The family of a woman with an inoperable brain tumour raised over £130,000 to send her for treatment in America – only to discover that the NHS could have referred her if her local trust had realised it was possible.
The case reveals an "information lottery" in the NHS – a variation on the postcode kind – where access to treatment is dependent on who patients (and their doctors) know, not on their clinical need.
Melissa Huggins, 27, a primary school teacher, is due to fly to Boston tomorrow to be assessed for high-energy proton treatment, a specialised form of radiotherapy delivered by a 70 ton machine that costs £100m. Expenses for the trip will be met from "Melissa's fighting fund" established by her boyfriend, James Pegram, a structural engineer, in October.
Ms Huggins, from Staines, Surrey, who postponed her wedding to contribute to the fund, said yesterday: "All hope fails when you get a diagnosis like this and your world comes crashing down. Then you have to think what you can do about it and pick yourself up. Until people start giving up on me, I won't give up. I don't feel like I have cancer – I look in the mirror and think: 'No'."
Proton treatment is not available in the UK because of the expense. Ministers agreed last year to set up a "reference panel" in Leeds to send cancer patients abroad for treatment to Switzerland, Paris and Boston. So far, 25 patients have been assessed and 18 referred for treatment, at NHS expense.
Ms Huggins and her family did not learn about the NHS scheme until after they had made contact with the Massachusetts General Hospital in Boston, ruling them out of consideration. In an emailed response to their request for help, sent on 5 December, Adrian Crellin, clinical oncologist at Leeds Teaching Hospital and chairman of the National Commissioning Group Proton Reference Panel, said: "We now have a formal process to address who might benefit from proton treatment abroad and make sure that the right cases get access. Your oncologist needs to email me before any referral is made."
As Ms Huggins had already been referred by her consultant oncologist, Mark Glaser, at Charing Cross Hospital, London, who had encouraged her to make the trip if she could raise enough money, she and her family gave up on the NHS and continued with their fundraising drive. Neither her GP, nor Surrey Primary Care Trust, who turned down a request from the family for funding, nor her hospital doctors pointed out that treatment might be available through the Proton treatment panel.
Mr Pegram said: "The reference panel seems to be set up in a way that makes it difficult to obtain a referral. No one knows about it. We applied to the local primary care trust for funding and they turned us down and Dr Glaser, Melissa's consultant, didn't mention it. Unless doctors know about [the panel] they can't help."
High energy proton treatment delivers an intense beam of radiation directly to the tumour with a high degree of precision, sparing neighbouring tissues. Its "sub-millimetre" accuracy means that it can be used on tumours growing too close to vital organs such as the brain and spinal cord to be removed surgically. It can also deliver a higher dose of radiation than would ordinarily be possible because it is focused on the tumour without endangering surrounding tissue.
Ms Huggins, whose case is reported in Oncology Times, was diagnosed in December 2005 after suffering migraines for five years, and underwent brain surgery to remove the tumour. Three years later, in October, she was told that the cancer had returned, and spread to her spine.
Details of the fundraising campaign for Ms Huggins can be found at: www.melissasfightingfund.co.uk.
The case reveals an "information lottery" in the NHS – a variation on the postcode kind – where access to treatment is dependent on who patients (and their doctors) know, not on their clinical need.
Melissa Huggins, 27, a primary school teacher, is due to fly to Boston tomorrow to be assessed for high-energy proton treatment, a specialised form of radiotherapy delivered by a 70 ton machine that costs £100m. Expenses for the trip will be met from "Melissa's fighting fund" established by her boyfriend, James Pegram, a structural engineer, in October.
Ms Huggins, from Staines, Surrey, who postponed her wedding to contribute to the fund, said yesterday: "All hope fails when you get a diagnosis like this and your world comes crashing down. Then you have to think what you can do about it and pick yourself up. Until people start giving up on me, I won't give up. I don't feel like I have cancer – I look in the mirror and think: 'No'."
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| NHS Insurance brain tumor |
Ms Huggins and her family did not learn about the NHS scheme until after they had made contact with the Massachusetts General Hospital in Boston, ruling them out of consideration. In an emailed response to their request for help, sent on 5 December, Adrian Crellin, clinical oncologist at Leeds Teaching Hospital and chairman of the National Commissioning Group Proton Reference Panel, said: "We now have a formal process to address who might benefit from proton treatment abroad and make sure that the right cases get access. Your oncologist needs to email me before any referral is made."
As Ms Huggins had already been referred by her consultant oncologist, Mark Glaser, at Charing Cross Hospital, London, who had encouraged her to make the trip if she could raise enough money, she and her family gave up on the NHS and continued with their fundraising drive. Neither her GP, nor Surrey Primary Care Trust, who turned down a request from the family for funding, nor her hospital doctors pointed out that treatment might be available through the Proton treatment panel.
Mr Pegram said: "The reference panel seems to be set up in a way that makes it difficult to obtain a referral. No one knows about it. We applied to the local primary care trust for funding and they turned us down and Dr Glaser, Melissa's consultant, didn't mention it. Unless doctors know about [the panel] they can't help."
High energy proton treatment delivers an intense beam of radiation directly to the tumour with a high degree of precision, sparing neighbouring tissues. Its "sub-millimetre" accuracy means that it can be used on tumours growing too close to vital organs such as the brain and spinal cord to be removed surgically. It can also deliver a higher dose of radiation than would ordinarily be possible because it is focused on the tumour without endangering surrounding tissue.
Ms Huggins, whose case is reported in Oncology Times, was diagnosed in December 2005 after suffering migraines for five years, and underwent brain surgery to remove the tumour. Three years later, in October, she was told that the cancer had returned, and spread to her spine.
Details of the fundraising campaign for Ms Huggins can be found at: www.melissasfightingfund.co.uk.
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