Dsis, 27, multiple mild-moderate learning difficulties and autism, lives with support 9am-10pm and overnight telephone access to carers who sleep over in downstairs flat . All assessed as safe by GP, MH and LD nursing team etc .
Christmas Eve she was texting and phoning me saying she was anxious and unhappy and upset at spending Christmas with carers and flatmate due to covid restricirons . This was 4pm, she was totally fine, didn’t sound confused or disorientated or anything .
4.30 she phoned saying she had a seizure at 3.30 and had woken up on the bathroom floor . Claims to have bitten tongue, been faecally incontinent and sore arms and legs . Flatmate (who has Down’s syndrome) did witness her lying on floor but didn’t call
for help . Flatmate told sister at 4.30 that she’d seen her lying half an hour on the floor - sister then contacted me .
She would have emailed her carer at 3pm - sent something that’s not decipherable except for her saying she felt strange .
She has had a seizure before at age 16/17, and several as a child (febrile ones) but not for years and years . They never diagnosed epilepsy . However - mum has seizures regularly (also undiagnosed - thought to be NEAD), cousin has epilepsy, as does another and there’s a possible history of inherited arrhythmia (we are all regularly screened via ecg) .
She’s on a shedload of meds (sister) eg antipsychotic , SSRI etc.
Sister wasn’t tested much re previous seizures, did see neuro and had genetic tests in case fragile x but fine . No MRI, CT, EEG etc .
Carers on xmas eve contacted GP who said probably did have a generalised seizure - no idea why, but totally unconcerned and said she’ll be fine .
She doesn’t have a POA etc as was always told not needed - she has capacity most of the time .
I’m thinking GP’s response was a bit shit as was carers’ (who immediately said they can’t help her if she’s having a seizure - not funded for 24/7 care) and thinking she needs a proper check up by doctor and? referral onwards . And probably her care needs reassessed !!!
What can I/should I do? DM very concerned but not fully able to sort this as has her own disabilities unfortunately, so needs to be me to do something I think . Maybe it wasn’t a seizure but something doesn’t tally up at all .