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.

I don’t think it’s fair to put someone in that position without warning, especially as you know they are already stressed and tired and likely have a baby with them at the same time. However, if someone told me they were epileptic (or maybe even just they ypu
have a medical condition) and in the unlikely situation that you had a seizure that these are the steps to follow (call ambulance etc) then I wouldn’t cancel the service. It’s possible they may
choose to have the service at a time they aren’t alone. But they need
to make the choice, surely? I’d try it out, if
you get cancellations than have a rethink.

I lived with someone who didn’t tell me they were diabetic and I came home to them having a hypo where they needed help. I had no idea what was going on and it was really scary.

You poor poor thing. I’m in the fear of that.
My neurologist said that once you lose control it’s nigh on impossible to get back - I was really worried about my medication and pregnancy (not sodium valproate though :) )
The epilepsy nurses are usually super clued up though ?
it does sound though like you’re going to have to make a tough call. Does it need to be face to face? Is there an equivalent something you can do remotely from home? Obviously you’d miss out on body language and cues of total
maternal non cope manifesting via the house
if you were likely to see the same new mum more than once though then just mentioning it in the first session would probably be enough

Have you considered offering your services from somewhere like a Family Hub so there would be other people around in case of a medical emergency but also a welcoming, comfortable environment for new mums to attend?

I did consider working from an area where I’m not alone and for mums to come to me, but the vast majority of the mums I work with have babies under 2 weeks old and the main point/benefit of my role is that I provide my service in their own home environment. I would lose a huge, huge amount of business if it meant mothers had to travel to another setting in order to see me. Based on my role it does have to be a face to face, in-person Consultation. It’s such a mess.

One question that no one has asked is do you have any contact with the babies while in the home?

I think it’s really important that you risk assess what harm might come to the child if you had a seizure. I assume you never are holding or carrying the babies or in a position where you are standing over them or holding a piece of equipment that could fall on them or could knock the mum over?

I think this is quite a risky role to be in and you need to seek some legal advice. Do you have public liability insurance that would cover any injuries or damage caused by you having a seizure? Is the sort of work you do something you’d be able to do in an employed capacity? As in, could you work for the NHS in a community setting where you are not a lone worker?

GPWM @mindutopia

It’s been 6 years since my seizures returned and despite God knows how many drug dosage increases and adding new drugs to my medication regime I’m still not controlled again. I’ve lost all hope of ever getting them under control again to be honest ☹️

In which case most, but not all, will have the option to have someone else in the house. Maybe you could ask if they’ll have someone home, and if not take it from there.

Yes, I do handle the babies but for minimal time. I probably only actively handle them for less 5 minutes in total (spread across the 1.5 hours) and for the rest of the time they are with the mother.

I used to work for the NHS and do this role in a hospital setting but the hours, the pressures and the stress of NHS made my health deteriorate so much. Since leaving the NHS my seizures have reduced dramatically (they used to happen at least once a fortnight) but the worry is always there.

I wouldn't write off using a community location so quickly especially if it's that or nothing it's worth trying. New mums are told to get out the house and have a walk early on, I used to take my first baby to the library to be weighed at the health visitor drop in clinic every week from newborn onwards and would queue in a room packed full of mums and new babies, same for the lactation/breast feeding support drop in and similar things. You might find enough people will do it to keep you in business and also safe, or find a slightly different client group. There must be other options than giving it up entirely.

The HUGE majority of mothers I go and see do have another adult in the house, usually the father.

I was a Social worker for 26 years and developed epilepsy about 8 years ago. Honestly, I think you should just tell them. I told everyone I worked with, saved me doing it after I'd had a fit.

Its was fine.

Sorry, this is not an answer to your question but around your meds. I have very similar sounding absences and my neurologist has been reluctant to provide rescue meds when my absences start to cluster. I do now have rescue meds but I'm not sure they are working their best. A typical cluster for me could be 400 or 500 in an hour which has then ramped up into a tc seizure. Which meds do you take?

Or, see if 'access to work' can help you with a person who can go along with you to these meetings.

I think you mean ‘people with epilepsy’ not ‘epileptics’

I had seizures as a teen and thankfully grew out of them. Sorry but no I don't think you should be lone working with parents and young babies, with the possibility of seizures. Even if you had a short one and were fine after, it's unkind to make a new mum deal with the trauma of that, especially in her own home. If you were in a clinic setting where the mother could simply shout for one of your colleagues who would know what was happening and make sure you were fine, there'd be no problem, but as is that's just unfair. Is it really not possible for you to deliver your services from a setting the parents would go to anyway like a Children's Centre or health clinic?

You would just walk into people’s homes and tell them you had epilepsy? What was their reaction?

The problem is that parents pay for the service because it’s a home visit, that’s the main appeal. If parents want a home visit they will just pay for someone else to go and see them rather than travel to another venue to see me.

I tried this, but Access to Work said they can’t accommodate the type of work I do as they only provide services for people who travel to set venues on set days, so that the cars and medical staff can be booked in advance. Whereas I go to houses all over the place at very late notice and at various times, usually within 24-48 hours of a parent calling me.

Hi OP, that sounds tricky, I feel for you. I also have long-term health conditions (including the one in my username) and I am self-employed. However, I am in a regulated healthcare profession and regular monitor my conditions for impact on my work and have an external supervisor (not manager) and my professional body I can talk things through with. Do you have a supervisor? Take care xx

I think you need to consider what is safe for you. Would you rather work with people who knew what to do if something happened?

The other thing I can think of is Access to Work, I'm not sure what support they can provide, but they are the government scheme for people with disabilities and helping them stay in work.

I Was dx with a condition and there's definitely specifics of what I will and won't do workwise now, but I was already in the career before the conditon. Safety only becomes more important to you as you get older.
X

Anyone at any time could have a medical event, whether they have epilepsy or another condition, or are perfectly healthy! A healthcare professional could slip on the way in and knock themselves out, etc.
You can't predict if or when a seizure will happen, other than it is not very often. You also can't prevent it happening - so the fact you're worried is almost pointless as it could happen or it could not.

I'd expect that anyone witnessing a seizure would call you an ambulance. I really don't know what else they would do in that situation. The same as If any other medical emergency happened. The paramedics would lead on the situation.

If you have a family member that drives you then presumably you're not alone, and they could come and help if you had a seizure?

What do you think would help your anxiety? Do you have any warning at all that you're going to have one? If so, do you have an emergency button you can press (I am a community worker and have one of these) or can you alert your family member in the car? Would you feel better telling your mums about your condition and what to do if you did have one (though this could cause unnecessary anxiety in them, especially if it's unlikely to happen).

Do you have triggers? Can you have a reasonable adjustment put in place so that you are less likely to be triggered in someone's home (eg if tiredness is a trigger and you're feeling particularly tired, to pre -emptively cancel visits. Or if heat is a trigger, to keep a cool pack on you in summer, etc etc)

Well, yes, after all the greetings and stuff was over. Slip it in there at the end.

I agree with this tbh - you could have a lanyard with what to do on it as other PPs have said - but after introductions you could just say something along the line of: I will just inform you before we move on, that I do have epilepsy. I don't have seizures often - but on the very off chance that I do, please don't worry - just make sure I am safe and call an ambulance / read my lanyard/ (whatever advice you'd give them). I tell all my clients this just to be on the safe side.

As far as I'm aware you don't do anything for seizures (I mean while you await medical help) other than leave the person on the floor / in a safe place and move anything that could hurt them away from them, until it subsided then put them in the recovery position.

My standard daily meds are Lamotrigine, Levetiracetam and Ethosuximide and I have Clobazam as my emergency meds.