In October Helen shared her mental health inpatient experience, as it happened from the ward, and on the most public of platforms – Twitter. I followed her Twitter feed, was intrigued by this stream of instant feedback, and wondered if it might be perceived as a gift or a threat to an NHS Trust.

I was lucky enough to have a chat with Helen about her experiences, and this post summarises our conversation:

Difficult status coming up…

Firstly I wondered what led to Helen choosing to make such a personal experience, which many of us would choose to keep private, so very public:

Helen told me, as a regular use of Twitter it simply seemed ‘quite natural that I would carry on using Twitter’ and that she had actually made retaining her phone a condition of her admission. However, this quickly came under threat when staff attempted to confiscate it. I have previously blogged about inpatient access to smart phones and the law here. It is worth reflecting at this point how smart phones have become an essential day-to-day communication tool for many people – for Helen a text, Facebook update or tweet was infinitely preferable to a conversation on the ward payphone and an invaluable way of keeping in touch with people during a distressing period.

‘It validated me much more than my experiences on the ward’

Helen told me that initially she began tweeting her experiences out of both ‘boredom and frustration’ and to elicit the support she felt she needed and was not receiving in person from ward staff. It is telling that Helen felt she received more support from her Twitter community than in person from the ward staff whose role it was to offer just that.

Helen explained to me what this support felt like at the time: ‘it was quite a surreal experience … all these people who we’d never met, reaching out and supporting us – people who’d used services before, people who were carers, people who were professionals and people who never had anything to do with mental health ever, but just were for some reason touched by what I was tweeting and were interested … and there were people who tweeted just to say ‘I’ve been reading all your tweets’ and I just want to say thank you for what you’re doing’ … and there was the chief editor of the Lancet, sent me several tweets -they were so kind, that’s what really stands out to me, they weren’t corporate tweets, they were personal and really kind tweets’.

‘I was sat in a beige room, on my own, thinking can I do something positive here?’

Helen shared with me how she hoped to challenge mental health stigma by sharing her experiences of acute mental distress. She was particularly struck by her own sense of ‘being the least dangerous person in the world’ contrasted with the (inaccurate) Sun headline which was such a stark contrast to her situation:

Helen certainly reached a lot of people, as illustrated by the 800 new followers she gained on Twitter during the week, the retweets, and the kind responses she received: ‘do you know I never got a single negative response, not once and I had so many responses, I reckon it was in the hundreds so I don’t know exactly what I achieved, but I must have done something positive’.

‘They knew I was an RMN and yet they left me in my room for a whole day and didn’t speak to me’

Helen had a poor experience during her inpatient stay; she described how shocked she was that even the fact that she was a nurse herself appeared to make no difference to staff attitudes: ‘the day when I was on my own for the whole day, probably my worst day and I was utterly tormented by voices and thoughts, my husband phoned up in the evening to find out how I’d been that day, and the nursing staff told him that I’d had a settled day.’ Helen took to Twitter to share her outrage at the nursing staff claims:

Humour as a subversive tactic

Use of humour can be a subtle means of subversion when we feel there is no other avenue to challenge authority.  Helen’s Twitter exchange with @Sectioned_ is an example of the positive role humour can sometimes play in even the most distressing of circumstances:

‘What I tweeted about was massively boundaried’

I wondered if Helen had any regrets about tweeting whilst experiencing psychosis, and what boundaries she put in place to keep herself safe. Helen told me: ‘Even though I was unwell I was discerning … I didn’t put it in such a personal way if that makes sense .. I didn’t give so much detail and I didn’t put the content [of my thoughts] because that felt too personal.’ She also chose how she shared her experiences in a way which other people could relate to: ‘I didn’t go on rants, although I was critical, because I don’t think they’re helpful … I pride myself on being constructive … I think people stop hearing or they get irritated or they start personalising it – so if it is a person accessing services and it’s a professional reading it they might think ‘you’re blaming me for that’ … and the ‘them and us’ starts coming in to play, as someone who uses mental health services and works in them as a nurse I want to avoid that’.

Helen told me her partner was worried about the possibility of her being ‘trolled’ with negative comments and she explained that she had planned to simply ignore them if that had happened. In the event it didn’t and Helen had a very positive experience of Twitter conversations.

I’m going to storify my tweets and send it to the ward and the chief executive

Helen described how her tweets became an instantaneous online journal of her experiences on the ward. They are in effect real time evidence that she plans to storify and then share with the NHS Trust with the intention of giving them feedback and recommending how they can improve their practice:

‘I want to motivate, and hopefully give them a way of making positive change, as opposed to just being critical – which wouldn’t be that helpful. And also I’m going to offer to come up and maybe speak to the staff face to face, – what it was like my experience of being nursed on their ward’.

‘I think they [NHS Trusts] are scared to death of social media’

I asked Helen to share her thoughts about how NHS Trusts are engaging with social media. Her views were damning of most corporate accounts – both in terms of engagement: ‘you can send a tweet to a Trust Twitter account and you don’t get a response until a week later, which in Twitter time might as well be at least ten years’ and in terms of content: ‘most Trust’s Twitter accounts are basically saying ‘look how good we’ are or ‘here’s the date of my next flu clinic’.

Her experience indicates that even NHS Trusts who are well established on Twitter have a lot to learn from experiences such as this.

‘With Twitter I’ve found so many allies’

I enjoyed Helen’s reflections about the ups and downs of activism, the frustrations she experiences and the way in which her Twitter community sustains her:

‘I very much think of the long game now, four years ago I wanted everything to change tomorrow, but now I look at it as if you can even change one or two people a little bit then that’s better than nothing. I love the word radical because I’m a radical, but you have to pace yourself or you get really frustrated and you get angry and you end up pissing people off, and I’ve ended up winding people up, and then you get alienated, so I have learnt not to and to try and take people with me as opposed to burning bridges and leave them behind’.

‘With Twitter I’ve found so many allies, who have given me hope when I feel there isn’t any, that makes you feel you’re never alone, and you’re all fighting the fight to make things happen and to shift things, … we’re all on a similar journey, different streams, but the flow of the river is the same, if I’ve had a crap day at work and to go on Twitter at the end of the day and see that is brilliant, and it boosts me’.

And leaving the ward…

You can find Helen on Twitter @teaandtalking. She is a mental health nurse in Dorset and you can find out about her Tea and Talk mental health awareness raising workshops here. I’d like to say an enormous thank you to Helen for sharing her experiences with me, her inspirational approach to mental health care and to reducing stigma and discrimination.

Postscript (posted 29 May 2014)

Helen copied me in to some recent tweets with the NHS Trust responsible for her inpatient stay. She tweeted the corporate account this blog post and got a prompt response (on Twitter) from the Director of Nursing. They are going to meet to discuss Helen’s experiences whilst she was an inpatient on the ward.  Hope it all goes well!