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Nobody’s Patient workshop

by / #MatExp Actions, #MindNBody - holistic care, Baby Loss, Birth Trauma, Caesarean Sections, Continuity of Care, Dignity and respect, Environment and Facilities, Evidence of #MatExp outcomes, Nobody's Patient, Postnatal Care, Pregnancy Complications, The #MatExp Journey, Whose Shoes / Comments Off on Nobody’s Patient workshop

Originally posted September 26, 2016 by Leigh Kendall 

This post was written by Leigh Kendall, mum to Hugo who sadly died aged 35 days. The post was originally published on 26 September, 2016 on Leigh’s now defunct personal blog. You can get in touch with Leigh on Twitter at @LeighAKendall.

Nobody’s Patient workshop: St George’s Hospital – 26 Sep 2016

Friday September 23 was a special day, one I have been waiting on for a long time: the Nobody’s Patient workshop at St George’s Hospital.

The workshop is a key part of the Nobody’s Patient project and received funding from the Maternity Review Challenge Fund . The project evolved from the grassroots social media change platform #MatExp, and was inspired in part by my experiences with Hugo.

My beautiful Hugo

Bringing Nobody’s Patient to St George’s, where Hugo was born, lived and died is an achievement that means so much to me that it is hard to fully express using mere words.

The aim of the workshop was to get health care professionals involved in caring for families like mine to understand more about our experiences, and to make pledges to improve experiences for other families. I can’t change what happened to us, but through #HugosLegacy I wanted to help future families’ difficult experiences be a tiny bit easier.

The first workshop, in Kingston in early July 2016 was a huge success – everything was crossed for St George’s to emulate that. I was delighted to see so many people attending the workshop – all busy people prioritising the workshop over the million other things they have to do.

Leigh tells her powerful story #HugosLegacy

The workshop got underway: the room was full of buzz and ideas. Participants barely even stopped for refreshments so engrossed were they in the scenarios and discussion. All the scenarios are sourced from real people’s real experiences, which makes them very resonant, relevant, and often emotional – for both negative and positive reasons.

Communication was of course a topic that underpinned many of the discussions. Some of the key points from the table I was on include:

  • The suggestion that doctors could use drawings to help parents understand their baby’s condition. Parents are tired, stressed, and emotional – being in the NNU can feel like you need to gain a medical degree within days, and there is so much terminology to learn. Parents are constantly anxious, and their precious baby being attached to an array of beeping machines that are keeping their baby alive adds another level of terror. Visual aids such as drawings of anatomy can help parents understand – and in turn these drawings can help parents explain their baby’s condition and prognosis to family and friends, too. Doctors shouldn’t worry about their art skills – it’s about the concept rather than it being perfect! Anything that helps parents grasp complicated concepts is positive. There are some worries about notes and the formal medical record and governance, but the consensus was that drawings used as part of a conversation with parents are separate to the formal medical notes.
  • NNU mums often have difficulties receiving the necessary postnatal checks (whether or not they were ill during pregnancy, as I was). NNU mums’ priority is their baby, but their health matters too: they need to be as healthy as possible so they can be there for their baby, whatever the outcome. Our table discussed the concept of a ‘virtual ward’ where NNU mums could have their postnatal checks by identified professionals who crucially would have some training in the needs of NNU mums. Emotional and psychological needs of NNU parents are very often missed.
  • Dads and partners matter! Our table discussed how dads can be left out of the equation. There are times where they have been left alone after a traumatic birth, with blood everywhere and the in the delivery room looking like a scene from a horror film, their wife/partner and baby having been whisked away. The group talked about how in an emergency situation the room will be full of a range of professionals doing what needs to be done. Even if the procedure or equipment is routine, it may seem terrifying to the relative. Often after the emergency all the staff will leave the room with the patient, or go off to attend to other matters. Someone needs to remember to speak to the relative, debrief them, keep them updated, and give them information – not leave them standing panic-stricken.
  • I was heartened, especially after the disjointed nature of my own care, to see the dedication of professionals from various specialties keen to work together to give these mums and families the best possible experience and minimise additional stress.
The game in action on my table
Gill made this fab video of the awesome graphic facilitator Anna rounding up the feedback

In case you don’t have time to watch the whole video, some highlights amongst the many excellent pieces of feedback and pledges are:

  • A method of parents keeping an eye on their baby even when not physically present, eg FaceTime. This would have been so helpful to me when I was in intensive care in the hours before I was able to go and see Hugo, and for both Martin and I when we had to go and rest. Every neonatal parent needs to rest, and some parents need to go to work and/or care for other children too, so making use of technology would help parents feel able to be close to their baby at all times.
  • To see the mother and baby as one unit. The postnatal ward and NNU currently do not communicate well with each other; these links need to improve. In particular, the postnatal ward needs to better recognise the needs of NNU mums with things like expressing breast milk; food, emotional support, and being in the NNU with her baby as much as is possible.
  • Ideas to help parents understand and get involved with their baby’s care as much as possible, for example emoticons on the incubator to signify how the baby is doing.
  • The need for kindness, empathy, and understanding for any parent who is seriously ill during pregnancy, whose baby is cared for in an NNU, or whose baby dies at any stage during pregnancy.
Graphic by Anna Geyer, New Possibilities

After the conclusion of the workshop, we spent a lovely couple of hours in the First Touch garden, soaking up the glorious sunshine. This garden was designed by a NNU dad (whose lovely wife is also the charity’s director) and won a prize at Chelsea. The garden was moved to the front of the hospital for everyone to enjoy.

Flo, me, Catherine, and Gill in the First Touch garden

I would like to say a heartfelt THANK YOU to everyone who made this workshop a reality through organising it, and to everyone who attended. Martin and I cannot change what happened with me, and we cannot bring Hugo back. Helping other families through Hugo’s legacy helps us by knowing that Hugo can never be forgotten, and that his life has had purpose.

St George’s has been brilliant at listening to the feedback I have given them about the experiences of my own care and Hugo’s care, and has already implemented many improvements where necessary. I shall always be grateful to the hospital for saving my life, and for giving us 35 precious days with Hugo. The hospital and the staff who work there will always have a special place in my heart.

And, of course, Nobody’s Patient is about more than me, Martin, and Hugo. It is about ALL families who find themselves in a similar situation. We are working together to help prevent other families falling between the cracks of services, and avoid unnecessary additional stress and upset.

The St George’s and Kingston workshops are part of a pilot that we hope other hospitals nationally will take on board.

Because nobody should feel like they are nobody’s patient.

Leigh Kendall talks about the Nobody’s Patient project, Hugo’s Legacy, and #MatExp

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Keeping the difficult conversations going in the pandemic

by / #MatExp Actions, #MindNBody - holistic care, Baby Loss, Birth Trauma, Continuity of Care, Dignity and respect, Evidence of #MatExp outcomes, Language, Postnatal Care, Pregnancy Complications, The #MatExp Journey, Whose Shoes / Comments Off on 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 …

https://twitter.com/CarolynFahm/status/1235961014929276935

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:

http://headspace-perspective.com/2016/09/26/nobodys-patient-workshop-st-georges-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.


https://twitter.com/pandorabethan/status/1355059211730825217
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.

https://twitter.com/WhoseShoes/status/1186405027285557248

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 …

by / #MindNBody - holistic care, Baby Loss, Continuity of Care, Evidence of #MatExp outcomes, Informed Choice, Language, Pregnancy Complications, The #MatExp Journey, Whose Shoes / Comments Off on 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.

DS – Nicola’s conference 1
DS – Nicola’s conference 2
DS – Nicola’s conference 3 – Verity1
DS – Nicola’s conference 3 – Verity2
DS – Nicola’s conference 3 – Verity3
DS – Nicola’s conference 5
DS – Nicola’s conference 6 – Lynn Murray 1
DS – Nicola’s conference 7 – Lynn Murray 2
DS – Nicola’s conference 8 – Lynn Murray 3
DS – Nicola’s conference 9 – socks
DS – Nicola’s conference 9 Lucienne Cooper – socks
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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.

  • Tedx Leamington Spa, 2019

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

by / Baby Loss, Birth Trauma, Caesarean Sections, Continuity of Care, Dignity and respect, Environment and Facilities, Evidence of #MatExp outcomes, Informed Choice, Language, Postnatal Care, Pregnancy Complications, The #MatExp Journey, Whose Shoes / 10 Comments

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

by / #MatExp Actions, About MatExp, Baby Loss, Birth Trauma, Continuity of Care, Language, Maternity Review, Postnatal Care, Pregnancy Complications, The #MatExp Journey, Whose Shoes / Comments Off on #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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Women’s Voices in #MatExp – Your Doula

by / #MatExp Actions, Continuity of Care, MatExp and Me / 3 Comments

I was asked to do a talk to student midwives at Salford University this month on the topic of “Women’s Voices” in maternity care.  As part of my presentation I included the voices of the midwives who work in maternity care, and a reminder that there are many other women for whom maternity care is their professional, as well as perhaps their personal, experience.  “Women’s Voices” in maternity care should cover the midwives, obstetricians, health visitors, doulas who care for us, as well as the women giving birth.

So I decided to start a series of blog posts on “Women’s Voices in #MatExp” from the point of view of those working in maternity, and this is the second of those.  This is Maddie McMahon’s experience of being a doula.  Thank you so much to Maddie for agreeing to write for us.

You can read the first blog in the series here.  And yes, I will be doing a “Men’s Voices in #MatExp” series too.  Because this campaign is about all voices.

Helen.x

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Maddie McMahon is a doula, doula mentor, doula course leader and breastfeeding counsellor in Cambridge. She is also a member of the board of Doula UK. She supports women using the same hospital she, herself, gave birth in and has been a staunch supporter of that hospital ever since, sitting on the MSLC since 2004.

She is author of ‘Why Doulas Matter’, published by Pinter & Martin in 2015.

Find out more about doulas at http://www.doula.org.uk

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I have been a doula for 13 years and have supported hundreds of women, either before their birthing, during their labours or afterwards. I have been facilitating an initial doula preparation course since 2008 and have been mentoring doulas and intimately involved in the evolution of the doula community in Britain since early on in the history of Doula UK.

In all those years I have learned more about what a doula is not, than what a doula is. Every time I think I might have got a handle on the ‘definition of a doula’, my understanding and perception shifts again. The definitions that do the rounds on the internet can be shallow, to say the least and, at best, undermining and dismissive of the incredible talents and abilities that women bring to this role.

I see all sorts of women being called to serve the mothers of their communities. There are women, like me, who felt a gaping hole or a contrast in how the time of transition into motherhood can feel so very different with and without psycho-social support.

There are women who feel betrayed and let down by their health professionals. They may be fighting birth trauma or PTSD or just a deep sadness.

But there are also mothers joining the community now who have been supported by a doula themselves, feel ecstatic about their birth experience and have been inspired to pay it forward.

There are women who, despite all their protestations of loyalty to their careers, found that motherhood remade them, in a fundamental way, bringing them to a realisation that ‘work’ needs to fit around children, nurture our souls and service our communities if it is to be truly worthwhile.

Some come to the role from an academic direction. They are incredibly bright PhD students or researchers, for example. They are interested in motherhood from a sociological, anthropological, political, psychological or philosophical standpoint. They may be activists or campaigners.

Then there are the Human Rights doulas, the ones interested in things like consent, maternal rights and responsibilities. They may have worked in sex and relationship education, or in women’s advocacy or legal settings.

Related, are the doulas who come to the work through their work with social services, or other support of vulnerable or hard-to-reach groups. I know many doulas who started off working with Birth Companions, working with women in prison, or as Homestart volunteers, in teenage pregnancy units, or are Maternity Support Workers..

And there are those who see birth as merely one step on a female journey, all of which deserve emotional and practical support. They support their community of women through menarche, marriage and divorce, abortion and baby loss, birth, breastfeeding and beyond, right up to menopause and sometimes doula families through the last and ultimate transition – death.. They are the white witches, the humanists and the pagans, the searchers for and creators of ritual and ceremony, the red tent facilitators, the women’s circle founders…

The ‘breastfeeding doulas’, through their voluntary work as breastfeeding counsellors, come to see that the challenges women face initiating and maintaining breastfeeding are often down to wider social and familial pressures. They begin to see these pressures and understand that, much as we can suggest to women to go home, sit and enjoy nursing their newborn, it doesn’t magically get the washing up done. The hour they can spend with women in the breastfeeding clinic doesn’t give them the space and time to explore the social attitudes that invisibly pressurise them to supplement with formula, or sleep train, or help their partner take a more active interest in the baby.

Related are the ‘babywearing doulas’ and the nanny and childminder doulas who, again, have come to the work through close contact with new mothers…who have seen close up that mothers of newborns need a particular type of peer support that the doula ethos perfectly encompasses – that time, and space we can give. That unconditional listening ear. That ability to help a mother access and trust her own mothering instincts. The way a doula supports a mother to do the mothering, and supports the partner/father too to step up and find his skills and abilities as a parent. The doula way of somehow ‘de-medicalising’ motherhood.

And lastly, but certainly not least there are the midwives. Some are retiring. Some have been out of the midwifery loop for a while and are choosing between a return to practice course or the doula route. Others are, quite literally and very sadly, at the end of their tether with the NHS and the constraints it places on midwives and mothers. They often feel like they can’t practice in the way they would so love to; supporting women through the whole journey. Continuity of care, pressure to follow guidelines and management that pays mere lip service to issues like individualised care, consent and compassionate care, have driven them to throw in the towel.

doula

As you can see, many of these women might be bringing baggage to the role. They may well have conscious or unconscious axes to to grind. It is through doing a doula course that we aim to create a safe space to process and contain this baggage, to become conscious of our worldview and how it might create the version we see of the world. We begin to practice ways to bring ourselves back to the women and families we serve, to see the world through their eyes and to therefore support them unconditionally and without judgement. Because it is this lack of an agenda, a lack of micro-managing guidelines and regulations that allow families to relax into our presence and for doulas to become a trusted part of the family.

All experienced doulas know that we are, in some respects, extremely lucky. We revel in the luxury of not having to follow guidelines, merely supported by the philosophy and Code of Conduct that our community has created for itself. We are free to build deep and abiding relationships with women, their partners and their children. We get to listen to her deepest fears and anxieties, support her to find solutions to her practical challenges and gain a deep understanding of her desires for this birth and beyond. We never, ever make the mistake of assuming that women might hold the experience of childbirth above the safety of themselves and their babies. Every working day teaches us that this idea is ludicrous. We see the birth trauma, the family dynamics, the physical and mental challenges that explain a woman’s choices. Really, really close up, it all, always, makes sense.

So, we have this deep, vital knowledge of a woman and why she wants what she wants. We have seen her do her research, read studies, talk to professionals, lay/peer supporters, friends and family. She has worked it through in her mind and her heart. She understands the risks and benefits of the choices she is making. We walk with her on this journey, every step of the way. So, when that journey gets to the point where we might be sharing a space with midwives or obstetricians, we have to seamlessly move from being a team of 2 or 3 and move aside in a loving way to bring these professionals into the circle so that we can create a loving circle around the woman.

That dance can go in a number of different directions, depending on the circumstances. There are some common challenges that can prevent good relations between doulas and staff in the birth room. One of them is possessiveness on the part of the doula. It’s wrong, and egotistical and something that shrivels as she gets more experienced, but I do think we can be forgiven, just a little bit, for thinking that we know better than the maternity staff what the woman wants and needs. It can make us a little defensive when they appear not to have read her birth wishes. It can make us a little grumpy when someone comes into an atmosphere that we have set up according to her wishes and switch on the lights and start talking loudly.

Perhaps we aren’t always super-skilled at handling those kinds of interactions. And perhaps there is more going in underneath those interactions than we doulas are sometimes aware of. If I ask if it’s possible for us to find a floor mat for a labouring woman, and that midwife has just been having a conversation with a colleague about doulas and how we have a ‘natural birth and all costs’ agenda, she may read more into my request than I intended.

If a VBAC couple ask a doula to tell the midwife they don’t want continuous monitoring, how can that be handled? The midwife may not know that they have done their research antenatally and made an informed decision. She may wonder who the hell this doula is, who appears to be talking for the couple. How does a midwife know that these parents aren’t being coerced or persuaded into a course of action without understanding all the possible ramifications? How does that midwife know she will be supported by her colleagues to support this ‘off-piste’ decision?

Cloud 2

Sometimes we are aware that there is an underlying atmosphere in the room based on these myths and misunderstandings about a doula’s role. Most of us have realised that it’s common for midwives to think that all doulas are frustrated, wanna-be midwives. Some think we meet the clients for the first time when they are in labour. Many think we are making an inordinate amount of money. Some see the intimate connection we have with the couple and are forced to contemplate why they, themselves were drawn to birthwork in the first place and how it hasn’t quite turned out the way they longed for.

Other times, when a member of the obstetric staff is in the room, the presence of a doula can wrong-foot and confuddle them no end. They are talking to a couple, counselling them through their options, and they suddenly turn to the anonymous, unnoticed woman in the corner, and ask her what she thinks. Even more confusingly, sometimes she asks a question that sounds surprisingly knowledgeable, or asks the couple if they need anymore information about the risks and benefits, or wonders whether there is an option to do nothing at all. She may suggest a few minutes of alone time to think and usher everyone out of the room. The woman they assumed to be Auntie Doris, is suddenly orchestrating the situation somewhat. Unsettling to say the least. Worrying, perhaps, and possibly anger-inducing.

After the baby is born and a community midwife or Health Visitor visits, it can be hard for her, in the time allowed for the visit, to get a real handle on who this woman is who appears to know her way around the kitchen and hangs around in the same room for the duration of the visit. Can the mother talk freely in front of her? Is the doula giving out of date or wrong baby care or breastfeeding advice? These concerns remain unsaid, but can prevent a real human connection.

We know that sometimes, both doulas and staff bring baggage, myths and ignorance of each other’s roles into the birth room. And most of the time, it is our communication skills, or lack on them, that prevent a deeper affinity and closer working practices developing.

All those talented women, with enormous hearts and the energy to support birth, whether they are clinical or lay, deserve to have the love and support of each other. We all have a massive amount to give.

Doula UK

Doulas are responsible for some of the most positive support networks in recent times: The Positive Birth Movement (PBM), Birthrights, the VBAC and Birth Choices support groups, social media support, breastfeeding support to name but a few. When those support networks work most beautifully is when lay women and midwives work together as equals, loving and respecting the complementary threads we each bring to the work. By working alongside each other, we both learn and grow, for the benefit of the mothers we support.

These communities we build, the rituals we rebirth – these are the special and truly valuable aspects of the doula movement. Perhaps now is the time to validate this grassroots work and build on the models we have set up, that are clearly spectacularly successful! 170 PBM groups in the UK alone. 40,000 followers of Dispelling Breastfeeding Myths on Facebook, 10,000 followers of Birthrights. Community support and advocacy is clearly needed – in fact women are hungry for it. And a lot of this community-building work is about supporting health professionals too. Many doulas work to provide community support to their local student midwives, or welcome community midwives to their mother-support groups. We raise money for our local hospitals, sit on MSLCs, try to raise awareness of the challenges facing maternity services, even march alongside them, with placards raised.

mother-sun-watermarked
From the Mandala Journey

We like to think of the mother, at the centre, as the sun, with her supporters orbiting around her in elliptical trajectories. Sometimes the midwife moves in closer, sometimes the doula or the doctor. We move further away to make space, to allow the mother room to make decisions and find her own answers. We move in closer when she needs physical or emotional support. We recognise each other’s skills and talents and make way for each gift to be bestowed with love and appropriacy.

When we all work more closely together, we see for ourselves how much the doula philosophy of information without agenda, unconditional emotional support and listening without giving advice have a tangible effect on outcomes – not just in birth statistics but on the mother’s state of mind and her emotional and physical ability to mother her infant.

Many doulas know that some of us could learn a little more humbleness from midwives and Obs and understand a little more quite how challenging, heart-breaking and downright soul destroying their work can be sometimes. And perhaps they could learn a little from us – about compassionate listening and keeping care woman-centred, tailored to her personality, preferences and anxieties. They could learn how our depth of relationship with a family may give us insights they don’t have, and not to feel defensive about that, or jealous.

So how can be build better understanding and cooperative working practices?

We see a lot of wonderful stuff going on already: doulas being asked to meet and speak with student midwives, so that they learn about our role from the beginning. It would be good if this were extended to student doctors too.

Some doula preparation courses will allow midwives and student midwives to sit in, for free – to get a taste of the doula community and an in-depth understanding of the many variations of the doula role.

Many doulas sit on MSLCs and Labour Ward Forums, which is a great way for us to share stories and client experiences and to learn more about the workings of the service and the challenges it faces. Mutual empathy is often very effectively built this way. It can work even better when the staff come out to sit in our forums – to visit our pregnancy support, breastfeeding and parenting support groups.

Social media is one way forward. The relationships and mutual respect between doulas and midwives has blossomed since we have begun to get to know each other on Facebook and twitter. We can really help each other – doulas helping the campaign to spread the knowledge of Optimal Cord Clamping springs to mind, or spreading understanding and therefore driving consumer demand for the ‘gentle’ or ‘woman-centred’ caesarean and ‘seeding the microbiome’. We are also able to provide each other with emotional support online and these friendships sometimes benefit mothers in very tangible, ‘I know exactly the right person for you to talk to’ kind of way.

We’d like to see us working together to create more models that provide psycho-social support for more vulnerable and hard-to-reach groups. That 14 year old girl may well have a wonderful specialist midwife to support her, and perhaps the young parents group at the local children’s centre to tap into. But wouldn’t it be wonderful to find out whether any of the local doulas have experience in this area or were young mothers themselves? Sometimes someone coming along who isn’t wearing a badge or a uniform, can make all the difference.

What about those women who ask for elective c-sections with no clinical indication? How many units have specialist counselling services for tokophobia or birth trauma? How many doctors or midwives suggest to women that a bit of peer support might help? Signposting to ‘patient support groups’ can make all the difference, as many women’s accounts of the effect of other mother’s positive stories attest.

There are doulas who have experience of working with women in prison, doulas who are also clinical psychologists, doulas who work exclusively with young mothers, or who work closely with Social Services or Homestart. There are doulas who have a lot of experience building rapport and trust with women who are suffering huge anxiety, and doulas who work with women with particular conditions, like Hyperemesis. There are doulas who specialise in breastfeeding support and who are also Breastfeeding Counsellors or IBCLCs.

Some of us receive direct referrals from maternity staff. Some don’t. Some hospitals have built formal, cooperative models that incorporate doulas, in a voluntary or paid capacity, into the system in some way. Sharing best practice, spreading ideas, building on the successes and working sustainability, mutual knowledge sharing and auditing into the processes seems to us to be the way forward.

Given that doula support appears to have a growing body of evidence to suggest we can increase normal birth rates, minimise cesarean sections and save the NHS money, it is surely time to begin to formalise our partnerships.

So if you are a health professional, why not resolve to find out about the doulas in your area? Perhaps invite them for a cup of tea – they’ll bring the cake.

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Health Visiting & Midwifery – A Partnership

by / Continuity of Care, MatExp and Me, Postnatal Care / 8 Comments

I have great pleasure in sharing with you a guest blog from Health Visiting Lecturer Charlotte Smith and Midwifery Lecturer Neesha Ridley – a great team from UCLan.

Following our wonderfully informative Twitter chat last week, we were asked to contribute to the MatExp blog – what an honour, thank you!

We are writing as a partnership, because this is what we believe health visiting and midwifery should be. To explain, “We” are Neesha and Charlotte, a midwife and health visitor (in that order!) who recently found ourselves united in a number of ways.

First, we are new to our roles as lecturers at the University of Central Lancashire. We enrolled on our teaching course together, thus embarking on our new career journey together – joint working together is enjoyable, time saving, cost effective and efficient, and our shared “newbie” status allows us to express our vulnerabilities and successes openly with each other. (Also, we discover we have a similar sense of humour which is always a bonus!)

Second, our passion for joint working was discovered when Neesha asked Charlotte to come and speak to midwifery students about the role of the health visitor. Neesha had been aware of the importance of MDT working in the childbearing continuum and had organised a succession of guest speakers, designed to give Midwifery students the knowledge and experience of the services they will work alongside in the “real world”. Charlotte leaped at the chance, and went along to the session prepared to outline the role of the health visitor.

What neither of us had been prepared for was the response. Armed with insightful questions and an obvious desire to learn more about their health visiting colleagues, the midwifery students described the need for closer relationships between the two disciplines, and the lack of opportunity in practice to facilitate this.

On feeding this back to the health visiting students, Charlotte had exactly the same response. Why aren’t we being taught with midwives? Why do we not have relationships with our colleagues if we are to work in partnership with them? Why is it that the first time we “properly” meet a midwife is when our training is over? How are we supposed to understand each other’s roles if we learn completely separately?

Our engagement in the Twitter chat around this issue last week confirmed that parents themselves value consistent, seamless support from services in the perinatal period. It also confirmed that at best this experience was inconsistent across the UK.

Just as it is a privilege to be involved in the journey of new parents and the arrival of their baby in the world, so it is equally a privilege to be part of the journey of a new midwife and health visitor into qualification. As we reflected on and evaluated these sessions together, it occurred to us that there were synergies between the two experiences – and it made sense to us that like in every issue in the 1001 critical days, the answer lies in early intervention.

As lecturers, that means introducing the two disciplines in a more facilitative, educational experience during education. In practice, this could be mirrored by a home or clinic joint contact between health visitor, midwife and the family during the antenatal period.

It is well documented that antenatal contacts are significant in improving the health outcomes of women, children and families – we are currently collating the evidence in a paper on exactly this subject. We are very aware that there are organisational and strategic challenges to this proposal, having worked at the coal face for some time and recently, and from listening to our students, and to the views of parents and commissioners. However our third area of unity is this – we have a duty to our professions and to our students, and above all to the children and families who experience our services. We have the privilege of being on a journey with inspirational, committed and dedicated students and we owe it to them to provide the experiences that they identify as facilitating best practice. As a result we are working together not only to influence the curriculum to include structured facilitative relationship building and education between our two professions, but to encourage students to take responsibility for ensuring they maintain this out in the real world.

Not every family would appreciate a joint visit from services – nor might it be economically or organisationally feasible in some cases. But if we educate and practice ourselves as separate, uncommunicative services, families will continue to see us as such. With more conjoined education and more solid relationships from the outset, at least families will have the choice.

Charlotte Smith, RN, HV

Neesha Ridley, RM

TeamWork

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#OxyOct BOOM! What have we all made happen?

by / #MatExp Actions, Continuity of Care, Environment and Facilities, Feeding, Maternity Review, Postnatal Care, The #MatExp Journey / 4 Comments

Leigh Kendall opened this month for #MatExp with a call to action for Oxytocin October. The campaign is always action focused and we are keen to hear from anyone who is doing something to improve maternity experience in the UK, be it something big or something small. Yet we had already put together a number of blog posts with calls to action, back in #FlamingJune. So I decided that my action for this month would be to revisit those blog posts and find out what progress has been made.

Flo Collage

The original blog posts were on these subjects (each subject links to the relevant post):

Having re-shared the posts on Facebook and Twitter I was delighted to see the responses coming in detailing what has changed, what has been started and what is continuing to be done. Take a look!

Perinatal Anxiety

Sarah McMullen of the NCT explained that she invited Emily Slater (MMHA Campaigns Manager) to speak and run a workshop at the NCT national conference – to raise awareness and inspire action. Sarah says that Emily’s plenary talk to 600+ staff, practitioners & volunteers “was incredibly powerful, and we’re meeting to discuss next steps for NCT”. Sarah added “We’ve also submitted two funding applications relating to mental health awareness (thanks to Rosey Wren for support), and have match-funded a PhD studentship with the wonderful Susan Ayres on Birth Trauma, and are supporting another PhD research project on group identity and PTSD”

Midwives on Twitter commented:

Anxiety capture Deirdre

Anxiety capture Jeannine

To read Jeannine and John’s blog post please click here.  “You matter. I care.”

Emotional Wellbeing

Birth Trauma Chat

#MatExp team member Emma Jane Sasaru has been incredibly active over the last few months.  She has launched Unfold Your Wings a place of information and support aiming to raise awareness of Perinatal PTSD, birth trauma, reduce stigma and give sufferers hope.  She has also launched a CoCreation Network community around perinatal mental health.  Emma has then collaborated with #MatExp team member Susanne Remic to bring about a weekly #BirthTraumaChat on Twitter run jointly from Unfold Your Wings and Maternity Matters.

Sue Henry

Also launched this month by West London Mental Health NHS Trust was this fantastic short film about perinatal mental health: https://vimeo.com/143359951 This film has already sparked many useful conversations.

PMH

Continuity of Care

I was speaking to a commissioner from Cheshire this month about the decision to commission OnetoOne Midwives. The company has this month posted an overview of their caseloading model: http://www.onetoonemidwives.org/_news/caseloading-midwifery-an-ever-evolving-model-of-care

In her talk at a recent National Maternity Review event, Baroness Julie Cumberlege made it very clear that the call for continuity of care is being heard by the review team up and down the country. Neighbourhood Midwives led a discussion at the review’s Birth Tank 2 event, and there were a couple of other discussions where options for continuity were also explored.

Support for Midwives

Poem from banksy midwife @JennytheM:

Midwives JennytheM

Midwife Deirdre Munro celebrated the launch of the new Global Village Midwives website this week. The movement is over a year old and Deirdre explains:

GVM capture

global village midwives

Infant Feeding

Lots of news about infant feeding from passionate individuals and voluntary organisations.  On our #MatExp Facebook group Zoe Woodman explained: “In May we got approval from NCT to run a branch funded feeding support group. Started in June with an NCT bfc attending who is also an IBCLC. We are on 3 boundaries in terms of commissioning services so no local peer to peer style support groups were running within 8miles. The only service is an HV clinic once a week and it’s one on one so you have to wait outside the room to be seen. It’s been on our branch aims at our AMM since I’ve been chair (4yrs!) so finally chuffed to see it in action and I will get to use it myself in January for no3! It’s running twice a month currently but hope we can get funding in the future to run weekly. It’s slowly building in terms of attendance. Feedback so far is great!”

Dorking NCT

Claire Czjakowska’s Breastfeeding Advert is coming together and is looking very exciting – watch this space!  Breastfeeding in Trafford launched its Twitter account this month so please follow for local breastfeeding news.  BfN Portsmouth tweeted:

Bf capture

Midwifery students at the University of Worcester have launched a petition around the questionable practices of infant formula companies – follow the hashtag #WeakenTheFormula for more information.

As if this wasn’t enough, this month has seen the launch of the World Breastfeeding Trend Initiative for the UK.  A committed group of individuals from the major breastfeeding voluntary organisations have come together to measure the country’s performance against the WHO Global Strategy for Infant and Young Child Feeding.  Please visit the website for more information on how this project is structured and the indicators against which the UK will be measured.  The project needs lots of input from families and professionals so please follow @wbtiuk on Twitter and find out how you can help.

WBTI capture

Tongue Tie

Doula Zoe Walsh updated us: “We held a North West tongue-tie workshop in Blackpool. It’s now going on the MSLC agenda for Blackpool so that we can discuss local provision and see if it’s meeting the needs of local families.”  

Breastfeeding and Medications

Friend of DIBM helpline

From a personal point of view, I finally got around to becoming a friend of the Drugs in Breastmilk Helpline this summer.  The helpline is absolutely vital for ensuring that women get the correct information about what medications they can use when breastfeeding.  The service is funded by the Breastfeeding Network and the charity once again asked supporters to do a #TeaBreakChallenge this month to help raise donations.

Teabreak challenge

A wonderful #MatExp collaboration has sprung up this month between Angelique Fox, Sarah Baker and Wendy Jones.  These two #MatExp mums who have never met in person have both volunteered to help Wendy to collect data and raise awareness with regards to drugs in breastmilk, particularly where dentists and podiatrists are concerned.  It was discussed on the #MatExp Facebook group that these two healthcare professions are often cited as not having up to date information about breastfeeding and medications so this collaborative project is aiming to tackle that.

Luisa Lyons, the Infant Feeding Coordinator who wrote our original post on this subject, gave us this fantastic update: “Been a busy couple of months. Infant feeding e-learning training for doctors up and running at my unit and both paeds and obstetricians encouraged to complete it. Great support from our obstetric consultant clinics director too. General paed nurses now doing mandatory infant feeding training every year. Been invited to teach general paed doctors face to face. Three GP’s have done the UNICEF 2 days bf management course with us and now writing bf training for GPs in Norfolk. Included info on bf and medications with scenarios to both student nurses and our midwives at keyworker training now, and incorporating into Mt for all maternity staff. Also off topic slightly am putting in a WHO code game to all the above which has generated lots of awareness with student midwives and maternity staff. Need to join DIBM as a friend which I had forgotten to do, so thanks for the heads up.”

Dads & Partners

Mark Williams, co-founder of Dads Matter UK, wrote this blog post for us for #OxyOct, detailing his work and campaigning: https://matexp.org.uk/matexp-and-me/dads-matter/

Men Love and Birth

Midwife Mark Harris launched his book this month, Men, Love and Birth, “the book about being present at birth that your lover wants you to read”.

A Manchester midwife reported positive outcomes around new rules enabling dads & partners to stay over on her unit:

Dads & Partners Mags

When asked how we can best support Dads & Partners, newly elected NCT president Seana Talbot tweeted:

Dads & Partners Seana

Community Outreach Midwife Wendy Warrington tweeted:

Dads & Partners Wendy

I asked Wendy about the work she does with regards to Dads & Partners and she explained “I talk about attachment and being with their baby, skin-to-skin touch. Antenatal and postnatal depression, and fathers’ role in supporting their partner in pregnancy, birth and beyond and how they can do this. I talk about baby cues and the impact of father’s involvement on child’s future emotional and cognitive development.  I have had excellent feedback from parents and when I see them after the birth they say they felt well prepared for feeling and emotions experienced post birth. They love the fact that I talked about it”

Collaboration between Midwives and Health Visitors

Health visitors on the #MatExp Facebook group told us:

“My CPT & I have established 6 weekly meetings with the community midwife and the GP (whose special interest is pregnancy/neonates) to discuss cases”

“We already have that in my team we meet at least once a month with the midwife – it was weekly but we are very busy at the moment (both us and the midwife). She will just knock on our door though and share things – she really came on board with antenatal contacts telling parents to be and signposting those with small children with any worries to us.”

With excellent timing Sharon White, OBE, Professional Officer of the School & Public Health Nurses Association, then tweeted the updated pathway for health visiting and midwifery partnership.

partnership

And as a result of discussing all of this on Twitter, Sheena Byrom has invited me to lead a tweet chat with @WeMidwives and @WeHealthVisitor in November on the subject of midwife and health visitor collaboration.  Watch this space!

Birth Tank

And so much more has been happening in #OxyOct as well! #MatExp was well represented at the NHS Maternity Review’s Birth Tank 2 event in Birmingham – click here for Emma’s round up. I spoke at the launch of the Improving ME maternity review for Wirral, Merseyside, Warrington and West Lancashire – click here for my round up of the morning. Leigh Kendall and Florence Wilcock spread the word at the RCOG Conference on October 16th, and Leigh spoke at the Royal Society of Medicine event on October 20th.

RCOG

Leigh capture

Baby Loss Awareness Week took place this month and many important discussions were had around the subject of grief and loss, something which affects a number of #MatExp campaign members.  Leigh wrote movingly about Standing on the Periphery for #HugosLegacy.

BabyLoss

The RCM has this month launched its State of Maternity Services Report. Emma Jane Sasaru has written a series of three blogs about What Matters in Birth.  Susanne Remic has been raising awareness of IUGR. Michelle Quashie created fantastic word clouds for display in her local maternity unit.  We now have #MatExpHour every Friday created and launched by Louise Parry – click here for her round up of Week 2.  So much going on!

IUGR

I have no doubt there is much much more that I have missed from this round up. There is so much energy and passion in maternity services, and so much desire for change. Whatever it is you are trying to achieve, please join up with #MatExp via Twitter, Facebook or the website and get encouragement and input from like-minded people. Together we are stronger! Feel the Oxytocin flow!

 

Helen Calvert, 2015

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Putting the Heart into Matexp – Heart Values

by / Continuity of Care, Environment and Facilities, Informed Choice, Language, The #MatExp Journey / 2 Comments

Cloud 2

A while ago we decided to pick six words that we felt really summarised Matexp. As with the healthcare six C’s, we very much wanted our values to reflect what we feel is important to a good maternity experience both for families and staff. So with this in mind, the six values we chose were;

Choice

Kindness

Language

Respect

Dignity

Compassion

We set about asking everyone on facebook and twitter what each of the values meant to them.

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Choice

Our first word was choice and we knew when it comes to maternity experiences is so important to families. So what did everyone say about choice?

“Choice to me means having the same services and facilities available to all women. Birth experiences shouldn’t be a postcode lottery.”

“Choice to me means being presented with the correct information so you can make an informed decision. An informed decision is an empowered one.”

“Choice means to me, that all women whether low risk or high risk have access to the same facilities & are given the opportunity to make an informed decision to choose how & where they birth without judgement or pressure even if it is not medically advised.”

“Choice to me means that we give families accurate, unbiased info so they can make a informed choice that is right for them. Then support them in that choice. 

“Listen, really listen to women and let them pour out their heart and get to know what they need to make their birth what is right for them.”

“Choice is about being given all the information you need to make a decision in an unbiased, non-pressurised way.”

“Choice is being told the benefits and risks associated with each option. Choice is being told the benefits and risks with your alternative options (it’s very rare that there is no alternative option).
Choice is being told what happens if you simply do nothing. Choice is knowing how decisions made now will effect your future, I.e.surgery can have implications on future pregnancies. Choice is being able to consider all the information in relation to your own individual situation/ beliefs/ personal history, allowing time for you to make a rational decision. Choice is having balanced open informative discussions feeling that your decisions are supported and not judged. There is no ‘we are just going to’ or ‘we will’, choice is the individual making the decisions.”

We were reminded of nice guidelines for discussing risks and benefits and also CHOICE top tips for maternity care providers.
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Another really interesting point was raised about choice,

“In some circumstances there are no choices, and support needs to be given to those mothers who have had their choices limited or removed.”

Sometimes we may have no choice, in that due to circumstances beyond our control we may have to give birth or accept a situation that is far from the choice we would have made or choices have to be made for the wellbeing of mother and/or baby.

“Following my daughter’s death I have questioned the decisions we made many times wondering if a different choice may have meant she’d lived. In my subsequent pregnancies the feeling of responsibility to make the right choice has at times overwhelmed me and made me very anxious. In lots of ways I’d have preferred to have just been told what was going to happen.” 

It was also raised that choice means accepting the consequences of the choices we make, both as staff and as families. Sometimes this can mean impossible questions that may never be answered.

“Sometimes we are given the illusion of choice. How information is presented is so important. Manipulated or coerced compliance can be made to look like choice. Yet, within maternity services, it’s hard to challenge this. Some caregivers reveal their own opinions in how they phrase information – about whether induction, or cs, or epidurals have risks, for example. This sometimes is presented differently to data about home birth, or vbac, or physiological third stage.”

What did become clear was choice must be Clear, unbiased, informed and not an ‘illusion’. That families didn’t want those responsible for their care to manipulate information or data to coerce a choice that they felt was right. Instead information given should allow for families to make choices that were right for them.

Yes when it came to choice, it was evident how important this was to a good maternity experience.

Kindness

Next we chose kindness. While many things matter during birth, simple acts of kindness can leave lasting impressions and mean so much.

“True kindness is something you give without expectation of any kind of return, not even a thank you. It’s instinctive and comes from the heart and will always benefit another heart. You don’t have to touch, smell, see or hear it but it can awaken your senses and light up your soul. It’s something that both the giver and receiver benefit from.”

“Kindness to me also includes understanding- even if you don’t make sense or or thoughts are irrational. It’s such a confusing time, someone being kind and saying ‘it’s ok I understand’ means the world.”

“Kindness is SO important. I have met many kind midwives and each time a small gesture has been performed it has meant so much. I will never forget the midwife who made me a cup of tea in the small hours after Luka was born. I was literally (emotionally and physically) broken and her kindness fixed me up enough to carry on.”

“In order to be truly kind one needs the time to be kind. How many people are in such a hurry during their day, under too much pressure or thinking of the next job, to afford true kindness? Kindness means kind words but it also means listening, accepting & acting on the kind thoughts. If you see a person in distress, true kindness is actively easing that distress both verbally and practically.”

“Kindness should be in everything we do. We should treat all women with kindness because it’s the small things that matter too. Even the most difficult, hard and situation can be made a little easier when we are shown kindness. People remember kindness and if we truly seek to show kindness it will affect how we care for women. I believe it should be one of our inner values that we keep and not allow the culture to eat away. It costs nothing and yet can have the biggest effects.”

“Kindness is being empathetic and showing the person that you understand how the person is feeling and showing that you care and that you understand.”

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“A quick Google search says “Kindness: the quality of being friendly, generous and  considerate.” Generous is an important one. To be kind, in my opinion, means to give of yourself, to do something that takes a bit of extra effort. To deliver a home cooked meal to a family with a new baby is kind. To offer to take baby for a buggy walk whilst mum has a nap is kind. To make a busy parent a cup of tea is kind. To be generous with your time and your abilities is kind. As for “considerate”, this is the one where language is important. Consider what language you are using and the impact that can have on a person. Speak with kindness, aim to boost a family’s confidence and pride rather than to leave them confused or with feelings of inadequacy. Consider how you would wish to be treated in the same situation. Consider what you know of the family and the impact those things might have on their experience.”

So kindness was a valued part of maternity care and many expressed that kindness had made a real difference to them, however small the act.

It was also raised that it is important to also show kindness to those who care for women.

“As families we must not forget that there are times for us to be kind. To be friendly or at least polite. To drop off a box of chocolates on the ward to say thank you. To donate some items to the hospital. To raise money for units that have cared for our children. If we have been fortunate enough to receive kindness we should remember to pass it back or pass it on.”

Yes Kindness in words and deeds really does make for a good Maternity experience for all.

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Language

Language is something that is discussed a lot in Matexp, and something that is very important to so many. Language has the power to build up, encourage and empower or to tear down, increase doubts and intensify fear. The words we use can leave lasting impressions.

“Language sets the tone for every experience. What is said, translates into what we hear and that affects how we feel. Being told I was 2-3cm and could go home if I wanted to it was ok. But what I heard was, I’m a failure, I’m not progressing, I’m wasting everyone’s time. It didn’t matter what was said to alleviate those worries, they were now engrained. Also, the word normal is a horrible word and should be replaced with various other descriptive words that can resonate more with the mother. Language is communication, understanding and respect.”

“Language is about reducing the distance between provider and parents and creating a collaborative ‘us’ rather than ‘them’. It’s as much about listening as talking, and it’s about choosing words that come from kindness, even if we can’t avoid the risk that they’re not always received that way.”

“It’s not just the words themselves (although these are important!) but also how it’s delivered. Positive phrasing is important we need to ban certain phrases IMO! A big cultural shift around certain stock phrases is needed. It’s about having a two-sided conversation/discussion in relation to decision making ultimately with the individual involved making the decision with all the facts available, I.e. looking directly at a person when talking, hello my name is campaign, doing admin once individual left room rather than spending lots of time looking at screen or doing paperwork etc.”

“For me language and the way we use language can convey so much. It should always be used in a kind way mindful of the person and their situation. Listening is so important as is thinking about the words we use. Our language should convey that we care, are interested, want the best for that person and that we are genuine. It shouldn’t be harsh or critical or brash.”

“If you can’t say anything nice, don’t say anything at all. Don’t fill silence with platitudes. Judgement is implied in so many statements unwittingly uttered when they fall on the ears of person who is suffering / has suffered a trauma. Instead hold a hand, mop a brow, smile, rub a shoulder but be so careful. It’s easy to say “well you are mum now you’ll put your baby first…” wh
en a new mum admits she feels awful, it’s said without malice, as a statement of fact as you see it BUT to the traumatised mummy it can say something different. To me it said “selfish mum, thinking about yourself, crap mum can’t do it” and so I hid how bad I felt and went home with retained placenta and developed sepsis. Think before you speak.”

“Words need to: be positive, encouraging, soothe, be honest, kind, compassionate, open, have empathy, be professional, clear and simple and always respectful. 

 

11886136_1178669428816993_3536750296379664307_oWords without: 
Attitude
Contempt 
Judgement or jargon 
Chat ‘with you’ not ‘to you or above you’
Words should not be dismissive or exclusive 
Words of kindness always…Words are but leaves, deeds are the fruit.” 

“The words we use provide the framework for our thinking. I can tell by the words you use what you think and therefore feel about me. Language is about communicating. We need to develop and agree a shared language to do this well. I don’t really care what your “correct terminology” is unless we have established what it means to us in this relationship. If you are not sure what words to use let’s talk about it. It’s a great way of building trust.”

“Language for me is one aspect of communication and facilitation and if we use it with the aim to facilitate then we are on the right track- this means personalising for atmosphere, experience, individual on a moment by moment level. And we must match the language with all other aspects of communication otherwise it is hard for women to trust in us as the words we use seem at odds with body language etc. Language should be used to empower, inform, educate, provide choice in a non judgemental safe, exploratory non defensive manner. That is the ideal. Consent, not coerce, create chances for inclusion in the care relation ship and take care in the words we choose- as said above we all take things in different ways, but if we are authentic in what we say then that’s a good start.”

Two words in particular that came out as needing to be thrown into room 101 and these were;

“Failure“   and   “incompetent”

 Language is a very important Heart Value. We need to think about the words we use, but also the way those words are used. Language can greatly affect birth because words are so powerful.

Respect

We would think that respect would be an obvious part of a maternity experience, but sadly many women and staff say they feel it is lacking.

“To me respect means an absence of any type of prejudice. It means getting to know the individual, not treating everyone the same. Acknowledging the family’s history, experience and their knowledge and understanding without making assumptions. Respecting the mother’s decisions as much as her body.”

“Respect is valuing people and listening to/valuing their opinions even if they differ from yours. Finding a way to use these collaboratively when making plans. This respect should go both ways too, no point looking for respect if you’re not giving it.”

R … Respect
E … Every one’s
S… Sensitive soul
P… We are just people
E…Eager to do our best
C… Careful how you say things
T … Two way communication needs kindness & respect.

“Due regard to the feelings or rights of others is where respect really hits in #MatExp. We must give due regard to the feelings and rights of families, whatever our personal views or experiences.”

“Avoid harm or interfering with” – another crucial one. Sometimes these feel mutually exclusive in some areas of #MatExp – can we avoid interfering with mothers and babies but still avoid harm? If in doubt, we go back to respecting the feelings or rights of others. And of course we have to consider whether the baby has rights as well.”

“Respect is valuing the person’s point of view and valuing them as a person. What they want, what they feel and this should be discussed with the woman. Actually to define respect is not that easy. I was thinking how the medical profession has commanded respect and still does and it is very aligned to value.’

“Based on my personal experience, respect is knowing and understanding that this is MY body, MY pregnancy and MY baby NOT yours (health practitioners); hence LISTEN to me, give me OBJECTIVE information to help me to make ‘INFORMED’ decisions and FIGHT/ADVOCATE for my wishes. Don’t give me your opinion if I haven’t asked for it and recognise my birth doesn’t fit round your schedule but the other way. And everything everyone has said so far.”

Respect also encompasses staff and the environment they work and care for women in.

“The first part is the respect I hope all birth professionals command, as they are doing an amazing job.”

“Agree to recognise and abide by”. Do all of the guidelines and protocols in your hospital or birthing centre command respect? Do you respect family’s birth plans? Do families respect your recommendations? Can all of these things be married together? Respect encompasses a huge amount of concepts. We all want it and we’re often slow to give it.”

“It also means respecting each other as staff, working as a team and supporting each other’s roles. Respect also included speaking up when we see wrong attitudes or treatment. It also means the respecting of other view points and realising we can all have different perspectives and that’s ok.”

Respect for women, their families, beliefs, choices and needs MATTERS. Staff too need respect for each other and but also afford respect for the amazing job they are doing.

Dignity

How can we respect a woman’s dignity in birth?

“For me dignity means, allowing me to make decisions without health professional over riding them and making you feel as though you’ve said something wrong.”

“For me respect and dignity come hand in hand. Whatever happens if you have treated me with respect I will be able to preserve my dignity. Labour and birth put you on a very vulnerable place and being respected means whatever procedure or conversation takes place involving very intimate issues, I will feel like I am a human being rather than a problem or hinderance, or worse still, like there is something wrong with me, which is my fault, not a result of the circumstances.”

“Dignity is treating me in a way that doesn’t make me feel I’ve outstayed my welcome on the maternity ward.”

“For me, dignity is about human rights, and human rights are about being treated with respect…a pregnant woman or a woman in labour is entitled to her human rights being respected at all times, and she is entitled to be treated with dignity…there!”

“Recognise that respecting privacy, DIGNITY and autonomy is not an addition to care provision, but an integral part of good care…”

“Being spoken to as a competent adult rather than a naughty child, people introducing themselves before touching me, people remembering I am a person not just a uterus on legs.”

In fact this summed Dignity up perfectly.

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Compassion

Last of our Heart Values, but by no means least, is Compassion. Some would argue that compassion alone is the single most important thing we can shown women in a maternity experience, if all care is based on compassion then it will encompass all the other Heart Values.

“To me compassion is seeing a person, realising that they are in need of not just your medical care but your emotional support, kindness and often just to know you actually care. It involves thought, as it can be such little things that make a difference. Think, if this was my daughter or sister how would I want them to be cared for ?”

“Compassion to me is always about time, the extra couple of seconds to smile at someone who looks worried; the couple of minutes to listen to someone who has a question or to ask someone who looks lost on a corridor if they need help; right up to the tasks that take a lot of time.”

Do we see compassion in maternity?

“When I was very sick waiting to have Joseph no one had any time to just sit with me, so the staff got a student midwife to sit and hold my hand. I’ll never forget her kindness. So even if there is no time sometimes there is another way.”

“I was really surprised when I was critically ill. I had a midwife refusing to leave as I was so poorly, she made sure she was my midwife 3 nights in a row. I had so many hugs from so many doctors, midwives, health care assistants I can’t count. I had my 27 weeker in an LNU rather than a Level 3 and they pulled out all stops so we could be cared for close to home.”

“One of my favourite consultants wasn’t even one of mine. Every day he would see me going to Joseph (over ten weeks) and give me a hug and tell me what a lovely mum I was. He was a huge support to me and probably had no idea.”

“For me, it was when one of my consultants told me “your baby *will* be premature”. I started to cry and she put her hand on my arm. It was such a human touch and I was so grateful. But I’m guessing that’s generally not encouraged, whereas for me, it meant so much: it said, I understand and I know this is hard. For me as well, it was when I finally left the hospital and one of my midwives gave me a big hug.”

“It was the array of midwives who looked after me for 10 days talking to me and making me feel almost as if I was just in a second home (ha I was in for 2 weeks which felt like a long time).”

“It was all the consultants who I had come across, always stopping when they saw me to ask how I was and how baby was doing. It was consultants who came to find me the next day to see how I was doing post c sec.I didn’t really expect that, as they must all be very busy people, but they never gave that impression of being in a rush etc.”

“I had so much kindness and compassion when I was in hospital with Joseph, my favourite was the day after Joseph was born, he was ventilated in NICU and I was in my room. I knew I couldn’t see him that day, and had been warned it would be Monday, this was Friday. I quietly crying and the obstetrician reg Charlie came in and said “why are you crying” and I said “I’m fine, I’m hormonal and still very ill and just feeling a bit sorry for myself”. He said “Nonsense, you need to see your baby and I WILL make it happen”. He spent hours organising everything to get me to NICU to see my baby, I will never forget his kindness and him realising that was what I needed, and being prepared to make it happen.”

Can we as families show compassion to staff?

“For staff I believe we should remember the hard work they do and commend them for that. Also be respectful to them. Also compassionate towards each other as a team. Help each other, treat with respect, and value each other’s gifts and abilities. Compassion I truly believe goes a long way when it comes to improving Matexp for all!”

“Immediate thought: always offer your midwife or health visitor a brew when they come to your home, coz they work bloody hard smile emoticon And we know that in the UK tea = compassion.”

“Give thanks and praise where it’s due, people are so quick to complain but never to give thanks. For HCPs, spend 1 moment before each meeting to take a deep breath, rid yourself of other thoughts and allow all focus to be on the couple/Mama you are going to speak with/assist.”

“One of the biggest revelations I’ve had this year, during a fairly turbulent time, is that it is impossible to practice compassion as a HCP towards women day in day out unless you also practice self-compassion.”

“This thread has inspired me. Tonight the children and I are going to bake a big chocolate cake and then tomorrow deliver it to the Labour Ward as a thank you to all the exceptional midwives who work so hard there.”


So those are our six Heart Values. These values are the heart of Matexp, they permeate the actions we make to improve maternity services everywhere.The Values will continue to grow and expand as Matexp does too.

Thank you to everyone who shared their thoughts and ideas with us. We had so many it was impossible to include every single one here, but we hope all the above comments capture the thoughts of women, families and staff.

Matexp is amazing and will make changes for families everywhere. A woman will remember her birth for the rest of her life so lets make sure we do all we can to make her maternity experience one she remembers for all the right reasons, which we can if we remember our Matexp Heart Values. Lets but the heart into Matexp.

 

Emma Sasaru

 

 

 

 

 

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Time to Act for Continuity of Care

by / #MatExp Actions, Baby Loss, Birth Trauma, Continuity of Care, Environment and Facilities, Informed Choice, Postnatal Care, Pregnancy Complications / 1 Comment

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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