I’ve been attending to this post since the end of December ’17, and as such have a lot to reflect upon. These are things I’ve decided to put in the box labelled ‘Things to notice, take attention of and think about‘. These are a collection of ‘magic phrases’ to carry into 2018. Reflections of yesterdays to be seeded as tomorrow’s intentions. There are quite a few, and indeed as a gardener knows, some may need trimming, putting elsewhere or left to its own devices.
Pretotyping – finding the right ‘it’
A term (find out what it is) brought to Creeknet, and to the Mazi project with my work with unMonastery in Greece(1, 2, 3, 4 visits!). A few years ago a good friend and colleague introduced the term to YT, and it most surely stuck. This year my understanding this way of working had a boost, reworking an invisible set of services digital services delivered by a MAZIzone, making the services visible on the walls of a classroom with big labels and pieces of paper stuck underneath. Katalin Hausel initiated the practice, which involved paper, pens, coloured paper and stationary. We made a local scrapbook, website too (later placing it here). ‘Pre-tech’ is the term she developed from what a pretotype could be when trying to collect local knowledge, something I really chime with. Appropriate activities for age and language – having a couple of translators on hand readily. These were a reasonable set of outcomes given the dynamics and problems of working in an interdisciplinary and intergenerational group. A group of people with different skill sets, experience, and their apparent commitment to a project … it was hard work sometimes. The diary we created on the MAZI zone in the Kokkinopilos schoolhouse can be read here.
Promoting and enhancing the best use of digital technology for Carers and Care workers – not starting with ‘there’s an app for that’. All things digital begin with ownership to make the best of the technology, and carers have a greater need to enable ownership, best use and potential for making it work for their charges and themselves. The soulchip approach (from the soulchip services page) presently:
Modern care work is becoming digitally enhanced to enable people to have independent lives. As such care workers need to have skills and literacy to use technology, engage with its use creatively as a toolbox, adding value and be able to resolve issues that arise – sometimes it really is just turning things off and on again. Unpaid carers, especially older people, are being pushed into situations where a mobile phone and online form filling is becoming the norm unfortunately. Training carers should not be a classroom exercise, but treated as a conversation with problems aired, shared and discussed. Outcomes would be actionable and understandable to enable people to care for their charges, and greater confidence. Writing and drawing is encouraged before even touching a screen or keyboard.
the idea will be developed further this year, hopefully with others, as this sector of digital inclusion holds plenty of interest for YT professionally and personally. Awaiting a response from Carer’s Lewisham at the time of writing, about a series of training sessions for 10-12 carers, ages unknown.
This is an idea borrowed from the amazing Christina Burnett of Vauxhall CIC. The idea is a room set up with assistance stalls, . I’m presently attempting to initiate an event in Deptford to get people talking about their difficulties with devices, with a very tight focus in the first instance; a Tablet Talk, sitting down to talk about iPads loaned out by Deptford Library, and general issues about using digital tablets. If suitable volunteers are available the options for discussion would also cover laptops and phones too.Tentative interest from Julian at Aidis, would facilitate other conversations about accessibility, the topic that leads to everything else.
Meet up Events
Left lying fallow for a number of weeks (okay..months), 2017’s Caring Digital meetups in the Talbot pub started out well with a number of interested parties, some great conversations about individual practices and how to develop the group – an Unconference was touted at one point, but this is a large undertaking and needs lots of planning. Hard to fit in when trying to generate work. 2018 is a second chance for the meetup to continue,
Toxic Treasure and Nocebos
This has been the second year of working with Lewisham CCG in their Patient Reference Group (PRG), getting to grips with the general anxiety that the organisation has about public engagement. I had attended my third consecutive AGM asking each year a question about hospital food, this year related to the actual spend on food in Lewisham hospital, in my belief that good food in hospital is part of the healing process and the education of people. It seems that the CCG just hand money over to the hospital trust with no break down, as my question caused some consternation – Lewisham Hospital Trust needed to give me an answer which has not arrived at the time of writing.
Toxic treasure – really?
An interesting term YT heard on radio 4 whilst in an isolation ward, about NHS complaints procedures and how one New Zealand head nurse made sure that complaints and problems were the ‘treasure’. It makes a lot of sense to collate anything which is not just a corporate backslap, how can a service improve if the things that went wrong are just inconveniences? YT brought the term to the group along with a passion for accessible materials for patients.
Nocebos? Definitely real.
Trying for some time to educate every healthcare worker YT has engaged with about how the expectation and language of a situation can have an affect. Whilst having many problems with my leg after a traffic accident, found that visiting a GP or hospital department that would only offer me more amoxocillin would make me depressed and unhappy, with after effects lasting a few days with heightened sensitivity. On the other hand, one doctor wanted to address the depression that the situation provoked as a whole – which then gave me a lift, an actual sense of value in life. It could have been a placebo effect, which is known but not understood. Thinking about the converse, ‘What conversation would make me feel worse about my health?’ led to find what is called a nocebo.
One instance heartily recalled about trying to bring this language shift was in a meeting of pharmacists I was invited to as part of my volunteering (as a lay member) with Lewisham PRG; . The American professor hosting my talking table was taking notes from members of the group; he had earlier described a system diagram of healthcare, deeply complex and hiding the patient in the scheme of things. His proposition was to try and get different thinking as a ‘Community of Pharmacy Practitioners’, which YT thought was a worthwhile goal to bring the patient to the centre of the scheme. Feeling bold, YT put forward the statement often repeated: “I have to educate health care workers about the value of nocebos”. Not a word was written down by said professor. He moved on. I smiled and thought, no surprises there then. No matter where the patient is in the scheme of things, being told what to do is the health care attitude, and deal with it.