by Michael H Stone, Retired Non Clinical Private Individual

I am not a very ‘social’ person: I wasn’t social before the events that led to my involvement in the debate about end-of-life care and behavior, and I am even less social since the events that changed my life– events that included 999 staff and my dead mother, events that I found unacceptable, events that  struck me, amongst other things, as ‘at least in part a training issue’. As a ‘lay NHS campaigner’, my own method for trying to prod the NHS into changing for the better, is probably a relatively unusual one. The happenstance of how my campaigning developed, meant that for several years my discussions were almost exclusively with doctors, nurses, and a contact at the UK’s Department of Health: when I realised that I had to publish online, my preferred platforms included BMJ rapid responses in an attempt to reach a medical readership, and Dignity in Care which has a more diverse readership, although I also published in other places.

Clinicians share professional objectives, and they also get their heads together: doctors and nurses discuss issues and network at professional conferences, seminars or at local meetings. Bereaved family-carers do not have conferences: we are not a professional group. Long-term illnesses, do seem to have associated support groups, but I think that isn’t really the case for bereaved relatives who believe something was wrong with the professionals’ behaviour: there might be support groups based around grief but less so, I suspect, around the issues I am bothered by.

Since I joined Twitter a couple of years ago, I have had discussions with other lay NHS campaigners, and social media facilitate the sort of networking and discussion which takes place at those professional conferences. This piece stemmed from some tweets I made, after I had compared a piece about social media written by a doctor, with a piece I had written myself. Social media reveals to us bereaved relatives who have concerns, that we are not alone: it reveals that our own experience, which we might have felt was ‘unique or at least unusual’, was also the experience of others. The list of similar experiences shared by many lay campaigners who had a bad experience, seems to include: PTSD and depression; being regarded as ‘uninformed and ignorant’ as a matter of routine by many healthcare professionals, along with the somewhat paradoxical ‘as soon as they realise we seem to know more about it than they do, they refuse to discuss it with us’; and that we learn from each other.

This networking leads to ‘upset bereaved relatives’ who are better-informed, and can more effectively point out or complain about NHS behaviour they see as questionable or wrong. Some of those complaints are justified, some are not, and many arise from poor communication and confusion. Some of those distressed bereaved relatives are apparently beyond reasoning with, some are open to explanation and persuasion, and others have moved on to using social media to spread information useful to the lay public and, dare I say it, healthcare professionals too. So, if the NHS falls behind the curve for social media, these better-informed upset bereaved relatives will surely become increasingly problematic for the NHS. When I read papers written about the uses of social media by clinicians, I was struck by discussion of the ‘ethical issues’ involved in its use, and the need to satisfy ethics committees: whereas we layfolk ‘just ask our questions’. I am not sure exactly how – and it is for clinicians to decide how, anyway – but, to cool down the often ‘boiling waters’ of social media, I believe that clinicians will need to figure out how to use social media as nimbly as we laymen use it, without clinical ‘regulatory frameworks’ that may prevent or discourage them from diving into these social media seas.