Ian Jenkins has advanced kidney cancer and pays for some drugs privately
The BBC has learned that payments to top up NHS care - supposedly banned - are happening at 30 hospitals across the UK.
Professor Mike Richards, the cancer tsar for England, has been holding a review about so called co-payments and will report at the end of this month.
The issue is also under review in Wales and Scotland.
But patients are already topping up their NHS care, as hospitals find ways around the current rules.
Ian Jenkins, 47, has kidney cancer which has spread to his lungs.
Reading to his daughter Eve has become a welcome escape.
The longer time I have with her the more chance and the more opportunity there is that she she is going to remember me as her dad
Ian Jenkins Cancer patient
Ian knows his prospects are not good, but he wants to do everything he can to prolong his life.
"I have a two-year-old daughter," he said.
"She is growing up at the moment and her memories of me are developing.
"The longer time I have with her the more chance and the more opportunity there is that she she is going to remember me as her dad."
Ian is a patient at the Queen Elizabeth Hospital in Birmingham.
He wants to top up his care and buy a new cancer drug called Sutent that is not available on the NHS.
The current rules say you cannot mix and match between the NHS and private.
You are either all NHS and it is free or you're all private and you pay for everything.
But the details are interesting. The code of practice says a patient cannot be both an NHS patient and private in the same episode of care.
Way round problem
So in Birmingham they have found a way round the ban on top ups.
Ian wants his daughter to remember him
Ian's visit to hospital to see his NHS consultant is treated as one episode of care.
Separately another consultant at the same hospital writes a private prescription for the drugs that Ian wants to keep him alive.
They are supplied at Ian's home by a private company called Healthcare at Home.
Ian pays the company direct. So the administration of the drugs is viewed as a separate episode of care.
Professor Nick James is the oncologist in Birmingham who designed this model of allowing patients to top up their care.
"Nowhere does it say that an episode of care is from diagnosis to death of your cancer" he said.
"So we've just interpreted the rules in a way which is in favour of the patients."
Across the country
What is remarkable is that topping up, something the government says is banned, is not just happening in Birmingham.
The company which provides the drugs to Ian says they have contracts with 30 NHS hospitals across the country.
Mike Gordon, chief executive of Healthcare at Home, said: "Top ups are happening today and they'll happen tomorrow.
"So long as they're done through us not using the auspices of the NHS I see no reason why they shouldn't continue."
A Department of Health spokesperson said: "We know there is variation in how individual Trusts are applying the current guidance, and that is why the Secretary of State asked Professor Mike Richards, National Clinical Director for Cancer, to lead a review into this difficult issue.
"Professor Richards is looking at how a consistent approach across the country might be best achieved."
Shadow Health Secretary Andrew Lansley said: "David Cameron and I have pressed the Health Secretary, Alan Johnson, to enter into a risk sharing scheme for the kidney cancer drug Sutent in order that patients will be able to access this life saving treatment immediately, but nothing has been done."
Norman Lamb, for the Liberal Democrats, said: "We are in an outrageous situation where patients are left in a lottery, dependent on a few hospitals which are bending the rules.
"This case makes the need for reform all the more urgent."
All Ian Jenkins wants is to stay alive as long as possible.
But his story does raise the question, why the need for a high level review of top ups if they are already happening all over the country?
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