STUDENT EMMA JORDAN What was this research about? variety of strategies to help school staff understand including meetings with teachers, SENCOs and health professionals; This study explored the experiences of a group of parents of taking in materials from charities and giving presentations on children with Ehlers-Danlos syndrome attending mainstream EDS and their child. primary and secondary schools in England. It examined the adaptations schools had provided and explored which were effective. Policy and practice What did I do? Parents felt that the EHCP process was overly complex and favored some types of need. Healthcare plans often failed to I advertised via EDS UK for parents of children with EDS who meet all of the child’s complex needs and were frequently not attended mainstream primary or secondary schools in shared with all staff working with the child. This sometimes England to take part in my small-scale research study. Ten meant that children were blamed and punished for trying to parents responded to the advert and each took part in a mitigate their EDS symptoms. Some parents felt that they interview about their child or children’s experiences. were hounded by the school over absence issues yet were unable to access work to help their child keep up whilst at What did I find? home. Provision for children with EDS is very mixed. Within this small Peer acceptance sample I found examples of effective practice but I also heard about situations which fell short of this standard and were The majority of parents reported that their children were having a negative effect on the health and wellbeing of both happy and had good friends who supported and included the child with EDS and their family. them. It wasn’t clear whether children’s empathy was something they were born with or because of experiences at Understanding EDS home or school, but it was lovely to hear that most children had not experienced problems because of EDS. Parents felt that in order for the school to meet their child’s needs effectively they needed to understand EDS. They recognized that because EDS is rare, schools may not have heard of it and that it was difficult for teachers because symptoms are varied and often invisible. They had tried a
STUDENT EMMA JORDAN What was this research about? This study explored the experiences of a group of parents of children with Ehlers-Danlos syndrome attending mainstream primary and secondary schools in England. It examined the adaptations schools had provided and explored which were effective. What did I do? I advertised via EDS UK for parents of children with EDS who attended mainstream primary or secondary schools in England to take part in my small-scale research study. Ten parents responded to the advert and each took part in a interview about their child or children’s experiences. What did I find? Provision for children with EDS is very mixed. Within this small sample I found examples of effective practice but I also heard about situations which fell short of this standard and were having a negative effect on the health and wellbeing of both the child with EDS and their family. Understanding EDS Parents felt that in order for the school to meet their child’s needs effectively they needed to understand EDS. They recognized that because EDS is rare, schools may not have heard of it and that it was difficult for teachers because symptoms are varied and often invisible. They had tried a variety of strategies to help school staff understand including meetings with teachers, SENCOs and health professionals; taking in materials from charities and giving presentations on EDS and their child. Policy and practice Parents felt that the EHCP process was overly complex and favored some types of need. Healthcare plans often failed to meet all of the child’s complex needs and were frequently not shared with all staff working with the child. This sometimes meant that children were blamed and punished for trying to mitigate their EDS symptoms. Some parents felt that they were hounded by the school over absence issues yet were unable to access work to help their child keep up whilst at home. Peer acceptance The majority of parents reported that their children were happy and had good friends who supported and included them. It wasn’t clear whether children’s empathy was something they were born with or because of experiences at home or school, but it was lovely to hear that most children had not experienced problems because of EDS.
EDS-Research-Newsletter-Emma-Jordan.docx