It has been an exciting time. Out of the blue, I was named as a #WildCard as part of the #HSJ100 2021 👀, alongside some big names like Marcus Rashford, Gareth Southgate, Greta Thunberg and one or two friends, in particular fab Clenton Farquharson MBE.
I am a bit ambivalent about all the different awards, but the idea of being a *wild card* appeals to me! 😀 I had seen that the HSJ had put a call out on Twitter to ask people to name some ‘not usual suspects’ whom the new NHS CEO should listen to. 👂🏼
Who should the new NHS England chief executive – due to be appointed in the next few weeks – be listening to as they get started?
HSJ wants to highlight people outside the usual health and government hierarchies who the new boss would do well to learn from and listen to.
They should offer a different perspective to those likely to get access. They may be unusually clear thinking, be good at “big systems”, or a patient articulating their experience. Could be from another field altogether, or a health leader from overseas who we ought to emulate.
Anyway, I think that was the catalyst to be named in #HSJ100, 20 Wild Cards, so thank you very much.
More importantly, I started to think about how to make the maximum impact from this opportunity.
As the creator of ‘Whose Shoes’, I see myself very much a catalyst for change, bringing in lots of different voices. So I started to put out a challenge on social media, asking other people what they would like to tell the new CEO of the NHS when he/she is appointed.
Well, I love bouncing ideas with you #FabObs Flo, can’t wait for our special event next week! 😉
And that gave me an idea… 🍋💡🍋 How about a special episode of #TheObsPod:
I was thrilled when my #MatExp partner-in-crime, Florence Wilcock immediately took up the challenge and produced a special ‘Wild Card’ episode in her engaging the Obs Pod podcast series.
Flo speaks from the heart, as a highly experienced and caring obstetrician, and it is very powerful. You can listen to her thoughts here:
There were also some interesting conversations and ideas on Twitter and LinkedIn. So many people have wonderful contributions to make, but don’t always have a voice.
Perhaps I should start a podcast series myself, just chatting to different people.
Just as Flo’s podcast has developed into a fantastic bank of material for anyone interested in maternity care, I thought perhaps I could aim to do something similar by crowdsourcing ideas about buillding the future by chatting to lots of interesting people … and enjoy myself in the process!
I have a fantastic network of passionate people in so many different areas of health and social care and indeed the community – all of us. I started to make a list of possible contributors and I was not short of ideas! And there will be many more people out there who will emerge during the series itself – this is the organic nature of listening and networking.
Thank you Florence for your #JFDI response to my initial call out. I love the way you just dived in and did this and I’m hoping you will be an early guest on my ‘Whose Shoes #Wildcard’ podcast series!
I am thrilled that my friend Dr Farzana Hussain has agreed to be the first contributor.
OK. So that has nailed it. Would absolutely LOVE you to be the OPENING speaker on my @HSJnews#WildCard#WhoseShoes podcast series, Farzana. 🍋 What would YOU like to tell the new CEO of the NHS? 🤔 🍋💡🍋 👂🏼 pic.twitter.com/i5oQNHIEpP
This is very exciting. Farzana was named herself in the inaugural list of HSJ wild cards in 2020, as well as being named as ‘GP of the year’, She has been a fantastic role model, so it feels a bit like passing on the baton.
Farzana is the real deal. I can’t think of anyone you would rather have as your GP. She listens and she cares deeply. Common sense, finding imaginative ways to step into the shoes of others, speaking truth to power and truly seeking to understand what makes people tick. I have been in awe of Farzana’s innovative work during the Covid pandemic – immediately coming up with virtual consultations, drive-through clinics, proactive calls to understand why her patients might not initially be taking the Covid vaccine… and so much more!
We included some of the early examples in our ‘Learning from Covid19′ best practice #VirtualWhoseShoes series in the early months of the pandemic and Farzana also told some of these stories briefly on a video she kindly made for our advent series, dressed as a very glamorous Father / Mother Christmas!
So, I’d love to hear your thoughts and encouragement – and hopefully start to build an audience to do justice to the wonderful speakers I am hoping to attract …!!
Your help, suggestions and feedback will be very gratefully received.
Haha, the gif of the day! 😂 Loving how the #Wildcard people are gathering. And very chuffed to be seen as someone who tries to help others be heard. Everyone should feel valued And that the ‘powers that be’ will listen to them. #NoHierarchyJustPeople#WMTY 💜 pic.twitter.com/jYjSEMrZfa
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.
Images by New Possibilities
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. 😉
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.
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.
Catherine MacLennan, another bereaved mum, was similarly the catalyst for our innovative work around second trimester loss, which is sadly an area of care that is missed out from many ‘pathways’.
I am always in awe of how many bereaved parents use their grief to create something so positive.
We had the privilege of welcoming about 15 passionate bereaved parents/ couples in Gloucestershire, reaching out to help others. Many of them spoke about special people who had helped them along the way – “life savers” is a word frequently used. It reminded me of Catherine’s ‘special people’ poem.
Catherine’s ‘Special People poem’ reaching paramedics at London Ambulance Service
Something that I found particularly moving in our Gloucestershire event, was a mother talking about how, when her baby was sadly stillborn, she had made small matching dolls, one to place inside the child’s coffin and one to hang on the Christmas tree as a symbol of hope and for any subsequent children to enjoy and get to know and love their sibling.
I love the connections. 💜 The potential connections. 💜
I think my ‘goosebumps moment’ was the bereaved mum who’d made paired dolls. One for the baby’s coffin; one for perpetuity on the 🎄
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.
Thanks Dawn. It was a great planning meeting yesterday. Attention to detail in selecting scenarios & poems that match to the in-depth gap analysis Nikki did. These sessions are all about careful planning, true listening and working together towards real outcomes. 👍🏼 #WhoseShoespic.twitter.com/7gEdH7gp0Y
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
These are the visuals from the record today, recognising that support for dads and partners is different from the support for mothers #matexppic.twitter.com/avp0FAyj9N
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.
Brilliant illustrations, really encompassing all the emotions and struggles surrounding baby loss
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.
I am so grateful to have been a part of this today and excited to get to work on our pledges 💖
An amazing event today, such diverse conversations giving fantastically rich discussions and commitment to continue improving services for families who experienced bereavement through #babyloss#matexp#whoseshoespic.twitter.com/8hxYDvThcD
Kerri thank you and please join us to follow up on all our pledges we are all determined @daniellerees9@NikkiDobson1 to take forward the pledges and quality improvements from today
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!
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.
— Heidi Crowter-Living the dream (@HeidiCrowter95) January 6, 2021
Definitely @HeidiCrowter95 – young woman with Down syndrome, not only living the dream but advocating like a pro! Fighting for equality and squeezing in a wedding in between lockdowns! pic.twitter.com/3pFwfs1oYW
— Down Syndrome UK | Positive About Down Syndrome (@PositiveaboutDS) December 23, 2020
… 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
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.
Wow, this is wonderful. One of the most #JFDI changes imaginable – a mum attending a #WhoseShoes session at Barts in the morning and delivering a session in a training course at Barts in the afternoon! Well done indeed Colette! #MatExp#impactpic.twitter.com/eQhni7Jntj
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 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!
Indeed Gill! The @DanceSyndrome folks have been an inspiration throughout this pandemic. They played a huge part in @smallgoodstuff 's The Buzz too 😀👏👏👏👏🧡🧡🧡
Small people doing good stuff. I love the enabling work of @CommCats. They always help bring about amazing things in communities. The Buzz: a great collection of videos to help people stay active, engaged & inspired during #Covid19! pic.twitter.com/UaNHPGVCgt
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.
@CommCats Jen and I love you! Jen is so fulfilled just now – #downsyndrome – so what?! 💃is all that matters!
Celebrating #inclusion#diversity#dance and so much more besides. Would love to make these connections real. So great when every person feels welcomed and wanted.
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.
Ethics in maternity, including screening for Down's Syndrome, is always going to be a very difficult topic to discuss. Yet Flo handles it with grace, compassion, understanding & non-judgement. I wish every maternity practitioner & every parent-to-be could hear this. Thank you https://t.co/4mDp7jkDbL
Would urge all to listen & consider if their views/attitudes are influenced by last century or contemporary view of #Downsyndrome Thanks Flo 4 addressing this topic – attitudes & the law desperately need overhauling to ensure women can make truly informed choices knowing reality https://t.co/f3cJwHjVi7
— Down Syndrome UK | Positive About Down Syndrome (@PositiveaboutDS) January 9, 2021
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!
