An important thing for family members to know is that although cancer in childhood is less common, cure rates for many childhood cancer types are high. Treatment is very well organised in specialist centres. Treatment can be challenging for children and young people, and they are likely to experience short, medium and long term consequences of treatment. Overall survival rates are 84% rising to above 90% for common Acute Lymphoblastic Leukaemia (ALL). (Cancer Research UK, 2025).
Patients are likely to be inpatients for anything from one to four weeks at initial diagnosis, during which time professionals, relatives and friends are all welcome to visit the CYP. Encouraging extended family to visit, when the CYP is feeling well enough, gives parents and carer givers an opportunity to take a break or spend time together or with the child’s siblings. Family and friends can offer practical help such as shopping, cooking and collecting siblings from school, etc.
After the initial diagnosis, the patient is discharged home. For illnesses afterwards they might be admitted to their Paediatric Oncology Shared Care Unit (local hospital). Many treatments thereafter can be delivered either as an outpatient or on a cyclical basis of brief hospital admissions for systemic anti-cancer treatments (like chemotherapy or immunotherapy), for surgery, or radiotherapy.
Families appreciate community professionals who have been involved in their care before diagnosis, making contact again after diagnosis. Sometimes before the child is diagnosed, they may have spent a lot of time in primary, secondary or even tertiary care before a diagnosis is made (Walker, 2021). Even if there has have been a delay in diagnosis, allowing this to be acknowledged and giving them space to share how they feel about any perceived delays, can help secure community support going forward.
The General Practitioner (GP) and Health Visitor (HV) are families’ consistent medical professionals long after their cancer treatment is completed. Around six months after a child or young person completes treatment, they will be asked to return to contacting their GP if they become unwell to return to normal childhood GP services. Regular follow-up appointments at the hospital will also continue. If there has been no contact between the GP and the family throughout the duration of treatment this can be a difficult transition.
Care and Treatment GP factsheet
Initial contact with the GP after diagnosis may be made by parents/ or care givers to request a fit for work / sick leave note. Health visitors and community nurses will often be involved in supplying sundries, making referrals to other agencies and emotional support. As a community professional you may not be an expert in cancer in children and young people, but you are an expert in your local area and know what help and resources are available there.
A few GP surgeries offer a flag system for families facing serious or complex challenges. This means that when any immediate family member attends the surgery they are fast tracked where possible and their circumstances are known amongst the practice employees. This can help families feel supported.
If the child or young person’s disease becomes incurable, and they choose home palliation, input from the community multi-disciplinary team (MDT), alongside the paediatric haematology/oncology team, is essential. This phase is often easier for all parties if the community team members were already involved before the end-of-life prognosis.
Clinical trials are available for most cancers in the child and young person age group. If the child is eligible, parents and carer givers with parental responsibility, will be offered the opportunity to enter their child into appropriate clinical trials and research studies.
Every family with a child or young person with cancer will have a Paediatric Oncology Outreach Nurse Specialist (POONS) or Clinical Nurse Specialist CNS key worker allocated to them. They will also be offered referral to Young Lives vs Cancer to assess their needs for social care support. This needs assessment with family may result in online remote support or having an allocated cancer specialist social worker. These are not Local Authority Social Workers and they have no statutory powers, so when a family also has a LA social worker the cancer specialist SW will bring their specialist understanding of the disease, and impacts on the family to their all round support.
POONS, specialist nurses and specialist social workers , offer practical and psychosocial information and support in person (at the hospital and if needed in the community or at home) and remotely via other preferred communication methods such as phone calls, text messages, email. The Principal Treatment Centre hospitals also have access to the full range of paediatric cancer multi-disciplinary team members including youth support workers, play specialists and psychologists who, when necessary, can work with the patient and/or their parents/carers on a one-to-one basis. Some local shared care units may also have wider MDT allied health professional support available for care closer to home.
Hospital Chaplains and Faith Leaders are also available in most hospitals and are a valuable source of spiritual support to all family members, including those with no religious belief and atheist / agnostic views. This is because facing life threatening illness can cause spiritual distress and spiritual pain. It can cause people to question the meaning in their life. (Michelson et al., 2022, Beresford et al, 2025).
A psychologist, when wanted or needed, can offer advice and intervention around emotional and behavioural aspects of the child’s care. The Psychologist will see the child or young person and their parents/carers individually or together, as required. Input can include siblings and extended family where appropriate.
Parents are given a centre specific ‘Shared care folder’ or ‘Family Journal’ before discharge. This is a file containing a vast amount of information and advice in a friendly and easy to read format It contains all the “must know” information and more. This is all explained verbally by staff in the lead up to discharge.
Over and above the essential information, medical staff take their lead from the child or young person and parents/carers as to how much information (especially written) to give them and when to offer it. There are many useful leaflets and fact sheets, as well as resources from many individual support services and disease-specific groups. Some families want all the information they can access, and others want information on a need-to-know only basis.
Parents/carers’ relationships come under a lot of psychological, emotional, practical and financial strain when their child is diagnosed, as they are pulled in different directions between the sick child and siblings, hospital, employment and home. It is helpful if the professionals around them try to encourage parents and carer givers to spend time together to discuss important decisions, support one another and allow time to catch up.
For parents and carer givers who are not together as a couple, but who have equal parental rights and responsibilities, it too is important that they both have equal access to the information and decision-making meetings with professionals. If the child or young person is to stay with different carers in different locations, then each must have the full discharge information explained to keep them safe. It is important to note any local authority input, court orders or parental contact agreements.
Parents and carer givers should be encouraged to share their anxieties and worries and are given open access to their cancer unit at all times. They should call the paediatric cancer triage helpline line 24/7 at their cancer service, if they are worried about signs and symptoms their child is experiencing during treatment.
The following information is useful for families and will have been discussed - to a greater or lesser extent, depending on family circumstances - by members of the hospital care team.
Siblings
Siblings often fear it is their fault their brother or sister got ill because they fought or were naughty. They can present with symptoms themselves and fear that they will be next. Being aware of this and speaking to them about what is going on and what their sibling is going through is helpful. It is common for siblings to feel left out, thinking that their parents and carer givers do not have time for them emotionally or physically. The sick child may be looked upon as the “lucky” one who gets all the presents and one-to-one time with parents and carer givers. Ask other family members to be mindful of siblings in their enquiries and gifts. We encourage families being as open as they can be when speaking to siblings, to tell them they can ask questions and that it is alright to be upset. It is frequently at school where children show they are upset.
The Paediatric Oncology Outreach Nurse Specialist (POONS) or Clinical Nurse Specialist (CNS), will arrange to visit the school and offer the teachers information and support, particularly when this is to discuss the diagnosis and implications of health on needs at school. When the issues around school are more related the social and emotional needs of the child, family, school staff and classmates, the Young Lives vs Cancer social workers are also available for school visits in most locations. Some centres run events for siblings, such as a Christmas party and sibling support days.
The Paediatric Oncology Outreach Nurse Specialist (POONS) or Clinical Nurse Specialist (CNS), will arrange to visit the school and offer the teachers information and support, particularly when this is to discuss the diagnosis and implications of health on needs at school. When the issues around school are more related the social and emotional needs of the child, family, school staff and classmates, the Young Lives vs Cancer social workers are also available for school visits in most locations. Some centres run events for siblings, such as a Christmas party and sibling support days.
Further helpful resources for brothers and sisters:
- Tom's Trust Sibling Toolkit
- CCLG Publication - Helping Brothers and Sisters
- Young Lives vs Cancer - cairng for siblings when your child has cancer
Resources specifically for sibling bereavement support:
Grandparents
Most grandparents worry not only about their poorly grandchild, but also how their own child will cope. Sometimes, it is not as easy for grandparents to access information first hand, and this can lead to feelings of isolation and not knowing what is happening.
It may help to explain that most childhood cancers are different to adult cancers. Children get sicker quicker than adults, but they also often get better faster.
Grandparents may take on a new and demanding job - caring for the other grandchildren, school pick-ups, driving up and down to the hospital, being “on-call” to care for siblings when the sick child needs to be admitted at short notice. This help is invaluable but as time goes on can be very tiring. We would again try to encourage a little break for them when possible.
https://www.cclg.org.uk/about-cancer/my-child-and-cancer/helping-family-members/grandparents
Friends and Partners
Other key people in a child’s life often include friends and partners. Following a child’s diagnosis, their friends and partners are often left feeling confused, worried and unsure of how to help and support, alongside experiencing changes in their relationship.
Being mindful of these children and young people and signposting to appropriate support systems can be helpful. Support systems may include; parents/carers and school staff alongside online support such as Childline and Young Minds websites.
Additional support link for Maggie’s Centres:
https://www.maggies.org/cancer-support/our-support/friends-and-family/
Page last updated November 2025
References
Beresford, B., et al. (2025) The spiritual needs and care of children and young people with life-threatening or life-shortening conditions, and parents (SPARK): a mixed-method investigation. Health and Social Care Delivery Research, 13(16). Southampton: NIHR Journals Library. ISSN 2755-0079.
Children’s Cancer and leukaemia Group (CCLG). 2014. Children and Young People with Cancer: A Parent’s Guide 2014. London, Great Britain
Cancer Research UK. 2025. Available from: https://www.cancerresearchuk.org/health-professional/cancer-statistics/childrens-cancers/survival. Accessed 14th August 2025.
Gov.uk. 2025. Parental rights and responsibilities. Available from: https://www.gov.uk/parental-rights-responsibilities
Michelson, K,N., Arenson, M., Charleston, E., Clayman, M.L., Brazg, T., Rychlik, K., Rosenberg, A,R.and Frader, J. 2022. Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer. Children (Basel). Aug 26;9(9):1287. doi: 10.3390/children9091287 (Last Accessed 15th August 2025).
Walker, D.A. 2021. Helping GP’S to diagnose children’s cancer. British Journal of General Practice 2021; 71 (705), pp.151-152. DOI: https://doi.org/10.3399/bjgp21X715241 (Last accessed 15th August 2025)