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

EdgeTalk webinar (UKEDGE0704A)
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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.

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.

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

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

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.
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.

Finally, I'll pass over to Catherine because she is going to talk about miscarriage.
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

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.

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.
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

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.
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

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

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?

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.
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

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?
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

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?
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:

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.

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

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