Start by raising any concerns with your child’s teacher, as they know your child best in the school setting. Share information about NF1 as early as possible and request that it is shared with each new teacher. A one-page profile about your child and how NF1 affects them is a useful tool, especially in larger schools or when there are supply teachers. The SENCO can help with this.

This is a generic letter for you to take to your child’s school that explains how NF1 may affect your child 

Every school has a SENCO who is responsible for managing the education of children with special educational needs. The SENCO is the best person to discuss your child’s diagnosis and any concerns you have. They will ensure that necessary training is provided to teachers and manage any professional support your child may need.

The SENCO can also assist with referrals to other professionals, such as Speech and Language Therapists, Educational Psychologists, CAMHS, or Occupational Therapists. If you feel that the SENCO is not providing adequate support, you can escalate the issue to the head teacher or the Local Authority SEND team.

The Special Educational Needs and Disabilities (SEND) register is a record of all pupils at the school who have SEND and the support they may require. Schools are expected to closely monitor the progress of these pupils, often through Individual Education Plans (IEPs), Plan Do Review processes, or individual action plans. This is part of SEND support, with schools having a notional budget to meet the needs of these pupils.

Many children with NF1 will meet the criteria to be listed on the SEN register due to medical and educational difficulties and/or disabilities. Discuss this option with your child’s school.

An Education and Health Care Plan (EHCP) is designed for children and young people up to 25 years old who require more support than what is available through SEND support. EHCPs identify the educational, health, and social care needs of a child or young person and outline the provision required to meet those needs. An EHCP is a legal document, meaning the provision detailed within it must be provided.

An Individual Education Plan (IEP), Individual Action Plan, or Plan Do Review process describes the structured planning and reviewing process in place for all pupils on the SEN register. It details the child’s needs, the actions to meet those needs, and the review schedule. A one-page profile for the pupil should also be included, along with evidence that the child and family’s wishes and feelings have been considered. While IEPs are not legally enforceable, schools are expected to make their best efforts to follow them.