When Linda O’Boyle, a 64-year-old retired health worker from Billericay in Essex, was diagnosed with terminal bowel cancer she was told that the drug Cetuximab could significantly prolong her life.
Unfortunately, it wasn’t available on the NHS, so Linda and her husband, Brian, decided to buy the drug themselves, at a cost of around £3,700 a month. They were prepared for this huge bill; what shocked them was that Southend University Hospital NHS Foundation Trust told them that, as they had paid for the drug, Linda was considered a private patient and all her free NHS treatment was withdrawn, including the chemotherapy drug she had been receiving – adding an extra £11,000 to the bill.
When the news hit the headlines, there was an outcry, which only intensified when Linda died last spring.
Over the past few years, the debate has intensified as many more patients’ experiences have been highlighted in the media. Sue Bentley, aged 67, from Usk in Monmouthshire, for example, paid privately for the drug Avastin to treat her lung cancer and as a result lost her free NHS care, including chemotherapy. She had to pay £5,000 before she had any chemotherapy and now has another £3,500 bill.
Richard Eckley, a 68-year-old Herefordshire farmer, was diagnosed with kidney cancer in November 2007. His local primary care trust, Powys, would not pay for him to have the cancer drug Sutent. Richard was forced to pay £4,000 a month for the drug, plus £1,000 for the rest of his care, after Gloucestershire Hospitals NHS Foundation Trust withdrew NHS funding for the rest of his treatment.
Debbie Hirst, 57, from Cornwall, could not get Avastin to treat her breast cancer. She raised £10,000 and put her house on the market with the aim of raising £60,000 for the full course of treatment. In the end, she didn’t buy the drug, because she couldn’t raise the money she needed to pay for her ongoing care.
Throughout the ongoing controversy, the government stood by its approach. Health secretary Alan Johnson said that lifting the ban on co-payments would result in a “two-tier NHS”, with those unable to afford private drugs being made to suffer for their lack of wealth.
But the situation became untenable. The media coverage of individuals suffering, and sometimes dying, as a result of top-up rules, weighed heavily on the government. It also faced an increasing number of legal challenges to individual NHS trusts’ decisions to deny drugs, and the independent Doctors for Reform group threatened an all-out legal challenge to the policy itself.
There were questions whether the NHS guidelines could hold water. Health insurer WPA took legal advice and deemed the ban on top-ups so unsound that it launched a product which would pay for cancer drugs for NHS patients.
Charlie MacEwan, corporate communications director for WPA, says: “The guidelines can be read to suit the reader. We were confident that it was unlawful for them to refuse to treat someone who bought their own drugs, and that any challenge could be successfully defeated.”
Meanwhile, some hospitals were working to get around the rules. They allowed patients to see one consultant for NHS care, treating that as one episode of care. They then allowed the patient to see a second consultant, who wrote a private prescription, as another episode of care. Healthcare at Home says it had contracts with 30 NHS hospitals to offer treatments privately to patients who were also receiving standard care.
The situation was ludicrous, so Alan Johnson asked Professor Mike Richards, a cancer expert, to look at the issue. The Richards review recommended, alongside a host of other proposals, that patients should be allowed to top up their NHS care without forfeiting the right to further care on the NHS in the same episode of treatment. And, as a result, the government performed a U-turn last autumn.
Top-up ban lifted
The new proposals, which came into effect on 5 November 2008, allow top-ups without precluding patients from further NHS care, but they also propose to make drugs easier to access through the NHS. MacEwan explains: “The National Institute for Health and Clinical Excellence [the body that approves drugs] is going to look at the levels.
"At the moment, if it costs more than £30,000 to extend your life by a year, the drug wouldn’t be approved for the NHS. NICE is going to increase that level. No-one knows by how much, but it could be between £49,000 and £100,000.”
This would be a welcome change, says Ciaran Devane, chief executive of Macmillan Cancer Support. “The real issue was always how to make new life extending-drugs available on the NHS to cancer patients who need them. We are very pleased that Alan Johnson has recognised this and is committed to reforming NICE to make sure this happens. It’s right to reform the system that didn’t allow these drugs in the NHS in the first place.”
When it comes to the new proposals on top-ups there are some practicalities to be ironed out in the way that individuals can be treated with private drugs. They have to be administered privately, at an individual’s home or in a private ward, so hospitals will have to work out the logistics for bed-bound patients. Patients will also have to pay for any treatment that is directly connected to the drugs, such as blood tests.
Anna Brosnan, spokesperson for Macmillan, says: “There’s a lot of confusion over what is and isn’t covered, and we’re putting together factsheets to try to help.”
Pros and cons
There are obviously some problems with top-ups. Some commentators are worried about the emergence of a two-tier system within the NHS and the fact that a number of free treatments will disappear. MacEwan says: “The government has to make sure the NHS remains a system offering universal access.”
Of course, the problem remains that, despite being allowed to top up, patients have to be able to afford it. Brosnan says: “We believe that most people can’t afford to top up their care. Already one in 17 cancer patients loses their home [due to all the expense involved].”
For those who opt to take the self-pay route, it’s important to shop around because there are no fixed prices for treatment. Malcolm Jones, managing director of treatment sourcing company Medical Care Direct, says: “The range depends on the treatment you’re looking for, and how far you’re willing to travel to get it but, on average, patients can save between 25% and 30% by shopping around for their care.
"People don’t realise there are savings to be made, and assume that the medical world is too complicated for individuals to tackle, but it’s worth doing because the savings are so substantial.”
There are also some insurance products on the market that can help cover costs. A cash plan, for example, will pay out a fixed fee whenever you get treatment. Stephen Duff, deputy chief executive of cash plan provider HSF, says: “We’ll also pay out for any treatment that goes alongside taking private drugs, such as pathology or consultant’s fees.”
However, this still leaves patients having to find thousands of pounds to pay for the drugs themselves. There are some newer insurance products that can help with this, such as the cancer top-up plan from WPA, launched 18 months ago, called mycancerdrugs.
MacEwan says this has been so popular that six months ago it launched a more general top-up product to cover any kind of top-up care. BUPA has also announced it is considering launching something similar, although so far it has said it’s too early to tell how much business could be generated by the decision.
Other insurers are less keen to jump on the top-up bandwagon. Tal Gilbert, head of research and development at PruHealth, says the company is unlikely to offer a similar scheme. “Our research shows that the number of people who have to pay for top-ups is quite small.” He adds that with the proposals to make more drugs available on the NHS, the few thousand who do top up are likely to become a few hundred.
Of course, comprehensive private medical insurance still offers a vital alternative. This bypasses top-ups by paying for all private care. However, it’s not cheap.
Howard Hughes, head of marketing for insurer BCWA, says: “I won’t pretend it’s the cheapest product in the world, but it’s an investment in your health. There’s also a lot of choice, so you can get coverage purely for those conditions you are most concerned about. There are cancer-specific policies, and even one offering coverage purely for female-specific cancers.”
However, Brosnan warns: “We think only three of the major providers reach the gold standard for cancer care. You need to check the small print carefully because there are some worrying exclusions.” This means some policies might not cover the treatment you wish to have.
You could also consider taking out critical illness insurance which would pay out a lump sum should you be diagnosed with a critical illness covered by your insurer. That way, you could use the payment to pay for any treatment you want but can’t get on the NHS.
There are alternatives if the NHS won’t pay for care – you can buy insurance, cash plans, top-up plans, or save a lump sum just in case.
The top-up rules have given us the opportunity to pay for our own care. But you need to find a way to ensure that, if that time comes, you can pay for that care.