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The Guardian ran two articles on neuroblastoma on 25 August 2012, highlighting the issues our families face about accessing treatments in the UK.
Neuroblastoma Alliance UK is pleased to see the important issue of access to funding and treatments for children with neuroblastoma in the UK making the news.
We campaign for all children in the UK with neuroblastoma. Our aim is that every child gets the treatment they need, when they need it. Where treatments are not available in the UK, we support families to fundraise to get treatment abroad, at hospitals and universities who are pioneering clinical trials which are showing promising results.
The families we work with are not expecting a miracle cure, but work with their oncologists and other experts to identify the best possible treatment for their child. Often, this involves travelling overseas to take part in clinical trials at hospitals such as the renowned cancer centre Memorial Sloane Kettering in New York. These trials are not available in the UK, but are vital in building the evidence base to determine whether they should be introduced in the future.
Our families are disappointed that their PCTs routinely refuse their applications for funding, despite support from their oncologists, who recognise that these treatments are the best available at the present time. The parents believe that these decisions are being made largely on the basis of costs, although this is a misleading issue, as the costs of providing palliative care, which is the only alternative for many of these children, are also high. They are also concerned that treatments which are showing promising results abroad are not being adopted in the UK quickly enough, or even at all.
We strongly believe that the Government should work to ensure that the best available treatments are offered to children in the UK, either in our own excellent hospitals, or by funding children to access treatment abroad.
To that end, we are really pleased to note the Government’s adviser Professor Mike Richards, offering to meet with the charity and clinical experts to discuss the issues. We are holding a conference in London on 6 October 2012, with neuroblastoma experts from around the world and around 70 families from the UK and we will be extending an invitation to Prof Richards to join us at that event, to hear about the advances being made in treatments for neuroblastoma from the experts and to hear parents’ concerns at first hand.
A response from Nick Bird, Adam's Dad: