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Patient's cancer 'lottery' anger Patient's cancer 'lottery' anger
(about 1 hour later)
A cancer patient who is receiving treatment in Switzerland claims he is the victim of a health postcode lottery that is likely to cost him thousands.A cancer patient who is receiving treatment in Switzerland claims he is the victim of a health postcode lottery that is likely to cost him thousands.
Lloyd Evans from Newport, was given NHS funding for specialised proton beam therapy, which is not available in the UK, to treat a rare spinal bone cancer.Lloyd Evans from Newport, was given NHS funding for specialised proton beam therapy, which is not available in the UK, to treat a rare spinal bone cancer.
But unlike patients from England, the 27-year-old has to pay up to £8,000 for his own transport and accommodation.But unlike patients from England, the 27-year-old has to pay up to £8,000 for his own transport and accommodation.
The assembly government said it does not fund travel expenses.The assembly government said it does not fund travel expenses.
Such costs for patients in England are NHS-funded, based on an approved accommodation list and travel guidelines, according to Department of Health guidelines.Such costs for patients in England are NHS-funded, based on an approved accommodation list and travel guidelines, according to Department of Health guidelines.
Mr Evans said the proton beam therapy offered in Switzerland is a much better way of treating his cancer - called chordoma - because it does not leave him at risk of paralysis, which conventional radiotherapy in the UK would.Mr Evans said the proton beam therapy offered in Switzerland is a much better way of treating his cancer - called chordoma - because it does not leave him at risk of paralysis, which conventional radiotherapy in the UK would.
Perhaps [if] I lived a 30 or 45 minute's drive over the Severn Bridge, fundraising wouldn't be an issue Lloyd EvansPerhaps [if] I lived a 30 or 45 minute's drive over the Severn Bridge, fundraising wouldn't be an issue Lloyd Evans
He researched the treatment over the internet and approached health officials after having two operations at the University Hospital of Wales in Cardiff, which failed to get rid of the tumour at the base of his skull.He researched the treatment over the internet and approached health officials after having two operations at the University Hospital of Wales in Cardiff, which failed to get rid of the tumour at the base of his skull.
He was approved for the treatment, which costs around £90,000 and will be paid for by the NHS in Wales.He was approved for the treatment, which costs around £90,000 and will be paid for by the NHS in Wales.
Mr Lloyd needs eight weeks of proton beam radiotherapy sessions, one a day, five days a week, at a centre near Basle.Mr Lloyd needs eight weeks of proton beam radiotherapy sessions, one a day, five days a week, at a centre near Basle.
But he said it was an "unfair playing field" that he was having to raise money for his travel and accommodation costs while patients in England did not have to.But he said it was an "unfair playing field" that he was having to raise money for his travel and accommodation costs while patients in England did not have to.
"I live in Newport which is a stone's throw away from the English border," said Mr Evans, speaking from Switzerland."I live in Newport which is a stone's throw away from the English border," said Mr Evans, speaking from Switzerland.
"So if perhaps I lived a 30 or 45 minute's drive over the Severn Bridge fundraising wouldn't be an issue, putting it on my credit card wouldn't be an issue."So if perhaps I lived a 30 or 45 minute's drive over the Severn Bridge fundraising wouldn't be an issue, putting it on my credit card wouldn't be an issue.
"And you hear the term postcode lottery. Until you are faced with having to raise multiple thousands of pounds to go for treatment which is effectively life-prolonging at the age of only 27, it goes beyond frustration. It really stinks.""And you hear the term postcode lottery. Until you are faced with having to raise multiple thousands of pounds to go for treatment which is effectively life-prolonging at the age of only 27, it goes beyond frustration. It really stinks."
He said he felt like a "charity case" because friends, family and colleagues have been fundraising to help his costs.He said he felt like a "charity case" because friends, family and colleagues have been fundraising to help his costs.
But he still faces having a substantial credit card bill, having already spent around £4,000 during his first few weeks in Switzerland.But he still faces having a substantial credit card bill, having already spent around £4,000 during his first few weeks in Switzerland.
Cath Lindley, general manager for Macmillan Cancer Support in Wales, said the assembly government was "effectively denying him potentially life-saving treatment".Cath Lindley, general manager for Macmillan Cancer Support in Wales, said the assembly government was "effectively denying him potentially life-saving treatment".
"If the Welsh Assembly Government is unable to provide this type of specialist treatment in Wales, but agrees to pay for such treatment in another country, then it should be prepared to pay for its citizens to travel and receive this treatment where it is available," she said."If the Welsh Assembly Government is unable to provide this type of specialist treatment in Wales, but agrees to pay for such treatment in another country, then it should be prepared to pay for its citizens to travel and receive this treatment where it is available," she said.
"If not, we are left with an inequitable two-tier system where those with money will be able to afford to travel to receive treatment and those without will remain denied.""If not, we are left with an inequitable two-tier system where those with money will be able to afford to travel to receive treatment and those without will remain denied."
Survival rateSurvival rate
Chordoma is a tumour formed from fragments of formative spine that break off at early foetal stage.Chordoma is a tumour formed from fragments of formative spine that break off at early foetal stage.
These are generally absorbed as the foetus develops. But in some instances they develop into cancerous tumours, mainly in young adults, that compress or overwhelm bones and organs as they grow.These are generally absorbed as the foetus develops. But in some instances they develop into cancerous tumours, mainly in young adults, that compress or overwhelm bones and organs as they grow.
Only 20 new cases are recorded in the UK each year. The average survival rate is seven years.Only 20 new cases are recorded in the UK each year. The average survival rate is seven years.
The assembly government said it did not comment on individual cases.The assembly government said it did not comment on individual cases.
"While the NHS funds agreed treatment for patients, it does not normally fund associated travel expenses." a spokesman said."While the NHS funds agreed treatment for patients, it does not normally fund associated travel expenses." a spokesman said.
"However, there are regulations issued by the assembly government that the NHS must follow in relation to providing financial support to patients who are on income support or benefits.""However, there are regulations issued by the assembly government that the NHS must follow in relation to providing financial support to patients who are on income support or benefits."