To think sister’s GP needs to investigate this further?

[butidontwantthis]

Sister is 28, has autism and anxiety issues and struggles a lot .

Lately she’s been having funny collapses’ . Reports Deja vu; funny smell, bitten tongue and incontinence . She’s waking up in the morning with the former two .

Witnessed once by two carers who said it appeared seizure like . Dialled 999 who said ambulance not needed as she came round during call .

GP says it’s all anxiety - has not actually seen her since December 2019 .

Did bloods, normal .

Said it’s almost certainly anxiety or some sort of attention seeking . Said if it was a sort of seizure it’s probably some sort of epilepsy and won’t harm her .

Sister and carers seem satisfied with this response .

I’m not . For context, DM has seizures, second cousin is epileptic, first cousin is severely epileptic, DF has a mild ID, mum also has a specific learning difficulty, and we have been talking about genetic screening of some sort .

Sister had repeated febrile convulsions in childhood up to about age 8, and then had a full blown generalised seizures suddenly at 16 . Never looked into beyond talking to a paediatrician back then - who said probably a one off .

I am less than happy with GP’s response that it’s attention seeking or that epilepsy is harmless !!

However - I’ve not got a power of attorney as can’t afford it, and we weren’t sure how much capacity sister actually has ! Social work told me not to bother pursuing .

What can I do? Can’t phone her GP, I have spoken to her carers but not sure what else I can actually do?

She lives in supported living or I’d be taking her to the GP myself .

Does your sister have the capacity to make her own decisions, does she have a Guardian. Does she want you to speak on her behalf. A febrile convulsion is not the same as epilepsy, does she have a medical illness as well as autism. You can contact her g.p with your concerns. You cannot demand treatment for her. If she doesnt have capacity you cannot apply for poa, you apply for deputyship. Who normally helps her make decisions.

How many of these episodes has your sister had and how frequent are they? I’d start by keeping a record and yes absolutely ask the GP to take it further. Can you ring when with your sister?

With her consent

OP. So you've got family history of epilepsy and symptoms of night time seizures. I admit, it sounds a lot like seizures. If you're sister is willing, get a second opinion. Seizures can be fatal sometimes. Those who suffer from night and sleep seizures are even more at risk from sudden death syndrome. Problem is, getting sister to want a second opinion too. Can you talk her into it?

@DogsSausages

Does your sister have the capacity to make her own decisions, does she have a Guardian. Does she want you to speak on her behalf. A febrile convulsion is not the same as epilepsy, does she have a medical illness as well as autism. You can contact her g.p with your concerns. You cannot demand treatment for her. If she doesnt have capacity you cannot apply for poa, you apply for deputyship. Who normally helps her make decisions.

Normally it’s her carers . She has a social worker, learning disability nurse, LD psychiatrist, GP, and carers (both home based and community stuff) all involved but most of that’s gone down to Zoom/phone calls now .

She doesn’t have guardianship, POA etc no - we were told it isn’t needed, that I’d have to record every phone call with her, record all money things etc .

She’s had 4 during the day and reports 4 or 5 overnight . 4 episodes I remember in childhood with one seizure .

I’m not sure what she wants tbh, she rings in a panic saying she’s unwell again, then when I suggest ringing GP, 111 (even if I ring them and they call her back) she kicks off shouting and swearing that she’s fine, doesn’t want any help . Carers are saying they’re wondering if she’s read up on epilepsy as she’s almost reporting the symptoms verbatim (Deja vu, olfactory hallucinations etc) . She has done this before - claimed to have dysphagia and it was apparent she had googled and knew the symptoms to get people worried .

Care manager has said they’ve tried to play her bluff sort of and suggested she go to A&E at which point she panics and says she’s fine . It’s so hard to know what to do .

They did say if she was to be diagnosed epileptic she might lose her support package and need upgrading to higher support needs - which doesn’t sound good but maybe necessary .

Will email care manager again (as she’s claiming again to have had seizures overnight) and ask if it would help if I rang GP .

Who said she doesnt need guardianship, if that's a medical decision then they must say she has capacity to make her own decisions. Maybe her LD nurse can help. If she is epileptic and needs higher supported care that is the best way forward.

Hiya, I'm a GP. This should definitely be investigated. Referral to neurology is in order. And safety advice for potential seizures eg no baths/ showers alone, no driving (although I guess she doesn't do that) I would speak to/ get her to speak or whoever has authority to make decisions for her to another GP. And if she has another episode, consider A&E. Hope she is okay and you get some answers soon.

It could be anxiety, it could also be epilepsy. Without being looked into, how can anyone (incl GP and other agents involved in her care) know? They did bloods, what were they looking for with that, that could tell them whether epilepsy or not?

Are you able to have any kind of contact with her OP? Is she on any meds for anxiety?

Social worker (re guardianship) , they said carers better placed to support her . I don’t totally understand how it works (Scotland) - said if I didn’t take guardianship the council would, so I presume they have final responsibility for decisions . I should have looked into it more when she first moved out of Mum’s but am also mums carer, and my gran’s - never have had the time or anyone to advise me on what should/shouldn’t be happening .

Certainly I know council have financial responsibility for her, she keeps detailed expenditure sheets that get kept afaik . Every purchase (beyond negligible stuff and normal
groceries etc) has to be justified by someone else etc .

Yes I agree if she needs more support and needs moving then that’s best, just a bit worried - she’s not coping as it is and don’t want eg them to shift her into mental health inpatients or something .

@CrappingMyself

It could be anxiety, it could also be epilepsy. Without being looked into, how can anyone (incl GP and other agents involved in her care) know? They did bloods, what were they looking for with that, that could tell them whether epilepsy or not?

Are you able to have any kind of contact with her OP? Is she on any meds for anxiety?

She’s on a lot of meds - SSRI, antipsychotics, antihistamines, painkillers, etc . Did wonder if it’s side effects of the antipsychotic/SSRI bouncing off each other .

Bloods were apparently to rule out anaemia - as that runs in family too and I’m just diagnosed myself . Think they were treating as vasovagals but never encountered tongue biting and incontinence with that .

I’ll email her care manager this afternoon, and ask if they can phone GP again, explain my concerns again - and will ring social services and ask someone to contact me .

Contact - we FaceTime twice a day, haven’t been allowed to see her face to face in a long time although suspect if I pushed it they might allow . She’s also terrified of covid so reluctant to have any visitors at all sadly .

Make sure the GP does blood tests for B12 folate, ferritin, fbc and full thyroid panel and get a referral for neurology.
The 'carers' are working on the assumption that 'calling her bluff' is appropriate. They are acting on the belief that your sister is attempting to get attention fraudulently - if they are wrong, imagine how frightening this will be for your sister!

If you know the name of her LD Psychiatrist I'd phone their secretary or write to them with details of what is happening. Whether or not this is epilepsy, anxiety or medication side effects she needs to be assessed by a specialist- the GP isn't qualified to make that distinction and should have either got in touch with her consultant or referred to the First Fit clinic. The psychiatrists may not be able to tell you info without her consent, but you call tell them your concerns.

Write to the GP saying you are doing so because they might not be aware of the family history of seizures, and give them the details. Say you're not expecting them to discuss the case with you but you felt they needed to know.

Also ask to see your sisters current care plan and request that some focussed positive attention is exactly what your sister needs and any negative attention such as ignoring and discouraging must be stopped immediately.

My husband has epilepsy and it started with overnight seizures, he was early 20’s. It’s maintained very well with medication. In your sisters situation it may mean medication twice a day and crack on or may need more help.

Just a wee update - different GP rang her carer this morning . She’s been referred to a first seizure clinic for review and further investigations, rule out other causes before they call it anxiety . Waiting on her care manager emailing me back and social worker but think that’s good news so far - that they’re looking into it properly . Meantime they’ve said if it happens again to dial 999 . Hopefully not needed .