7 year old Neon has Medulloblastoma (brain cancer) and is currently being treated by the NHS with XRAY Radiotherapy in the UK. Although the NHS have acknowledged the treatment could damage Neon beyond repair or even cause premature death; because of costs they refuse to release him to undergo a more effective, less invasive and painless treatment called Proton Beam Therapy, being offered in America. Unfortunately, as Sally has been denied Legal Aid, she is appealing desperately to everyone to help her raise £250,000 emergency funds to mount an immediate court appeal, to receive the Proton Beam Therapy.
It says something pretty damning about the UK’s medical establishment, in the form of the National Health Service (NHS), that it forces a 7-year-old boy with brain cancer to receive damaging whole-brain radiotherapy against his mother’s wishes. It becomes downright perverse when we understand that the NHS is denying Neon Roberts a far less dangerous form of cancer treatment – proton beam therapy – when it has funded patients to go abroad to receive it in the past.
We wish we were exaggerating, but we’re not. These words are taken directly from the NHS webpage on proton beam therapy: “Which cancers does it work best on? Some very rare cancers including tumours affecting the base of skull or spine [such as medulloblastoma] can be treated with high-energy proton therapy...
“It directs the all important radiation treatment to precisely where it is needed with minimal damage to surrounding tissue. The treatment is therefore particularly suitable to complex childhood cancers...
“If a patient’s consultant feels that proton beam therapy might be a suitable treatment for one of their patients they need to complete the NSCT Proton Therapy Referral form...and submit it to the panel. The panel will then decide whether the case is suitable for proton beam therapy and if so confirm back to the patient’s doctor that a referral overseas can be made [which will then be funded by the NHS].”
True, medulloblastoma does not appear on the NHS’ ‘list of approved diagnoses’ for proton beam therapy, but a recent paper in the British Journal of Radiology – held in the online NHS library – states that medulloblastoma is, “Considered ideal for proton therapy”. When the Neon Roberts story broke, the Science Media Centre did its usual thing and assembled experts to defend the mainstream scientific view; according to Professor Tim Maughan, Professor of Clinical Oncology, MRC-CR-UK Gray Institute for Radiation Oncology and Biology at Oxford University: “Recent improvements in the precision with which the treatment is delivered due to [several others and] proton beam therapy have all reduced the doses of radiation given to critical normal tissues near the cancer and this reduces side effects further. All of these treatments are available through the NHS either in UK hospitals or through the national proton beam therapy service which funds suitable patients to receive proton beam therapy at designated overseas centres”.
Clearly, then, proton beam therapy is considered an option for medulloblastoma by respected, mainstream oncologists. So why is the NHS forcing Neon to have a treatment that frequently leaves children dependent on their parents by age 30 and coping with, “Severe cognitive/endocrine disabilities”? Is it simply arrogance? Or are UK parents facing a medical system that will go to any lengths to dissuade people from resisting it?