Maternity Experience

Baby Loss

Keeping the difficult conversations going in the pandemic

We recently ran a virtual Whose Shoes? event around baby loss, in conjunction with Gloucestershire maternity team and Sands bereavement charity. It was originally planned as the second of a 2-part event to use Whose Shoes to test out the ‘National Bereavement Care Pathway’ (NBCP) and identify any gaps.

‘Event 1’ went ahead on 6 March 2020, in Colchester …

The Colchester event was extremely powerful, with a lot of buzz in the room, hugs, good support and some powerful outcomes.
That sadly feels like a different world now, doesn’t it?

Anna Geyer, Director of New Possibilities, made this film of the event:

‘Event 2’ in Gloucestershire was meant to follow a couple of weeks later, but we all know what happened in the meantime. Covid struck and it took us 10 months to work our way through how to run an event of this importance and this sensitivity online.

I will fast forward and bypass how we developed #VirtualWhoseShoes, and all the twists and turns along the way …

Suffice to say that it was thanks to the dedication and perseverance of everybody that we managed to make the event happen. Dawn Morrall, Assistant Director of Midwifery & Nursing and the Clinical Improvement Lead of the South West Clinical Network, checked out the emerging virtual experience, and insisted that it should remain as a Whose Shoes event.

Dawn is one of the people who really ‘gets’ Whose Shoes. Dawn also has a great track record of following up on the quality improvement actions in order to get the most from the events … so we love working with the team in Gloucestershire!

I am hoping Dawn will write a case study about the outcomes from our previous events – and from this one in due course!

Online sessions take a huge amount of preparation. We had a lot of supporters, both in the room and following us on Twitter. #FabObs Flo Wilcock, consultant obstetrician, and Marc Harder had been the people who originally initiated the events:

Despite detailed preparation over many months, we didn’t really know how many people to expect, or the mix of people. Healthcare professionals are obviously so busy at the moment, with the pressures on the NHS due to COVID; people are feeling isolated during lockdown and missing the normal support available from family and friends. They are also ‘Zoomed out’, as the pandemic drags on.

It is hard for any new parents / parents-to-be at the moment, let alone people experiencing bereavement, so it was wonderful that Kerri and many others were keen to join. THANK YOU!

I was amazed. We had about 60 people on the call. It was wonderful and very moving to see so many bereaved parents joining us, alongside healthcare professionals, chaplains, people from SANDS, volunteers, medical photographers, a GP, a funeral director, and many more…

We started off with a gentle activity – colouring! It helps people learn Zoom skills that we then use later in the session to annotate certain screens.
But it also feels relaxed, encourages people to turn on their mics and speak, adds a bit of colour and creativity and helps set the right tone for the session.

Coproduction in action – colouring the Welcome screen!

Clare Worgan from Sands (stepping in for Marc Harder, who has championed this work – get well soon, Marc!) gave a wonderful introduction about the National Bereavement Care Pathway, sharing many links and resources, including NBCP e-learning modules. A bereaved mum herself, Clare is passionate about bereavement care. Her authenticity and keenness to help others shone through.

And then a very moving introduction from Deborah Lee, the Chief Executive. Again Deb spoke from the heart, welcoming everyone to the session but also embodying our #NoHierarchyJustPeople mantra by sharing her lived experience story of baby loss.

It was wonderful that she was able to prioritise sharing this vulnerability and helping others, alongside juggling vital meetings to run the hospital!
We all really appreciated it and it set the context for the event perfectly.
Deb has generously given us permission to share her talk, as appropriate, at any future sessions too.

It was very moving to hear Deb talk about her experience of losing two babies before she went on to have healthy children, now teenagers. All birth stories are important. Hearing Deb remembering so clearly the things that made her experience better or worse, just as vibrantly as a mum talking about a very recent birth experience, brings home just how important things such as language, compassion, ‘personalise rather than medicalise’, and the other key themes of our #MatExp work really are.

Whose Shoes is constantly evolving. It is all crowdsourced by real people and their experiences.

Would you want to hear a group of student medics standing at the end of your bed, referring to you as ‘an interesting case’, as you come to terms with the loss of your child?

Would you want to receive a stark letter telling you not to get pregnant again until you come into the hospital to discuss your case … especially if you are already pregnant?

It is fantastic that we have been able to suggest practical solutions, such as the example set by Leigh Kendall, working with Kingston Hospital and St George’s, where sadly her baby son Hugo lived and died, to write more empathetic letters to bereaved parents. Please check out #HugosLegacy.

You can read the other ‘Nobody’s patient’ case studies here: http://www.londonscn.nhs.uk/publication/maternity-co-designed-case-studies-nobodys-patient/

Leigh inspired the work we did around neonatal care, one of the three key themes of #NobodysPatient.

Here is Leigh’s very moving blog, reflecting on our #NobodysPatient workshop at St George’s hospital:

Catherine MacLennan, another bereaved mum, was similarly the catalyst for our innovative work around second trimester loss, which is sadly an area of care that is missed out from many ‘pathways’.

I am always in awe of how many bereaved parents use their grief to create something so positive.

We had the privilege of welcoming about 15 passionate bereaved parents/ couples in Gloucestershire, reaching out to help others. Many of them spoke about special people who had helped them along the way – “life savers” is a word frequently used. It reminded me of Catherine’s ‘special people’ poem.


Catherine’s ‘Special People poem’ reaching paramedics at London Ambulance Service

Something that I found particularly moving in our Gloucestershire event, was a mother talking about how, when her baby was sadly stillborn, she had made small matching dolls, one to place inside the child’s coffin and one to hang on the Christmas tree as a symbol of hope and for any subsequent children to enjoy and get to know and love their sibling.

We had some fantastic conversations around how best to help people remember their babies and how this might change according to the stage of pregnancy at which the loss occurred.

I have been able to follow this up, as part of my own personal pledge, by linking wonderful peer support people doing great work in this area.

Gill Phillips linking Lauraine, founder of ‘Shine’ and Leanne , founder of ‘By Your Side’.

Watch this space for further links between Lauraine Cheesman (Shine, Gloucs) and Leanne Howlett (By Your Side, Warwickshire)!
I really love making these links!

There were so many thought-provoking conversations, sparking the ‘lemon lightbulbs’ that stay with people and change practice.

Would you want the doctor’s comment on your sicknote to simply say ‘Depression’ when you have just lost your child, without consulting you?

How would you feel having to handle this when you talk to your employer, sometimes without maternity leave if your pregnancy ends before 24 weeks?

These are just a small sample of the situations people are regularly facing.

Conversely, we heard how staff are generally extremely compassionate, and what a difference this can make, including giving people the courage to get pregnant again and try for ‘that happy ending’.

As always, we used a variety of scenarios and poems to generate the conversations to explore people’s experiences and how services and support could be improved. Bereavement midwife, Nikki Dobson proved to be a superstar. She and her colleagues had put in so much time to do a gap analysis, identifying areas where feedback suggested improvements could be made.

We wanted to get the most out of the opportunity afforded by bringing all these wonderful people from different perspectives together. The team had identified key themes and we selected the most relevant Whose Shoes scenarios accordingly, including:

• Some areas in fetal loss / medicine identified as needing improvement
• Care after discharge
• Delivery suite gap analysis
• Antenatal screening – support for families in future pregnancies
• Ultrasound
• GPs
• Supporting dads and partners

Nikki writes wonderful poems and she generously read two of them live during our session. We have always used poems as a way of connecting with people differently in our WhoseShoes sessions.


As always, Anna’s images were superb – and all the more so, being able to capture the conversations live during the session, just as we do ‘in the room’. Sometimes we have the opportunity of a visual learning synthesis too, but each event is different.

You can read Anna’s reflections here: https://www.linkedin.com/pulse/hearing-voices-bereaved-families-anna-geyer/

It is totally draining facilitating these online sessions but incredibly rewarding. The chat in the Zoom ‘chat room’ was phenomenal – full of wonderful insights, comments and useful links. The atmosphere was warm and supportive. We were able to ‘save’ the chat in all its richness, as another output from the session to feed into the continuing quality improvement journey.

The outcomes are extraordinary and just as powerful as any other events that we run.

And, of course, for all events the most important outcomes happen later – people following through and implementing their pledges, connecting, building the momentum for positive change.

I collated as many of the pledges and specific improvement ideas from the session as I could. SO many. This does not mean that the bereavement care in Gloucestershire is poor. On the contrary, it means they are open to genuine coproduction, listening and finding out how they can make their service even better.

The praise – and indeed love – for Nikki, Dawn, the medical photographers, fetal medicine staff and many others was incredibly strong . I was moved by everyone’s determination to work together and support each other.

There seems to be a lot of interest in Whose Shoes around how we can better support parents and families suffering baby loss, building further on the various maternity projects we have done, which Colchester, Gloucestershire and about 70 other NHS trusts have used so powerfully in quality improvements.

Next stop, Lincolnshire? A few of their team joined the Gloucestershire session, which is always the best way to learn about
Whose Shoes and build the networks. We’ve done some great work with Lincs before!

The energy is growing

Since the Gloucestershire event, I have had several extraordinary opportunities to join conversations, hear different perspectives and ensure that our Whose Shoes material remains topical, authentic and able to spark the understanding that is needed.

I was privileged to join a very powerful and informative Zoom session, led by paula abramson Alex Mancini-Smith and Nadia Leake .

Bereavement Training International – Bereavement counsellor training for groups at their place of employment

Wonderful staff from the South-West neonatal teams came together to learn more about baby loss and its impact, and Nadia courageously shared her lived experience story, helping people understand the special grief and complexity of losing one or more babies in multiple pregnancy.
I recommend this training highly to all involved in perinatal care.

I also joined a webinar hosted by Kathy Fray in New Zealand, with guest speaker Joann O’Leary talking with huge insight about pregnancy after loss, another complex ‘taboo’ topic which is not discussed enough.

I am being asked about some of the ‘end of life care’ / palliative care work we have done in other areas – eg with London Ambulance Service. I am having some interesting conversations with People from NHS England / Improvement at the moment about how all of this work could be better supported.

I am currently supporting a wonderful doctor, Nikki Crowley, to implement Family Integrated Care in a London hospital; the #NobodysPatient resources will be central to our collaboration. Networking is proving super important here, as some wonderful people come together to help.

And … latest news … we are currently looking at innovative ways to help people follow up Whose Shoes pledges, if things get ‘stuck’ in any way, using #LiberatingStructures. With thanks to Lyse Edwards. Contact me @WhoseShoes if you want to know more.

So, lots happening. But it is only be happening because PEOPLE are stepping forward to make a difference, which is hugely rewatding.

I will leave you with a fantastic quote from Nadia Peake, the bereaved mum of twin baby Raif, who stole the show at the South West Neonatal event.

“The situation is bad.
The experience doesn’t have to be”

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Episode 38. A New Year. Ethics. Storytelling. Networks …

I don’t write blogs very often these days but sometimes, with just too many thoughts going round in my head, it is good to get it all down on paper. Or on a screen.

So please forgive/enjoy this stream of consciousness …

I have been an avid follower of Florence Wilcox’s fabulous podcast series, ‘The Obs Pod’. It is a year now since #FabObs Flo, my #MatExp partner in crime, first told me about the idea, having been inspired by meeting Natalie Silverman @fertilitypoddy at a conference, and I have been privileged to have pre-hears of the weekly editions.

Each one resonates with me in a different way. It might be my own birth experiences (yes, they stay with you for all those years) and now a proud Granny, or hearing Flo talk about her perspective on topics we have addressed through our #MatExp Whose Shoes work. The podcasts always give me deeper understanding of Flo’s thinking and what drives her in her mission to listen, learn and blend all the nuances of lived experience into her medical training and experiences as a doctor.

Anyway, the current episode ‘Ethics’ about the interface between medicine and what has traditionally been referred to as ‘fetal anomalies’ – a baby! – brought a flood of associations, memories and emotions. In particular, I thought of the wonderful network of people I have come to know and love over the last couple of decades. I felt proud that we have been able to contribute to a more human approach, with better information and choice for families from the point at which they are told that their baby has a higher chance of having Down syndrome; and then quality of life and acceptance and joy for growing families. This #TheObsPod episode brings together so many things for me.

Mel Smith and Grapevine are friends I have known for many years. Indeed, I attended their 25 year celebration (thankfully before the pandemic curtailed such activities).

Mel wrote ‘Imagine’, a fabulous poem about her relationship with her son Rishard as a very powerful contribution to our Whose Shoes event with the Coventry & Warwickshire maternity team in 2018. Hearing Mel read it here at the end of Flo’s podcast is just wonderful. I have followed Rishard’s progress and his dream to become an actor … including now starring in the BBC Doctors series!

I know/know of other young actors with Down syndrome. What progress they have all made over the last couple of years! Big shoutout to George Webster, starring in S.A.M and challenging societal stereotypes, including sexuality and learning disability.

I was invited to the Premiere in London of ‘The Peanut Butter Falcon’, for which Zack Gottsagen made Academy Awards history by becoming the first person with Down Syndrome to present the Best Live Action Short Film on The Oscars (2020). Such films really help people understand and embrace diversity, in all its many facets.

I was sad not to be able to go to the Premiere. And then in January 2020, I spotted the film in the film library on my way to New Zealand and it passed a very happy hour – a bit of a trip of a lifetime, just before the world went so pear-shaped. All these memories and associations come back by listening to a podcast on Ethics!

Enjoying Queenstown, New Zealand, before the world turned upside down in 2020!

Of the friends with Down Syndrome I have met through Grapevine, I must give a special shoutout to Heidi Crowter @HeidiCrowter95. Heidi is smashing stigma and stereotypes with her steely determination, resilience, courage, perseverance, joy, infectious giggle and firm belief that we can all achieve our dreams.

Heidi was a star of our #CovMindTheGap the movie’ film, which tells the story of our famous (infamous?) #CovMindTheGap workshop. So-called ‘hard-to-reach’ people queued at the door, took a full part in our Whose Shoes discussions before coming on our ‘Magic Mile’ walk. Complete with storytelling, dancing and singing in the streets of Coventry, this was one to remember.

Oh and by the way, Heidi got married last year – as people with Down syndrome do.

Congratulations again Heidi and James – keep rocking it and end #Downrightdiscrimination.

… Thinking of Coventry, my mind wanders back to ‘Our stories’ – my favourite-ever project in all my (#eek 30!) years working in social care in Coventry.

Authentic story telling – quite a story! I’ll keep it for my book …

My passion for personalisation was kindled by this project. We helped people with very complex needs to reclaim their lives through the choice and control afforded by personal budgets. We were successful in helping people to move back from extremely expensive (public services perspective) and miserable (citizen perspective – far from my family) ‘out of city’ placements. Unleashing this personal genie was a key trigger to me jumping ship from my day job to set up Whose Shoes.

I have a few spare copies of ‘Our Stories’ and have just sent a copy to Ghislaine Smith. Ghislaine is one of the current Darzi Fellows, doing a project in London to reduce the number of out of area placements for children and young people in care in the North West London. I met her at a #VirtualWhoseShoes session we ran in November 2020 with her #Darzi12 cohort. I find it fascinating how these different projects and connections wander into each other over so many years. I hope the booklet will be useful in some way, but learning from people’s stories never goes out of date.

… The local, regional, national and indeed international (especially now with such easy connectivity online) weaving effortlessly together …

Then there are all the friends I have met and experiences I have enjoyed through Nicola Enoch, Founder of Positive About Down Syndrome (PADS). I first met Nicola Enoch a few years ago when she attended our Whose Shoes workshop in Warwick. Well, what an amazing woman and story!

Nicola gave me a leaflet but I said it would have more impact if we took a photo and posted it on social media. I have since smiled seeing so many similar photos with movers and shakers in the maternity world: people Nicola has met through the #MatExp community. Nicola knows how to network and make things happen!

Nicola has helped me take forward work I started with Lewisham and Greenwich NHS Trust. Working with this innovative maternity team, led by Helen Knower, we had developed Whose Shoes scenarios exploring language used by healthcare professionals and experiences of parents and parents-to be around screening of Down Syndrome. Nicola became a huge champion of this work and attended a workshop with them.

Now Nicola and I plot and plan how we can best use our combined networks and resources to spread this thinking:
Over 70 NHS trusts now have Whose Shoes #MatExp resources.
Nicola has a vast network of parents across the country.
We aim to get parents working with midwives, learning from lived experience, in more and more parts of the country.

We held a #DownSyndrome specific event with the maternity and neonatal teams at Coventry and Warwickshire NHS and have also been successful in inviting parents of children with Down Syndrome to join ALL our #MatExp #WhoseShoes workshops, meaning this important perspective is regularly heard.

A highlight was when Colette Lloyd, an amazing Mum who spearheaded a campaign to re-think negative language around Down syndrome attended our Whose Shoes workshop with Barts Health NHS Trust. She caused so many ‘lemon lightbulb’ moments that she was invited to stay and run some training that afternoon.

Sarah-Jane Pedler


Teams like the maternity team in Cornwall, who really get Whose Shoes, have similarly done wonderful work in this area. I love following what they get up to in Cornwall. Sarah-Jane Pedler, a truly inspirational Professional Midwifery Ambassador and … well, everyone really (it is true coproduction) … hold an annual Whose Shoes workshop focusing on a different topic each time.

Angie Emrys-Jones @LookingUpBooks, who has a child with Down Syndrome,  is Book Lead at Cornwall Down Syndrome Support Group. She has sent me some beautiful books. I’m sure they must massively help those they are designed for – reassuring images and stories about ‘Going to School’, and helping grandparents (‘Tea at Grandma’s’) and so much more.

It is lovely when people send me these fabulous packages. Another last year was from Nicola : the wonderful crowdsourced #NobodyToldMe book, full of positive images and stories of children with Down Syndrome. Flo refers to this in her podcast.

I knew Nicola‘s dream was to be able to influence the RCOG. How brilliant would it be to help shape doctors’ thinking right from the beginning of their obstetric journey!

Florence Wilcock introduces the Whose Shoes ‘Ethics’ session at the RCOG

Florence managed to get us a Whose Shoes training session with doctors at the RCOG. These people have huge influence in life and death decisions but may never have actually met a child or adult with Down Syndrome. Nicola embraced the opportunity to talk to them about the issues raised through the different Whose Shoes scenarios.

What a revelation to see issues through the eyes of a proud parent of a lively teenager, who happens tp have Down Syndrome!

Nicola invited me to speak at her wonderful national conference for parents of children with Down Syndrome. Most of the speakers were parents; the agenda was packed. Every 15 minutes, a new (equally inspirational!) speaker! These people were wall-to-wall passion, leading initiatives and campaigns‘ (Don’t screen us out!’ and so many more). The energy of this #JFDI parents’ conference and the quality of the presenters will stay with me, which sadly is not the case for many far more expensive professional conferences I have attended … and indeed forgotten.

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I have enjoyed networking with these parents. Meeting them in person around the country (and now joining our #VirtualWhoseShoes sessions). Lynn Murray @LynnAMurray joined the workshop up in Dundee. Colette Lloyd @ColetteLloyd joined our workshop in Barts in London, and immediately got invited to take part in some training that afternoon.

Sarah Sutton @peaponderer sang our #MatExp the Musical ‘Better births are here to stay’ song with us in Surrey using Makaton, while Caspar @N_Down_A_Caspar came along with his mum and stole the show.

And then the new passion emerging through all of this. Seeing student midwife, Verity Lancaster @LancasterVerity, student of the year 2019, giving up her Sunday to travel to the Midlands to speak at Nichola’s conference, talking about the work we first started at Lewisham and Greenwich and how it inspired her to lead in this area. Hearing her humility (‘just a student midwife’) but with more understanding and compassion than many far more experienced people; speaking from the heart.

Being able to draw on this fantastic network of people and help showcase what they are doing is an ongoing journey. During the pandemic, Nicola‘s daughter Emily set up online sessions for her brother Tom and his friends, to reduce social isolation during the pandemic. These have now spread nationally.

We were delighted to help promote Emily’s sessions through the ‘Building the future’ #VirtualWhoseShoes work we did during the summer of 2020 and also in our recent Advent series.

I was privileged to support Nicola giving her Ted talk: ‘How I nearly terminated my son through ignorance‘. A powerful title – an even more powerful talk.

I am now linking busy Nicola into discussions I am holding with ‘Wave for Change’, a wonderful organisation in London who are enabling people with and without learning disabilities to socialise together as equals. Which links back to my early connections with Grapevine Coventry, because it that is what they have always done.

And it was Claire Flower, a music therapist at Chelsea and Westminster hospital, who led the music extravaganza in #MatExp the Musical, on the main stage at NHS Expo, who introduced me to them.

Another inspirational mother is my friend Yvonne Newbold @YvonneNewbold – so much so, she was awarded an MBE in the New Years Honours list! Check out her webinars and her book, both of which help thousands of parents of children with special needs: The Special Parents Handbook.

And the networking continues … Dancing brings joy!

Always good to hear from Community Catalysts! I joined their session in September …

… and they contributed a wonderful video about ‘The Buzz’ for our advent series.

In fact we all love Community Catalysts!! They make a lot of people very happy – like Grapevine and Wave for Change, helping people with and without learning disabilities to have fun together. True inclusion.

It is great to see that Mel, Nicola and Yvonne have all endorsed Flo’s podcast episode on Ethics, saying that she has tackled a very sensitive topic in a compassionate, informative and non-judgemental way.

Bridging the gap between services and people; shifting the power dynamics, promoting inclusion in the widest sense.

Yes, a lot of thoughts have been triggered by Episode 38.

Flo’s podcast has got off to a brilliant start in 2020, with thousands of downloads. I hope in 2021, it will become the go-to resource, with people not only subscribing to each week’s episode, but also dipping into all the richness that has already been created around a very human approach to obstetrics and maternity experience.

I am privileged to be part of this vibrant community focusing on what matters to people … which is really all that matters. Join us!

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The Obs Pod

So here it is! I am so excited to support Florence Wilcock, a.k.a. #FabObs Flo to launch her innovative podcast: ‘The Obs Pod’.

Flo’s podcast

Flo’s padlet helping you browse the key topics

Ever since Flo first phoned me, back in 2014, asking ‘if Whose Shoes would work in maternity services’, I have been impressed by her person-centred approach, her ability to challenge the status quo and push boundaries and to work WITH women and families. She lives and breathes her powerful ‘Wrong is wrong …’ mantra.

The Obs Pod’ will appeal to everyone who has an interest in maternity services. Everyone will be able to take something away from each episode, due to Flo’s wide-ranging experience, gentle reflective style and ground-breaking practice.

Gill Phillips, Creator of Whose Shoes? and co-founder, with Flo, of the #MatExp social movement

As a young Mum who was totally blown away by the inspirational obstetricians who delivered my baby nearly two years ago, I am excited to start following ‘The Obs Pod’. The first episode was fantastic; so interesting and captivating. I am sure the podcast will be hugely popular with pregnant women and maternity staff alike, along with so many other people who will find it fascinating to gain an insight into the thoughts and experiences of someone who shares the beauty and intimacy of pregnancy and birth as part of their working life.

Jenny Thirlwall, young Mum and member of #MatExp community,
West Midlands

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One of the things I have enjoyed the most over the last five years of #MatExp is the opportunity to get creative. From being ‘just’ an obstetrician, I have branched out and added: writer, poet, facilitator, film maker, speaker, campaigner to name just a few new skills.

Gill encouraged me to write a blog. I promised my husband it would be just the one, resulting in a nickname now from Gill ‘One blog Flo’. as I have lost count now of how many I have actually written after dipping my toe in the water.

I’ve enjoyed making Steller stories after a quick demo on a train journey, particularly our #MatExpAdvent series and my Nobody’s Patient monthly project reports. I have made videos, my contribution to our series for #MindNBody launch being one of my favourites, reading my poem ‘Reassured’. All this is alongside my day job and I find these creative outlets re-energise me, develop me and feedback into my day to day working in maternity care.

In December, I was lucky enough to meet Natalie Silverman @FertilityPoddy at RCOG women’s network meeting in Manchester. https://www.thefertilitypodcast.com/ She talked enthusiastically about podcasting. She made it sound both interesting and achievable. Something that wasn’t too challenging but that might reach a different audience. She was inspiring and willing to offer advice. I went home enthused.

I spent the next couple of months thinking and exploring, I decided I have things I would like to share. Adam Kay’s book ‘This is going to hurt’ has been a runaway success, but I want to voice a different perspective of the maternity world. One that would be accessible to women and staff alike. One that might ignite change and action as well as entertain. So, I have rolled up my sleeves, listened to a podcast series on making a podcast, taught myself the lingo, attempted the editing and technical bits and loved every minute.

So here goes, I am launching my next adventure:
The Obs Pod.
I hope you enjoy listening as much as I am enjoying making it!

Flo

Here are the episodes so far and new ones will automatically be added here. If you wish to access the programme notes Florence refers to each week, find the episode you are interested in on The Obs Pod (buzzsprout.com):

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#MatExp Whose Shoes? update

Some really exciting developments with #MatExp Whose Shoes? at the moment.

Bromley MSLC produced a ‘one year on’ report following up on their Whose Shoes? workshop at King’s College hospital using “I said, I did” as a framework to list all the fantastic outcomes that had come from pledges made on the day.

Language continues to be a big issue for women and families, but some great initiatives are now happening. Building on the Whose Shoes? workshops, Leeds and Colchester in particular are working on specific language challenges. I came up with a ‘Negativity Bingo’ and had great fun with my team at the NHS Fab Change Day #DoAthOn event launching #DumptheDaftWords.

I have been getting some exciting invitations to speak about building social movements and of course gave #MatExp a big shout out in my talk at the launch of #AHPsIntoAction, they have invited me back for a longer keynote session at their annual conference in June.

More hospitals are coming on board with the Whose Shoes? approach – the energy is particularly strong in London, the West Midlands and the South West regions. It has been great to present on several occasions now with Catherine MacLennan and Emma Jane Sasaru and to see people learning so much from their courageous sharing of their lived experience.

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Last Friday, 3 Feb 2017, we were invited to present a #MatExp Whose Shoes? session to get some good discussions going as part of a packed event launching #PanStaffsMTP in Stafford. We concentrated specifically on continuity and perinatal mental health. This is the county-wide transformation programme to improve maternity experience in Staffordshire to implement the national ‘Better Births’ vision. This informal film gives you a flavour.

We are proud of the crowdsourced ‘Nobody’s Patient’ project and thank everyone for your fantastic contributions. We now have over 120 new Whose Shoes? scenarios and poems and the new resources will be made available shortly to all the hospitals who were existing customers. Florence Wilcock, Sam Frewin and I are finalising the supporting toolkit and collating the case studies, ahead of our ‘wrap up’ event in March. We are trying to pull together lots of ideas for positive change, with or without a workshop. I hope you are enjoying the regular Steller stories, including Florence’s monthly reports.

Wonderful to see everyone doing such amazing work, speaking all over the place, building networks, spreading the word and generally making great things happen.

Keep up the good work!

Gill Phillips @Whose Shoes

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It is time to talk about the ‘perinatal’ aspect of Perinatal Mental Health (PMH): the ‘missing link’ in the national campaign

I am delighted to be able to publish today a guest blog for the #MatExp campaign from Mr Raja Gangopadhyay.  Raja is a Consultant Obstetrician and Gynaecologist with special area of clinical interest in Perinatal Mental Health (PMH) from West Hertfordshire Hospitals NHS Trust. He is a member of the Royal College of Obstetrician and Gynaecologist (RCOG).

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I would like to take this opportunity to share my views on why I feel so strongly about the role of the Maternity Services in Perinatal Mental Health (PMH).

Perinatal Mental Health (PMH) has two important components in its terminology: ‘Perinatal’ (period during pregnancy, delivery and post delivery) and ‘Mental Health’. Therefore the care of mums in the Maternity Services during this vital period is of utmost importance in PMH: it should be a no-brainer.

But sadly, PMH is the only one area of Maternal Health where I do not see a strong voice of the Maternity Services in the national campaign.

This has remained ‘Cinderella’ within Maternity Units in spite of the glaring facts:

  • PMH is still one of the leading causes of maternal death in the UK.

  • This is one of the most prevalent conditions mums suffer from during their pregnancy and postpartum period (at least 10% of mums suffering from this).

I strongly believe that without robust ‘perinatal’ care, women would continue to suffer and die from PMH illnesses, no matter how much we spend to expand specialist Mother and Baby Units (MBUs).

Therefore this is the time when we must recognise this important area and raise awareness.

I am trying to address this issue through my campaign on social media and as the Royal College of Obstetrician and Gynaecologist’s (RCOG) Representative to the Maternal Mental Health Alliance (MMHA).

What do I mean by PMH ‘within’ Maternity Services?

Suffering and deaths from PMH illnesses are often preventable if appropriate measures are taken during pregnancy and in the immediate postpartum period.

A prevalent health condition like PMH must be managed with the same readiness as managing other medical conditions in pregnancy such as diabetes, high blood pressure (pre-eclampsia) or heart disease.

The only way to ensure that the women with PMH are appropriately cared for according to the NICE guideline (2014) is to have:

  • A dedicated PMH team within every Maternity Service:

A Consultant Obstetrician, Specialist Midwife, a Perinatal Psychiatrist, a Specialist Psychiatry Nurse and a Paediatrician should jointly lead this service locally. The service should be easily accessible to the mums.

  • A dedicated Obstetric-Psychiatry Antenatal clinic

  • Communication with Community Team:

This Maternity Service should have clear links with GP, Health Visitor (HV), community MH Team, Liaison Psychiatry services, Mental Health Crisis Team, Children and Young People services, Peer Support groups and other charitable organisations.

  • Robust Care Pathway:

There should be a clear pathway for risk assessment (at the booking visit and at every consultation), early identification and treatment. There also should be provision of a multi-professional team meeting on a regular basis.

  • Dedicated specialist service and support:

For conditions such as PTSD / birth trauma, fear of pregnancy and child birth (‘tocophobia’), bereavement and support for mums and dads whose babies are admitted to NICU.

  • Pre-pregnancy advice service:

It is important to have specialist advice and support for women (with PMH illness/ traumatic experience in previous pregnancy) who are considering pregnancy.

  • Patient involvement : ‘Patients first and foremost’

PMH is an area where patients’ opinion must be considered in developing local care pathways. Services must be evaluated on a regular basis based on patient experience.

I firmly believe that all the health conditions should be treated in the same way with professional expertise and kindness and without any prejudice. I am not sure why we still classify health conditions into ‘physical’ and ‘mental’ when there is often an overlap.

Psychological care in pregnancy, delivery and beyond…

It is unfortunate that psychological care has remained a very neglected part within Maternity Services. The reason given for this is ‘the staff are too busy’.

However pregnancy is probably a period of life where psychological support from the HCPs is needed the most.

It is especially important when mums could potentially have severe stress during pregnancy and the postpartum period due to the following factors:

  • Previous history of miscarriage, ectopic pregnancy, IVF, traumatic childbirth.

  • Any other family member or friend has had complicated childbirth experience.

  • Sudden life event such as breakdown in family relation/divorce, loss of employment, bereavement in the family or loved one, relocation/migration and domestic violence.

  • Sexual abuse in childhood or pregnancy as a result of sexual violence.

  • Associated pregnancy complications (for example premature rupture of membrane, high blood pressure, diabetes, concerns on baby’s growth or SPD).

PMH is not only PND and Puerperal Psychosis (PP)…

Many believe that PMH is a term equivalent to the care of Postnatal Depression (PND) and PP.

PMH includes specialised care for women (during pregnancy and one year after the childbirth) with any mental health condition (such as anxiety, depression, bipolar illness, schizophrenia, OCD, eating disorder, and personality disorders).

PMH must include bereavement care (miscarriage, still birth and neonatal death), traumatic birth experience/PTSD, support services for mums and dads whose babies are admitted to NICU and tocophobia (fear of pregnancy and childbirth).

Another important component should be the psychological care of mums and dads throughout the journey of pregnancy, delivery and postpartum period.

PMH, in my view, must be recognised as a separate subspecialty in the training of Obstetricians and Midwives.

Womb

Why is identification in pregnancy and immediate postpartum period so important?

  • Effects of psychological stress in pregnancy:

There are now plenty of research results, which indicate the long-term impact of stress during pregnancy on the brain development of the baby while it is in mum’s womb. Prof Vivette Glover, an eminent Professor of Perinatal Psychology from Imperial College London, explains this: http://www.beginbeforebirth.org/for-schools/films#womb

Therefore timely intervention and adequate support during pregnancy can prevent long-term effects on the child.

  • Care Planning to prevent serious illness:

All pregnant women with risk factors to develop worsening mental health conditions should have a plan of care during delivery and postpartum period.

Confidential Enquiries into Maternal Deaths have repeatedly pointed out that in the majority of cases of deaths from suicide, there is a lack of care planning during pregnancy.

This is only possible through appropriate care within the Maternity Services and multiagency communication.

  • Enjoying the journey of pregnancy:

Experience of pregnancy and birth creates a lasting memory for the mums and dads for the years to come. Therefore this should be an enjoyable experience for the woman and her family to cherish in happiness in the future.

As HCPs our role is to ensure we support and empower women to make informed choices for the safety of her and the baby and most important of all a very positive birth experience.

  • Helping mums to make informed decision regarding medications:

Mums should get proper advice regarding the use of medication in pregnancy and after delivery.

Pregnancy is a short window but an excellent opportunity to address health conditions.

  • Bonding and attachment:

PMH conditions can adversely affect the bonding with the baby and the mum.

‘A stitch in time saves nine’: Prevention of serious PMH illnesses is only possible through good care in Maternity Services.

Guardian capture

Having discussed the importance of the role of Maternity Services in PMH, now let us find out what is happening in the Maternity Units……

A journey of revelations…

I contacted many Maternity Units across the country to find out the provision of PMH services within their Units. What I found was extraordinary.

I raised my concerns in a letter published in The Guardian: http://www.theguardian.com/society/2015/oct/14/perinatal-mental-health-provision-badly-lacking .

I raised this issue with the Maternity Review Team, during my meeting in September (2015).

Although there are examples of good service, the overall structure within the Maternity Units is very poor:

  • Often there is no dedicated Lead Obstetrician and/or Specialist PMH midwife

  • Many Units do not have formal debriefing services (for traumatic birth experience), specialist bereavement midwives and support system for parents with babies admitted to NICU.

  • There are hardly any dedicated services for women with fear of childbirth.

Delving deep into the challenges….

To have a better understanding of the need, I embarked on a journey to meet professionals from all the relevant Royal Colleges (RCOG, RCM, RCPsych, RCGP), Health Visitor organisations, Maternal Mental Health Alliance (MMHA), MPs and All Party Parliamentary Group (APPG), NHS England, CCGs and other national Campaign Groups.

It was revealed that overall there is very little understanding of the vital role of the Maternity Services in PMH.

Thankfully RCM is campaigning for a Specialist Midwife in every Maternity Unit.

But the main barriers are the following:

  • Lack of Mapping of the existing services in PMH within Maternity Units (such as the MMHA map of the available Perinatal Psychiatry services).

  • Lack of a national standard of the service provision within Maternity Units (according to the number of deliveries and complexity of cases).

  • Poor collaborative work among HCPs: as often the Maternity Electronic record system is not accessible to other HCPs and vice versa.

  • Lack of standard Training programme for the Obstetricians and the Midwives.

  • Lack of adequate focus on PMH illnesses in Antenatal Education.

I have concerns that unless these issues are resolved appropriately, we cannot provide the best quality of care for women with PMH illnesses.

With the best of my abilities, I am currently working closely with other national organisations to address these areas.

Maternity HCPs: Please, please do something and don’t wait for things to happen….

Charles Dickens

It is true that funding is necessary to set up specialised PMH services and Mother and Baby Units (MBU). However Maternity Units should not wait for the approval of their business cases.

In my humble opinion, funding is not everything. Our professional values are the most important factors in patient care:

  • Kindness:

Simple measures such as a smile, empathy and a willingness to listen to the concerns of the mums and dads could make a huge difference in patient experience.

  • Communication:

Take every opportunity to explain the situation and ensure that appropriate wording is used during communication.

  • Continuity of care:

Try to ensure continuity whenever possible or communicate adequately with the rest of your team.

  • Local Alliance:

Please try to develop Local Alliances with Community Midwives, Health Visitors, GPs, all available community mental health services, Peer Support groups and children’s services.

This could significantly improve communication among the multi-agency teams in caring for mums with PMH illnesses.

  • Listen to concerns:

Please create opportunities to listen to the concerns of the user group. This may be in the form of promoting your local Maternity Service Liaison Committee (MSLC) or Patient Panels.

If possible, please read the real life stories of the Lived Experiences on the Internet: it would help you to think ‘outside the box’, have a better insight into the PMH illnesses and give you inspiration.

  • Raise awareness:

Arrange patient engagement events, Road shows or Community Events with local CCGs.

Participate in Social Media support, such as #PNDHour (Wednesday 8-9pm) and #BirthTraumaChat (Monday 8-9pm):

This would help to raise awareness, remove stigma and give mums and dads a ray of hope.

  • Arrange training on PMH:

Please ensure all staff are adequately trained in your local Units.

  • Get involved in your Regional PMH network:

Many regions now have regional PMH Networks. This could be an important place for information sharing among the Maternity Units.

  • Please do not forget dads:

There is now good evidence to support that dads can suffer from PTSD/PND. Please take every opportunity to support and communicate with dads.

  • Keep yourself updated:

PMH is a rapidly evolving area; therefore HCPs must keep their knowledge and skills up-to-date through continuous professional development.

If unsure, please seek help and escalate to your senior colleagues: an unsafe advice from a HCP could endanger an invaluable life.

Working together to make a difference…

We ALL need to work together to prevent suffering and death from PMH illnesses.

If you have any suggestions for improving PMH services within Maternity Units, I would be very keen to know (Twitter: @RajaGangopadhyay3).

If you are involved in good projects locally or are aware of any good practice, please share with everyone through #MatExp.

Acknowledgement

I am grateful to #MatExp for giving me this opportunity to write this blog.

I am immensely grateful to all the Lived Experiences for sharing their stories, which have enriched my knowledge on PMH much more than any textbook and journal article.

My thoughts are with all the bereaved families who have lost their loved ones due to this dreadful illness.

Raja Gangopadhyay

2015

 

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Safety, Experience, or Both?

A blog post from #MatExp co-founder Florence Wilcock.

Flo

There has been much discussion recently about safety within maternity services including a discussion on #MatExp Facebook group. A particular issue that bothers me is the idea that safety and experience might be two separate and mutually exclusive issues and it is this thought that drives me to write today.

Safety is paramount. The purpose of maternity services is to provide safe care through the journey of pregnancy and early newborn life. Every appointment in the NICE pathway is designed to screen for potential problems and ensure they are managed effectively. Every healthcare worker know this is the aim. The 20 week ‘anomaly’ scan might be considered the time to discover the sex of your baby if you wish and to get some photos but the medical purpose is to ensure the baby is growing well, with no abnormalities and to check where the placenta is localised to exclude placenta praevia (low lying placenta) which can cause life threatening bleeding.

But there is more to pregnancy and becoming a parent than safety isn’t there? I am currently reading Atul Gawande ‘Being Mortal’ where he eloquently demonstrates that keeping elderly people ‘safe’ is not enough, there is more to life and living than safety alone. He describes a number of times when giving elderly people purpose such as a plant or animal to look after or more freedom to live the way they wish despite disability it makes a significant difference to their wellbeing. Sometimes this path may deemed ‘less safe’ but for that individual may make all the difference. This comes back to choice. Safety & choice can be tricky ones to combine successfully.

This does not mean I am belittling safety. As a consultant obstetrician it falls to me to talk to couples when the worst has happened and their baby has died. I also care for women who have had unexpectedly life threatening complications. I know I am with them during probably some of the darkest hours they will ever experience. I cannot pretend to understand how they feel but I do know I have been part of those intimate moments of grief and with some families that has followed through into supporting them sometimes for years. As a hospital we have a robust process of incident reporting and the feedback from a Serious Incident investigation (SI) again will sometimes fall to me. In some cases there is nothing that we think could have been done differently in some cases I have to sit and tell an anguished couple that we have failed them and that maybe things could have been different. It is a devastating thing to do, there is absolutely nothing that can be said that will make the situation better. It feels as if you have personally taken their existing despair and dragged them into an even more unthinkable place and the only thing you can say is ‘sorry’ which feel hopelessly inadequate and trite for such a situation.

So if I could guarantee safety I would in a flash but it is not that simple. Maternity care is delivered by people and unfortunately to err is human. We cannot design a system free of risk because however hard we try the variable of human error gets in the way. We can introduce systems that help minimise the impact of these errors but we can’t eliminate them. My favourite analogy for risk management is James Reason’s model of Swiss cheese. The event only happens when the holes in the ‘cheese’ line up the rest of the time the barriers put in place prevent the error. An example in maternity care might be the introduction of what we call ‘fresh eyes’. A midwife looking after a woman on electronic fetal heart monitoring might misinterpret this or not see the subtle changes over time if she has it in front of her constantly. ‘Fresh eyes’ means another midwife or obstetrician comes and looks at the trace on an hourly basis. This means if unusually the first midwife has made an error there is a system that means it is more likely to be corrected.

The concept of a ‘No Blame’ culture is another example designed to minimise human error. The idea that if one sees or makes an error one should report it without fear so that learning can be gained from it. It may be the learning will be the need for some individual training but equally it might be something totally different. If staff are fearful of consequences then under reporting might be the result and safety gaps may not be identified. Encouraging openness about mistakes and errors is vital but difficult. In maternity it isn’t as if we can just operate our way out of this problem .We know the huge rise in Caesareans sections in the last 30 years has not improved the outcomes for babies but has instead cause maternal health problems. So in maternity as other medical specialties we have to constantly refresh and re-invent what we are doing to try and improve safety. As obstetricians we tread a difficult path trying constantly to call correctly just the right amount of intervention at just the right time.

BirthJourneys

So where does experience fit in I hear you ask? There is abundant published evidence of positive association of patient experience with clinical safety and effectiveness, in other words if your patients (or I prefer users) are having positive experiences then you are running a safer service. It’s hardly surprising if we communicate and explain things to women and their families that we will be more likely to communicate effectively to other members of the multidisciplinary team. If we are open and honest then woman can challenge assumptions and make sure we haven’t missed something critical, a woman knows her own history inside out whereas we might omit a key point. To me one of the most shocking things that was said at our ‘Whose shoes’ #MatExp workshop last year was that women can feel intimidated and unable to ask questions. Trust and understanding between health professionals and those we care for are vital. We cannot possibly hope to improve safety in isolation, experience has to improve too.

There are two specific elements of #MatExp of which I think epitomise the safety -experience overlap. The first is an on-going ever growing constructive conversation between women, families, obstetricians, midwives, health visitors, paediatricians, families and anyone involved in maternity services. Only by tackling the difficult conversations without hierarchy in an equal and respectful way can we improve maternity care. Listening and talking to one another is critical not only as we work with women but in dissolving those barriers and difficulties that sometime exist between different professionals. Flattening of hierarchy, team work and the ability of anyone to challenge is a well-recognised component of a safety culture. We are doing this both locally using the workshops and board game and more broadly via social media and the website.

The second element of #MatExp is that personal sense of responsibility to take action. Own what you are doing and why you are doing it. ‘Wrong is wrong even if everyone is doing it’ that doesn’t mean leave it to someone else. It means that health professionals and women can take action and influence maternity experience up and down the country and through that impact on and improve the safety of maternity care. So in final answer to my question I do not think it is a choice safety or experience I believe the two are fundamentally intertwined. So what will you do to improve #MatExp?

What will

Florence Wilcock, 2015

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Time to Act for Continuity of Care

There have been some fantastic conversations taking place on the MatExp Facebook group, with lots of ACTION threads being posted to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

Over the last six months two big themes have emerged from #MatExp for me. The first is WHY are so many age-old issues still a problem for maternity care in this country? The answer to me is the working environment midwives face, as discussed here. The second is HOW can we make a real difference to family’s maternity experiences? So many actions have come out of #MatExp but the one that stands head and shoulders above, in my opinion, is continuity of care.

I don’t mean Ed Milliband’s diluted version of “the same midwife throughout labour”. I mean the same midwife antenatally, during labour and postnatally, or the same team of two or three midwives for the whole of that period. Women who hire independent midwives or who have access to OnetoOne Midwives have this type of continuity antenatally and postnatally, but they only have those same midwives during labour if they give birth at home. IMs and OnetoOne are not insured to act as midwives in hospital settings, although they can accompany women to hospital as advocates. Doulas are also with women as advocates and support for the whole of their pregnancy, birth and postnatal period but they are not qualified to act as midwives.

Continuity

When I brought up continuity of care as an ACTION thread on Facebook, I asked the following questions:

  • What are the barriers to providing continuity of care on the NHS? Is it as simple as not enough midwives, or is there more to it than that?
  • As an anxious person I really prioritised continuity of care, so used an independent midwife in my first pregnancy and a OnetoOne midwife in my second. What would my options have been on the NHS, under what circumstances can women be put onto a one-to-one care pathway?
  • What ACTION can we take to make continuity of care a reality?
  • What ACTION can we take to build good relationships between women and their midwifery teams where continuity of care is NOT a reality?

The suggested actions from the discussion that followed were:

  • Demonstrate the benefits of caseloading to NHS midwives
  • Strong leaders at the helm of trusts who themselves understand how to implement and lead their midwives into wanting continuity of care
  • NHS trusts to talk to independent midwives and social enterprise midwives who are the knowledgeable ones when it comes to providing continuity
  • Think about options for a team approach. One group member directed us to look at the Streatham Valley midwife team: “They were part of a pilot scheme for community midwives where you saw the same midwife and often they came to you for booking in and later appointments. They also checked you at home when in labour to avoid wasted trips to hospital and they have an excellent home birth record. Out of my ante natal group of 5 first time mum’s none of us had anything stronger than gas and air we had one home birth and only one use of forceps. They are amazing.”
  • Understand the positive impact that continuity of carer can have on patient safety and infant mortality
  • Find ways to care for midwives and avoid the “burn out” that is often associated with a caseloading model of working
  • Women with more complex pregnancies to be caseloaded by a team expert in their complexities – in other words, being at a higher risk of complications should not exclude women from continuity of care, in fact if anything these women need it more
  • Consider personalised budgets ( i.e. the NHS would allocate a woman funding to choose the service they wish) and whether or not this concept could help in delivering continuity of care
  • If continuity is not available then note-keeping needs to be excellent so women don’t always have to repeat themselves (which can be particularly hard following baby loss), and so that plans can be discussed and followed up
  • Women who are vulnerable or at risk of perinatal mental health problems should be at the front of the queue for continuity of care
  • Ensure that families are aware of and understand any choices they do have when it comes to their maternity care team

One healthcare professional commented “The commonest refrain you hear from mothers these days is ‘I never saw the same midwife twice’; this is a great sadness to me as surely the greatest gift to mediate the stressful vocation that is midwifery, is the relationship you develop with your ladies.”

Another woman who had opted for independent midwifery care in her second pregnancy commented “I just needed to know that someone was going to know me personally and take my wishes/needs seriously.”

Continuity of care was the strongest theme in the feedback to the National Maternity Review provided by my private Facebook group. It comes up time and again in discussions – I was discussing it today with student midwives at Salford University and they agreed that many midwives want to work to a caseloading model as much as families do. It just has to be constructed in a way that makes it feasible for midwives, many of whom have young families themselves.

Campaign for Choice
Campaign for Choice

This is not news. The RCM’s Better Births campaign has continuity of care as one of its key themes. The demand for caseloading from families accounts for the popularity of OnetoOne midwives in the areas where they are commissioned. A group of mothers in Greater Manchester is campaigning for the local CCGs to make this service available to women, and as someone who has benefited from that company’s care I joined them on a demonstration in Manchester city centre. If continuity is not going to be available on the NHS then OnetoOne might be the best option for families, although as this post of mine shows not all women find that the various services work together. 

What I find striking is how much continuity of care would impact on other areas where the #MatExp campaign has asked for ACTION. Anxiety is reduced if women know their carers. Emotional well-being is improved as are infant feeding outcomes. Dads & partners have more chance of being involved and having their own struggles recognised if they are able to get to know the family’s care team. It will be far easier for midwives and health visitors to collaborate if it is clear who is looking after which families.

I was delighted when an insurance solution was found for independent midwifery in this country. I also have high praise for the model of care provided by OnetoOne. Support and advocacy from a doula can be invaluable. But continuity of care should not be on the periphery of the UK maternity experience. It should BE the UK maternity experience.

 

Helen Calvert

@heartmummy

2015

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#FlamingJune – #Matexp igniting the flames to improve maternity experiences

Wow what a month its has been!  The whole of June has been #FlamingJune, a month when everyone was asked to share actions big or small to show ways they are going to improve maternity experiences. Everyone whether a mother, a doula, a midwife, blogger or campaigner was invited to post actions on the Matexp facebook page, the twitter hashtag #Matexp or the Matexp website.

What a response! In fact there have been so many actions it is impossible to list them all. But here is a little round up of the general ideas behind the actions.

LISTEN, this was mentioned by so many and shows how important is it that women are listened to, in pregnancy, during birth and afterwards. Many voiced that this simple action alone would have improved their experience and many voiced that listening to women more was their action.

ADVOCATE, for women, for families, by Blogs, campaigns, education classes and working with local maternity liaison service committees many spoke of ways they will seek to support families. Some will be doing so be simply voicing their own experience.

CHOICE, campaign for, raise awareness of, make sure women are aware of and given choices and that their choices are listened to, respected.  Some actions involved women simply educating themselves on the choices available to them, while others spoke about raising awareness of options and choices and how to get support.

SUPPORT, for breastfeeding, families with babies in NNU or on paediatric wards, perinatal mental health and for families that have lost their precious babies. Also how healthcare professionals can all work together to make support for families better. There were so many amazing ideas and actions on support and again many voiced how important support is.

Some said that their actions were to become midwives and health visitors and to be on the frontline of supporting women and their families, to change cultures and improve maternity services.

During #FlamingJune we have discussed, tongue ties, infant feeding, baby loss, perinatal wellbeing, birth trauma, medication while breastfeeding, NICU, low birth weight, PND and much more. These were based around the Matexp twitter Alphabet.

This month saw us celebrate fathers day and the importance of dads to families. We saw beautiful pictures on the Matexp facebook page of dads doing skin to skin, holding, playing and loving their families. It was so moving, and truly showed how valuable they are and all partners, to the wellbeing of families.

This month was also #celebratebreastfeeding week. Again we saw amazing pictures and comments of the good support that families have had, but also many posts on the lack of support that so often seems the situation many families face. With many areas finding cuts are being made to breastfeeding support it is a timely reminder of how important it is that feeding support is part of a good maternity experience.

#FlamingJune saw the release of the first, of we hope many, videos on Matexp. Florence, Gill and Sarah in a really moving video shared with us all how and why Matexp started, the whoseshoes workshops and the impact it has had on services.

Also the first Matexp workshop to be held outside of London in Guernsey which is so exciting. Hopefully workshops will start to spread all over the UK and who knows eventually, maybe the whole world.

So as we reach the end of #FlamingJune what now?  Well if you haven’t made an action you still can, it doesn’t have to be a big change it can be as simple as thinking about the language we use around a pregnant women or to share our story. If we have made an action, keep going to see it through. Every small change we make as individuals makes a difference. It maybe that your action will be hard to make happen, or will take a long time, but don’t give up because even just changing the maternity experience for one family makes it so worthwhile.

There are more plans ahead for the coming months, so much to look forward to. Thank you for the journey so far, for your actions, thoughts, comments and support. Matexp puts families at the heart, its overall theme is kindness and compassionate care. It is a safe place for everyone to voice their views. So take a look and get involved in making maternity experiences better for everyone.

IMG_5935

Emma Jane Sasaru

@ESasaruNHS

 

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#Matexp – Emotional Wellbeing – what do families really need?

 Supporting families – Emotional Wellbeing


#Flamingjune is well under way and there has been so many wonderful conversations taking place on the Matexp facebook group. As part of this months campaign, ACTIONS to improve services have very much been at the forefront with everyone sharing ideas to make sure support given to families is the best it can be.

With this in mind one of the subjects discussed was Emotional Wellbeing. Many shared heartfelt stories, and personal experiences as well as ideas that would have made a difference them and their families.

Matexp asked;

  1. How much do you feel your pregnancy, birth and postnatal care affected your emotional wellbeing?
  2. How do you think we can help prepare women and their partners for the impact that birth and caring for a new baby has on emotional wellbeing ?
  3. What supported or helped you to protect your emotional wellbeing?
  4. What can be done to help health care professionals be able to support families better?

Many commented on how we often under estimate the impact having a new baby has on a family. It was said that ‘adapting from working life to being at home was overwhelming’, ‘that often dads are working long hours and need support too’ and having somewhere to go to talk to others and relax was vital. Emotional support was mentioned as being a “basic need” for families.

One comment noted that ‘real life’ parenting needs to be discussed at antenatal contacts. “We are bombarded with the prefect images of parenthood, I don’t think people are prepared for the realities of parenthood – being totally exhausted but this little person still needs feeding and there is no milk in the fridge so you cant even have a coffee to wake up you”.

Another commented’ ” professionals need to understand the stresses which parents face not just with the birth, but financial, logistical etc”. What suggestions were made that would help? “By looking through the eyes of the patient, and trying to see things from their point of view”. Yes walking in another’s shoes so to speak showing empathy, and understanding helps provide support that protects the emotional wellbeing of families.

Many voiced feeling left alone, isolated and ‘fending for themselves’ after the birth of their babies and how this impacted their emotional wellbeing. Many felt afraid to voice they were struggling with motherhood and kept it to themselves worrying they be dismissed or viewed as ‘failing’.

Others voiced how important good support from health visitors, peer support and support groups was to their emotional wellbeing and not just for mom but dads too. In fact is was mentioned how important it is to ask dads how they are doing too!

Again and again support was mentioned for birth trauma and loss of a baby. Things such as professional counselling to be available as standard and peer support on wards and units. As well as health professionals knowing where to signpost families for support including local charities and national organisations.

One comment read “the single biggest thing would have been to treat us respectfully”. Very sobering.

So what were some of the actions that came out of the discussion to help with emotional wellbeing?

  • Maternity units to have specially trained staff to care for those that have suffered birth trauma, loss or mental health issues.
  • To remember that care involves emotional support not just physical.
  • Peer support for families on wards and in NICU.
  • Specialist counselling services available as part of post-natal after care and on NICU unit so families do not have to leave their babies.
  • Antenatal support on ‘real life’ caring for a baby, as well as how to look after their emotional wellbeing.
  • After birth de-briefs for sharing of experiences both good and bad to help improve care given.
  • Remember that dads need support too.
  • Health professionals to be aware of support available to families so they can signpost.
  • For all staff supporting families to show kindness, compassion and empathy and provide care that is patient-centred meeting individual needs.
  • Most of all treat families with respect. “letting mums and dads know that being good is good enough – they don’t need to be perfect”.

Emotional wellbeing is important for families, by sharing experiences, listening and working together we can help improve the maternity experience for all.

There is beauty in giving to others

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Emma Jane Sasaru

@ESasaruNHS

 

 

 

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Time to Act on Anxiety

There have been some fantastic conversations taking place on the MatExp Facebook group, with a new ACTION thread every day to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

One of the first topics we looked at was Anxiety, as it had been one of the first issues raised on the MatExp ABC.

Anxiety capture

“Anxiety” covers a number of areas when we look at maternity experience.  Mothers can have existing problems with anxiety, that have already been identified.  They could have had anxiety for some time but the experience of having a baby has intensified it (my experience).  It could be that they begin to suffer with anxiety postnatally – Emma Jane Sasaru has written here of her experience of perinatal anxiety.  Or perhaps their anxiety is focused on giving birth – many mothers are incredibly anxious about what the end of pregnancy has in store for them.  Finally, there will be mothers who have experienced birth trauma or baby loss and this can understandably provide a background for anxiety in subsequent pregnancies.

Anxiety UK says of anxiety that it is “something that can persist whether or not the cause is clear to the sufferer”.  The organisation lists the symptoms as

Anxiety UK Registered Charity Number (1113403) Established 1970
Anxiety UK Registered Charity Number (1113403) Established 1970

Anxiety UK

Certainly, on a personal note, “feeling detached from your environment and the people in it” goes some way to explaining why it took me such a long time to properly “fall in love” with my babies.  There was no “rush of love” for me when I gave birth and first held my children, despite my having positive birth experiences both times.  “Feeling like wanting to run away / escape from the situation” – many new mums feel like this at times when coping with a newborn baby but it is important to recognise when feeling like this “now and again” has accumulated into something more problematic.

action-clapboard

So how can we ACT when anxiety is a factor in maternity experience?  Let us first look at how women can help themselves:

  • Practice HYPNOBIRTHING – a number of people involved in the #MatExp campaign suggested this as a great way to alleviate anxiety in pregnancy and anxiety about birth itself.  Pregnancy Coach Suzy Ashworth explains here what hypnobirthing is all about, and how it’s beneficial for all women regardless of the way they plan to give birth.
  • BE HONEST and try to explain your anxieties to your healthcare professionals.  Find out as much as you can about anxiety and ways to manage it.
  • GET HELP.

Now these actions all assume that the woman in question is aware that she is struggling with anxiety.  But this is certainly not always the case.  This is where the birth professionals come in.  How can they act when anxiety is a factor?

  • Understand how anxiety can manifest itself.  If a women is finding it difficult to talk about something, if she is quiet and refusing to engage with a situation, if she practices avoidance by walking out on a conversation then think “anxiety”.
  • Give women the opportunity to talk openly about their fears, and really LISTEN.
  • Offering reassurance can be helpful but it can also be dismissive – being told “don’t worry, that won’t happen” can heighten a woman’s anxiety as she will feel as though her fears are not being taken seriously. Always remember that those fears are REAL to her, however bizarre they may seem to you

What services are available to women in your area who are struggling with anxiety?  Are the following available (and do you know how to access them?) or do they need to be put in place?

  • Hypnobirthing, mindfulness and meditation classes
  • Cognitive Behavioural Therapy (CBT)
  • Specialist mental health midwifery teams
  • Training for midwives and health visitors on recognising anxiety

Where services are available, there are simple ways in which women’s access to them could be improved:

  • Please check on the mental health of the women you care for throughout their pregnancy and postnatal period, not just at their booking in appointment.
  • If you offer anxiety support, please make it possible for women to enquire about these services by email, not just by phone. Phone conversations are very difficult for many anxious people, and services only being accessible by initial phone assessment put up a real barrier.

When we look specifically at prenatal anxiety, there are changes to our birth culture that could make a big difference:

  • Empower women to trust their bodies. Too many women fear that they will not be able to give birth safely – how can we help them to understand how their body works and reacts in labour, and how it can be supported and encouraged to do its job?
  • Ensure that women understand that they have the control to make their own birth choices.  Feeling as though they have no control is a huge factor for anxious people, but encouraging informed choice and putting women at the centre of their birth experience can help to alleviate this.

As with almost every discussion of maternity experience, continuity of care becomes an issue.  Where women know their birth professionals and have built up a relationship with them, anxieties are reduced.  Whilst continuity of carer is offered in places on the NHS this is far from the norm at this moment in time.  If you struggle with anxiety then there are care options available to you to ensure that you have continuity in pregnancy and beyond:

  • Use an independent midwife.  There is a cost involved in engaging the services of these professionals, but it is always worth speaking to them before dismissing the idea on the basis of cost, as there may be ways that the cost can be reduced.
  • Use a OnetoOne midwife.  This is a “free at the point of delivery” service, but unfortunately it is only available in some areas.  Find out if they are commissioned near you.
  • Use a doula.  Doulas support women and their families during pregnancy, childbirth and early parenthood. This support is practical and emotional but non-medical in nature.  Again, there is a cost involved, but there are ways that this can be reduced so it is worth contacting your nearest doulas to discuss the options open to you.

Lindsey Middlemiss (aka “Newbury Doula”) is having lots of discussions at the moment about the wider provision of doula support for women with high anxiety of at high risk of PND, including women who have experienced baby loss or who have had birth trauma.  There is a possibility of some NHS funded pilots and research studies in the future, and the Doula UK Access Fund will likely be changing and expanding its criteria.  We eagerly await developments in this regard.

#MatExp “Language” Champion Leigh Kendall has written extensively about support for bereaved parents and I know she will be suggesting further actions during #FlamingJune.  Therefore I don’t want to focus too much here on anxiety in those who have experienced loss, but one thing did come out loud and clear from the discussions we had on Facebook:

There is currently no standard care pathway for those who are pregnant following the loss of their baby.  They might be labelled “high risk” depending on whether baby loss was a result of pregnancy complications, but their emotional needs are not automatically met.

This is staggering to me.

This has to change.

On a positive note, one member of our community is aware of midwives at her local hospital looking into setting up Rainbow Antenatal Clinics specifically for those who are pregnant following loss.  Is this something that you could look into at your hospital?  Is this something you already offer?

Another positive that I would like to finish on is the new provision of antenatal appointments from our health visiting teams.  Vanessa (aka Frustrated HV) had this to say on the subject, with specific reference to pregnancy following loss:

“I really do hope that the antenatal visiting programme being undertaken by health visitors & the increased communication between midwives & health visitors & GPs will mean that fewer women experience this neglect… Because it has to! A known history of loss in or around pregnancy should now automatically trigger (through midwife reporting) a Universal Plus antenatal health visiting service. Which would mean that you would have support throughout the pregnancy (as well as after) & signposting/referral to more specialist services if needed. No one should still be experiencing this type of trauma. You are correct that lots still needs to be done, but lines of communication are being created & general awareness is improving & I know that with the continued efforts of all the people I have seen in #MatExp & through all the conversations & wisdom shown, we will change things for the better.”

 

 

Join the conversation. #MatExp #FlamingJune

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