In the shoes of … | Gill’s Mum: “Sunk without trace”

Mum rewriting blogWhen I called in to see Mum, I found her busy; busy trying to sort out her handwritten blog. Cutting and pasting it the old way – by rewriting bits.

It is lovely to see Mum starting to write regularly again and that in itself is significant. Last year, when she had had her accident and was living for several months with me, she had a lot more time on her hands but I could never really persuade her to do very much writing or drawing. She just immersed herself in her books. She was worried about the future – we all were.

Now she is happy in her new Assisted Living accommodation and making more friends and seeing more people than she has done for a very long time, she has the sparkle back in her eye. And this goes with taking a greater interest in life in general and pursuing her various interests and hobbies. Well there’s a surprise! … So look out for some more of her pithy blogs. 😉

NHS Confed logoSeeing the whole person and how things need to join up and offer quality of life rather than just medical fixing, is a key theme of my talk tomorrow on the opening day of the NHS National Confederation Annual Conference, where I am very honoured to be speaking.

So what was Mum writing about so furiously (in more senses than one!)?

“You know that talk you said you’re giving in Liverpool [on urgent care for older people]. Well I have some thoughts of my own…” 

I looked at the opening title of Mum’s blog: “Sunk without trace”.  My heart sank too – I wondered what an earth she had been writing about. The poignancy of the war-time analogy and, as I read it, the fact that that generation of stoical wartime survivors feel neglected made me feel very uncomfortable – and I hope it does you too.

So I invite you to hear from than a 93-year-old, desperately trying to enjoy life and stay HERE (as mum wryly calls her new living situation) and OUT of hospital…

Sunk without trace

NHS - over 70sA front page article in the paper this week asked if there will be a second-class NHS for over-70s, leading to many avoidable deaths.

This is not a new question of course, but it seems that funding is being cut again. Many old people living alone and dependent on carers and nurses coming in every day, or maybe just some days, rely on them for some contact with the outside world and life. Again it all comes down to money and funds are needed.

I am very lucky and living now in an Assisted Living Home (NOT a Care Home). I came in here after an accident made it impossible for me to go on living on my own in my own house. But it is not cheap and probably beyond the means of a lot of people.

This is a lovely place where the residents are interesting to talk to and are good at organising their own amusements such as Scrabble, a quiz, a film night and the occasional tea party. All this keeps the mind active.

Carers [Mum means paid carers] cannot do this of course. They hardly have time to talk at all. Just in and out. There is also less and less contact with the Doctor these days as things have been palmed off on to the practice nurse or someone else. These people are always in a hurry and watching their computer screens.

Hospitals often send people home too soon and if they are kept in they don’t always get looked after as they should be. Then inevitably they come back in, creating a vicious circle.

This latest cutback makes one wonder if anyone really cares about the over-70s – who will obviously be increasing in numbers – or if they think it is an easy way of disposing of them without argument.

Please post any comments – it would be great if you can help Mum understand the power of blogging and that these posts do not just disappear into the ether… 😉


Posted in co-production, compassion, dementia, Gill's Mum, health, housing, mental health, social care, well-being | Tagged , , , , , , , , , , , , , , , , , , | 8 Comments

The #MatExp month of ACTION begins today. Why women everywhere need the Maternity Review Team to engage!

NHS Confed logoJune is not going to be dull…! For me personally, this is a big week – I am looking forward to speaking at the NHS Confederation Annual Conference on Wednesday. The session I am involved in, chaired by Dr. Mark Newbold, is about urgent care of older people. The emphasis of my contribution is around prevention, holistic approaches and joined-up systems, ensuring that life is not over-medicalised – the simple things that make life worth living.

Mum, known on Twitter as @Gills_Mum, is extremely interested in my talk and threatening to write a blog of her own…

Preparing my presentation brings home yet again the parallels and key themes across all areas of my work. Hardly surprisingly really as we are all people; aspirations, hopes and fears and the desire to have control over our own lives do not suddenly change just because we get older.

FlamingJuneToday starts the month with a bang.

Our #MatExp campaign, to improve the maternity experience of women everywhere, goes up a gear.

For anyone who has been twiddling their thumbs and wondering what to do with themselves since the end of the #MatExp alphabet (yes, we know who you are!), you will be delighted to know that June is a month of action!

#MatExp #FlamingJune – we are just waiting for the weather to catch up … although perhaps it is just as well it is a bit cool outside or the energy burning in this remarkable grassroots campaign might just start some forest fires!

Sheena Byrom is an extraordinary woman. As her action for June, she is posting blogs from individuals who have information to offer to the new team set up to conduct a national review of maternity services in England, led by Baroness Julia Cumberlege. We all feel passionately that this new review team needs to engage with the action-focused, inclusive work of what has now become an unstoppable social movement for positive change.

And so it is a huge honour that Sheena invited Florence Wilcock and me, as the initiators of the #MatExp campaign, to write the opening blog and tell everyone what has been happening and why is it so important for these links to be made.

Sheena is publishing our blog today on her site. But for ease you can also read it below. We are all working together in a very strong collaboration and taking the view that the more different channels we can use to spread the word and involve more and more people, the better!


We would like to kick off Sheena’s June blogging series with a strong call for the Maternity Review Team to engage with our fabulous #MatExp grassroots community. We need to build on all the amazing work that has been happening over recent months through this passionate, inclusive group.

So what is #MatExp and how did it come about?   

A lot has been written about this already – for example, Florence’s ‘in my shoes blog’.

Florence and Gill made this short video when, due to the phenomenal grassroots energy it had inspired, #MatExp was included as a major campaign in NHS Change Day, 2015.

Users came forward not only to join the various actions but to initiate and lead them themselves. You can check out the actions here but they cover everything from appropriate language, postnatal support, best practice and experiential learning – including many male obstetricians spending time in the lithotomy position!

Florence is a passionate obstetrician and clinical leader, who was asked by the London Strategic Clinical Network to find ways to improve maternity experience in response to a poor CQC report identifying that six of the seven worst trusts in the country for maternity experience were in London. Florence approached Gill, the creator of Whose Shoes?,  to co-produce some challenging Whose Shoes? maternity scenarios and run a series of workshops, getting users and professionals and all other interested parties – NCT, MSLCs, everyone! – to work together as equals and come up with imaginative solutions.

IMG_8292With support from NHS England, five very successful and fully subscribed workshops were held across London.

Queen’s Hospital session in action

The combination of the face-to-face workshops and the social media network have been extraordinary, with lots of overlaps. For example Helen Calvert and Leigh Kendall, two of the mums now helping lead the campaign, came down to London to join the workshops and they also contributed to the #MatExp NHS 6Cs webinar.

Booklet - MatExp WSThe Whose Shoes? workshops, supported by a full leadership and facilitation toolkit kit developed in partnership with the London SCN and NHS, are now planned at other London hospitals and spreading to other parts of the UK, including a session in Guernsey at the end of June.

There is a lot of cross-fertilisation of ideas between localities and between hospitals, with a strong emphasis on building relationships and collaborations. Each workshop culminates in pledges and a local action plan, formulated by the people at the workshop and encapsulated in a powerful graphic record.

300- 2

Graphic record from our #MatExp Whose Shoes? workshop, held at Kingston Hospital. New Possibilities are the graphic artists.

Inevitably the themes are similar between the different sessions but with a strong local emphasis and most importantly local ownership, energy and leadership.

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It would be easy for the NHS Change Day campaigns to lose momentum after the big day itself, (11 March). #MatExp has done the opposite, continuing to build and bring in new people and actions. #MatExp #now has 110 million Twitter impressions. We have just finished the ‘#MatExp daily alphabet’, a brilliantly simple idea to get people posting each day key issues related to the relevant letter of the alphabet.

This has directly led into the month of action starting today, 1 June!

Helen Calvert set up and ran a survey of health care professionals. She had 150 responses within about 10 days and analysed and reported the results – an extraordinary contribution.

We have a vibrant Facebook group (please apply to join – initiated by fab Helen Calvert @heartmummy) and the brand new website (LAUNCHED TODAY! – huge thanks in particular to Leigh Kendall @leighakendall) set up by the #MatExp team of mums who are incredibly focused, working long hours – all as volunteers. We are all absolutely determined to keep working together to improve maternity experience for women everywhere.

Gill Phillips and Florence Wilcock

There will be LOADS of ideas to help you…
So please get involved.

Posted in community engagement, compassion, dementia, Gill's Mum, health, in my shoes, personalisation, social care, well-being | Tagged , , , , , , , , , | 1 Comment

In the shoes of Rachel Dutta Choudhury… | Raising awareness of dementia at Midland Heart

And so another ‘Dementia Awareness Week’ comes and goes. It is hard to believe that it is three years since I first started to collect and publish ‘in my shoes’ blogs as part of Dementia Awareness Week, 2012.

But to emphasise the message that awareness is something that needs to go on all year round and not just for seven days, I like to post blogs after the ‘official’ week has finished.

Midland Heart IMG_8387I was invited to run some workshops for staff at Midland Heart at their impressive HQ in Birmingham. I was delighted that Ken Howard, my friend and colleague who lives with younger onset dementia and Anna Geyer, my fab graphic facilitator pal, were able to join me. I am always particularly pleased when we get an opportunity to engage with people who don’t always get the chance to think about dementia, and this was a particularly receptive and welcoming group of people.

Rachel Choudhury, part of Midland Heart’s Dementia Strategy Group and Senior Bid Writer, tells the story…

When we first formed the Dementia Strategy group at Midland Heart in 2012, I don’t think any of us knew quite where it would take us. We knew how important it was that we did something, we’d all heard about the ageing population and how people were living longer, and knew that this would inevitably impact on us as a business which, at its core, is about supporting people from all walks of life and at different times within their lives.

For my part, I became interested in dementia several years ago when my grandmother, although never formally diagnosed with dementia, began to forget things. From being the family’s matriarch she became reticent and unsure of what was happening around her, I felt helpless and unsure what to do for the best. Being part of the dementia strategy group has enabled me to support us as an organisation and as individuals to work towards increasing understanding of what there is that we can do to help people live well.

For the past 3 years we’ve used Dementia Awareness Week as a way to raise awareness with our staff, customers and the communities we work in. This year, we wanted to go a step further and not just ask people to attend an event, we wanted people to get involved, and to have meaningful conversations about dementia and also to challenge preconceptions. A few months ago, our operations manager for mental health, Rosemary Doherty, attended a conference and came back telling us about Gill and Ken and how inspiring they had been. We knew that we wanted to work with Gill and Ken, but how?

That’s when we found out about Whose Shoes?  It just fitted with everything we’d been trying to do through our Dementia Strategy and Alliance Action Plan. At previous events,  we knew that the same few faces would turn up, we wanted this year to be different, so we decided to be just a little bit disruptive and not hide the events away in corporate meeting rooms but to hold them out on the open plan office floors. That way we could benefit not only those taking part but also get the message across to the people who carried on working around us.

We’d arranged the Whose Shoes?  sessions for the Tuesday of Dementia Awareness week and planned to hold one session in the morning and one in the afternoon on different floors of our head office in Birmingham. Gill, Ken and Anna from New Possibilities (who was to create some incredible graphic recordings which we could keep after the event) arrived and we set up the space where the first session would take place.

We waited anxiously hoping that people would get involved (I had already had considerable interest from staff so in my sensible head I knew that people were coming but another part of me was worried in case for some reason they didn’t!).

I needn’t have worried  – staff from across our departments, from our housing management team to our legal department, arrived ready and willing to take part.

The next hour flew by,  filled with anecdotes and reflections from everyone involved. Ken spoke to us about his experience and was happy to answer our questions.

By the time of the second session, word had got around the building of how fantastic the first had been!
We duly dragged in extra chairs to accommodate our swelled numbers and began the second session.

As someone lucky enough to have taken part in both sessions it was really interesting to see the different thoughts and emotions which the sessions brought out for people.

No two discussions were the same but for me there was one overriding message which carried across the two:

If we treat each other as individuals and with the care and understanding that we would a friend or family member, we really can’t go far wrong.

Rachel Choudhury & colleagues - IMG_8444

Posted in Blogs, community engagement, compassion, dementia, education, Guest blog, health, housing, mental health, personalisation, well-being | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

In the shoes of Mel Pickup… | CEO, Warrington and Halton NHS Foundation Trust

In May 2012, I thought it would be a good idea to collect and publish some ‘in my shoes’ guest blogs for Dementia Awareness Week. I started it with my own story and then collected all sorts of stories from other people. Like a lot of the stuff I do, I had no idea what I was starting: it ran every day for weeks! There have now been about 150 guest blogs on all sorts of topics, over 100 specific to sharing ideas, good practice or challenges around dementia care and support. The thing they have in common is that they are written by passionate people who have something important to share.

And now it is Dementia Awareness week, 2015. Once again dementia is particularly ‘topical’ – last week I was honoured to be asked to take part in a lively discussion session hosted by the Guardian about ‘integration’. In my days as a family carer for my Mum living with dementia, it was all too easy to fall down the cracks!

As someone who likes things to happen pretty fast, rather than debates that go round endlessly in circles, I sometimes ask myself how much is really changing as these various awareness weeks, conferences and discussion panels come and go.

And then I hear stories that make me feel optimistic, and these are the ones I try to share.

Last month I was a speaker at the ‘Dementia: Quality of Care’ conference’ in Manchester and it was a really interesting line up: a mix of people I know well and people who were new to me. My session was in the afternoon but two stories jumped out at me from the morning presentations.

The first was an update from my friend Suzy Webster, who cares for her Mum living with dementia in a three-generation family household. Suzy is a regular speaker at dementia conferences and one of my absolute favourites: always nervous beforehand wondering exactly what she will say and then always ‘spot on’ because she has a compelling story which she tells from the heart.

Suzy has been a regular contributor to my blog series and also that of her great friend, fellow dementia challenger Sarah Reed. Suzy spoke about her Mum’s impending cataract operation and how she wanted to be there to support her but at the time it was looking as though she would be refused.

Thanks to some extra ‘encouragement’ from people on Twitter, her health board agreed and it makes a very uplifting story, with lots of important learning, told here on Sarah Reed’s fab ‘Age Page’.

The second story is the one which I am delighted to publish here to coincide with the launch today of a wonderful new dementia facility in Warrington: the Forget Me Not unit. I heard about this when Mel Pickup, CEO of Warrington and Halton NHS Foundation Trust, who was also a speaker at the event, gave a wonderful content-rich presentation.


I was particularly taken with the story of Twiddle Muffs (read on!) – such a simple and engaging idea and it looks as though my Mum and her some of her W.I. friends will soon be knitting a few!

 So here is Mel’s story.
I hope you enjoy it as much as I did.

The Rise of the humble Twiddle Muff

Mel Pickup

Mel Pickup

I’ve observed that, a lot of people who become interested in dementia care, do so because they have had a distinctly personal experience of may be a friend, a loved one, partner, parent, someone close to them having been diagnosed and suffering from the effects of dementia. Often it seems that the personal anguish of seeing that ‘significant other’ change over time, as they succumb to the disease and ultimately become lost to them motivates people to do something, indeed, anything. If they can’t halt the disease, or reverse its effects then they look to do something in the present and for the future, something just to make the lot of that person and thousands like them, just a little bit better.

I have to be honest and say that in the beginning that’s not how it was for me, although ironically it would become so a short time later, when my partner’s mum was diagnosed with Alzheimer’s disease. So where did it all begin? Well it all began with one of these…

Picture2This is what we call a Twiddle Muff. There are as many varieties of this as you can care to imagine, similar but different, knitted tubes that become a haven for restless hands, adorned with lots of things to, well, twiddle with. Velcro, baubles, bells beads and buttons, ribbons, zips, different textures, colours all designed to amuse, give focus, provide comfort to a mind that probably would rather be anywhere other than where it actually is.

My Director of Nursing, Karen Dawber brought a Twiddle Muff into my office about two years ago, explaining its role in helping to calm those elderly patients on some of our acute medical and surgical wards who were suffering from delirium. So the age of the Twiddle Muff began. Karen had come across a picture of one when she was searching the internet for jigsaws for our elderly patients. The trouble was to buy them commercially was prohibitively expensive so Karen engaged the services of her mother, an avid and adept knitter who not only was able from just looking at the picture knit one in no time at all, she also wrote a pattern for others to follow.

Knitters everywhere rose to the challenge, a veritable army of knitting nanas, volunteers, our public governors, league of friends all joined the cause. Some knitters weren’t keen on putting on the twiddly bits, so they just knitted, conversely those who weren’t that good at knitting but wanted to help  did so further down the production process attaching the bells, ribbons, etc. The knitters were busy doing what they did best and the twiddlers, well, you get the idea.

So all this  got us thinking. We are an acute hospital, a standard District General Hospital that does, what you might expect a standard District General Hospital to do. We provide secondary care to our population of about 320,000 and like most similar organisations, the majority of our patients are elderly. Increasingly a number of these patients are suffering from some form of cognitive impairment. We were dutifully conducting our Dementia assessments to identify those patients with cognitive problems, and those that were in need were referred to specialist Dementia services provided by our local Mental Health provider, but that didn’t hep in addressing the immediate needs of those patients. They still needed to be in our care for inpatient treatment; maybe they had fallen and had a fractured hip that needed surgery and then rehabilitation to help them walk again, maybe they were suffering from an exacerbation of a long term medical condition, often more than one. So how were we doing as an organisation in catering for not just the physical needs of these patients, not just in providing them with the right treatment to address their acute problems but when we found that they also had cognitive problems, disorientation, loss of memory, confusion, anxiety, what did we do to address these specific needs?

Our staff are caring and compassionate; they always do the best they can but a general medical or surgical ward is a busy and frenetic environment. It is fast paced with a quick turnover of patients and is about as far from conducive to meeting the needs of vulnerable, elderly patients suffering amongst other things, dementia than its possible to be. An unfamiliar, somewhat chaotic and rather unwelcoming environment for those whose cognitive functioning is impaired and one which leaves them wondering why they are there, and not in the familiar surroundings of their own home. We were doing ok, but OK just wasn’t good enough.

Enter Stage left ‘Opportunity’  in the shape of the  Department of Health  Dementia Environment Fund. An amount of capital monies, ring fenced nationally to be bid for by organisations who wished to improve their care environments for patients with dementia. Perfect.

The Twiddle Muff had created a groundswell of interest across the organisation and staff in wards and departments were undertaking their dementia awareness training, conducting screening assessments and trying to go the extra mile within the limitations  of an imperfect environment to better meet the needs of dementia patients.

One nurse’s husband who was a carpenter made an activity board and box and a calendar for the orthopaedic ward where many of their patients were elderly.

Wouldn’t it be great we thought if we were able to have a special, purposely configured ward for our most vulnerable patients, designed and decorated entirely with the purpose of making them more relaxed, less scared, anxious; one where relatives could visit, social activities could be undertaken, where those who were disorientated would have less chance  of getting lost as there would be helpful, bold and easy to understand signage, a bright, colourful unit de-cluttered and de-hospitalised. An oasis of calm in an otherwise busy, busy hospital.

Led by one of our Assistant General Managers in Care of the Elderly, Lisa Hulme and with estates Lead Lee Bushell, we constructed a compelling bid that secured almost £1m to create our Forget Me Not Unit and make our aspirations about delivering Excellent Dementia care a reality.

Checkout some of our before and after photos… 

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Giving our dementia patients and their carers the best possible experience whilst they are in our hospitals has been enhanced immeasurably by our creation of the Forget Me Not Unit but its not just about  the new environment, great though it is. Its a wholesale change in the way care is delivered there and socialising and activities play a large part.

Whether its a string quartet, a ukulele band, a rock choir, or our activities co-ordinator prompting discussions using the memory ball or getting patients to draw and  paint. Even better when the weather allows perhaps sitting in the beautiful garden or maybe even watering the plants.

Picture13 Picture12Hospitals can be daunting, impersonal and unwelcoming places, scary even. Thanks to the humble twiddle muff, where the story began, the desire of our staff, the passion and imagination of our bid team, the support of our Board (all trained Dementia Friends by the way)  the vision of our Clinical Lead Dr Graham Barton  and the continued  commitment of our dedicated clinical team on the FGN Unit, Warrington and Halton Hospitals starts this weeks Dementia Awareness week with the official opening of the Forget Me Not Unit.

We are delighted to welcome Actress Sally Lindsey to mark this fantastic milestone in our Dementia Journey and one year on celebrate with partners, friends and patients and their families who helped make it happen.

What are you doing for Dementia Awareness week?

Posted in Blogs, compassion, dementia, end of life, Guest blog, health, personalisation, well-being | Tagged , , , , , , , , , , , , , , | 3 Comments

A is for Action; B is for Bold; C is for Crazy! The #MatExp ABC has been a bit … D for Dynamic!!

Have you been following the #MatExp journey?
Have you been following the #MatExp ABC?

It has been so exciting and so so full on that I haven’t had time to write a blog about it – and I don’t think anybody else has either! But it has been absolutely compelling, with people waking up early each day to post words that reflect key issues around improving the maternity experience of women, sharing good practice examples, building our inclusive community – and having a lot of fun!

I made a visual story book at the weekend using Steller. I should be able to embed it here but can’t get the code to work so here is the link. It was inspired by a walk in the woods on Saturday and has been very popular. It is published today in the Stellerverse…! (No idea what that means except that I guess people like it!)

I cannot possibly do justice to what has been happening in our #MatExp ABC.

There is something about ideas that my #MatExp ‘partner in crime’ Florence Wilcock has which mean that they ‘go a bit viral’ and turn into something way beyond our wildest expectations.

A very small pilotI should have been warned. The very first phone call I had with Florence resulted in us starting a collaboration that has turned into #MatExp. Florence wrote neatly in her ‘little black book of serious ideas’ that she envisaged just ‘a very small pilot’.

Six months on now, we have run 5 Whose Shoes? workshops across London in partnership with the London Strategic Clinical Network and NHS England, and a Train the Facilitator session attended by people from most of the London hospitals and much further afield.

We are now starting to plan equivalent sessions with creative people who ‘get’ the process and are sufficiently open and transparent to embrace it, in other parts of the country. There is a particularly exciting workshop in Guernsey at the end of next month.

So when Florence got that glint in her eye and said she had been thinking about a #MatExp alphabet – one letter a day; Florence leading with one or two words and people invited to join the conversation… I should have had some idea of what was coming!

We have had contributions from so many people. A deluge of tweets every day, and fantastic learning in terms of things that really matter to women, shared with passion and love – or sometimes out of pure frustration.

I have compiled a cross-section of tweets into a Storify, trying to bring in something from all of the main contributors but it has not been easy – please let me know if I have missed you!

The Storify is just a flavour – for the full story, look on the #MatExp hashtag.

#MatExp is a very small pilot. We know that because Florence wrote it in her book so it is evidence-based. So that makes it true… Hmm.

Conversely we struggle to record everything we are actually doing – because we are too busy doing it. #irony

So click on the link to the Storify to feel the passion, the energy and the camaraderie of our shared purpose in #MatExp – and then join in! 

Z may be the last letter of the alphabet but it is only the beginning of the
#MatExp campaign 😉

With special thanks to my friend Ken Howard, who happens to live with younger onset dementia and breaks  every stereotype in the book,  who very kindly designed a logo for us. No meetings, no prolonged agonies, no massive expense (thinking British Airways here)… just a simple request and a quick ‘JFDI’ response, with three different versions. And everyone loves it. Thank you Ken!

Posted in Blogs, co-production, community engagement, compassion, dementia, in my shoes, maternity, personalisation, social media | Tagged , , , , , , , , , , | 5 Comments

In the shoes of … | Helen Calvert: Mother, Campaigner, Parent Advocate and Facebook Group Lead

Are you following #MatExp? – the Twitter hashtag for our fabulous campaign to improve maternity experience?

Are you following our #MatExp alphabet, initiated by my #MatExp partner in crime, consultant obstetrician Florence Wilcock, known affectionately in our community as ‘FabObs Flo’?

We have been posting one letter per day and tweeting relevant words associated with good practice or things that need to change.

So today, May the 4th, is letter U.     May the Fourth go with you 😉

U is for unusual. A great day to tell you about the unusual and indeed inspirational activities of Helen Calvert, a.k.a @heartmummy.

Day 266It is unusual for a young mum to take it upon herself to design, run, analyse and report on a survey of healthcare professionals. U-u-using Survey Monkey.

Within about 10 days, there were 150 responses from midwives, student midwives, independent midwives, doulas, obstetricians, anaesthetists, antenatal teachers and other birth professionals, offering real insights into blocks and barriers to best practice.

We often include links in blogs but to appreciate and make sense of this story you really need to click on the link to Helen’s survey and read it. It is a truly amazing piece of work and totally in keeping with the JFDI, inclusive, ‘anyone can do anything’ approach we are adopting throughout what is now, thanks to people like Helen and our other fantastic contributors, a social movement rather than just a campaign.

From the beginning, we became aware of Helen as one of the passionate, challenging mums on Twitter. She posted a tweet that perhaps revealed her original preconceptions about NHS staff and stereotypical roles – something Helen would be the first to admit.

We have all learnt so much along the way. Fast forward to a comment Helen made a couple of weeks ago.

I think this honesty and willingness to learn and understand different perspectives has been absolutely phenomenal and has brought us all together is a very strong community of diverse thinkers but with the common aim of improving things for women everywhere. We have worked together, grown together and become a group of friends with shared purpose.

Helen has a very powerful story of her own. Her younger son, David, was born with the congenital heart defect Hypoplastic Left Heart Syndrome. I strongly recommend that you visit her blog to find out more. It is an amazing story.

Helen runs a Facebook Group of about 1600 Mums ‘telling it like it is’ and feeding through real stories which have helped fuel discussions at our Whose Shoes? sessions across London and now spreading wider.   Helen has shared some of these in her powerful blog series, using the #MatExp hashtag and helping to spread awareness. For example, #MatExp – The Good, The Bad and The Unacceptable.

Helen became one of the Mums stepping forward to lead one of the key actions of our #MatExp #NHSChange Day campaign – promoting breastfeeding with Emma-Jane Sasaru.

As you can see, Helen’s story and what drives her are central to #MatExp but the JFDI nature of Helen’s survey of healthcare professionals took things to the next level.
I invited Helen to write the story of what drove her to do this.

Helen was really keen but asked me to come up with a few questions to help her thinking. This is what transpired:

Why did you conduct the #MatExp HCP survey?

I had already used my blog to post a few anonymous birth experiences from mums in my Facebook group, and I’ve got lots more feedback to come on #MatExp, #hospitalbreastfeeding, health visiting…..
I didn’t want to be the parent voice that is always slamming the health service or pointing out its flaws without giving the professionals a chance to reply. I have so much to be grateful to the NHS for myself.

The fact that the feedback I am publishing is anonymous makes mums far more likely to be honest, so I wanted to give birth professionals the same option. As I don’t have a Facebook group for birth professionals, a survey seemed the quickest way to get their views. I had already used Survey Monkey professionally in a previous life so knew it was the tool for the job.

What were you hoping to achieve?

I pretty soon realised it would be a great way to publicise #MatExp so I built in the themes and actions and then I ran it past you and Florence. Flo asked me to tweak it to make sure I was asking people what they personally could actually DO to address issues, in the true spirit of #MatExp.
So I was hoping to get lots of good information for a blog post “from the other side” as it were, plus publicise #MatExp into the bargain.

Were you surprised in any way by what you found out?

Not really – I knew that short staffing and professional tensions would be big themes, and unfortunately I have also come to be aware of the culture of bullying that lurks beneath the surface of the NHS. What was lovely though was the passion of everyone involved in maternity care, everyone gave the impression of genuinely caring about the women they work with, even if they differ in their opinions of how best to care for those women!

How has getting to know more health professionals through our Twitter network changed your perception/ contributed to your mission?

I think you’ve already seen my quote in Andrea Johns’ blog about that 🙂 – quoted above

Your survey was brilliantly JFDI but obviously the result of quite a build up. What helped you feel so empowered?

This is the question I struggle with. Why would anyone NOT feel empowered to do something like that? I was only asking questions after all, I wasn’t even passing comment! I’ve thought about this a lot and I think there are a few elements to this. Firstly, who I am. I have always been happy to communicate with people, I truly believe that the more people talk to each other, and the more they talk across professions, demographics, age groups etc the more can be achieved.

Secondly, the #MatExp community itself. We all chat daily about these issues and we talk on a non-hierarchical basis. Twitter encourages contact straight to the top, out to the sides and down to the bottom. If you’re on Twitter then you’re fair game – I can contact you and tag you in and ask you questions without fear of being told to mind my own business.

Thirdly, my position. I do not work for anybody, I am responsible to no one, and that is a fabulous and fortunate position to be in. It essentially means I can do what I like. This brings me back to my initial thought though. Why would anyone NOT feel empowered? Well I guess they would feel like they couldn’t do these things if they worked for an organisation that created a culture of fear, where you might get “told off” for saying the wrong thing or even for ASKING the wrong thing. If this is the NHS that some people experience then no wonder people start talking about feeling “empowered”. Coz the truth is, I didn’t feel empowered. It just didn’t occur to me that anyone would mind. The NHS belongs to everyone. Of course I should be able to question its staff.

What drives you to get involved so passionately in improving maternity experience?

I guess I see birth stories and birth experiences everyday on my Facebook group and I talk to birth professionals all the time on Twitter so it seems obvious to try to bring the two things together. It’s not my passion, it’s more that I am a conduit for other people’s: birth professionals passionately want things to improve, mothers passionately want to have positive birth experiences, I am just the pinch in the hour glass bringing one side to the other! Everyone wants to tell their story, I just want to bring those stories to a wider audience.

What is your perception of the #MatExp campaign?

The campaign is so successful because it was started by a female obstetrician. Talk about right person, right place, right time! If it was midwife-led, it would be seen as another “fluffy” natural-birth obsessed campaign that everyone would end up arguing about. If led by a male obstetrician it would be seen as over medicalised and anti feminist. Florence Wilcock is ideally placed to bring together women who have given birth and medical professionals because she is both. She is clearly both compassionate and professional, this shines through, so she takes the wind out of the sails of anyone who wants to claim either that obstetricians don’t care or that women aren’t scientifically minded.

This has created an environment where everyone can genuinely have their say. I love to see the obstetricians getting involved, and the independent midwives, and the doulas, and the parents who have their own agendas based on their personal experiences – everyone is piling in and having their say and that is how change happens.

Thank you for coming to the Whose Shoes? ‘Train the Facilitator’ session!

Coming down to London for the ‘Train the facilitator’ workshop was fab because I got to meet so many Twitter pals in person and confirm you’re all as lovely as you seem! It introduced me to the Whose Shoes? game and I could see what a powerful tool that is.

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It also helped me to see that healthcare is not “us” and “them” in terms of patients and medical professionals – there are factions within factions and everyone has their own “team” and anxieties. That’s empowering in itself because you realise that your “team” can just be the people who want change, and that was everyone in that room. So forget professional hierarchies – if you’re on Team Change you’re all part of the same gang 🙂

What encouraged you to take a leadership role in the #MatExp NHS Change Day campaign and in the #MatExp ‘6Cs webinar’?

I didn’t take a leadership role in the Change Day campaign, a leadership role was thrust upon me – Flo forgot to mention our champion roles before putting Emma and I onto the page 😀 :D.  It was, and is, an absolute honour though, I was so flattered and feel really privileged to be involved.
As her NHS Change Day action, Helen is also doing a weekly #FF on Twitter linking together 1 midwife, 1 health visitor, 1 doctor, 1 nurse and 1 parent:

Heartmummy - quote re MatExp session

Helen talked about her experience of participating in the Whose Shoes? ‘Train the Facilitator’ session on the #MatExp 6Cs webinar.

The 6Cs webinar was brilliant too, again it was clearly just a group of people having a giggle, finding our way through the technology together and trying to do something wonderful. No standing on ceremony, no worrying about who was “in charge” or what the “rules” were, just getting on with it. Like friends really. It just feels like a group of friends.

People can be quick to think that nothing is of real value unless it is prescribed by the NHS or part of some specific system or structure.
What would you say to the ‘naysayers’?

The key is constant and inclusive. Twitter enables “constant” as we’re on everyday – the ABC was a brilliant idea, it means there is more involvement than ever. So people can jump in whenever they are available, #MatExp is always there to get involved in, you won’t “miss it” or have to be there on a particular day or at a particular time.

In terms of inclusive, this is down to you and Florence as well. You are not territorial. You let everyone do with it what they will – no one is made to feel they have overstepped the mark, taken it in the wrong direction, done something inappropriate or whatever. You don’t seem to want to reinvent the wheel – if MSLCs are doing good work then let them do it, if midwifery societies are having conferences then great. It’s all part of the wind of change, and you are happy to discuss it all even though it’s not all Whose Shoes? based. I really think this is a massive strength, as it stops silo thinking or the idea that “we” are doing something that is different from what “they” are doing.

I would like to see everything subsumed into #MatExp so that eventually it is just an ongoing national conversation about maternity care.

Which, incidentally, is why the Maternity Review needs to link up with #MatExp. They’re a bit late to the party, but we’ve warmed up the dancefloor for them. 😉


The #MatExp story shows that anybody can do anything and people just need to be passionate and to come forward in their own right. In the true spirit of NHS Change Day, Helen, and so many others, have done fantastic things without asking anyone’s permission. We are constantly finding and supporting other leaders at all levels both within and outside the NHS and building #MatExp as a social movement rather than a top down initiative.

We love the energy of #MatExp. We are proud of the diversity of the group – women and health care proferssionals coming together as equals. The campaign is inclusive, important and yet fun. The #MatExp ABC has been a brilliant example of this. I am hoping to do a bit of a round-up to share some of this but the easiest is just to join in on Twitter.

#MatExp is attracting interest and support from the more ‘formal’ parts of the system and we look forward to linking the knowledge, skills and expertise of the group into the Maternity Review. Exciting times and huge potential to ensure that every woman matters; every baby matters. The campaign is very action focused – both the Whose Shoes? workshops and the social media campaign are leading to real change.

We are looking forward to the forthcoming evaluation of the progress so far and finding as many ways as we can to share the learning.

What can you do to help?

Posted in Blogs, co-production, community engagement, compassion, education, Guest blog, maternity, mental health, personalisation, safeguarding, well-being | Tagged , , , , , , , , , , , , , , | 1 Comment

The rain in Spain, #MatExp ABC, Sherpa Union, whatever next… ???

The last few weeks have seen some interesting developments in all areas of my work… as well as a rather misty walking holiday in Spain…

The #MatExp campaign seems to have taken on a life of its own – fantastic energy and with more and more women coming forward not only to say what needs to change but to take active leadership roles.
Are you following our #MatExp alphabet, spearheaded by Florence Wilcock a.k.a #FabObs Flo, now on Day 7?

Flo and I are also working now to use Whose Shoes? more widely across Kingston Hospital, but that is definitely another story…

There is another new project underway, in partnership with Great Ormond Street Hospital and Common Room using new Whose Shoes? material compiled through some excellent focus groups, to improve communications between Healthcare professionals, children and young people and their parents.

The pilot workshops have now been completed and I thoroughly enjoyed joining the last one today in London and seeing the great conversations. I have promised to write a dedicated blog about this project – but I haven’t said when… 😉

There was an added poignancy due to the sad death of young, talented Adam Bojelian, aka @adsthepoet, a long-term Twitter friend who spoke out so eloquently (by blinking witty insights transcribed by his family) about his experiences of life and of healthcare services. Adam was a fan of our project, regularly tweeting comments and support. Rest in peace, Adam and I hope we can build on your legacy.

I also spent a week in Scotland. I had two very interesting invitations to run Whose Shoes? workshops – one for NHS Education for Scotland and the other to launch the spotlight series for Alzheimer Scotland.

The other three days of my week in Scotland were spent with Ken Howard at the ‘We chose to climb’ international conference in Glasgow.

We were invited to give a TED style presentation there on one of the ‘wee stages’. I think our presentation will be going online soon so I will aim to add it to the blog.

Ken was diagnosed about eight years ago with younger onset dementia and we do a lot of work together raising awareness of dementia and combatting stigma and stereotypes. As part of this, I am particularly thrilled to be able to get Ken involved in more and more non-dementia specific events as this reinforces the removal of labels and recognises that people have a contribution to make wider than any condition or diagnosis.

Ken loved the ‘We Chose to Climb’ conference – probably more than any other event we have been to. It was genuinely inclusive, just people who want to make a difference. Ken summed it up:
“It was the most unconference-like conference ever! The people. The venue. The energy. Fresh ideas. The feeling of community. You could go and talk to anyone, regardless of position and qualifications and be listened to as an equal. This is often kicked out of you by social workers. Ground-breaking conversations. Everyone wanted to be involved with everyone. And there was a fab band !”

I loved it too. It was organised by Charlie Barker-Gavigan, and the fab people at SCIF – the Social Care Ideas Factory – and the whole ethos is very much in harmony with my Whose Shoes? work. We go back a long way as SCIF were one of my earliest champions and have enabled some great work, relationships and opportunities in Scotland, for which I am very grateful.

Ken said “The biggest thing I have taken away from the ‘We Chose to Climb conference’ is language and how it makes everything feel so different. The difference between support and care – I had never really thought about that before. I certainly cared for my parents during the last months of their lives but before that it was more about providing the right support – and that is what I need myself. If I am honest, I am jealous of the level of support/care available in Scotland compared to my experience in England.”

We were privileged to be invited to the meeting on the first night to learn about the new Sherpa Union – a social movement of leadership and empowerment, enabling ‘ordinary people’ to ‘JFDI’ and support each other, building stronger communities and networks for positive change.

Ken was very taken with the idea of the Sherpa – what it is and what it should represent. He promised Charlie he would give it some thought and come up with some key words and images. “If it embodies everything the Sherpa is to the climber, it should be fab”, he said. “It is completely in tune with the ‘peer support’ ideas we have been promoting through the #NHS ChangeDay campaign” (that we launched in 2014).

Ken had some great ideas and we promised to write a blog sharing them. Here they are…

Ken - Sherpa acronym

Ken’s acronym – what can we expect from our Sherpa?

SCIF logo - Ken

Ken using the SCIF logo … a bit creatively!

Ken - diagnosis without support - cliffJPG

How Ken felt being diagnosed with dementia…

Ken - diagnosis with my Sherpa - cliffJPG

“Diagnosis with my Sherpa – a whole new ball game!” – by Ken Howard

 Do you have a Sherpa? Or perhaps you are a Sherpa? Or do you have a reciprocal Sherpa arrangement? I find that Twitter is brilliant at finding Sherpas. Tell us what kind of peer support works for you!

Posted in Blogs, co-production, community engagement, dementia, in my shoes, mental health, personalisation, social care, well-being | Tagged , , , , , , , , , , , , , , | Leave a comment

In the shoes of … | Ken Howard, caring for his terminally ill parents

I recently spent a great week in Scotland. I am hoping to find time to write a blog about this – not least the Sherpa Union (very exciting new development around self-leadership, building networks  and peer support!) and two Whose Shoes? workshops – one for NHS Education for Scotland and one launching the Spotlight series for Alzheimer Scotland.

We chose to climbKen with bagsThe main focus of the week was the ‘We chose to climb’ international conference in Glasgow where Ken Howard and I did a couple of TED-style talks. I should theoretically say that we did a ‘repeated’ talk – but when Ken and I work together it is all a bit off the cuff. The two sessions were ‘similar’. It is much more fun to mix things up a bit. 😉

In our presentation, we talked about our friendship and the reciprocal support we give each other. Ken has a much better sense of direction than me and is also much better at carrying the heavy bags! Living with younger onset dementia, people can have different and very individualised problems. One of the things Ken struggles with is reading and writing so I naturally help him with these, including the practical arrangements for the various speaking assignments and workshops we do together.

Ken told me lots of stories and I promised Ken I would write up some things he wanted to share. We sat together in the foyer of the Grand Central Hotel in Glasgow and Ken told me the simplest, most powerful story – summing up a lot of ‘what is wrong’ with care services and why we do the work that we do…

Ken's Dad

The tale of two beds

Mum had been ill for a long time but she became very poorly whilst I was away at the European Alzheimer’s conference in Glasgow in October, 2014. My family, in my absence, arranged for a hospital bed to be delivered because Mum could no longer get out of bed, wanting to avoid pressure sores and such like.

The bed was delivered. The guy who delivered it told my wife and son that the hospital bed would not go upstairs. It had to go downstairs. Even though there was a through-floor lift.

So my wife and son believed the delivery man and they allowed him to put the bed downstairs in the living room in front of the fire. The living room became Mum’s bedroom. We couldn’t put the fire on because there was no other space for the bed. Dad, who refused to leave Mum’s side, then camped on the sofa. For the next six weeks, he slept on the sofa under duvets – not good for an 89-year-old!

All care including the commode, intimate washing etc took place in front of everyone. Mum, who was always reserved in nature, lost her dignity as she was washed down in the living room in front of everyone else. She became more depressed and I’m sure it hastened her demise.

When the bed was in the lounge, there was a crash mat next to it in case Mum fell out of bed. Apparently side-bars for the bed were deemed to be too risky as people can get trapped in them. Nobody considered Dad’s needs and he regularly tripped on the crash mat.

It seems that a risk assessment is a case of covering someone’s back, not working out how well something will actually work  for the whole family.

I had believed the story that the bed wouldn’t fit in the lift … until I saw it dismantled when it was taken away. I didn’t realise that it came to bits!

A few short weeks later Dad became critically ill. When he was released from hospital, I had arranged for him to have a hospital bed delivered along with all the other aids needed to help him to cope at home and for us to cope with him. I refused to allow them to discharge him from hospital until we had a safe environment for him. A friend was helping me and told me that phrases such as “safe discharge” and “safe environment” were the things that tick the boxes. She had also told me that once my parents had left hospital, we would get no more support other than what had been arranged so it was important to arrange everything while Dad was still in hospital.

So the same guy came to deliver the bed. I knew it was the same guy as his opening remark was “Here again, is it? I came here before.” Again he announced that he had a hospital bed to deliver and insisted that it wouldn’t go upstairs.

“Unless you can make it go upstairs, please take it away. I’m not having my Dad cared for downstairs and if he hasn’t got a hospital bed he can’t have a safe discharge from hospital.” So the man then realised that he could put the bed in the lift and take it upstairs and it took him five minutes. So my Dad had a hospital bed in the bedroom which had been prepared for him – with his own TV, and rise-recliner chair and space for us to sit with him or for him to be on his own. The rest of the family had use of the living room and Dad had his own room. He was never paraded naked in front of the household. He retained his dignity to the end of his life. We could carry him onto the commode in the privacy of his own room. The lift allowed him to join the family in the lounge – with the fire on.

This all happened through the winter. In my Mum’s case it had a huge impact on a precious life. So I ask the question: Who is responsible for the decision about where the bed goes?

  • Is it the social worker for not asking where the bed should go or offering any choice?
  • Is it the delivery driver who wants to get rid of it and get out quick?
  • Or is it our fault for allowing ourselves to be bullied?

Posted in Blogs, compassion, dementia, end of life, Guest blog, health, housing, mental health, personalisation, safeguarding, well-being | Tagged , , , , , , , , , , , , , , , , , | 5 Comments

In the shoes of … | Maria Booker, Mum of 2 in pursuit of empowered women in control of their maternity journey

Today’s guest blog feels a bit like the TV show ‘Room 101’ in which celebrities discuss their pet hates and try to persuade the host to consign them to oblivion in Room 101.

Maria Booker brings a slightly different angle to Dr Kate Granger’s brilliant ‘Hello my name is’ campaign – we would love to have your views on this, Kate! Indeed it may well be that there has already been much debate about this and we have missed it…

We have seen name badges with #hellomynameis Mr Surname. It seems somewhat strange that doctors want to be Dr or Mr etc whereas the CEO or medical director is generally known by their first name… 

Anyway, Florence Wilcock and I love the fact that our #MatExp campaign is sparking new conversations or applying them to new areas and particularly that people are feeling motivated to write blogs and take action to challenge accepted practice and bring about positive change. Please post comments and tell us what you think…

maria booker

Maria Booker

As part of the #MatExp campaign for NHS Change Day there have been some brilliant conversations about some commonly used jargon and how this makes women feel (see Jen Phillips’ blog ). Language is so important in any arena of care but none more so that maternity. We still talk about doctors and midwives delivering babies but the reality is that for the most part, babies are grown, nurtured and delivered by women. The evidence is clear. If we can build women up to feel confident and empowered then better birth outcomes follow.  If we are serious about empowering women to take control of their maternity care, and working alongside them to maximise the wellbeing of the family unit, there is no place for status, and that is why I have made a NHS Change Day pledge to encourage doctors and all NHS staff who don’t already, to drop their titles. The picture your name and role create is just perfect- the frame is unnecessary.

TitleOn the rare occasion I get called Mrs Booker I feel as if someone is holding me at arms-length, being formal, deferential. And if someone introduces themselves as Mr or Mrs, I am immediately transported back to being at school. It’s no coincidence that these titles go hand in hand with the expectation of obedience which means for those of us who don’t work in a classroom, or a warzone, the use of such titles is pretty rare. I am no stranger to hierarchy having spent a decade in the corridors of Whitehall.  But even as Private Secretary to a junior Minister, I called him by his first name. The Secretary of State was referred to by her first name. The many politicians, captains of industry, regulators, campaigners, who passed through introduced themselves by name – never Mr or Mrs. I don’t often hold the civil service up as a model of progress but the days when you deferred to your boss using Mr (generally it was Mr) were long gone even when I joined.  And yet in the medical profession this custom remains entrenched.

So why does it matter? It matters because the way doctors introduce themselves lays the foundations for the doctor/patient relationship before another word has been spoken. And once those have been laid, it’s hard to start again.

A few years ago I met with a consultant obstetrician to discuss whether I could have a normal birth following a caesarean (known as a VBAC). I did get an introduction. The midwives and secretaries referred to my appointment with Mr Somebody. The consultant introduced himself as Mr Somebody and then went on to tell me what my birth would be like – I would need to be continuously monitored, the water birth I was hoping for would not be possible. It was clear that he was not expecting a discussion. I asked some technicalities about how long overdue I would be “allowed” to go before being induced whilst suppressing my internal scream of “WHAT IF I DON’T LIKE THE PLAN?”.

Would the conversation have gone differently if the consultant had given me his first name? Probably not. But it would have set a tone- a more equal relationship, a hint of teamwork, the possibility of compromise. In the end I had a water birth at home with the help of independent midwives (against accepted guidelines I should add). That meeting had sapped my confidence that I would be listened to, respected, or taken seriously. Maybe, just maybe, if it had started differently I would have found the confidence to find a different ending.

Because Mr or Mrs says to me – I have authority and you don’t, I’m in charge round here, you need to respect my knowledge and experience, don’t get too close.

Giving your first name says to me – I’m a human too – although I know a lot more about the medical side of this, you know things I don’t know – your  values, what’s important to you and together we’ll find a way through. I know that there are many wonderful doctors working in maternity care who treat women with the respect and compassion they deserve, many of whom have already ditched their titles, and some of whom just won’t have thought about the impression a title creates.

For me what’s been so refreshingly different about the #MatExp campaign is the constructive, non-judgemental way which it has drawn together a wide range of people in a spirit of understanding and shared purpose. This pledge is not intended to create a stick to bash doctors with – one of the privileges of seeing the #MatExp experience unfold is to learn much more about what it’s like to be an obstetrician.  But it is intended to shine a light on the impact of these tiny words. Letting go of these handful of letters might mean a woman asking a question she might not have asked, exploring an avenue she thought was shut off and having an experience of birth that might have been denied to her – that’s the prize.

Kate Granger’s  #hellomynameis campaign has done an amazing job of raising awareness throughout the NHS of the importance of a very simple yet significant act- introducing yourself to a patient. This NHS Change Day I would ask doctors in all fields in the #MatExp spirit of understanding to drop your title and let all your much valued knowledge and skill do the talking.

Maria is passionate about women’s experience of maternity care. She is currently the UK General Manager of Maternity Neighbourhood which makes a digital maternity health record which women can access, contribute to, and use to message midwives at any time. Prior to that Maria lead the development of Which? Birth Choice for ‘Which?’
The website was developed in collaboration with BirthChoiceUK to bring together everything expectant parents need to know to decide where to give birth and present it in a user friendly way. Maria’s interest in maternity stemmed from her own experience of having two children and then going on to Chair her local NCT branch and represent users on her local Maternity Services Liaison Committee.


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NHS Change day #MatExp Lithotomy Challenge – A blog for Mother’s Day

A Mother’s Day special !  Florence Wilcock, my ‘partner in crime’ on the #MatExp project has already written a very popular blog, writing as a mother who happens also to be an obstetrician – or perhaps vice versa. Who knows?  People are so keen to put everything and everyone in boxes – and Flo and I and so many more are desperate to throw the boxes away!
MatExp necklace cUnless of course they are pretty little boxes like the one I received yesterday with this beautiful Mother’s Day gift (complete with little shoe !)  Thank you Flo – that is SO lovely. 

Look out for us wearing our matching necklaces (Flo has one too) at some interesting forthcoming events… !

Well, on Wednesday it was NHS Change Day and obviously a big highlight of our #MatExp campaign – indeed it got mentioned in the Guardian as one of the top 10 campaigns!
I wrote a blog about what we were planning to do and we had a brilliant time together with Flo’s colleagues at Kingston Hospital.

The hospital was buzzing with different activities, including us doing a Whose Shoes? taster session with the Executive Management team and another in the antenatal clinic.
It was a real honour that Dr Helen Bevan and colleagues from the NHS Horizons Team dropped in to see what we were up to at Kingston and do some filming as part of the 12 hour Changeathon, which hopefully we will be able to share with you shortly. Meanwhile, the photos give a taster of our day…

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Fab images by Carrie Lewis, New Possibilities
Fab images by Carrie Lewis, New Possibilities

But Florence ensured that her roles as obstetrician and mother blurred a bit more (and took many of her colleagues by surprise) when she did something truly wonderful in terms of making people think, really think about the experience of the women they are caring for. She walked in their shoes – which, on this occasion,  involved taking off her shoes…

It is brilliant that Flo has taken the time and trouble to reflect in such detail and share the learning…

Lithotomy challenge graphic

Graphic by Carrie Lewis, New Possibilities

Florence Wilcock writes: For NHS change day I wanted something that made a statement that said “#MatExp has arrived, take notice, we are improving maternity experience, get involved!” I couldn’t quite think of the right action until I saw a twitter exchange with Damian Roland back in December and watched a video where he described his spinal board challenge from NHS Change day, 2014. I had a light bulb moment thinking what would be the maternity equivalent? Lithotomy!

Lithotomy is when we put a woman’s legs up in stirrup; sometimes this can be essential for an assisted birth with forceps or ventouse (suction cup) or if stitching is required. But sometimes we use lithotomy position for normal birth or when stitches are minimal.
Changing times - castor oil2In our #MatExp Whose Shoes? workshops, my favourite card is one based on Gill Phillips’ Mum (now aged 93) being made to take castor oil, despite telling the midwife it would make her sick. And it did. The card asks what is common practice now that will similarly seem wrong or odd in the future: the unanimous answer given at Kingston was lithotomy.

I started to think about whether we use lithotomy more than we should and wondered what does it feel like? Although I have two daughters, they were both born by emergency Caesarean so I do not have personal experience of lithotomy although I know some of my midwifery and consultant colleagues already do. It seemed the perfect challenge. I chose to do try it for one hour as that is a quite realistic time that a woman might be in that position, sometimes it can be less, but sometimes it can be far longer.

I decided to wear a hospital gown and some running shorts as it didn’t feel quite right to do it in normal clothes. The first thing I learnt was that the hospital gown was stiff and itchy, I couldn’t get it to do up properly without assistance and when I had finally tied it I sat down to discover it felt as if I was being strangled by the neck line so had to loosen it off immediately. I adjusted the back of the bed but found it quite hard to swivel round & reach the buttons to do so. We put on a fetal heart monitor which just felt like a normal waistband, a blood pressure cuff and stuck an IV line on my arm. We also used a doll to give me a bump. I know not all women will have all these attachments but many will. During this time Tom, who was going to follow me with the challenge, commented that I looked anxious from my body language before I had even begun and it was true I felt quite apprehensive with all these people running around being aware I was about to be totally in their power as it were.

Flo 1We were finally ready for ‘legs up’! The first thing I discovered with a slight shock was that the stirrups were very cold which I hadn’t expected at all. The other observation was that the people started adjusting my legs without asking me. I thought one leg was going to fall off as the stirrup wasn’t tightly fixed enough and I was in a slightly twisted position which I asked them to adjust. Once that was done I felt reasonably comfortable and relaxed. They took my blood pressure with an automated cuff which was surprisingly painful. I decided to have a breech baby and we took a few photos.

Twenty five minutes in we decided it was time to take the bottom of the bed off which we would do for an assisted birth. I felt immediately more precariously positioned and vulnerable like I might fall off of the bed. The midwives put my legs higher and the bed much higher off the ground which was the right position for delivery without causing them back problems. This felt quite odd to be high up in the air or as one midwife put it ‘face to vagina’ so that she could see what she was doing at eye level! I definitely could not have got down from there unaided especially not when contracting and in pain. A midwife walked into the room with the door & curtain open and I realised I could see all the way down the corridor which meant everyone in the corridor could potentially see me. Obviously this was a simulation but it did emphasise to me even more the importance of closing the door & curtain behind you to maintain privacy.

A series of people then came to talk to me. Our chief executive Kate Grimes popped in for a chat and asked if I was willing for a film crew to come in to which I agreed.  By this point my bottom (sacrum) was getting pretty sore & I had neck ache. I was feeling fairly uncomfortable. My abdomen felt quite compressed and I thought if I was a woman in labour having to push it would probably make me feel quite nauseous.

I was prepared to be filmed and photographed but it was interesting that a number of people walked in and out to look without talking to me. Helen and the presenter introduced themselves to me but the camera man did not and did a series of sound checks over me and proceeded to film without even speaking to me. I am sure it was an oversight but it gave me an amazing sense of being dehumanised and re-emphasised the importance of #hellomynameis.

Flo - Helen & camera crewIn the middle of this Kate Greenstock, our MSLC co-chair arrived. Kate is a doula and came straight to me and asked if I would like a foot massage. Although I thought I was fine, as soon as she asked me I realised actually that I wasn’t fine and here was a person who wasn’t laughing or making a spectacle of me but who actually cared about how I felt. That isn’t to say all the wonderful midwives didn’t but at that moment I felt like Kate and I understood one another and that this was tough and she was ‘on my side’ as it were here to support me.

She gave me a foot massage which was immediately relaxing. I have always understood the importance of support in labour but felt that women could get that from our wonderful midwives and struggled to understand why they wanted a doula too. This experience gave me some inkling of why in some situations a midwife might be focusing on other things and a doula might be able to focus on how the woman is feeling and that alone.

My hour challenge was ticking by and for a short time after the film crew the room emptied out and I was left almost alone. I felt slightly abandoned after such a crowd before and realised if the midwives didn’t come back I was rather stranded in an undignified position. It is not unusual after an assisted delivery for many people to come in and then gradually disappear leaving me as the obstetrician to suture on my own, the midwife popping in and out to get things so in a way this behaviour seemed quite apt.

The midwives returned with a nice plastic baby so that I could have #skintoskin and then my hour was up. The end of the bed was put back in place with the bed rocking as they pushed the parts together and then finally they brought my legs down and it was over.

So what was the impact of me undertaking the lithotomy challenge?

My action has certainly got others thinking and talking. I started tweeting about it in the weeks before change day and challenged a few colleagues.  I’m greatly indebted to Professor Jim Thornton who was the first to accept and kicked off a whole week ahead of NHS Change Day.

I know of at least twelve others who have undertaken the challenge and five more who have promised to. The challenges are spread across 10 organisations so I am hoping for a ripple of conversations as a result. Even those that say ‘no’ learn something from asking themselves the question.

An obvious action as a result is for staff to think about trying to avoid lithotomy altogether. There are a multitude of options for positions and care in labour that we can employ. The Better Births initiative is an ideal example of a resource any midwife can access. Environment is also all important: birthing pools, stools, mats, balls are something tangible people can change. Antenatal education and preparation, both NHS and with our partners in the community, is also vital.

For us obstetricians there are certainly situations in which lithotomy is invaluable and necessary however this challenge has definitely made me think about the consequences of the length of time and how to keep it to a minimum as the position became much more uncomfortable after half an hour. Sometime in the pressure of work, helpful midwives get women ready for us in position before we enter the room and I had not given much thought to the impact of additional time or someone new entering the room when you are already in this position. The careful use of sheets or drapes to minimise exposure was also a topic for discussion.

In conclusion my hope with my challenge is that in each Trust conversations will happen that change practice and via networks and social media good practice will spread. I hope it will have the ‘butterfly effect’ where one small change in one place will result in large differences later.

So Happy Mother’s Day from #MatExp …

and remember it is never  too late to take part!

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Huge thanks to everyone taking part in the lithotomy challenge – a scrolling gallery of people prepared to go the extra mile. Leaders who are learning so much by walking in the shoes of people in their care.

UPDATE: And here is the Kingston Hospital #NHSChangeDay film – powerful interviews with Kate Grimes and Florence Wilcock during their experiential challenges.
And a ‘wee flash’ of Whose Shoes? at 7 mins 30!

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