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.

Could you possibly wear a lanyard which says you have the condition and has a couple of bullet points about what someone should do if you do have a seizure? Even if it says “stay calm this seizure will last no longer than xx” or whatever is appropriate. Then you wouldn’t need to actually say anything but it would be prominent enough to be obvious and hopefully reassuring if something were to happen.

I witnessed a seizure once, albeit in a medical setting but even so, it was horrific. You should probably speak to someone at Epilepsy UK as you shouldn’t be working unsupervised and definitely shouldn’t be driving to and from appointments

Not sure that’s right @guestusername - epileptics are allowed to drive provided the insurers know of the condition!

(Duplicated)

MN is shocking for epilepsy advice, some of the things I've read here in the past are jaw dropping.
The OP doesn't mention she is driving and wouldn't be if she is having seizures within a 12mth time frame.
But people with epilepsy go about their normal lives, they certainly don't need supervision or preventing from working alone.

Only you can know how you are, seizures differ a lot. My dsd has epilepsy and cannot be left unattended whereas my dd has occasional seizures and does everything except swim alone or drive (not allowed a licence)

I’m just going based on my own experience and that of my epileptic brother

It can be unsafe for some to lone work depending upon individual circumstances. It was certainly unsafe for my Mother when she developed it out of the blue, due to the type that she had and the frequency of seizures/auras, how they presented and how ill it made her. Thankfully hers were under control after a year but during that time on the occasions when she was able to work, lone working would have been dangerous for her. There is no blanket policy as everyone’s experiences of seizures can vary so much.

I agree with the lanyard advice. Is there someone they can phone if it happens eg husband.

What are your seizures like and what happens after them? This influences how reasonable it is for you to risk this happening in someones house. If you need to rest straight after how would this be managed. I'm not suggesting you share that level of detail on here but just to help you think it through.

MOST epileptics are NOT allowed to drive. Of course they’re not.

They’re only able to if 12m+ seizure free, or certain other conditions are met (ie no loss of consciousness/control), seizures only ever happen at night etc.

Epilepsy Scotland gave brilliant advice when my Mother developed epilepsy so I assume that Epilepsy UK and Epilepsy Action would offer the same so I’d contact them.

I agree that witnessing a seizure is distressing but they’ll get over it, imo I’d be more concerned about the impact upon you that the stress and anxiety is causing you so I do think that it’s worth speaking to someone about it.

Thank you for all your responses.

I do not drive and I have a family member who drives me to and from my appointments.

I have worked as a lone worker in the past but that was when I had been seizure free for over 4 years so I didn’t really consider myself a risk, but things are different now.

The way in which my seizures present mean they would heavily impact on me after the seizure ended. I usually have hours of ‘lost time’ after the seizure so it’s not like I would just come round and be ok and be able to reassure the mother and be back to myself etc. The last three seizure episodes I’ve had have all required emergency treatment and hospital attendances.

I do wear a Medical Alert wrist band but it doesn’t state what my condition is on the outside of it. So all my clients can clearly see my band but all my health details and relevant information are on the inside of the band, so not able to be seen whilst I’m wearing it.

I think you should look at Epilepsy Action for proper advice, as you have no idea of the credentials of anyone who will reply to you on here.

My sister works in a cafe with a member of staff with epilepsy and although he has zero cooking/risky activities he can not be allowed to be left alone. He had to have a member of staff in the same area at all times due to the risk assessment etc

My worry isn’t for myself, I’ve had seizures all over the place, I’m not worried about the risk I pose to myself, my concern is for the mothers I work with.

I’m worried that by going to their homes, and putting them in the position of potentially being responsible for my health and safety and getting me medical treatment is actually, very unfair of me. I’m trying to work out whether I’m obligated to tell them about my epilepsy before the Consultation so at least if something does happen they aren’t completely unprepared.

But it’s sadly one of those conditions that is really misunderstood and stereotyped and I can imagine a lot of people would then cancel their appointments with me out of fear.

I feel so conflicted and confused.

@LondonLady1980I really really feel for you. My husband is epileptic, tonic clonic seizures that whilst not frequent are pretty brutal and he’s had several episodes of status epilepticus that has required 999 response and critical care.

They’re frightening for him and they’re equally- if not more so (said by my husband!) - frightening for me. The first time it happened it was the most scary experience of my life and it actually left me with diagnosed PTSD (as I had no idea what was happening, I thought he was dying there and then).

Therefore my personal opinion is, very gently, that it would be unfair to put people in a position to deal with this unexpectedly (especially new mums who are often vulnerable and fragile anyway). However, I understand also how much this impacts your life. I wouldn’t necessarily say don’t work, but as a minimum I think there should be a heads up or the possibility (even if slim) and instructions for those you visit with what to do if it happens.

It’s very difficult though and it’s not straightforward as I can’t see how you can practically do this without disclosing the condition.

Epilepsy - especially it’s unpredictably- totally sucks and I send you love.

My DH was the same as @ChristmasLeftovers in the type of seizures though they happened every 3 or 4 months. 4 years ago after a particularly bad accident his medication was reviewed and he has a combination of meds and has been seizure free ever since.

I mention this because coming from someone with direct experience I have a few questions. Are you adequately medicated and do you have absences as well as unconsciousness? Does the family member who drives wait for you? Do you handle babies during your visit and how long are the visits? Do you get work by word of mouth?

It can be frightening witnessing a seizure especially if you are disorientated afterwards? Whilst informing the parents may lose you some business would the peace of mind lessen your anxiety?

But it’s sadly one of those conditions that is really misunderstood and stereotyped and I can imagine a lot of people would then cancel their appointments with me out of fear.

I can't believe people are still so ignorant. I had it as a child and grew up thinking there was always something wrong with me and was ashamed of it. I used to refuse to take my medication as I didn't want to be different to other children my age, being in and out of hospital so often didn't cross my mind(although I refuse to go in a hospital as an adult and get really nervous if I have to).

in the UK , after a seizure e(fit faint or funny turn) you have to surrender your drivers’ licence. And then you have to be 12 months seizure free before the DVLA will let you driver again

I take three different anti-epileptic medications.

When I have my absences they don’t happen for a few seconds and quickly pass (as absences normally present) and instead they progress into episodes of non-convulsive status epilepticus which is basically where I have back to back absences with limited levels of awareness between them, and this is why I require emergency treatment/hospital attendances.

I have emergency medication that I carry on me at all times that has to be taken as soon as an initial absence occurs in order to try and prevent the episode escalating, but if I am on my own, that is reliant on me still having the awareness to understand what is happening to me and understanding that I need to take one of my tablets. If I do take a tablet it generally takes about 15 minutes to take effect. Apart from doing this job I am very rarely on my own so there is always someone to prompt me to take my medication when they realise an episode is starting.

The person who takes me to my appointment doesn't wait outside as my Consultations are 1.5 long, but they are usually about a 20 minute drive away, so not too far. I could phone them as soon as I started to feel odd, but again that is reliant on me having some kind of warning and me being aware enough to logically think “something doesn't feel right I need to get help” - which isn’t always the case. By the time the epileptic activity has started my awareness and comprehension of what’s going on is already altered.

I really, really hate living with this condition and the way it affects everything. I love my job so much and I will be devastated if I have to give it up.

Do you wear a medical SOS bracelet or necklace?
i would also carry a clearly labelled envelope in my handbag with a quick summary. If you had a.seizure then most people are going to call an ambulance. They will check for a MedicAlert and probably rifle through your bag for info.
i wouldn’t tell customers I had epilepsy, but I would make sure that I didn’t carry a baby upstairs or be left alone with them in a bath.
Good luck, the what if’s are usually much worse than the actuality.
COI sister with epilepsy and diabetes, who generally tells employers about 2 weeks in.

im epileptic and become a new mum last year (and the song and dance they made about sleep deprivation being a trigger for seizures pretty caused sleep deprivation…)

I would have been sympathetic but deeply unimpressed if someone visiting me in a professional capacity went and had an expected seizure in my floor ,(Though I would assume it was the first time - why would someone who had frequent seizures be putting themselves in this position ? )
If they did have a seizure I’d have called an ambulance for them and then tried to deal with my newborn.

i know that’s brutal, and probably isn’t what you want to hear

Epilsepy Action UK have been very helpful for my queries. I am lucky in being well controlled. When did you last see a neurologist? And have you managed to work out any triggers? Careful scheduling of appointments might help

I was diagnosed as a teenager and to say I rebelled against the diagnosis was an understatement. I caused my parents so much anxiety because I refused to take my medication and continued to live a life style that wasn’t conducive to seizure control. I didn’t start taking it seriously until I was in my early 20’s and after a few years of trialling medication my seizures did stop. I then went seizure free for just over 10 years but sadly they came back a few years ago, my heart broke and my life has had to change dramatically. And if things weren’t already bad enough it now looks like I may have to give up the job I love too ☹️

Sounds like a medical alert dog might be something to look into?

snap judgement, I was assuming you were tonic clonic. I think with absences you’re more likely to be at risk of your patients thinking you are off your face on recreational pharmaceuticals .

I was in this line of work for many years whilst my seizures were controlled but now they’ve come back and I’m having re-evaluate everything.

I see/speak to either my epilepsy nurse or neurologist every 3 months.