Starting a new school year can often be a challenging time for any pupil and family. This can be made harder when the pupil has a chronic (ongoing) health condition. To get the most out of their schooling, pupils with a chronic illness need stable and coordinated support from their families, schools and medical carers. The family and the school also need to be clear about what can, and cannot, be done so that everyone’s expectations are achievable and realistic. The following information is geared towards helping parents in approaching the school about a chronic illness.
why is it important?
Students with a chronic illness may have several periods of absence from school through various medical appointments, hospital admissions and recuperating at home. These spells of absence can begin to build up and have a knock-on effect leading to:
- Gaps appearing in their knowledge of the syllabus and curriculum
- Difficulty completing work on time or taking part in exams
- Decreased academic performance
- Difficulty maintaining relationships with school friends
- Concerns with mobility within school facilities
- Difficulty participating in some school activities (ie sports or trips)
- Feeling less confident and less motivated (potential impact on self-esteem and body image)
As always, the information on this page is geared towards a UK audience, making reference to UK policies and guidelines. There are likely to be similar protocols in other countries.
DISCUSSING THE CONDITION WITH THE SCHOOL
Don't be afraid to tell the school about your child's condition. Some parents worry about sharing this information, but the more informed teachers and other school staff are, the better prepared they will be to help your child. If the school staff don't have all the facts, they may make wrong assumptions about your child's behaviour or performance. Section 100 of the Children and Families Act 2014, places direct statutory duty on governing bodies of educational organisations to make arrangements to support pupils with medical conditions. In layman’s terms- the school must make all reasonable adjustments to help the pupils achieve their full potential in school.
If you are the parent or guardian of a school aged pupil with a chronic illness, or if you are a pupil living with a chronic condition, you must contact the school to discussed how it will be managed. A meeting should be held between pupil (if age appropriate) parent/guardian, main form tutor/class teacher, the head of the pastoral team at school and possibly any health professionals who work at the organisation (school doctor/nurse). Prior to the meeting, it would be useful to discuss with your GP or consultant how your child’s condition could be managed during the school day. For example, it may be possible to prescribe medicine for your child that can be taken before and after school, instead of in the middle of the day.
Within this meeting, it important to discuss
- The medical condition including triggers, signs, symptoms and treatments.
- Precisely what help the child needs to manage their condition; what they can do themselves and what they need from another (including supervision).
- Who in the school needs to be aware of the child’s condition and which staff will be available to provide support to the child.
- If your child will need to take medicine at school, ask about the school's policies for storage and self-usage.
- The written permission from parents and the head teacher for medication to be administered by a member of staff, or self-administered by the pupil.
- Any side effects of the medicines
- What constitutes an emergency and what to do, and not to if one occurs
- Any specific support needed around the child’s educational, emotional and social needs, e.g. management of absences, support for catching up with lessons or any counselling arrangements.
- What to do in an emergency situation, including whom to contact.
- The pupil's practical medical/mobility requirements e.g. locker space/getting upstairs.
- What plans need to be put in place for exams or assessments, school trips (including residential) or other extracurricular activities.
Whilst this may seem like overkill with the amount of information you need to discuss, it is important not to miss anything out. A teacher supervising the pupil will need to have as much information as possible in order to provide the highest level of care. With all the information available to the school, they are able to fully understand and assess the condition for further support.
It would also be useful at this point to discuss access to counselling or similar emotional support to give your child a safe space to explore and learn to cope with their feelings surrounding chronic illness.
INDIVIDUAL CARE PLANS
If the chronic condition affecting the pupils is deemed to be recurring, fluctuating, long-term or complex, a decision should be taken on whether an Individual Care Plan is necessary for the ongoing support of the pupil. Individual healthcare plans provide clear and concise information about what needs to be done, when and by whom in order to support a child's medical condition.
Whilst the parents/guardians, pupils and healthcare professionals will be consulted, the Head Teacher takes the final decision as to whether an individual healthcare plan is suitable. If the proposal for an ICP is accepted, then those who were consulted, will be asked to help draft the document. Once the plan is drawn up, it is for the school to make sure that it is accessible and that relevant information is communicated to all staff who have care of your child. This plan should be reviewed annually or whenever there is any significant change to your child’s condition or treatment.
MEDICAL SUPPORT POLICIES
Any school, college or educational organisation is expected to have regularly reviews policies for supporting pupils with medical conditions. These policies should be all be accessible to parents and school staff and can often be found on the school’s website.
The policy should recognise the impact illness can have on a child’s ability to learn and develop, and make clear that every child with a medical condition is different and should be treated as an individual. Other information that you should expect to see in the policy includes:
- The procedures to be followed whenever a school is notified that a pupil has a medical condition
- The procedures for managing prescription medicines at school
- The named member of staff who has overall responsibility for the implementation of the medical policy
- The roles and responsibilities of all those involved in the arrangements
- How staff will be supported in carrying out their role to support pupils with medical conditions, and how this will be reviewed
- The arrangements for older children who may be capable of managing their own health needs and medicines
- The role of individual healthcare plans and the person responsible for their development
- The contingency plans for emergency situations
- How to facilitate the child’s participation in school trips and visits, or in sporting activities, and not prevent them from taking part
If you feel that the school’s policy does not cover all of these points or if you are unsure of any of the contents, you should always ask. Good schools want to ensure that the communication between classroom and home are as clear as possible and it is therefore in their interest for you to clearly understand anything related to your situation.
COMMUNICATION BETWEEN CLASSROOM AND HOME
Regular communication between the school and the family is the best way to monitor how your child is coping both at school and at home (academically, socially, physically and emotionally).
For younger children, writing daily messages in a home-school communications book may help. The pupil can be involved in this with a system for them to rate their day and mention things that they felt went well and things that they would do differently etc. If a child is made to feel part of the conversation about their condition, they are more likely to interact with the illness in a positive manner (i.e. seeing it as a condition and not a definition).
The most important thing to remember is that, at any stage, the teachers interacting with your child are all fully trained and experienced in helping and supporting a child with additional needs. They are already keeping an eye out for any concerns and, with the knowledge that the pupil may need extra support, will monitor more closely. If you do not hear from the teacher as often as you feel you would like, speak to them about scheduling a weekly discussion or email with a synopsis of the week. If you have agreed that the teacher will get in touch with you when there are any concerns, it is entirely probable that instead of forgetting to contact you, there is simply nothing worrying to pass on. Whilst it’s hard to step back, having been the sole care provider, you must trust that your child’s school and teachers are all working to make things as easy as possible.
Whilst secondary school can be an upheaval and difficult at the best of times with puberty, hormones and emotions racing; it can be far more difficult for those pupils who are coping with a chronic condition. From body image, through friendship groups, to exam stress, it is a time in life when pupils may feel out of control of their situations. It is therefore IMPERATIVE that constant communication is maintained between school and home. It is only through this communication that changes in mood, energy levels and their coping limits can be carefully monitored. Depending on the competence of the pupil, it may be relevant to include them in this communication.
This said, whilst it is wholly understandable that you want to be informed of everything going on within your child’s day to day life, they may need you to factor in a little bit of space for them to test how to push their boundaries. Speaking to a number of teenagers coping with chronic illnesses, they have all brought up the same topic of trust and independence. It can be incredibly hard to see your child doing something you wouldn’t advise, but is only through this experimentation that they will learn their own limits and prepare themselves for university and beyond. There was a strong sense of agreement that, with additional independence, your child will be more comfortable in speaking to you about their concerns and the condition if they feel that there is a greater level of trust and they are not being ‘sat upon’.
In the scramble to manage the sick child’s needs, healthy siblings can feel enormous disruption and loss as well. Fortunately, with proper notice, this can be one of the best opportunities for school to help. Speak to your children’s class teachers or heads of year about the current situation at home and they will ensure that they keep an extra close eye on the development of the siblings. Whether with counselling, after-school activities, or just time to play and be children, school is a place where siblings can find masses of support outside the home.
SCHOOL SOCIAL LIFE
If your child has a chronic flare up leading to prolonged periods of absence, it can cause a sense of both academic and social isolation. This in turn can impact upon a child’s mood and potentially cause anxiety and additional stress about returning to school after their recuperation. Maintaining ties with classmates and teachers can help your child retain a sense of normality during this time. Online social networking sites, email, text messaging, and (if they’re up to it) talking on the phone can help the pupils stay connected. If you are aware that your child may be off school for a while, you could speak with teachers to encourage a letter-writing or email campaign from classmates. Your child might even be able to Skype or FaceTime into a lesson at school over the computer if the school has this facility.
Away from school you could arrange for visits from your child's friends and, if the doctor says it's OK and your son or daughter is up to it, encourage him or her to attend school plays, sports events, classroom parties, and other social gatherings. Staying connected will make for a smoother transition socially, emotionally, and academically when your child returns to school.