Maternity Experience

Month: July 2015

National Maternity Review – National Drop-In Listening Events

The National Maternity Review held its first listening event on July 23. #MatExp was represented by Flo, Gill, and Leigh. If you were unable to attend, you can read more about what happened in Gill’s fab, visual Steller story and Leigh’s blog.

The NHS Maternity Review wants to hear from everyone!

You are invited to come and share your views and experiences of maternity services and care.

The NHS Maternity Review will be hosting a number of events around the country as part of its national tour to hear how women, their families and advocates, provider organisations and the professional bodies involved in maternity care feel about the current services. We also want to know what you would like the Review Panel to bear in mind as our members go about their work. These events are an opportunity to share your experiences, contribute to the work of the Review, and have your voice heard.

The feedback from these events will contribute directly to the work of the Review and we are keen to hear from women, their families, those who work in maternity services and other professional bodies. All are welcome to come and share your views.

The Review will be visiting the following locations on the dates below. Final details for some of these events will be circulated in due course.

  •  Tuesday 4th August, 10am-7pm – The Lancaster Suite, Preston Guildhall & Conference Centre, Preston
  • Friday 7th August, 9am-4.30pm – Morton Park Family & Community Centre, Carlisle
  • Thursday 13th August, 10am-8pm  – Holyfields Centre, Birmingham
  • Tuesday 25th August, 10am-7pm – Acorn Children’s Centre, Taunton
  • Wednesday 26th August, 9am-7pm – venue tbc, Plymouth
  • Tuesday 1st September, 9am-7pm  – St Nicolas Centre, Ipswich
  • Wednesday 2nd September, 9am-7pm – The Kings Centre, Norwich
  • Friday 4th September, 9am-7pm  – venue tbc, St. Albans
  • Thursday 17th September, 10am-7pm – venue tbc, Sheffield
  • Friday 18th September, 10am-7pm venue tbc, Manchester
  • Monday 21st September, 10am-7pm – venue tbc, East London
  • Wednesday 7th October, 10am-7pm – venue tbc, Newcastle

 

For more information, please contact maternityrsvp@luther.co.uk (who are organising the events for the Review).

 

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#MatExp in Numbers and Pictures!

Our ‘small pilot’ MatExp has been going really well…!

Here are some quick facts, figures, and graphics:

  • Since the website was launched in June, we have had more than 7,000 hits!
  • There are more than 700 members of the #MatExp Facebook group, generating very constructive discussion
  • We had 24 action selfies for #FlamingJune
  • 16 posts added to our action linky during #FlamingJune

We tried to capture everything from #FlamingJune in a picture – there’s so much but we gave it a go!

  • #MatExp has seen more interaction on social media than ones about similar issues (not that it’s a competition, but what is so brilliant about #MatExp is that there is no limit to the number or type of people who can get involved because it’s by everyone, for everyone).

compare

This next stat is VERY exciting:

  • Since #MatExp started being used as a hashtag there have been – drumroll please…

numbers

Yes you read that right – more than 152 million!

(Impressions means that Tweets bearing the #MatExp hashtag would have been seen on that number of timelines)

Guys and St Thomas’ Hospital held a Whose Shoes workshop, and seems to have inspired everyone who went, with 100% of attendees saying it would impact on their practise!

Members of the #MatExp community have been busy putting into action improvements relevant to their own hospitals:

Being the language champion, I’ve been heartened to see so much chat about the issue with people from all sorts of professions and specialties taking on board the importance, value and impact of language.

I love this:

Other language – such as ‘allow’ and ‘fail’ can have a devastating, enduring effect on a woman.

Culture can take a while to transform, of course, but the fact that we are able to have such conversations, and so openly too is a very positive start indeed.

I was delighted to find this paragraph below on a site called lulubaby, which offers a range of courses to ‘prepare you for life with your baby’.

Words of common sense – “…you cannot sadly guarantee yourself a ‘natural birth’, even with the greatest willpower and determination…” fill my heart with joy. No mention of ‘low risk’ or ‘high risk’ either – let’s hope such common sense becomes much more common!

lulu

Never forget….

I am incredibly proud to have been named in the HSJ’s list of Patient Leaders, along with Ken Howard who designed our brilliant logo, and Alison Cameron, revolutionary extraordinaire.

Next week, I’m attending the listening event, the first of the National Maternity Review team’s activities. I’m going to be there as part of #HugosLegacy as well as #MatExp – I’ll be sharing my own experiences as well as thinking about how #MatExp can connect with the National Maternity Review team to make things happen. Flo and Gill are coming too – we spend so much time connecting on social media, it’s great to be able to catch up face-to-face sometimes too.

So! We’ve been rather busy. Which is why we have been seeking ways to create more hours in the day, such as getting a job lot of time-turners, like Harry Potter’s Hermione.

And we’re going to need them, because after the summer we have LOADS of exciting things going on, such as NHS Expo, and a #MatExp conference – watch this space! I’m looking forward to meeting even more of the #MatExp community, many of whom have become friends at these events.

All of the #MatExp community are busy doing something positive every day, of course. A huge THANK YOU to you all. IMG_20150526_190834These are for you for taking the time to get involved, share your stories and to make a difference to women, babies and their families. Forget-me-nots are very special flowers!

There is so much going on – Helen, Emma, and Susanne are also capturing as much as they can in their fab posts; it’s impossible to capture everything, but please know that every action and activity, whether big or small is greatly appreciated.

A couple of final thoughts…

You don’t need to ask for permission (besides the obvious!) – JFDI!CJAnPM5WUAEeFjI and always remember…

CJ5AgxgWIAACyso

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Time to Act for Continuity of Care

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.

Over the last six months two big themes have emerged from #MatExp for me. The first is WHY are so many age-old issues still a problem for maternity care in this country? The answer to me is the working environment midwives face, as discussed here. The second is HOW can we make a real difference to family’s maternity experiences? So many actions have come out of #MatExp but the one that stands head and shoulders above, in my opinion, is continuity of care.

I don’t mean Ed Milliband’s diluted version of “the same midwife throughout labour”. I mean the same midwife antenatally, during labour and postnatally, or the same team of two or three midwives for the whole of that period. Women who hire independent midwives or who have access to OnetoOne Midwives have this type of continuity antenatally and postnatally, but they only have those same midwives during labour if they give birth at home. IMs and OnetoOne are not insured to act as midwives in hospital settings, although they can accompany women to hospital as advocates. Doulas are also with women as advocates and support for the whole of their pregnancy, birth and postnatal period but they are not qualified to act as midwives.

Continuity

When I brought up continuity of care as an ACTION thread on Facebook, I asked the following questions:

  • What are the barriers to providing continuity of care on the NHS? Is it as simple as not enough midwives, or is there more to it than that?
  • As an anxious person I really prioritised continuity of care, so used an independent midwife in my first pregnancy and a OnetoOne midwife in my second. What would my options have been on the NHS, under what circumstances can women be put onto a one-to-one care pathway?
  • What ACTION can we take to make continuity of care a reality?
  • What ACTION can we take to build good relationships between women and their midwifery teams where continuity of care is NOT a reality?

The suggested actions from the discussion that followed were:

  • Demonstrate the benefits of caseloading to NHS midwives
  • Strong leaders at the helm of trusts who themselves understand how to implement and lead their midwives into wanting continuity of care
  • NHS trusts to talk to independent midwives and social enterprise midwives who are the knowledgeable ones when it comes to providing continuity
  • Think about options for a team approach. One group member directed us to look at the Streatham Valley midwife team: “They were part of a pilot scheme for community midwives where you saw the same midwife and often they came to you for booking in and later appointments. They also checked you at home when in labour to avoid wasted trips to hospital and they have an excellent home birth record. Out of my ante natal group of 5 first time mum’s none of us had anything stronger than gas and air we had one home birth and only one use of forceps. They are amazing.”
  • Understand the positive impact that continuity of carer can have on patient safety and infant mortality
  • Find ways to care for midwives and avoid the “burn out” that is often associated with a caseloading model of working
  • Women with more complex pregnancies to be caseloaded by a team expert in their complexities – in other words, being at a higher risk of complications should not exclude women from continuity of care, in fact if anything these women need it more
  • Consider personalised budgets ( i.e. the NHS would allocate a woman funding to choose the service they wish) and whether or not this concept could help in delivering continuity of care
  • If continuity is not available then note-keeping needs to be excellent so women don’t always have to repeat themselves (which can be particularly hard following baby loss), and so that plans can be discussed and followed up
  • Women who are vulnerable or at risk of perinatal mental health problems should be at the front of the queue for continuity of care
  • Ensure that families are aware of and understand any choices they do have when it comes to their maternity care team

One healthcare professional commented “The commonest refrain you hear from mothers these days is ‘I never saw the same midwife twice’; this is a great sadness to me as surely the greatest gift to mediate the stressful vocation that is midwifery, is the relationship you develop with your ladies.”

Another woman who had opted for independent midwifery care in her second pregnancy commented “I just needed to know that someone was going to know me personally and take my wishes/needs seriously.”

Continuity of care was the strongest theme in the feedback to the National Maternity Review provided by my private Facebook group. It comes up time and again in discussions – I was discussing it today with student midwives at Salford University and they agreed that many midwives want to work to a caseloading model as much as families do. It just has to be constructed in a way that makes it feasible for midwives, many of whom have young families themselves.

Campaign for Choice
Campaign for Choice

This is not news. The RCM’s Better Births campaign has continuity of care as one of its key themes. The demand for caseloading from families accounts for the popularity of OnetoOne midwives in the areas where they are commissioned. A group of mothers in Greater Manchester is campaigning for the local CCGs to make this service available to women, and as someone who has benefited from that company’s care I joined them on a demonstration in Manchester city centre. If continuity is not going to be available on the NHS then OnetoOne might be the best option for families, although as this post of mine shows not all women find that the various services work together. 

What I find striking is how much continuity of care would impact on other areas where the #MatExp campaign has asked for ACTION. Anxiety is reduced if women know their carers. Emotional well-being is improved as are infant feeding outcomes. Dads & partners have more chance of being involved and having their own struggles recognised if they are able to get to know the family’s care team. It will be far easier for midwives and health visitors to collaborate if it is clear who is looking after which families.

I was delighted when an insurance solution was found for independent midwifery in this country. I also have high praise for the model of care provided by OnetoOne. Support and advocacy from a doula can be invaluable. But continuity of care should not be on the periphery of the UK maternity experience. It should BE the UK maternity experience.

 

Helen Calvert

@heartmummy

2015

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Time to Act for Better Collaboration with Health Visitors

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.

As a result of the day to day experiences of the mums on my Facebook group, I have been in touch with a number of senior health visitors to discuss the service and how it can potentially be improved. I presented to a group of health visiting managers in Greater Manchester last week, thanks to an invitation from Jill Beswick, and have been asked to speak to the new health visiting students at MMU in the autumn. For some of my thoughts on health visiting please see these three posts on my personal blog:

Health Visiting: Quality and Quantity

Health Visiting: Tell Us About It

Health Visiting: Keeping Everyone Happy?

456 6Cs

Jenny Harmer has written this very useful blog post about what a health visitor’s role entails. In terms of a family’s maternity experience, it is the health visitor who is responsible for their care for the first five years of the child’s life, and they certainly focus on the 1001 Critical Days, or from conception to age 2. They are currently focused on transition to parenthood, breastfeeding, healthy weight and maternal mental health (as well as accident prevention and school readiness) – these are topics crucial to a family’s maternity experience and issues that crop up again and again when families discuss postnatal care.

So we would hope that health visitors are working closely with midwives and other birth professionals to ensure a smooth transition to parenthood and ongoing care and support. Unfortunately, this is not what parents are routinely reporting, as I mentioned in my blog post for Sheena Byrom’s series, What The National Maternity Review Team Needs To Know. When I introduced this topic on the #MatExp Facebook group I asked:

  1. Midwives – are you aware of the health visitor’s role, their 6 High Impact Areas and the ways in which they can help families? Are you aware that many now offer antenatal visits? How do you work with health visitors, hand over to them and so on?
  2. Health Visitors – those who are already doing antenatal visits, are these done in conjunction with communication with the family’s midwifery team? How do you work with midwives postnatally to ensure a smooth handover for families?
  3. Parents – how well did your midwifery and health visiting teams work together? Have you examples of best practice? Where are the gaps?
  4. Everyone – how can we ACT to make improvements in this area?

The actions suggested were:

  • Pathways to be put in place for communication and handover from midwives to health visitors
  • Close working relationships between midwives and HVs so that each team can phone the other to access additional support for families
  • Student midwives to go on visits with health visitors to understand why collaborative working is so important
  • Best practice is for HV teams to have monthly meetings with midwives and GPs, and for midwives to ring the HV team about every discharge so they have a full picture for postnatal contact
  • Joined up IT systems – HVs currently use different systems to the maternity units, so they have no chance to check through maternity notes and only receive basic demographic information about families
  • Continued and consistent support for mums re infant feeding during the first six weeks
  • 7 day a week health visiting service to truly meet the needs of families
  • NNU and other hospital departments to inform health visitors if babies have been born early or sick so that HV can offer support to the family
  • Websites with all of the local maternity information for families, including health visiting services; better signposting from all NHS teams to other groups and sources of support available to families
  • Midwives to inform mothers at booking and during pregnancy that they will be offered an antenatal visit from the health visitor, and that it’s a good opportunity to discuss pregnancy and feeding methods, alongside other parenting issues. If it was part of the schedule given it would become normal – antenatal appointments with HVs are now offered to all pregnant women and dads/partners are encouraged to be present – it’s a holistic assessment
  • Midwife @JennytheM commented “I was on a study day about supporting vulnerable families and the importance of contacting the Health Visitor in such cases was reiterated – an electronic discharge pings to a GP and I’m going to find out if that can also go to the Health Visitor = instant information about discharge – which would help prevent communication failures.”

NHS England (West Midlands) has launched a campaign to raise awareness of the role of health visitors: http://www.bcpft.nhs.uk/about-us/news-and-events/529-campaign-launches-to-raise-awareness-of-health-visitors-and-thier-five-key-visits I hope HV teams continue to clarify their role in this way, both to families and to other birth professionals.

Commissioning of health visiting services moved from NHS England to local authorities on 1st October 2015. It is important that the birth community and families alike recognise what HVs have to offer so that their services continue to be provided across the country. Health visiting teams are responsible for 100% of children born in the UK. It is a massive remit, and one that can have a significant impact on public health if used to its full capacity.

 

Helen Calvert

@heartmummy

2015

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#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

Woman-asleep-with-books-002

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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What does it take to build a change platform? A year ago I had no idea. #MatExp

What does it take to build a change platform?
by Gill Phillips

If you had asked me this question a year ago, I would probably have said that I had no idea. And yet a year later, it seems that that is what we have done. On Friday we were absolutely delighted when Helen Bevan and team included #MatExp as one of the top change platforms in a global webinar.
MatExp - change platform


I was sitting last night contemplating this. Then serendipity struck when Jodi Brown, who had co-hosted the webinar with Helen, posted this tweet:


Jenny's bottle of matexp wineI think a big part of my philosophy is not to try to ‘bottle’ something that is a bit magic – other than in this wonderful #MatExp bottle distilled by Jenny Clarke. 😉 People want to feel part of growing something themselves rather than just taking on a formula dreamt up by others, however successful it may be. It always felt like a let-down on Blue Peter when they said “Here’s one I made earlier” and all the fun of discovery was removed.

Similarly, whilst it felt exciting to read a tweet the other day saying that our Whose Shoes? workshops should be ‘mandatory training’ for all, this goes directly against what I am desperate to achieve, which is to help people, users and healthcare professionals, devise and own their own solutions, working together as equals. It can never be a top-down approach.

Florence Wilcock wrote:
Florence Wilcock wrote:
“A very small pilot….!”

The #MatExp journey has been and continues to be extraordinary. Starting as a planned ‘very small pilot’, it has combined the energy of vibrant workshops with the speed and connectivity of intensive social media.

I started using the #MatExp hashtag back in about September 2014 and registered it with Symplur as a way of monitoring its reach. I had previously done this with #dementiachallengers, so knew this would be be important.

I am somewhat blown away by the fact that #MatExp now has over 144 million Twitter impressions.

It has created a virtuous circle. People tweet photos of the workshops, make positive comments about the experience and take real action. As other people see this and pick up the energy, they too want to get involved; as more people get involved, the workshops get even better. In the jargon ( I am not a fan of jargon) we ‘pull’ people in rather than telling them what they should do.


Bazaar - Helen BevanSome of the slides that Helen Bevan included really struck a chord with me.
I absolutely love the idea of comparing building a change platform to running a bazaar. You cannot see anyone in charge but no doubt someone somewhere has thought to get it started in the first place … and then perhaps would be in a lot of trouble if they tried to stop it!

A bazaar is such a colourful, vibrant and slightly chaotic image – it describes #MatExp perfectly.

As you may know, I am not one for a lot of rules. So here, in an unusual ‘tip of the hat’ to a popular formula, I decided to write a kind of ‘List of 10 things’ – the first 10 things came into my head rather than anything more scientific. The whole thing has been a fantastic team effort – the ‘core’ team from the project as originally envisaged made so much stronger by all the fabulous people who have stepped forward as leaders as the campaign has progressed. I have missed loads of things out, for which apologies, but there is masses of #MatExp stuff on the internet so it is pretty much all available to someone wanting to do their own research…

TEN (or perhaps a few more) THINGS…

Toolkit pic

  • We produced a toolkit to support the use of the board games – practical help with running future events.

 

  • We ensure that everyone has a voice – all perspectives are equally valued.

  • We were invited to be one of the supported NHS change day campaigns. They came to film us talking about #MatExp and what we are all trying to achieve.
    [youtube https://www.youtube.com/watch?v=P4upEK33_0U&w=560&h=315%5D
  • We gave the team a few headaches as we wanted to include so many actions. We had a team of people – about 50/50 health care professionals and ‘users’ leading the different actions. These ranged from Skin to Skin and optimal cord clamping at the time of birth, to good practice around communication, supporting mums and families post-natally (including depression) and many other topics.

Click here for the visual story of the Guernsey workshop – including some photos of the beautiful island!

Not sure if that was 10 things. 😉

We have a lot of fun. Online friendships have become real friendships. Collaboration is strong. We encourage each other – and egg each other on. We are impatient for change.

I am not sure how the whole #Matexp change platform can really be evaluated. I think the NHS London Strategic Clinical Network are evaluating the project that they originally commissioned. I think the NHS Change Day people are evaluating the impact of the change day campaigns but hopefully can include the whole project in some way. We will find out more shortly, I think. I find it impossible to separate out different elements – and I think this is the nature of a change platform. I am really hoping that someone can get their head around the whole totality and evaluate accordingly.

Oh and I think I may have graduated from the School for Health Care Radicals last week, in which case I am very honoured. I didn’t get round to buying my gown and high heel shoes in time and unfortunately missed it when I was away at my first maternity conference. It was a JFDI conference pulled together from nowhere by Jane Pollock, @midwife_jane, a fantastic midwife.

And again some of the Twitter friendships became real life friendships.
https://www.facebook.com/catchingbabies2/posts/979395852092861

Including me FINALLY meeting Sheena Byrom! 🙂

https://twitter.com/DeirdreMunro/status/616948403377991685

I hope you are inspired to join #MatExp – or to build your own change platform. Post a comment to encourage us – and there are plenty of people here ready to encourage you too!

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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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