Embedded Files
Michelle Winslow and Sam Smith lead an oral history project at The Sheffield Macmillan Unit for Palliative Care. Together with project volunteers, they have been making oral history recordings with people in the unit since 2007 with funding from Friends of the Northern General Hospital, Sheffield Hospitals Charity and Macmillan Cancer Support. We caught up with Michelle and Sam to find out more about this inspiring project.
Transcript 25/06/2014
How would you describe the work you do at the Macmillan Unit to a lay-audience?
Michelle: We make recordings with people in palliative care, so, patients. They are oral history recordings, so the starting point is: ‘We’ll sit with you for as long as you like, with the recorder, and talk about whatever you want to talk about’. But on the whole, it’s life stories. People tell their life story. We’ll start with: ‘Tell us when and where you were born’ and prompt them through their lives. We create an audio recording that we then give the person a copy of, and we also archive in the unit – so it will be there in decades to come, should family and friends want that recording.
The benefit for us as researchers is that we have this large archive of interviews with people who are in advanced stages of illness (not all, but mostly) that we can then use, as researchers, and they give us signed consent to do that.
Could you tell us what ‘palliative care’ means, for those who might not know?
Michelle: Sure. This isn’t the ‘official definition’ but palliative care is caring for people with life-limiting conditions to improve their quality of life. It supports family as well, and supports the patient emotionally and psychologically. It helps them try to achieve a ‘good death’ – which might sound like an odd term, but it’s an important part of palliative care.
Where did the inspiration for the work come from? Had you done similar projects before?
Michelle: The history of the service, really. I’m an Oral Historian and my PhD was an oral history project, working with Polish migrants in Sheffield. When I finished my PhD in 2001 there was a project called the Hospice History Project, which was Wellcome funded within the University, led by a sociologist called Professor David Clark. He was looking for somebody to help with the archives. That was in 2001, and here we are now! The Hospice History Project was interviewing professionals – including anybody involved in the development of Hospice services, from the movers and shakers like Cicely Saunders to the porters and the kitchen workers. It was a whole oral history of the movement, which we produced a book for called A Bit of Heaven for the Few? An oral history of the modern hospice movement in the United Kingdom.
During that time, around 2003, we wanted to take the project further and thought it would be good to try and interview patients. We didn’t have any funding for that but with a bit of in-house support and a recorder, I set up a couple of projects in St Luke’s Hospice (Sheffield) and St Benedict’s Hospice in Sunderland , who were keen to be involved. We managed to interview 10 patients in both, and it was as research, actually – I was thinking of it as a research tool. But a wife of one of the patients, a man who had Motor Neurone Disease, just as a passing comment one day said: ‘You should be doing this as a service’ – and we realised that maybe we should! The value was in the voice recording – having the voice recording of her dying husband. So from 2003 I was on a quest for funding. I got several knockbacks, but in 2007 the League of Friends at the Northern General gave me a small amount to do a pilot, and then Sheffield Hospitals Charity started funding us in April 2007 and we’re still funded by them now.
Sam, would you like to say how you got involved?
Sam: Sure. I was working in the Education Department for Sheffield Galleries and Michelle came and did a couple of Oral History Society Training Days which I went along to. At the time I was creating podcasts with school pupils and interviewing front-of-house staff and curators about the paintings in the Grave’s Art Gallery. I was interested in using audio as a medium because I’m a musician, so I’m quite passionate about audio and bringing both disciplines together was really interesting to me. I started as a volunteer in about 2009 at the unit with Michelle. I started by summarising quite a few interviews to get a feel for it, and now I work as an Oral History Coordinator there. I’ve been fortunate enough to conduct quite a few interviews and I’ve found it a really rewarding experience. I guess, working in a gallery situation, there was a lot of funding coming in through educational projects which had to be spent quite quickly, and it feels nice to work in an area where I can see the difference immediately after doing the interview a lot of the time. It just feels very worthwhile.
Michelle: Sheffield Hospitals Charity started funding Sam as well after he’d been with us for about a year and they provide us with funding for Karen Hitchlock, our photographer. She lives in Salisbury, so we’re immensely grateful to her. Since 2008, she has travelled all the way up here to spend a couple of days a fortnight with us producing fabulous photographs with interviewees who want them.
Going back to what you were saying about struggling to get funding, do you think your eventual success was part of a bigger change to involve patients?
Michelle: To be honest, I think part of it was that I was inexperienced at writing funding bids. You learn from every knock-back, and it’s painful, but you do. I focussed every grant in a different way to try to get funding. Also I think I was trying too hard to develop oral history as a research project with the service on the side. In fact, it needs to be the other way round. The value in the project is patient benefit, and the benefit for families. So when we focussed it on that, with the research as a bonus, we had more success. When I got the League of Friends initial funding which kicked it all off, the presentation I did for them was on the patient benefit and the value of voices. So it has been a harsh learning curve, but we got there.
The value in the project is patient benefit, and the benefit for families.”
Tell us about the volunteers who work with you on the oral history project.
Sam: We’ve got approximately 10 volunteers who come in regularly. They’re a very wide range of people, from someone who started when she was 18 to a chap who’s in his eighties. They all bring very different skills to the team. Some people are very good at the interviewing and approaching patients – a lot of the people we take on have already worked there as volunteers so they already have those skills of working with patients. We also have quite a few volunteers who come from an academic background – we’ve got Doctors, medical students, all sorts of people working as part of the volunteer team. So it’s a really varied and well skilled team, and we try to make sure that each volunteer can progress in the way they want to, and use the skills they want to improve. We have some who are very good at transcribing and summarising interviews, and then we have some who are very good with people and they’re very good at interviewing. For all the volunteers, we run a training day when they begin. They get trained in skills – not only in oral history and recording interviews – but also within a sensitive environment like palliative care.
The training, and lots of ongoing support, is very important.”
Michelle: That training is really important, because people might volunteer not knowing exactly what’s involved. They know that it’s going to be about sitting and talking with people who are in palliative care and very ill, but there’s so much more involved. You’ve got to know how to do that interview to the best of your ability because this might be the one and only chance you get to record that person’s voice. It’s pressure! So we need to make sure they know how to carry out an interview properly, how to encourage the person to speak, how to keep themselves off the recording, to make a good quality recording – so it’s quite complex really. The training involves all the ethical issues around not just oral history recording, but also working with people who are at the end of life and are very ill.
The other issue is that it’s not therapy. We have to state right at the start that this is history, it’s a history project and its aim is to tell a story – it’s not a counselling opportunity. If the Healthcare Professionals saw boundaries being overstepped we would be stopped, because our value is in that ‘activity’ status, although the Healthcare Professionals do acknowledge that there is a cathartic role for this. So the training, and lots of ongoing support, is very important.
What do you find most challenging about the work, and why?
Michelle: Good question. Sam what do you think?
It’s very life affirming, for the interviewer, as well as the interviewee.
Sam: For me, it’s getting to know interviewees, especially when you build a friendship with them. They’re not there for much longer, and that can be quite hard, especially when it’s with younger people. We don’t usually work with very young people – it’s generally 40s upwards – but when it is somebody in their 40s, that really can be quite hard.
Michelle: The emotional angle of it is hard. I interviewed a lad who was 27. He wanted to record his voice and it was days before he died. I think when you’re actually doing the recording of somebody in that situation though, I’m more concerned about getting the interview right. I think it’s afterwards when you listen back to it, it can be a bit emotional, and that’s why volunteers need a lot of support as well. A lot of the interviews are very uplifting though, don’t you think?
Sam: Definitely. People generally will talk about the happy things in their life and it’s very life affirming, for the interviewer, as well as the interviewee. It’s a very positive thing, but I think the challenge is that it’s a two-sided coin. It’s both uplifting and it can be quite upsetting. It’s very nice to be able to give somebody the opportunity to be able to reflect back and to talk about whatever they want to talk about, to a third party who isn’t direct friends or family. So it is a big positive as well.
We get so much feedback from family about how valuable it is.”
Michelle: The majority of people don’t really want to talk about their illness. It’s their chance to talk without a medical agenda, to somebody who is really interested, we sit and listen and show that we’re interested – it’s a big bonus.
Probably the biggest challenge for me is just keeping us going. We do have a lot of support from Sheffield Hospitals Charity and they recently called us a ‘flagship project’, which we were very pleased with! I also spoke at the NHS Charities Conference last week, but there’s always that worry for the future, because we know this is a very valued project. The patients like it as a chance to put their identity down and to tell their stories. Even just to have time out of the hospital routine – they might be bored, then we come along! We know it’s valuable for patients, but it’s also about family. We get so much feedback from family about how valuable it is, so we want to be able to continue into the future, work more with family, and to make sure that our archive is kept secure for the future.
Do you ever keep in touch with the families after their relative has died? Do they come back and tell you that it’s been important to them?
Sam: Sometimes, when it’s appropriate. Sometimes the audio from people’s recordings will be used at their funeral, and occasionally we will go along to the funeral as well if we’ve built that bond with the family or the interviewee. We get some nice cards and emails further down the line often from families, saying how much they appreciated it. There’s an interview I did a year or so ago, with a woman who was very keen that it was transcribed. She did talk about her illness in quite a lot of detail, and she talked about the process of finding out she had cancer. She was very keen for it to be used as a tool for medical students, or for anybody else suffering from cancer as someone’s own experience of it. I’ve been in touch with her family about how it could be used in the future. So it does continue sometimes in that way.
Has it been used in medical education yet or do you have any future plans to do so?
[pull_quote align=”left”]”The reach is extending, but keeping all these services going is the challenge.”[/pull_quote]
Michelle: We hope to and we have talked to people about this. Macmillan Cancer Support gave us a grant last year to conduct 12 month’s research with people who had taken part in interviews and family who had received interviews. The reason they gave us the money is because Macmillan also fund me to extend what we do in Sheffield to five other centres, so the Sheffield model has been spread elsewhere. There are now oral history services in the Macmillan Unit in Antrim, in a community project in Manchester, a Boots-Macmillan partnership in Nottingham, the Black Health initiative in Leeds and St Luke’s hospice in Cheshire. St Luke’s in Cheshire have a Day Centre, where people who are less-advanced in their illness than in-patients can come in for treatment, complimentary therapies, oral history sessions etc. and they might have more stamina and their voices aren’t affected by illness, so it works very well in that environment. St Luke’s in Sheffield also have a Day Centre, and they began an oral history service in 2012. Clare Williams runs their service, supervised by myself. So the reach is extending, but keeping all these services going is the challenge.
Sam: Making sure it’s done to the best practice model as well, that’s important.
Michelle: Absolutely, it’s important to stress that. It’s got to be top quality.
We’ve already covered some of this, but is there anything else you’d like to add about the highlights of your work, what you enjoy most?
Michelle: It sounds corny, but the challenge of it! It’s taken a long time to become accepted, not in the Macmillan Unit because they’ve been brilliant from the start – people like Bill Noble and Alison Reitz gave us that acceptance and realised the benefits from the beginning. But getting what we do to be accepted more broadly has taken a lot of work over the years and that’s really rewarding, that people now see us as an important complement to palliative care. We get so many enquiries all the time about how to start it in other hospices, hospitals etc. and that’s something we need to work on getting funding for and we are doing so all the time. It would be great if it was under the umbrella of a national charity but at the moment people have to fund themselves locally. Edgecombe Hospice in St Austell is doing it – they’ve found their own funding so I’m going to go down and train them. So gradually it is spreading – people see the value.
Sam: It’s very rewarding. No day is the same, every interview is different, it’s everybody’s unique stories. Getting positive feedback, from interviewees, friends, families, and also from the interviewees, the volunteers. It’s a positive experience and it’s really nice to be a part of that.
Michelle: In future we do want to get more involved in medical education. We do work with medical students sometimes and one of our partners is the Cavendish Cancer Centre in Sheffield – they have medical students on placement with them. Philippa Hughes who was part of our team until her recent retirement, diverts medical students to come and spend an afternoon with us and learn about oral history. They’re always really positive about it. We do think there’s a role in medical education for seeing the person beyond the patient. There’s a value in the communication skills that you can gain from asking someone about their wider life.
Sam: It can be really cathartic for the patient to just recollect sometimes, and quite often at the end of the interview they’ll say ‘I didn’t realise I’d remember all this stuff!’ and they’re generally very appreciative of having that chance. It’s really worthwhile in itself, even if there wasn’t a recording at the end of it, just the interview process can be very rewarding.
Michelle: So we want to continue and grow!
We’ve touched on this already, but the work that you do with the photographer and Sam, your interest in audio – do you think using different mediums helps to tell a story more effectively?
Sam: Definitely, yes. I think it’s brilliant that we have the photographer, Karen Hitchlock, to work alongside us. It’s not always the case that someone will want a photograph and an interview, but quite often they complement each other really well. It’s really good just to have another creative outlet for people.
[pull_quote align=”left”]”It goes back to the woman right at the beginning in Sunderland, who said ‘we’ve got photos, but we don’t have voices’ – that’s what guides us.”[/pull_quote]
Michelle: We both work with the interviewee on the representation of themselves. Karen will work with them to make sure they’re happy with what’s produced, so she will ask if they want any photoshopping doing and some do, some don’t. We do the same – so they get a copy of the CD straight after to listen to and if there’s anything they want to remove or to add, then they can do that.
Sam: We will make edits. It’s key that it’s audio rather than video. Video brings a whole new set of skills – lighting etc. it’s much more complicated and actually, what has come out of our research over and over again is the power of the voice. Especially to family and friends, to have that voice recording.
Michelle: It goes back to the woman right at the beginning in Sunderland, who said ‘we’ve got photos, but we don’t have voices’ – that’s what guides us. Macmillan Cancer Support funded us because one of their user representatives, Roberta Lovick, sits on, the Macmillan Palliative Care Collaborative, she lost her daughter a few years earlier and she was very persuasive in saying how important it is, voices are key. Video isn’t always what people want either.
Sam: We use industry standard digital recorders, lapel mics which are quite subtle – it all means it’s very good quality. We’re aiming at BBC Radio 4 standard!
Tell us more about how you see the project progressing and growing over the next few years.
[pull_quote align=”right”]”We would be happy for scholarly research on the archive to take place, they all have consent for research access and it would be nice to see them used in that way.”[/pull_quote]
Michelle: Our ideal would be to be able to work in the wider hospital – so anywhere in Sheffield Teaching Hospitals. We’re also working on funding bids to work nationally. Within the unit though, it’s just to generate more interviews, maybe work in the community, and to give our volunteers a really good experience. One of the big problems with the service as a volunteer is that we can’t guarantee interviews – so there might be three one week, none for a month. It’s just the way it is. To keep them on board during that time and make them feel valued, we need to put a lot of work into that, to strengthen that experience. We have some fabulous volunteers who don’t demand much of us and seem happy to stay with us, which is great. So to develop within ourselves, strengthen what we do, but also to spread would be fantastic.
Sam: I just hope that it continues to grow really. In terms of oral history as a discipline, it became popular in the 60s and 70s but it’s starting to be seen in new ways. In the new digital world, we need to look at how oral history can stay relevant and inform new digital practice, I think it’s a really interesting area. We’re thinking about how we can represent ourselves online but that obviously has a lot of ethical considerations. In the archive we have a lot of rich stories and social history. We have to be very sensitive about how that information is shared, if at all, but it would be nice to be able to share more of those stories. For instance, people working in factories in Sheffield, working in the steel industry, the Sheffield blitz –How do we unlock that potential in an ethical way?
Michelle: The important thing for the Medical Humanities audience is that our archive has got permission for researchers to access the archive. We would be happy for scholarly research on the archive to take place, they all have consent for research access and it would be nice to see them used in that way.
[message_box icon=”link”]FIND OUT MORE:
Oral History in Palliative Care
Sheffield Hospitals Charity
Macmillan
The Oral History Society
[/message_box]
[message_box icon=”envelope”]CONTACT US:
If you are interested in finding out more about oral history in palliative care please contact us…
Dr Michelle Winslow (Macmillan Oral History Lead) – m.winslow@sheffield.ac.uk
Dr Sam Smith (Oral History Project Coordinator) – s.r.smith@sheffield.ac.uk
[/message_box]
Report abuse