Has your child been affected by neuroblastoma? Call 020 7284 0800 for help and information.

Writing to your MP

Writing to your MP is simple and can be done in as little as 5 minutes. However, if you have more time to spare, we would encourage you to express your views in your own words even if you use the sample text as a starting point.

Here’s how:

Stage 1:

Be sure that you know the name of your MP. If you are not sure, you can look them up here in the directory of MPs on the parliament web site.

Stage 2:

Download the template email or write your own email using the following example as a guide:

<your MP’s name> MP
House of Commons
LONDON
SW1A 0AA
<date>

Dear <your MP’s name>

NICE decision on children’s cancer drug

I am deeply concerned at NICE’s recent draft decision not to recommend a life-saving drug for children with neuroblastoma, called dinutuximab beta, for use on the NHS.

Given at the end of standard treatment, this is the best chance of long-term survival for children diagnosed with high-risk neuroblastoma, which is a rare childhood cancer. This decision leaves the UK lagging behind other countries in Europe and North America, where experts agree that this drug is an important part of treatment and is already standard of care.

This drug is being judged with a one-size fits all approach, and the system is simply not fit for purpose. It doesn’t take into account the nature of neuroblastoma and any of the unique challenges and considerations that exist within rare children’s cancers. Despite involving the most intense treatment regime of all cancers, only 1 in 3 children diagnosed with high-risk neuroblastoma survive. In the UK, a child dies from the disease every 10 days on average.

Families are entangled in a system that forces them to raise hundreds of thousands of pounds for their child to access treatment overseas. This puts an enormous emotional and practical strain on families.

[If you have personal experience of neuroblastoma, please add 1-2 lines here to express your experience]

The Department of Health, NHS England and EUSA pharma must come together urgently to find a solution that doesn’t put children’s lives at risk. Every new child who needs dinutuximab beta must receive it for free in the meantime.

I urge you to write to Jeremy Hunt MP and Steve Brine MP and raise this as a matter of urgency. We owe it to these vulnerable children to give them the best chance of survival.

Best wishes,

[Add your name]

[Add your address or location – so the MP knows you are one of his or her constituents]

Replace the <detail> text with your and your MP’s details.

If you have time, modify the email to give personal examples or express the points in your own words. It is always better to give examples from your own experiences and locality if possible. If not, please remove this section.

If you have any problem downloading the letter or need any further help or information, please contact Claire at Solving Kids’ Cancer at claire@solvingkidscancer.org.uk.

Stage 3:

Email the letter to your MP. You’re done! Please encourage all your friends and work colleagues to do the same!

On behalf of Solving Kids’ Cancer, thank you for your help.

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