A Recipe For Good Care

As a service user you become expert in a variety of skills – some useful in very specific scenarios (quickest time to commandeer a real plastic mug after admission to a psychiatric ward) and some more useful in every day life (which combination of buttons to press on the council’s benefits telephone system so you actually get to speak to a real person every time). But you also become an expert in what constitutes good and bad care.

I can spot good care. I can spot bad care. I can spot bad care where the people are trying their best to get it right but just got it a bit wrong. I can spot where people are trying to give good care but the system is getting in the way. I can spot when I’m being cajoled into thinking I’m receiving good care to cover up the reality of bad care. And a majority of other service users I know will also be able to give you this information about any service/professional/appointment they have encountered. We may come with messy coatings but inside our interiors are sharp and on the ball. If you honestly want to know how your service is working – listen to your service users. We know our stuff.

I think there is a bit of a presumption that all we do is rant about bad care/are never satisfied/always want more etc. etc. But I can 100% confirm to you that when I receive good care – I literally want to shout it from the rooftops and tell my grandma’s ex-neighbour’s niece’s dog about it. And invariably, the things that make me feel I am receiving good care do not involve a degree in rocket science – but just a simple understanding of humans, a non-judgemental approach and often a bit of banter on the side.

I want to tell you about a recent very positive experience of care I received. Because it was outstanding. Nothing ground-breaking was needed to provide this care. The people providing it were just human, communicated well with each other and with myself, and respected me as a person and my knowledge of myself. None of these people were specially trained in mental health. This experience was in a general hospital – in a ward that doesn’t get many mental health patients through its doors. Which just goes to show its not books, letters after your name or years in study that facilitates people to give good mental health care – it is simple compassion and open-mindedness.

The ward in question is a ward that has dealt with me a fair amount over the last two years or so. I end up there because of something connected to my mental health. Specifically something that is triggered by past (and sometimes current) trauma, so I’m invariably not the happiest bunny when I’m there. My mental health is complex, especially in certain environments and I acknowledge I can be a challenging patient to have on a ward. This ward was no different in experiencing the challenges of Ellie, but they were very different with their response to it. Since my first visit there, this ward has become the only ward in that hospital to send staff on our mental health training for teaching hospitals staff. They weren’t obliged to do this, but they did. And that’s important.

My recent experience on this ward came 9 months since my previous visit – something that upon arrival, the staff immediately congratulated me on and commented at the obvious (positive) difference in my mental state since last time. This not only made me feel less like I’d failed and let everyone down, but made me realise that although I had slipped up, I still was making progress.

I waited for the doctor to arrive and when she came she had come prepared with my folder, which had notes and recommendations from my previous visits and what had happened and what helped. She had also spoken to other staff about this and exclaimed that she remembered me before and it was nice to have a proper conversation with me. I was sat on the floor in a bay by myself, the floor feels safest for me, particularly if my back is up against a wall. She came and sat down next to me. Note, not in front of me – blocking my exit – but next to me, indicating that she was willing to go on this journey beside me. We sat and talked for a while before attempting the procedure I needed. She spoke about how I presented last time, asked me what helped? Did I want anyone there with me? How would she know when I was too distressed? How did we want to proceed with this? Was the best place to do it in the treatment room or would it feel safer where we were? We decided that it would be easier on the floor, I played my grounding playlist which she commented on and sang along to, and I was allowed to get my pink toy bunny out. In the meantime a nursing associate who had built up a good rapport with me in the past came and as a three we discussed how this might pan out and how things were at the moment.

I tend to get very distressed when this particular procedure is undertaken. And one of the first things is I will become mute and unable to communicate verbally. This didn’t phase any of the staff and they carried on talking to me like I was a human being. We did struggle with me tolerating the procedure. But I was assured that even if we did little bits with a 5 minute gap in between each try, if that was how I preferred to get it done then they could stay as long as it needed. She didn’t push me too far into distress each time and recognised when enough was enough. Eventually it was apparent that we would need to get it done under general anaesthesia – which is not ideal but was necessary in this situation.

The anaesthetist came up to join us, and again – wasn’t bothered by my inability to speak but addressed me directly and waited as I responded by typing on my phone. The staff bantered gently around me, picking up on things they knew I found interesting/funny – such as falling at roller skating or working in the NHS as we discussed the best course of action. Because of a combination of my complicated home situation, not particularly being very calm at night in hospital and a need to get the procedure done sooner rather than later – we came up with a plan that would involve me going home that night and coming back in the day for surgery tomorrow. The nursing associate advocated for some of my needs that she was aware about. I taken through the operating room procedure and differences due to COVID. Again, I was asked what would help – including that I would be the one to hold the mask to my face to put me to sleep. I was taken home and had a night in my own bed to prepare.

The next day I was kept up to date with what was happening with the surgery list – the staff made sure that even if they didn’t know what was happening, they came to let me know that – instead of leaving me to worry and wonder.

When I was taken down to theatre, the staff understood my difficulty wearing a face mask and allowed me to use my pink bunny toy to shield my face (he also smells of parma violets and this helps me stay grounded). They bantered about the colour of my hair, the name of my toy (pink bunny), and debated the colour of the toy (the anaesthetist thought he was purple which was slightly disconcerting). The anaesthetist was different to the one the day before but he, and the other staff were aware of what my specific issues were and how to help them. One of the nurses explained that she wouldn’t be allowed to stay in the room during the intubation process because of COVID restrictions but she would take care of pink bunny. Normally I would lose my speech before even going down to theatre but this time I managed to stay speaking up until getting onto the operating table – which says a hell of a lot about the efforts of the staff to keep me calm.

When I came round, I experienced my usual distress of not realising where I was. But even this was less than before. One, the nurses reintroduced themselves from before, told me I was safe and where I was. Two, they were waiting with extra blankets which calms me down. Three, they recognised that getting me back up to the more familiar ward environment sooner rather than later was important and lastly, but by no means least – when I came round, pink bunny was in my arms – and on his leg he had his very own hospital name band. In a weird way, the fact that someone cared for my soft toy was even more important than them caring for me!

It just goes to show, that its the simple things that really help. No-one wants to be in hospital – and i can definitely think of plenty of other ways I’d prefer to spend two days of my life, but it was considerably less difficult and traumatic than it could have been and I left feeling like a valuable human being, who hadn’t messed up big time, but who was on a journey with ups and downs and by sharing that journey with others was able to help them learn for the next person.

So if you find yourself wondering how on earth you can provide good care. Just think back to the basics.

So to conclude, a recipe for good care:

  • Set your mode to “human”
  • Line with common sense.
  • Two cups of good communication.
  • A pinch of openness.
  • A generous glug of compassion.
  • Careful siphon off any excess judgements
  • Mix together with knowledge of your service user as a person.
  • Serve with a side of banter if required

Tongue-tied – what it is like to experience mutism

I received a lot of positive feedback on my first blog post – thanks to all those that read it and people that have given me feedback. I hope it continues to be something interesting and informative.

I have a couple of ideas of topics to cover in my next few posts and the order is probably going to be quite arbitrary and more to do with if I feel up to being able to write about a particular subject at a time. But the topic I’m going to be writing about here is one that is almost the polar opposite to the subject of my first post – and that is NOT talking.

People who know me well (or even those that don’t know me well at all) know I’m a bit of a conversationalist. I’m easily bored and not a huge fan of my own time and having stimulating conversations and debates with others is really important to me. It’s also kind of necessary to do a lot of talking in my job – especially the teaching and training parts. But what people don’t always know when they first meet me (or indeed if they met me many years ago) is that at times I am entirely unable to speak. It’s not something that I tend to open first encounters with – my mutism usually catches people off guard the first time they experience it.

This is not that I don’t want to speak, that I’m shy or have not got anything to say (I ALWAYS have something to say) or that I am being rude – it is that I am physically unable to undertake the process of speaking. For me it is a physical sensation – literally as if my tongue has been glued to the roof of my mouth. I can be doing something totally alone and not happening to be speaking to anyone and I will suddenly realise that I no longer have the power of speech. 9 times out of 10 it will have been preceded by some sort of factor that creates a lot of anxiety for me – usually but not exclusively to do with PTSD – but it can also occur when I’m overly anxious or overwhelmed generally. Sometimes I can’t quite pinpoint the reason for it but I do know that the more anxiety-provoking situations I am in in a day the higher the likelihood of me losing my voice for a significant amount of time.

I am not CHOOSING not to speak – it’s really important people know that. It’s that I CAN’T speak. But I would really like to…it makes my life easier!

Looking back I think I’ve actually had some sort of mutism forming for years – but was something that used to only occur during periods of dissociation (which I didn’t realise until a couple of years ago was what I was experiencing (and indeed claimed I didn’t dissociate for quite a number of years but it’s kind of hard to avoid now as it does affect me on a daily basis)) but has grown in the past couple of years to something that can sometimes last up to a couple of days. The more complicated and traumatic situations I find myself in and the less empowered I feel over my life the more the mutism grows. I don’t know much about mutism in adults – it’s not all that common compared to in children but it is often linked to trauma unless there is a root in some sort of Autistic spectrum disorder. I suspect it may stem back to my general need to be in control – but it doesn’t really make sense because being mute really does mean you have a lot less control on the things around you!

When I lose my speech I feel embarrassed. I feel frustrated. I feel like people must be judging me and thinking I’m rude or disinterested. I am trapped usually with a lot of stuff I need to talk about but no way of getting it out. Yes, most of the time (though not always) I can type or write – but conversations this way are difficult and often taken wrongly not to mention how long they take! I put a lot of pressure on myself to “just man up and speak” but this only makes the situation worse. Sometimes I can be very distressed and mute and may be struggling cognitively to even process what is going on around me. Or sometimes I can go about my day perfectly normally but silently – when I’m like this I can hold conversations, I can joke and laugh and do team activities, I can travel about…but all in absolute silence. Friends have observed how bizarre it is when I find something funny and collapse into silent giggles but equally how weird it is to see someone crying hysterically but totally silently. (Though on certain levels of PTSD-trigger occasions I do make a noise but it’s more like a roar than any noise a human would normally make).

Not speaking gets in the way of a hell of a lot of life things. I often can’t call for help when I’m distress. I quite regularly have to cancel meetings etc. because there is no point me going. Yes, I can be on the edge of social situations though it’s difficult to really get involved without speaking – a lot of my good friends are very good with trying to include me or being patient waiting for me to type a note on my phone to be read out to the group. It makes it really complicated to get out of stressful situations without being able to properly explain. I also find that depending on the situation, people can treat me very differently to how they would treat me if they met me speaking. I regularly have people thinking I’m deaf and going to Oscar-winning lengths to perform whatever it is that they’re trying to communicate with me – which has given me an insight into how it must be like for someone who is actually deaf. People often treat me like a child – talking in a very patronising way to me (to be fair I do look about 16 on a good day and if you add crying and optional roller skates into the picture that brings it right down to at least 12!) The best scenario is when someone treats me just the same as they would if I was talking – just with a little more patience and time to accommodate for the conversation.

My speech can sometimes be gone for a couple of minutes or sometimes it can be gone for a couple of days. Or sometimes it struggles to return fully throughout a day. When I do start getting my speech back often my first words are more like indistinct noises and I can struggle to speak clearly for quite a while. Thinking and forming words is a really brain-heavy process and it takes some effort I can assure you! I can also sometimes experience my voice starting to disappear- I will still be able to speak and people who don’t know me well probably wouldn’t notice the slight drop in fluency and eloquence but people who know me well will often pick up that I’m not at full capacity.

So if you come across me and I don’t acknowledge you. Or I don’t seem my usual self and don’t contribute to conversation or cancel a meeting or a talk or something – don’t take it personally, it’s not me being lazy, unreliable or unfriendly – my voice might have just gone walkabouts and I’m working my hardest to get it to come back! Treat me like you normally would and just give a little more time.