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Brain tumours kill more children and adults under the age of 40 than any other cancer

NHS England Proton Beam Therapy Stakeholder Workshop

by Katie Sheen

As members of the public, we may sometimes wonder how the NHS comes up with its policy decisions. Yet, it is always both impressive and reassuring to see the care with which stakeholder groups are put together, to ensure that the views of patients, caregivers, health professionals, researchers and other relevant groups are all well represented. The NHS England Proton Beam Therapy Stakeholder Workshop was no exception.

In October 2018 the first NHS UK proton beam therapy centre will open at The Christie Hospital in Manchester, followed by a second centre at University College London Hospital (UCLH) in summer 2020. Since 2008, the NHS has sent eligible patients overseas to Germany and the USA for proton beam therapy. After the Christie opens in October there will be period of transition from the current NHS Overseas provision to the new UK based NHS service. This transition will exist whilst the NHS UK service develops to full capacity and is likely to continue until after the centre at UCLH opens. This workshop's aim was to explore what might be the criteria for who will be offered UK based proton beam therapy and who will be asked to travel abroad.

There were heartfelt contributions from patients and their families who have first hand experience of travelling to Germany and the USA for proton beam therapy treatment, as well as from the NHS team who currently decide, within days, which patients are eligible for proton beam therapy and then make the appropriate travel arrangements at the relevant treatment centre. There were fascinating presentations about proton beam therapy itself, including a reminder that it hasn’t been shown to be any more effective at curing brain tumours than standard radiotherapy. Proton beam therapy causes less damage to surrounding tissues, it is therefore an important option for children, whose brain and spinal cord are still developing which means they are more sensitive to radiotherapy damage than adults. It was explained certain paediatric tumours, in positions that are close to sensitive areas like the brain stem are prioritised for proton beam therapy treatment.

We wait to hear what the final NHS guidelines will be, but rest assured that the main consideration will be “at which treatment centre will a child’s tumour be most effectively treated”? After that, there are complex webs of personal circumstances to consider, ranging from basic challenges such as quickly obtaining passports and visas to enable foreign travel, through to whether the patient and their family have logistical concerns that mean spending up to three months abroad would be especially problematic.

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