We are a typical family - husband, wife and a son who is rapidly approaching teenage years. But, like other families, we have a health condition which presents challenges. For us, the issue is life-threatening epilepsy.
Throughout the last fifteen years, we have been blessed by the support of many excellent professionals within the NHS. We have nothing but praise for all the help we have had in trying to control the epilepsy. This has included Professors of Neurology, Neurological Consultants, Clinical Neuropsychologists, GPs and a Specialist Epilepsy Nurse.
Purpose of This Website
Having been fighting for this essential care since October 2017, things are still unresolved. It has caused a lot of problems. The stress and strain has resulted in the husband being unable to continue in his role as an executive headteacher, and cannot return to similar employment while these issues continue. All of this increases the strain on the rest of the family (including extended family).
It has been immensely challenging trying to find appropriate information to support us as we try to resolve this. However, we want to put our strains to good use by helping others. By putting all the information that we have found useful in one place, it might help. If this site can help just one other person/family to get the health care they need and are entitled to, then it will have been worth it.
There are no adverts and we have no links with any of the organisations mentioned. We just want others to find it easier to access the information they need.
Update - June 2019
Due to on-going issues with West Hampshire CCG, we have decided to launch a national campaign. This was never our intention but we are being left with few options (as giving in is not one we will consider). As such, the purpose of our website has evolved. In addition to the above reason, we are using it to highlight the challenges faced by people trying to receive the essential, life-saving care that they need.