I am an avid follower of #TheObsPod and I was excited when #FabObs Florence Wilcock, who tweets as @FWmaternity, said she was producing an episode around disability in pregnancy. You can listen to it here: Episode 56: The Obs Pod – Maternity Experience (matexp.org.uk)
I found it really beautiful and it gave rise to so many thoughts. Wheelchair-user Emily Yates and her partner CJ decide whether they want to be parents and what it would mean for them. Practicality and perception.
I enjoyed it so much, it prompted me to write a few reflections:
What amazing parents these two would be – their strong relationship shines through. I love the humour, the depth of thought about the stuff that matters without overthinking the stuff that doesn’t; the sheer humanity
What a great way to explore a topic in depth, looking at it from different perspectives. Being real. What if Emily ended up as a single parent? What does it mean, as a disabled mother, to have a baby or for a child to be raised by a mum in a wheelchair?
Finding out how modern equipment can help. How brilliant that you can have a plastic baby delivered in a box and find out whether you can physically look after it – a bit like a Tamagotchi!
Societal attitudes. Stereotypes. The need to break stereotypes.
The Dad’s perspective. CJ is really keen to become a Dad, but will he ever be able to get out of the house again? But then don’t ALL would-be parents worry about how much their freedom will be curtailed.
Making clear that it is not all about worries that arise disability, but verbalising the worries all new parents have – how will I feel about the house being covered with poo and milk?
Availability of information. Why is there so little information to support disabled parents? What can we do about that? I’m sure some of our #MatExp community can make some good contributions here?
What an amazing series this BBC Sounds is – how lovely to dip into such a well-made piece of active research and get insight into other people’s lives.
Proud that our very own #FabObs Flo was the consultant obstetrician helping the couple on their way. So important to explore realistically what would be involved medically and find ways to support people to live their lives to the full and fulfil their dreams.
A really uplifting experience listening to this, and I wish Emily and CJ well with whatever life brings to them.
We recently ran a virtual Whose Shoes? event around baby loss, in conjunction with Gloucestershire maternity team and Sands bereavement charity. It was originally planned as the second of a 2-part event to use Whose Shoes to test out the ‘National Bereavement Care Pathway’ (NBCP) and identify any gaps.
‘Event 1’ went ahead on 6 March 2020, in Colchester …
The Colchester event was extremely powerful, with a lot of buzz in the room, hugs, good support and some powerful outcomes. That sadly feels like a different world now, doesn’t it?
Anna Geyer, Director of New Possibilities, made this film of the event:
‘Event 2’ in Gloucestershire was meant to follow a couple of weeks later, but we all know what happened in the meantime. Covid struck and it took us 10 months to work our way through how to run an event of this importance and this sensitivity online.
I will fast forward and bypass how we developed #VirtualWhoseShoes, and all the twists and turns along the way …
Suffice to say that it was thanks to the dedication and perseverance of everybody that we managed to make the event happen. Dawn Morrall, Assistant Director of Midwifery & Nursing and the Clinical Improvement Lead of the South West Clinical Network, checked out the emerging virtual experience, and insisted that it should remain as a Whose Shoes event.
Dawn is one of the people who really ‘gets’ Whose Shoes. Dawn also has a great track record of following up on the quality improvement actions in order to get the most from the events … so we love working with the team in Gloucestershire!
I am hoping Dawn will write a case study about the outcomes from our previous events – and from this one in due course!
Online sessions take a huge amount of preparation. We had a lot of supporters, both in the room and following us on Twitter. #FabObs Flo Wilcock, consultant obstetrician, and Marc Harder had been the people who originally initiated the events:
Despite detailed preparation over many months, we didn’t really know how many people to expect, or the mix of people. Healthcare professionals are obviously so busy at the moment, with the pressures on the NHS due to COVID; people are feeling isolated during lockdown and missing the normal support available from family and friends. They are also ‘Zoomed out’, as the pandemic drags on.
It is hard for any new parents / parents-to-be at the moment, let alone people experiencing bereavement, so it was wonderful that Kerri and many others were keen to join. THANK YOU!
I was amazed. We had about 60 people on the call. It was wonderful and very moving to see so many bereaved parents joining us, alongside healthcare professionals, chaplains, people from SANDS, volunteers, medical photographers, a GP, a funeral director, and many more…
We started off with a gentle activity – colouring! It helps people learn Zoom skills that we then use later in the session to annotate certain screens. But it also feels relaxed, encourages people to turn on their mics and speak, adds a bit of colour and creativity and helps set the right tone for the session.
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.
Leigh inspired the work we did around neonatal care, one of the three key themes of #NobodysPatient.
Here is Leigh’s very moving blog, reflecting on our #NobodysPatient workshop at St George’s hospital:
Catherine MacLennan, another bereaved mum, was similarly the catalyst for our innovative work around second trimester loss, which is sadly an area of care that is missed out from many ‘pathways’.
I am always in awe of how many bereaved parents use their grief to create something so positive.
We had the privilege of welcoming about 15 passionate bereaved parents/ couples in Gloucestershire, reaching out to help others. Many of them spoke about special people who had helped them along the way – “life savers” is a word frequently used. It reminded me of Catherine’s ‘special people’ poem.
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.
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.
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.
Wonderful staff from the South-West neonatal teams came together to learn more about baby loss and its impact, and Nadia courageously shared her lived experience story, helping people understand the special grief and complexity of losing one or more babies in multiple pregnancy. I recommend this training highly to all involved in perinatal care.
I also joined a webinar hosted by Kathy Fray in New Zealand, with guest speaker Joann O’Leary talking with huge insight about pregnancy after loss, another complex ‘taboo’ topic which is not discussed enough.
I am being asked about some of the ‘end of life care’ / palliative care work we have done in other areas – eg with London Ambulance Service. I am having some interesting conversations with People from NHS England / Improvement at the moment about how all of this work could be better supported.
I am currently supporting a wonderful doctor, Nikki Crowley, to implement Family Integrated Care in a London hospital; the #NobodysPatient resources will be central to our collaboration. Networking is proving super important here, as some wonderful people come together to help.
And … latest news … we are currently looking at innovative ways to help people follow up Whose Shoes pledges, if things get ‘stuck’ in any way, using #LiberatingStructures. With thanks to Lyse Edwards. Contact me @WhoseShoes if you want to know more.
So, lots happening. But it is only be happening because PEOPLE are stepping forward to make a difference, which is hugely rewatding.
I will leave you with a fantastic quote from Nadia Peake, the bereaved mum of twin baby Raif, who stole the show at the South West Neonatal event.
“The situation is bad. The experience doesn’t have to be”
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!
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.
… 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.
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 …
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.
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.
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 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
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.
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!
We are living in extraordinary times. Hardly any of us have ever faced the likes of this before. We all react to the stress and anxiety in different ways as we make huge adjustments to our daily life.
I want to reassure women, we’ve got your back. Each person in maternity services is working hard to try and keep mothers and babies safe. We need to care for women with all the normal medical conditions, complications, anxieties and social situations. Then we must multiply that by two to think of how we would manage all the same problems if the woman had Covid19. Then we must add in what if she is in isolation, what if her partner or her child has it? Then we must add to the equation: staff being ill, in isolation or unable to work due to pregnancy or a medical condition.
We have new procedures for almost everything; protective equipment is not a trivial affair, we must learn how to don and doff correctly to protect ourselves and the women we care for. We need distinct levels of protection for different circumstances. We have turned our rota on its head; some of us have been deployed to other wards and areas. We now have the rota, the backup rota and the back up back up rota, all to be certain we will have the people you need to care for you. We have national and local guidance changing almost daily. We are fortunate that the RCOG & RCM are updating guidance frequently – this is helpful for us & the women we serve. https://www.rcog.org.uk/en/guidelines-research-services/guidelines/coronavirus-pregnancy/covid-19-virus-infection-and-pregnancy/
So when we have to make difficult choices that we never imagined would be needed, please be tolerant. We have to plan for every situation meticulously, not only within our own service but within the health economy as a whole and we have to take decisions at an accelerated rate, the likes of which I have never experienced. We bear in mind not only the impact on individual women and the maternity population but also the surrounding community.
When a woman comes into hospital, she will be greeted with care and compassion and kindness. We know this is a challenging time to birth a baby and become a parent. We may be wearing masks and gloves, but we are there behind them with hearts and minds to do the very best we can. We are fighting to protect the things we know are important. We are encouraging you to come for your scans and appointments that are essential and adapting to contact you by phone when less important to see you in person.
We are one of the few parts of the organisation maintaining a degree of normal outpatient care. Pregnancy and birth can’t be put on hold. Many of us have set up specific Covid pregnancy helplines to answer your questions and are working hard with local Maternity Voices Partnerships to give women the information they need.
We know for some, life at home is increasingly difficult. School, childcare, work has all been thrown in the air let alone worries about other family members, food supplies and money. As NHS Maternity workers, we are giving all that we can give. When we talked at work about the NHS #ClapForCarers, most of us missed it. We were too tired, working or busy feeding our families. Yesterday in my clinic, a few women ‘gave back’. Just a simple ‘how are you?’, or ’thank you for being here’ is enough. We don’t need you to clap us, we just need you with us, together to get through this.
As more and more people join the fabulous #MatExp community, they may not know the origins of #MatExp, co-founded by Florence Wilcock and Gill Phillips in 2014.
People may not realise that we published the original Whose Shoes? scenarios and poems at the beginning of 2015, before maternity hit the national spotlight and the national maternity review was announced.
The resources were used at all the national maternity review listening events and helped enrich and shape the conversations that led to ‘Better Births’.
People ask for ‘evidence’ of what #MatExp Whose Shoes? has achieved…
And so we bring you our #MatExp 12 Days of Christmas, published in the lead up to Christmas 2018, summarising some of the biggest achievements and outcomes to date. We have helped serve as catalysts. The big achievements have only happened because fantastic people have come together and found that individually we can all make a difference, but TOGETHER we can ‘be the change’.
Each of these ‘things that #MatExp brought us’ has a story behind it; sometimes a big one. Who knows, one day we might get round to writing THAT book. But in the meantime, this is all we have time for. So if you want to know more, please join #MatExp. And most importantly, keep adding to the story. These small or large individual contributions are how positive change will keep happening.
Remember those heart values – all of us working together to improve maternity care. Thank you!
#MindNBody And, new for 2019, our #MindNBody campaign – using new crowdsourced Whose Shoes? scenarios and poems to spark crucial conversations around perinatal mental health. A holistic approach, looking to improve the experiences of women and families, including prevention and early intervention. The resources were launched at the Royal College of Obstetricians and Gynaecologists in December 2018 and a diverse mix of people involved in the project made a two minute video for the days of Advent, which are compiled into a single film here:
In December 2018, we were proud to launch our new #MindNBody Whose Shoes? resources – the third in our series of major #MatExp projects to improve maternity care and help people to focus on a holistic ‘Mind N Body’ approach to maternity experience.
The whole thing is crowdsourced, with scenarios and poems contributed about a very large wide range of issues, and from all perspectives.
At the last minute, we got the idea to crowdsource videos from some of the people who’d been involved, as a #MindNBodyAdvent series. Take a look at the hashtag on Twitter . It was very organic and came together better than I dared hope , with lots of fantastic people volunteering to join in .
Here we have collected them into a single video and I hope they give you a feel of the depth and variety of the project.
The new resources are currently going out to over 50 NHS trusts and we hope will support conversations to improve experiences of women and families everywhere .
A Happy New Year to all – hoping 2019 will be another year of positive, action-focused #MatExp change and looking forward to working with everyone to get the most out of the brand new material.
This post has been written for the #MatExp campaign by Claire Flower, Clinical Specialist Music Therapist and Joint Team Lead for the Chelsea and Westminster Hospital NHS Foundation Trust. Our thanks to Claire and her team for their support for #MatExp.
‘Music While You Wait’ is the working title of a project we’re recently been running in maternity care at Chelsea and Westminster Hospital, London.
My name is Claire Flower, and I jointly lead the music therapy service here at Chelsea and Westminster hospital. We have had a large children’s music therapy service for many years in the Trust, but recently we’ve had specific funding to explore how music is used by, and can be helpful for, women through pregnancy and birth. The project title – ‘Music While you Wait’ – has seemed fitting, both because of pregnancy itself being a waiting game, but also because the project has been based in the antenatal waiting areas of the hospital.
In conversations with midwives, doctors, pregnant women and partners one of the themes which kept popping up was that the experience of attending, or working in, an antenatal clinic can sometimes be extremely stressful. People told me that at busy times the clinics are often full and noisy, some women may have children with them which brings its own pressures, some may have lengthy waits to be seen, and some may be anxious about being there for all kinds of reasons. As one woman said to me, ‘not everyone here is happy’.
There was a real, shared interest in exploring together how music might be one way of making the experience of the clinic better for everyone, lowering stress levels, reducing anxiety, and giving different opportunities for social contact and connection.
We agreed that I would attend 6 different clinics, offering live music, as well as talking with women, partners and staff about music in pregnancy and beyond. And so we started – wheeling an electric piano into the waiting area, playing a range of music, talking, and being prepared to see what unfolded.
Over the weeks, I kept a journal, describing events in each clinic, and thinking about them in preparing for the next one. Looking back at them now, they give a flavour of some of the moments which characterised the project.
For example, how the piano music was received by women coming to the clinic…..
‘One couple arrive, and as they walk in she looks across and says quite loudly across the room, ‘oh it’s you!’. There’s surprise from both of them that the music is live, they’d assumed it was the radio. ‘There’s just something about having the person, you know?’ she said.
On the same morning….
‘Another woman smiles frequently at me as I play and she waits. In fact, she moves from sitting with her back to the piano, to facing me and sitting closer. As I stop to respond to someone’s comment, she agrees that it’s lovely, and says she was just texting her sister to say how lovely it is to sit and listen to. Makes me think that music is doing its work of rippling outwards to unexpected places!’
In this busy clinic, women often come with children – quite a challenge if there’s a lengthy wait. When one woman arrives with two energetic young children, looking quite exhausted, I wonder how I might be able to help with some music for them….
‘I come away from the piano, and bring out some small instruments for us to use, crouching down with them to sing. Mum joins in, and the children begin to sing and dance, moving rhythmically to the music. Looking around, I see other women smiling at the children, or even moving a little to the music…. After a good play, we agree to put the instruments away (I’m really not sure how the sound levels will have been for the poor midwife in the room nearest to our impromptu band!), and somebody in the room suggests it’s ‘time for a lullaby’, I return to the piano, and we have a gentle rendition of Twinkle Twinkle, one of the children ‘twinkling’ at the top of the keyboard.’
And then there was the morning when this happened…..
‘As I’m playing, one woman, quite heavily pregnant, walks in, looks towards me smiling, and walks towards me. She approaches so confidently, and with such a smile that I wonder whether we know each other, or that I’ve forgotten meeting her here previously…..’
What unfolded from that point was one of the highlights of the project for me, but she’s best placed to tell you about it herself….
“I am a professional violinist. In July 2016 I was almost 9 months pregnant with my second child and was suffering from gestational diabetes. So every Tuesday until my C section I had to go to C&W and be assessed by a diabetes specialist nurse or consultant. I was very anxious and tired beyond belief. On top of that, more often than not there was a rather long wait for the appointment.
Needless to say I wasn’t looking forward to Tuesday…until one day when I walked in and heard music. There was soft classical music coming from a speaker or two (I thought for a few seconds until I spotted the real source, at the back of the room). SOMEONE (not something!) was playing that lovely music. How amazing, and how very rare…
I walked straight towards her with no doubt in mind of what I was going to do. I had to come here, bring my violin and play with her, even if it was just for a few minutes! I had been pregnant and breastfeeding for three years by then and playing the violin had LOST ITS place in my life. I did miss it desperately and said it. To my absolute joy Claire invited me to bring some music as well the following Tuesday, before my appointment and play with her for almost an hour. We discussed the music in detail (not everything suits so I took her advice and offered to also bring something a little different to see if and how it might work).
I counted the days until my next appointment, even managed to practice a little for the first time in years, searched for my beloved but long forgotten music and didn’t think of anything else other than how wonderful it will be to join Claire and play for everyone there who was going through the same hard times as I was. It was also the first time my daughter listened to me play the violin in public. I felt like the luckiest and most privileged woman on earth (no exaggeration here!).”
For everyone who was lucky enough to be working, or coming to the clinic on the day when this happened, it was a magical moment. It certainly ticked the box of seeing how music might make the antenatal clinic experience better for everyone there.
We’re writing the project up now, using, among other things, the comments which were written and drawn for us by women, children, staff, and partners in each session.
And we’re discussing what we do with it next, which might mean developing it further in the waiting areas, as well as thinking about how it might translate to the wards.
As Viki Girton, Lead Midwife for Antenatal Clinics says ‘Music While You Wait helped to create a relaxing environment for staff and patients… having more would be fabulous to improve maternity experiences and patient satisfaction here’.
I love being a music therapist, but being able to step into the maternity world and work with such a great group of women, staff and families has been a new pleasure. We’re really excited to have conversations with anyone interested in where we take this next, and how music therapy might play a part in #MatExp!