An interview with Dr Helen Findlay, Fighting for Life

Inspired by a family-written case study, The Findlay Report, Fighting For Life highlights the troubling concerns of members of the Findlay family when their elderly parents needed join-up health and social care – Joan had dementia and Jim had Motor Neurone Disease – towards the end of their lives but it wasn’t readily available.

We spoke with Dr Helen Findlay, who co-authored the report, and collaborated closely with Brian on the writing of the script for Fighting for Life, about her experience of working with Brian and the impact that the play continues to have. In 2020, Helen became a Trustee of Pluto Play Productions.

Can you remember your first meeting with Brian and how you came to think The Findlay Report might become a play?

We met at the House of Commons in 2016 at a meeting of the All-Party group on Palliative and End of Life Care - and Brian was there too, with a performance of his play Bounce Back Boy.

And while I was watching, it struck me that my family’s story could possibly be turned into a play too. So, I approached Brian after the meeting was over and everyone was milling around – and, of course, Brian was running helter skelter, trying to talk to people before they left – but I managed to speak to him for about 30 seconds.

I told him about The Findlay Report, which we’d written as a family after my father died, and I sent it to him. He then got in touch with me quite quickly and said he’d be interested in turning it into a play and we went from there.

What were the next steps after he wanted to explore turning The Findlay Report into Fighting for Life?

In the December of 2016 we met in North London – I think we were there for two hours – discussing the project, and we realised we were on the same page about it all.

I have three siblings as well, who were very involved in helping Mum and Dad, so it was agreed that Brian would also meet with them to understand their experience. Brian invited me to watch a couple of performances of his other plays, to get a sense of how it would be presented.

Then in early 2017, Brian started to share drafts of the script with me, and we collaborated via face-to-face meetings and email. Brian really wanted to show my parents as people, rather than diseases or conditions - that their lives were not defined by what happened to them at the end. It presented the situation which my parents faced, rather than it being a health bulletin. 

From our first meeting, it was about nine months until a ‘sharing’ performance of Fighting for Life was held in front of specially invited people to discuss and give feedback on the script and then, following this input, to decide if any additions or changes were needed before the launch performance.

Can you remember how you felt when you first saw a performance of Fighting for Life?

It was a bit weird for me, the first time I saw the play. I went to the ‘sharing’ as well but for the launch performance in 2018, all my siblings and their partners were there too, and I wasn’t sure if I was going to able to say anything at the end.

I remember that I could tell the audience were enjoying watching the play because of their reactions – and because it was a nice and safe environment in the after-show discussion, I could tell they had really got into the performance and into the characters.

I found the post-show discussions after the launch performance and subsequent ones, very useful and sometimes emotional. People were able to raise issues or questions in a different way than they would be able to at a conference, for example, because that isn’t a forum where it’s okay start talking about very deep, personal things. Whereas in the environment created by the performance of the play, it seemed that people felt they had permission to talk.

Are there any reactions to Fighting for Life which you remember in particular?

There have been so many, we’ve performed the play many times, both online and offline – we’ve performed Fighting for Life in London, Cardiff, Glasgow, the Crucible Theatre in Sheffield and community venues too. Recently, we were in Harrogate performing for Harrogate Neighbours.

And there have been many occasions where people say “something similar happened to us” or they recognise the relationships, or they share their own stories with us.

I remember one health professional, after a performance of Fighting for Life, said that having watched the performance and listened to people, she was going to change her approach in how she communicated with people with dementia that she cared for, and that it had challenged her and how she did her job.

Why do you feel the panels at the end of each performance are so important? 

At the end of each performance, there’s an expert panel – and we’ve had various health and social care professionals and palliative care professionals and others from charities who work with older people. And because of my background – I worked for a Trade Union for 11 years, covering health and social care issues – I’m used to getting up and talking about the issues. It’s slightly different when it’s your own experience, but the personal is political.

I think people enjoy the panel afterwards because there’s not really another forum to talk about it – apart from Twitter, which is incredibly useful for making points and connections, but talking to someone face-to-face means getting deeper into a conversation. The panels are important too because it’s a chance to challenge assumptions and preconceptions, and doing it in a positive way, to provoke change. It’s looking at the topic in depth and I think with it being a true story, it’s even more powerful. 

Was there anything you found difficult about the process of creating Fighting for Life?

No, it was all enjoyable because Brian is so easy to work with! He really listens and we got on very well from the off.

And because I had been to see some of his other productions, it was obvious he had a great deal of empathy and compassion in his soul – and the reactions from other people he’s worked with are always so incredibly positive.

I think Brian is a real force for change. Trying to enact change can feel like trying to turn around an oil tanker, but these plays are powerful tools. And if you can just provoke one person to change their attitude, then it’s worth it.

It’s been 16 years since you wrote The Findlay Report, do you feel that there’s been increased recognition within the healthcare sector around the issues you were writing about?

There have been pockets of improvements – but the health service and social care still don’t work together. There’s a lot of conversations at the moment around the need for both services to integrate but that’s been talked about since Year Zero and it hasn’t worked yet.

Mainly because, for me, it’s not a question of how we integrate what already exists, but more about how we need a complete rethink of health and social care and reimagine what it could be. You can’t just bolt social care on to the health service.

What we found with my mum and dad was that different services didn’t talk to each other – so social care managers would try and raise issues with their bosses in local government – and nobody could break through. And on an individual level, home carers and social workers do an incredibly important job, but they’re not valued by those in power and not paid very well. So, we need to rethink the system and enable people to live in their homes for longer, for example, rather than go into care homes which might be unsuitable.

If there’s anyone reading this who has a story about health and social care, but might be feeling nervous about speaking to Brian, what would you say to encourage them?

Firstly, I think you need to decide what you want to share and for what purpose.

Then I would take a look around the Pluto Play Productions website to see what other plays and issues Brian has worked on before – and look at Brian’s biography, because you really get a sense of who he is.

I think you’ve also got to have that fire in your belly – because the purpose of the plays is to highlight issues to generate discussion, and that discussion forms an integral part of every performance.

And if it’s a very personal story, you need to feel certain that you’re comfortable sharing it – and you can gauge that by getting in touch with Brian and he’ll talk you through the whole process.