“It lifts that weight because you’re holding it in all the time, and you’ve not had anybody to talk to.” – Carers UK Support Group member

Peer support can be a lifeline for people living with long-term conditions and their carers. It offers a link to practical advice and information from people who’ve been there, and a sense of connection and belonging, when our circumstances can make us feel adrift. This matters; it can make the difference between keeping our heads above water or going under. But the COVID-19 pandemic brought an abrupt halt to many peer support models – making face-to-face meetings, and a supportive hand on the shoulder, impossible. A period of rapid adaptation was forced upon us.

Over recent months, with Nesta’s support, National Voices has brought together over 100 individuals and organisations involved in peer support to share what they’ve learnt through this period, and to think about the future.

As we emerge from the pandemic the need for peer support will only grow – with years-long backlogs for treatment, more of us will have to cope without formal services. The shift away from hospitals to the community, which has long been an aspiration of the health system, is now a necessity.

“Meeting digitally has helped us all to keep going through hard times.” – British Lung Foundation Support Group member

At National Voices we know the value of peer support – the Peer Support Hub which we launched with the support of the Q-Lab provides access to high-quality evidence - but with so much changing we wanted to do more.

Our first priority was to learn together about the move to remote peer support. We drew on work done by mental health organisations and summarised our learning in a blog. While many of our experiences were common, no one model or solution has worked for all groups. Organisations can help set up groups or link individuals, but peer support happens between people – as we’ve gone remote the rules of engagement were renegotiated, with different results in every case.

The shift to remote has been challenging:

  • Gaps in digital access, skills and confidence have been a key issue and many groups first moved to the phone with online meetings added as confidence developed as we can see in Viv and Lyn’s story.
  • Those facilitating groups – whether as peers or staff – have been stretched. New ways of working, additional demand for support and the tough time's group members have faced have increased the burden on facilitators. In response, many organisations have provided additional training and peer-to-peer discussions for facilitators.
  • While a lifeline for some, remote peer support has drawbacks. Holding onto the fundamental values of peer support in a remote environment can be challenging. Power dynamics need rethinking when online “hosts” have control. It is also harder to provide a “safe space” when you can’t control the environments from which people join.

In February we explored online peer support in more detail. Zoom based sessions have made support accessible for some people as Della’s story demonstrates, but looking to the future the key issue is choice. Online groups should not be the only offer, but they might be a helpful alternative or supplement as the British Lung Foundation have begun to explore.

In all our work on peer support, we’ve heard that diversity of provision is key. With the NHS keen to improve access to quality peer support as part of the Universal Personalised Care commitment, there is an opportunity to improve access. But what “good” looks like will be different for different people, in different places and with different conditions. We need to avoid homogenisation – in fact, we still need more diversity, to ensure culturally relevant peer support is available across all communities.

In this context, we met in March to consider future opportunities and challenges. Our experiences through the pandemic demonstrated the value of learning together. We share a commitment to a vibrant, diverse and accessible peer support offer linked to, but not owned by, the health system. We know we could do better at talking about this with one voice, not many.

However, we know that effective collaboration takes time and resources and so we need to match our ambition with funding. We’re now exploring next steps, looking at how to connect peer support to the Universal Personalised Care offer and finding ways to build on the collaboration we’ve begun.

Below we have captured and shared three case studies from the Stroke Association, Carers UK and British Lung Foundation detailing the ways in which they have responded to COVID19.

The Stroke Association, Carers UK and the British Lung Foundation are three of eight organisations supported by Nesta’s Accelerating Idea’s programme. Funded by the National Lottery Community Fund, over the last 5 years the Accelerating Ideas programme has helped to scale eight innovations that help people to age well, feel connected to others and be part of active, engaged local communities. You can read more about the programme here.