Working with a child or young person and their family with a cancer diagnosis can cause feelings of anxiety, particularly if this is not your speciality. The following information is written to offer some advice and signpost you to further resources you may find helpful. There is a separate section that describes the support offered to families. (link in notes)
It is helpful to remind ourselves that what helps the child or young person and their parents/carers is our professional manner, an appearance of confidence, helping where we can but acknowledging when we cannot. If you are seeing a family in the community, they will understand that you cannot possibly be an expert on the illness the child or young person has and therefore will not have answers to all their questions.
If you do not know something, say so, then reassure the family that you will find out and back that up with action to maintain trust. This resource has been designed to cover many aspects of cancer in children and young people and we hope you will find answers to many of your questions in here. There are links to further reading on most pages.
For the family of a child or young person with cancer you are, however, an expert on your local resources; on how things work close to home and what help may be available to them.
However, in the event of questions or queries, the family’s Paediatric Oncology Outreach Nurse Specialist, Community nurse or Clinical Nurse Specialist would be your first port of call. Each family will have a named nurse who is their Key Worker. (Link to PTC /Shared care information)
How will the child or adolescent’s cancer centre support community professionals?
If you are the GP, Children’s Community Nurse, District Nurse or Health Visitor of a child or adolescent recently diagnosed with cancer, you should have received basic information from the Principal Treatment Centre. A more detailed Consultant letter should follow shortly thereafter to the GP and Discharge Letters should be sent after every admission.
If the child or young person is on a clinical trial, information about this will also have been sent to the GP.
The POONS will keep in touch with members of the multi-disciplinary team (MDT) involved with an individual child or young person as necessary and can visit professionals in the community. The POONS will also contact and visit the school before the child or young person’s return. If the patient is in hospital for a prolonged period of time, the hospital teachers or POONS will communicate directly with the school.
If a child or young person requires palliative care, a primary care team meeting will be organised for the GP surgery. At this point, if they are not already involved in their care, the community nurses would be invited to attend. The child or young person’s cancer team and the POONS would remain involved throughout. Children and young people are always given the option of care at that stage in their home, hospice, or hospital. (Link to section 8 – Palliative care OIR).
Primary care staff can access informal support via the POONS who can arrange to meet with teams or individuals.
Links to helpful resources:
Advanced Communication Skills Training NHS England
https://www.england.nhs.uk/north-west/north-west-coast-strategic-clinical-networks/our-networks/palliative-and-end-of-life-care/for-professionals/education-and-training/
NHS: Dealing with stress: https://www.nhs.uk/every-mind-matters/mental-health-issues/stress/
Kooth – Therapeutic support and mini activities to boost your well-being. https://www.kooth.com/
Cognitive Behavioural Therapy self-help:
NHS Better Health, Every Mind Matters. Available from: https://www.nhs.uk/every-mind-matters/mental-wellbeing-tips/self-help-cbt-techniques/
NHS talking therapies for anxiety and depression https://www.nhs.uk/nhs-services/mental-health-services/find-nhs-talking-therapies-for-anxiety-and-depression/
For help with more generic personal stress and feelings of anxiety, the NHS Occupational Health offers a confidential counselling service for all staff.