Interview with Nirjay Mahindru: CEO, InterAct Stroke Support
We caught up with Nirjay Mahindru, CEO of InterAct Stroke Support, on the fantastic work the charity does to help those affected by stroke.
Could you tell us a bit more about your background and how you came to be in your current role?
I was a professional actor for many years before moving into theatre administration. From there, I set up my own theatre company and started both writing and producing plays. When the founder of InterAct, Caroline Smith retired, the charity was looking for someone that had experience within the theatre world to take over, as we only use professional actors to deliver our service. I was initially a little reluctant for two reasons. Firstly, I was only 39 at the time and secondly, I didn’t know much about stroke. However, I was fortunate to meet some fascinating and insightful people very early on, especially Jon Barrick who was then Chief Executive of the Stroke Association, and my knowledge of stroke developed exponentially simply by listening to the experiences of stroke survivors themselves.
Interact Stroke Support provides a brilliant service for stroke patients- could you tell us more about the work you do?
Our core work is delivering a live interactive reading service to stroke survivors in hospitals using professional actors. The primary purpose of this is to alleviate the depression so often associated with stroke, stimulate memory and stimulate language. Many occupational and speech therapists have commented that stroke survivors are far more likely to engage with other hospital activities after they have engaged with InterAct actors. We read nationally at 19 hospitals, two to three times a week at each hospital. The critical element of hospital readings is ensuring that the material we read to an individual is of interest to that particular individual. It’s a waste of everyone’s time if an actor simply sits down and starts reciting Shakespeare to a patient that isn’t interested in Shakespeare. So, the actor has to use their detective skills, via conversation and previous notes from fellow actors that have read on the ward, to determine what genre of material is suitable for each patient. In that way, we try to deliver a very personal service as best we can to each individual in front of us.
Additional to hospital work, we also work in a variety of stroke clubs, working with groups of stroke survivors. Here, additional to short stories, poetry etc, we can also provide songs and quizzes as part of the interaction. Recently, we were developing creative projects with a variety of community-based stroke groups. The idea was that the group itself would develop a creative piece of their choosing, with our actors helping to facilitate their creativity. An example was a group that wanted to do their own version of Desert Island Discs. The actors sourced the relevant music important to each individual participating and interviewed them to find out why each piece of music was important to them. We then developed a CD for each individual participant. Other groups opted to do different things; one even created a radio play. The purpose of these creative projects was to develop confidence particularly for people that may have become socially isolated.
Obviously Covid has meant we have had to adapt. We have therefore created an online version of our interactive reading service, where people can have a professional actor deliver live readings to them in the comfort of their own homes. Entitled InterAct at Home, people can have individual readings with actors for about 30 minutes. We also do group readings which can last up to an hour. We use platforms such as Zoom to deliver this, but actually, one of the most popular formats is the good old-fashioned telephone, and we are very happy to deliver our service using the phone for people that might not be confident using a computer or the latest social media platforms.
People can book InterAct at Home via our website at https://www.interactstrokesupport.org/book-online and two sessions each week are completely free of charge.
We also created our own podcast, RIGHT SIDE OF THE BRAIN, which comes out fortnightly on a Monday. The podcasts are currently audio interviews with people from across the Arts, Health and Cultural sector and can be found via Apple Podcasts, Spotify, our podcast site https://www.buzzsprout.com/1086089 or via our own website at https://www.interactstrokesupport.org/podcast
Every two years we also conduct our very own Short Story Competition, The Ruth Rendell Short Story award, a competition which encourages writers to write a story in any genre under 1000 words. The stories are then judged by our Head Judge Dame Margaret Drabble to determine the winner. This year we will be holding an event at the Orange Tree Theatre in July to announce the winner of our latest competition. The stories are used to update our reading library and can be used by our actors to read to patients at hospitals. Short stories are very popular on the wards because the concentration spans of stroke survivors can be limited during their rehabilitation.
What are the main areas where, as a health and care system, you feel we could support stroke patients better?
I think the best way to answer this question is to repeat what I’m told by stroke survivors themselves. One of the most common feedbacks I hear is how people felt well treated in hospital but upon discharge, felt largely isolated and alone. Once a patient is discharged from a hospital they may receive 6-8 weeks of occupational or speech therapy support. After that however, their next encounter with the health sector is usually at 6 or 12 month GP review. They therefore experience long periods of isolation coming to terms with their condition, additional to friends and family members having to re-orientate their lives to accommodate the stroke survivor. They often feel they lack a voice and have become a number or statistic, and sadly for many, there aren’t family members to provide additional help and support. In many ways, their fears and anxieties at this juncture encapsulates the wider demarcation we have between the NHS and Social Care.
I don’t believe in simply shouting “Spend more money” to solve a particular problem, but I do think we need to have a proper conversation about how better we can integrate a system that is perceived as fragmented from the patients point of view. The so-called Integrated Care Pathway may not be as “integrated” as we thought. I just yawn when I hear people say “The Government should do X, the Government should do Y”. Maybe one of the key problems is that there is a de facto assumption that the answer to health care problems rests with “the Government” and a top-down solution is out there if only “the Government” would listen to the great and the good. Local communities, charities, local business groups, other independent organisations and voluntary associations have fantastic skills sets that could be utilized if we moved beyond the tired old mantras we have all heard for many years. Instead of Health being a political football, I’d love to hear someone say “If I was designing a national health care policy from scratch, fit for the 21st century, what would it look like, what’s the best way to pay for it, and whom would I like participating in delivering it?”
The psychological impact of a stroke cannot be underestimated and if there was one area I wish stroke patients were given more support in, it would be here. I remember the wife of a stroke survivor once saying to me “He’s not the same man I married. After the stroke, he now has a completely different personality”. That really struck me, because with other conditions, such as a heart condition for example, you’re still the same person before and after a major heart operation. So proper psychological support would be great, especially post hospital discharge.
The other point I would make is with regards the precautionary principle adopted by too many doctors in relation to stroke rehabilitation and recovery. Too many stroke survivors have told me how they were told by doctors, that whatever rehabilitation they achieve at six months, will essentially be their overall rehabilitation for the rest of their lives. I’ve encountered so many stroke survivors that improved, then plateaued in their rehab often for a period of years, before suddenly making further improvements. I appreciate doctors can’t promise full and complete recoveries, but I wish they would look again at the expectations they have of stroke survivors in relation to this.
What are your plans for InterAct Stroke Support in the future?
The first thing is to get back into the hospitals we were previously working in pre-Covid. Then, I’d like us to expand to Belfast, so that InterAct becomes a truly United Kingdom charity. After that, I’d like us to expand to Yorkshire and the Southwest. We are making the online service delivery InterAct at Home, a permanent new element of our service, and I’d like as many stroke survivors as possible to be aware of it, so that we can really expand its delivery to anyone, anywhere. I’d like InterAct to continue exploring how we can encourage the creativity of socially isolated people in the community via creative projects.
It’s important we raise our profile. Whenever I tell people I run a charity that takes professional actors into hospitals and reads to stroke patients, the usual response to that is “Wow, what a brilliant idea”. I need to convert that “Wow” into new income streams, especially from the business sector, as at present nearly all of our income is garnered from trusts and foundations.
How do see the service provided by CareCompare as being able to support those who have suffered from stroke?
From what I know of CareCompare, it’s a fantastic service that can tailor the needs of individuals to source an appropriate match from a care provider. It’s a brilliant innovative and much needed idea. By highlighting to both Care providers and to individuals that InterAct Stroke Support exists for example, providing an online service delivery, at no cost to the individual would be beneficial both to us as a charity, and to the individuals themselves.
As CareCompare allows individuals to pinpoint specific requirements they need, a stroke survivor or carer can stress the specific areas of concern they want addressed via the CareCompare site. For example, a stroke survivors’ speech may have been affected by a stroke so they might request a speech therapist to come in three times a week to help improve that. Each stroke is unique to each individual so being able to be specific via the CareCompare website will be of great benefit to so many stroke survivors.
Thank you so much for your time, and we wish you the very best with your exciting plans for InterAct Stroke!