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.
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.
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.
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.
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.
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.
I am a big fan of the Obs Pod. It is such a wonderfully simple and yet creative idea. Florence Wilcock, a highly experienced consultant obstetrician, muses and reflects each week on different aspects of maternity care. I don’t think anyone has done this before … and certainly not in Flo’s unique style.
The Obs Pod has become a phenomenal resource. I think it is time for it to be shared very widely on all the main maternity websites. Or perhaps it is too radical, too real ?
Many of the podcasts include really practical information and insights that many pregnant women, new parents and families would benefit from greatly. Other parts will appeal more to healthcare professionals or students looking at career paths – there is something for everyone.
In typical #MatExp style, Flo’s many friends and followers are being drawn in to help.
I wanted to create a more visual way to search by topic and theme and enable people also to dip into Flo’s many blogs and videos, so I made this new Padlet, themed in line with the key categories of the Ockenden review, a bit like a mini website. I was thinking about how best to collate the ‘zesty bits’, which pick out the weekly action points but was beaten to it by Deepa Santosh, leaping forward with a plan to create infographics. How amazing would that be!
That is the nature of the #MatExp community – energy draws in more of the same and people find themselves going the extra mile, innovating to amplify each other’s stories.
As the creator of Whose Shoes, my interest in the Obs Pod is more to understand the world of the NHS, its behind-the-scenes ebbs and flows, the targets, the politics.
So when I saw the title of this weeks episode – ‘Merry-go-round’, I got excited. I thought this was going to be a trip behind the scenes, a look back-stage, so to speak. I was not disappointed. In fact I think this episode takes the podcast series to new heights. It is bold, it is real – it is a tour de force, skilfully combining the voice of experience, observing constant movement that doesn’t necessarily go anywhere, with the joy and potential offered by a constant flow of fresh-faced innovators. I expected it to be challenging; I certainly didn’t expect it to include older monkeys sitting in the trees throwing poo at the upstart younger monkeys below. What a brilliant analogy. 😂
So here are my reflections on the merry-go-round episode and how it resonates with my work:
Reinventing the wheel is a time-honoured tradition, particularly in public services.
As an even older monkey than Flo, and having spent many years working in local government, the image I have regularly seen is more of a concertina. The love of endless reorganisation. Structures moving from national to regional to local and back again, several times. Departments merging and then dividing again. Playing a merry tune possibly, but achieving very little.
The image I often have in my mind about the development of Whose Shoes has Merry-go round elements, but is rather more optimistic. It looks like this:
Things go round in circles but simultaneously build.
Seeds are scattered but often seem to fall on stony ground; they lie dormant but then might be gathered up in the breeze and germinate elsewhere: a different project. Flo refers to this with regard to our ‘Nobody’s Patient’ project. It has been frustrating to see how much support there was for our initial work but then, apart from a few rare exceptions such as the extraordinary work in Liverpool, very little effort to use the resources, even though they are now available in at about 80 NHS trusts. Obviously Covid hasn’t helped any of this, but I am talking pre-Covid. It is as if it is ‘Nobody‘s Project’: consigned to the ’too difficult’ box because it actually requires work between departments and organisations, rather than just sitting neatly within one sphere of command.
I have become a philosophical monkey and generally don’t throw too much poo. I sometimes get ranty, but hopefully not too often because then people switch off – I think they are more likely to be listening when you are generally positive and then … go ballistic from time to time.
Change takes time. Culture change in particular takes time. The most powerful #MatExp Whose Shoes concept is our ‘lemon lightbulbs’ – our belief that people come to their own realisation, they ‘get’ it; and then this influences their behaviour from that day onwards, not just being told something on a training course .
External things can influence to a point, certainly we can create the conditions for lemon lightbulbs to happen. But it is when people see for themselves what needs to change, and hearts and minds are engaged, that real change happens.
Impatient people like Florence, like Helen Calvert, like Joanne Minford who just grab change by the horns and run with it, are the unusual ones; they are very special leaders who drive us all. I am so proud and privileged to work with such amazing people.
Flo and I talk about tipping points (the same now applies to her podcast and what will help it truly take off). I have learnt that tipping points come and go. But the underlying spiral keeps building. That is probably a more sustainable model?
Fast forward to 2021. Apparently, learning from Covid, the NHS has embraced coproduction at the highest levels. The corridors of power, no less. Coproduction is now to be the ‘default way of working’. The way we do things around here. I am on the Coproduction Task and Finish group – Flo’s ‘Merry Go Round’ podcast suggests that this is a very optimistic title, but I will try to be a well-behaved monkey and remain optimistic.
However, I do see a fundamental tension between a) wanting to predetermine the outcomes whilst getting people with lived experience to work with you to achieve them and b) genuinely listening and involving people and valuing the ideas equally at every step of the journey, which by definition might lead to a totally unforeseen outcome. It is exciting, it is scary. It takes a leap of faith. And probably more time than a Task and Finish timeframe – we’ll see!
Flo includes a lovely section about her Random Coffee Trial (RCT) meeting with Andrea Gibbons and talks about the power of both formal and informal networking. Networking, for me, is the most underrated QI methodology, but it is catching on.
Things like RCTs would not have happened 10 years ago. Why, when you are so busy, would you randomly meet up with someone that you had never even heard of?
Shock! Horror! Probe! What if you meet .someone who is more senior or more junior than you – the hierarchy in tHe NHS is very strong, so it is good to see our #NoHierarchyJustPeople mantra gaining ground.
In my Whose Shoes work, I will frequently try and link hospitals and teams and ask if they are already connected? The answer can be defensive. Yes, yes they say – but in practice, it is frequently the Heads of Department who are connected. What about the rest of the team?
It is so energising to find an opposite number in another trust who is struggling with the same challenges as you. You can help each other, you might well become friends – it can be fun. Finding our shared humanity is a key theme that runs through all of our work. It cuts through perceived barriers.
I have often felt that some people in the upper echelons of the NHS love Whose Shoes until they hate it. It can be seen as opening a can of worms. It takes a level of confidence and belief to do true coproduction – to uncover the real issues and find out what people think, and then work together to do something about it. Most of the people I work with are passionate leaders; they get this and we make the magic happen together.
Flo gives a really wonderful shoutout in the podcast to my networking skills:
“Gill Phillips @WhoseShoes, who I do so much of my maternity experience work with, is a wonder at networking. she’s absolutely amazing at building connections, introducing people with ideas that may work together, lending things from one area of her work to another and also networking people up and down the country.We’’ve recently done a couple of workshops on Zoom on continuity of care and we have linked various different hospitals and individuals from different hospitals so they can share ideas on what their approach is and try and test out different ideas together and learn and benefit from that experience.”
I genuinely love connecting people, in fact I can’t stop myself. I worry that I can be a bit of a pain – I see people doing amazing things and know that they will be stronger together. I link them in my tweets and smile like a Cheshire cat when they connect, especially if they go on to meet in person. It is important. It can be life-changing.
As Flo says, I am now looking to use the ‘Nobody’s Patient’ resources with new networks of people who are interested in improving the working relationships between maternity and neonatal care. A lot of serendipity is happening, The right people are coming forward, and it feels good. No merry-go-rounds in sight.
Flo’s podcasts always end with zesty bits. Please listen to her top tips this week on how to avoid going round and round in circles.
Networking to learn and share and NOT keep re-inventing the wheel.
Listen to women and families, particularly flagging up the simple things that can so easily be changed.
Final thought: It was lovely to see the photo of Flo enjoying the merry-go-round. It felt very symbolic. Here I am as a young mum, celebrating my daughter‘s first birthday.
What goes around, as they say, comes around. Keep going. 😉
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!
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
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!
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):
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.