Maternity Experience

#MatExp Actions

#Matexp – Taking action on improving Tongue Tie services.

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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Time to Act on Infant Feeding

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.

A topic I was keen to bring up was Infant Feeding, as Emma Sasaru and I are the “breastfeeding champions” for #MatExp (see our original “call to action” blog post). I was less keen to put together the subsequent blog post as it is such a huge and emotive topic, but I have finally put on my big girl pants and pulled it all together. The resulting post is in two parts: firstly, the actions and comments from the group thread. Secondly a little library of links to some fantastic blogs and articles that I really would recommend if you have an interest in this subject.

When I put up the thread on the Facebook group I asked the following questions:

Question 1: How can we ensure that every family is offered appropriate support to feed their own child, with respect to their individual circumstances?

Question 2: If you wanted to breastfeed but could not, was that due to a lack of appropriate support? If so, what support would have made a difference for you?

Question 3: If you wanted to breastfeed but could not, was that due to a medical issue that no amount of support could have alleviated? If so, what emotional support were you offered?

Question 4: If you formula feed, were you given good information about how to safely make up a bottle, skin-to-skin and paced / responsive feeding? As a healthcare professional do you have access to this information?

Question 5: Are all healthcare professionals now aware of and using First Steps Nutrition as their reference point for information about infant formula?

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A really interesting discussion ensued with lots of different experiences shared. The resulting action suggestions are as follows:

  • Far better infant feeding education antenatally – including what to expect, normal newborn behaviour, cluster feeding and safe & effective formula/bottle feeding. Explain that breastfeeding is a skill that mum and baby both have to learn and that it is difficult, but it does get easier. Emphasise the importance of asking for help and support.

  • If a family wants to breastfeed it is worth finding out whether anyone else in the family has done that before. Breastfeeding is much harder when those close to you do not understand it or are distrustful of it.

  • Don’t be so quick to discharge – observe a FULL feed before deciding that the baby is feeding effectively. Longer term consideration needs to be given to how long families can stay in hospital as quick discharge can mean mum is struggling by day 3.

  • Breastfeeding support needs to be 24/7 – one mum reported having a baby on the Wednesday and being unable to find NHS support when she hit “crisis point” at the weekend.

  • If part of your job is to support infant feeding, make it your mission to find out all of the places to which you can signpost families who are struggling. There is a lot of support and information out there but too often HCPs do not send families to it.

  • Be aware that birth professionals and other healthcare professionals often do not have sufficient training to deal with complex breastfeeding problems. As a parent, do not be afraid to question and ask for additional support. As an HCP, see above re signposting – know what is available in your area.

  • The NHS should provide information on non-NHS support options – International Board Certified Lactation Consultants (IBCLCs), breastfeeding counsellors and peer supporters, all the major voluntary organisations and doulas.

  • Full time, dedicated breastfeeding support midwives on every maternity ward, and support available after discharge. Relying on volunteer peer supporters is not a sustainable model. Unpaid peer supporters do an amazing job but to truly make a difference to infant feeding more paid staff are required.

  • Tongue tie to be checked for as part of the routine newborn checks. (Click here for more #MatExp discussion on this)

  • Be mindful of IV fluids used in labour when assessing the amount of weight a baby has lost. The initial birth weight may well have been inflated.

  • Where supplementary feeding is necessary, try to use a supplementary nursing system (SNS). They help to stimulate milk supply whilst giving the “top up” of formula or expressed milk.

  • Where a woman wants to breastfeed but has been unable to, please ensure she is given good quality, independent information on formula feeding AND emotional support around the fact that she was not able to meet her breastfeeding goals. A debrief with someone qualified in breastfeeding support would help to work through what happened and deal with some of those destructive (and unnecessary) feelings of guilt.

  • Empower, educate and support women so that they can make a genuine choice about how they want to use their body and how they want to feed their child. Once that genuine choice has been made, support that choice regardless of your personal viewpoint.

  • Do not be so quick to “blame” the dyad for breastfeeding difficulties. Look at potential underlying medical issues.

  • Normalise breastfeeding for the next generation by including it as part of the science/personal development curriculum

  • Support to feed babies at the breast needs to be moved far higher up the agenda for governments and healthcare commissioners alike

Remember this which Elizabeth Pantley shared on her Facebook page:

via http://www.pantley.com/elizabeth/ via http://www.pantley.com/elizabeth/%5B/caption%5D

We need to look after the “someones”. Understand their goals and fears, their preconceptions and their anxieties.

One of the mums on my private Facebook group gave a great summary the other day of how it’s all gone a bit wrong for infant feeding in the UK:

“Pressure from health professionals to feed but a lack of support to do so, meaning when mum comes across difficulties she just blames herself and feels she has to stop. (“I had no milk.”)

Decades of bottle feeding being promoted as “best” meaning our parents and grandparents don’t understand breastfeeding, and encourage formula feeding instead. (“Just put him on a bottle, it never did you any harm.”)

A formula feeding society making it seem that babies should be sleeping through the night and “in a routine” undermining the confidence of breastfeeding mums. (“Tom has been sleeping through from 2 weeks!”)

No counselling or debriefing for mums who felt they had to stop breastfeeding before they were ready.

The formula companies and their advertising promoting “mommy wars.”

A refusal to talk about bottle feeding openly and frankly by health professionals due to fear of causing offence.

The high price of formula making mums feel punished for bottle feeding.

We’re getting it all so, so wrong as a society and segregating parents when we should be uniting them. How you feed your baby shouldn’t even be an issue – the issue should be whether or not you are supported.”

Lucy, Dorset

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So what would I recommend as a bit of infant feeding bedtime reading? There are so many fantastic resources, but based on the actions above and recent discussions this is my current pick of the pops:

  1. The “Second Night Concept” – why does it seem as though everything has “gone wrong” on night 2? 

  2. What is normal behaviour for a newborn baby anyway?

  3. If breastfeeding is so “natural” why is it so hard

  4. Who are all these different people who are qualified to support breastfeeding? 

  5. The hurt that is caused by the media constructed “mommy wars” 

  6. Why what I do with my breasts is none of your business 

  7. Are we really under pressure

  8. The part that the formula companies have to play 

  9. Are we being unfair to formula feeding mums?  

  10. Supporting women to breastfeed when they need medications 

 

There is also of course my own #hospitalbreastfeeding campaign which focuses on the support available for breastfeeding families on children’s wards and in children’s hospitals. There is another selection of fantastic links under the Guidance section on my website http://www.heartmummy.co.uk and for more discussion on this particular area please see https://heartmummy1980.wordpress.com/2015/05/10/when-hospitalbreastfeeding-met-wenurses-2/

Finally, if you are still suffering from insomnia, there is my own feeding story which covers formula feeding, combi feeding and natural term breastfeeding – I’ve tried to sample a bit of everything with my boys! 

I saw Mark Harris speak at the Association of Breastfeeding Mothers conference last month and he said something many will have heard him say before: “evidence is not the same as truth”. This has particular resonance for me when it comes to infant feeding. The evidence is about statistics, nationwide trends, health outcomes across generations and demographics. Truth is about what you can see with your own eyes and understand about your own family. There is no need to question or reject the evidence to protect your own truth. The evidence says quite clearly that my eldest son has a higher likelihood of poor health outcomes in later life because he was formula fed from 10 weeks old. The truth is that if I had tried to continue breastfeeding he had a 100% likelihood of being shouted at and rejected by his mother.

We all have our own truths. Finding someone with the same truth as you is so empowering but it is important to recognise that other people’s experiences are no less valid than yours. The evidence is important for parents making informed choices, and for commissioners when deciding on what priority to give infant feeding. The truth of your own circumstances and experiences is important for deciding what is best for you, and only you and your family know what that is.

The important thing is not what choices we make. The important thing is that we are supported so that we can make those choices. And at the moment far too many families are having their choice to breastfeed taken away. This has to change.

Reap benefits

Helen Calvert

@heartmummy

2015

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Time to Act on Breastfeeding and Medications

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.

I have great pleasure in sharing with you a guest blog from Infant Feeding Coordinator Luisa Lyons, a midwife and IBCLC at Norfolk and Norwich University Hospital.  Luisa led a discussion on the Facebook group about breastfeeding and medications, and this is here write up of that topic.  Take it away Luisa!

Luisa Lyons, guest blog author
Luisa Lyons, guest blog author

Can you breastfeed after having a tattoo? Can you breastfeed if you are on Prozac? Can you breastfeed if you take antihistamines?

As part of #FlamingJune, the #MatExp group discussed the topic of breastfeeding and medication. An interesting discussion took place and some actions were generated to help move forwards on this important topic to improve maternity experiences.

Breastfeeding mothers are frequently misinformed by health professionals with regard to what they can and cannot take, and at what dose whilst breastfeeding. Many mothers are told to stop breastfeeding unnecessarily, to “pump and dump” when not necessary or denied medications that could benefit them.

Contributors to the discussion described being denied medications for mental health conditions, or being prescribed medications later found to be harmful, being told to stop breastfeeding in order to be able to take anti-depressants or other medications to treat mental health issues.

The hurt and frustration women feel at discovering the advice was wrong is considerable and stays with them.

The increased risks to mothers from not taking medication which is indicated, and the risks of not breastfeeding to maternal and infant health mean that everyone involved in supporting new mothers needs to be aware of breastfeeding and medication.

Themes that were raised were assumptions that babies do not “need breastmilk” over six months and therefore stopping breastfeeding in order to take medication was then indicated. We know this is incorrect and that as long as a mother and baby dyad continue to breastfeed, the longer the beneficial health effects last, in a dose response manner. The World Health Organisation recommends breastfeeding exclusively for the first 6 months and then continuing up to 2 years of age and beyond.

Another theme was women with chronic pain conditions finding difficulty in accessing accurate information. In addition there were reported inaccuracies about dental extractions/sedation. Another breastfeeding mother got in touch to say she had suffered from hayfever for months before discovering she could have been taking the antihistamine Loratidine with no concerns.

BfN meds

NICE guideline Maternal and Child Nutrition (NICE, 2008) describes the standard of care that should be implemented with regard to prescribing for breastfeeding mothers. In standard 15 it states:

  • Ensure health professionals and pharmacists who prescribe or dispense drugs to a breastfeeding mother consult supplementary sources (for example, the Drugs and Lactation Database [LactMed] or seek guidance from the UK Drugs in Lactation Advisory Service.
  • Health professionals should discuss the benefits and risks associated with the prescribed medication and encourage the mother to continue breastfeeding, if reasonable to do so. In most cases, it should be possible to identify a suitable medication which is safe to take during breastfeeding by analysing pharmokinetic and study data. Appendix 5 of the ‘British national formulary’ should only be used as a guide as it does not contain quantitative data on which to base individual decisions.
  • Health professionals should recognise that there may be adverse health consequences for both mother and baby if the mother does not breastfeed. They should also recognise that it may not be easy for the mother to stop breastfeeding abruptly – and that it is difficult to reverse.

BfN

Dr Wendy Jones, pharmacist and breastfeeding tutor with the Breastfeeding Network and Independent Prescriber, has been instrumental in raising awareness of the issue in the UK and supporting thousands of women to breastfeed whilst on medication. She has so far written many factsheets on breastfeeding whilst taking medications. They can be found here https://www.breastfeedingnetwork.org.uk/detailed-information/drugs-in-breastmilk/drugs-factsheets/

So how can we ACT to improve experiences for mothers and babies?

LactMed

  • Empower women to question advice where they are told to stop breastfeeding in order to take a medication
  • Encourage evidence based information use to enable mothers to make informed decisions of risks and benefits where the evidence is not forthcoming on a particular drug
  • Devise e-learning packages for staff to learn more about infant feeding and include medications and breastfeeding in this training
  • Maternity units to forge closer links with public health departments to encourage joined up working
  • Make a poster for antenatal clinics asking women who are pregnant and on medications if they would like more information on their medications and future breastfeeding
  • Make the safety of Drugs in Breastmilk a less scary topic for HCP’s so that support can come upstream from the firefighting that Dr Wendy Jones and her colleagues have to do when mothers receive incorrect advice. The current system of women self-seeking information, largely online, means that less literate women are at a disadvantage
Luisa with Janette Westman who inspired her to get involved with infant feeding when they worked together in Bradford.
Luisa with Janette Westman, who inspired her to get involved with infant feeding when they worked together in Bradford.

Luisa Lyons
Infant Feeding Co-ordinator
Midwife and Lactation Consultant (IBCLC)
Maternity Services, West Block Level 3, Norfolk and Norwich University Hospital

2015.

 

 

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#FlamingJune Burns On!

Flaming June was well-named – it was so busy I think I could see smoke!

The month got off to a flying start with the launch of this website, the Facebook page, people sharing their action selfies – and so much more!

My other half became unwell, which coincided with my return to work after a 15 month absence.

As well as that, I managed to squeeze in:

  • Co-hosting a #PNDHour chat about baby loss,
  • Talking about my #MatExp journey at an SCN event,
  • My action post – #saytheirname appeared in the Huffington Post,
  • My post about what I wanted the National Maternity Review to knowwas Mumsnet’s Blog of the Day.
  • Talking (with lovely Susanne) about MatExp at the BritMums Live conference and being deluged with interest!
  • Maintaining my own blog,
  •  A wonderful week’s holiday in France (and it’s little wonder I needed to sleep so much during the holiday!).

Women have fed back that:

  • They want to be treated as an individual
  • They find terms like ‘low risk’ and ‘high risk’ unhelpful for a range of reasons, including that life is rarely black-and-white, and managing expectations.
  • They understand the evidence behind advice and practice, and do not want to be preached to. They want to be engaged in conversation as an equal, listened to with compassion and empathy, and helped to understand in a way that is useful to them where necessary.
  • Language is so very important – the words that are used are crucial, as is the intonation and the order you put words in a sentence (eg open questions – “Would you like…” “May I…” rather than “You must…” “I am going to do this to you…”).
  • Better efforts are required to meet the needs mums whose babies are being cared for in neonatal units – while the mum is in the postnatal ward, and after discharge to make sure she does not miss out on the usual postnatal checks, as this can often fall between the cracks.
  • Parents who have experienced the death of a baby need better access to support – too many parents are currently left to find their own support, or have to do without. This is unacceptable.
  • There is a lack of support after birth trauma. Mums have said they’ve been told to ‘get over it’, their experiences invalidated. This is also unacceptable.
  • More consideration needs to be given to birthing environments. For example, midwife-led centres seem so lovely, with attractive furnishings – and they seem especially lovely in comparison to many hospital labour wards. It can seem like giving birth in hospital (often the only option for ‘high risk’ women) is a punishment for things outside our control! Would it be possible to make hospital labour wards a bit homelier to reduce the disparity? It could help reduce some of the polarisation of opinion about where is the best or safest place to give birth (the best or safest place to give birth is the place that is appropriate for the woman and/or baby’s individual needs, whether than is in hospital, an MLU or at home).

So that’s Flaming June, in a nutshell. Has our fire burned out? Goodness, no!

What women (and men!) have told us spurs us on, our fire burns forever brighter.

Please do get involved! It is everyone’s business. Getting involved in #MatExp is like a no obligation quotation. We understand that life ebbs and flows, the time you have or are able to commit will fluctuate. There might not be anything that piques your interest now, but who knows what might happen next month, or in six months’ time (we certainly don’t – we’re making it up as we go along!).

We encourage people to find a way to engage that is relevant to you, where you are in life, the time you have on your hands.

For example, my lovely friend Jennie started a Charity Chat series on her blog, and information on recommended books for children dealing with grief. So much support is out there but it can be difficult to find. This will provide an invaluable resource for other parents and families.

Do also have a read of Flo’s post with ideas about how you can get involved.

For my part, I am going to continue encouraging people to #saytheirname; to talk about Hugo’s story, and the learning from that; to help reduce the taboo surrounding baby loss; to talk about #MatExp

We know doctors and midwives on the whole want to give women and their babies a safe experience that is as positive as possible. It’s about asking those who care for women to take a step back and reflect on their practice and think about what they could do differently.

With passion and determination we can together make a difference to the experience of women and babies in maternity services across the country – and to the experience of staff who care for them.

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#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

 

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Time to Act for Dads & Partners

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.

A topic that I brought up in the early days of the group was Dads & Partners.  How can we support them?  How can they support us?  How can they be involved in maternity experience?  What do they struggle with?

From the group discussion, and discussions I have had elsewhere, there are three key themes when it comes to Dads & Partners:

  • Including them in the maternity experience
  • Allowing them to stay with their new family
  • Supporting them with their own mental health & the mental health of their loved ones

 

It Takes Two

Including Dads & Partners in the maternity experience is helpful for all concerned.  It helps them to understand what is going to happen to the woman in their life, to prepare themselves for the different scenarios of birth and the postnatal period.  It empowers them to help the mother and brings them together as a unit, which is of huge benefit to the baby.  Informing and supporting Dads & Partners is a gift to a new family – Mark Harris of Birthing for Blokes explained at the ABM Conference last week that a well informed and prepared partner is a consistent presence for the mother, helping her every day where healthcare professionals might only be available briefly and inconsistently.

Mark also explained how men are generally “goal orientated” creatures who like to understand their role and the expectations that go with it.  Giving a man clear guidance as to how he can support the new mother in his life can be so helpful to the whole family.  From a breastfeeding perspective, for example, there are so many things that a Dad or Partner can do to truly support a breastfeeding mother, as a great blog by The Milk Meg explains.

Milk Meg

ACTION: healthcare professionals, please make sure that you find out who mum’s “cheerleaders” are going to be in pregnancy and in motherhood.  This might not be a father or a partner, it could be a grandparent or a friend, but whoever it is needs to be informed and empowered for their own benefit and the benefit of the mother & baby they care about.

ACTION: parents and families, be sure to speak up if you feel that not every member of the family team is being adequately supported on your maternity journey.

 

Stay With Me

Allowing Dads and Partners to stay with their new family in hospital once the baby is born is something that I see suggested over and over again as a key issue for parents.  NICU nurse Louise has written this blog post on the subject and I used it as an opener to the thread on the #MatExp group.  This comment from a group member demonstrated the way that dads can feel uninvolved:

“My husband really struggled after our first son was born. He felt ignored, pushed aside and unimportant whilst I was in labour, no one would tell him anything when I was being prepped in theatre and half an hour after my son was born he was thrown out, not allowed to walk me to the ward or have any time with us. It was better on the ward, they were more relaxed but obviously he still had to leave. When I got pregnant again it became obvious he has some major birth trauma to work through as well” (#MatExp Facebook group member)

When talking about partners being asked to leave once the baby was born, group members described this as “shocking”, “barbaric”, “being torn away from your support system” and overwhelming feelings of loneliness and being alone when “confused, dizzy, bleeding, trying to read breastfeeding leaflets and change meconium-filled nappies in the dark.”  The discussion was an emotional one, with many women feeling outrage that one half of their family and parenting team was ousted from the crucial first hours of the family and parenting experience.

I asked Mark Williams of Fathers Reaching Out for his thoughts on this:

“In my own experience it would have been easier for my wife after a twenty hour labour and an emergency C-Section for me to help her with my son. My wife hadn’t slept and was totally exhausted and coming down off medication so needed support, which I would have been able to give her.”

 From my own personal perspective, choosing a homebirth with my first baby was due in large part to my utter terror at the idea of being left alone in hospital with a new baby without the one person who understands me, understands my anxieties, cares about my wellbeing and knows how to support me.  This is Phil with Edward the morning after our son was born.  Overnight he had helped me to feed him, changed his nappy, settled him and by the morning we both knew as much about our new son as each other.  Why should any father be denied that?

KONICA MINOLTA DIGITAL CAMERA

ACTION: the goal of keeping families together to be at the forefront of maternity unit design.

ACTION: if your maternity unit does ask Dads & Partners to leave, please ensure that marketing reps are not allowed onto the unit at times when family members are not.  This is grossly unjust.

 

Overlooked

Just as women can be traumatised by the birth experience, suffer postnatally with depression and anxiety and feel overwhelmed by the responsibilities of parenthood, so can Dads & Partners.  Yet it was discussed on the group that men often don’t feel “allowed” to be traumatised or to be struggling.  There are connections here to other themes, as feeling disempowered at the birth can lead to problems later on for the partner.

Mark Williams campaigns for recognition of the needs of Dads & Partners when it comes to perinatal mental health.  This post on Stigma Fighters explains some of his journey.  This Fathers’ Day Mark is launching Dads Matter UK and is asking for the health service to “develop a process for the screening and detecting of PND in fathers.”  To read more about this campaign please have a look at this item from the Huffington Post.

Mark described to me what his own experiences have taught him about the needs of Dads & Partners:

“I feel dads need to know what is going on in order to help deal with their own anxiety – help from doulas could be a way forward. If you have a well dad or partner, you have a better chance the mother will be supported by them. Many fathers or partners I talk to just feel useless when dealing with the mother’s mental health, and sometimes that feeling of helplessness has an impact on them. Many dads isolate their true feelings so as not to upset the mother, or make matters worse.  They only want the mother of their child to be well and gain a full recovery.”

 Fathers Reaching Mark

ACTION: Follow @MarkWilliamsROW on Twitter and find out how you can join his campaigns.

ACTION: Recognise that Dads & Partners can suffer from perinatal mental illnesses too.

With best wishes to all the Dads & Partners out there, and to all those who are supporting mothers and caring for new babies.

Happy-Fathers-Day-Cards-3

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#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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#MatExp – Real or Not Real?

As we reach the middle of #FlamingJune I have been thinking about the week I’ve had. To be honest it has pushed my multitasking abilities to the limit: I have had a number of big events to attend or speak at, as well as the day job of being a divisional director at Kingston and a clinician seeing and caring for women – and this is before I even consider my husband and daughters.

Amongst all this I sometime wonder if #MatExp is really having an impact, or have I just got carried away.

It has been a tricky week for others too. The more people know about #MatExp and what we are trying to do the better, but this comes with pressure and also criticism.

It is hard to understand that this is an organic grassroots project with a direction and mind of its own. No one is ‘in charge’ and it is richer for it.

This was brought home to me at the London Maternity Strategic Clinical Network event held on Wednesday. The five pilot sites who had held a #MatExp ‘Whose Shoes’ workshop presented the action they had taken as a result and I was overwhelmed by the diversity of actions taken and the determination with which people had followed through in a multitude of ways.

Devolved leadership and true collaboration with women has been our hallmark from the beginning but I was bowled over to actually witness the results of all the actions gathered together in one place and to recognise how powerful the outcome of the workshops was.

At the same event we launched our ‘Maternity Experience’ film. It was a tense moment, it is so difficult when you are knee-deep in a project to step back and see it afresh and I wasn’t sure how others would find it. I so desperately wanted it to to be true to the workshops and #MatExp conversations we have had over the months.

Fortunately on the whole it seems to have rung true and be a success, which I hope will power more thinking and questioning on a daily basis of ‘why do we do it this way, what could we do instead?’

Rounding off my week I have had the small matter of conversations with the leadership of the Royal College of Obstetricians and Gynaecologists (RCOG) about how they could help, and a flying visit by Helen Bevan to Kingston on Thursday when she said ‘there was lots going on #MatExp yesterday, I got tweeted your film about 15 times!’.

It’s a roller coaster ride but I wouldn’t have it any other way. Each time I have a doubt something happens that reaffirms that however small , changes are actually happening. Just yesterday a midwife at Kingston told me her pledge from our October workshop will be completed next week. She has stuck with it through barriers and blocks and seen it to completion and that desire for action, that is what #MatExp is all about!

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Time to Act for Midwives

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 subjects we started to tackle early on was Birth Trauma. This was an insightful discussion about parental experiences, but it was mentioned that midwives can also be traumatised by their experiences of birth. We started a thread specifically to discuss this issue and for me it got to the heart of some of the problems facing maternity care today.

I was at a user group at Salford University in May where a group of parents discussed the midwifery curriculum with some of the lecturers. We talked about all of the things that parents want – compassionate care, informed consent, skin to skin, optimal cord clamping, breastfeeding support – the usual topics. One of the lecturers commented that they had been teaching all of these things for years, why were the same complaints and comments still coming back from parents?

I really feel that midwives’ experiences and the way that these are dealt with is one of the answers.

A comment that particularly resonated with the group was from a third year student midwife and I would like to share it here in full:

I agree, that the trauma for me is cumulative. Often a singular ‘traumatic birth’ is easier to process as the necessity for intervention is usually clearer, staff involvement/support is higher and women/families are offered enhanced care/debrief/support. It is the ‘routine’, less critical ‘procedures’ that affect me over time. The ‘heroic’ ARM, the VEs by doctors with inadequate consent, instrumental deliveries without compassion or the ignoring of important birth wishes (OCC for example). It calls into question your very notions of love, kindness and compassion. It hurts personally to see these violations of women, often by doctors. Usually it is not the ‘act’ itself but instead the loss of autonomy and consent that causes me so much pain. I also have noticed, how frequently these things are not noticed by women, because they don’t know it could be any different. And I feel that in that alone ‘we’, the system, have let her down. It took me a very long time to establish why I found the delivery suite so challenging. Now I understand that witnessing, sometimes being part of, repeated human rights violations is of course going to be distressing. It would be to anyone. The fact that this job is integral to my sense of self, identity, world view and beliefs makes the impact even greater. But I do think that without adequate support birthworkers (midwives, doctors, doulas, etc) may become detached or choose to leave the hospital setting to protect themselves. This has been my biggest challenge throughout my training and I know will continue to be as a NQM. I believe all birthworkers need nourishing support to continue to provide compassionate care. I have received this from a community of feminist birthworkers spread across the country but whose shared values inspire, support and encourage me. Having space held for me as a student midwife by fellow birthworkers has taught me more about how to provide loving care than almost anything else.”

A retired midwife commented “I’m old hand in some respects and you basically brushed yourself down and moved forward. The difficulty occurs I think in the future as over time as you find that the coping mechanisms aren’t working as well and you exist with a high level of adrenaline running around your body; it becomes more and more challenging to cope.”

Birth workers discussed crying in the toilets whilst at work, fire-fighting from one emergency situation to another, feeling vulnerable, angry and frustrated. Cutting costs and box ticking were mentioned and a lack of compassion amongst the management system, with policies slowly eroding midwives’ scope of practice.

As a student, I have found morale amongst midwives one of the hardest things to deal with. The majority dislike their jobs for many reasons (too many to list but management and politics play a huge part) and are unresponsive to students enthusiasm. I have even been told by mentors that they don’t like having student? This obviously has an impact on learning and emotions. When experiencing birth trauma with a midwife that shows no emotion, even after the event, it is hard for a student to deal with and can have a huge impact on students emotional/mental well being. That being said, there are some fantastic mentors. However, students leaving training due to lack of support is unacceptable.”

tall poppy

Immediate, short term actions:

  • Find out if your Trust has guidelines about supporting families AND staff after difficult births

  • If anyone has good guidelines from their Trust that they are able to share please let us know

  • Midwives at all levels to reassure one another that it is acceptable to have difficulties coping with some of the births that they witness, and to talk about coping strategies that they have found helpful.

  • Mindfulness classes to be offered to staff

  • Read The Roar Behind The Silence (and encourage colleagues and managers to read it) – many of these issues are discussed in the book and action points suggested

  • Use Random Acts of Kindness and Paying It Forward in your workplace to support colleagues 

Long term actions:

  • Consideration to be given to what will replace supervision of midwives if it is to be dismantled, in terms of who midwives are going to go to for support

  • Explore the model of Restorative Supervision 

  • We need a powerhouse of strong and courageous managers, midwives and students who are able to steer midwifery towards kinder more humane care keeping in mind our goal for physically safe and emotionally satisfying outcomes for women.” (midwifery student)

The emotional investment of midwifery takes its toll”

Further reading:

http://www.sheenabyrom.com/blog/2013/06/17/midwifery-in-the-nhs-my-opinion by Sheena Byrom

https://yestolifeblog.wordpress.com/2015/05/24/the-flourishing-touch-3/ by Jeannine Walsh Webster and John Walsh

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No need for permission to join #Flaming June – JFDI!

It’s nearly a week since lighting the fuse and setting off #FlamingJune with a bang. We launched our website and we are starting to see that ripple of action as a result as well as trying to draw on existing events and plans that we knew were happening in June.

It is getting people’s attention – perfect, just as we hoped! We are being quoted and used as an example, as a change platform, a campaign it’s awesome!

But in some ways we are victims of our own success we are just that bit too innovative and cutting edge so it is hard for people to understand just what we are.

We are not an organisation, we are not employed to do this, we have no funding, we have no rules or structure.

We are quite simply people. People who are like minded, people with initiative, people who see the need for change and want to enable it to happen by bring ideas together and encouraging action.

Some of us it is true are NHS employees however this work is not in our job description we are doing this in our spare time round busy day jobs and home life. Many of us are juggling this with other jobs, small children, home commitments, life… the thing that unites us is a passion and an energy to keep improving maternity services.

So if I were to define us, we are an ever growing fluid and flexible movement of people who want to enable change and improvement in maternity services.

There are no rights or wrongs, no one needs permission to join in, we are leading by default because we happened to step forward.

There is plenty more space for people to step in to help. The key message is to value and respect all views; encourage airing problems to find solutions and we will endeavour to help and support those who can and want to jump on board as best we can.

We have a lot of exciting days to come in June & beyond. Bring it on!

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