Maternity Experience

well being

#MatExp Whose Shoes? update

Some really exciting developments with #MatExp Whose Shoes? at the moment.

Bromley MSLC produced a ‘one year on’ report following up on their Whose Shoes? workshop at King’s College hospital using “I said, I did” as a framework to list all the fantastic outcomes that had come from pledges made on the day.

Language continues to be a big issue for women and families, but some great initiatives are now happening. Building on the Whose Shoes? workshops, Leeds and Colchester in particular are working on specific language challenges. I came up with a ‘Negativity Bingo’ and had great fun with my team at the NHS Fab Change Day #DoAthOn event launching #DumptheDaftWords.

I have been getting some exciting invitations to speak about building social movements and of course gave #MatExp a big shout out in my talk at the launch of #AHPsIntoAction, they have invited me back for a longer keynote session at their annual conference in June.

More hospitals are coming on board with the Whose Shoes? approach – the energy is particularly strong in London, the West Midlands and the South West regions. It has been great to present on several occasions now with Catherine MacLennan and Emma Jane Sasaru and to see people learning so much from their courageous sharing of their lived experience.

Last Friday, 3 Feb 2017, we were invited to present a #MatExp Whose Shoes? session to get some good discussions going as part of a packed event launching #PanStaffsMTP in Stafford. We concentrated specifically on continuity and perinatal mental health. This is the county-wide transformation programme to improve maternity experience in Staffordshire to implement the national ‘Better Births’ vision. This informal film gives you a flavour.

We are proud of the crowdsourced ‘Nobody’s Patient’ project and thank everyone for your fantastic contributions. We now have over 120 new Whose Shoes? scenarios and poems and the new resources will be made available shortly to all the hospitals who were existing customers. Florence Wilcock, Sam Frewin and I are finalising the supporting toolkit and collating the case studies, ahead of our ‘wrap up’ event in March. We are trying to pull together lots of ideas for positive change, with or without a workshop. I hope you are enjoying the regular Steller stories, including Florence’s monthly reports.

Wonderful to see everyone doing such amazing work, speaking all over the place, building networks, spreading the word and generally making great things happen.

Keep up the good work!

Gill Phillips @Whose Shoes

Share the Word About MatExp!

#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.

pull-quote-alone

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.

familybw1800x1200
Tongue tie support http://tonguetieuk.org/network/ 

Emma Jane Sasaru

@ESasaruNHS

Share the Word About MatExp!

#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.

IMG_5935

Emma Jane Sasaru

@ESasaruNHS

 

Share the Word About MatExp!

#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

Click here to add more actions

Emma Jane Sasaru

@ESasaruNHS

 

 

 

Share the Word About MatExp!