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Nobody's Patient: Improving Care and Experience in Maternity Services Transcript

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Women who become seriously ill in pregnancy; families of babies cared for in a neonatal unit; and women whose babies die in the second trimester often fall between the cracks of NHS services, due to the way services and pathways are set up. They become ‘Nobody’s Patient.’

April's Edge Talk will give participants the opportunity to hear about the Nobody’s Patient project, which was sponsored by the NHS England Maternity Challenge Fund to improve care and experience for families who are typically seldom heard. The talk will describe why the project – part of the #MatExp social movement - was created. It will also detail how families and multidisciplinary staff came together during two pilot workshops at Kingston Hospital NHS Foundation Trust, and at St George's Hospital NHS Foundation Trust to co-produce solutions to improve the care and experience for other families, and for the staff who care for them. Because nobody should feel like they are nobody's patient.

This Edge Talk will be of interest not only to those involved in maternity services, but will also appeal to anyone working in engagement and coproduction, especially with groups who are typically labelled 'seldom heard', or 'hard to reach'.

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Nobody's Patient: Improving Care and Experience in Maternity Services Transcript

  1. 1. EdgeTalk webinar (UKEDGE0704A) Page 1 of 15 Downloaded on: 07 Apr 2017 11:04 AM Hi guys, welcome to The Edge talks. My name is Janet Wildman, please use the chat box to contribute to the discussion, we would really like to hear your opinion about what is going on with maternity services in your area, what is your experience of using it, or families who may have used it. Please also join us by using the Twitter hashtag, #EdgeTalks, and the handle at @Sch4Change and @theEdgeNHS. Please join us either in the session, let us know your discussion about why this is such an important subject to you, and on Twitter. This is me, I'm the chair for today's session, I'm also joined by a few of our colleagues here, Dominic Cushnan and Louis Warner, we have pulled them into the conversation there. I would also like to introduce Paul Woodley, he is handling technical issues, you can contact him directly to deal with any issues you might have. I would like you to introduce you to Leigh Kendall, she brings a personal story to her work, you will hear more about that today. We will also be joined by Catherine MacLennan, and also Gill Phillips, they make a fantastic team and will be our key presenters here on Edge Talks, we will be hearing more on this important subject, Nobody's Patient. Improving care and experience in maternity services. So without further ado, I'm going to hand us to Paul Woodley. Over to you, Paul. PAUL WOODLEY: Good morning everybody, and welcome to this month's Edge Talks. Leigh will be leading the session with Catherine and Gill, so we would like to have a poll to see who has joined us today. If you can click down so we know who is joining us. Leigh, if you would like to start introducing your topic while people are completing the questionnaire? OK, most people who have joined us today are either patients, there are a few others as well. If people could put in a chat where they are from, and then over to you, Leigh. LEIGH KENDALL: Lovely. It is good to see there is an interesting mix there. Moving on to our next slide, as I was saying, we are missing our consultant obstetrician, Florence Wilcock, who is such an important part of MedX. We will be hearing more about Florence when we talk about the workshops. For now it is over to Catherine to tell her story. CATHERINE MACLENNAN: Hi, I'm Catherine, I got involved with the Nobody's Patient experience on the train. Through my experiences I have shared quite a lot of the heartache, and the rough times I have actually had while I have been on my journey.
  2. 2. EdgeTalk webinar (UKEDGE0704A) Page 2 of 15 Downloaded on: 07 Apr 2017 11:04 AM One of the things that I did, I wrote a piece which was for a perinatal mental health talk I was giving a few years back, and Gill got in touch, and said, "Can we take a bit of that and make it into a poem?" I'm going to share that this morning. I know lots of people have heard it before but that it is good to remind us of the things that have gone right. The doctor that gently guided me through every aspect of my care and told me gently there was nothing he could do for my baby. Who came into my room and said, "I'm sorry." The paramedic who took my baby from my hands and said he would make sure our baby was looked after, but he needed to look after me right then. The Healthcare Assistant who tried to painstaking remove all traces of dried blood from me whilst allowing me my dignity. The student midwife who sat with me in the hours I still had hope, and when that hope had gone. The midwife brought our son to us, showing the utmost respect for him and asked. The partner who gave my shoulder a squeeze when I was taken for a scan. The consultant who rang morning and night despite having seen me three times during the day, and coming in on his weekend off to see how I was. The GPs who have been there and fought for me when I could not do it myself. Those who went above and beyond to sit with me during my sadness. The pathologist who arranged for us to bring our baby home and told my husband he knew the pain, as he had been there too, and it was OK for him not to be strong all the time. And I think that the project has really highlighted the things that work, and help people in this really difficult circumstances. And the power of compassion and care can actually really help in the experience of trauma during these times of our lives. So that is my bit for now. I am handing over to Leigh, I think. LEIGH KENDALL: Thank you so much, Catherine. That poem is always so moving. It's succinctly describes everything that is so important in care. It is about kindness and compassion. I would now like to introduce my story. My name is Leigh, Hugo's mummy. Sadly, Hugo is not with me, he died at 35 days old. At 24 weeks, I went to a midwife's appointment and was sent straight to my local hospital. I had a rare disorder that causes multiple organ failure if the baby is not born.
  3. 3. EdgeTalk webinar (UKEDGE0704A) Page 3 of 15 Downloaded on: 07 Apr 2017 11:04 AM My son was born by emergency Caesarean section 2 days later, once I had been sent to another hospital by ambulance. I am for ever grateful to the staff in two hospitals that saved my life. There were so many things in my care that made it much, much worse, the lack of communication. I would like to read something that describes how things start. When I was in intensive care after my baby was born, I was recovering and needed an emergency Caesarean at just 24 weeks pregnant. I felt very alone, scared and vulnerable. No one would take me to see my baby, who was very poorly in the neonatal unit. It felt like nobody cared. Of course the staff cared very much, but I felt between the cracks of the services. I discovered afterwards there were lots of other women like me as well. I made it my mission to improve that for other people, which is why it has been so important to me. Staff cannot make improvements on issues they know nothing about. So it is really important to share that and keep that open dialogue. Now passing over to Gill to talk more about MatExp. GILL PHILLIPS: It has been an amazing thing, really. The story I got from Florence Wilcock saying they had been watching the work I had been doing around dementia care, it was so exciting and it meant that I could expand the work from maternity care. (Inaudible) from NHS England was an incredible (inaudible), I would like to be heard. This was a head of the National maternity review. Florence told me she was the patient experience lead with the London Technical Network, and at the time six of the seven worst results in the country were in London. So they were looking at innovative ways of trying to improve maternity care, and in the light of various very important reports. This was before maternity had such a high profile. So to see the way things have evolved over the last couple of years, with the maternity review, the health and safety collaborative, have been extremely exciting. We would like to think that our work with MatExp, bringing everyone together, has had a very big part in that. Wrong is wrong, even if everyone is doing it. That has been Florence's perspective all the way through. MatExp has been pushing the boundaries. The most important thing has been the skin to skin campaign. Skin to skin with new babies was not the norm, particularly in the theatre cesarean environment, now it is becoming much more so. Right is right even if no one is doing it, skin to skin would be a fantastic example of that. We have one of the extraordinary graphics we have had the privilege of using throughout our workshops. This has always been about working collaboratively, bringing people together as equals regardless of who they are. My key point would be it is all very good to say that, to talk
  4. 4. EdgeTalk webinar (UKEDGE0704A) Page 4 of 15 Downloaded on: 07 Apr 2017 11:04 AM about coproduction, and so many people do. But the key thing is to create the environment where that can actually happen. The Who Shoes boardgame, which some of you might know about, get anybody sitting around the table together. MatExp has taken it to a whole new level, it has or has been fun, always been collaborative, always been inclusive, but we didn't previously have a bake off, some of the wacky stuff you will see if you follow us on Twitter. To actually create the conditions where people aren't equals, you see some extraordinary conversations opening up. I think the fact is not just the use of the service, in this case the women and their families who are important, you have got to actually create the conditions for staff to talk openly. For them to want to be fired up to come to work in the morning. And to make everybody kind of feel equals, that they can all work together cooperatively to make a real difference, and it is very, very action focused. So what is Nobody's Patient? It was very exciting in that we along with everybody else had the chance to have a National Maternity Challenge Fund, this was one year ago, is that all? We had two weeks to put together a collaborative bid and I think at this point, with all the success if you like, the collaboration of MatExp came to the fore and we were able to get cash in, if you like, the genuine collaborations and examples, we had two weeks to put together a bid. We got the idea, she had always been aware of falling between gaps in services, I have been always been aware, we have done some generic scenarios, hopefully with some kind of coverage of all the topics. But there was always the scope to talk about issues in more depth. Identifying women from families falling through gaps in services and the London Strategic Clinical Network I think probably was pivotal to this. Donna (inaudible) and Donald (inaudible), they wrote us a letter which we put together very quickly saying, pretty much go for it. I think it was incredibly significant if people like that wanted to take longer, and if Donald wasn't on the team, finding out what we were doing, and how we were doing it, it would not have happened. The collaboration, the strongest point has been collaborating with women from the outset. Not just Catherine and me but the whole MatExp community, just to name one too, Helen (inaudible) and Hannah Jane (inaudible). Would Catherine and Leigh like to say something about how they are involved? LEIGH KENDALL: Thank you for that about MatExp, it is so good to talk about. I got involved with MatExp after my son Hugo died. I wanted to, I work in (inaudible) ways that we can improve things, after Hugo died I was on Twitter, going through me, I found Gill and (inaudible) and Catherine, who has been (inaudible) important as well. Getting involved, getting my voice out there. But of course it is very difficult to bid, and interview organisations, it is absolutely fantastic, we had the resources to bid, to make that happen. It was
  5. 5. EdgeTalk webinar (UKEDGE0704A) Page 5 of 15 Downloaded on: 07 Apr 2017 11:04 AM absolutely extraordinary. I can't explain how we got the bid. It has been two years since Hugo died, that isn't a long time in NHS terms but it was long for me, how families grow through the additional stress that I did as well. You feel important, you feel listened to, which I don't do often told that it is to (inaudible), getting involved because you are too emotional, very patronising. The main thing is being involved and to collaborate with people and actually make a difference. That would be a token. I will pass over to Catherine. If she would like to contribute as well. CATHERINE MACLENNAN: I got involved with the bid after, as I said, a conversation in on the train with Gill. I was quite angry about the National Maternity Review because there was issues around loss in pregnancy and how that fits into the scheme of things around maternity services. And with second trimester loss we were falling through the gaps, and not fitting in either. I heard that with Gill and the Maternity Review in terms of my experience, I found there was nothing or little in terms of the part around bereavement and pregnancy loss. It made me really angry. For the whole of the train journey back to Birmingham, Gill really listened and asked questions about what my experience has been and how it made me feel and said that she would try and do things so I can have a voice and speak out about my experience and experiences of the families I work with as well. So I got a phone call saying, we have seen the bid, we are just waiting to hear. I got a phone call to say it had been successful. I was so pleased, I surprised myself that I had been listened to, taken seriously and as Leigh said I was not being passed off, it was rather emotional. I needed some time to get over my loss. I will never get over my loss but I move forward with my life with my losses. It has been part of the project, and I go to different hospitals and share my experience. It has been really heartwarming to see health professionals, just listening and really taking in my experience and how it made me feel. Taking that back to their practice. That is my bit and back to Leigh. LEIGH KENDALL: Thank you, now the three key groups about Nobody's Patient. First of all we have the newborn babies, and paediatrics. That is quite key, any outcome, but sadly my son died, but any outcome, those families have so much uncertainty because nothing is normal, and you are thrown into this environment with a newborn baby and also paediatrics, because if the baby can be discharged home and has to go back to hospital, they are not in paediatrics and things like breastfeeding, lots of paediatric departments cannot support that properly. Again, new mums feel often that there is no one there to help them. Second area is when faced with unexpected illness in the postnatal period. Pre-eclampsia or a range of other things for example, haemorrhage and a range of mental illnesses as well. In this day and age we like to think pregnancy is something you sail through, and getting sick in pregnancy, losing the baby in pregnancy is a lonely place to be.
  6. 6. EdgeTalk webinar (UKEDGE0704A) Page 6 of 15 Downloaded on: 07 Apr 2017 11:04 AM Finally, I'll pass over to Catherine because she is going to talk about miscarriage. CATHERINE MACLENNAN: Sorry, I was scrolling through the chapter. Women who miscarry in the second trimester, as I mentioned briefly before, there is no parity across hospitals about the stages of when a woman who is experiencing loss in the second trimester is between gynae and OBs, there is a huge gap. We are falling through because hospitals, some will take people with OBs at 12-14 weeks, other hospitals is 22 weeks. Women can be sat on general ward after just delivering their baby. That is not as common now but it does still happen. And then the other aspect for me was about mental health, the Maternity Mental Health would not take me because I did not have a baby and the other mental health team did not know what to do with me. I thought I was being pushed and pulled from one to the other and nobody would take control of my care. I needed somebody to do that, it was a very vulnerable time. Through sharing that experience, with others, finding they had similar experiences, but sometimes the gynae did not have bereavement care, and the delivery suite now has bereavement services and how they are delivered, I have done a lot of work with that and the language around that, because of what I went through. I have had miscarriages and second trimester losses, I had such an incompetent cervix, therapeutic abortion, all those words hurt. That is where I was coming from in my influx, and those who have gone through similar losses. LEIGH KENDALL: Thank you, that was really powerful and I think we don't realise the power of MatExp and that we can talk between ourselves, even though we felt very alone, to empower ourselves to understand that unfortunately these are not unique circumstances. When I was in care, the staff did not know what to do with me, they looked after me as a patient very well but they did not take into account I was a mum and I needed to be with my baby. When I complained afterwards, I was told well, we have never had a problem before. The patient has a problem with one thing, but also people don't give feedback about things, people can't do anything about it. That is one of the key issues, there is such emotionally and physically draining experiences, things that people don't like to think or talk about. They are very much in the shadows. That is why services, the service is very linear a lot of the time. Catherine will tell you, prenatal and we have any neonatal unit, they look after you, the midwife comes and looks after you or the neonatal unit. And postnatal as well, even though you need maternity services, where do you fit, you fall between the cracks. It is a very lonely place to be. A lot of additional trauma and anxiety onto what is already a very stressful situation. So, Nobody's Patient is a direct quote from another woman, Carolina who felt like she was nobody's patient between staff. We are going to talk to deal about the newbies patient
  7. 7. EdgeTalk webinar (UKEDGE0704A) Page 7 of 15 Downloaded on: 07 Apr 2017 11:04 AM boardgame. GILL PHILLIPS: The next slide, that's it. Social media, it is an incredible source of bringing all sorts of volumes, we use social media and the #MatExp hashtag and Facebook group and interest and all sorts of different channels very strongly but we also have physical events. The top photo, I think it is the first meeting, Leigh. LEIGH KENDALL: Yes, that was the first meeting. GILL PHILLIPS: There were one or two other tertiary hospitals we had already involved, which I had done workshops with. They had nothing to do with Who Shoes and MatExp, but they were the hospital babies were transferred to. St Georges were amazing, to get the two hospitals involved, to get the network involved, and basically to be challenging them to be finding material from everywhere, so for example what were their challenges. They bring together women and staff already, the idea was to have real conversations, to have every voice. You couldn't possibly agree with all of it, people have different views, and how it affects the women and families, as you have heard so powerfully from Leigh and Catherine, and what it feels like to be an obstetrician, whether to transfer that mother before the baby is born or after the baby is born. It is very powerful. The other one to mention is the focus group Catherine hosted with the pinks and blues. It was one of the most powerful, moving things I have been involved in. We only had about six or seven parents who came along, five or six mums, and one of them brought her partner. Those people had never, in many cases, met, far less talk in-depth, to other people who had lost a baby in the middle of pregnancy. We planned to have a three hour session with time to go out and take a walk, we ended up with a four hour, very intense session. With so many scenarios around losing a baby in the second trimester. That is how we tried to crowd source the material. LEIGH KENDALL: Thank you, Gill, sorry, I was just looking at the chat box. St Georges was the hospital where my son was born and died. I am so grateful to them for saving my life, and giving my son the best chance, but there were issues with communication. I felt very scared and alone. To get these professionals from different specialties in a room together was absolutely incredible. During the time of my care and Hugo's care, it felt like these departments were not just different departments in the same hospital, they might as well be on different planets. To get them together in the same room and talk about solutions to these issues, actually listening to me and to my care, and seeing the pennies dropped about what went wrong and what they could do, very easy things they could do.
  8. 8. EdgeTalk webinar (UKEDGE0704A) Page 8 of 15 Downloaded on: 07 Apr 2017 11:04 AM And to get them talking together as well. They are all very busy people, they have their own specialties, incredibly busy jobs. To get them to take time out of their busy days to talk about how to make things better for other families was absolutely extraordinary. I am very proud. I would like to pass over to Catherine to see if she would like to say anything more about the focus group. CATHERINE MACLENNAN: Gill has had quite a lot about the group. From me, I could not have envisioned how powerful the actual focus group would be, the parents coming together and sharing their experience with such ease. They were just so supportive of each other, they gave time to each other to share their experiences. They did not talk over each other. For a group that had never, ever come together, the respect between them was absolutely amazing. So they talked about the good, the bad and the ugly. Each sharing the most difficult times of their lives, and as Gill said, some of them had never even spoken about their experiences with anybody else. They had never been given that time or that place to do that. And it was the first time they had spoken about how traumatic those experiences were. The way Anna, the facilitator, pulled those conversations together and fed back to the group really added to the emotions of the day. And the cards that Sue had brought with her as a starting point, they were just spot-on. I recognised a number of them from my experiences, and that felt really positive, that she had taken my experiences and put them into these cards to help open up discussion around second trimester loss. The group coming together was really, really important. The numbers were small, but it was right. The information that we got from that session, we couldn't have got it from a larger group, we couldn't have got it from a smaller group, there was a great deal of courage shown by the parents in that group, by showing their experiences as well. LEIGH KENDALL: Thank you, Catherine. I'm just going to pass back to Gill to talk about the pilot sessions. GILL PHILLIPS: We have crowd sourced all of this material, the first session was done at (inaudible) Hospital, we have already done a lot of Who Shoes work, areas such as operating theatres, they have been very innovative. We have basically tested the new material. I think it was the previous slide you should be showing here. We tested the new material, we tweaked it afterwards. We were open to asking people to comment, have we got the scenarios right, have we got the poems right? The versions you can see at the moment are the final design versions we have come up with right at the end of the project. So we tended to review the material, keep crowd sourcing a few gaps. The hardest thing, it always is, producing a finished pack of Who Shoes material. People come up with such
  9. 9. EdgeTalk webinar (UKEDGE0704A) Page 9 of 15 Downloaded on: 07 Apr 2017 11:04 AM wonderful things, you think have we got something about cold babies? Colour-coded hats? Family integrated care? Alongside this we were building our toolkit, tips for how to get the most out of the workshop, crowd source, and a book of 10 Best practice case studies. The workshop at St Georges Hospital was looking at how does this work at the highest level of tertiary care? We selected the cards we were going to be talking about accordingly, because you can pick certain messages and put them at the top of the pile, so that although it is random, you are taking the conversation into things around transition and transfer between hospitals, which are obviously critical to that kind of service. That is what I wanted to say about that. LEIGH KENDALL: Thank you, Gill, I just wanted to talk about my own experiences of the workshop, and I will pass over to Catherine in a moment to talk about her experiences. What was extraordinary was the energy and the buzz. We had people from all sorts of experiences, obstetrics, gynae, intensive care, parents, families, all on tables talking about their own experiences. I will never forget the day at St Georges, it was so incredible getting those people together. When I chatted to CQC about why parents were excluded from the maternity surveys and the neonatal surveys, we were told the reason they exclude us is because it would be too sensitive, too difficult for us. There was so much laughter on our table, which included other mothers who had lost their babies. We were able to laugh, to talk positively and constructively with the midwives and the nurses on our tables, way to move things forward and help other families. I remember a consultant on our people who cried when she realised that perhaps she had not been doing something in a way that was most helpful for parents. And that is incredibly powerful, not just for her, but for us as well, to see how much the doctors do care for patients and for families. They want so much to get it right. But we can only get it right if we share the experiences, and we share what goes wrong and what could be better. And how they can make things better. And we can only do that if we aren't included positively and constructively, in a way that is... Yes, it needs to be sensitive, but we are not made of glass. As Who Shoes and Nobody's Patient has shown, there are ways of including us in ways that are productive and make sense. CATHERINE MACLENNAN: Very similar, about the groups. It was very empowering to be with a group of people who wanted to hear our experience, it was really touching. The feedback we got from people in how sharing our experience had really made them think about their role in practice and how they could change that. And also the wider reach, that whilst we were in these rooms, people across the globe were actually getting involved in the conversations that we were having as well. It wasn't just the
  10. 10. EdgeTalk webinar (UKEDGE0704A) Page 10 of 15 Downloaded on: 07 Apr 2017 11:04 AM people in the room, it was wider. People were learning from Twitter, conversations that were going on by sharing pictures of the day, photos of some of the cards, asking, "What do you think about this?" Whilst we were in one room, we were actually in a much bigger room as well. It was really nice to see that feedback, and to see it live, happening while we were there doing the actual session. For me it was so important that people really wanted to understand second trimester loss. Most are very comfortable about what miscarriage was, and stillbirth, but not really understanding that second trimester loss. It was a really great platform to talk to people I work with as well. Back to Leigh. LEIGH KENDALL: There is just one more slide, and we will be passing over to our Twitter and chat monitors. Just passing over to Gill to talk about some of the themes, using our beautiful graphic facilitation as a guide. GILL PHILLIPS: This shown on your slide at the moment have been key themes throughout the whole project. I put it to you, throughout health care. If you are in hospital, and communication is not right, you are not feeling well, there is a reason you are in hospital, people are anxious. This sounds like a very obvious thing to say, but I think the learning has been that health professionals should be able to put themselves in the shoes more of the people they are serving and realise the effect of anxiety, and there are often very small things they can do that are so significant in making people feel better. Handover notes at the bottom, communication, people only having to tell their story once, especially when things are sensitive and they are not feeling well. And language has been incredible, in the MatExp campaign. I really feel it is one area where we are making a huge difference. It is brilliant to see hospitals like Leeds and Colchester, who have been involved in the Who Shoes workshop, getting involved with a box, getting words for a certain period of time, making sure nobody uses the word 'failure', for example. I did actually ask Simon Stephens, chief executive of the NHS, how he would feel if he was told he had 'failed to dialate'. I think sometimes on Twitter, opportunities we get, the way we embolden each other in MatExp is really powerful, but the underlying message is very powerful. Sometimes low risk and high risk pregnancy. If you get told it would be better to see the obstetrician, and someone you meet is smiling, rather than being told your pregnancy is high risk as the opening gambit, helps people physiologically have a better birth. I think MatExp and Who Shoes go hand-in-hand with the Hi My Name Is campaign. The women
  11. 11. EdgeTalk webinar (UKEDGE0704A) Page 11 of 15 Downloaded on: 07 Apr 2017 11:04 AM and families in this case as opposed to healthcare professionals. One of the stories has been, it just came from one workshop, as my mother was told, she was an outlier in healthcare, and someone from Ireland told us apparently that means a cow that has been put out to grass. Thank you for that lovely memorable graphic. Over to the next slide? LEIGH KENDALL: Thank you, Gill. We just going to take a moment to look at the chat box and the Twitter box. Who is our chat monitor? JANET WILDMAN: Yes, that is me. That was good conversation, can you hear me? LEIGH KENDALL: Yes, we can. JANET WILDMAN: There has been a lot of issues raised, this is such a powerful area that we are all learning, we are all growing, we'll accept there is possibly a day to gap there and how can we actually try to look at the gaps in services; more data, more quantitative data, some people are suggesting PDSA, or looking at capturing more data that will cover the gaps and the fragmentation in services. There is something around language and I think the way that you all presented today and talked about the power of language and trying to get the language right is phenomenally important. Again, the issue is that he mentioned around being able to think about creative ways of collaborating and telling stories as a way of moving the issues forward and getting professionals from all sorts of disciplines together, that has resonated with a lot of our audience. Tony has said, Tony Long bond has said this has been a powerful session, one that all EC peace can learn from, well done from everybody who presented and put this session together, it has been fantastic. I want to go over to Twitter to find out from Dom what is happening on Twitter, what was happening in the Twitter conversation? DOMINIC CUSHNAN: Going through the Twitter streams, there is a lot of things around the conversation we're having, people are leaning towards this, it is an important conversation. Giving me some really good comments summarising what has been discussed, always considering the impact of language they used, high risk is very negative, how we can move forward and do that better. JANET WILDMAN: Thank you for that, Dom, any reflections from the presenters, Gill or Leigh or Catherine? LEIGH KENDALL: Nothing for me, should we move forward?
  12. 12. EdgeTalk webinar (UKEDGE0704A) Page 12 of 15 Downloaded on: 07 Apr 2017 11:04 AM OK, thank you, Dom for those comments, very good. OK, talking about neonatal, gynae, anything taking this collaborative approach forward, with the ethos for MatExp, no hierarchy, just people. Anything over that we have Catherine and Anna who is doing graphics, and we have Dell and Florence, and then we have me and Sam are research midwife in the research project and then (inaudible) from the London Institute network. We have Florence, me and Catherine at another (inaudible). What is so important about this is that there is no hierarchy. There is no bosses. We are all leaders of the social movement and that is important with collaborating, anybody can collaborate and take it forward, there is no, as very often impatient (inaudible), there is an attitude where a patient has an agenda, or your (inaudible) on the seat as I discovered quite a lot and ticking the box and you are not given a voice. MatExp and nobody is patient is very good, it is an equal partner, helping pass agendas, for the (inaudible) and equal partners being involved in (inaudible) having a voice, everybody involved in the project and in the workshops as well. It is a real model for other people to take forward, to show that you don't need to be frightened of patients. A lot of the time in health and care, people can be frightened of patients, saying Ono, they will tell us, what will they say? Patients will come to you, it is frightening, sometimes it might be uncomfortable, definitely. But doing will not quite what they should have done, but you have relationships, I can't Catherine and (inaudible) some of my dearest friends. It is fantastic to do things and have collaboration and cooperation and working together and equal. I will pass over to Gill and Catherine. CATHERINE MACLENNAN: Yes, we have all been part of this process, we are not told what to do was say, we have all had equal input into how we run the sessions, what we say at the sessions and for me also, it is wider than that. In the work that they do, I have to give a lot of myself and sometimes I don't have a lot left. The whole MatExp has given me a support network I did not previously have. When I'm struggling, I can talk to other people who understand what it is to have lived through trauma and to be moving forward in their lives, and lean on people when it is overwhelming. But also people who don't judge me, who never made me feel so my gosh, here she goes again. And as Lee said, I have made some friends, a meeting friends who I would not have met any other way. Thank you everybody who has been involved in the MatExp and the broader conversations on Twitter. The support has been amazing so thank you. JANET WILDMAN: We had a wrapup event recently so this webinar is very timely. This is about what we have been doing in the last 10 or 11 months with patients, talking about how the pilot workshop has gone. That from the outcome, the (inaudible) sessions and also about case studies it was a really fantastic event, we had saint Georges and (inaudible) some other charities. It was a great day, people are inspired by what they have learned, taking forward into their own hospitals. There have been given a real example about how things work with sensitive issues, with people
  13. 13. EdgeTalk webinar (UKEDGE0704A) Page 13 of 15 Downloaded on: 07 Apr 2017 11:04 AM who fall between the cracks. There is no such thing as a hard to reach group. We are all here, we just want our voices to be heard, it is about finding ways to get their voices heard in a way that is useful for every party. So for the hospitals and the parents as well. As Catherine has said, it is way of using experiences, not a bit like here she goes again, it is an example of how it can happen in a positive example, that you can take forward. And in just a moment I'm going to pass over to Gill talking about case studies. GILL PHILLIPS: If I could just a massive data to Florence for the event, there was no need for us to do that whatsoever by the constant asking, what difference is the project making? We thought it was more an appreciative enquiry and actually have an event to bring everybody together would be brilliant. That is an example of how it works really. We wanted to show off our (inaudible) which has come back from the printers three days before the event, I can prove that because it has printed pictures of the workshop took place with young parents on 7 March. We are keen to get it up to date, we have direct key studies from the Nobody's Patient project, case studies from the original project and another booklet of 10 key studies from the Nobody's Patient project. All of the materials are available online and free of charge. 20case studies so that any hospital can say we can do that we can do something, transferable knowledge that people can learn with. Hospitals talking to each other in ways they did not previously. Is it that we are influencing things? We are absolutely delighted to have neonatal health and safety collaborative, a brand-new government program that all hospitals have got to get involved in. It is looking at the gaps between maternity and neonatal care. The brand-new Nobody's Patient material has just been launched and is very positive, you can see that the NHS improvement team, it seems to be a wonderful team and really valuing the work that they are doing. I feel very strong collaborative building their and invited us along to the workshops and events. Dom and myself as it happens, we have a very interchangeable team, anybody involved you get the same energy hopefully. LEIGH KENDALL: Is there anything you'd like to add, Catherine about the wrap up in the case studies? CATHERINE MACLENNAN: I think you've both covered it pretty well, thank you. LEIGH KENDALL: I can see we are at time, so I'm sorry if we are taking up anyone's time, but we are near the end. Passing back to Gill to talk about the untimely events that have been in the news. GILL PHILLIPS: We try to keep bang up to date, there is always something happening. At what point do you publish that booklet, at what point do you sign off this presentation? I know I am adding a slide
  14. 14. EdgeTalk webinar (UKEDGE0704A) Page 14 of 15 Downloaded on: 07 Apr 2017 11:04 AM right at the last minute, and sure enough this is on Tuesday. People were tweeting about this wonderful news, it is on the BBC, where parents care for premature babies. One of the areas, if you look back afterwards, there is a poem called Theoretical Mummy. What a terrible start, if you happen to have a premature baby you feel like a theoretical mum. Think about bonding, mental health, and the long-term future of that family. So it is pretty much the opposite of that, getting new parents involved in caring for their baby, however poorly they are. This was featured as big news on the BBC on Tuesday, but we were delighted we had already got the case study from Leeds, exactly the same example in our printed case studies the week before. LEIGH KENDALL: Thank you, Gill. It is absolutely fantastic to see how organisations are taking these things forward and making a difference to families. So there is one final slide here, which is a call to action. Thank you ever so much everybody for listing today. My call to action is that nobody, irrespective of specialty, should ever feel like they are nobody's patient. Now that you have heard Catherine and myself talk about issues with our own care, we have had so many instances of feeling lonely, vulnerable and scared. And of course you may feel lonely, vulnerable and scared at some point of this journey, losing your baby is something nobody wants to feel. But the language was not right, we were not in the right specialty, being catered for in the right place, and because the staff did not know what to do with us. Nobody should ever feel like that, no matter who they are and what specialty they are in. I would like to invite you to think about what you would do if your voice was not heard. And that nobody feels like they are a token in engagement. I hope everybody feels like they can get involved in improving experience for patients. Thank you for listening. Gill, Catherine, is there anything you'd like to say? CATHERINE MACLENNAN: I would like to say thank you to anyone who has joined us here, and I hope you can take something positive from our experiences to make a difference in your own practice. Thank you. GILL PHILLIPS: I would just like to say thank you as well and point out to people again that this goes well beyond maternity services, all of us wanting to experience the best we possibly can from whatever health needs and health services we happen to come across. Let's work with the professionals, let's do true coproduction. LEIGH KENDALL:
  15. 15. EdgeTalk webinar (UKEDGE0704A) Page 15 of 15 Downloaded on: 07 Apr 2017 11:04 AM Thank you so much, and thank you to Gill and to Catherine for being awesome presenters as ever. Thank you for this awesome ride, I really do hope you take some fantastic things away from this, and tell everyone you possibly can. I will pass back over to Janet to talk about next steps and take any questions. JANET WILDMAN: Thank you to Leigh, to Catherine, to Gill, for such a moving session. Dom, can you give a final word on Twitter, what is happening your end? LOUIS WARNER: I think Dom is having a bit of a problem. I will talk about what is happening on Twitter. There has been some great conversation, I think it is interesting to see how the chat has been really intense. I think that shows how passionate people are, they want to get the message across straight away. We have been talking about some of the themes we have discussed today, the use of language and how that is important. I have asked how practitioners use language, how they can think about language more, it might be one patient to them, but for that patient it is their whole life. Really interesting and poignant points today on Twitter. Too many. Yeah. JANET WILDMAN: Thanks for that. I just want to remind everyone our next talk will be on 5 May, led by a gentleman called Chris Godwin, a filmmaker on behavioural health and care. I want to say thank you again for all the presenters, all of the team that have supported behind the scenes, I hope you all have a wonderful weekend. It looks like it will be a funny one, so all the best to you. Thank you and goodbye.

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