Sally Roberts’s open letter to David Cameron


I’ve covered the shocking case of Sally Roberts and her son Neon in two previous articles, here and here.

Briefly, 7-year-old Neon was diagnosed with a brain tumour in October. His mother was extremely alarmed after a doctor told her that treatment would involve “frying his whole brain” with radiation, and wanted to look into safe treatments.

But in December, a High Court judge took away her right to, ordering that Neon would begin radiotherapy this month – which he now has.

Last Friday, Sally Roberts sent the following open letter to Prime Minister David Cameron, copying in over 100 other politicians. Please read it, and consider donating to the fund set up in Neon’s name to raise money to mount a legal challenge to the High Court decision – details here.

Sally Roberts recently discovered that there is a much safer and more targeted form of radiation treatment known as proton beam therapy. This is what the National Health Service (NHS) had to say about it on its own website:

“Proton beam treatment can be a more effective form of therapy because 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.”

It’s not available in the UK, but since 2008 the NHS has been sending select patients overseas for it. Yet it refused to do so in Neon’s case. Instead, says Sally Roberts in the letter, he is not only having a riskier form of radiotherapy against her express wishes; the NHS has enrolled him, also against her wishes, in a clinical trial. The letter…

Dear Mr Cameron,

As a last resort, I am writing to you in your capacity as the ‘leader’ of our country and as a ‘parent’ – who loves his family above all else.

You may have read my case recently headlined in the national news; as the mother whose son ‘Neon’ (diagnosed with Medulloblastoma – brain cancer), was recklessly putting his life at risk by rejecting orthodox treatments in favour of alternatives. The truth is; my son was stolen from me by the National Health Service via a Court Order – to be forced to take part in a clinical ‘cancer trial’ programme (PNET Trial – Packer Cystplaton, ccnu, vincrustine).

As you know, the National Health Service have made serious errors of judgement in the past, and it is for this reason that I refuse to sit back and watch my son become another ‘failed’ national health statistic.

I believe what has happened to me was a deliberate ‘witch hunt’ orchestrated by the Pharmaceutical Industry, abetted by the NHS (under the guise of protecting Neon), because I mentioned the words ‘Alternative & Complementary Treatments’, to hopefully give him a better chance of long term survival. However, as a mother, my responsibility is to shield my son from any immediate or potential harm; this is all I have tried to do… and will continue to do. The NHS started Neon on a 6 week course of XRAY Radiation on 10 January; followed by a course of Chemotherapy from 11 January; both of which falls within the above ‘PNET programme’.

From the beginning, I’d vehemently objected to Neon being used for ‘testing experimental drugs’, when there are known, tried, tested, safe and effective options available. To make matters worse, I’ve been kept completely in the dark, as to-date, despite regular requests, letters and emails, the NHS have refused to provide or confirm his treatment plan. To add to this nightmare, Neon is not doing very well, symptoms include – pale complexion, uncoordinated, loss of appetite, losing weight, forgetfulness and chronic fatigue.

Mr. Cameron on 24 October 2012, my heart was ‘torn apart’ when I was first told that Neon had brain cancer, but now it’s being ripped to shreds helplessly watching him suffer, knowing that the power to help him  has been forced out of my hands. Even the close bond and trust we had is quickly slipping away, due to the separation and confusion surrounding his care.

Mr Cameron, I know you have the entire country on your shoulders, and that Neon is just but one of many children with a serious health condition, but as his mother, ‘he is my priority’; therefore I must implore you to PLEASE intervene to save him before it’s too late.