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Our NHS FAB Stuff ‘Whose Shoes’ collection! :)

by / #MatExp Actions, About MatExp, Evidence of #MatExp outcomes, Maternity Review, The #MatExp Journey, Whose Shoes / Comments Off on Our NHS FAB Stuff ‘Whose Shoes’ collection! :)

Huge thanks to the fab(!) ‘FAB NHS Stuff’ team for setting up a dedicated ‘Whose Shoes’ collection to collate and share some of the FAB stuff that we do, including many #MatExp examples.

The collection is growing! Have a browse – you are bound to find lots of easily transferable ideas that will work for you, not least in our various booklets of case studies.

https://fabnhsstuff.net/fab-collections/matexp

Please then let us know if the outcomes from YOUR Whose Shoes’ project are missing.

Dr Terri Porrett and the rest of the FAB team are very keen to collect and share ... so, don’t be shy!!!

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#MatExp Whose Shoes – RCOG case study on coproduction

by / About MatExp, Evidence of #MatExp outcomes, Nobody's Patient, The #MatExp Journey, Whose Shoes / Comments Off on #MatExp Whose Shoes – RCOG case study on coproduction

We are delighted that the RCOG has included a case study about our ‘Whose Shoes’ work in maternity and neonatal services in their recent Workforce Report 2022.
Please see Page 68.

RCOG Case study, Feb 2022 – Whose Shoes – coproduction with women and families. #MatExp

RCOG workforce-report-july-2022-updateDownload
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Nobody’s Patient workshop

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

Originally posted September 26, 2016 by Leigh Kendall 

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

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

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

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

My beautiful Hugo

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

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

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

Leigh tells her powerful story #HugosLegacy

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

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

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

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

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

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

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

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

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

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

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

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

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

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#MatExp heart values & Covid19

by / #MindNBody - holistic care, Birth Trauma, Dignity and respect, Environment and Facilities, Pregnancy Complications, The #MatExp Journey / Comments Off on #MatExp heart values & Covid19

A blog post from #MatExp co-founder Florence Wilcock

We are living in extraordinary times. Hardly any of us have ever faced the likes of this before. We all react to the stress and anxiety in different ways as we make huge adjustments to our daily life.

I want to reassure women, we’ve got your back. Each person in maternity services is working hard to try and keep mothers and babies safe. We need to care for women with all the normal medical conditions, complications, anxieties and social situations. Then we must multiply that by two to think of how we would manage all the same problems if the woman had Covid19. Then we must add in what if she is in isolation, what if her partner or her child has it? Then we must add to the equation: staff being ill, in isolation or unable to work due to pregnancy or a medical condition.

We have new procedures for almost everything; protective equipment is not a trivial affair, we must learn how to don and doff correctly to protect ourselves and the women we care for. We need distinct levels of protection for different circumstances. We have turned our rota on its head; some of us have been deployed to other wards and areas. We now have the rota, the backup rota and the back up back up rota, all to be certain we will have the people you need to care for you. We have national and local guidance changing almost daily. We are fortunate that the RCOG & RCM are updating guidance frequently – this is helpful for us & the women we serve. https://www.rcog.org.uk/en/guidelines-research-services/guidelines/coronavirus-pregnancy/covid-19-virus-infection-and-pregnancy/

So when we have to make difficult choices that we never imagined would be needed, please be tolerant. We have to plan for every situation meticulously, not only within our own service but within the health economy as a whole and we have to take decisions at an accelerated rate, the likes of which I have never experienced. We bear in mind not only the impact on individual women and the maternity population but also the surrounding community.

When a woman comes into hospital, she will be greeted with care and compassion and kindness. We know this is a challenging time to birth a baby and become a parent. We may be wearing masks and gloves, but we are there behind them with hearts and minds to do the very best we can. We are fighting to protect the things we know are important. We are encouraging you to come for your scans and appointments that are essential and adapting to contact you by phone when less important to see you in person.

We are one of the few parts of the organisation maintaining a degree of normal outpatient care. Pregnancy and birth can’t be put on hold. Many of us have set up specific Covid pregnancy helplines to answer your questions and are working hard with local Maternity Voices Partnerships to give women the information they need.

We know for some, life at home is increasingly difficult. School, childcare, work has all been thrown in the air let alone worries about other family members, food supplies and money. As NHS Maternity workers, we are giving all that we can give. When we talked at work about the NHS #ClapForCarers, most of us missed it. We were too tired, working or busy feeding our families. Yesterday in my clinic, a few women ‘gave back’. Just a simple ‘how are you?’, or ’thank you for being here’ is enough. We don’t need you to clap us, we just need you with us, together to get through this.

Graphic by Anna Geyer from New Possibilities

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The #MatExp #FabChange70! – 70 random examples of ‘fab stuff’ (9 Aug – 17 Oct)

by / #MatExp Actions, About MatExp, The #MatExp Journey, Whose Shoes / Comments Off on The #MatExp #FabChange70! – 70 random examples of ‘fab stuff’ (9 Aug – 17 Oct)

I had an idea for #NHS #FabChange70. I decided I would collect 70 different things that have happened as a result of #MatExp #WhoseShoes and share one a day until the official start date for the #FabChange70 on 17 October. 

@MrWhoseShoes rolled his eyes. He knows that these things are in danger of taking over my life (and therefore our lives!) So I promised to keep it simple. 

Ideally, I could perhaps have done something sophisticated, crowdsourced the best 70 ideas (there are plenty to choose from!), got different contributors to write a blog, or otherwise tell their story, every day for 70 days… 70 days is a long time and I really don’t have the time. 

Apologies in advance if I do not include something important, as I’m bound to miss lots of good stuff! If there is anything you are desperate for me to be include, please get in touch and we can build it in.

 So let’s keep it simple.
Let’s have some fun.
70 fab #MatExp things
And here’s the first one… 

#StopNCelebrate

And what could be better to start with than #StopNCelebrate? Like most of our best stuff, this was a spontaneous idea that came from one of our #MatExp #WhoseShoes workshops.
So the aim is: 70 things that come to mind that give you a flavour of the sorts of stuff we get up to through – culminating in a Steller story that pulls it all together. Steller stories only allowed 75 pages. Therefore only one page per idea. That has to be simple! Wish me luck!

Here is the story of the workshop that led to #StopNCelebrate.


And here is the story of how #StopNCelebrate caught fire! Well done … WARWICK HOSPITAL!!


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#LithotomyChallenge on #NHSDoAthon day

by / #MatExp Actions, Birth Trauma, Environment and Facilities, The #MatExp Journey, Whose Shoes / Comments Off on #LithotomyChallenge on #NHSDoAthon day

We are very honoured to begin #ExpOfCare week with a bang, publishing this insightful blog by Dr Sarah Winfield. We have connected with Sarah through the excellent ongoing #MatExp work at Leeds Teaching Hospitals NHS Trust, following the exciting Whose Shoes? workshop last summer. Part of the work in Leeds involves a different #MatExp challenge each month… and January 2017 was ‘lithotomy challenge’ month!

Sarah wrote this a while ago but we held it back to publish here as #ExpOfCare is such an important initiative and one which is central to #MatExp. We are very grateful to Sarah not only for taking the time to do the challenge, but more importantly to reflect so openly on the experience and share with us here… 

The #LithotomyChallenge is a term coined by one of my Obstetric colleagues in Kingston, Dr Flo Wilcock, who wanted to put herself in the position of a patient in lithotomy for an hour and to describe the experience. As part of #MatExp and to raise awareness of it’s existence and philosophy, I wanted to do the same. So I did on #NHSDoAthonDay at the start of January 2017. Here is how I got started.

I used to be sceptical about twitter until my tech-loving husband persuaded me to dust the cobwebs off my twitter account @winners352 (set up tentatively a while ago). David is a consultant in Education and assured me that performing CPR on my twitter account would not only be beneficial for my CPD, but would put me in touch with like-minded people, allow me to tweet the odd journal article, and would help me to raise the profile of the unit that I work in. I wasn’t ‘sold’ but I am an optimist and thought that I should give it a go.

So I changed my profile picture, tried to compose a sassy yet professional catch line and I started to browse for people and things that may interest me. Initially I retweeted posts that would not cause any controversy for my digital footprint or reputation as a member of the medical community, but then I worked out that if people put their opinions out there for all to see, then this provokes engagement and discussion. This conversation would then draw others in. Then information begins to flow, more people ‘follow’ and before you know it, there are people from all over the world tapping in to see what this is all about. Amazing. But also slightly scary.

Of course, I appreciate that there are downsides to having a twitter presence, but this is where the world is going now. I recall an article written for the Health Service Journal by Roy Lilley about STPs (Sustainability Transformation Plans). In this article, to paraphrase, he said that STPs are happening and are not going away, so you can be in the cast or the audience. It’s your choice. I think that the same applies to social media and twitter. So, I made the decision to learn more and make it work for me. This was at the beginning of October 2016.

Through twitter I made contact with Gill Phillips (@WhoseShoes) and Flo Wilcock (@FWmaternitykhft) who are the founders of #MatExp, and it turned out that I had actually met one of this duo before!

As well as being a Consultant Obstetrician with an interest in maternal medicine, I am also the Clinical Lead for maternity services for the Yorkshire and the Humber Clinical Network. This role took me to an event at the Kia Oval in London in July 2016 to discuss implementation of ‘Better Births’ (the National Maternity Review) in each network patch. There were a series of workshops and in one I joined in with a discussion about the “Whose Shoes” event that had been held in Leeds earlier in the year. I did not realise it at the time (probably because I was not on twitter at that point!) but Gill Phillips was one of the facilitators of that group. Professor Cathy Warwick and Mr David Richmond were the other facilitators.

While I had not been able to attend the Leeds Whose Shoes event itself, our LTHT strategy midwife, Sarah Bennett, was very much involved. At the event a cartoonist, Tom Bailey, recorded patients’ views and the conversations taking place. These were very thought provoking and I have to admit that one image in particular made me stop and think. It was of a doctor standing at the top of a hill pointing down to a midwife at the bottom of the hill. It was not particularly complimentary to us as doctors.

None of us set out to make patients and midwives feel like this but with the language we use, the information we need to get across and our communication skills in general, there was clearly an issue. This made me feel uncomfortable (and perhaps a tad indignant, if I am being honest) and I know that a few of my colleagues felt the same as me.

What happened though was that these images stimulated discussion and debate amongst the maternity staff members. While there might have been levels of disagreement about the images and what they portrayed us to be as medical and midwifery professionals, they were ‘real’ views of and we had to reflect here. Importantly these conversations were a starting point to encourage us to look at how we work on a day-today basis, the language we use with patients and each other, how we conduct ward rounds on the delivery suite and the whole experience for any woman and her family using our maternity service.

In other words, we had a platform from which to share our opinions about the maternity experience of patients in Leeds across both sides of the city.

Leeds is a busy tertiary unit. We have around over 10,000 deliveries a year between Leeds General Infirmary (LGI) and St James’s Hospital (SJUH) and we don’t often get to do sit down with our colleagues, whose opinions we genuinely value, and engage in a dialogue about patient experience. But here we were, and I felt like this was a good start.

I spoke about this experience in positive terms at the Kia event and Gill then made contact with me through twitter a few months later. A fortuitous connection for me and, I hope, for her too. I also ‘met’ Flo through Gill on twitter, and the rest has followed.

So who are Gill and Flo and what is #MatExp?

Gill, the creator of the award-winning Whose Shoes?® concept and tools, has a genuine passion and unsurpassed energy for “looking at issues from different perspectives and getting people to talk together as equals and come up with imaginative solutions”. She is also a mum of three ‘now grown up’ children.

Her website http://nutshellcomms.co.uk/gill-phillips-and-the-origins-of-whose-shoes/ is an inspirational working ode to her warm, inclusive and collaborative style. Gill’s passion for helping others is obvious to see and she takes people with her. This is one of the many reasons why she has been quoted by the Health Service Journal as one of the 50 most influential women of the year.

Florence (Flo) Wilcock is a Consultant Obstetrician at Kingston (and mum of two) and, inspired by Gill’s WhoseShoes concept, was keen to use this to improve maternity services and more. Flo is similarly an inspirational force and counts the RCOG and its former president David Richmond as her supporters, amongst many others. She joined forces with Gill and the #MatExp campaign was born.

The #MatExp website is a vibrant, colourful, positive and proactive resource and I would advise anyone working with women and their families. The best explanation of #MatExp is the one from their website, so in their own words:

“#MatExp is a powerful grassroots campaign using the Whose Shoes?® approach to identify and share best practice across the nation’s maternity services.

Then ensued a flurry of tweets between me, Gill, Flo and other #MatExp supporters and I was overwhelmed by the helpful, collaborative and go-getting approach. They are incredibly supportive to anyone on twitter who shows an interest in improving patient and family experience in maternity services.

As my knowledge grew about #MatExp and I had further twitter conversations with Gill, Flo and others, I read a piece by Flo that she wrote about her taking part in a #Lithotomychallenge. The piece is here and Flo explains:

“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!”

Taking Flo’s lead and transporting #MatExp to Leeds, I thought that a #LithotomyChallenge would be easy for me to set up and would put me in a patient’s shoes (goodness knows the amount of times in my career that I have put a patient in the lithotomy position for an instrumental delivery, a FBS, a perineal repair..) for a short while. I have two daughters, both born by caesarean section, so I had no experience of this, let alone with contractions, CTG leads, an epidural, a syntocinon drip etc.

I chose Wednesday 11 January 2017 as the morning I would do it. This was #NHSDoAthonDay and it seemed appropriate.

In the run up to the day, Sarah and I told people what I was going to do through the strategy newsletter, facebook, twitter and word of mouth. People asked why and asked what #MatExp was. There was also an interesting spectrum of opinion about my desire to do the #Lithotomy Challenge, ranging from people thinking that I was ‘patronising’ my patients and colleagues to others congratulating me for taking the initiative to do something different.

On the day of the challenge I put my hospital gown on, strapped the CTG leads to my abdomen and Sarah fixed an IV line to hand with tape and helped me up onto the delivery bed in Room 10 on LGI delivery suite. Then Sarah left to go across the city to St.James’ hospital where the midwives there were waiting for her to set them up with the #Lithotomychallenge too. I was by myself in the room. In lithotomy position.

I felt undignified and vulnerable. I also hoped that nobody would walk through the door, but they did. In groups, in pairs, alone. Mostly midwives. Each time I cringed as the door opened and I realised that the level of the bed meant that my bottom end was at their eye level. I was in leggings and a sheet. I can’t imagine the indignity and embarrassment for a woman of being ‘al fresco’ when someone comes into the room in that situation.

 

Then I noticed something that I hadn’t before; there was no ‘privacy curtain’ over the door. I now realise that this curtain is a feature of the delivery rooms at St.James’ hospital across the city and in every other maternity unit I can recall having worked in before. Such a simple thing would make a huge difference.

Then the surroundings really began to jump out at me. This room had magnolia walls, a light socket that was hanging off (previously an uplighter), holes and scuffs in the walls and nothing that I would describe as comforting, pleasant or homely. When you sit in a room for over an hour, these details are very obvious. I have been in this room many times during ward rounds, to deliver babies etc. and I had never noticed what an uninspiring and depressing environment it is.

Would I have enjoyed my birth experience in this room? Definitely not. Does it convey an impression of the warmth, skills, knowledge, team spirit and professionalism of the delivery suite staff that I know exists? No it does not. But a woman and her family have this room as the starting point on their personal, special and much anticipated journey to give birth to their precious baby so how is it going to set them up for a positive birth experience? It don’t think it will.

Then something unexpected happened. I felt really cross with this room, if it’s possible to be annoyed with a ‘space’. I know how hard the team work to look after women and their families, so why should the woman and us as the team, with our training, skills, compassion, knowledge and tertiary centre reputation be let down by awful facilities? All women should have a pleasant environment to have their baby. It’s very simple. Some paint, some wall décor, good lighting, promptly repaired faults. The list is not long and is easily addressed. This was the first unexpected result for me of my #Lithotomychallenge and I have to say that it really touched a nerve.

The other unexpected result for me what that when people came in to see me they shared their own birth experiences (good and bad) as I sat there on the bed

with my legs ‘akimbo’. I found this moving because these are people who I have worked with for the last few years, who I chat with when I’m on-call and who I think I know quite well. I heard stories of a fantastic waterbirth, an awful induction, someone struggling to get pregnant plus more. You could say that the ‘barriers’ were down, but I would like to think that me doing this challenge provided an opportunity for people to start conversations with me and each other about their experiences as patients in the maternity service.

My final recollection added some humour to my experience. While I was talking to a group of student midwives (they appeared to be more embarrassed than me), one of our delivery suite domestic staff, who I know quite well, knocked on the door, walked in politely and without ceremony, gave me a glass of water and asked me for the keys to my office so that she could give it a clean while I was tied up! There was no pulling the wool over her eyes. I gave her the key and my thanks.

So, what did I get out of doing the #Lithotomy challenge? There are two things that stand out for me. The first is that I allowed myself to ‘feel’ from a patient’s perspective. I was prepared to give a bit of myself away and open up to the possibility that we may not communicate in a way that enhances a patient experience or consider the importance of the environment that we create to do this. I think that to change culture, the language we use and the way we view the patient experience we need to look closely at our individual practice and challenge our own behaviours and judgements. This is hard and not everyone will want to do this but I have found that doing the #LithotomyChallenge has led me to review my own beliefs and practices as an NHS worker for almost 20 years and this has been like taking a deep breath of fresh air.

As a doctor and a consultant I am familiar with pushing my boundaries professionally and clinically, but can I use any ‘influence’ that I have in a different way? Of course I can be an ‘opinion’, counsel patients, make management plans, perform difficult c-sections, chair regional meetings etc. but working towards improving patient experience may be regarded by some as a ‘fluffy’ goal. Very ‘touchy feely’ and not really hard-hitting or go-getting enough to warrant using precious consultant time in an already busy day where we are here to deliver a service and fulfill the objectives of our job plan/appraisal personal development portfolio. But sometimes it’s not until you experience the ‘other side’ and and allow yourself to ‘feel’, that you realise what needs to change. I now know that I would like to be more proactive in considering the whole patient experience when I am involved in any aspect of a consultation or a procedure.

The décor was the second thing. I have seen many articles and personal commentaries about the effect of surroundings on birth experience, and we already know that the environment during labour and delivery can have a profound effect on how patients ‘experience’ their care. After spending time in a room that has seen better days, I can believe it. Never underestimate the importance of surroundings and this challenge has highlighted that for me. I hope that this piece will result in privacy curtains being put up in each delivery room at LGI. This would make such a difference. But improving the delivery rooms in this unit is going to require funds. I regularly see healthcare workers and patients fundraising for their units and doing the #Lithotomychallenge to spurred me on to do this.

There is one final thing that the challenge has done. By writing this piece I have a voice. I have not asked permission and have not sought the ‘approval’ of anyone. I have just done it and have been supported by most of my colleagues, including Sarah B. I was nervous about doing the #LithotomyChallenge and had a sense of trepidation about what others would think, but I have enjoyed what the experience has brought and have been inspired by Flo and Gill, who have given me a masterclass in wholeheartedly and warmly welcoming others thoughts and diverse opinions. In their eyes no opinion is ‘wrong’ or ‘daft’. If disagreement arises then it is not to be feared or ridiculed. It can be used as the basis of a conversation to challenge the status quo and then move forwards.

“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek” (Barack Obama).

Dr Sarah Winfield
Consultant in Obstetrics with Special Interest in Maternal Medicine. Leeds Teaching Hospitals NHS Trust
Yorkshire and the Humber Clinical Network  Clinical Lead for Maternity Services
NHS England Women’s Specialised Services Clinical Reference Group representative for the North of England

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Putting the Heart into Matexp – Heart Values

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

Cloud 2

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

Choice

Kindness

Language

Respect

Dignity

Compassion

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

FullSizeRender (17)

Choice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kindness

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

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

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

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

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

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

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

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

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

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

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

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

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Language

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

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

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

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

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

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

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

 

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

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

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

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

“Failure“   and   “incompetent”

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

Respect

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

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

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

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

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

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

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

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

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

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

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

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

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

Dignity

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

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

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

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

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

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

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

In fact this summed Dignity up perfectly.

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Compassion

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

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

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

Do we see compassion in maternity?

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

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

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

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

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

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

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

Can we as families show compassion to staff?

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

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

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

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

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


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

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

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

 

Emma Sasaru

 

 

 

 

 

Share the Word About MatExp!

#Matexp – Taking action on improving Tongue Tie services.

by / #MatExp Actions, Continuity of Care, Feeding, Informed Choice / 2 Comments

There have been some fantastic conversations taking place on the #MatExp Facebook group, with lots of ACTION threads being posted to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

One of the discussed topics was Tongue Tie’s, the effect they can have on feeding, but also the struggle to access help and support. So what is a tongue tie? How does it affect a mother and her baby? What can we do to ensure families access the support they need?

“Tongue-tie (ankyloglossia) is when the string of tissue under your baby’s tongue called a frenulum, which attaches their tongue to the floor of their mouth, is too short or tight. If your baby has tongue-tie, it can affect the tongues movement, preventing it from moving freely, this can cause problems with feeding, either at the breast or a bottle, speech, and moving on to solid food. Tongue tie can vary in degree, from a mild form in which the tongue’s movement is only slightly impaired, to a severe form in which the tongue is completely fused to the floor of the mouth. Feeding difficulties may arise due to the inability to move the tongue in a normal way and therefore impacting on attachment, sucking, making a seal and removing milk effectively. Many tongue-ties do not require treatment. However, if the condition is causing problems with feeding, surgical division of the frenulum can be recommended and carried out as soon as possible. It is important that families receive support from trained people as not all tongue ties can be clearly seen and each mother and baby will be different.h9991638_003

How does tongue tie affect a mother and baby? If a mother is breastfeeding tongue tie can affect latching to the breast, in fact some babies are completely unable to latch. It can be difficult for the baby to make a good seal on the breast or maintain the latch during a feed. The results can be sore nipples for mom, static or loss of weight in baby due to poor milk transfer, this in turn can affect milk supply and maintaining breastfeeding.  Some babies feed inefficiently for a short periods of time, get fed up, fall off the breast asleep and exhausted, and then wake an hour later as they are still hungry, so that they are feeding almost continuously. Continuing to breastfeed can become almost impossible with the constant feeding, sore nipples and effect on supply. Babies can become exhausted, and so trying to feed becomes more difficult thus affecting the health of the baby.

With bottle-feeding babies, tongue tie makes it difficult to make a good seal around the teat. The suck is inefficient, and the feed can take two to three times longer. As the seal is leaky, babies will often dribble milk in varying amounts, thus not getting a full feed. As the milk leaks out, air can get in and is swallowed. Both breastfeed and bottlefed babies can be very ‘windy’ with the possibility of increased colic and irritability.

So Tongue tie can have massive consequences on both breastfeed and bottlefed babies. For breastfeeding moms it can mean the end of their breastfeeding journey can can affect their emotional wellbeing too.

So the question raised is, how can we support families and improve services for babies with a Tongue tie?

From the discussions on the Matexp facebook page there were three clear areas that were highlighted.

1. Clear pathways of care. Many commented and shared their experiences of lack of support. There seemed great differences in support available from area to area and it was not always clear where or to whom mothers should be referred to for assessment, diagnosis and division of tongue tie. Some commented that perhaps it should be part of the newborn checks for babies, while others discussed the wisdom in waiting a while to see how feeding progressed before doing a division.

Either way, what was clear was the need for all areas to have a simple, clear pathway to help families get the support they need.

  • These pathways should be known by all including breastfeeding support workers, midwives, health visitors, neonatal nurses, paediatric doctors and G.P’s, as well as parents.
  • The pathway should include trained staff to assess, diagnosis and divide tongue ties.
  • That there should be support post division for feeding.
  • Joined up working between private, NHS and voluntary organisations.
  • Actual acknowledgement of the effects of tongue tie, something some parents reported they did not receive.

2. Trained staff . Many of the comments reflected the fact that there seems to be little in the way of trained staff to assess, diagnose and divide tongue tie. Many reported that despite problems they were told feeding was going well and getting checked for tongue tie was difficult. Some reported having to pay privately for both the assessment and treatment, as there was no one trained available in their area.  Others commented on confusion between healthcare professionals regarding the signs of tongue tie and its impact on feeding, some commented that they were told that the tongue tie needed to be cut without any assessment. Also even when tongue was diagnosed many said they faced long waiting lists with no help to support feeding or maintain lactation. In areas where there are no trained NHS staff, there is no where to refer families to and so the only option is private care which has led to often a costly private market which many families are unable to afford.

So what actions were suggested?

  • All areas to have trained NHS staff to assess, diagnose and divide tongue ties.
  • Working together of NHS and private care to support families, provide services, if there is a lack of trained NHS staff.
  • Staff trained on what a tongue tie is and the signs, effects, it can have on feeding.
  • National recognised, agreed method of assessing knowledge, skills and training.
  • Regular weekly clinics to keep waiting times down.

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3.  Support. By far the biggest number of comments were about support. Families commented again and again about the lack of support for tongue tie. There was a big discussion regarding definition of roles, appreciation of roles and how this impacts on support given. Many felt they received more support from voluntary support roles than health professionals, but then found that support limited or not not valued. Others said they received no support at all which resulted in loss of breastfeeding relationships. Others said that due to lack of support with breastfeeding, tongue tie became the issue that everyone ‘hung their hat’ on as a magical quick fix but then were left with no post division support and felt left alone to get feeding established. One mum said she ‘wished someone had just listened’ because she knew feeding was not progressing ok.

So what actions came forward regarding support?

  • Always listen to the mother, if she feels something isn’t right remember she knows her baby best.
  • Full assessments of feeds by qualified staff to see if feeding is affected by tongue tie.
  • Information and awareness of the signs of tongue tie for HCP’s, and parents.
  • Support with breastfeeding is essential as often support to position and attach baby well can be enough to improve feeding and prevent the need for division.
  • Support for families who bottlefeed on ways to improve feeding pre and post division.
  • Parents need information and support to make an informed choice as to whether to have a tongue tie division.
  • Post division support with breastfeeding and follow up.
  • Help to support lactation, pump loan.
  • Specialist support for premature babies with tongue tie.
  • Appreciation of roles in both the NHS, private and Voluntary sectors. All working together to provide integrated care for families.
  • Clear definition for families and HCP’s on roles, who can do what and who can offer support.

Tongue tie can be a difficult issue that families face, accessing support, finding information and getting lost in the system can leave them feeling frustrated and let down. Of course we all wish we had a magic wand to instantly provide clear pathways, much needed training and support and also weekly clinics that enabled those that needed tongue tie divisions to be seen as soon as possible to lessen its impact. However, while at present support varies from area to area, what can we all do to help make changes to help families?

  • Write to your local MSLC, head of midwifery, head of health visiting, PALS, commissioners or NHS trust and tell them both your struggles to access help but also when you have experienced great support.
  • We can also build on good existing services or use these as a model for setting up services in other areas.
  • If your a HCP and suspect a baby has a tongue tie but are not trained or unsure then signpost or refer the family to someone that is. Find out what is available in your local area.
  • If your a parent that suspects your baby has a tongue tie and isn’t feeding well, seek help and keep on asking! Research tongue tie for yourself so you can make an informed choice and remember is not a quick fix but feeding will take time to settle and adjust after division.
  • As support workers, breastfeeding counsellors, IBCLCs, healthcare professionals and NHS Trusts let us all listen to families and work together to provide them with the care, support and services they need, to give their little ones the best start we can.

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Tongue tie support http://tonguetieuk.org/network/ 

Emma Jane Sasaru

@ESasaruNHS

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#FlamingJune – #Matexp igniting the flames to improve maternity experiences

by / #MatExp Actions, About MatExp, Baby Loss, Feeding, Informed Choice, Language, The #MatExp Journey / Comments Off on #FlamingJune – #Matexp igniting the flames to improve maternity experiences

Wow what a month its has been!  The whole of June has been #FlamingJune, a month when everyone was asked to share actions big or small to show ways they are going to improve maternity experiences. Everyone whether a mother, a doula, a midwife, blogger or campaigner was invited to post actions on the Matexp facebook page, the twitter hashtag #Matexp or the Matexp website.

What a response! In fact there have been so many actions it is impossible to list them all. But here is a little round up of the general ideas behind the actions.

LISTEN, this was mentioned by so many and shows how important is it that women are listened to, in pregnancy, during birth and afterwards. Many voiced that this simple action alone would have improved their experience and many voiced that listening to women more was their action.

ADVOCATE, for women, for families, by Blogs, campaigns, education classes and working with local maternity liaison service committees many spoke of ways they will seek to support families. Some will be doing so be simply voicing their own experience.

CHOICE, campaign for, raise awareness of, make sure women are aware of and given choices and that their choices are listened to, respected.  Some actions involved women simply educating themselves on the choices available to them, while others spoke about raising awareness of options and choices and how to get support.

SUPPORT, for breastfeeding, families with babies in NNU or on paediatric wards, perinatal mental health and for families that have lost their precious babies. Also how healthcare professionals can all work together to make support for families better. There were so many amazing ideas and actions on support and again many voiced how important support is.

Some said that their actions were to become midwives and health visitors and to be on the frontline of supporting women and their families, to change cultures and improve maternity services.

During #FlamingJune we have discussed, tongue ties, infant feeding, baby loss, perinatal wellbeing, birth trauma, medication while breastfeeding, NICU, low birth weight, PND and much more. These were based around the Matexp twitter Alphabet.

This month saw us celebrate fathers day and the importance of dads to families. We saw beautiful pictures on the Matexp facebook page of dads doing skin to skin, holding, playing and loving their families. It was so moving, and truly showed how valuable they are and all partners, to the wellbeing of families.

This month was also #celebratebreastfeeding week. Again we saw amazing pictures and comments of the good support that families have had, but also many posts on the lack of support that so often seems the situation many families face. With many areas finding cuts are being made to breastfeeding support it is a timely reminder of how important it is that feeding support is part of a good maternity experience.

#FlamingJune saw the release of the first, of we hope many, videos on Matexp. Florence, Gill and Sarah in a really moving video shared with us all how and why Matexp started, the whoseshoes workshops and the impact it has had on services.

Also the first Matexp workshop to be held outside of London in Guernsey which is so exciting. Hopefully workshops will start to spread all over the UK and who knows eventually, maybe the whole world.

So as we reach the end of #FlamingJune what now?  Well if you haven’t made an action you still can, it doesn’t have to be a big change it can be as simple as thinking about the language we use around a pregnant women or to share our story. If we have made an action, keep going to see it through. Every small change we make as individuals makes a difference. It maybe that your action will be hard to make happen, or will take a long time, but don’t give up because even just changing the maternity experience for one family makes it so worthwhile.

There are more plans ahead for the coming months, so much to look forward to. Thank you for the journey so far, for your actions, thoughts, comments and support. Matexp puts families at the heart, its overall theme is kindness and compassionate care. It is a safe place for everyone to voice their views. So take a look and get involved in making maternity experiences better for everyone.

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Emma Jane Sasaru

@ESasaruNHS

 

Share the Word About MatExp!

#Matexp – Emotional Wellbeing – what do families really need?

by / #MatExp Actions, About MatExp, Baby Loss, Birth Trauma, Environment and Facilities, Feeding, Postnatal Care, Pregnancy Complications, The #MatExp Journey, Uncategorized / Comments Off on #Matexp – Emotional Wellbeing – what do families really need?

 Supporting families – Emotional Wellbeing

#Flamingjune is well under way and there has been so many wonderful conversations taking place on the Matexp facebook group. As part of this months campaign, ACTIONS to improve services have very much been at the forefront with everyone sharing ideas to make sure support given to families is the best it can be.

With this in mind one of the subjects discussed was Emotional Wellbeing. Many shared heartfelt stories, and personal experiences as well as ideas that would have made a difference them and their families.

Matexp asked;

  1. How much do you feel your pregnancy, birth and postnatal care affected your emotional wellbeing?
  2. How do you think we can help prepare women and their partners for the impact that birth and caring for a new baby has on emotional wellbeing ?
  3. What supported or helped you to protect your emotional wellbeing?
  4. What can be done to help health care professionals be able to support families better?

Many commented on how we often under estimate the impact having a new baby has on a family. It was said that ‘adapting from working life to being at home was overwhelming’, ‘that often dads are working long hours and need support too’ and having somewhere to go to talk to others and relax was vital. Emotional support was mentioned as being a “basic need” for families.

One comment noted that ‘real life’ parenting needs to be discussed at antenatal contacts. “We are bombarded with the prefect images of parenthood, I don’t think people are prepared for the realities of parenthood – being totally exhausted but this little person still needs feeding and there is no milk in the fridge so you cant even have a coffee to wake up you”.

Another commented’ ” professionals need to understand the stresses which parents face not just with the birth, but financial, logistical etc”. What suggestions were made that would help? “By looking through the eyes of the patient, and trying to see things from their point of view”. Yes walking in another’s shoes so to speak showing empathy, and understanding helps provide support that protects the emotional wellbeing of families.

Many voiced feeling left alone, isolated and ‘fending for themselves’ after the birth of their babies and how this impacted their emotional wellbeing. Many felt afraid to voice they were struggling with motherhood and kept it to themselves worrying they be dismissed or viewed as ‘failing’.

Others voiced how important good support from health visitors, peer support and support groups was to their emotional wellbeing and not just for mom but dads too. In fact is was mentioned how important it is to ask dads how they are doing too!

Again and again support was mentioned for birth trauma and loss of a baby. Things such as professional counselling to be available as standard and peer support on wards and units. As well as health professionals knowing where to signpost families for support including local charities and national organisations.

One comment read “the single biggest thing would have been to treat us respectfully”. Very sobering.

So what were some of the actions that came out of the discussion to help with emotional wellbeing?

  • Maternity units to have specially trained staff to care for those that have suffered birth trauma, loss or mental health issues.
  • To remember that care involves emotional support not just physical.
  • Peer support for families on wards and in NICU.
  • Specialist counselling services available as part of post-natal after care and on NICU unit so families do not have to leave their babies.
  • Antenatal support on ‘real life’ caring for a baby, as well as how to look after their emotional wellbeing.
  • After birth de-briefs for sharing of experiences both good and bad to help improve care given.
  • Remember that dads need support too.
  • Health professionals to be aware of support available to families so they can signpost.
  • For all staff supporting families to show kindness, compassion and empathy and provide care that is patient-centred meeting individual needs.
  • Most of all treat families with respect. “letting mums and dads know that being good is good enough – they don’t need to be perfect”.

Emotional wellbeing is important for families, by sharing experiences, listening and working together we can help improve the maternity experience for all.

There is beauty in giving to others

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Emma Jane Sasaru

@ESasaruNHS

 

 

 

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