The Sickle Cell Society

Knowledge Transfer Partnership

The project is to undertake an initiative to improve the preventive health care offered to children with sickle cell in schools and to prevent any school absences through illness adversely impacting on their educational achievement and ultimately their employment prospects.

history Campaign has now closed

It ran from to




  • Community Support & DevelopmentCommunity Support & Development
  • Education/Training/EmploymentEducation/Training/Employment
  • Health/WellbeingHealth/Wellbeing


  • Children (3-18)Children (3-18)
  • Young People (18-30)Young People (18-30)



A survey of 569 young people with sickle cell disorder (SCD) in England has found such pupils miss considerable periods of time from school, typically in short periods of two or three days. One-in-eight have school absences equating to government defined “persistent absence”. Students with SCD report that they are not helped to catch up these school absences. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being called lazy when tired. Children perceived both physical environment (temperature, school furniture) and social environment (being upset by teachers or other pupils) as triggers to episodes of their illness. Policy initiatives on school absences; preventive measures to ensure maintenance of good health; and measures to prevent perceived social attitudes precipitating ill-health would reduce the number of school absences, help young people with sickle cell develop to their potential educationally and reduce unnecessary episodes of illness, including episodes requiring expensive hospitalization. It has been estimated that the costs of unnecessary hospital admissions for illness caused by lack of preventive work in schools will rise to £20 million a year within one generation. Evidence also suggests that parents or child simply telling the school about their sickle cell it itself insufficient to improve the school experience of young people with sickle cell and this is why a more concerted approach is required. Therefore what is required is to establish a formal policy framework on sickle cell at school so that what happens to children with sickle cell in schools is not dependent on individual goodwill on the part of individual teachers. The Sickle Cell Society would like to create a Knowledge Transfer Partnerships with De Montfort University to try to improve the situation of young people with sickle cell in schools. The Sickle Cell Society is required to fund 33% of project costs over two years, then the university can apply for a further 67%. These monies together buy a young graduate called an associate to work full-time for two years on the project, plus monies for supervision by the university professor, travel and university administration of the scheme. Under the terms of the scheme it is the university who has to apply for the monies, but to do this the third sector partner has to fund 33% of the scheme. Aim To embed knowledge of supporting sickle cell students in schools by writing, implementing and monitoring standards for support of people with sickle cell at school. Objectives •From data-sets available at the university (DMU) to identify best educational practice to support people with sickle cell at school. Output: Documented series of case study examples •Establish a working group of stakeholders (local education authorities, primary care trusts, professional bodies for teachers and school nurses, and people with sickle cell.) Output: Minuted series of stakeholder meetings •Draft a consensus Standards of Practice for Schools for Young People with Sickle Cell, including audit points. Output: Draft report •Establish the key contact in local authority Children and Young Person’s Department to enable ongoing channels of communication with the Sickle Cell Society and the implementation, monitoring and evaluation of the Standards. Output: Database of up to 150 key contacts •Introduce the pathways to other stakeholder networks in England through a conference. Output: Conference •Produce a final report evaluating the Standards. Outputs: Publication of the Standards; Final report evaluating the standards