Re-connecting with HIV

Mon 9 – Sun 15 Oct 2017

One day at a time

National Conference for People with HIV 2017

One of the main things last week was attending this conference run by Positively UK. Really nice to be just a punter rather than someone presenting or organising. Though being at the conference still felt a bit like being at work as this is the exactly the type of things I fund and I have to try hard to stop seeing it from that angle.

Being a punter again

I was nervous about attending. This is good because it is how most people would feel. About 200 people, quite diverse. The main group was older white gay men but with about 25% of attendees women and the same number for BME people. It was a quite old-fashioned conference though perhaps I’ve been to too many ‘unconferences’ where the day is unplanned and evolves. Clearly it is important to have a format that people feel comfortable with.

The bad news

bloods takenA good opening session. The last year has mainly been one of political setbacks such as Trump and Brexit. There is clearly reduced funding for HIV prevention & services. This ongoing austerity is going to get worse with Brexit. And it is leading to dangerous things such as people wanting HIV tests being turned away by clinics because they have no free appointments!

The good news

But there have been some real gains including the legal action to force the NHS to supply prep and declining HIV diagnoses in London amongst MSM (men having sex with men). The latter looks like it is due to more people being tested, diagnosed, and put on treatments. And we now know the people on treatment can’t pass the virus on:

Undetectable = untransmissable

So with prep we should now be looking at declining infection rates but we need to make sure this happen for all groups including BME, straight people, and drug users. ‘Undetectable is the new negative’ is the message – you can have sex with undetectable people and you won’t get infected. The sad thing is that we probably knew U=U a long time ago.

Bakita

Woman with AIDSAlso a very good opening speech by Bakita, a young black woman. She stressed the need to consider woman, migrants & trans people. And fundamentally she pressed home the importance of not just using the medical model but also seeing HIV in terms of the social model. It’s not just about getting tested, going on medication, being undetectable and everything is wonderful. Life with HIV is far more complex. And even when things are good we need to remember those who are like us but whose lives are not good such as the struggle many still face  in the international world.

Ageing

I attended morning workshops on ageing. It’s strange getting old in that our lives can be better or worst than they were when we were young but we are trapped by our experiences and modes of thinking. I’m getting older but I’m going to have a great time. There will be problems but the future is wonderful and it’s going to be better than before.

Big problem in looking at ageing is simply the way it’s a cover-all phrase stuck to a massively diverse group of people.

Also clear there are issues that affect people with HIV of all ages as well as specifically older people with HIV. And there are even issues that simply affect all older people whether HIV or not i.e. meds and their inter-actions.

No easy answers

We are the first generation not killed off by AIDS. We also need to remember that some groups have specific medical and cultural issues to deal with as they get older such as women dealing with the menopause.

Contacts

A very nice hotel lunch and chats. Really good to catch up with people I know via social media. For me, social media friends are as real as face to face ones and probably more important in my life.

I bumped into my old friend Ewan who I know from Brighton. And I made the acquaintance of a lovely Nigerian lady who told me to contact her if I was ever going to Lagos so she could put me in touch with people to show me around and look after me.

Glad I stayed

There was a Portuguese film I fancied seeing at the ICA (The Ornithologist) so it was touch and go whether to leave the conference to see this. I decided to stay and glad that I did. The afternoon session on Innovation and Tech was interesting though very work-related. And then short presentations by different HIV initiatives followed by a nice glass of wine and conversation.

Tech for Good – TfG

Crowdfunding

woman using mobileApart from getting everything ready for our new UK TfG programme launching in Nov, I am also overseeing the 16 projects we are piloting a matched crowdfunding programme with. We have given them grants equal to 50% of the cost to run a specific new project and they have from 1st Oct – 30th Nov to raise an equal amount via crowdfunding.

Linked into this I attended an event on Thurs at NESTA to mark the release of new research report on a matched crowdfunding programme to fund heritage and arts projects. ‘Matching the crowd – Combining crowdfunding and institutional funding to get great ideas off the ground’ can be downloaded here  There is a also this blog ‘Using matched crowdfunding to tap into more than money’. And general case studies and top tips from projects are also available on NESTA’s website

#africatech

This is the hashtag I use to flag stuff on twitter (@billydann1) about tech issues in Africa particularly around TfG and ICT4D – Information and Communication Technology for Development. Africa has huge poverty issues whose scale pisses on most of the stuff we are dealing with. If we can use tech to tackle some of those issues then we will make a better world, and learning from what works in Africa can be transferred to other places.

geographical africaThurs afternoon, me and some colleagues met up with Bosun Tijani from CCHub in Lagos and Lukonga Lindunda from BongoHive in Lusaka. It was great to catch up with what both of these brilliant hubs is doing and specifically to hear about CCHub’s Diaspora Challenge. They are trying to harness the ideas of Nigerians abroad to develop projects in Nigeria. So not just getting people to send money. And trying to do support in an effective and organised manner. Might be hard for BongoHive to replicate simply in terms of the number of Nigerians abroad compared to the much smaller number of Zambians.

Speculative conversations and catch-ups

Some really great catch-ups last week though the ones with UsCreates and Good Tech Lab were postponed 🙁

Reason Digital

safetynets appCaught up with two people from Reason last week. Tues breakfast with Jo Wolfe who runs their London office (Reason’s main office is in Manchester). Jo used to be the Assistant Director of Digital for Breast Cancer Care.

Then on Thurs, I lunched with Matt Haworth (co-founder and director of Reason) at the ever wonderful Royal Festival Hall – the epitome of good public space. Reason are a great tech agency who really get what TfG is about and are constantly learning about the issues involved in running projects with charities.

Corsham Institute

On Tues I met up with Mark Jackson from Corsham Institute This was set up by a private philanthropist and works to ensure people have trust and security in the internet. They seek to achieve this by sponsoring research, learning and expertise. So a strong focus on ensuring people understand data issues and their rights.

Intersticia

An early morning skype call on Wed to counter the time difference as Anni Rowland-Campbell of Intersticia Foundation is in Sydney. I’ve heard rave reviews about Anni from people who have seen her speak at events. Intersticia Foundation has a strapline of ‘analogue leadership in a digital world’. In many ways their focus is on developing leadership in the not-for-profit sector acknowledging that tech is central to this. A really nice conversation and I look forward to meeting Anni in person one day.

Digital On Trust

Handheld videoWed afternoon I met with Julia Misselbrook who is Director of Development and Partnerships for Digital Opportunity Trust (DOT) UK. DOT is an international organisation based in Canada with a particular focus on Africa. They focus on young people to assist them in innovating and being entrepreneurs via the internet. Plus they encourage them to be ambassadors and leaders in their communities to explain the internet. Great to catch up and map out the UK tech for good / social tech eco-system.

The Developers’ Society

Fri afternoon to catch up with Jo Wickens from DEV – The Developer Society. This is a co-op of tech developers that specifically do tech for good.

Health and Efficiency

Gym

Managed to get 2 gym sessions in last week – Mon and Wed mornings. Did weights each time and treadmill. Though I did feel a pull in my left calf muscle on Wed and I thought ‘I better rest that’.

Jog-run disaster

pair of runner's calves

One of my bad results. As soon as I started running, I could feel the muscles in my left calf pulling. At the 2.7 km point I stopped as I could feel that the muscle could rupture at any point. Very disappointing.

Personal Development

Duolingo

map of europeDidn’t do my language training every day and I suspect this is too ambitious a target with work dominating my time so much. Bad days particularly on Tues (work) and Sat (conference). But also on Fri which was supposed to be my do nothing day, see below. Though actually in work on Fri afternoon.

Coding

A tiny bit of coding practice via Code Academy. But like so many things, I’m pretty sure this is going to have to wait until my sabbatical starts. At that point I am thinking of doing the ‘100 day challenge’ which is really what I have been trying to do with languages via Duolingo. You commit to do something, in this case coding, every day for 100 consecutive days.

Emails

Some progress in that I am managing to keep my personal and work emails down to 100 to be kept / actioned.

Do nothing day

So Fri turned into my do nothing day. It was not planned that way. I had intended to go to the gym before going to the office. My alarm went off at 6.30 and I was completely knackered. I crashed out and re-awoke at 8.30. Had to do a work conference call at 9.15 so no time to go to the gym. Concentrated on computer stuff over coffee before getting to my desk.  Only really a semi do nothing day.

Books and Reading

‘Sacrilege’ by S.J.Parris

A library book and the third in the series by author Stephanie Merritt writing under a false name. It’s the fictional adventures of the real-life ‘heretic’ monk Giordano Bruno who came to England from Italy during the reign of Elizabeth I. In reality he ended up being burnt at the stake by the Catholic Church. It’s all wonderfully historic being centred on Canterbury Cathedral and the bones of St Thomas Beckett. Lots of historical licence and a bit silly though a good under-current about betrayal. Still jolly good fun and reminiscent of the great Richard Shardlake books by C.J.Sansom.

Dr Who audio-adventures

‘The Whispering Forest’ (fifth Doctor + companions Tegan, Nyssa, Turlough)

A Big Finish adventure I listened to out of sequence. An OK one, indeed a very traditional Dr Who story. The survivors from a space expedition turn into primitives though some of the tech still operates and attains the status of magic. Reminded me a lot of the TV adventure ‘The Face of Evil’ (when Leela makes her first apperance) crossed with ‘Kinda’ and ‘Snakedance’.

Looking ahead

  • Half of next week, I will be in Northern Ireland. Flying out Wed morning to visit The Nerve Centre in Derry. Then do a session at FusionFest there on Thurs and the next day repeating it in Belfast.
  • Workshop on Tues to agree the Theory of Change for our new UK Tech for Good programme launching in Nov
  • Meetings lined up with Sam from SuperGlobal, Desigan Chinniah of Mozilla, and Good Tech Lab
  • Catch-up meeting with other funders who support TfG
  • Duolingo every day plus some coding practice.
  • Keep on top of emails now I’ve made some real progress
  • Gym, jog-run and yoga once each next week
  • Listen to a couple more Dr Who audio adventures

And finally…

I love these guys in St James Park

3 St James Park pelicans

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