‘I love the Hera group, using different parts of my brain to create in new fresh ways and explore different themes each week. It’s also good to connect as I’m housebound due to my health. I’m really enjoying it.’

Patients are invited to engage on the basis of what they might find appealing, not what is ‘wrong’ with them. In general, we do not categorise people by their symptoms, although we do our best to listen and adapt in order that people feel understood and supported. Several of our artists have undertaken training in trauma-informed practice: we share the view of our clinical colleagues that trauma is under-reported and often underlies other ‘presenting’ conditions.

In each group, the artist-facilitator is encouraged to play to their own strengths and artistic interests, and to focus on creating a safe, non-judgemental space for patients to explore their creativity. There are no ‘correct’ answers. The process is more important than the product but having said that some of the work produced is extra – ordinary. People surprise themselves with what they can do once they accept permission to try (and the same can be said when we run groups for health care colleagues). It is also, we hope, a fun and enjoyable process. With singing and dance, group leaders have had to be particularly ingenious to make the sessions effective and to promote inclusivity and involvement – but the feedback is overwhelmingly positive.

We still work out of BHWC, and in 2019 extended the offer across all three of our primary care network (PCN) practices. At the start of the first lockdown, we moved the entire programme online (in the space of about a week) and made it available through all GP practices in Brighton & Hove, for anyone living with ongoing physical and/or mental health concerns. We are currently working with patients from 11 different surgeries.

‘I enjoyed being able to find out how to link up with other people on the internet and it gave me an opportunity to try to get my interest in photography back.’

For those people not confident in using online technology we teamed up with the charity AbilityNet to provide one-to-one support with learning digital skills. More recently we have been able to access free tablets and wifi for some patients living with neurodiversity or mental health concerns, through our partners Diversity & Ability. We also offered additional training to colleagues to build their skills and confidence is using the technology, and a whole team training day for 89 primary care colleagues in arts for health and social prescribing. We have developed additional strands over the year to support some of those most at risk of avoidable decline, including Art in the Park for young people, taster sessions for refugees and asylum seekers (some of whom have no recourse to public funds so are effectively destitute), and outdoor Men Who Make crafting and stone-carving sessions for men of working age with mental health concerns.

‘I was only able to attend one session due to other factors on my life needing sorting, leaving me in a chaotic home situation and problems with internet access at times. That having been said, the group was very inclusive and I found the instruction clear and supportive. My home situation and my mental health is much more stable at the moment so I would like an opportunity to continue with this group if any places are available.’

The Hera arts team works alongside the NHS Social Prescribing Link Workers for the PCN, and the charity supported around 750 people last year, a number which grows all the time. People may engage for just a few sessions, or they may stay with us for as much as over a year. We try to avoid having any kind of waiting list where we can, as we know that a poor experience of waiting for statutory services is one very frequently cited source of distress. Having just reviewed the equalities monitoring data for 2020, it is pleasing to see that Hera’s demographic reach is reflective of our local population in terms of gender, ethnicity and age – it is not just the middle classes or ‘worried well’ who engage. Around 70% of participants have a total household income of less than £20,000 a year.

Many live alone and have experienced extreme isolation during the pandemic, often because they were shielding but that frequently came on top of pre-existing loneliness. Around 30% of participants refer themselves directly to the programme now, rather than needing to go through their GP.

‘I love the group I am with; I was invited by an existing attendee. The people on it are very interesting and I feel we are all on the same page somehow with our chatting. The artist is full of good ideas and we do something different every week. She has a lovely gift of making us all feel included and special.’

Jane’s story

Jane came to us in late 2019, referred by her GP. She was approaching her 70th birthday, and lives with chronic obstructive pulmonary disease (COPD) and painful arthritis. She lives alone in social housing and is in remission from cancer. In the spring of that year she had experienced the death of her partner, who had had a long struggle with poor mental health including addiction. Even before his death, Jane was having a tough time dealing with his behaviour and health problems, and his death was left her with complex, unmanageable feelings of bereavement and loss. By the time she engaged with us, Jane was in extreme isolation – her nearest family member was 200 miles away – and her own mental and physical health was declining fast.

She found attending her first in-person writing group nerve-wracking. She was quiet, withdrawn and mistrustful. But she did come back the next week, and the next. When the group had to go online, she was unsure, and using the technology made her feel extremely anxious. Still she came, and persevered till she got used to the screen. As she had to shield from Covid, in some weeks the group was her only direct human contact. She spent an entire year on her own. And tentatively she started to write with the group, growing more willing to read out what she had written to others. Using the frame of creative forms like free verse, villanelles, short stories, journals and letters, she little-by-little found ways to process different aspects of her trauma. In so doing she also offered comfort and companionship to other members of the group.

In late 2020, Jane was able to seek the support of her housing association to move the 200 miles needed to be near her daughter – still in lockdown and still online, she continues to come to the writing group. She is a willing, gentle, thoughtful and generous contributor. On Jane’s initiative, she and other members have now decided to set up their own group on Whatsapp, so they they can stay in touch outside of the sessions, support each other, and continue to encourage each other’s creativity in the safe space the project made for them.

They were recently joined by a younger, very vulnerable woman, to whom Jane shows a kindness and compassion which is its own medicine. These two people have very different cultural backgrounds and lives yet share the experience of complex trauma. They have become friends and mutual supports in a way that could not have happened in the context of a purely clinical consultation. Jane says:

‘If you had seen me a year ago, I could barely function, barely speak. I don’t know what happens in this group but it is magical. It has saved me. I couldn’t have got this far without it. And the writing – I used to like writing and now I can do it again. I do it every week. It’s part of the air I breathe.’

Jane talks readily now about how she is feeling, and about the continuing impact of isolation. She explores openly and candidly where she is in her recovery, and is starting, slowly, to explore and imagine a future for herself.

To understand how this simple-but-complex process works, some elements can be seen to be borrowed from person-centred counselling – attentive listening, empathy, authenticity, being positive and non-judgemental. Some elements are derived from community development – respecting agency and the experiences of everyday life, creating the conditions for diverse people to collaborate and thrive in groups. But the keys are creativity and ‘safe space’ – unlocking thought processes and ‘giving permission’ for people (any people) to try new things, to encounter new ideas, to fail, and also, critically, to succeed and surprise themselves and each other.

We look to dismantle artistic stereotypes – who can be an artist – and demonstrate in practice what we genuinely believe, which is that the creative urge impulse is part of our fundamental humanity. Imaginative exercises that explore things like tone of voice, point of view, telling detail, memory, dialogue or the senses can offer a way to bypass frozen feelings, fear, inhibition. They give a route back to fragments of the self, and by a process of trial and error build courage and a route forward to remaking the oneself, reimagining a life, in society, that is actually liveable.

‘Patients are invited to engage on the basis of what they might find appealing, not what is ‘wrong’ with them’

The barriers

Progress towards holistic care that helps people like Jane is uneven and there are strong sites of resistance. Where medicine works with communities, barriers related to social and economic harms to health can be addressed. In Brighton in particular we see higher than average rates of poor mental health, addiction, inadequate or insecure housing, falls among the elderly and, surprisingly given the city’s reputation, social isolation, all evidenced by the city’s Joint Strategic Needs Assessment (www.bhconnected.org.uk/content/needs-assessments) as well as by the day-to-day experience of GPs. Demands on statutory services are intense, and need is often not met.

This means that some of the people we support have a greater degree of health or wellbeing challenge than might be the case with arts and health or social prescribing schemes in other locations (we see this with our Social Prescribing clients as well). We are fortunate at BHWC to enjoy close working arrangements with our clinical colleagues, but in the face of the huge pressures on colleagues in other practices it has taken time and patience to build those newer relationships.

‘The creative writing group was an amazing experience. We worked on journaling which has become a really important tool for me, and writing has also started to become an outlet for expression which I lost long ago. The peers in my group were different to me but in a very adequate [sic] sense of mind and state, and their participation was always a plus. They also wrote very interesting things and gave good feedback.’

The language of medicine and the language of creativity are not always natural bedfellows, so listening empathetically to our colleagues is just as important as listening empathetically to patients – or participants, as we generally call them. Covid has only made this more important. It is also true that we must redouble our efforts to make sure that we do is presented in terms that make sense to busy GPs.

‘I liked learning. I was surprised at my ability. And I liked the manner of the teacher. Very accommodating and encouraging.’

The future

Recently we have begun (with partner organisations including the Citizens’ Advice Bureau and community development charity the Hangleton & Knoll Project) a new pilot to offer a one-year programme of creative activities, advice and other support around the social determinants of health through the joint NHS/Arts Council Thriving Communities scheme. This will be formally linked to NHS social prescribing in the western part of the city and specifically targeted at those most adversely affected by the pandemic.

Learning from Covid, and the additional community reach that the technology gave us, we have decided to plan for a ‘blended offer’ in future, with both digital and in-person activities. Always we try to design what we do with our participants’ interests and preferences in mind, and optimise the opportunities offered by the creative ingenuity of our arts team. It helps to reference over and over again the real people involved and the stories they tell us. Because of that process, we plan to integrate more ‘green prescribing’ too, building on a partnership with the South Downs National Park in 2020 called Deep Time (https://sites.google.com/readysaltedcode.com/deeptime).

We are talking to primary care colleagues to develop an integrated group consultation programme that addresses a range of both medical and social issues, using both creative and clinical knowledge, and to the PCN’s community pharmacy team to work collaboratively on de-prescribing opioids (a priority issue for the NHS).

Over time what we would like to see most of all is a programme of diverse, professionally-led creative group activities available within all GP practices in our city, sustainably supported and fully integrated into the NHS primary care offer.

‘When I started attending this group I was at my lowest point. With Rosaria’s easy to follow exercise and cheerful encouragement I am able to motivate myself to take part, considering my limitations. I look forward to doing this group and it motivates me to get out of bed. Thank you.’