Supporting a seriously ill student in school

This page is for school staff whose student is receiving care from the Louis Dundas Palliative Care Team at Great Ormond Street Hospital (GOSH).This page contains information that we hope will assist you in supporting the student and the school community. We have outlined some key points to consider and have tried to address concerns and queries you may have.

Maintaining some of the normal aspects of childhood can be crucially important to the overall wellbeing of even the sickest young people. School offers normality and a chance to be like everyone else. By continuing to be part of the school community, young people can maintain friendships and a connection with life outside the world of illness, helping them to feel valued as an individual. The sense of pride that comes from even small academic achievements can further bolster self-confidence and support normality and continuity.

School staff often have a key role in the lives of their students. You may be the only trusted adults they know outside their immediate family and you are experts in talking to young people and maintaining their welfare.

• It can be helpful to identify several staff members the student or their siblings can talk to if they have any difficulties while they are in school.
• A member (or members) of staff should be identified as the key liaison for the family and for health professionals.
• It is important that any staff identified feel able to take on these roles and are appropriately supported.

We will share information that will ensure staff are able to respond appropriately to the student’s medical needs. Maintaining a safe environment for the student, other students and staff, will always be a priority.

In addition, with permission of the student and their parents, we may also be able to share other information to ensure staff are confident in supporting the student.

It is helpful if you can identify a key member of staff who can be our main point of contact.

The school, together with the student and their family, will need to decide how much information is shared, with whom, by whom and how. We can help advise you on this.

There needs to be a balance between sharing important information and maintaining the student’s and family’s privacy.

Knowing more about the situation can give other students and staff an opportunity to be supportive, as well as dispelling any myths and rumours that may be circulating.

If aware of the situation, other parents within the school community will have an opportunity to offer practical support to the family.

We anticipate that the student will only be in school when they feel well enough to attend. We can help you with writing an individual health plan. Things that we need to consider are:

• Health needs they may have in school and how these can be managed.
• Medication that may be needed in school. If the student is likely to need medication we can advise you on safe storage and administration.
• Who to contact if they are unwell or you have any concerns.
• Access to lessons, for example if they need help or extra time to move between classrooms.

Some students will need time off for appointments and hospital admissions during their illness. In many cases, these will be scheduled in advance, so schoolwork can be tailored to fit around them. We can advise on coding child’s absence.

We can help advise you if the student is not able to attend the full curriculum, including participation in PE and school outings. Those attending part time will need a reduced time table agreed with the Local Education Authority.

For some students attending for break time and the lessons they most enjoy may be a higher priority than attending aspects of school they find more difficult.

Most students will not want to be identified as different, yet will need allowances made for some aspects of school life. We can help advise you on this. Examples include:

• Having more time or extra help to complete homework
• Permission to leave a lesson without having to explain why, and somewhere safe to go.
• Some students may be anxious to complete course work or important projects. It is helpful if teaching staff can facilitate this and be prepared to mark work early, particularly if a student is terminally ill.

Students with significant health needs can have allowances for their situation in public exams. This may include additional time and special consideration with marking. The latter can also apply to siblings. If either the student or their siblings are changing school, you can request that their difficult circumstances are given consideration when allocating school places. Further information is available from Childhood Bereavement UK (see Further information and support section).

This is likely to be an extremely difficult time for siblings and close friends. They may find it difficult to cope with the usual day-to-day stresses of school life and may need additional support and similar allowances to the sick student. Giving them permission to walk away from a stressful situation and seek refuge, for example in a school office, can help avoid emotional outbursts. Please discuss any concerns you have with one of our team. There may also be resources you can access through your Local Education Authority.

Even when too ill to attend school, continued inclusion in school life is often appreciated by the student and their parents. Whilst staff may be apprehensive of intruding, this ongoing contact confirms that the student, although absent, is still a valued member of the school community.

• You may want to talk to the family to find out how much contact they would like, from school staff as well as other students, and what form this should take. Options can include emails, telephone calls, visits or video conferences. Some families may still wish to receive routine letters home, others may not, but this is something that you (or we) can ask them.

Sadly, some of the young people we support will die during childhood. When a student dies, the whole school grieves. It is important to consider how students and staff are informed of a death and supported.

• Informing students of the death at an entire school assembly, or within a tutor or form group, so they receive the same news at the same time, can often keep speculation and rumours at bay.
• Close friends of the student, if not already aware of the death, should be notified prior to an announcement 
• If siblings are in school they should be given advanced warning and the option of not being present when an announcement is made.
• If possible, set time aside for students to meet in their form or tutor groups to talk about what has happened and identify an appropriate member of staff for them to talk to if needed.
• If you plan to send a letter out to other parents, please check that the parents of the deceased student are willing for you to do this and are offered an opportunity to agree the content of the letter.
• Additional information about bereavement support in school is available through organisations listed at the end of this page and can be accessed online.

Supporting a seriously ill student and their peers is emotionally draining.

• Support for staff is essential and it is important that you make arrangements for this within the school, perhaps with opportunities for groups or individuals to meet and voice concerns or share feelings.
• We are happy to meet with school staff to discuss concerns you may have. We have included a list of additional resources on the back page of this leaflet.