High-risk neuroblastoma is treated with intense and aggressive multimodal therapy and clinical research is ongoing worldwide to test better and kinder treatments that improve outcomes for children.

Treating high-risk neuroblastoma successfully is particularly challenging. No diagnosis is the same and patients will respond differently to multimodal therapies. Some families, working with their consultants, will explore further treatment options available within the UK and sometimes families may consider treatment options which are outside of the UK.

Providing information about treatment and clinical trials

Our Family Support Team has personal experience and truly understands. While we are happy to help families to understand treatment options with impartial and evidence-based information, we encourage all families to speak with their child's oncologist first and discuss anything treatment related with them.

Our in-depth knowledge of the global clinical trial landscape means we can help families to understand and interpret the information relevant to them and their child. One of the most effective ways we facilitate this support is through our annual Neuroblastoma Parent Education Conference. Families get the chance to learn about some of the most innovative and up to date neuroblastoma research and treatments from expert neuroblastoma researchers and clinicians.

Accessing treatment in the UK

There is a distinct 'frontline treatment' pathway in the UK that aims to reduce the size of the primary tumour with chemotherapy, remove as much of the tumour as possible with surgery, achieve remission and then try to ensure the cancer does not return.

If your child requires treatment for relapse (when the cancer comes back) or refractory (disease that isn't responding to treatment) then this could be further chemotherapy, radiotherapy, surgery or antibody therapy. But there are also clinical trial options where new drugs are being tested.

Solving Kids' Cancer is committed to providing children and young people with neuroblastoma more and better treatment options in the UK and we facilitate access to the best available treatments and clinical trials in this country. It's important to remember that these treatments have not been proven to work on children with neuroblastoma and this is why they are clinical trials.

Sometimes though, there are options for treatment that are not available on the NHS and lie abroad at international institutions. 

Accessing treatment abroad

Treatment options outside of the UK can often cost hundreds of thousands of pounds and may require significant fundraising.

Solving Kids' Cancer fully supports a parent's choice to access treatment, or not, which is their decision entirely, and we don't advocate for any specific access to treatment. If families choose a treatment option that is not available on the NHS, Solving Kids' Cancer can set up and oversee a fundraising campaign.

It helps families to ensure good governance, setting realistic fundraising targets and handling the administration - including claiming Gift Aid.

Raising funds can be very overwhelming and a huge burden on families already going through the toughest of times with their child's cancer diagnosis and treatment. We are here to support families if they are faced with the prospect of raising significant funds. 

Our experience, knowledge and network allow us to support families to access their chosen treatment. This includes:

• Connecting families with hospitals and helping them to register their child
• Negotiating the best possible treatment price
• Arranging flights and accommodation
• Providing grants to families to cover their day to day costs
• Supporting families to access the scans their child needs throughout treatment

We've been supporting families who decide to access treatment abroad since 2006. Here's Reuben who accessed the Bivalent Vaccine clinical trial in New York during 2018 and 2019.