Complaining to MH trust

[NolongerAnxiousCarer]

I've written a complaint to the MH trust that dealt with DH last summer when he became acutely unwell with psychosis on holiday in another area of the UK. I'm planning to email it to PALs, but thought I'd ask if anyones got any advice before I do.

The main jist of the complaint is that I didn't feel listened to or included in the assessment process. There was a police detention, the police and I both felt he was very unwell. The assessment said no signs of psychosis and discharged him. I had to deal with what to me was a clearly psychotic husband resulting in me developing PTSD. When we got home his own CPN agreed with me he was very poorly and got his medication sorted straight away.

So my main complaint is that I didn't feel listened to or included in the process resulting in trauma to me. I've discussed it with a CPN from DHs team who agrees that if the situation had been handled differently it would have been far less traumatic for me.

The purpose of the complaint is to improve they way that carers are treated as part of the emergency psychiatric assessment and the support offered. Part of me would like them to admit they got it wrong. I'm not saying that he necessarily should have been sectioned, more that we as a couple should have been offered support, possibly medication to help calm the situation down. It seems very much like the approach was section or discharge with no inbetween. When DH is feeling threatened eg police detention and being told he may be sectioned (which the assessor told me was the approach they took to try to stress him and bring out symptoms ) it is more likely he will display fight or flight responses than disclose the delusional beliefs that are causing them hence me being told. He was not psychotic he just had a "nasty temper".

Anyway I'm waffling on now. Any advice regarding the complaint process would be valued.

Hi anxious, was it a section 136?
Was it made more difficult by the fact you were out of area so couldn't get crisis team/ care coordinator access etc?
I' m not sure about the rule about family presence in the 136, I know they have to assess on the ' there and then' presentation and it's only about a section or no section. I think sometimes, depending on who the second doctor is, they could liaise with crisis teams etc but sometimes the two doctors doing the assessment are not working in the area, have just come in for the section. They rely on the social worker to do documentation largely, the approved Dr just completes some paperwork. In an ideal workd if the person was discharged , there would be some crisis team follow up daily and a contact number to call for immediate assessment. But I can see how out of area and based on the police section alone, this may not happen.

I think if he then went onto be more overtly psychotic and needed medication or admission, I would draw their attention to that, and say that he had been psychotic prior to the assessment ( presuming he had) and that you understand he may not have been section able at that moment in time but that you were left with no plan and no support which was very unhelpful.

Thanks wooley,

Yes it was a 136. He had a history of psychosis prior to this and was (still is) under an early intervention in psychosis team in our area. He wwas displaying psychotic behaviour when the police detained him they tried for direct admission to psych ward but were told to take him to A&E. He was too agitated and agressive to mannage there so was taken to the cells. He was then asessed lated that morning (a Friday) by the MH team (2docs and sw) I'm sure it was complicated by being out of area. Unfortunately neither his CPN or another CPN who works with me were working that day, I spoke to a duty worker from his own MH team and passed these details along with his full history to the team who were assessing him, pror to them seeing him. I wasnt able to see or speak to DH between him being detained and released after assessment. He was still not at all himself, though not as overtly psychotic as before detention. The psychosis became more obvious over the next few days as he felt safer. He is very good at keeping the psychotic thoughts on the inside and seems aware of which beliefs are socially acceptable and which are not. So I can understand why they would say they couldn't see psychosis. But I know him better and I could and so could his own CPN when we got home. I know the social worker must have had some doubts as he rang me twice that evening but DH took the phone off me and wouldn't let me speak to him more than to tell him I still thought DH was ill.

It may be that they did everything by the book, but I do feel that I was badly let down by the process. I've given pretty graphic descriptions of events before and after they assessed him, but its difficult to give detailed examples of the after partly bacause I have some memory loss from that portion due to the PTSD and partly bacause the main issue was that he was aggitated and irratic rather than being able to give a direct example of a psychotic delusion from that time period. A few days I have clear examples, shouting responses to people who hadn't spoken, being convinced the Queen was trying to exile him, etc. My main concern is that he was clearly unwell to me and they didn't listen which left me feeling unsafe.

The CPN from DHs team who I've spoken to about it said he thinks it would have been handled very differently if we had been in our local area.

Part of the problem was that DHs psychiatrist had stopped his antipsychotics 2 months prior to this a simple restart of meds made a huge difference. I've included that too.

I'm sorry this happened and it frustrates me that 136's often end up in police cells which is sad and aggravating to the patient and police who are,not mental health specialists. I'm not sure as to the process of including relatives or carers in these situations but I can see how frustrating it must have been for you. I think in these situations blame is a coping mechanism, and it sounds perhaps like this was one of those instances where alot of unfortunate factors came into play to make an upsetting situation but that ultimately everyone did their best to assess your husband and keep him safe. I think that writing and encouraging them to include carers is a really positive thing to do and hopefully it will help you in your own recovery. Just be careful not to put everything onto the mental health trust and try and seperate what could and couldnt have been helped as this may hinder you moving forward. Best of luck x

I think if someone is not section able at that particular time, that is probably correct on the evidence seen, but that is just a snapshot, and that's why crisis team input afterwards is so vital.
And it's so traumatising to have to ' care for' a loved one , even if we can do it for others in work etc. I know I have been there once with physical health and once with mental Health with family members. It's awful . I really feel for you.
That was really unfortunate Anxious, you should have had crisis team support in the holiday area you were in in my opinion. If you want to PM me feel free xx

Would he have agreed to informal admission, anxious, because one reason for that would be carer unable to manage behaviour etc, even without section.
It sounds as if he was very chaotic and unwell.

Well you can try but I've never had any success with PALS re mental health stuff just clinical. ive also not ever been able to get any support as a carer and certainly not by the crisis team.

I'm not really sure what you really want to gain from complaining. If you just want to be heard then carry on. He was assessed and kept safe. We as carers don't really get a say.

If anything it's the person who stopped his medication who should be held accountable.

I don't have anything helpful to add but I just want to say that I can't believe you are going through all this Nolonger but still find the time to support and be kind to others who are struggling. You really are so very kind hearted wanting to help others when you've got so much going on in your own life. xx

Thanks for the input everyone. I do understand that its was a difficult situation for the assessing team as he wasn't known to their services and we were only in the area for a short time. I also know that it was never going to be a great experience. I'm sure all the individuals did their best within the system they have inplace. They kept DH safe, they assessed him. My issue is that they didn't keep me safe and I came to harm, which approaching a year later is still affecting me to the extent that I can't do my job properly.

It does sound as if he should have been detained if not then, then shortly afterwards. What a nightmare for you anxious. Psychosis is so difficult because you cannot reason with the person and they have no insight. Its a very unpredictable situation. Hope you are ok.

He didn't physically harm me, but he seriously scared me to the point of developing PTSD. He wouldn't let me speak to the MH service when they tried to ring and check on things, and I was too scared to try to get help incase that by doing so I tipped him over the edge. I just wish they had let me spend time with him in a supervised setting first so I could have decided if I felt safe to be on my own with him. In the end I managed to calm him down and things were ok but I wish I could have had those conversations somewhere I felt safe. I did ask for this at the time but was told it wasn't possible. The MH team said once the assessment was done they weren't involved any longer and the police could supervise us meeting. The police said that he'd been assessed by the MH team as being no risk so there wasn't any need and made me wait for him in the carpark on my own. I wasn't even allowed to go into the police station to meet him.

I will be ok but my PTSD has triggered badly over the weekend, so I'm feeling very delecate right now and frustrated that I can't seem to move on from this incident.

In what way didn't they keep you safe though, did your husband physically hurt you?

I can easily see how this has happened. In short, if you had said you were not willing to take him home, it would be interesting to know if he would have been reassessed in a different way, to see what was going on, take your views into account and see if you were happy to be taking him back.

Xpost.

Ah I see. Thing is we as carers are more or less on our own. There isn't the resource there to take us into account when dealing with a crisis. They only have the capacity for the patient. Soon it probably won't even be that.

We need to care for our own mental health, develop the tools to cope when being the carer in a crisis and make sure the support is there for us. I do feel for you a lot though by all means complain and it would be lovely for some provision was made for carers and their needs.. to be protected somewhat from the awful experience a crisis gives. Just don't hang all of your hopes on the mental health service for that as it's likely you'll be disappointed. Good luck.

If you're re not willing to take them home they will be sectioned and detained.

I initially told them I wasn't willing to collect him, I felt pushed into it as the impression I got was if I didn't he'd just be released anyway and I knew he did not have any money, phone or anything with him. I was scared for him to be on his own in a strange place in that state too so agreed on the understanding that I could meet him in the police station to assess if I felt safe with him. When I got there I wasnt allowed in as there was no public access allowed.

DHs own MH team offer a huge ammount of carer support as reccommend in the NICE guidelines for psychosis and schizophrenia. I also know that studdies have shown this is cost effective as supporting carers reduces hospital admissions significantly. The PTSD has meant that I've not been able to offer him the support I normally would so his team have had to put a lot more resources into supporting us.

Thinking about it I think I found our crisis team a bit hit and miss carer wise, depending on who I spoke to. Luckily we've not had their involvement for a number of years as DHs team offer fab support to both of us. The emphisis beingvon avoiding crises rather then coping with them.

You need nerves of steel when going head to head with them. If they can release them into your care they will try every trick in the book to make you.

But they won't just release them onto the street as responsibility is still on them in that case. They need you to take responsibility so it doesn't come back on them. It's really hard to do but sometimes enough is enough.

If I'd realised that was the case I would have refused. I felt backed into a corner. The first time he was really ill with psychosis I wasn't on hand to support, he was admitted for a few days then sent home with crisis team and disappeared! So I fully expected them to discharge him and the same or worse happen.

It took me a good while to find out and then it was someone else who told me. Once you have that information you just wait to play the game the next time it happens.

They can't just release them onto the street. If they did that and the patient died or someone else died at the hands of the patient, what would happen... who would be responsible?

Practise the words 'I can not take responsibility for him' you discharge him on your own heads'. Get their names if you have to. The first time I started doing that before I had to push things further we weren't abandoned and left to get on with it. I found the police far more helpful than the crisis team a fair amount of the time anyway.

Above all you MUST become massively protective over your own mental health even before his. They walk all over you otherwise because the resource just isn't there.

Thank you, I am generally good at prioritising my own mental health even when he is very unwell. I've always found the police more helpful than the crisis team, most of what I have learnt about navigating emergency MH services I have learnt from the police. I've tweaked my complaint letter a bit and I think its ready to send. I'm not expecting mirricles, I would like an aknowledgement that they could have done better. But even if that acknowledgement is only to themselves and not me thats something. The CPN I've discussed it with said if he'd been the proffesional involved he would have been thinking blue lights when he was unable to contact me by phone.