Page last updated at 12:44 GMT, Friday, 7 November 2008

Cancer patients miss out on therapy

By Nick Higham
BBC News

Ian Lawrence
Ian Lawrence travelled to Paris for treatment

Ian Lawrence is a physicist. He taught physics; then he taught physics teachers; now he devises physics courses.

So he speaks with some authority when he says there are good reasons in physics why proton therapy is a better way of "cooking" cancer cells than conventional radiotherapy.

And he is prepared to put his money where his mouth his.

He has just paid out Euros 47,000 (around 40,000) for a six week course of proton therapy treatment at a hospital near Paris, after a cancerous tumour was discovered on the optical nerve leading to his left eye.

He had surgery which removed most of the growth; the proton therapy treatment is designed to destroy any remaining cancer cells.

Ian was operated on at a hospital in Birmingham, but he has had to go abroad for proton therapy because the treatment is unavailable in the UK. He is not alone.

Brain surgery

Alex Barnes from Leicestershire is just five.

Alex Barnes
Alex Barnes had treatment in the US

Last month he underwent surgery for brain cancer - for the second time in his short life - at a hospital in Jacksonville, Florida and has now started proton therapy treatment there.

The cost: approaching 100,000, partly paid for by well-wishers including BBC viewers and listeners in the East Midlands.

So, should proton therapy be available here in the UK?

The treatment has one great advantage over conventional radiotherapy, in which the X-rays used to kill cancer cells also kill the healthy tissue surrounding the cancerous tumour.

In most cases that is a price worth paying.

But it is bad news for children with cancer, because the side effects of radiotherapy can damage their development; and it is bad news if the tumour is inside or right next to some especially sensitive organ - the brain or spinal cord, for instance, or the eye.

Proton therapy is much more highly targeted.

A stream of charged atomic particles called protons is fired into the body; they only release their energy when they reach the site of the tumour -- leaving surrounding tissue unaffected.

One machine in the UK

The UK has only one proton therapy centre.

It is at Clatterbridge, on the Wirral, and because it's a low-energy machine whose protons travel a maximum of 31mm it can only be used to treat eye cancers.

Eye treatment
The UK's only machine is used just to treat eye problems

The treatment room looks like a cross between a very clean torture chamber and a piece of 1950s sci-fi.

Patients are seated in an adjustable metal chair, home-made like much of the equipment because 20 years ago, when the centre was established, the relevant kit couldn't be bought off the shelf.

A mask is placed over the face, with a hole cut out for the eye; the patient bites on a special mouthpiece to keep the head still, and the chair is then aligned with the proton "gun" emerging from one wall.

On the far side of the wall - and buried under a thick earth and concrete mound, covered in trees and radiation warning signs - is the device which actually produces the protons.

It is called a cyclotron, it is highly-radioactive when in operation, and it seems awfully big compared to the tiny dose it delivers.

It is also highly expensive: A new cyclotron costs around 20 million - more than ten times the cost of the linear accelerators used in conventional radiotherapy.

Add in the cost of treatment rooms and clinical facilities, and a fully-equipped proton therapy centre would cost between 50 million and 100 million.

Working party

The Department of Health is setting up a working party to look at the "business case" for building more proton therapy centres in the UK.

Its chairman is Dr Adrian Crellin, a cancer specialist from Leeds.

Cyclotron technology is very expensive

He told me he thought the huge cost of a new centre could be justified - there is, he says, "an extremely strong case" for proton therapy as a treatment for certain types of cancer.

The case is stronger because the NHS is already paying to send patients abroad for proton treatment: applications for support are vetted by another committee which Dr Crellin also chairs.

Ian Lawrence applied for money but was turned down - he does not know why.

Alex Barnes's family didn't bother to apply - according to his mother, Roz, they were told it would take too long to process the application, and anyway Alex's particular type of brain cancer wasn't one of those on the committee's list.


Going abroad has drawbacks: it is expensive, it is disturbing for patients, it takes them away from the hospital and medical team providing them with surgery and other care, and (especially in Europe) there are limits to how many patients from the UK that overseas facilities are prepared to take.

Ian Lawrence was originally referred to a centre in Switzerland which was full; and when I met him in October he should have been in France having treatment but had come back to the UK because the machine near Paris had broken down.

The biggest hurdle facing enthusiasts for proton therapy centres in the UK is undoubtedly financial.

In the US, with its private health system, that is less of an issue.

Hospitals like the one in Jacksonville build proton therapy machines and make most of their money treating hundreds of cases of common conditions like prostate cancer.

In the NHS, where money is much tighter, only a very few cancer sufferers would be likely to qualify for treatment - perhaps as few as 400 a year - to prevent the facilities being overwhelmed.

Research needed

There is another hurdle: there is no scientific proof that proton therapy works, nor is there likely to be.

It is difficult to conduct the kind of research study - giving some patients the treatment while withholding it from others in a control group - used to validate most new treatments.

What is more an earlier type of treatment using charged particles, called neutron therapy (which Clatterbridge was originally set up to deliver) not only did not work but may actually have harmed its patients.

Some cancer specialists are highly sceptical.

Proponents of proton therapy I have spoken to - not just Adrian Crellin but Professor Bleddyn Jones, the consultant in Birmingham who treated Ian Lawrence and Dr Andzrek Kacperik, the man who runs the cyclotron at Clatterbridge - believe the results speak for themselves.

And Roz Barnes, Alex's mother, points out that the lack of proper scientific proof hasn't stopped several leading US hospitals from offering the treatment.

But with money tight and many other expensive new treatments vying for support, the decision on whether to develop proton therapy centres in the UK will not be an easy one for the NHS.

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