Of all our blog posts - this is one of the most important yet. When you have 10 minutes, please take the time to read and digest.
It has been incredibly difficult to see the way the media has portrayed the most recent Lancet Report on Proton Beam Therapy. Lets just be completely clear. This is not some magical treatment that will be the answer to all parent's prayers who have the unenviable task of making decisions how their child should be treated for brain tumours. Proton Therapy is still a radioactive treatment. While it is very good news that the UK will be having Proton Machines (and we should have had them a long time ago,) it is incredibly dangerous to place all brain tumours in the same bracket. Even the most common Medulloblastoma which Skye had, can be sub-categorised four times over and needs to be treated differently in order to strive for a cure.
Paediatric Consultants in the UK do an exceptional job despite being hamstrung by many system related obstacles. Any parents finding themselves having to navigate their way through the world of childhood brain tumours should keep faith in their consultants, but certainly feel able to question and share in every decision that is made as these are decisions are ones that will remain with them for the rest of their lives. There are system failures, which need to be urgently addressed however.
The system failures, need addressing as a matter of urgency.
CLINICAL TRIALS vs STANDARD TREATMEMT GUIDELINE
Children who are diagnosed with cancer in the UK are currently placed on one of two different treatment plans. One option is in the form of a Clinical Trial. Here there is a Chief Investigator who has an oversight of the entire Trial and in each Centre there is a Principal Investigator who has a responsibility to submit in writing any adverse events within 24 hours of their occurrence. If no Clinical Trial is open for a particular tumour type, the child is placed on a Standard Treatment Guideline Protocol where there is no such mechanism for feedback on treatment, and it simply relies on the diligence of the clinicians to share data with each other and that can take far too long during a critical time when children are fighting for their lives.
The Milan Protocol (STG)
The severity of this aspect of care can be illustrated using the example of the standard treatment Milan Protocol, which was billed to us as offering the best cure rate for our son Skye’s type of tumour. This protocol comprised of, amongst other treatments, twice daily (hyper-fractionated) radiotherapy and a high dose of Thiotepa chemotherapy. When we approached consultants from around the world including Dr Torunn Yock responsible for the most recently published Lancet Report and Dr Roger Packer, we were told that Proton Therapy could not be given twice daily and if we opted for Proton Therapy, we would not be able to follow the Milan Protocol. At this time, the Milan Protocol, devised from a single centre study, was presented to us as the UK’s standard guideline treatment due to it having superior cure rates to that of other protocols and therefore our decision was made based on the fact that opting for protons would not have allowed Skye the best possible chance of being cured.
There had however been misgivings about the efficacy of the Milan Protocol for a lengthy period of time prior to Skye commencing treatment but we were not made aware of this. This is just one example of a number of standard treatment protocols for which there is no formalised data collection system currently in place in the UK where clinicians can immediately and reliably share information such as acute side effects and outcomes from treatment.
The Milan Protocol was withdrawn from use in the UK after Skye’s diagnosis of chemoradio-neurotoxicity was flagged up by his consultant to other clinicians, but had there been a more robust systematic collection of data, discoveries and amendments could have be made much quicker.
There was also a general feeling among clinicians, that because of the very nature of the accuracy of proton treatment, this may not prove as effective as conventional radiotherapy, thus having an impact on cure rates. It is yet to be determined if this will have significant impact on children who fall into the high-risk, metastatic medulloblastoma category.
Medicine is not black and white. We will constantly learn and refine or dramatically change treatment. Which will only happen through funding research. While it is fantastic news that the UK will be getting Proton Machines, we must stay mindful to the bigger issues particularly surrounding the number one cancer killer in children and encourage the leaders of our country to address the need for a formalised data collection system to be implemented as a matter of priority and not rely on ‘make shift’ data collection systems which have been implemented internally as a direct result of tragedies as in our son's case. The way funding is apportioned within cancer care as a whole is also important but that's a whole other story... http://www.telegraph.co.uk/news/health/children/12140533/We-need-to-think-about-how-we-fund-childrens-cancer
Your continued support is much appreciated as we address the Data Collection issue with the NHS and CCLG Chief Executives. We have been working behind the scenes on this with keys players and feel now is a good time to bring it into the public eye.