Advice about epilepsy and lone working.

[LondonLady1980]

Firstly - I’m posting in here because I have absolutely no idea what forum is best suited to my question. I have been scrolling through the different forum options and nothing seems applicable, so here I am in the hope that someone can either advise me, or signpost me somewhere, or direct me to someone that may be able to help me.

In a nutshell, I have epilepsy and I work in a self-employed role which involves me going to visit new mothers in their home.

I am plagued constantly by the worry that these mothers book my services, not knowing of my condition and the possibility of me having a seizure whilst I’m with them.

I’m well aware that witnessing seizures can be very traumatic for people who have never seen them and I can’t imagine what it would be like if I were to have one in the home of a new mother, who is already in a vulnerable situation, and how she would be impacted in the scenario of a professional who has come to support suddenly and unexpectedly having an epileptic seizure during our appointment.

I have a seizure about once every 6-9 months so the chance of it happening is very slim, but I am well aware that it’s a very unpredictable condition. Sometime I have warnings before my seizures and sometimes I don’t. But either way, it doesn’t change the outcome or change the situation the family would be faced with.

I love my job more than I can say, but this anxiety is having such an impact on me. I would never, ever want to put a new mum in such a terrible situation.

I know that I am entitled to medical privacy and that my condition is protected by disability laws (regarding employment) but morally, and ethically…… I still don’t feel okay.

Has anyone ever been in a similar situation and could offer any advice?

Or know of any organisations that could help?

I have been googling like mad but all the information is geared towards people who have employers and the importance of informing managers (and/or co-workers) for my own safety, which is obviously not relevant to my situation at all.

All advice, suggestions and help is welcome.

Thank you.

Ok, I've also got Multiple Sclerosis and I've had a stroke (i have soming that causes many strokes among many other things - COL4A1).
You get to a point in life where things don't matter as much as you thought they did.

I think you need to bite the bullet @LondonLady1980 and try telling people as part of the booking process. Then see what the reactions are. If you lose too much business then that’s your answer. I don’t think it is fair to not tell people and give them the choice and the necessary information.

Are you a lactation consultant or similar? I think your other option might be to give up the client work and see if you can instead become a trainer of other people?

Are these people that you see more than once, or does each client just get one visit?

The problem with them not knowing is if you do have a seizure, they will phone for an ambulance, which is obviously not necessary. I phoned one the first time I saw my partner have a fit, he had told me there was no need to, but it just looked so severe and terrifying. Plus he'd fallen out of bed and banged his head quite badly on a dresser. I felt a bit of an idiot afterwards.

If I were you, I would quickly mention something while introducing myself. Something like, just to make you aware I have epilepsy, it's unlikely to happen, but if I do have a seizure you don't need to call for help unless it lasts longer than 5 minutes, I'm used to having these, it's normal for me. Or whatever you think they need to know.

To be perfectly honest though, I'm not sure I could do a job that might lead to me collapsing in a stranger's home.. a vulnerable stranger with a new born, who will definitely have enough to deal with. I know that sounds awful, it's just a lot to potentially put on them, that's all.

Is there no way you could get a similar job but in a clinical setting?

EDIT: Just to add, are you holding the babies at any point during your appointments? This could be quite dangerous if there is a chance that you'll collapse at least once a year.

on which case, I think it’s ok not to say. They won’t be terrified. However, you’d probably get better/quicker assistance if you do tell them. I think a quick mention at the start ‘housekeeping’ would work. ‘It’s extremely unlikely to happen, but I wanted to let you know I’m epileptic. In the unlikely event I have a seziure please call an ambulance and all the info is on my bracelet’.

These are parents that I generally have just a one-off Consultation with.

I have contacted the Legislating body of my profession and explained my situation and although the Code of Conduct says that we are expected to voluntarily withdraw from service if our health compromises OIt ability to so the job, there are no set requirements or specifics about what this actually means and they are happy for practitioners to make their own independent judgement on the ability to perform the role 🙄

I have spoken to my Insurance company and explained the situation to them and I am expecting a call back from them today.

For now I have cancelled my upcoming appointments over the weekend and found alternative practitioners for them to see, and I won’t be taking on any more clients until I have a much better idea of where I stand professionally and legally.

Thanks. V similar to me! Is your clobazam dose 10mg?

Yes, I take a Clobazam as soon as the first strange sensations arise that indicate something is happening. Then half an hour later, if I still don’t feel right I have to take a second tablet. If half an hour after that second tablet I’m still not back to my normal self I have to call 999.

Alternatively, if after half an hour of taking my first Clobazam I seem back to myself I still have to take another Clobazam half an hour later (so an hour after my initial one), just as a buffer to try and prevent another occurrence happening later on that day.

I’ve also been told that during times of vulnerability, for example if I’m unwell with a virus etc then I’m to take one tablet before bed for three nights in a row to try and prevent any seizures occurring. I haven’t had to do that before though.

The Clobazam was prescribed to me well over a year ago and I’ve only had to take 3 tablets so far which shows how infrequent it is that my episodes occur.