My Lords, I, too, thank the Minister for his amendment because it is a great way of starting the debate. I have put my name to Amendments 220 to 222 because, as we have already heard, too many children with health conditions are not getting the support they need in schools and this problem needs to be addressed. They include, as we have heard, children with diabetes, epilepsy and incontinence and many others who all need greater consideration. However, I want to concentrate on children who suffer from sickle cell disorder, an invisible illness.
There is a strong feeling among doctors, medical practitioners and those working with children who suffer from sickle cell that provision of community nurses who deal with sickle cell sufferers should be expanded and more resources made available in schools. According to a British Educational Research Journal article, many young people who suffer from sickle cell disorder report extensive negative experiences at school. Around half have been prevented drinking water in class and going to the toilet. These are simple, basic needs of sickle cell sufferers. More than one-third were made to do unsuitable exercises and were called lazy when they got tired because of their sickle cell condition. Awareness needs to be raised by nurses visiting schools whenever and wherever necessary to support and educate staff, particularly sports teachers, about simple practices such as children getting dried off quickly after swimming, cooling down after vigorous exercise and being allowed to drink freely in class. Staff also need to be aware of the brain problems, such as silent stroke, that can occur at any time to those suffering from sickle cell.
Young people were reluctant to disclose that they had sickle cell, as they found many teachers were not knowledgeable about the disorder and felt it might be seen as a disadvantage. In some cases it can be, because if they have an attack or a crisis they have to miss lessons at school and therefore do not reach their full potential. It is all about equality, about educating schools and about training. The provision of specialist nurses in the community is also patchy and not well resourced. This needs to change.
The Sickle Cell Society believes that there needs to be a specific guide for schools on sickle cell disorder, rather than relying on generic guidance. Managing Medicines in Schools is limited because it refers only to medication and what to do in an emergency. It misses out the whole area of prevention and preventive measures, which is vital to keep those with sickle cell disorder safe and well. Also, it is no good having advice on managing medicines if school staff can simply refuse to administer them. Research shows that only a quarter of schools would agree to give children with sickle cell disorder mild painkillers, which is a problem for those suffering sickle cell, who need such medication if they have a crisis or an attack. We need to rewrite the guidance Managing Medicines in Schools to include sickle cell, which is the most common single genetic condition in England, affecting one in 1,850 of all births in England.
I know that the Government’s view is that the local school is best placed to know the needs of its children, but research has shown that schools are clearly not well placed to do this with sickle cell disorder and need considerable help and guidance to respond adequately. All children with medical conditions are supposed to have an individual healthcare plan, but research shows that only 43% of schools with children with sickle cell disorder even claimed to have such a plan. Checking that all schools have such plans in place for children with sickle cell disorder is essential. If such a policy is implemented it will reduce admissions of sufferers to hospital, which is an added, unnecessary strain on the NHS. Unfortunately, children suffering from sickle cell disorder do not have any provision under special educational needs; therefore I believe that a statement of special educational needs is necessary to help protect these children’s well-being at school and I look forward to hearing the Minister’s views. I hope that these children will be brought into the fold and given greater consideration.