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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

wwyd - MH Crisis not being taken seriously by NHS

12 replies

filipafellipa · 18/02/2018 19:40

Posting for traffic.

My dad has a long term serious undiagnosed MH condition that rears its head every couple of years with no successful diagnosis to date.

My armchair diagnosis is something like bipolar disorder with additional stress induced "absence" seizures, I know that might not be helpful to diagnose this way, but we're desperate and still waiting on official diagnosis and support as it's never happened over nearly a decade.

Initially presented several years ago as massive seizures all through the night, followed by strange behaviour - e.g. up all night for a couple of weeks, (spending 4 hours smoothing the bed clothes, up all night picking tiny bits off the carpet)... grinning manically like he's posessed, joining in like a child when at kids event, running into random peoples houses, stripping off in inappropriate places, wetting himself, etc etc. These episodes last a week or two then subside and don't appear again for a year or so and seem to be triggered by stress. My mum said she now recognises some of the recent symptoms (staying up late) happening gradually more over a couple of months until it hits crisis point.

We've had a handful of episodes over the last few years or so but due to lack of diagnosis, no treatment- just waiting until it passes and everyone very stressed out during, despite visits to A and E, GP he is just sent home again and told to take his seizure drugs. He is a danger to himself when he is undergoing a seizure.

initially he was given epileptic drugs for the seizures (which still happen) (and is still on the same meds today) - a subsequent visit to neurologist eventually said he was not epileptic (seizures are real but stress induced not epileptic). This never got any further than the neurologist e.g. no referral to MH services, apart from some eventual group therapy that he didn't make it to and was never followed up. (he is not a responsible adult and despite encouragement cannot be made to pursue his condition as he seems mostly unaware of its severity and is very stubborn)

GPs have been absolutely useless, turning him away, or sending to A and E, who just send home again...

At the moment he seems to be in "manic" phase bought on by recent stressful events, intermittent "seizures" e.g. frozen a few minutes at a time, staying up all night, not eating, being sick, strange behaviour.

We took him to A and E, the MH person saw him and have referred him to a psychologist but said it could take "some time", despite seeing him having these absence seizures in her presence.

This could mean weeks / months / days??? But the crisis is going on now and we need help.

They would not prescribe anything - no diazepam, no lorazepam (he's been prescribed this in the past) and just sent him home again. He's completely in crisis mode and we don't know what to do.

My mum has a job to go to and can't stay at home as his carer, maybe a day off work but he needs more.

Any help or ideas of where to turn to is very welcome. We've been pulled pillar to post by the NHS with no-one seeming to take any responsibility for furthering his diagnosis nor providing the crisis support / drugs he needs right now.

thank you

OP posts:
gamerchick · 18/02/2018 19:45

IME due to the awful state of mental health services one of the only options available is to draw up the bridge. You’ll have to effectively abandon him so social services are forced to act. Then when they put pressure on you to ‘take responsibility ‘ (they will say this) you say no and stick to it.

Not a palatable option I know and it’s a disgrace it comes to that.

Dljlr · 18/02/2018 19:48

I'm so sorry, I have no advice, but I've been there with my MIL and I know very well how lonely and frustrating this is. She was a danger to herself and others but we couldn't find anyone who wanted to help. The last time she attempted suicide she was discharged whilst still totally 'out there' (screaming that the FBI had put a tape in her brain, constantly stripping off, tearing her nails down her face) because the hospital said they couldn't risk another suicide attempt whilst she was on their premises. She finally recieved a diagnosis after 11 years (a specific type of schizophrenia) but died in the days immediately following. So I don't even know if her having a diagnosis would have resulted in an improvement in her (non-existent) care.

I guess, if you haven't already, you could try contacting a MH charity for some advice (and support for all of you). I'm sorry to give you nothing but bleak experience, but wanted you to know you're not alone. I really really really hope that things improve for you all and your dad gets the help that he needs. Hopefully someone else will be able to offer something more constructive than empathy. Flowers for you all.

Fallofrain · 18/02/2018 19:51

Hello, I have some (limited) experience of the system. Firstly how old is your dad? Over 65 is likely to result in him being referred to the older adults team where it might work differently?

I'm interested that you called it seizures? Has he had a Neuro investigations? New seizures is unusual and if his difficulties are caused by this then not much mental health could do I would think?

Secondly until your dad has limited capacity to make decisions diagnosed by his gp or the mental health team then it's up to him really to chose to attend or not. They won't chase up or force him to attend if they think he is able to make that decision.

It might be worth thinking about what kind of help you think he needs or are expecting because that can help you steer the process

UbiquityTree · 18/02/2018 19:51

This reply has been deleted

Message withdrawn at poster's request.

Fallofrain · 18/02/2018 19:54

Oh and normally referrals require either contact in 5 days or 27 days depending on the urgency. You may be able to call the team to stress the urgency though

MMcanny · 18/02/2018 19:57

How old is he? Surprised he’s not been given an antipsychotic. Sounds similar to what I experience and has been diagnosed as reactive psychosis. Took about 7 years to get a diagnosis though. Has he not been referred to a crisis team? I can only imagine his symptoms present as mild at hospital or they feel he has a lot of support. My family have been told I should be hospitalised before now. However I never have been as they have always been able to care for me and my children at home and I have a very good understanding of my condition so take meds at first sign of symptoms. It’s caused by stress.

Yawnyprawn · 18/02/2018 20:05

Have you contacted Mind or any other MH organisations in your area? They may be able to organise a support worker to come and help you navigate the system so he can access the care he needs. They can also provide ongoing support. This is a situation where you need advice from someone experienced in MH and who knows the services available in your local area.

Itis6oclocksomewhere · 18/02/2018 20:06

Have the seizures been diagnosed as non epileptic seizures?
My DD has these. Luckily hers have stopped after intervention at GOSH, but I know that the help for adults with the condition is lacking.
My daughter had seizures which presented as faints and could be out for up to 5 minutes.
There are some groups on Facebook for non epileptic seizure sufferers, we are on a group called FND Action - Non Epileptic Attack Disorder UK. The condition sometimes gets called NEAD or NES.
Unfortunately the condition isn't always known or understood by all medical professionals.
I really hope that you get the help you need. I'm ashamed to say that I was the pushiest parent ever, I just kept knocking on the doors of all the professionals until they realised I wouldn't disappear.

filipafellipa · 18/02/2018 20:22

thanks everyone for the great advice...

the seizures were checked by a neurologist ages ago and diagnosed as non-epileptic and stress-induced but it didn't get any further

also at A and E they said the same thing today about the seizures e.g. not epileptic

he is 62 years old

MMCanny the reactive psychosis sounds very much like it could be what it is. I think if it is it could need antipsychotic medication - he certainly needs something e.g. diazepam or something at the least. Surprised they won't even prescribe that!!

I think my mum is not kicking up enough of a fuss so I will do a little phoning and digging tomorrow to see what other support we can get to help us through. I am not local but can get on the phone!

OP posts:
Tistheseason17 · 18/02/2018 20:30

Really sorry for you, OP Flowers
Definitely contact local MH organisations and Carers Support.
There simply is not enough funding to MH. It breaks my heart EVERY day. If more NHS funding went to MH and social care the system would be so much better.

filipafellipa · 18/02/2018 21:09

Thanks, Tis and all... really good to get some thoughts about how I can help and a little empathy.

Just to clarify when I use the word "seizure" there have been occasions of flailing arms and legs like an epileptic fit, and other times he's just been frozen staring into nothing for 5 minutes or more or with a shaking hand or whatever, like a kind of absence seizure.

this is separate to the strange behaviour, hallucinations, manic behaviour that is also displayed around the same time over a period of up to a few weeks

OP posts:
Itis6oclocksomewhere · 18/02/2018 21:41

I really feel for you all Thanks
As I understand, non epileptic seizures (NES) present as all types of epileptic seizures. They don't look any different, but the experts can probably see the difference. This is why it is so hard for it to be diagnosed sometimes. My daughter only has 'faints' with sometimes mild movements but I know other people who have absences or seizures where they are shaking. She had to have EEGs which showed that her brain activity was fine and other factors which pointed to NES.
We are extremely lucky that she is 14 and was able to access help at GOSH. Her seizures are triggered by cognitive difficulties and tiredness.
I hope that the groups others have mentioned are a help. MMcanny's thoughts about the reactive psychosis do seem to fit well.
Fingers crossed that your phone calls go well tomorrow.

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