This is a transcript of the third episode of our Radio Ombudsman podcast.
Sarah Barclay, Founder of the Medical Mediation Foundation, draws on her many years of experience to help us understand how mediation can be used more effectively in the health service.
Rob Behrens: Good morning, welcome to Radio Ombudsman. It’s Rob Behrens here. A shout-out for our expanding group of listeners, particularly to students at Queen Margaret University in Edinburgh studying conflict resolution, who listen to this blog, and to the Ombudsman and her team at the University of Denver in the United States, who also listens and contributes to collective thinking.
My guest today is Sarah Barclay. Sarah is the founder of the Medical Mediation Foundation, a not-for-profit organisation providing mediation and conflict resolution training to NHS hospitals. She’s the Co-Director of the ‘Evelina Resolution Project’, which provides mediation and conflict management training to staff at the Evelina London Children’s Hospital.
It’s really great to have you here, Sarah. You are an absolute distinguished guest. You were voted ‘NHS Innovator’ in 2014 by the ‘Health Service Journal’ for your work on the Evelina project. You have a Master’s degree in Medical Law and Ethics from King’s College London, and you are a former journalist, author, and award-winning BBC social affairs presenter.
What’s particularly good about the timing of this podcast is that here at the PHSO we’re in the process of a culture change that will embed early resolution and mediation into our skillset for complaints handling. Sarah, I want to talk to you as being one of the most respected practitioners in the small world of health service mediation.
I also have to say that Sarah is someone I’ve known personally for many years, so, as I begin this discussion, I count her as a friend. I want to ask you first of all, Sarah, about your background, which I know something about, but tell us a bit for the listeners about where you were born and brought up.
Sarah Barclay: I spent the first 10 years of my life moving around a lot. I was born in London, and we lived in Hampshire, we lived in Kent, but what I really remember about those first 10 years was a couple of periods of time where I spent living in Denmark. Especially the first time when I was 7 and found myself in a Danish school, with children who were just starting school for the first time, which they do in Denmark – they don’t start until they’re 7 – and not being able to communicate at all, just not speaking a word of the language.
I think I learned it. I can’t really remember, but I remember, after a while, running around the playground, conversing with everybody, but it was an early lesson in what it feels like not to be able to communicate and be surrounded by strangers not speaking the same language. I spent a period of time as an adult living in Barcelona, and the same thing again. It’s a very humbling, valuable experience.
Rob Behrens: Did you end up learning Danish at all?
Sarah Barclay: Apparently, I did. I don’t remember a word of it. It’s a very strange language. A lot of sounds come from the back of your throat. I can remember the odd word now, but the moment I left Denmark I never spoke another word of it again.
Rob Behrens: The ‘British Ombudsman Scheme’ is based on the Danish model, so we should acknowledge that. Your first career was as a journalist. Did you always want to be a journalist?
Sarah Barclay: I did. I think I was one of those lucky people who always had an idea of what they wanted to do. I actually started out as a financial journalist, which, for anybody who knows me, they would find very amusing because maths was not my strongest subject at school. But I ended up working on ‘The Independent’, which was a really great newspaper to work on in those early days.
Then I moved to the BBC to work with Polly Toynbee and her team and the Social Affairs unit, as a social affairs and health reporter, and then later on to ‘Panorama’, where I spent 10 years reporting on social affairs and medical issues
Rob Behrens: Yes. While you were there, you covered a range of very sensitive and difficult subjects. ‘The Story of Child B’, which was about a health authority deciding that it was not going to treat a child’s lapsed leukaemia, but her father decided to fight the health authority through the courts. He won, then lost on appeal, and after that the court lifted an anonymity order it had imposed to protect Child B, to allow her father the opportunity to raise funds for her treatment.
Jaymee Bowen’s story then appeared on the front page of the newspapers, and this resulted in an unknown benefactor paying for Jaymee to have an adult treatment, which wasn’t at the time available to children. How was that?
Sarah Barclay: ‘The Story of Child B’ was, I think, above all, the story which led me to where I am now as a mediator, because, looking back on it, it was very much a story about medical conflict. It was a story about a conflict between Jaymee’s father and her doctors. It was the story of a conflict between the father and the health authorities, and then into the courts.
Fundamentally, this was a story about how far it was appropriate to go in continuing to treat a child for whom the medical teams thought that there was no further chance of a cure, and a father who absolutely refused to give up and wanted to challenge the NHS to provide treatment which he thought could help.
Of course, if we think about some of the recent cases that we’ve seen going through the courts – Charlie Gard, Alfie Evans, who was at Alder Hey – I think what that shows us is that, when parents and doctors disagree, it is very difficult to find a way through that. Parents will very rarely give up hoping for a chance of success.
Making that film about Child B, and when we started making it we had no idea whether it would be shown, because she was protected by an anonymity order, and when it was, her voice, I think, resonated amongst a lot of people. What I remember her saying is, “Never give up until you’re on the last little drop of life.” That stayed with me for many years.
Rob Behrens: What that shows is that there are some situations in medical conflict where adjudication is simply not relevant. You need to do something else.
Sarah Barclay: Yes. Who knows whether mediation would have helped in those circumstances, but actually, to some degree, I think what happened was partly the result of a breakdown in communication between the father and the medical team. The question is, if you can be aware of that and try and deescalate that very early on, you may have a chance of being able to find resolution, but you may not. It may be completely appropriate for the courts to be asked to decide.
Rob Behrens: Yes. You also made a remarkable film for ‘Panorama’ about Diane Pretty, who had motor neurone disease, and took her case for assisted suicide to the European Court of Human Rights. What was that like?
Sarah Barclay: That was one of the most difficult films we’ve ever had to make. We made it in what turned out to be the last six weeks of Diane’s life. When we met her, she was not able to communicate, apart from using one finger on her right hand to tap out words into a voice synthesiser, like the one we all know from Stephen Hawking.
My challenge was trying to ask Diane questions which would bring out why she was feeling that actually for her, at that moment, being alive was no longer what she wanted to be. She wanted to have a choice about when she died. And to bring out some of the complexities, but all my questions had to be phrased in a way which really she could only answer “Yes” and “No” to.
But what she said to me was, “Will you make a film that shows people what it’s like to live in my shoes, and why it might be that I could feel that actually death was better than life?” That was a big challenge. We wanted to respect her wishes, and it was a really challenging, upsetting film to make, because we spent a lot of those six weeks in her house, showing what her life was like. After she lost her case, I think she died a couple of weeks later, but not in the way she would have chosen to die.
Rob Behrens: These are landmark occasions where many people would be satisfied that they’d reached the pinnacle of their career, but you chose to build on it and to transition into your current work. Can you tell us a bit about your thinking, moving from being a journalist to becoming a mediator?
Sarah Barclay: What really struck me in the many hours, days, weeks I spent making stories with families and with patients, with doctors, was that when things go wrong, or when very difficult ethical dilemmas arise, the impact on everybody is enormous.
I began to think. I began to get interested in the ethics, in the medical ethics and medical law which underpinned a lot of those stories, so I started the move away from journalism by doing a Master’s in Medical Law and Ethics at King’s.
Then later I was invited to become a lay member of the Great Ormond Street Clinical Ethics Committee, where we had many cases that we were asked to consider, where doctors were considering whether experimental or innovative treatment was appropriate for a child.
We could see the clinical team wrestling with those very difficult dilemmas about whether it was appropriate to experiment. What were the risks and benefits? We would also sometimes hear from the families about why they wanted to give their child that chance.
I began to think that there might be something more positive and practical that could be done to support everybody when those situations arose, and that’s when I started thinking about mediation.
Rob Behrens: The next question might sound a bit facile but it’s not, in the sense that understanding what mediation is is a core issue. There’s lots of debate in the literature about it, but what do you understand mediation to be?
Sarah Barclay: I think I probably take a much too simplistic approach. I think mediation is about helping people have really difficult conversations about really difficult things that they might not otherwise be able to have. It is a neutral, impartial process. The real strength of that is that it means that the difficult conversations that are happening are supported by somebody who is able to be impartial, not to make judgements, to be able to acknowledge everybody’s feelings.
It’s a voluntary process. I know there’s a discussion at the moment about whether in medical mediation it should be compulsory. I understand that, but I think the value of mediation is in its voluntariness. It should never be a tick-box exercise.
So, yes, I think fundamentally it’s about helping bringing people together and talking about very difficult things that they might not otherwise have been able to do in a more adversarial, formal process.
Rob Behrens: Do you think there are any essential skills for mediators, or is that overcomplicating the issue?
Sarah Barclay: No, I think the absolutely essential skill that you have to have as a mediator is to be a very good listener. Listening, the listening muscle is a muscle I think you have to train up and activate, because it’s very difficult. I know when I was training as a mediator and when we trained a group of clinicians at the Evelina, the one thing that they said was: “We thought we were good communicators and good listeners. We realise that we weren’t, because we’re very good at jumping to judgements”, as I think we all are. It is very hard to empty your head of assumptions and judgements, and just listen.
When you think about some of the territory that we’re working with here… When accidents have happened, clinical errors have been made, the impact that that has on the people who are parties to a mediation – and on the clinicians – the skill that the mediator brings is to be able to support that…very difficult emotions which are coming into the room. This kind of mediation, you have to able to deal with high emotions and not all mediators can.
Rob Behrens: No, and not all investigators can. What you’re saying is that some of the core skills of mediation are relevant to people in the ombudsman world, even if they’re not professional mediators – listening, for example, communication. These are treasured skills that not all of us have in sufficient depth.
Sarah Barclay: I think it helps to remember that underpinning so much of this is what I call the ‘human stuff’. If we allow these things to become too process driven in terms of managing complaints – or perhaps when they get to your office – I think we risk losing some of the opportunity that we have to communicate, to be able to support people in being open and honest, and to be able to acknowledge the pain that they have suffered as a result of what has happened, whether it’s been an honest mistake, or clinical negligence, or an accident happening that couldn’t have been prevented.
Those mediation skills are appropriate not just in the formal process but, I think, to health professionals working on the front line in hospitals. That’s where a lot of our teaching is focused. I like to think of mediation as widely as possible in that respect.
Rob Behrens: That’s helpful. I want to come back to that in terms of thinking about where it fits in the alternate dispute resolution panoply, but for now can you tell us a bit more about your work at the Evelina Children’s Hospital in London?
Sarah Barclay: The Evelina project actually began with a phone call from a consultant when I was on a train, coming back from Hull. She said, “I found your website. I work at the Evelina. We have a very difficult case which I don’t think needs to go to court, and I don’t think it needs to go to an ethics committee, but I wonder if mediation might help.”
As a result of working with that consultant, with that team, and with that family, she said: “We have found this incredibly helpful, having an independent, mutual voice coming in to support us through this difficult case.”
We applied jointly to the Guy's and St. Thomas' Charity to run a pilot project, and that ran for two years, providing mediation and training to a large number of health professionals at the Evelina. For the last three years, it has been funded by the hospital itself, so it’s now becoming more embedded in what the hospital might call ‘business as usual’.
I think it was probably the first project of its kind in an NHS children’s hospital to bring mediation and mediation skills training into the hospital itself. I think, as time goes by, people – the staff there – say to me, “We’ve started to recognise the warning signs of conflict with families earlier than we used to do, and perhaps think about how we’re going to manage them.” So, the mediation skills are just as important as providing a formal mediation process, too.
Rob Behrens: In any example of where new systems or ideas are being introduced, you tend to get people who sometimes oversell what it is they’re bringing to the party. There’s an element of optimism bias among some of the proponents of mediation, but could you give one or two examples of where mediation has been successful in your work at Evelina?
Sarah Barclay: From my experience, I think mediation tends to be successful when there is some clear territory to be mediated. There has to be some “mediatable” grounds in the middle. I have found it to be most successful where there has been communication breakdown between a family and a treating team, where there are decisions about treatment to be made, or decisions about how communication will work between a team and the family. Sometimes also where there are apologies to be made and some thinking out of the box to be done about how a family and a team can work together.
I think the cases which are more challenging – but they’re not the reason for not trying mediation – are the cases in which the medical team is saying: “There is no evidence to suggest that there’s any chance of a cure” and a family who, for many understandable reasons, will not and cannot give up hope and think there is something out there that is worth trying.
Those are more difficult cases, I think. We’ve seen them in the recent Charlie Gard case, in the recent case of Alfie Evans in Alder Hey. It doesn’t mean you shouldn’t try and bring people together to have a conversation, because the value of mediation can sometimes narrow the areas of disagreement, but I think we should be honest about when it doesn’t work, as well as when it does.
Rob Behrens: Thank you. The health service has some particular cultural characteristics which may make mediation particularly difficult. I’m thinking of professional dominance, clinical hegemony, hierarchy, defensiveness because it’s in the public domain. Is it more difficult to mediate in the health service than in other areas?
Sarah Barclay: I haven’t mediated in other areas, so I can’t compare it, but what I think is very acute in the health service is there is still, despite many people’s best efforts, there is still a culture of blame in the NHS. There are still enormous constraints because of resources.
Even I’ve been working in the NHS now in different hospitals for five years, and certainly those constraints feel more acute now than they did when I started. So, when mistakes happen or when communication breaks down, there’s a huge amount of upset and anger amongst both the families and staff.
I think it becomes very challenging, sometimes, to bring them together, because, while a family might want staff to say sorry, staff equally are feeling: “Actually, if we had been better supported, if there had been more resource here, perhaps the mistake wouldn’t have happened in the first place.”
We have to acknowledge that that is very much part of the territory – and the high stakes of that territory when we think that it’s about families who have lost a loved one; a family whose child may have come out of an operation in ways which people didn’t expect; somebody’s died. Those are hugely emotional, difficult areas to mediate.
I think one of the things that strikes me very often is when doctors say, “Emotion is quite frightening. What we do, as health professionals, is we like to fix things. We like to make things better.” The really scary stuff, sometimes, is in the emotion, because we don’t know where that’s taking us, so I think the value of mediating, and training health professionals to have those skills and give them the confidence to engage in the emotions that patients and parents are describing, is very valuable.
Rob Behrens: You’ve called this an ‘emotional war zone’. What’s interesting is that when Scott Morrish came on here he talked to me about the situation where complainants go through trauma, and case handlers at the ombudsman go through trauma for not being able to deal with the trauma. That really seems to point to the same thing.
Sarah Barclay: Yes, and we absolutely have to acknowledge that trauma on both sides. One of the things that sometimes gets lost in cases which become public is the trauma that the professionals feel, too. We have to acknowledge and respect that, and help build confidence.
Yes, I think using mediation skills to equip complaints handlers and staff with the confidence to be able to go into a conversation with an upset, distressed, angry parent who may feel that an investigation has not been thorough enough, has not uncovered the things that they hoped they would uncover, you need to prepare for that conversation. You need to structure it in a way which will allow the parent or the patient to be able to trust you, and to be able to explain what the impact has been and what’s happened to them.
Unless that impact is acknowledged, I think people will find it very difficult to move on. The skill in not only doing the investigation but in communicating the results of the investigation lies in acknowledging and helping the complainant and the patient, the parent to come to terms with what has been found. Of course, some people never will.
Rob Behrens: Sarah, I want to press you a bit about this because there may be a cosiness about some of the ideas of mediation that we should be sceptical about. Can I give you an example? What about a situation in a hospital, which I have seen more than once, where the care plan for a patient has been fabricated by the clinical staff after the patient has died? Are you saying that that is an issue that can be mediated?
Sarah Barclay: It depends what the purpose of the mediation is. I would start by saying it absolutely should not be taking the place of a thorough investigation into what happened, appropriate redress and apology, learning for the clinical staff, an understanding of why the clinical staff might have felt that they had to do that.
I think the value of mediation would be in bringing everybody together to talk about what’s happened, to allow apologies to be made if apologies are appropriate, to allow a family to talk about the impact of what has happened on them, and to see if you can get to a point where people can move on as a result of that. But it’s never an either/or. It’s part of the process.
Rob Behrens: One of the consequences of doing this challenging work is that there’s a certain amount of stress involved in it – not just for the participants but for the mediator. One of the things I found in university life was that mediators in universities had burnout. They could only do it for a certain time. Is that a common feature of the trade?
Sarah Barclay: I think you have to be very careful in how you look after yourself as a mediator. Mediation, unlike counselling, for example, or psychotherapy, which has inbuilt supervision as part of the process, mediators don’t have that. It’s up to us to seek supervision. It’s up to us to debrief with people we trust.
I certainly have to do that when there’s been a particularly difficult case. It’s hard, as it was when I was a journalist. It is hard to walk away from some of the stories that you’ve heard, however professional, however impartial you are when you’re mediating. It’s hard not to take them home with you. You have to find a way of managing that, of putting it behind you, of learning from it and moving on, because otherwise you simply wouldn’t be able to do it.
Rob Behrens: You have many skills, but you’re not an ombudsman. So, you may choose to not answer the next question, but do you think, from everything that you’ve experienced, that mediation skills are useful to ombudsmen as part of the range of skills that they should deploy?
Sarah Barclay: I think the important part of what you said is “part of a range of skills”, because it should never be an either/or. I think, perhaps, the value of incorporating some mediation skills more widely into your work is in the investigatory process. It’s in the way that’s done.
It’s in the way that complainants are engaged with – and actually even using the word ‘complainant’ feels wrong. They’re human beings to whom really tough stuff has happened – and equipping them to have those difficult conversations, on the phone or in person, in communicating the results of the investigations that you have done, in making them feel they’re part of the process. I think it’s a useful skill, but I would never suggest it was used as an alternative to the really thorough investigatory part of your work.
Rob Behrens: Thank you, that’s interesting. When we announced that you were coming on the programme and we asked for questions, we got quite a lot of negative responses – not about you but about mediation being applied to the ombudsman world.
A number of people on Twitter said that, because they’d lost all trust with the NHS and the management of their complaints, they felt that mediation could never apply to them, because there wasn’t integrity amongst the service users and the medics. Is that something that you could recognise?
Sarah Barclay: Yes, absolutely. I understand why people would feel that when there are certainly many patients and parents who I’ve met who felt that they’d been driven to feel that they need to complain because they felt that what had happened, they hadn’t been listened to, because something had happened which needed to be investigated, and learning from that.
When trust has broken down between a patient, between a family member and the team, actually that spreads, and it can result in just feeling that actually you can’t trust anybody out there. Why would you? It feels like a cover-up.
I think the key in starting to re-engage is you have to start from a position of trying to rebuild trust and confidence, and that can be extremely difficult to do. Often, years will have passed for some of the people who are making complaints, which may end up on your desk, Rob. That is years of feeling not listened to, not investigated, not having a fair hearing, and a lot of grieving still for the thing that happened in the first place.
I understand why, perhaps, people might think that mediation is a bit of a secret process. I would say it’s confidential, but I understand why people might think it was secret and should never be used as an alternative to thorough investigation.
Rob Behrens: That’s interesting because my next question was about those people who argue that, because we need to hold public services to account, that the confidential nature of mediation militates against that, and, therefore, should be used quite sparingly.
Sarah Barclay: That’s a really tricky one because actually mediation is not a process which is about holding public bodies to account and public bodies need to be held to account. I think, therefore, the territory or the parameters of the mediation in these cases need to be very clearly agreed between all the parties. I think it’s not a reason for not doing it. It’s a process. It’s a process which can run alongside formal investigations.
I think where it’s helpful in running it alongside is in – again back to the communication with the parties involved – involving them in the investigation, having conversations with them that make them feel that they are being listened to. That is all very much part of, I think, how a complaints process should be handled, and I think it’s not always the case that that happens. The complainants can feel very excluded from that process.
Rob Behrens: Thank you. I could go on all day asking these questions, because you’ve got a very unique perspective and it’s important. But my last question to you is: you’re clearly a pioneer, so how do you see the Medical Mediation Foundation principles developing? Is this a model purely for health service issues, or could it go wider than that?
Sarah Barclay: From my perspective, there’s quite enough to be getting on with in the medical world. That’s where my focus will always be. That’s where the focus, I think, of the foundation will always be.
The two areas – well, three – I think it’s a really interesting time for medical mediation now. We’ve seen the judge in the Charlie Gard case talk about wishing to see more cases mediated. I think that’s a very good thing, but I think we also have to be really rigorous in evaluating when mediation works in those cases, and never to see it as a tick-box exercise and say, “We tried, but it didn’t work.” We need to think really carefully about how mediation will best be used in those cases.
I think the training and embedding of mediation skills into the NHS is very much the focus of where I want to see our work over the next few years, because I see the results on the front line in hospital wards, with staff who are beginning to have conversations differently and feel more confident.
The third thing that I am currently working on is a piece of research which will look at evaluating a formal framework to help health professionals in hospitals recognise and manage conflict as a team. Teams are very diverse in the health profession now. We have to think about how we can help them to work together – and, I think, help them to think about recognising emerging conflict, rather like they recognise the symptoms of a disease and manage it.
It is something that needs to be thought about, recognised, managed proactively, to give people the best possible chance of deescalating quickly, resolving quickly. Those three areas, I think, will keep you busy for a while yet.
Rob Behrens: I’m sure they will. This has been magnificent. Thank you very much. It’s stimulating, insightful, thought-provoking. What I take from this is that mediation is not in a box on its own. It can inform other processes, and we need to be flexible in how we think about it. Secondly, that it has to be used in context, and you have to think very carefully and prepare very carefully, rather than just assume that you can apply mediation techniques to any situation. That’s not going to work.
On behalf of everybody, thank you very much indeed for coming. Thank you to everyone for listening. Subscribe to our SoundCloud channel and follow @PHSOmbudsman on Twitter for updates. There are some big names coming onto this programme in the coming weeks, so watch out for that.
And sign up for our next open meeting which is taking place in central London on 22 May, where we have James Titcombe coming to talk to us, and many other distinguished speakers.
This is Rob Behrens signing off, wishing you good day.