What schools should know

One of the most frequently asked questions from parents whose children have cardiomyopathy is: "What do I tell their school?"

School is an incredibly important part of a child's life for academic and social reasons and what happens there will impact on the rest of their lives.

Parents want their child to have a normal childhood like other children. Understandably, the anxiety which parents express in clinic relates to "getting the balance right".

Parents are concerned that by saying too little they are putting their child in danger, but by saying too much their child may be penalised by their peers, bullied or excluded from activities.

I work with the inherited heart disease team at Great Ormond Street Hospital (GOSH) and we believe that schools need to know. By giving information to their child's school, parents ensure the school has enough information to help their child if they exhibit symptoms such as dizziness, faints, chest pain and shortness of breath, and, probably more importantly, parents can feel more confident that teachers know what to do if symptoms occur.

Many parents feel uncertain where to start when explaining what their child has. 

In these circumstances, and with their permission, I will write a letter for them to take to school. The letter outlines what cardiomyopathy is, what restrictions this places on the child, what symptoms to look out for and what to do if the child becomes unwell.

If the child has an internal defibrillator (ICD), then the letter also explains what it is, what sports to avoid and what to do if the child beomes unwell or has a shock delivered by the ICD. The letter also gives contact details for the team here at Great Ormond Street Hospital so that the school can contact us for advice or to arrange a visit, which would be undertaken by myself or one of the other clinical nurse specialists here.

For those children with an ICD we would recommend a school visit.

One of the biggest worries for parents and teachers seems to be sporting activities.

The level of sports your child takes part in needs to be discussed during clinic visits.

If your child has no symptoms then he or she should be allowed to participate in sports at school. However, these should not exhaust them or be at a competitive level.

In the letter I write to a school, I will outline what sport should be avoided and what level of activity could be allowed.

With older children I emphasise that what they can do has been discussed in clinic with them and they are very aware of what they can and cannot do. I feel it is important to empower older children so they feel able to ask to sit down and rest if they think they are doing too much or to ask to do more if they feel able.

If your child has symptoms then the school needs a letter clearly outlining what activities have been discussed and agreed with the cardiologist.

Over the past year I have found most parents have a great relationship with their child's school and that schools are keen to understand what cardiomyopathy and ICDs are so they they can provide a safe environment that allows the child to fulfil their potential.

Prior to visiting a school I will suggest they invite who they think should attend the school meeting. Usually, head teachers, year teachers, school nurses, classroom assistants and special education needs officers have been present.

I also ask that parents attend and also, where appropriate, the child. This allows parents and the school to discuss with each other any concerns they have and also ensures the school, parents and child are clear on what to do if symptoms occur and what level of activity is appropriate.

So far the feedback from parents and schools has been positive and more importantly the children involved have found the meetings beneficial.

If parents still have concerns about what to tell schools they should discuss these with their cardiologist.