NHS - should I expect more for my daughter?

[LegallyLoopy]

My adult daughter has been mentally unwell for 2.5 years now. She has made small progress but she’s still not the same person she used to be. Too many things have happened to write them all down but she’s non verbal now (used to talk normally), has no interest in the activities she used to take part in, won’t get up unless we help her stand etc. It’s mostly anxiety driven as she had a breakdown a couple of years ago and ended up being sectioned for 7 months.

She has been on Mirtazapine for 2.5 years and her psychiatrist admits that her presentation is unexplained and that we have not seen much progress. Yet when I mention about trying a different medication, the psychiatrist says her current medication is working. He said that changing medications will not change anything. I don’t understand this as there are a wide range of antidepressants available that also help with anxiety and some people may respond better to some medications than others.

I have also raised numerous concerns such as her episodes of uncontrollable laughter with no apparent trigger for it. I’ve asked about the possibility of Pseudobulbar effect but the psychiatrist did not even have a discussion about it with me. This laughter (which can happen 20+ times a day) is not being investigated as to the cause. All I am told is we will monitor it, yet we have been monitoring it for almost 6 months.

I also raised the question whether she needs to be referred to a Neurologist, just to make sure nothing physical is happening in her brain that is causing this. Again, this went unanswered.

Most recently, I had nurses and the psychologist tell me to stop giving my daughter her doses of Lorazepam and see how she goes. This was in contradiction to her prescription from the psychiatrist. I did it, and it made my daughter quite unwell. I subsequently read that if someone has been on benzodiazepines for a long time, they shouldn’t just abruptly stop them, it should be reduced gradually. I wrote an email with all my concerns surrounding this, which was just ignored.

Is my daughter meant to be getting better care than this? It just feels like no one is willing to explore the presenting issues and my concerns and questions constantly get ignored.

I’m sorry OP this sounds like a really difficult situation. Is it possible that the referrals and explorations you are asking for need to go through a specific person/place, and so if you are mentioning for example a neurology referral to the psychiatrist they may not be able to action that? Who is ultimately in charge of her care, a consultant?

We had this issue with a relative, his care was scattered among various departments and essentially they could all only act within their department so any further testing, referrals etc we wanted done we either had to go back to the beginning and get a GP referral for that or go to the consultant who was ultimately in charge of care and ask there. Is this something you have already tried? It may just be the case of you’ve been knocking on the wrong doors?

As an aside though for mental health support the offering isn’t great and you’d receive far better care, far quicker, if you are able to go the private route.

Could it be full autistic burnout? Not all psychiatrists recognise ASD well particularly in women. It sounds incredibly difficult for your daughter and you as her support network.

I encountered a similar case, with some differences, about 15 years ago. After working in psychiatry for decades i'd never seen anything like it and neither had my colleagues.

It was a man who had been like it for years but as it had happened gradually, the family just dealt with it and it was only when the parents passed away and his brother got a GF who said 'WTH is going on here?' and convinced the brother to seek a referral to mental health services.

We highly suspected something neurological and after the man was sectioned, he had a battery of neuro tests which identified nothing. So we thought maybe an acute depressive state and tried anti-depressants. Nothing.

Eventually a Psychiatrist suggested there was nothing to lose in trying an anti-psychotic and the man made huge leaps. He didn't fully recover and did end up in supported accommodation but was still hugely improved.

I'd make a complaint/ask for a second opinion.

Thanks for replying. It’s her consultant psychiatrist who is the responsible clinician overseeing her care. He said to me we need to take a holistic approach, which I agree with but I admit that I do find it frustrating that these issues aren’t explored as to the cause.

I have thought this from the beginning as she has a lot of autistic traits and I have suspected it since she was little. She was diagnosed with a moderate learning disability when younger but autism does run in our family. I mentioned burnout to the health professionals but they were adamant that they would know if it was that.

I am considering whether to transfer her care to another area (we are right on the border of counties) but I worry if this is the best thing for her. She’s in the process of having new carers start working with her, which are supported by the current mental health team. I don’t want to put a spanner in the works for her but at the same time, I think we are ready for a second opinion.

can you get a private psychiatric evaluation done? Often the NHS do the very basics and not a lot more

I wouldn’t even know where to start to be honest or how much it would cost.

She’s having yet another laughing fit right now. Second one this morning and it lasts 10-15 minutes each time. No one will investigate it. Is it worth referring this problem to the GP? They will likely say it’s the psychiatrists remit but she is suffering and I feel like no one listens.

This. I’d also be pushing for an mri and eeg and if they refuse go private

Thank you! When she was first admitted into hospital, I asked for brain scans etc but they said it wasn’t clinically indicated despite her having a major shift in personality.

I think you have to pay op. Full psychiatric assessment plus scans and a bit more, I imagine £6 to £10k. I'd take a bank.loan or remortgage if I had to.

I would absolutely push for these tests. It’s really important and I’m shocked they haven’t been more proactive with investigating symptoms I hope you can get some answers and the support you need

I don’t have a mortgage and I’m insolvent so would not be able to get a loan. I can’t afford that kind of money unfortunately but I would pay it if I had it.

@LegallyLoopy have you noted @YourLuckyPlumJoker 's reply? It's at 10:56.

Then @LegallyLoopy I would suggest that youbraise your concerns with PALS, see if your local Healthwatch can help advocate for you and keep your MP copied in.

Video the laughing fits and anything that's intermittent behaviour and concerning - and diary them - time, date, what was going on before and how she is afterwards. The more info you have to hand next review with the medics the better as it might help identify triggers or patterns.

I know this will be like getting mountains to move (most of my professional grey hairs have been caused psychiatrist-wrangling) but it might be worth asking for a MDT call to get everyone together to discuss things - rather than relying on information being communicated (badly) between professionals - cos the NHS can be shite at communication.

Presumably this is the learning disability team. It does not sound like something in the wheelhouse of general adult psychiatry. Does she have a diagnosed cause for her LD? I think you should ask your GP to separately refer her to neurology. The psychiatrist cannot do that and pseudobulbar palsy is a neurological diagnosis (and a very rare one at that)

Learning disabilities or difficulties?

People often confuse the terms but they mean very different things. Learning difficulties could be dyslexia or ADHD but learning disabilities is intellectual - IQ.

Is your DDs Psychiatrist and team from general Psychiatry or a Learning disabilities psychiatrist and team?

That giggling you describe again can be an autistic thing. My son has loops of thoughts that can take significant periods to process compared to NTs and he can laugh and laugh if the processing loop is funny.

Also epilepsy is comorbid in approx 30% of ASD cases so neurology is still worth looking into.

Full ASD burnout can be as severe as you are experiencing it might be worth reading up and seeing how others who have experienced it have recovered and see if some suggestions help your daughter.

I also wondering if the laughter could be seizure related? Entirely reasonable to press for more care and diagnositics. Seizures could be treatable.

As a previous poster said, there is strong links between epilepsy and autism. It could be worth speaking to some of the condition specific charities for advice on navigating the system.

One final thought - does she have a social worker?

Aaah having seen the moderate LD comment - just (as someone who works for an LD team) be careful because our service has an 8 week waiting list for my particular discipline, but the neighbouring county has a 1 year list for the same service... and, as we're commissioned based on GP postcode, we wouldn't be able to pick up someone from over the border - which, as someone who lives ON a county border, I fully appreciate is a fucking pain in the arse.

She absolutely needs a brain scan. With the laughing fits and the personality change and becoming non- verbal, I’m amazed she hasn’t had one. I think this would be the priority for me- I would push and push. I wouldn’t be happy with their responses so far at all, it sounds so frustrating for her. Have they seen her laughing fits? If not, can you film them for evidence?

My first thought too was ASC.

What does she do day to day? You say carers are getting involved, what will they do with her?

Is she presenting as depressed?

What kind of work is the Psychologist doing with her?

Could the laughing fits be epilepsy? I know seizures can present in lots of odd ways. And they way you describe them makes me wounder? Might be worth asking GP and getting a referral to neuro that way?