There’s been a number of references to health care teams in the recent modules and I can honestly say that I don’t have one! I have to have an annual medication review with my GP but other than a quick discussion about whether my meds are working that is the full extent of the support I receive.
I’m always envious when I see references to epilepsy nurses as I’m not aware that we have one locally and it’s never been suggested in my annual discussions. The guidance on care plans is also news to me as, again, this has never been raised (even by my neurologist – when I’m actually linked to one!).
Until my most recent pregnancy my care has always been reactive (ie I have a seizure, go to my GP who refers me to a neurologist who reviews my meds and discharges me with the option to return if I need to – which requires a new referral!).
Having seizures during my first pregnancy led me to take more control in my second with my seeking a referral in the first weeks of pregnancy and having 2 appointments during the first months of pregnancy. The neurologist I was working with had a special interest in epilepsy and pregnancy and was linked to a project (at Liverpool Uni?) which studies AEDs in pregnancy. Once she’d provided advice on how I should increase my dosage should seizures occur she again discharged me with the reference to returning if I needed to see her.
I’m really disappointed by this approach and having tried to make appointments myself I’ve been advised that because there have been more then 3 months between the previous appointment and my request I need to be re-referred. My GP expressed the belief that this practice is to ensure that the hospital receives new referral fees each time. Grrrr!
I am concerned about the menopause which is traditionally early in my family as I’m anticipating seizures when my hormones become ‘scatty’. Part of my action plan is to put a referral in place so I can agree a programme of monitoring my drug levels regularly to ensure that my dosage is sufficient. During my pregnancy I didn’t have this and it took a seizure before the drug levels were increased.
Wish me luck!
