All or nothing: patients are told no to private top-ups

You want a groundbreaking new drug that your consultant feels could offer significant benefits in treating your serious condition. Your local primary care trust will not pay for it because it is not approved for the proposed use and you cannot get on a clinical trial. But you have enough money to pay for it privately. There is just one problem: when you ask the hospital treating you to start the drug and send you the invoice, you are told that you are not allowed to do this - you must either accept the NHS package or pay for all of your treatment, not just the drug, and be treated as a private patient.

That is the dilemma facing a small but growing number of patients who have tried to pay for treatment the NHS will not fund.

It is an issue that strikes at the heart of NHS principles. The Department of Health says: "Allowing co-payments would risk creating a two-tier service, undermining the basic legal obligation that NHS care must be provided free at the point of use, based on clinical need, not ability to pay."

Melissa Worth of solicitors Halliwells is representing a number of patients who want to buy additional drugs. They have been told they will have to be treated privately in order to get the drugs - which could cost them up to£15,000 a month. She says: "Our clients are not trying to tamper with NHS resources, all they want to do is to complement the care they are getting."

Several of her clients have been considering judicial reviews, potentially using human rights legislation. This month Cornwall and Isles of Scilly PCT agreed to fund a breast cancer drug for one woman who had been told by an acute trust she could not pay for it without being treated as a private patient. In Newcastle, a fundraising campaign raised£36,000 to pay for drugs for a woman with bowel cancer - only for her to be told she was then going to be treated as a private patient.

The national media has described this issue as being about co-payment but it is probably more accurate to talk about "topping up" NHS care. Co-payment has been used almost since the inception of the NHS - mainly for dentistry and prescriptions, but at the instigation of the NHS rather than the patient. However, "topping up" is different - it is led by the patient and can involve considerable cost.

Mix and match

Patients "mix and match" private and NHS care in many ways - ranging from private scans to avoid long waiting lists to paying for osteopathy for back pain while also being treated with drugs by a GP. Patients waiting for an NHS IVF appointment may have treatment privately in the meantime. Travel vaccinations are a bizarre mix of the public and privately funded - sometimes given in the same visit.

Generally, this presents no problems because the private and public funded care can be seen as separate events - a distinction enshrined in NHS lore. The DH says: "It is a long-standing principle that an individual cannot simultaneously be an NHS and a privately funded patient of the same NHS hospital within the same episode of care."

But the current cases have thrown this into the media spotlight. Karol Sikora, professor of cancer medicine at Imperial College School of Medicine and a regular commentator to national newspapers, says: "Co-payments are going to be a problem right across the NHS, but the fault line at the moment is with new cancer drugs. There is chaos out there."

Last year several cancer networks discussed the issue, which has led some trusts to revise their position: Royal Cornwall Hospitals trust, which was involved in the recent case, has now stopped new patients paying for drugs in this way.

Doctors have told HSJ of varying practices, even within the same strategic health authority area. In some cases, doctors will direct patients wanting unfunded drugs to another consultant privately for them, while continuing the rest of their care.

But other trusts take a stricter interpretation and insist that patients go entirely private if they want the drugs - one doctor says he knows of patients who have been forced to remortgage their homes to fund private care. Some consultants just write a prescription, without charge to the patient, which can then be made up privately. The DH will not comment on these practices and whether they fall within its guidance.

The problem seems particularly acute with certain drugs. One of these is Avastin, which is being prescribed by some doctors for use in breast cancer care but is still being assessed by the National Institute for Health and Clinical Excellence for this use. Avastin is administered intravenously, often in combination with other drugs, which makes it harder for patients to receive it outside their main package of NHS care. It has recently been licensed for use in advanced bowel cancer in conjunction with chemotherapy. It costs£1,800 per month.

Generally the drugs at the heart of these arguments do not offer a "cure" or long-term remission from cancer - they may delay progression of the disease or help patients survive longer. Clinical trials suggest colorectal cancer patients given Avastin as a complementary drug survive five months longer but require drugs for 10.6 months.

Patients can go to PCTs' exception committees to try to get the treatments. Terry Priestman, a medical adviser to the charity Cancerbackup, says social factors often sway committees for or against these drugs - which may seem just as unfair as allowing patients to pay for them.

Insurance policy

Health insurer WPA offers a plan to cover the cost of unfunded drugs. A spokesman will not say how many people have taken out the plan but will say it has exceeded expectations, which may indicate widespread concern among the public. It has also got a judgement from a QC that there is no bar in law to a patient buying drugs and having them administered as part of NHS treatment.

But is it acceptable that some patients can buy "better" care and still remain within the NHS for much of their treatment? Gill Morgan, chief executive of the NHS Confederation, agrees that these situations are very difficult. But she argues: "I do not believe the NHS should be involved in handing out ineffective treatments even with a top-up payment. I have no problem with a patient wanting to go to a doctor privately for that component of treatment."

But it is not always the case that these drugs are obviously ineffective, and presumably the clinicians recommending them believe that they will benefit the individual patient. In some cases these drugs may not be licensed for a particular use, others will have been through the licensing system but may not have been assessed by NICE.

Some drugs will ultimately be rejected by NICE because they do not offer enough benefits to the patient to justify the cost to taxpayers. But the patient could feel differently - and it can seem particularly harsh to then say they cannot spend their own money on it without jeopardising the funding of the rest of their treatment. The added irony is that if patients do choose to go totally private, they could end up in the same hospital seeing the same clinical staff and sometimes even in the same unit.

The NHS line about not mixing private and public care in the same episode but allowing patients to move between private and NHS-funded care in other circumstances, may be clear to those who work in the service, but what about the public? Would they recognise a difference between patients who can obtain a cancer medicine from a private doctor and take it at home, and those who are willing to pay but need to have it administered as part of chemotherapy? In a sense, both are trying to buy an "advantage".

Patients Association vice-chair Michael Summers wants the government to look again at the question of co-payment. He says the current position is iniquitous and illogical. The public does not see the "same episode of care" as being a crucial distinction, he says. "The public will just say that care is care."

But Dr Morgan suggests that the dispute may also say something about the modern approach to death: "We have lost something in this: the ability to talk to people about death in a reasonable way.

"I personally would not take some of these drugs, sometimes the average life expectancy [of patients on them] is weeks rather than years."

But while patients want a few more months of life at almost any cost, these dilemmas will not go away. The NHS will be forced to consider whether it wants to be seen as pushing seriously ill patients into private treatment by denying them the "right" to buy additional drugs.

Why cancer drugs?

Cancer is the foremost battleground for the argument about topping up. There are several reasons for this:

• much more is understood about cancer than even 10 years ago;

• it is common in the developed world (where either the health service or the patient usually has the means to pay for treatment);

• a large number of new drugs are being developed that are effective for sub-groups of patients rather than all patients with a particular condition. This means that the cost of developing the drug is spread between fewer patients.

Cancer - especially in its terminal stages - is an area where patients are keen to try anything that might work for them. Information (sometimes inaccurate) available online means knowledge of potential "wonder drugs" spreads rapidly. Patients who fear they may only have weeks or months to live do not want to wait for the latest licence or NICE guidance.

Many of the new drugs are not replacements for other drugs; they are "add-ons", which may make them vulnerable to failing cost-effectiveness tests.

Gill Morgan of the NHS Confederation points out that targeted drugs may be more expensive per patient but that money is not wasted giving them to patients who will not benefit. Many cancer drugs have serious side effects and targeting will ensure that patients who will not benefit do not have to suffer them. This may change the cost-benefit picture of these drugs.

Karol Sikora of Imperial College School of Medicine expects to see around 40 new cancer drugs available in the next three years, many of which will not be recommended by NICE. However, many will be pills, making it easier for patients to administer at home if they are prescribed privately.