Starting nursery and school is an exciting time for all children.  On this page you will find resources to help you make a confident start with your child’s education.

Communication with school or nursery

Before your child starts school or nursery you will need to explain that your child has a medical condition that needs accommodating.

Individual healthcare plans (IHP) are developed to help school staff understand what a medical condition means for a child at school.  It is a document which describes the condition, treatment and how it might affect the child at school. It should be drawn up by the school with input from parents/carers and health professionals (such as your child’s dietitian).

Individual healthcare plans are a practical and common-sense idea. It is also possible to adopt a more informal approach – for example writing your own plan and following this up with a face to face meeting with key staff. The important thing is that the school understands PKU, how to manage issues that might arise and how to keep in communication. You should seek guidance from your hospital dietitian/medical team about this process and any concerns you have.

Downloadable resources:

 

We have additional documents which are available from the helpline.  Contact us for details.

Nursery:

  • A sample individual healthcare plan for nursery
  • List of snacks for nursery

School:

  • A sample individual healthcare plan for school.
  • List of snacks for older children

Information for schools and nurseries catering for a PKU diet:

  • Suitable meals for low protein diet
  • Blank menu for parent to hand in to school with choices
  • Suitable snacks for school break or breakfast club

Special educational needs / problems with progress at school

Children with PKU typically have standard educational goals .  However, research suggests that children with PKU may have an increased risk of learning problems at school.  This may include difficulties with working memory, processing delay, sustained attention, executive function and social functioning.

If you have concerns about your child’s progress at school (or if this is raised by your child’s teacher or Special Educational Needs Co-ordinator) you should raise this with your metabolic team.

100% attendance awards

Many schools encourage children to attend school every day, for example offering treats at the end of the year to those with full attendance.  Children with PKU will inevitably have some absences for their clinic appointments and should not be penalised for absences related to their PKU.

It is not generally acceptable for schools to penalise children for their attendance if absences are related to a medical condition that the school has been notified about.  If attendance awards are issued, reasonable adjustments should be made to ensure pupils with medical conditions are not disadvantaged. This is a legal requirement.

Problems with dietary management

 NSPKU is aware that some schools do not manage children’s dietary needs adequately.

The NHS, local authorities and all schools in England, Scotland, Wales and Northern Ireland all have duties towards children with medical conditions, including PKU.  Schools are required to make adjustments so that children with PKU should be able to take part in all aspects of school life.

If your child’s school or nursery is not adequately managing your child’s dietary needs, you should communicate your concerns to your dietitian or metabolic team.  The NSPKU can also provide advocacy support.  We find that problems can often be resolved with extra communication.