There is much in the news just now about information and misinformation. At a time when truth, accuracy and transparency are vital, Epilepsy Scotland is working to provide you with the information needed to help us all through this incredibly difficult situation.

To help us do that we may need to ask you for your assistance.

This is one of those times. And whilst we in no way want to cause alarm or add to any anxiety you may already be experiencing; we need to ask you about a couple of issues we are currently investigating.

We are aware some people have received letters or “out of the blue” phone calls from GPs asking about what that person would want to happen should they be taken to hospital with COVID19. This is not specific to those who have epilepsy; it maybe they are in an older age group or have a long-term condition alongside epilepsy.

We are also aware some people may have been approached directly or indirectly about possible changes to their support packages, funding and/or residential accommodation. Again, this may not be specific to epilepsy but might involve someone who has the diagnosis of epilepsy amongst other things.

In both cases, Epilepsy Scotland is concerned those we represent and those who care for or are responsible for them may be unsure about what is happening and why. We are also concerned that some in residential accommodation could face temporary removal, when no other groups in society are being asked to move from their homes.

If you or someone you know has experience of these issues due to COVID19, please email ATonberg@epilepsyscotland.org.uk to share that knowledge. It will help us to ascertain the truth and in turn help you understand what is happening.

Thank you