Sickle Cell In School

Creating inclusive, supportive schools where pupils with sickle cell can thrive.
Understanding, listening and simple adjustments can make a big difference.

Supporting Pupils to Learn, Participate and Belong

Every child and young person with sickle cell disease deserves an education that supports their health, learning and ambitions.
Sickle cell disease is an inherited blood condition. It can cause pain, fatigue and other health complications, but its effects vary between pupils and can change from day to day. A pupil may look well while experiencing symptoms that affect their concentration, movement or ability to take part. Schools can make a real difference by listening to pupils, working with families and healthcare professionals, and putting clear support arrangements in place.

About this information

This page has been adapted by Sickle Cell Care Manchester from Sickle Cell and Thalassaemia: Education, Health & Care — A Guide to School Policy, by Professor Simon Dyson. The guide draws on research into the experiences of young people with sickle cell in schools in England. We have summarised and updated the information for this website, including clarifying the difference between an individual healthcare plan and an Education, Health and Care plan.
Read the original guide

Everyday support that makes a difference

Drinking water and using the toilet
Pupils with sickle cell need easy access to drinking water throughout the school day. They may also need to use the toilet more frequently.

  • Allow toilet visits when needed, without embarrassment or unnecessary delay.
  • Make sure these arrangements apply during exams, trips and extracurricular activities.
  • Follow individual advice from the pupil’s healthcare team about fluid needs.

Managing fatigue
Fatigue can affect concentration, memory and physical activity. It should not be mistaken for laziness or lack of interest.

  • Offer rest breaks and a suitable, supervised place to recover.
  • Allow extra time to move between lessons.
  • Consider a lift pass or classrooms that reduce the need to climb stairs.
  • Adjust workloads and deadlines when symptoms affect learning.

Staying comfortable in different temperatures
Cold, damp conditions, overheating and sudden temperature changes can make it harder for pupils to stay well.

  • Allow an extra layer or coat indoors when needed.
  • Provide an indoor option during cold, wet or windy breaks.
  • Avoid seating the pupil directly beneath cold draughts or air conditioning.
  • Plan ahead for outdoor activities and changing weather.

Plan ahead for outdoor activities and changing weather
Taking part in PE and swimming
Support pupils to participate in ways that suit their individual needs and healthcare advice.

  • Agree suitable activities with the pupil, family and healthcare team.
  • Provide water, rest breaks and alternatives to strenuous activity.
  • Allow the pupil to stop if they feel pain, tiredness or become unwell.
  • For swimming, consider water temperature and opportunities to dry off and warm up promptly.

Listen to the pupil. They should not have to prove that they are in pain or feeling unwell.

  • Allow toilet visits when needed, without embarrassment or unnecessary delay.
  • Make sure these arrangements apply during exams, trips and extracurricular activities.
  • Follow individual advice from the pupil’s healthcare team about fluid needs.
  • Allow water bottles in lessons and provide opportunities to refill them.
  • Allow toilet visits when needed, without embarrassment or unnecessary delay.
  • Make sure these arrangements apply during exams, trips and extracurricular activities.
  • Follow individual advice from the pupil’s healthcare team about fluid needs.

Agree an individual healthcare plan

An individual healthcare plan, often called an IHP, sets out how a pupil’s medical needs will be supported at school.
For pupils with sickle cell, an agreed plan can help staff respond consistently and reduce the need for the pupil to repeatedly explain their condition.
Develop the plan with the pupil, parents or carers, relevant school staff and the specialist sickle cell team. Review it at least annually, and sooner if needs change.

Include:

  • The pupil’s symptoms, needs and agreed preventive measures.
  • Access to water, toilets, rest and suitable temperatures.
  • Medication instructions, consent, storage and trained staff responsibilities.
  • What to do when the pupil reports pain or feels unwell.
  • Emergency instructions and key contact details.
  • Support for absences, missed learning, PE, exams and school trips.
  • How relevant information will reach supply teachers and other staff.
  • Arrangements for moving between classes or schools.

Is This The Same As An EHCP?

No. An Education, Health and Care plan, or EHCP, is a separate statutory plan for children and young people whose special educational needs require that level of provision. A diagnosis of sickle cell does not automatically mean a pupil needs an EHCP. Medical support should not be delayed while an EHCP is being considered.

Responding to Pain and Illness

Pain can develop suddenly and may not be visible. Take the pupil’s account seriously and follow their individual healthcare plan. Where the agreed plan allows, some episodes may be supported with prescribed treatment and rest at school. The pupil should never be pressured to remain in lessons or return before they are well enough.
Make sure staff know:
  • Who is responsible for supporting the pupil.
  • Where prescribed medication is kept and who can administer it.
  • How to provide appropriate rest and supervision.
  • When to contact the family, specialist team or emergency services.

When Urgent Help is Needed

Call 999 if a pupil with sickle cell has a high temperature, or a suspected sickle cell crisis with severe pain, breathing difficulties or vomiting.
Call 999 for suspected stroke, including sudden facial weakness, arm weakness or difficulty speaking—even if the symptoms stop.
Stay with the pupil, follow the emergency instructions in their healthcare plan and tell the ambulance team that the pupil has sickle cell disease. Contact their parent or carer without delaying emergency help.

Supporting Attendance and Missed Learning

Illness, hospital appointments and treatment can interrupt education. Pupils need a supportive response and a manageable way to catch up. Remote learning may help when a pupil feels well enough, but recovery should remain the priority.

  • Agree how families will communicate illness-related absences.
  • Record absences accurately and avoid treating illness as deliberate non-attendance.
  • Provide lesson materials and prioritise essential missed learning.
  • Offer flexible deadlines and a realistic catch-up plan.
  • Consider contact with hospital education services where appropriate.
  • Keep the pupil connected with classmates and school life.

Exams, Trips and Wider School Life

Discuss support early so the pupil can participate as fully as possible.

For Exams

Speak to the school’s exams officer about suitable arrangements and any evidence needed under the relevant awarding body’s rules.

For Trips

Plan access to medication, drinking water, toilets, rest, suitable temperatures and emergency help. Involve the pupil and family in these discussions.

For Careers

Offer careers advice based on the young person’s interests, strengths and aspirations, with individual advice about any health-related adjustments.

Building understanding and challenging discrimination

A supportive school recognises both the physical and emotional effects of sickle cell and takes steps such as those listed here, to ensure that the school is ready to support pupils with sickle cell disease.
  • Train relevant staff, including lunchtime supervisors and supply teachers.
  • Challenge bullying, racism and assumptions about pain, tiredness or attendance.
  • Include accurate information about sickle cell in appropriate science and PSHE lessons.
  • Respect the pupil’s privacy and agree how information will be shared.
  • Never expect a pupil to explain their condition to classmates unless they want to.

School Responsibilities in England

Maintained schools, academies and pupil referral units in England must make arrangements to support pupils with medical conditions under Section 100 of the Children and Families Act 2014.

Schools also have duties under the Equality Act 2010 towards disabled pupils, including making reasonable adjustments.

Read The Department of Education Guidance

Need Support with Sickle Cell and School?

If you are a parent, carer or member of school staff, contact Sickle Cell Care Manchester to discuss support, advice or awareness raising. Together, we can help young people feel understood, included and supported in their education.

Contact SCCM

Source acknowledgement: Adapted from Professor Simon Dyson’s Sickle Cell and Thalassaemia: Education, Health & Care — A Guide to School Policy. The original guide is available under the Creative Commons Attribution–ShareAlike 4.0 licence. This adapted educational text is shared under the same licence. SCCM has condensed, reorganised and updated the wording; this does not imply endorsement by the original author.

This page provides general information. Support and treatment arrangements should follow the pupil’s individual healthcare plan and specialist healthcare advice.