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.
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 too many of your questions herein. 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 (POONS) would be your first port of call. Each family will have a named POONS, who is their Key Worker.
How will the child or adolescent’s cancer centre support community professionals?
If you are the GP, Children’s Community Nurse, District Nurse or HV of a child or adolescent recently diagnosed with cancer, you should have received basic information from the Cancer Centre (known as PTC – Principal Treatment Centre). A more detailed Consultant letter should follow shortly thereafter to the GP and Discharge Letters will 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 (link schooling). If the patient is in hospital for a prolonged period of time, the hospital teachers or POONS will communicate directly with the school. (Link to Key things you should know about supporting a child with Leukaemia and Key Things you should know about supporting a child with a tumour)
A visit from the specialist nurse was so important, as having face-to-face contact initially meant we had confidence in dealing with the child and knowing we could contact her any time.
District nurse (CLIC Sargent Scottish Education Project report)
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 and they can move freely between these care settings. (Link to Key Things you should know about a child who is receiving Palliative care)
Approachable oncology team based in the hospital who are always willing to give advice or education. Especially our local oncology specialist nurse; easy to contact and discuss issues and concerns
Allied health professional (CLIC Sargent Scottish Education Project report)
Primary care staff can access informal support via the POONS who can arrange to meet with teams or individuals
CLIC Sargent Nurse Educators
CLIC Sargent have recently (March 2017) invested in a new role to support health care professionals supporting children with cancer: the Nurse Educator.
There are currently 19 Principal Treatment Centres (PTC) in the UK. A PTC is a centre where a child will be diagnosed with cancer and the treatment plan decided. Depending where the child lives in the country they may go to the PTC for all of their cancer treatment. In some parts of the country cancer treatment can be given at a shared care hospital.
A paediatric oncology shared care unit (POSCU) is a hospital nearer to the child's home e.g. District General Hospital. The POSCU works in partnership with the PTC, to offer the child supportive care closer to home e.g. blood transfusions, antibiotics, blood tests. Some POSCU give chemotherapy, as prescribed by the PTC, too. The services available at POSCU in different parts of the country vary but they all offer valuable supportive care to families closer to their homes.
Many children with cancer also receive care in their homes. This could be from staff of 'outreach' services from the PTC, POSCU or staff from children's community nursing teams (CCNs).
The POSCU and CCN are ‘generalist’ services i.e. they offer care and support to children with diverse health needs e.g. asthma, diabetes, general surgery. The staff at POSCUs and CCN are very skilled and enthusiastic about caring for children with a whole range of health needs including cancer. However they may not care for children with cancer every day so it is important that they work closely with the PTC to maintain their knowledge, skills and confidence in this speciality.
The Nurse Educators will work with PTCs, POSCUs and CCNs to identify any areas where the support offered to children with cancer closer to home, or at home, can be enhanced so that the teams can confidently use the skills they have to care for children with cancer. For example by offering more regular skills update sessions for the staff (nurses, doctors, play specialists, etc.) at POSCU/CCN team.
The Nurse Educator has an honorary contract with the local PTC to ensure her/his clinical knowledge is up to date. The Nurse Educator works with the various professionals to understand where she/he can best offer educational support. We are also keen for families, children and young people to give feedback on local needs. This can be done at any time by completing the CLIC Sargent feedback form.
The first Nurse educator will act as a resource for health professionals in the North of England and then further posts will follow around the UK.
Further resources
Cancer in children and young people e-learning course
This course will support GPs, GP trainees, nurse practitioners and allied health professionals in being able to identify signs and symptoms which could indicate a malignancy ina child or young person.
NHS courses
Sage and thyme training Sage and Thyme training; offering staff a structured approach to how to manage difficult conversations whilst allowing the conversation to be patient-led.
NES – Education and training body for NHS Scotland Half day study day on managing challenging behaviour for staff.
NHS England Advanced Communication Skills Training
Self-directed web sites
Managed Knowledge Network Psychology Pages with further useful information.
Moral Map An interactive website with many moral and ethical situations for consideration that allows you to gain insight into your stress points.
Steps for Stress Self help for anxiety, low mood etc.
BPS Guidelines for management of distressing procedures There is a small cost to buy these.
The Happiness Trap Mindfulness based resources, Acceptance & commitment therapy:
Cognitive behavioural therapy self-help
For help with more generic personal stress and feelings of anxiety, the NHS Occupational Health offers a confidential counselling service for all staff.