You Know Them Best childhood cancer campaign

The Grace Kelly Childhood Cancer Trust has launched a national public awareness campaign, You Know Them Best, to highlight the early signs and symptoms of childhood cancer. The campaign runs until the end of February, but all resources will remain available afterwards.

Developed by GPs and peer reviewed by paediatricians, oncologists, GPs, and public health professionals, the campaign is designed to support timely diagnosis in primary care without increasing inappropriate consultations.

What this campaign asks of GPs

• Keep childhood cancer on the differential diagnosis when symptoms persist, recur, or do not fit a benign pattern
• Be explicit with safety-netting and follow-up
• Take repeat presentations seriously
• Refer early when something does not feel right

Why early diagnosis matters

• Over 4,000 children and young people are diagnosed with cancer each year in the UK.
• Childhood cancer remains the leading disease-related cause of death in children.
• Five-year survival is now around 84%, but outcomes in the UK lag behind many comparable European countries, thought in part to reflect delayed diagnosis.
• Earlier diagnosis improves survival and reduces the need for aggressive treatment, which can leave long-term physical and psychological complications.
• With more than 40,000 childhood cancer survivors now living in the UK, every general practice is likely to have survivors on its list.

At present, there is no national public campaign covering the full spectrum of childhood cancer symptoms. This contributes to gaps in awareness and delayed recognition.

Understanding the pressures in primary care

This campaign has been written by GPs, for GPs, with a clear understanding of the workload and diagnostic complexity in primary care.

The aim is to educate families to present appropriately, not to trigger a surge in consultations. Resources for clinicians are concise, practical, and focused on red flags and repeat presentations. While childhood cancer symptoms often overlap with common childhood illnesses, the campaign distils the information to the key features that should prompt concern.

Key clinical points for GPs

 Be explicit in safety netting:

• Give clear timeframes for review.

• Ensure families know when and how to return if symptoms persist or worsen.

Red flag symptoms in more detail:

• Pallor, persistent exhaustion.

• Persistent or recurrent pain anywhere, especially at night (beware of slow to resolve injuries).

• A persistent or growing mass, lump or swelling anywhere (note about lymphadenopathy here about when to be concerned)

• Unexplained bleeding or bruising anywhere. Beware of haematuria, old blood appears like cola, patients may say urine looks dark.

• Diplopia, a new squint, or unequal colour or appearance of the eyes. [ leukocoria (pupil looks grey, white, silver or yellow) or an unequal appearance of eyes. A unilateral change in iris colour can occasionally also occur.

• Persistent or recurrent pyrexia with no obvious source of infection.

• Parental concern

• Three or more attendances (can increase the chances of it being cancer by up to 10- fold (Dommet et al).

Other symptoms

• Nausea, vomiting, recurrent headaches (signs of increased ICP)

• Unexplained changes in mood, behaviour or slow development

• Persistent change in bowel habit

• Unusual body movements, ataxia, a new limp

• Unexplained weight loss, slowed growth, precocious or delayed puberty

• In teenagers especially:

  • Change in appearance of moles

  • Lumps in breasts / testicles

If in doubt, consider referral. Always ask:

“How many times has your child seen a health professional about this problem?”

(Children may have already seen dentists, school nurses, or opticians without this being recorded in GP notes.)

Resources for GPs

Educational resources for clinicians are available from the Grace Kelly Childhood Cancer Trust:
https://www.gkcct.org/medical-professionals/publications-and-resources/gp-education-and-learning-resources/

There is also a GatewayC e-learning course for GPs on the early diagnosis of paediatric cancers:
https://www.gatewayc.org.uk/courses/paediatric-cancers-early-diagnosis/

About the Grace Kelly Childhood Cancer Trust

The Grace Kelly Childhood Cancer Trust is a UK charity dedicated to improving outcomes for children with rare and aggressive cancers. The Trust funds research, educates families and clinicians about the early signs and symptoms of childhood cancer, and produces clear, accessible information to help families understand diagnoses and treatments. Through its face-to-face family support service, the Trust also provides practical, financial, and emotional support to families affected by childhood cancer.

The Trust has distributed more than three million signs and symptoms awareness cards across the UK and works in partnership with organisations such as the Institute of Health Visitors to develop tailored resources and training. Its educational content has reached over 44,000 GPs and nurse practitioners through Red Whale updates and features in RCGP e-learning, Paediatric PEARLS, and InnovAiT. The Trust holds both PIF TICK accreditation for trusted health information and AMRC accreditation for high-quality research, and has partnered in the development of new e-learning on childhood cancers with Clarity C and the Children’s Cancer and Leukaemia Group.

Final message

Childhood cancer is rare, but the consequences of delayed diagnosis are significant. Keeping it in mind when symptoms persist or something “just doesn’t feel right” can make a life-changing difference.

Together, we can help ensure children and young people receive timely diagnosis and treatment.