What time is it ? Curation time. That’s what time it is.

This is a guest blog by Katie Brown
Curation
1. The act of curating, of organizing and maintaining a collection of artworks or artifacts.

We twitter, facebook, we have blogs, tumblrs, and instagram and the share button is ubiquitous with us now. We share, reblog, retweet, pass on and on and on we go. We follow people online that we know and that we don’t know, we may follow them for a variety of reasons, they’re interesting, we like them, we don’t like them and they share things that matter to us.

We’ve got savvier at understanding our online voice and what people are interested in following us for. I can tell you that when I post about social issues on my social media they will be commented on, shared, almost as much as a video of kittens. When I post about rock and roll, not so much. In platforms that enable and encourage multi purpose conversation we make judgements about how following someone and what they post, is relevant to us. We revel in finding that one twitter person who also has a bizarrely nerdy love of pens and talks about them in detail, posts found photos of terrible graffiti and has in-depth knowledge of motorbikes. Well, maybe that’s just me. But you know what I mean, someone who has similar and possibly more knowledge on the things that interest you and shares them in a way that is funny and insightful and engaging.

The emergence of curation as something no longer restricted to galleries, museums and research collections, picked up on this social sharing phenomena.
Wikipedia is crowd-sourced curation of world knowledge. Quora presents the best answers to questions in your areas of interests in a monthly round up email.
Cowbird provides one with the means to create collections of stories written by others.

At some of the more progressive and crossover festivals that attract unique, innovative and experimental artists and attendees we’ve seen the return of the music artist as curator. We see how powerful this idea is in Yoko’s residency at Meltdown in London’s Southbank. Her connections and canon in rock history enabled her to bring together artists (content, if you will) of such a powerful, iconic ilk.

Curator as definer in popular culture is taking on greater resonance.

Maria Popova of Brainpickings is one of these ‘celebrity’ online curators. Celebrity, is a strange word to define someone who is a nerd for information, works at home and likely you would never skip a beat if you saw her on the street. But she is well known for her work, with over 436K followers on twitter and write ups in the New York Times. Brainpickings was included in the Library of Congress permanent web archive in 2012.
Her ability to weave beautifully put together ruminations on artistic, creative and philosophical visionaries and icons and their role in society. Brings books, art, ideas to life and makes them both accessible and gives them a down to earth relevancy.

Innovation is not necessarily brand new ideas, innovation can be bringing ideas from one sphere and applying them to another. Curation moving from real world artifacts to online artifacts is one such example.

I’m curious as to why mental health as a sphere has been slower to adopt some of the onlineism’s that other areas have picked up more readily. I was around at the very beginning of digital mental health and been involved right through to it’s verge into mainstreaming (of course I have some caveats on what exactly defines the mental health mainstream, but that’s probably a post for another day).

I think its time for mental health to innovate by adopting the online cultures that are now becoming our defining norms for how we share, disseminate and build our knowledge and networks.

I think its time for mental health to get its curation on.

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Young people and self-harm. The 5 essential questions answered.

1. What should I know?
2. How can I help?
3. What works?
4. Where to go next?
5. What do young people say?

1. What should I know?

“I want to ask you a question: what do you think when you see the cuts on my arms: attention seeker? Deliberate self-harmer? Depression? High risk? Or a young person like any other with hopes and dreams, friends and family who just happens to have a mental illness.”

Said by a young mental health activist talking to an audience of professionals. Why do they do it? This is perhaps the most common question asked about young people who self-harm. Each young person is unique and no one answer will explain the whole story for everyone. But there are some common facts about self-harm and it will help you to help a young person if you have accurate information.

  • Self-harm is common among younger people. A survey of young people aged 15–16 years estimated that more than 10% of girls and more than 3% of boys had self-harmed in the previous year.Both boys and girls self-harm across a very broad age range. Rarely, although it is known, children as young as six self-harm and it can continue through someone’s teens and into adult life.
  • Self-harm is not only about cutting and may not be to the wrist or forearms. It can involve burning, bruising, taking an overdose, pulling hair or picking skin. There are emotional ways of self-harming too, such as closing oneself off from loved ones in a very determined way.
  • The seriousness of the underlying problem cannot be measured by how bad the injury is. People who hurt themselves a bit can feel just as bad as those who hurt themselves a lot.
  • Self-harming can be hidden and many hurt themselves secretly for a long time before others find out.

Why young people self-harm

There are many possible reasons behind self-harming and these include:

-       Having a lot of pressures at home or at school
-       Experiencing difficulties with family and friends
-       Being bullied or pressured by peers to fit in
-       Suffering abuse
-       Worrying about personal identity, sexuality, race, culture or religion
-       Struggling with practical things about money, education, employment or housing.

Many young people experience the issues listed above but not all of them self-harm. Young people react to and deal with emotional stress and trauma in many different ways. Those who self-harm often say they do it because it releases an unbearable tension and that the pain they inflict while self-harming takes away the bigger emotional pain, for a while.

Why young people want to stop self-harming

Young people often reach the point at which they want to stop self-harming; the main reasons given are they:

  • Begin to see that they are “growing out” of it – it begins to feel like an ineffective way to deal with life problems
  • Start to find other, more positive, ways of coping and want to improve their overall mental health
  • Want to take care of their physical health
  • Feel the shame, embarrassment or secrecy becomes too overwhelming and uncomfortable
  • Need to escape pressure and reactions from others
  • Dislike the physical scars it leaves behind
  • Recognise the pain it causes to their friends and families
  • Realise it is no longer working or helping them to cope.

Why you should take it seriously Young people who self-harm often feel embarrassed and guilty; depressed and afraid; helpless, isolated and out of control. While many young people who self-harm do it as a way of dealing with the problems in their lives, a small number have different motives and may be considering suicide. There is often no obvious way that we can tell the difference between the two, so it is even more important that we do everything we can to understand and support every young person we suspect to be self-harming.

In this section we used these sources of information and evidence:

Fox, C., & Hawton, K., (2004) Deliberate Self-harm in Adolescence. London: Jessica Kingsley Publishers http://www.selfharm.co.uk/get/facts/what_is_self-harm

National Institute for Health and Clinical Excellence (NICE) Self-harm – CG16 http://www.nice.org.uk/cg16

YoungMinds booklet Worried about self-harm?  http://www.youngminds.org.uk/assets/0000/7354/Self-Harm__Single_page_.pdf 2.

How can I help?

What have I done? What could I have done? Why didn’t I know? Why didn’t you tell me sooner? Self-harming is shocking and hard to understand. As family, friends and workers, we can feel baffled and at sea. We may struggle with feelings of guilt and blame. Try to keep unhelpful thoughts out of your mind and focus instead on what you can do. It helps if you start by:

  • Being observant
  • Recognising some possible signs, such as a young person wearing long sleeves all the time, even in hot weather, constantly picking at scabs or often wearing bandages and plasters, including on the wrists.
  • Acknowledging that there are things in the young person’s life causing self-harming, which you may know not know about. This may partly be their way of coping. It might bring some release and relief.
  • Getting underneath the self-harm itself and being open to understanding why the young person is doing it.
  • Looking out for signs of peer pressure.
  • Taking care not to address the issue in public, but finding a moment where you can have a private conversation.

Here are some broad questions that may be helpful in supporting a young person:

-        What was going on that first caused you to think about self-harming?
-        What seems to trigger that feeling now?
-        Are there any patterns about where you are or who you are with?
-        Are there things deeply worrying you that you feel you can’t share with someone else?
-        What helps you cope when you feel upset?
-        Is there a special person to talk to, place to go where you feel safe or something to do that helps you?
-        Who else knows of what is happening to you and who would it be best to let know? Do you need support to do that? Have you been to the GP? If so, how did that go? If not, should we see about making an appointment?

  • Check out some websites that explain distraction techniques and be familiar with them. Distraction has been shown to help some people by easing the urge to self-harm, but be aware that not all techniques work for all people.
  • Make sure the young person knows who to contact when they’re on their own, such as ChildLine or the Samaritans, but also local supports and services.
  • You may need to let the young person know that if you are really concerned about the risk to them or to others, you can’t keep this to yourself. Be clear about who you need to tell and why, what may be written down and what might happen next.
  • Weigh up the risk of significant harm and let others know if you are worried for the young person’s safety, doing everything you can to get the young person’s knowledge and agreement.
  • If you are working with young people in a paid job or as a volunteer, your workplace will have policies and guidelines about safeguarding and there will be a named safeguarding lead you can talk to.

In this section we used these sources of information and evidence:

McDougall, T, Armstrong, M and Trainor, G (2010)Helping Children and Young People Who Self-harm. An introduction to self-harming and suicidal behaviours for health professionals. Routledge

National Self Harm Network  http://www.nshn.co.uk/downloads/Distractions.pdf

3. What works? You can help a young person access further support and services, and may be able to prevent them from reaching a crisis. Dealing with a young person’s disclosure does not require any special skills or extra training. You need to be aware of your own feelings in aiming to treat the young person with respect, unconditional regard and warmth.  Then you can use your core skills and be a good listener, making sure the young person gets the help they need – and want.

  • Listening and taking the young person seriously works.

One really helpful skill is the ability to signpost to services that provide what the young person wants. Research carried out by the Mental Health Foundation in 2006 and relevant now and gives us a clear picture of the sorts of support young people want. 85 percent of young people wanted individual support and counselling, while 71 percent wanted drop-in services with group support. A large proportion of young people (61 percent) asked for self help groups with some adult support, while a further 20 percent were keen on self help with no adult help. All young people wanted (and still want) access to accurate information in a choice of formats – including online, print based and helplines. Sometimes people are so distressed they don’t know what they want and it could be helpful to use some of these ideas as suggestions

  • Work with the young person to find the right support for them

In environments in which children and young people are not supervised, all medicines and potentially harmful substances should be locked away. Knives, razors and other potential cutting instruments should be removed.

  • Reduce the opportunity for the young person to self harm

If you are able to help a young person early on, when the self-harm has only just begun, you could be helping to prevent it becoming more serious. Stepping in to support at this stage is called “early intervention” and the evidence shows the earlier, the better.

  • Don’t delay addressing the issue

In this section we used these sources of information and evidence:

Mental Health Foundation (2006) Truth Hurts Report. The final report of the National Inquiry into self-harm among young people. http://www.mentalhealth.org.uk/publications/?entryid5=38712&q=684278%c2%actruth+hurts%c2%ac

National Institute for Health and Clinical Excellence (NICE) Self-harm – CG16 http://www.nice.org.uk/cg16

4. Where to go next? There are many resources, groups and organisations that can help you. Here are a few:

Sometimes you will meet young people whose self-harming is frequent and/or severe and extremely worrying. They could have other issues, like substance misuse or mental health difficulties. You must help those young people get specialist help, for example through their GP or A&E service. If you find a young person who has self-harmed causing a wound that is bleeding profusely, or if you suspect the young person has swallowed any form of toxic substance, including overdosing on medication and/or alcohol, you must get the young person to A&E straight away. The most helpful actions you can take are:

  • Recognise a potential emergency and contact emergency services on 999 immediately.
  • Assist the emergency services by giving clear directions about the location of the young person, their name, your name and your relationship to the young person.
  • Reassure the young person and gently but persistently ask neutral questions to establish what has happened.
  • Accompany the young person to the A&E department and wait with them until other arrangements are made.
  • Tell A&E staff all the facts you have gathered.
  • Stay until you are sure the young person is happy for you to leave and is receiving appropriate treatment.

You must not attempt to give first aid unless you have been trained and it is up to date. If you work or volunteer with young people you should know about the first aid procedures in your organisation and you will have a named first aider. If you are not a trained first aider the best “first aid” you can provide is a calm, empathic presence, being non-judgmental and supportive, encouraging the young person to talk and trying to establish some facts so you can help the first aider and/or other services when they arrive.

In this section we used these sources of information and evidence: Anderson, Y., and Nixon, B., (2011) Self harm in children and young people Handbook http://www.cernis.co.uk/pdf/handbook.pdf National Institute for Health and Clinical Excellence (NICE) Self-harm – CG16 http://www.nice.org.uk/cg16

5. What do young people say? Young people’s stories are an important part of helping us understand and know what to do and what not to do. The story below is one young man’s journey.

Self-harm started for me when I was 14. The last time I self harmed was 6 months ago.It initially began when I was in school and struggling with sexuality. I came out as gay, I indulged in sexual promiscuity and the combination of a poor home life, bullying in school and coming to grips with my feelings for other men built up. I found solace in an older gentleman. This older man to me was a friend, but looking back I was groomed and abused by this man. A diagnosis of HIV soon followed after repeatedly having flu like symptoms.At this point in my life everything seemed messy. I was struggling in school. Struggling at home. Struggling still to understand what my sexuality meant to me. I was scared. I was struggling to understand what HIV was. I was in the care of the police, sexual health services, social services and mental health services. There was a feel of chaos and little stability in my life.I initially self harmed with the belief it will end my life. I remember going into the bathroom around tea time, locking the door and turning on the shower. I picked up some scissors and I cut my wrists. At that moment I wanted to die. I felt disgusting. I didn’t want to be here. This led to me being admitted into a psychiatric unit. The coming year or two I was in and out of this hospital. Until I reached 19 I was In no talk health services receiving care. I received a wrongful mental health diagnosis and was wrongly treated as was said by the GMC. The bulk of my self-harm began when I was 15. I felt like the physical pain I was inflicting into myself was detaching away from the greater more intense emotional pain I was suffering. It was a way if me controlling my pain. For 18 months I felt like I was in control by self-harming, only now looking back I realise just how little control I actually had. There was a gap between me being 16 and 18 where no self-harm happened. I managed to find other ways of distracting myself. At first I had urges whenever a bad mood struck me, but then I began to realise it’s just a bad mood. All my previous feelings about myself have gone. I want to be here. Since I self-harmed at 16 I have had one major relapse, and this time the cutting made me feel worse. I felt like all my work I had come through had been wasted. I felt like I had lost control once more. I am not going to say I will never hurt myself again. And I am never going to say I will hurt myself again, I feel the most important thing for me to recognise is that I have got through self harming and the feelings I had after I most recently self harmed proved to me that I no longer found self harming an activity that enabled me to vent out my feelings.it no longer gave me that doped up coke like state of being zoned out. It made me feel worthless. Today. Marks aren’t visible. I have a few in places people can easily see. But I’ve moved on to a point where I am able to just look at my body and see it as my body rather than a body with scars and burns all over.  Family are still a little shy of it as when I am around company we don’t know so well, they prefer I make sure I am covered up to avoid questions. But mostly if people see me as being fine and getting on with things, then questions usually aren’t asked. I have moved away from centering my attention on mental health. I feel healthier and happier being a normal 19 year old who faces life’s challenges.

………more thoughts………..

I’m scared I’m doing the wrong thing – or I’m going to do more harm than good.

It is really common for people who don’t have any training in mental health to be worried about causing harm in their attempts to help. We have a few ideas about this:

Do what you already know how to do well. Have empathy – try to put yourself in that young person’s shoes and see the world as they see it. Don’t judge – it is never helpful to tell someone that they are causing problems for others, or to make them feel shame. That will just add another burden to that young person, who already feels they can’t cope. Show concern – it is genuine and sincere. Listen hard and pay attention to what is said – and not said. Offer practical advice – places to go, people to see.

Don’t try to do what you are not qualified for If you are not a counsellor or therapist there are limits to how much support you can offer to someone with significant or severe problems. Your skill will be in helping to find the counsellor or therapist and supporting the young person to engage with them.

Know how to access a specialist service If a young person you know has a real problem with self-harm and probably with mental health issues as well, you can help them get a specialist service.  For those aged 18 and under this will be a referral to child and adolescent mental health services (CAMHS). Often it needs to go through a GP, but more and more CAMHS are now taking self-referral. Young people aged 19 and over definitely need to see their GP as specialist adult mental health services have strict criteria. Many GP surgeries now have counsellors or psychologists on site.

Always share your concerns An old saying goes: A problem shared is a problem halved. It is easy to get things out of perspective – we all do it. Sharing your worries and concerns with a trusted friend can help you sort out in your own mind what you are going to do for the best. If you are a professional or volunteer, be careful not to identify the young person as that would be breaking confidentiality.

How do I deal with my own emotions when hearing about or discovering a young person’s self-harming?

Reactions could include:

Feeling: sorrow, alarm, panic, anxiety, shock.

Being:  scared, distressed, upset, taken aback, fazed, freaked out, repulsed, bewildered, frustrated, mystified.

It is perfectly normal and acceptable to have a range of feelings and reactions to self-harm. What we need to do is think about our responses and manage our feelings so that we don’t let them paralyse us, or prevent us from being helpful and calm. Be honest with yourself – if your feelings are strong and you cannot hide them, then talk with a friend or colleague about it and find someone else to work with the young person. It is very hard for anyone to understand why a young person is self-harming. You may feel guilty and wonder what you have done wrong. You might feel angry at the young person, thinking Why are you doing this? But remember it is no ones fault. If you can get past these feelings and manage to use the helping skills of having empathy, being non-judgmental, listening and paying attention, then you can still support the young person. But – examine yourself closely – there is nothing wrong with finding someone else to help. If you feel the need to express your emotions, make sure you do it with someone you trust – but don’t add your stress to the young person.  

What do I do if the young person won’t accept help?

One of our team worked with a young person who refused help from anyone except her. She was not trained in counselling and at the time didn’t know much about mental health. In discussion with her supervisor they agreed that the worker would make a list of helpful websites and other self help resources and give it to the young person, encouraging him to use it. She then informed him that if they continued to work together around his self-harming she would be discussing it with her supervisor on a regular basis and she asked for his consent to share information. The worker felt that the young person needed to know that by choosing to confide only in her, he was placing her under pressure and creating risk that she needed to manage. If a young person won’t accept help at all you can only keep trying in as many different ways as you can, and be open about your concerns with others – there may be things you haven’t tried, or people who could help better.

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Assumptions closer to home

We had our latest team meeting in the brilliant East Street Arts Centre, Leeds, to plan the paper prototyping.

Turns out that between us we had a few different versions of what we’re doing!

I take responsibility for most of the misunderstanding, as I know I am still making the same assumption that I always have, which goes roughly like this:

I understand perfectly and I have explained to others. Therefore we all now have a shared understanding.

Well no actually.

Luckily it wasn’t long before we realised we were talking at cross purposes. And we sorted it. But it made me think about how Lean method runs counter to the way most of us have been conditioned to think.

We have been trained to build products and services based on need. Lean says go out and find out what people want then build that.

We are accustomed to trying all sorts of publicity and dissemination to convince people to use our products and services. Lean says build the product that solves the person’s problem and they will want it enough to pay for it.(Find the killer headache, make the magic pill.)

We have been praised for being completer-finishers, having attention to detail and creating beautiful, fully formed products. Lean says make the minimum viable product and just get it out there. Keep testing. Iterate.

Having worked through these tensions we reached agreement (I think) and went on to create our paper prototype, which was very demanding, rewarding and tiring.

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Keep the Trust: how we started to get lean

So, somehow the thinking around Keep the Trust was bothering Katie and me. We had won the tender (hooray!), submitted a project plan and GANNT chart and were ready to rock and roll. Without communicating with one another we were both wondering why the project wasn’t exciting us as much as it should and what we could do about that, given that we were committed to honour the Innovation Labs co-production process – essentially responding to what young people want.

My ideas crystallised when I participated in Lean Start up Machine (mantra: “Invalidate my assumptions”) and came away questioning all the assumptions underlying the development of Keep the Trust. Katie, already a lean thinker, was completely up for a fresh approach. We talked it through first with our mentor James, then with the rest of the team, Nico, Lydia and Jonathon.

In related posts I have described what those assumptions were, why we questioned them and what we changed as a result. Here it’s worth saying that although we did this critical thinking early on in the project, it still felt like turning round a juggernaut. With our dispersed team (London and Leeds) we can’t have impromptu meetings or catch-ups and we rely a lot on digital communication, so it was a challenge to keep ourselves functioning as a unit while we were making the changes.

It was also a bit anxiety producing to be changing the project plan, given that the plan is what we are monitored against and determines the funding. And there’s the paradox of innovating with a charity grant – innovators expect a dozen failures before one success. Failure is great learning – but you can’t really fail with public money!

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Keep the Trust: challenging assumptions

The specification for KTT came from Innovation Labs. The summary states:

Keep the Trust is an online resource for non-mental health professionals who are working with young people with mental health problems.It provides information on:
● how to deal with mental health related issues in a variety of youth settings;
● how to work proactively with young people to improve their mental health and wellbeing.
As a result of using it professionals will have greater skill, knowledge and confidence in supporting young people with emerging or existing mental health issues, who will in turn have a better support experience and need less specialist interventions.

OK. The assumptions underlying the above summary can quite quickly be validated with evidence that happens to concur with (my) professional experience. I have posted some of that evidence, adapted from the spec, if you want to know more.

But where lean thinking comes in is here: formal evidence tends to give us a validation of need – that is need determined by policy, government aspiration, comparisons and so on. Lean approaches are more interested in what people want and the evidence for that want is in their observed or reported behaviours.

The more problematic assumptions came in our proposal, which in turn determined the project plan:

Keep the Trust will provide non-mental health professionals with a comprehensive signposting tool to direct them to existing online resources pertaining to young people’s mental health. When developing Keep the Trust, we intend to begin by capitalising on the material currently available free of charge, including resources developed by Cernis, Mental Health Foundation, Centre for Excellence in InterDisciplinary Mental Health, National Deaf Children’s Society and Dipex.

The huge assumptions here were:

  • Professionals want these existing online resources

and

  • Currently they can’t find them on their own.

In fact we have absolutely no evidence that people want any of the existing resources. If as we suspect they don’t particularly want them, there will be no take-up and no sustainability.

We decided to ask first.

But asking the right questions of the right people can take a bit of time, so we also delved into our experiences of working with non mental health professionals, including young people themselves. We had bits and pieces of workshop materials, feedback from consultations, results of training needs analyses and our own experience. We tried really hard to be empathic and sit in the shoes of the people we will be targeting.

What’s happening now is we are contacting as many people as we can through social networks, to find out what they want and invite them to join in. When we have spread the net as wide as we can we will be focussing in on some face to face groups. To support the process we have produced a skeleton framework populated with draft content – but this is designed to flex and change as we listen to our customers and understand them better.

Everyone thought that BlackBerry is the de-facto gold-standard for smartphones until the iPhone came around and consumer behavior shifted.

Bernhard Schindlholzer in Customer Experience

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Keep the Trust: validated assumptions

Assumption

Validation

Non-mental health workers who work with young people can be identified

Non-mental health workers include midwives, health visitors, tutors, social workers,  Citizens Advice staff, housing and employment support workers and youth and community workers to name but a few. They are also often the first point of contact for young people with emerging mental health issues.

Non-mental health workers struggle to support young people with mental health issues

Many practitioners, such as college tutors, do not receive initial training in mental health awareness. 30% of participants in 2010’s CAMHS review reported that their access to training and development opportunities in supporting young people’s mental health issues was poor.

It’s not just about understanding their mental health needs, it’s about understanding their mental health needs as 16-25 year olds

Non-mental health workers have an important role to play in supporting mental health

The services they provide are often considered to be early intervention mental health services in that they are universal services (e.g. clinics, youth centres, welfare services etc) available to all and staffed by people whose primary qualification is not in mental health. There are also targeted services aimed at specific groups of young people, or with the purpose of meeting a particular need or vulnerability, such as counselling and services for those not in education, employment, or training (NEET).

There are benefits to early intervention

There is a large, respectable, trustworthy evidence base for early intervention. It’s both inherently better and cheaper than late intervention. For young people with mental health issues it can mean getting earlier support in a non-mental health setting where they may feel more comfortable. This can reduce the likelihood of their deterioration in their symptoms or reaching crisis point.

Young people want mental health services that they can access in general, young person friendly settings

Young people have said consistently and repeatedly that they wish to choose the setting in which they receive support for mental health difficulties. The settings they most frequently choose are those with which they are already familiar and in which they feel unthreatened and comfortable. Many young people find specialist mental health services stigmatising and prefer more low-key support.

All this is important

2010’s CAMHS review clearly identified the need for a workforce who:

-   understand what mental health and psychological well-being is;

-   know what they can do to improve it;

-   have access, in a way that is relevant to them, to an accessible and high-quality body of knowledge that covers both the growing evidence base on interventions to improve mental health, as well as best practice in working with young people.

Time for Change’s approach is based on a similar view: “studies show that roughly half of all lifetime mental health problems start by the mid-teens, and three quarters by the mid-20s. Ultimately, our aim is that young people who experience any mental health problems can receive support and understanding from those around them”.

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Keep the Trust: initial thoughts

Just landed here? So you care about young people’s mental health, check out this page first.

Very simply, this is what we are making:

Schematic map of KTT

….and very simply this is why:

customers

More about sixteen25 here and more about Keep the Trust here.

Added on 17 July: post on content creation

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