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

Sending a letter to your MP

Clock

Writing a letter to your MP can be as simple as editing and printing a sample letter 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 letter as a starting point.

Please refer to our easy guide below for instructions on sending a letter to your MP.

Stage 1:

Be sure that you know the name of your MP. If you are not sure of the name of your MP refer to the directory of MPs on the parliament web site.

Stage 2:

Download the template letter or write your own letter 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 CHILDHOOD CANCER THERAPY, DINUTUXIMAB

I am writing to you to express my concerns about the announcement that NICE has decided to deny dinutuximab, the only treatment approved specifically for the aggressive childhood cancer, neuroblastoma, to children in the UK.This decision has profound implications for children with this condition. Dinutuximab therapy is not seeking to buy extra time but to increase a child’s chance to survive and go on to live a full and normal life. Whilst antibody therapy is not a cure for all, it has been shown to significantly increase the chance of survival and children are alive today and living a full life because of this medication.

The NICE final decision was taken without paediatric oncologists on the committee and using data developed to show efficacy over two and five years extrapolated to a ten-year period. This is an unheard of use of survival data to assess efficacy for cancer drugs. It should be noted that adult cancer drugs are never subjected to such rigorous standards, which seems perverse.

NICE based their judgement on cost criteria for extended years but failed to take into account those children who will survive as a result of this treatment. Neither did they factor in that fewer than 100 children are diagnosed each year in the UK, of which only about 30 percent are able to benefit from this treatment. The overall cost to the NHS is therefore very small for the potential for a child to survive, which is priceless.

Our children will be denied this therapy whilst children in many countries in Europe and North America will receive this as the standard treatment. This decision risks pushing back advances in treatment to 2009 for children in the UK.

The term ‘a matter of life and death’ is overused, but the denial of this therapy is likely to have very significant implications for children diagnosed with this devastating illness and their families. I ask you to raise these concerns with the Secretary of State for Health and urge him to intervene to reverse this decision.

 

Yours sincerely

<your name>

Replace the <detail> text with the appropriate details regarding you and your MP. Remember to use the same text colour (get rid of coloured highlights and brackets) and to use your favourite font.

If you have the time, modify the letter 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 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:

Print the letter and put it in an envelope addressed to:

The Right Honourable <your MP’s name> MP
House of Commons
LONDON
SW1A 0AA

Stage 4:

Post it and you’re done!

Please encourage all your friends and work colleagues to do the same!

 

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

Follow us

Join our newsletter

Useful links

Contact us

Solving Kids' Cancer

Tel: 020 7284 0800

CAN Mezzanine
49-51 East Road
London
N1 6AH

Contact us

Share This