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.

@YourLuckyPlumJoker Thank you for sharing this story and I glad he’s doing better now. Daughter is on 2.5mg of Olanzapine but it’s not really made much difference. I asked for a dose increase but the psychiatrist won’t unfortunately. She has a learning disability (not difficulty) and has cognitive deficits in all areas although prior to becoming mentally unwell, she was considered high functioning.

@TorturedParentsDepartment I have videod and recorded them which have been sent to psychiatry. I keep strict logs of everything and how long the episodes last etc. All they say is we will ‘monitor’ it but it’s been 6 months so how long are we just going to monitor it for? The suggestion of noting what was going on before and how she is after is a good idea, thank you. We have weekly MDTs but the psychiatrist is never on them.

@ThePure yes it is the learning disability teams and LD psychiatrist. No diagnosed cause for her LD, she was diagnosed quite young. Her father has an LD though also. I didn’t realise it would have to go through the GP for a referral to neurology, I will contact them on Monday.

@Aintnomountainlowenough I didn’t know the laughing could be an autistic thing. She’s only really been doing it since becoming unwell 2.5 years ago. She’s had an autism assessment which concluded in January but I can’t seem to get any results from it so I have no idea whether she is autistic or not. I didn’t know that about epilepsy. Can seizures present as laughter? I always imagined it being full on shaking etc and a really obvious seizure.

@Aknifewith16blades yes she has a social worker, who is really great. I am going to push for a neurology referral and for more tests to be done. I don’t feel it’s right to just leave her to it and not investigate a cause.

@LittleLabrador I’m amazed she hasn’t had one too! I pushed for this quite hard from the beginning but it was dismissed. Only problem we have now though is she won’t leave the house due to her anxiety, so getting her to the hospital for scans would be a huge deal and she would likely have to be under GA to have these scans done as she would not lay there and allow it to be done. I’m not happy with their responses either, I feel my concerns get fobbed off all the time. They have heard her laughing fits as I have recorded them and sent them to psychiatry but all the say is we will continue to monitor.

@WickWoodAll she will do is lay on her bed on her phone. She has had some days recently where she has got out of bed on her own and walked around. She even went downstairs for the first time in a year. There are recent improvements. The carers at the moment are only doing the hypoarousal strategies that psychology have directed. We haven’t got to the point of personal care yet as she won’t even stand up in front of them due to her anxiety. I had to speak up about the psychological interventions as they were putting ice directly on her skin which I found rather cruel, especially with her being very sensitive to temperature, not being able to give consent and not being able to tell them to stop. They use a fan now.

https://www.epilepsy.com/what-is-epilepsy/seizure-types/gelastic-and-dacrystic-seizures
Might be helpful

Wow…that describes my daughter perfectly. She makes odd noises interspersed with the laughter.

If it turns out to be this, can it be treated?

Is this dangerous if it is that? As in, does she need emergency treatment or can it wait for GP on Monday?

No idea unfortunately. is there any possibility that she might have had sezuires since childhood, any vacant episodes or times when she has done odd noises and odd movements but been zoned out during or after? That would help GP to think it would need looking at more.

It's been happening for ages so waiting till Monday is unlikely to make any difference
Please don't Google seizures too much ... you will end up looking at the very very worst case thing and it's very unlikely to be that!! Seizures are more common in LD and I think it's common for people not to recognise them. I have had a vacant sezuire in front of a neurologist at work and they didn't notice at all, only a very close friend/colleague noticed

I sent an email to the team involved in her care requesting a transfer. The GP told me it’s her mental health team that has to do the transfer of care. We live right on the border of counties and the mental health team said I have to use the team under the same county as her GP. Is this correct that her GP has to be in the same county as where a referral is made?

They also said that if it’s a second opinion I want, they have other professionals in their service who could do that. They then suggested that I could make a complaint.

I replied stating what I would like a second opinion on (the laughing, her medication etc) and that I did not want to make a complaint at this time, I just wanted my concerns addressing.

I always feel like I’m being disrespectful by questioning things even though I word everything politely. I sometimes feel like I shouldn’t be speaking up but I have to for my daughter.

Oh goodness I so understand your situation. My son has been sectioned and on a secure ward for the last two years. We do the anti psychotic shuffle every few months to no effect (schizophrenia) and he takes part in no activities, has no therapy, just stays in his room. Recently he was put on clozapine but had a cardiac ‘event’ and this had to be discontinued. I have really tried to engage with his team but I feel they just pay lip service and nothing really changes. They have now put it to my son that it might be better to deal exclusively with his dad rather than me and he agreed (because he seems to blame me for his sectioning). It’s just terrible feeling like you’re banging your head against a brick wall and time marching on and leaving them behind. I would absolutely insist on your daughter having further investigations. The GP might be more forthcoming. We suspect autism in my son too but they flat out refused to screen him. It’s so hard.

could you research local mental health charities ? Most have advocates that work for them . The mental health advocate will voice your concerns and fight your corner . They have such a knowledge of how the system works xx

I should add I’ve been sectioned and under services . It’s frustrating as they don’t have the time/resources so will rarely investigate beyond the minimum . We had to pay privately. But then I’ve found some absolute diamonds with the NHS mental health services who will fight and open doors and it’s only with that support that I have managed to gain access to life changing treatments . Good luck xx

Yes it’s true that services are organised depending on what GP you are registered with. You would need to register with a GP in the other county if you want her care transferred

Why not ask for a 2nd opinion from a different consultant within the service as it seems you are dissatisfied with the current one?

I would also put in a complaint via PALS too given you have asked informally and had no resolution

@LegallyLoopy Epilepsy generally is treatable and definitely it would be important for your daughter to see a neurologist with those symptoms. I doubt the other mental health symptoms such as going non verbal and the extreme anxiety your daughter is experiencing are related to the epilepsy though. My child has both ASD and epilepsy I wonder from your posts if your daughter is the same.

@JimmyGrimbleI am so sorry that your son has been sectioned for 2 years. I can’t even imagine how difficult and stressful that is for you. My daughter was sectioned for 7 months and that was hard enough! That is similar to my daughter, not taking part in any interests or activities apart from her phone, stays laid on her bed all day apart from when I take her to the toilet. That’s how I feel too, like the team have sort of given up on her and definitely like you’re banging your head against a brick wall. How come they refused to screen your son for autism? That’s terrible. I am definitely going to push for a neurology referral because something isn’t right. I reported these laughing episodes 6 months ago and there has been no tests or investigation whatsoever.

@vadypopsThats a good idea regards an advocate. I will look more into that, thank you. I am so glad that you managed to get access to life changing treatments.

@ThePureSo now I have the dilemma of whether to stay under the teams she is currently under and just fight harder or whether to change GP surgeries and transfer her whole care over. I also worry if there is a huge waiting list for the other services and then she ends up not having any care in the interim. I considered the option of a second opinion from a different consultant but I’ve been told this one she is under is the only one specialising under LD. I could ask more questions though.

Do you think making a complaint would make things worse? As in strained professional relations etc?

@Aintnomountainlowenough I agree with you about the other symptoms, they present more as anxiety and possible ASD. The laughter isn’t right though. I also read that emotional trauma can increase the likelihood of developing epilepsy which is interesting because she went through a huge emotional trauma and has never really recovered from it.

The GP postcode is what determines service eligibility in my LD service, yes. It leads to some frustratingly crappy issues when you live on county borders (which have hit my own family as well as clients) but it's down to flipping funding like everything is.