospital pharmacy, without mark-up.
The trouble was that they hadn’t written their policy on it yet.” It was now
a clear four months since the parliamentary announcement. The commissioner
also said that it should be prescribed at an NHS appointment — making the
£140 to Dr Kensington-Pinstripe money down the drain.
It was not over. When Richard rang up about collecting the drug, “the private
wing manager said ‘Mr G---, I’m sorry to sound rude but I am tired of
repeating it: you are not allowed to do this’. I told her that she was
wrong. I made the commissioner ring her. She came back saying, ‘Well, I was
working on old information’. Then she told me that there was a 10 per cent
mark-up, to £3,130. I challenged that by letter. The answer came back that
it was ‘in flux’ because they ‘hadn’t had a chance to incorporate the
government guidelines into policy’. But they waived the 10 per cent as a
gesture of goodwill.”
But get this: just as Richard set off to collect the drug, a routine call from
a cancer nurse just off maternity leave revealed something else that you
might think management would know. “At a Bayer conference she had chatted to
a drug rep about her Sorafenib case and the rep said ‘aren’t you taking
advantage of the free first month?’ It’s even on the NICE website! Nobody
knew — and there’s me with my credit card ready . . .”
So, from being asked for £4,500, then £3,150, then £2,800, he paid nothing.
Until the second month: when, back at the hospital pharmacy, he was quoted
£3,480. “I’m standing there in the private wing with two managers saying ‘we
think this is terrible’ and me saying “I’m not going to pay that because you
don’t even know why you’re charging it. I made them find out. They now say
that it’s to ‘bring the cost into line with Europe’.”
So his partner Joe, the gentle young man who just wants a few more months to
come to terms with his sentence and help his parents, siblings and their
small children to do the same, carries on with a tough drug regime paid for
willingly by his circle of friends. The Bayer drug rep — “one of the
most sympathetic and interested people in the whole business” — rings to see
how he is doing, and photographs of his weird chemotherapy rashes are passed
to researchers. Joe, a good-humoured and stoical guinea pig, is advancing
medical science and paying for the privilege.
His partner, who has fought this battle while inwardly facing the loss of his
lover of 14 years, sighs. “It has settled down now but God knows what it’s
like in other trusts. I have helped ours to establish the logistics but it
wasn’t my job. Imagine some family just wanting to keep Dad alive for a
daughter’s wedding, going through this maze and being ripped off.”
Richard wants the story told to encourage other NHS trusts to get their act
together. I have asked three, across the country, whether they do any better
but none has rung back.
The Department of Health says that “formal guidelines” on co-payment were
issued on March 23 (21 weeks after the Health Secretary’s announcement) and
can be found on its website by
clicking here but insists that these show only “minimal changes” from
the “informal guidelines” of November — about which layers of hospital
officials appeared, in this case, to know nothing. Nobody has figures on how
many patients use the system, or try to. Or, indeed, fail to.
Richard is the soul of reason. “Please, make it clear this is not a rant of
‘we deserve to be kept alive at all costs’. I look at the NICE website a
lot; they don’t take decisions lightly and the money isn’t infinite. These
are brand new drugs. It is just that the rules did change and we are
entitled to scrape up the cash while Joe wants to. What I object to is the
messiness and laziness of the NHS. Doctors and nurses have been great but
the managers take no interest in this really important change. It’s not
ideological: they just think that it’s going to mess up their systems.
‘Computer says no’ and their computer is out of date. I think I have opened
a door for other people. But it wasn’t my job.”
Meanwhile, the pair are getting on with their lives. Joe has defied his
prognosis and seen the May blossom on the cherry tree; his days are hard, he
cannot walk many steps or eat and laugh with us all for long at a time. But
he may yet see the cherries on those trees this summer. His extra weeks are
a loving gift from friends and family, and the pity is that they had to be
won from a thicket of incurious, dismissive, sclerotic managerialism.
One wonders if any health secretary knows how little effect it has in real
life when he grandly says “with immediate effect . . .”
Cancer drugs: who pays and how?
Recent changes in guidance on the use of previously restricted cancer drugs
from both the Department of Health (DoH) and the National Institute for
Health and Clinical Excellence (NICE) will give more patients access to a
wider range of drugs, but implementation varies between hospitals.
NICE has softened the criteria on previously restricted drugs, so some
terminally ill patients will be entitled to them on the NHS. The decision is
normally made by a committee, but it would be your oncologist who acts as
your advocate.
The other change relates to your rights to pay for additional drugs without
losing your entitlement to free NHS treatment. There is still some confusion
over how to implement this.
You can now buy extra drugs yourself to treat your cancer, as long as there
is no extra cost to the NHS. The drug can be prescribed by your NHS
oncologist and issued by a hospital pharmacy (with a sensible margin to
cover costs) but must be administered in a private setting (unless the
patient is too ill for this). You pay for any extra consultation fees,
nurses’ bills, scans and equipment used.
Dr Mark Porter
