By Lesley Scott of the TYMES Trust
Lesley Scott explains why the Scottish Government presumption that attending school is always best can affect the health of children with ME
In this ME Awareness week, the Scottish Parliament held a members’ debate to highlight this much misunderstood and ignored illness. Gail Ross MSP lodged the motion and opened the debate citing over 21,000 adults and children in Scotland as suffering from this illness but added that we have no idea of the numbers who are undiagnosed or misdiagnosed. Demonstrations will take place in 25 global cities world-wide this week under the slogan Millions Missing to highlight the millions of people across the world who are missing out on normal lives with displays of shoes representing the 25% severely affected.
For children and young people with this illness, insistence on school attendance as required through the Scottish national framework GIRFEC (Getting it Right for Every Child), can impede recovery and is a key cause of deterioration and relapse often to a greater severity. Many children miss out completely on education when, with a more appropriate response, they could have maintained education and recovered their health more quickly. For children with ME, what is known as energy efficient education, such as home education, home tuition, distance or virtual learning, can maximise achievement whilst protecting health.
Education provision needs to fit the child, not the other way around.
Amid the revelation this week of declining standards of literacy and numeracy amongst Scottish children and young people, John Swinney, cabinet secretary for education, told parliament that the “statistics need to improve”.
GIRFEC, the literature tells us, “begins with good attendance at school” with those who fail to attend being highlighted as not meeting their wellbeing outcomes. One family were reported to child protection services by their son’s Named Person because of his prolonged absences from school due to a rare chronic immune system disease. The mother stated that “the council do not have policies for chronic illnesses in schools and force ill children to attend full-time whatever the cost to their health.”
Education is the legal responsibility of parents. Government, be it local or national, is there to offer a service to help parents meet that responsibility. The government role is not to target families for state interference when they do not fit the current mould.
Those children and young people with the potentially chronic and severe neurological condition ME, formerly known as Atypical Polio, and their families are only too familiar with such a scenario. ME causes more long-term sickness absence from school than any other illness – in children and staff alike. It affects the brain and thinking processes as well as the rest of the body. The Institute of Medicine recognise “that exertion of any sort – physical, cognitive, emotional – can adversely affect these patients in many organ systems and in many aspects of their lives.”
For children and young people with ME, getting an education has become a very grave threat to their health and their future. In order for them to be given any chance of sustainable and appropriate education provision it must be accepted that children with ME need to be missing from school.
Lesley Scott is Scottish officer for the Young ME Sufferers (Tymes) Trust