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Not all treatments and clinical trials for children with neuroblastoma and relapsed neuroblastoma are available for children in the UK when they need them. We believe the Government should ensure that treatments which are showing promise abroad are researched and adopted by the NHS as quickly as possible.
Where there is no treatment available in the UK, the child’s oncologist and family make an application for funding so the child can receive their potentially life-saving treatment abroad. However, there is no standard approach to funding treatment abroad across local NHS services.
This results in a ‘postcode lottery’, where some children are funded for treatment abroad, while most are not. Parents who are unsuccessful are then forced to launch fundraising campaigns to try and save their child’s life.
If there is no viable treatment available in the UK, we believe the Government should fund more treatments abroad and ensure that there is a standard procedure for allocating funds for the treatment for children with neuroblastoma.
Write to your MP using the suggested sample letter. A short, handwritten or printed letter is most effective, so please tailor the sample letter to include details of how you have been affected and why you care. You can find out who your MP is here: www.theyworkforyou.com.
It will make a difference! The more MPs hear about an issue from their constituents, the more likely they are to take action, so writing a letter is a great way to get your message across. For every constituent who makes the effort to write, MPs often assume there are many more people who are concerned about that issue, but don't bother writing.
Display the campaign poster at your home, workplace, on your Facebook page, Tweet it and ask your friends and neighbours to do the same. You can download a copy of the poster at this link.
Tell everyone you come into contact with about the Fairer Funding for Children with Neuroblastoma Campaign and what you are doing to make a difference for children with neuroblastoma. Ask them to help!
Download the campaign flyer here
Please contact us on 020 8203 0100 or email us on email@example.com if you would like us to email copies of the campaign materials to you, or post printed copies out to you.