User-led mental health groups in the time of COVID-19

The following is the text of a talk given by Mark Brown (@markoneinfour on Twitter) at the Mental Health Policy Research Unit’s event “Immediate impacts and future focus: Coronavirus and mental health services” via Zoom on 10th December 2020.

There’s not really one story to the Covid-19 pandemic.  People across the UK, and across the world have been experiencing the pandemic in different ways, depending on where they are, who they are, the conditions of their lives and communities as they entered the pandemic and the wider context of life and responses to Covid-19 where they are.  There’s not really one story to tell about how the pandemic has affected mental health, or the industries that attempt to preserve, maintain and promote it.

The coronavirus pandemic is a novel event.  It hasn’t happened before.  There have been other pandemics in history, but none of them arrived in this time, this place. The issue of mental health, who has it, who does not and who within communities has the capacity to improve it for themselves and others is not a fixed and eternal set of conditions.  What people choose to use their own experience of difficulty to do, and the means that they arrive at to do so, are as varied and vibrant as any other attempt to bring about change within communities.  Responses to the Covid-19 pandemic from March onwards suspended many of the ‘normal’ elements of community and service provision, creating a national situation without useful parallel. 

From May onwards, the murder of George Floyd and the subsequent outpouring of anger at racist policies, institutions and attitudes further focused minds on issues of racial inequality and broader structural inequalities. 

In the background the looming spectre of brexit, a decade of public spending cuts, local authorities with reduced spending power and more rapid changes of Westminster government than the UK is accustomed to created an already uncertain looking picture for mental health; onto which were heaped the privations and challenges of a national attempt to stop the spread of a potentially lethal virus mainly transmitted by one of the most treasured of mental health promoting tools: face to face conversation and human contact.

The jury is still out on the effect of the pandemic on the mental health of people.  It’s clear fewer mental health services were delivered than would have been if the pandemic had not happened.  No one yet has the single definitive account because events are still unfolding.  ‘Normal’ or what comes next after normal has not arrived.  

It’s clear to me that, eventually, the coronavirus pandemic will be the best documented pandemic in history thus far. But, for now, everyone is telling what they have seen and what they have observed from their own occluded viewpoint, limited to who and what it was possible to observe.  For some of us who have been shielding that has been the view from our window and the glow of our screens. For others it’s been flows of data.  For others still it’s been the experiences of others we could bring together or the outcomes we could measure.

The NSUN Covid Fund

Right now we can only share what we’ve witnessed.  Throughout the pandemic I’ve been working with the National Survivor User Network, a network of people with lived experience of mental ill-health, distress and trauma and organisations led by people who have lived with or are living with the same.  The concept of ‘user-led mental health organisations’ has a long and varied history, encompassing everything from pressure groups, to self help activity, to peer support to charitable service delivery.  NSUN’s membership includes organisations that fall into all of those categories and more besides.
Between April and July 2020, the NSUN Covid Fund distributed £120,000 to 88 user-led groups and organisations in England to support them in carrying out activity to support others mental health during the social distancing lockdown and beyond. 

The initial £60,000 was made available from the Department of Health and Social Care via the Coronavirus Mental Health Response Fund. 

Further additional funds of £50,000, released from the same Fund, were distributed to 10 organisations as part of efforts to support organisations and groups that served and came from racialised communities. Lankelly Chase contributed a further £10,000.

63 percent of the funding went to groups led by people from racialised communities.

Due to the need to distribute funds quickly, NSUN cast its net widely in advertising the funds, which led to applications from organisations that would not have necessarily described themselves as user-led mental health organisations, but who were certainly carrying out activities that supported people’s mental health and were certainly led by people who had experienced mental ill-health.

The stipulations for the fund were fairly simple. One: you had to be user-led. Two: you had to have a specific idea for how you would spend the funds you were asking for to help others mental health. Three: you had to spend the money to help people right now, or as near as possible.  Four: maximum available grant was £2000. Five: you had to tell us what happened and how you spent the money.

The process of application began with a short form. After an initial sift, applications were passed onto an NSUN associate who followed up with phone, zoom or email.  In combination with the initial application, a short written recommendation with additional background for the funding panel was  created and a shortlist created.  These shortlisted recommendations were discussed by a funding panel made up of NSUN Trustees and associates, including me.    

People applying didn’t need to have a bank account and didn’t need to be anything apart from an unconstituted group.  The whole point of the fund was to get small amounts of cash out to people with lived experience of mental health difficulty doing stuff right now. 

What did we see?

What we found from our applications was that people with lived experience were doing a number of things across England to look after people’s mental health. Applications came from across the spectrum of different types of organisation, everything from unconstituted mutual aid style groups to small charities to social enterprises.

The problems that people were trying to solve weren’t the problems that the NHS was trying to solve, nor were they trying to replace the things that NHS was struggling to provide.  It can’t be said too often that the NHS is not the sum of mental health or the only mechanism that influences people’s own mental health, no matter how vital services and treatments are.

Roughly speaking, successful applications fell into 8 categories:

  1. Money to use technology to keep in touch

Far and away the most commonly funded thing was a Zoom or other video conference license to better enable the holding of online sessions, discussion or similar. Also in this category were funds to purchase things like cheap tablet computers of laptops, either so a group itself could use them for video conferencing and social media or so that they could be distributed to people who didn’t have that technology. Similarly, money for data so that could happen.

2. Things to distribute

Craft materials and activities were popular things, as were things like PPE, masks and sanitizers and the information to go with them. At least one applicant used funds to make a newsletter/magazine to pop through people’s doors 

3. The booking of outside facilitators to run online sessions

Groups, recognising they didn’t really know how to offer things that people were missing booked outside facilitators, trainers or sessional workers to offer sessions online 

4. Money for petrol / money for mobiles

Groups asked for small funds to pay for socially distanced visits and to pay for phone bills to telephone people

5. The launching of new online things

Overlapping with the paying of outside facilitators, people asked for funds to help them to set up new online things, either as substitutes for things that they might prior to the pandemic have been doing face to face or taking the opportunity to launch something completely new which they felt would reach people who needed the thing they were offering. Some of that paid for things like Facebook ads and similar.

6. Making Radio for audiences for whom English isn’t a first language around mental health, or other broadcast radio

7. Other practical stuff

One group who supported women leaving abusive relationships asked for money to help pay for their storage lock-up for a couple of months so they could store clothes and furniture to distribute to people leaving their homes and possessions behind.  Another was setting up a helpline for LGBTQ+ people in the traveller community, set up by someone from that community.  The NSUN Covid fund didn’t fund food deliveries, but many groups included that in their request.  Practical deliveries of things like toiletries happened, as did informal problem solving over distance around things like benefits and access to other services.

8. General access to technology for the purpose of moving to remote working and online activity.

People put in applications for very specific bits of tech hardware or software to make it easier or more effective working online with existing communities.

What does it mean?

The NSUN Covid Fund found that there was an amazing range of people doing stuff that related to the mental health of others across England, and that many new groups and organisations became known to us through the process of providing access to small, specific amounts of funds for defined purposes.  Little things, at the right time, supported with few strings attached.  NSUN is evaluating how the fund went and will have more to say about it.

My observations were that there were 3 things happening:

  1. Groups of people were looking at ways they could keep together their communities of peers for mutual support when face to face meetings weren’t possible. You could call this keeping in touch.
  2. People were looking to provide support or other practical things to people they knew would be experiencing a gap or lack of service more generally. You could call this helping each other out.
  3. People were looking to create new online things that would reach people they may not have known already.  You could call this taking the opportunity to fill the vacuum.

Some of the applications were from organisations who already provided a service which was user or peer led to others in their wider community. These organisations were experiencing intense disruption to their plans for the year and did not have funds available to make the adaptations needed to offer things online or through other means.

Other applications were from groups trying to keep their community together until the time came when it would be possible to meet face to face again.

Others were about taking what had worked offline and translating it into online spaces.  These had more of a focus on outreach digitally and sometimes found that the profile of the people they were connecting with online was very different from those they had previously been together with offline prior to the pandemic.  Online it might be easier to attract interested people from around the world, but no one from your hometown.

More applications than you might expect came from ‘under the radar’ groups who were not registered charities, falling more under the banner of mutual aid as peer support than they did under any other sort of heading.  People getting together to sort stuff out who had been getting together to sort stuff out before the pandemic began.

During the first covid-19 related lockdown, mutual aid groups organised across the country to meet the needs of community members who were not having their needs met by paralysed or overstretched public services.  While mutual aid has a specific lineage of thought derived from anarchist self-organisation, mutual aid in practice was not necessarily by people who had arrived at the practice through political means.  Covid-19 Mutual Aid UK, a website set up as a clearing house for details of mutual aid groups defines mutual aid as:

“…where a group of people organise to meet their own needs, outside of the formal frameworks of charities, NGOs and government. It is, by definition, a horizontal mode of organising, in which all individuals are equally powerful. There are no ‘leaders’ or unelected ‘steering committees’ in mutual aid projects; there is only a group of people who work together as equals. 

Mutual aid isn’t about “saving” anyone; it’s about people coming together, in a spirit of solidarity, to support and look out for one another.  A mutual aid group is a volunteer lead initiative where groups of people in a particular area join together to support one another, meeting vital community needs without the help of official bodies. They do so in a way that prioritises those who are most vulnerable or otherwise unable to access help through regular channels.”

Groups across the country have been raising and distributing funds to meet essential needs without any recourse to anyone else. People have been getting on with doing things that other people can’t or won’t do.

For NSUN, the language or mutual aid helped to define a form of user-led group or activity that worked to their own ends within their own community without subscribing to ideas, practices or worldviews propagated by statutory or large charity bodies. This autonomous mental health related action, led by people’s lived experience and meeting immediate and vital needs,  focused on building community and meeting community aims first, on its own terms, had often previously flown beneath the radar of wider mental health discussion because it is people getting on with stuff, not just advocating for other people to do stuff. That’s an area I’ve been exploring for NSUN this year, with a bit of research coming out soon.

The final thing that we saw was that groups we might have expected to put in applications, didn’t.  Some groups and organisations have become moribund, waiting out the lockdowns and the social distancing.  Others have found ways of meeting in person safely without turning to technology.  Digital hasn’t been the only way people have kept in touch with each other or helped each other out.  People have been far more inventive than that.  But people also know that community action can only do so much where government policy and statutory and charity services can’t or won’t provide the things people need.  They need those services and support to step up, too. 

At NSUN we’ve been learning and speaking to people and marvelling at everything people who live with mental ill-health, distress and trauma have done to help each other.  People have turned up, put their time and resources where their mouth is and solved problems that could be solved as best they could.

That’s the story we’ve seen.  It’s not the only story.  But it’s one you might have missed.  And it’s one that needs to be recognised.