With the imminent opening of the Proton Beam Centre in London 2020, what better to write my first post about?
In 2013 my child was blocked from having proton beam therapy by the NHS. We were prevented from accessing the treatment I had set in place for him in Virginia, USA. https://www.sahcare.com
The choice was taken out of my hands. Slammed with a court order and frog-marched into X-ray radiotherapy, all I could do was watch in horror and hope for the best.
Easier said than done when it’s your one and only son they are treating with radiation, despite my desperate attempts to have my son treated overseas with a more advanced therapy. After all, radiation is known to be deadly. It can cause secondary cancers and comes with a long list of “usual” dismal debilitating side effects.
Quality of life was always the biggest part to play. I harped on about it and it was mentioned in court by the NHS. Of course I wanted the best outcome for my child, that is why I questioned the proposed protocol and searched worldwide for a safer option.
Throughout my kangaroo court case whilst fighting for a better clinical deal for my child, it soon became obvious it was the conventional way, or (you guessed it) the conventional way. So when I found an orthodox method with fewer side effects, I pushed for it, but Neon was denied his human right to access the proton beam and soon the side effects of the grueling radiotherapy treatment took hold.
To go onto and read PROTON THERAPY UK TARGETING QUALITY OF LIFE makes me feel a little queasy. Can you imagine my frustration? Why was my son denied this advanced technology when it was already in the pipeline? The initial UCLH proton project inception was in 2007 according to when clinical leads were invited to join, long before 2012!
Considering how my case was scrutinised, some may remember how I was treated by the mainstream media who were remarkably mute on my main matters of concern: long-term consequences primarily caused by the radiotherapy.
At any cost, I wished to avoid reducing my son’s quality of life by needlessly subjecting him to the X-ray radiation treatment which would undoubtedly cause him some degree of neuro-cognitive psychological and developmental problems.
That proton beam was already proven to be the up and coming treatment and would not cause him as much harm, I would ultimately (above all else) love to know why Neon was prevented from accessing with this more precise technique?
If you are going down the conventional cancer treatment road, who wouldn’t opt for a more accurately targeted beam of the area being treated, rather than scattered X-ray radiation particles flying at you from every angle. I cannot stress the importance of this intense process when you are talking about irradiating the brain and spine of a seven-year-old child. With less collateral damage and lower radiation exposure to healthy tissue surrounding the treatment area, it’s no wonder I opted for this newer therapy, at the time, relatively unknown and unavailable in the UK. However, Neon’s treatment team did not agree and would not release him and prevented him from receiving the less invasive treatment.
Fast forward (seven years later) to 2019 where one can look online at UCLH (the same hospital my son was treated) and read, “UCLH is at the forefront of developing cancer care. We are bringing the world’s most advanced form of radiotherapy, proton beam therapy, to the UK.”
tells us about why the PBT centre was built at UCLH.
In 2011 the coalition governs made a decision to develop a national proton beam therapy service as part of its Cancer Strategy (Improving Outcomes: A Strategy for Cancer (Department of Health, 2011)). This strategy was followed by a strategic outline case, which set out why proton beam therapy should be provided in the UK and supported by a government investment (The National Proton Beam Therapy Service Development Programme, 2012). The Department of Health then ran a process to decide where it should locate the national proton beam therapy service.
With all of this in mind – why did the professor of radiology and body of oncology clinicians, dutifully prevent Neon from having proton beam therapy in 2012? Instead forcing him to receive the outdated X-ray radiation, while doing nothing to reduce the side effects (no complementary/immune boosting therapies). The radiologist and his team had surely caught wind of PBT and had knowledge of what was coming? The X-ray radiologist did tell me he was familiar with the proton expert I was in contact with in Virginia but insisted“there was no clinical benefit over protons to photons”, and treated my son with X-ray radiotherapy, against my wishes.
Some may ask, but isn’t PBT just another form of radiation? I recently read an article written June 24, 2019. Proton Beam Therapy: Medical Marvel or Harmful Hoax.
To summarise: “When it comes to radiation therapy, most doctors are essentially offering a “scorched earth” option. It’s like burning your house to the ground to deal with a pest infestation. This approach is counter-intuitive and causes more harm than good. But proton therapy is a different beast altogether,” Ty tells us. “The risk of severe side effects is two-thirds lower for proton therapy than conventional radiation.
This is a huge topic and I could write so much more but for the purpose of this post, I will wrap it up here. If you would like to be kept updated with my future posts, please subscribe to my newsletter at