This RefHelp page has been created to provide information and advice related to the latest Scottish Referral Guidelines for Suspected Cancer published by the Scottish Government in July 2025. Information has also been taken from the Children’s and Young People’s Cancer Association guidelines Information for professionals | CCLG – The Children & Young People’s Cancer Association
Death in childhood is a rare event in the developed world. However, cancer remains the most common cause of death in children aged 1-15 years, responsible for over 1 in 5 deaths of children in this age group. So whilst it may be regarded as an uncommon presentation in primary care, it is important that it is considered as a differential diagnosis in a child presenting with unexplained symptoms. Cancer is rarely preventable in childhood, but early identification is likely to reduce morbidity and mortality.
In Scotland, 31% of children aged 0-14 years with cancer were diagnosed with leukaemia, and 26% were diagnosed with brain/CNS tumours (2012 – 2021). Survival for children with cancer is high, with 85% of children expected to live for five years or more after their diagnosis.
For full details on Types of Cancer in Children and Young People
In Lothian, Children and Young People (CYP), aged 0-16 years with suspected cancer should be referred to Paediatric services. Young people over the age of 16 should be referred to adult services. (in some specialties – patients between the age of 16 and 18 are offered the choice between children and adult services).
Assessment for Suspected Cancer in Children
Studies show that children with cancer may attend multiple consultations before diagnosis.
Clinicians should ask themselves how many times has the child been seen by a healthcare professional or have sought advice for the problem in any setting..
The following features raise suspicion for a childhood cancer:
- Attendance across any pathway (e.g. A&E, NHS 111, GP) three or more times about the same problem.
- A Change in attendance rates e.g. a family that usually attend infrequently suddenly attending frequently
- Unusual or persistent symptoms, that do not respond to simple interventions e.g. antibiotics, laxatives, or a short course of steroids
- Parents or carers have persistent concerns, even if symptoms are more likely to have a benign cause.
However, it is important to recognise that frequent attendance is common in this age group and usually reflects benign or self-limiting conditions rather than serious pathology. It is essential for clinicians to balance vigilance with the broader context of frequent attendance.
An unwell child may be unwilling to comply with examination or may disguise their impairment.
A child should be examined if there is concern about cancer even if they look well.
Clinical features that can be associated with cancer in children and young people
Red flag symptoms for cancer in children and young people are listed below. These aim to support clinicians in identifying those at higher risk. However, it should be noted that most children presenting with these clinical features will not have cancer. It is not an exhaustive list – CYP often present with non-specific symptoms and can present atypically. Children often cannot express symptoms clearly, and for this reason, the level of suspicion must necessarily be kept high.
How to refer?
Emergency Referral
If a child or young person is acutely unwell and needs urgent assessment then they should be sent directly to the Emergency Department. If the GP is concerned regarding underlying cancer leading to this presentation then please phone switchboard and ask for phone number 50012 (ED consultant on-call 08.30 to midnight, registrar or ANP midnight to 8.30am)
Certain presentations related to cancer require immediate referral to ED:
- Malignant spinal cord compression is a severe, often irreversible complication of para- or intra-spinal pathology. It is rare in paediatrics but not in children with cancer.
- Mediastinal involvement with cancer (most frequently lymphoma or germ cell tumours) causing airway compromise (wheezing, orthopnoea, stridor) or superior vena cava compression (breathing difficulties, distended neck veins, facial swelling).
Urgent Referral
If a child or young person has symptoms suspicious of cancer, the majority of the time, and/or there is any doubt where, or how urgently to refer the patient, their case should be discussed with the consultant Medical Paediatrician on-call: via bleep on Lothian Hospitals switchboard 0131 536 1000 (or GP Hotline):
Monday to Friday 9am – 5pm: bleep 9250 – duty Consultant Paediatrician
Out-of-hours: bleep 9424 – duty senior medical paediatric resident doctor
They will triage the call and advise the patient to attend ED, arrange for urgent clinic review, or signpost directly to the relevant specialist as appropriate (see below).
Direct Referrals to Specialities
Consider contacting the doctor on-call for the following specialities directly via switchboard (0131 536 1000) if they have these specific red flag clinical features. Again, if there is any doubt discuss with the Medical Paediatrican on-call as above.
Eye presentations:
Papilloedema
- Headache/symptoms/signs of raised intracranial pressure – admit immediately to ED
- Well child, no symptoms/signs of raised intracranial pressure – phone acute referral line at PAEP (0131 536 3751 (Edinburgh) and 01506 524 286 (SJH, West Lothian).
- For further info see Better safe than tumour – Signs and Symptoms
Abnormal eye movements
- Urgent Sci-Gateway referral RHCYP > Ophthalmology > LI Basic Sign Referral
Proptosis
If sudden onset then discuss with PAEP acute referral line(0131 536 3751 (Edinburgh) and 01506 524 286 (SJH, West Lothian). Otherwise Urgent Sci-Gateway referral RHCYP > Ophthalmology > LI Basic Sign Referral
New Squint
Optician review in first instance
Blurred or loss of vision
Optician review in first instance
White or absent red light reflex
- Urgent Sci-Gateway referral RHCYP > Ophthalmology > LI Basic Sign Referral
Palpable abdominal mass or scrotal mass
Contact Paediatric Surgical Registrar via switchboard – wifi phone 51241
Limp
Send to the Emergency Department for assessment.
Lymphadenopathy
in association with red flags. See Lymphadenopathy – RefHelp. Phone Haematology/Oncology registrar: bleep 9290 (cross cover on-call page)
Musculoskeletal Symptoms
Focal bone pain (atraumatic)
X-ray – First line imaging investigation, particularly if there is unexplained bone pain of increasing severity, persistent pain, associated tenderness, and non-mechanical bone pain, especially if disturbing rest or sleep. If symptoms persist but X-ray is normal, repeat X-ray (after discussion with a radiologist) and consider referral to orthopaedics, urgent suspicion of cancer, especially if the patient presents 3 or more times. Spontaneous or minor trauma fracture should raise suspicion of bone cancer.
Head and neck lumps
see Paediatric neck lumps – RefHelp
Lymphadenopathy with redflags
Haematology/oncology on-call bleep 9290 (cross cover on-call page) see Lymphadenopathy – RefHelp
Anterior neck lumps
Refer ENT. Ultrasound at time of referral can help identify thyroid and other glandular masses, as well as branchial arch and thyroglossal cysts. Size matters: over 3cm is suspicious.
Scottish Referral Guidelines for Suspected Cancer 2025
CCLG – The Children & Young People’s Cancer Association | Home – very useful website for health professionals, families, children and young people.
The children and & Young People’s Cancer Association poster for professionals
