Patient Voices, Community Interventions and Social Prescribing
Many yeas ago I had a patient who claimed to have invented a sophisticated technology for which he had never been given recognition or compensation. An engineer and chemist, he had a“nervous breakdown” that ended his career. Or at least that was the “story” he told a psychiatrist. The psychiatrist referred the case to me for a “consultation and follow up.” “This odly dressed delusional gentleman has a fixed delusion about his career and refuses to take medication.” In casual conversation the psychiatrist said to me, “See what you think John, and let me know. Maybe this guy is telling the truth. I hope you can help him even if he refuses medication.”
15 minutes with my new client and I quickly figured out a few things: he was socially isolated, lonely and angry about the alleged injustice he suffered, he had serious financial and housing problems I could fix and he was not mentally well, by any definition.
Long before the new idea of “social prescribing” came into vogue, social work schools taught the curative potential of community and social supports. Unlike social prescribing, community interventions were often not formally recognized as treatment in the way they are now (at least in North America – honourable exceptions made for places such as Cuba and Italy). I was an easy convert to community interventions for health challenges and I began developing a therapeutic relationship, also curative, with my new client who refused to follow up with any more Doctors. My client felt Doctors “don’t listen to anything I say, they just judge me for what I sound like; an old cout” The more we came to know each other and spend time in the community the more he seemed to improve and the more I came to suspect his stories about his inventions were true.
Stick around for the end of this blog and you’ll find out how the story ends. I promise.
On Being a Patient and a health care professional
Living in a world of being both a stroke rehabilitation social worker as well as a stroke rehab patient has been both humbling and a great learning experience (better than anything I learned in social work school, and I say that having been fortunate enough to attend two excellent programs at UBC and U of T).
I had already spent a career listening to the voices of people living with disabilities when I had my stroke in 2021. What I often heard from patients was a desire for belonging and connection. To love and be loved. I recognized this in myself immediately after having my stroke I didn’t want to loose the many connections I had and I knew I would need new ones as well.
As other folks with chronic physical or mental health challenges can probably attest: we often engage in activities that seem like common sense or because we have no other choice, only to discover an “expert” has taken our idea and run with it – giving it a technical name, obtaining grants, doing research, writing articles and appearing on CBC to pontificate about the “new” idea.
Our resourcefulness as people living with disabilities and our expertise are appropriated (a polite, academic term for stolen) by so called experts who then turn around and sell us back our own lived experienced, re-packaged with fancy words and graphs.
Who would have imagined something I’ve been doing my entire life – cycling, now with my partner, Paula, also a social worker – could turn out to be a “treatment”?
Common Sense Wellness and Rehabilitation
That’s what happened to me after a lifetime of taking the bus and riding my bike, mainly to save money but also out of a long standing concern about climate change. I attended a webinar sponsored by my local municipal government on “active transportation”. I thought it sounded like an interesting idea, so I signed up. And it was a good webinar, but it was also strange – a bunch of consultants with fancy lingo talking about cycling and public transit as if it was a brand-new concept. I discovered the internet was full of information on the topic, and my local library even had had a book on active transportation that was big enough to use for my chair yoga class.
Social Work and “Social Interventions”
I’ve spent a career as a social worker connecting my clients to community social supports because I know from experience and from my time in social work school that community support and engagement is good for you. It’s not rocket science and you don’t need a PhD.
It started with helping children with autism attend regular schools: “normal” classrooms and fully integrated recreation programs where they had the same opportunities and experiences as “normal” kids. No surprise – behaviours changed when kids experiencing (severe) autism spent time socializing in a “normal’ environment. I could see the children were happier (after a transition period) and helping others was good for the kids not experiencing autism or neuro-cognitive disorders.
I practiced the same common sense social work on Vancouver’s Downtown Eastside where I worked with folks experiencing homelessness or poor-quality housing. The most obvious problem seemed to be social isolation and marginalization. The solution? Community involvement and inclusion. It was not my idea, many of my clients were already “treating” themselves – engaging in social supports like First United Church, the Carnegie Centre or Co-op Radio and they often reported being happier for it. So I convinced them to take other folks with them and introduce them to what they were doing; perhaps it was reading poetry or producing a radio show.
Other ideas I had that worked out rather well were growing your own veggies, cleaning windows for store owners in Gastown (as an alternative to panhandling) and volunteering at the local drop-in centre. I did the same thing at a Toronto-area hospital working with my clients to build a community garden – and the National Farmers Union were nice enough to make a video about it.
My Stroke
Fast forward a decade or two and I had a stroke following a bike accident. I lost my driver’s license. It was a shock and somewhat scary. But I didn’t think too much about it. The moment I could walk again – with a cane – I started taking the (cheap) bus to my local public (also affordable) gym for my physio, and then I would hang out at the local library (free) and coffee shop. The library had free wifi, books and movies, chair yoga and friendly faces. The coffee shop had cheap coffee and also many friendly folks (some of whom I didn’t know) who asked, “What happened to you?” and then proceeded to tell me about their own friend or family member who survived a stroke “and is doing great”.
I did what I would have told my own clients to do: “Don’t sit at home watching Netflix on the couch no matter how comfortable that might be. Get out and join groups and organizations, and be as active as you can be in your community (or communities). I went “forest bathing” as the Japanese call it – a well established wellness “treatment” – walking and hiking in the forest as a kind of mindfulness as well as physical rehab. I walked on the beach and in the ocean. My physiotherapist recommended balancing on beach logs – on the same beach were they filmed many of the iconic scenes from the famous Tv series The Beachcombers.
What we already do and know is being officially recognized as treatment: social prescribing
Well, what do you know? The kinds of things many of us stroke survivors do just to survive – like volunteering at local food co-operative to access cheaper healthy food or just taking the bus – has a fancy new clinical term in health care: social prescribing and a fantastic website: socialprescribing.ca.
As a trained horticultural therapist I like to think social prescribing – the prescription of social interventions such a March of Dimes support group, or starting your own Stroke Survivor Advocacy Group – started, in North America, with Alice Burlingham a Michigan social worker who repackaged a centuries long tradition of having hospital patients and prisoners work on farms – into an official treatment (horticultural therapy) for soldiers from WW 1 experiencing shell shock (now called Post-Traumatic Stress Disorder).
You already know the downside of being lonely, being stuck in a hospital bed or being stuck in a rural community with no train service or affordable transit. And you know how wonderful it is to garden with other people or help out at your local food bank. We all need to be needed. We all want to be loved. And to love others. And feeling connected and being connected is good for your brain. It helps you heal. That’s the basis of social prescribing
The good news for stroke survivors is that social prescribing will lend a whole new level of credibility to the things we ourselves have been doing from the moment we survived our first or second strokes. I’m already asking Doctors to prescribe recreation therapy, forest bathing, horticultural therapy, and adapted outdoor rec for patients and asking social services, hospitals, and insurance providers to cover the cost associated with these activities. Our brains are damaged and like a muscle that has atrophied, need exercise and stimulation. Social prescribing is like a bounty of nutrition for our recovering brains.
The question I ponder as I pour over my Community Health and Community Organizing textbooks from social work school – books I use with my own students as a Field Instructor – is Do we need the Social Sciences and Health Sciences to turn every day, common sense social “interventions” like social prescribing into a seemingly complex construct? Or can we, the people with lived experience, make the case for ourselves with our own language and ways of communicating? How do we effectively empower ourselves so that we don’t need social workers? I’m hopeful AI will be a partner for us in so many ways – as many of my clients say it already is.
As a social worker I like to think I am a partner with clients on the journey to wellness and empowerment – a better, more equitable and just world. What I really hope to see is that my clients can be there own best social worker. Utopia? Sure. In the meantime, I think social prescribing is a useful tool to help us feel better and live better lives. What do you think? Share your thoughts, send me an email…
What happened with my client? He never took medication and he never really got better – in my opinion of course – I felt he did have a mental illness, although he disagreed with me. But his story checked out and with a better income and some affordable housing he was ok – and more importantly, happy, joining community groups and getting active. Being listened to and having stability and a sense of belonging despite some “odd” behaviours turned out be curative. What a surprise?!
For some good ideas on how we can own our treatment, data and experience check out https://www.savvy.coop/ , a patient-owned co-operative in the US.
John Richmond, BSW, MSW, RSW (ON, BC)
Stroke Survivor/Social Worker – Rehabilitation Medicine