Maternity Experience

Environment and Facilities

It is time to talk about the ‘perinatal’ aspect of Perinatal Mental Health (PMH): the ‘missing link’ in the national campaign

I am delighted to be able to publish today a guest blog for the #MatExp campaign from Mr Raja Gangopadhyay.  Raja is a Consultant Obstetrician and Gynaecologist with special area of clinical interest in Perinatal Mental Health (PMH) from West Hertfordshire Hospitals NHS Trust. He is a member of the Royal College of Obstetrician and Gynaecologist (RCOG).

Raj capture

I would like to take this opportunity to share my views on why I feel so strongly about the role of the Maternity Services in Perinatal Mental Health (PMH).

Perinatal Mental Health (PMH) has two important components in its terminology: ‘Perinatal’ (period during pregnancy, delivery and post delivery) and ‘Mental Health’. Therefore the care of mums in the Maternity Services during this vital period is of utmost importance in PMH: it should be a no-brainer.

But sadly, PMH is the only one area of Maternal Health where I do not see a strong voice of the Maternity Services in the national campaign.

This has remained ‘Cinderella’ within Maternity Units in spite of the glaring facts:

  • PMH is still one of the leading causes of maternal death in the UK.

  • This is one of the most prevalent conditions mums suffer from during their pregnancy and postpartum period (at least 10% of mums suffering from this).

I strongly believe that without robust ‘perinatal’ care, women would continue to suffer and die from PMH illnesses, no matter how much we spend to expand specialist Mother and Baby Units (MBUs).

Therefore this is the time when we must recognise this important area and raise awareness.

I am trying to address this issue through my campaign on social media and as the Royal College of Obstetrician and Gynaecologist’s (RCOG) Representative to the Maternal Mental Health Alliance (MMHA).

What do I mean by PMH ‘within’ Maternity Services?

Suffering and deaths from PMH illnesses are often preventable if appropriate measures are taken during pregnancy and in the immediate postpartum period.

A prevalent health condition like PMH must be managed with the same readiness as managing other medical conditions in pregnancy such as diabetes, high blood pressure (pre-eclampsia) or heart disease.

The only way to ensure that the women with PMH are appropriately cared for according to the NICE guideline (2014) is to have:

  • A dedicated PMH team within every Maternity Service:

A Consultant Obstetrician, Specialist Midwife, a Perinatal Psychiatrist, a Specialist Psychiatry Nurse and a Paediatrician should jointly lead this service locally. The service should be easily accessible to the mums.

  • A dedicated Obstetric-Psychiatry Antenatal clinic

  • Communication with Community Team:

This Maternity Service should have clear links with GP, Health Visitor (HV), community MH Team, Liaison Psychiatry services, Mental Health Crisis Team, Children and Young People services, Peer Support groups and other charitable organisations.

  • Robust Care Pathway:

There should be a clear pathway for risk assessment (at the booking visit and at every consultation), early identification and treatment. There also should be provision of a multi-professional team meeting on a regular basis.

  • Dedicated specialist service and support:

For conditions such as PTSD / birth trauma, fear of pregnancy and child birth (‘tocophobia’), bereavement and support for mums and dads whose babies are admitted to NICU.

  • Pre-pregnancy advice service:

It is important to have specialist advice and support for women (with PMH illness/ traumatic experience in previous pregnancy) who are considering pregnancy.

  • Patient involvement : ‘Patients first and foremost’

PMH is an area where patients’ opinion must be considered in developing local care pathways. Services must be evaluated on a regular basis based on patient experience.

I firmly believe that all the health conditions should be treated in the same way with professional expertise and kindness and without any prejudice. I am not sure why we still classify health conditions into ‘physical’ and ‘mental’ when there is often an overlap.

Psychological care in pregnancy, delivery and beyond…

It is unfortunate that psychological care has remained a very neglected part within Maternity Services. The reason given for this is ‘the staff are too busy’.

However pregnancy is probably a period of life where psychological support from the HCPs is needed the most.

It is especially important when mums could potentially have severe stress during pregnancy and the postpartum period due to the following factors:

  • Previous history of miscarriage, ectopic pregnancy, IVF, traumatic childbirth.

  • Any other family member or friend has had complicated childbirth experience.

  • Sudden life event such as breakdown in family relation/divorce, loss of employment, bereavement in the family or loved one, relocation/migration and domestic violence.

  • Sexual abuse in childhood or pregnancy as a result of sexual violence.

  • Associated pregnancy complications (for example premature rupture of membrane, high blood pressure, diabetes, concerns on baby’s growth or SPD).

PMH is not only PND and Puerperal Psychosis (PP)…

Many believe that PMH is a term equivalent to the care of Postnatal Depression (PND) and PP.

PMH includes specialised care for women (during pregnancy and one year after the childbirth) with any mental health condition (such as anxiety, depression, bipolar illness, schizophrenia, OCD, eating disorder, and personality disorders).

PMH must include bereavement care (miscarriage, still birth and neonatal death), traumatic birth experience/PTSD, support services for mums and dads whose babies are admitted to NICU and tocophobia (fear of pregnancy and childbirth).

Another important component should be the psychological care of mums and dads throughout the journey of pregnancy, delivery and postpartum period.

PMH, in my view, must be recognised as a separate subspecialty in the training of Obstetricians and Midwives.

Womb

Why is identification in pregnancy and immediate postpartum period so important?

  • Effects of psychological stress in pregnancy:

There are now plenty of research results, which indicate the long-term impact of stress during pregnancy on the brain development of the baby while it is in mum’s womb. Prof Vivette Glover, an eminent Professor of Perinatal Psychology from Imperial College London, explains this: http://www.beginbeforebirth.org/for-schools/films#womb

Therefore timely intervention and adequate support during pregnancy can prevent long-term effects on the child.

  • Care Planning to prevent serious illness:

All pregnant women with risk factors to develop worsening mental health conditions should have a plan of care during delivery and postpartum period.

Confidential Enquiries into Maternal Deaths have repeatedly pointed out that in the majority of cases of deaths from suicide, there is a lack of care planning during pregnancy.

This is only possible through appropriate care within the Maternity Services and multiagency communication.

  • Enjoying the journey of pregnancy:

Experience of pregnancy and birth creates a lasting memory for the mums and dads for the years to come. Therefore this should be an enjoyable experience for the woman and her family to cherish in happiness in the future.

As HCPs our role is to ensure we support and empower women to make informed choices for the safety of her and the baby and most important of all a very positive birth experience.

  • Helping mums to make informed decision regarding medications:

Mums should get proper advice regarding the use of medication in pregnancy and after delivery.

Pregnancy is a short window but an excellent opportunity to address health conditions.

  • Bonding and attachment:

PMH conditions can adversely affect the bonding with the baby and the mum.

‘A stitch in time saves nine’: Prevention of serious PMH illnesses is only possible through good care in Maternity Services.

Guardian capture

Having discussed the importance of the role of Maternity Services in PMH, now let us find out what is happening in the Maternity Units……

A journey of revelations…

I contacted many Maternity Units across the country to find out the provision of PMH services within their Units. What I found was extraordinary.

I raised my concerns in a letter published in The Guardian: http://www.theguardian.com/society/2015/oct/14/perinatal-mental-health-provision-badly-lacking .

I raised this issue with the Maternity Review Team, during my meeting in September (2015).

Although there are examples of good service, the overall structure within the Maternity Units is very poor:

  • Often there is no dedicated Lead Obstetrician and/or Specialist PMH midwife

  • Many Units do not have formal debriefing services (for traumatic birth experience), specialist bereavement midwives and support system for parents with babies admitted to NICU.

  • There are hardly any dedicated services for women with fear of childbirth.

Delving deep into the challenges….

To have a better understanding of the need, I embarked on a journey to meet professionals from all the relevant Royal Colleges (RCOG, RCM, RCPsych, RCGP), Health Visitor organisations, Maternal Mental Health Alliance (MMHA), MPs and All Party Parliamentary Group (APPG), NHS England, CCGs and other national Campaign Groups.

It was revealed that overall there is very little understanding of the vital role of the Maternity Services in PMH.

Thankfully RCM is campaigning for a Specialist Midwife in every Maternity Unit.

But the main barriers are the following:

  • Lack of Mapping of the existing services in PMH within Maternity Units (such as the MMHA map of the available Perinatal Psychiatry services).

  • Lack of a national standard of the service provision within Maternity Units (according to the number of deliveries and complexity of cases).

  • Poor collaborative work among HCPs: as often the Maternity Electronic record system is not accessible to other HCPs and vice versa.

  • Lack of standard Training programme for the Obstetricians and the Midwives.

  • Lack of adequate focus on PMH illnesses in Antenatal Education.

I have concerns that unless these issues are resolved appropriately, we cannot provide the best quality of care for women with PMH illnesses.

With the best of my abilities, I am currently working closely with other national organisations to address these areas.

Maternity HCPs: Please, please do something and don’t wait for things to happen….

Charles Dickens

It is true that funding is necessary to set up specialised PMH services and Mother and Baby Units (MBU). However Maternity Units should not wait for the approval of their business cases.

In my humble opinion, funding is not everything. Our professional values are the most important factors in patient care:

  • Kindness:

Simple measures such as a smile, empathy and a willingness to listen to the concerns of the mums and dads could make a huge difference in patient experience.

  • Communication:

Take every opportunity to explain the situation and ensure that appropriate wording is used during communication.

  • Continuity of care:

Try to ensure continuity whenever possible or communicate adequately with the rest of your team.

  • Local Alliance:

Please try to develop Local Alliances with Community Midwives, Health Visitors, GPs, all available community mental health services, Peer Support groups and children’s services.

This could significantly improve communication among the multi-agency teams in caring for mums with PMH illnesses.

  • Listen to concerns:

Please create opportunities to listen to the concerns of the user group. This may be in the form of promoting your local Maternity Service Liaison Committee (MSLC) or Patient Panels.

If possible, please read the real life stories of the Lived Experiences on the Internet: it would help you to think ‘outside the box’, have a better insight into the PMH illnesses and give you inspiration.

  • Raise awareness:

Arrange patient engagement events, Road shows or Community Events with local CCGs.

Participate in Social Media support, such as #PNDHour (Wednesday 8-9pm) and #BirthTraumaChat (Monday 8-9pm):

This would help to raise awareness, remove stigma and give mums and dads a ray of hope.

  • Arrange training on PMH:

Please ensure all staff are adequately trained in your local Units.

  • Get involved in your Regional PMH network:

Many regions now have regional PMH Networks. This could be an important place for information sharing among the Maternity Units.

  • Please do not forget dads:

There is now good evidence to support that dads can suffer from PTSD/PND. Please take every opportunity to support and communicate with dads.

  • Keep yourself updated:

PMH is a rapidly evolving area; therefore HCPs must keep their knowledge and skills up-to-date through continuous professional development.

If unsure, please seek help and escalate to your senior colleagues: an unsafe advice from a HCP could endanger an invaluable life.

Working together to make a difference…

We ALL need to work together to prevent suffering and death from PMH illnesses.

If you have any suggestions for improving PMH services within Maternity Units, I would be very keen to know (Twitter: @RajaGangopadhyay3).

If you are involved in good projects locally or are aware of any good practice, please share with everyone through #MatExp.

Acknowledgement

I am grateful to #MatExp for giving me this opportunity to write this blog.

I am immensely grateful to all the Lived Experiences for sharing their stories, which have enriched my knowledge on PMH much more than any textbook and journal article.

My thoughts are with all the bereaved families who have lost their loved ones due to this dreadful illness.

Raja Gangopadhyay

2015

 

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#OxyOct BOOM! What have we all made happen?

Leigh Kendall opened this month for #MatExp with a call to action for Oxytocin October. The campaign is always action focused and we are keen to hear from anyone who is doing something to improve maternity experience in the UK, be it something big or something small. Yet we had already put together a number of blog posts with calls to action, back in #FlamingJune. So I decided that my action for this month would be to revisit those blog posts and find out what progress has been made.

Flo Collage

The original blog posts were on these subjects (each subject links to the relevant post):

Having re-shared the posts on Facebook and Twitter I was delighted to see the responses coming in detailing what has changed, what has been started and what is continuing to be done. Take a look!

Perinatal Anxiety

Sarah McMullen of the NCT explained that she invited Emily Slater (MMHA Campaigns Manager) to speak and run a workshop at the NCT national conference – to raise awareness and inspire action. Sarah says that Emily’s plenary talk to 600+ staff, practitioners & volunteers “was incredibly powerful, and we’re meeting to discuss next steps for NCT”. Sarah added “We’ve also submitted two funding applications relating to mental health awareness (thanks to Rosey Wren for support), and have match-funded a PhD studentship with the wonderful Susan Ayres on Birth Trauma, and are supporting another PhD research project on group identity and PTSD”

Midwives on Twitter commented:

Anxiety capture Deirdre

Anxiety capture Jeannine

To read Jeannine and John’s blog post please click here.  “You matter. I care.”

Emotional Wellbeing

Birth Trauma Chat

#MatExp team member Emma Jane Sasaru has been incredibly active over the last few months.  She has launched Unfold Your Wings a place of information and support aiming to raise awareness of Perinatal PTSD, birth trauma, reduce stigma and give sufferers hope.  She has also launched a CoCreation Network community around perinatal mental health.  Emma has then collaborated with #MatExp team member Susanne Remic to bring about a weekly #BirthTraumaChat on Twitter run jointly from Unfold Your Wings and Maternity Matters.

Sue Henry

Also launched this month by West London Mental Health NHS Trust was this fantastic short film about perinatal mental health: https://vimeo.com/143359951 This film has already sparked many useful conversations.

PMH

Continuity of Care

I was speaking to a commissioner from Cheshire this month about the decision to commission OnetoOne Midwives. The company has this month posted an overview of their caseloading model: http://www.onetoonemidwives.org/_news/caseloading-midwifery-an-ever-evolving-model-of-care

In her talk at a recent National Maternity Review event, Baroness Julie Cumberlege made it very clear that the call for continuity of care is being heard by the review team up and down the country. Neighbourhood Midwives led a discussion at the review’s Birth Tank 2 event, and there were a couple of other discussions where options for continuity were also explored.

Support for Midwives

Poem from banksy midwife @JennytheM:

Midwives JennytheM

Midwife Deirdre Munro celebrated the launch of the new Global Village Midwives website this week. The movement is over a year old and Deirdre explains:

GVM capture

global village midwives

Infant Feeding

Lots of news about infant feeding from passionate individuals and voluntary organisations.  On our #MatExp Facebook group Zoe Woodman explained: “In May we got approval from NCT to run a branch funded feeding support group. Started in June with an NCT bfc attending who is also an IBCLC. We are on 3 boundaries in terms of commissioning services so no local peer to peer style support groups were running within 8miles. The only service is an HV clinic once a week and it’s one on one so you have to wait outside the room to be seen. It’s been on our branch aims at our AMM since I’ve been chair (4yrs!) so finally chuffed to see it in action and I will get to use it myself in January for no3! It’s running twice a month currently but hope we can get funding in the future to run weekly. It’s slowly building in terms of attendance. Feedback so far is great!”

Dorking NCT

Claire Czjakowska’s Breastfeeding Advert is coming together and is looking very exciting – watch this space!  Breastfeeding in Trafford launched its Twitter account this month so please follow for local breastfeeding news.  BfN Portsmouth tweeted:

Bf capture

Midwifery students at the University of Worcester have launched a petition around the questionable practices of infant formula companies – follow the hashtag #WeakenTheFormula for more information.

As if this wasn’t enough, this month has seen the launch of the World Breastfeeding Trend Initiative for the UK.  A committed group of individuals from the major breastfeeding voluntary organisations have come together to measure the country’s performance against the WHO Global Strategy for Infant and Young Child Feeding.  Please visit the website for more information on how this project is structured and the indicators against which the UK will be measured.  The project needs lots of input from families and professionals so please follow @wbtiuk on Twitter and find out how you can help.

WBTI capture

Tongue Tie

Doula Zoe Walsh updated us: “We held a North West tongue-tie workshop in Blackpool. It’s now going on the MSLC agenda for Blackpool so that we can discuss local provision and see if it’s meeting the needs of local families.”  

Breastfeeding and Medications

Friend of DIBM helpline

From a personal point of view, I finally got around to becoming a friend of the Drugs in Breastmilk Helpline this summer.  The helpline is absolutely vital for ensuring that women get the correct information about what medications they can use when breastfeeding.  The service is funded by the Breastfeeding Network and the charity once again asked supporters to do a #TeaBreakChallenge this month to help raise donations.

Teabreak challenge

A wonderful #MatExp collaboration has sprung up this month between Angelique Fox, Sarah Baker and Wendy Jones.  These two #MatExp mums who have never met in person have both volunteered to help Wendy to collect data and raise awareness with regards to drugs in breastmilk, particularly where dentists and podiatrists are concerned.  It was discussed on the #MatExp Facebook group that these two healthcare professions are often cited as not having up to date information about breastfeeding and medications so this collaborative project is aiming to tackle that.

Luisa Lyons, the Infant Feeding Coordinator who wrote our original post on this subject, gave us this fantastic update: “Been a busy couple of months. Infant feeding e-learning training for doctors up and running at my unit and both paeds and obstetricians encouraged to complete it. Great support from our obstetric consultant clinics director too. General paed nurses now doing mandatory infant feeding training every year. Been invited to teach general paed doctors face to face. Three GP’s have done the UNICEF 2 days bf management course with us and now writing bf training for GPs in Norfolk. Included info on bf and medications with scenarios to both student nurses and our midwives at keyworker training now, and incorporating into Mt for all maternity staff. Also off topic slightly am putting in a WHO code game to all the above which has generated lots of awareness with student midwives and maternity staff. Need to join DIBM as a friend which I had forgotten to do, so thanks for the heads up.”

Dads & Partners

Mark Williams, co-founder of Dads Matter UK, wrote this blog post for us for #OxyOct, detailing his work and campaigning: http://matexp.org.uk/matexp-and-me/dads-matter/

Men Love and Birth

Midwife Mark Harris launched his book this month, Men, Love and Birth, “the book about being present at birth that your lover wants you to read”.

A Manchester midwife reported positive outcomes around new rules enabling dads & partners to stay over on her unit:

Dads & Partners Mags

When asked how we can best support Dads & Partners, newly elected NCT president Seana Talbot tweeted:

Dads & Partners Seana

Community Outreach Midwife Wendy Warrington tweeted:

Dads & Partners Wendy

I asked Wendy about the work she does with regards to Dads & Partners and she explained “I talk about attachment and being with their baby, skin-to-skin touch. Antenatal and postnatal depression, and fathers’ role in supporting their partner in pregnancy, birth and beyond and how they can do this. I talk about baby cues and the impact of father’s involvement on child’s future emotional and cognitive development.  I have had excellent feedback from parents and when I see them after the birth they say they felt well prepared for feeling and emotions experienced post birth. They love the fact that I talked about it”

Collaboration between Midwives and Health Visitors

Health visitors on the #MatExp Facebook group told us:

My CPT & I have established 6 weekly meetings with the community midwife and the GP (whose special interest is pregnancy/neonates) to discuss cases”

“We already have that in my team we meet at least once a month with the midwife – it was weekly but we are very busy at the moment (both us and the midwife). She will just knock on our door though and share things – she really came on board with antenatal contacts telling parents to be and signposting those with small children with any worries to us.”

With excellent timing Sharon White, OBE, Professional Officer of the School & Public Health Nurses Association, then tweeted the updated pathway for health visiting and midwifery partnership.

partnership

And as a result of discussing all of this on Twitter, Sheena Byrom has invited me to lead a tweet chat with @WeMidwives and @WeHealthVisitor in November on the subject of midwife and health visitor collaboration.  Watch this space!

Birth Tank

And so much more has been happening in #OxyOct as well! #MatExp was well represented at the NHS Maternity Review’s Birth Tank 2 event in Birmingham – click here for Emma’s round up. I spoke at the launch of the Improving ME maternity review for Wirral, Merseyside, Warrington and West Lancashire – click here for my round up of the morning. Leigh Kendall and Florence Wilcock spread the word at the RCOG Conference on October 16th, and Leigh spoke at the Royal Society of Medicine event on October 20th.

RCOG

Leigh capture

Baby Loss Awareness Week took place this month and many important discussions were had around the subject of grief and loss, something which affects a number of #MatExp campaign members.  Leigh wrote movingly about Standing on the Periphery for #HugosLegacy.

BabyLoss

The RCM has this month launched its State of Maternity Services Report. Emma Jane Sasaru has written a series of three blogs about What Matters in Birth.  Susanne Remic has been raising awareness of IUGR. Michelle Quashie created fantastic word clouds for display in her local maternity unit.  We now have #MatExpHour every Friday created and launched by Louise Parry – click here for her round up of Week 2.  So much going on!

IUGR

I have no doubt there is much much more that I have missed from this round up. There is so much energy and passion in maternity services, and so much desire for change. Whatever it is you are trying to achieve, please join up with #MatExp via Twitter, Facebook or the website and get encouragement and input from like-minded people. Together we are stronger! Feel the Oxytocin flow!

 

Helen Calvert, 2015

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Safety, Experience, or Both?

A blog post from #MatExp founder Florence Wilcock.

Flo

There has been much discussion recently about safety within maternity services including a discussion on #MatExp Facebook group. A particular issue that bothers me is the idea that safety and experience might be two separate and mutually exclusive issues and it is this thought that drives me to write today.

Safety is paramount. The purpose of maternity services is to provide safe care through the journey of pregnancy and early newborn life. Every appointment in the NICE pathway is designed to screen for potential problems and ensure they are managed effectively. Every healthcare worker know this is the aim. The 20 week ‘anomaly’ scan might be considered the time to discover the sex of your baby if you wish and to get some photos but the medical purpose is to ensure the baby is growing well, with no abnormalities and to check where the placenta is localised to exclude placenta praevia (low lying placenta) which can cause life threatening bleeding.

But there is more to pregnancy and becoming a parent than safety isn’t there? I am currently reading Atul Gawande ‘Being Mortal’ where he eloquently demonstrates that keeping elderly people ‘safe’ is not enough, there is more to life and living than safety alone. He describes a number of times when giving elderly people purpose such as a plant or animal to look after or more freedom to live the way they wish despite disability it makes a significant difference to their wellbeing. Sometimes this path may deemed ‘less safe’ but for that individual may make all the difference. This comes back to choice. Safety & choice can be tricky ones to combine successfully.

This does not mean I am belittling safety. As a consultant obstetrician it falls to me to talk to couples when the worst has happened and their baby has died. I also care for women who have had unexpectedly life threatening complications. I know I am with them during probably some of the darkest hours they will ever experience. I cannot pretend to understand how they feel but I do know I have been part of those intimate moments of grief and with some families that has followed through into supporting them sometimes for years. As a hospital we have a robust process of incident reporting and the feedback from a Serious Incident investigation (SI) again will sometimes fall to me. In some cases there is nothing that we think could have been done differently in some cases I have to sit and tell an anguished couple that we have failed them and that maybe things could have been different. It is a devastating thing to do, there is absolutely nothing that can be said that will make the situation better. It feels as if you have personally have taken their existing despair and dragged them into an even more unthinkable place and the only thing you can say is ‘sorry’ which feel hopelessly inadequate and trite for such a situation.

So if I could guarantee safety I would in a flash but it is not that simple. Maternity care is delivered by people and unfortunately to err is human. We cannot design a system free of risk because however hard we try the variable of human error gets in the way. We can introduce systems that help minimise the impact of these errors but we can’t eliminate them. My favourite analogy for risk management is James Reason’s model of Swiss cheese. The event only happens when the holes in the ‘cheese’ line up the rest of the time the barriers put in place prevent the error. An example in maternity care might be the introduction of what we call ‘fresh eyes’. A midwife looking after a woman on electronic fetal heart monitoring might misinterpret this or not see the subtle changes over time if she has it in front of her constantly. ‘Fresh eyes’ means another midwife or obstetrician comes and looks at the trace on an hourly basis. This means if unusually the first midwife has made an error there is a system that means it is more likely to be corrected.

The concept of a ‘No Blame’ culture is another example designed to minimise human error. The idea that if one sees or makes an error one should report it without fear so that learning can be gained from it. It may be the learning will be the need for some individual training but equally it might be something totally different. If staff are fearful of consequences then under reporting might be the result and safety gaps may not be identified. Encouraging openness about mistakes and errors is vital but difficult. In maternity it isn’t as if we can just operate our way out of this problem .We know the huge rise in Caesareans sections in the last 30 years has not improved the outcomes for babies but has instead cause maternal health problems. So in maternity as other medical specialties we have to constantly refresh and re-invent what we are doing to try and improve safety. As obstetricians we tread a difficult path trying constantly to call correctly just the right amount of intervention at just the right time.

BirthJourneys

So where does experience fit in I hear you ask? There is abundant published evidence of positive association of patient experience with clinical safety and effectiveness, in other words if your patients (or I prefer users) are having positive experiences then you are running a safer service. It’s hardly surprising if we communicate and explain things to women and their families that we will be more likely to communicate effectively to other members of the multidisciplinary team. If we are open and honest then woman can challenge assumptions and make sure we haven’t missed something critical, a woman knows her own history inside out whereas we might omit a key point. To me one of the most shocking things that was said at our ‘Whose shoes’ #MatExp workshop last year was that women can feel intimidated and unable to ask questions. Trust and understanding between health professionals and those we care for are vital. We cannot possibly hope to improve safety in isolation, experience has to improve too.

There are two specific elements of #MatExp of which I think epitomise the safety -experience overlap. The first is an on-going ever growing constructive conversation between women, families, obstetricians, midwives, health visitors, paediatricians, families and anyone involved in maternity services. Only by tackling the difficult conversations without hierarchy in an equal and respectful way can we improve maternity care. Listening and talking to one another is critical not only as we work with women but in dissolving those barriers and difficulties that sometime exist between different professionals. Flattening of hierarchy, team work and the ability of anyone to challenge is a well-recognised component of a safety culture. We are doing this both locally using the workshops and board game and more broadly via social media and the website.

The second element of #MatExp is that personal sense of responsibility to take action. Own what you are doing and why you are doing it. ‘Wrong is wrong even if everyone is doing it’ that doesn’t mean leave it to someone else. It means that health professionals and women can take action and influence maternity experience up and down the country and through that impact on and improve the safety of maternity care. So in final answer to my question I do not think it is a choice safety or experience I believe the two are fundamentally intertwined. So what will you do to improve #MatExp?

What will

Florence Wilcock, 2015

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Putting the Heart into Matexp – Heart Values

Cloud 2

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

Choice

Kindness

Language

Respect

Dignity

Compassion

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

FullSizeRender (17)

Choice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kindness

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

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

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

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

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

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

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

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

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

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

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

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

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Language

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

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

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

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

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

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

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

 

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

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

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

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

Failure   and   “incompetent”

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

Respect

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

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

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

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

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

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

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

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

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

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

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

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

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

Dignity

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

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

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

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

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

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

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

In fact this summed Dignity up perfectly.

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Compassion

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

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

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

Do we see compassion in maternity?

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

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

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

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

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

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

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

Can we as families show compassion to staff?

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

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

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

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

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


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

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

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

 

Emma Sasaru

 

 

 

 

 

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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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#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

 

 

 

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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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The Importance of Balanced Messages When Talking About Birth

This post was prompted by a Twitter discussion about helpful and unhelpful vocabulary in healthcare communication.

The discussion stemmed from a Guardian article bearing the headline “Should pregnant women be encouraged to shun labour wards?”.

The words used in the headline falls into the ‘unhelpful’ category. The article actually includes the experiences of three people: one an advocate for home birth; a mum who chose to give birth in a hospital; and a dad whose wife chose a home birth for their fourth child – there were complications and he advocates choice. In short, the article really says “different women choose different places to give birth for different reasons”.

Articles such as this are all as a result of new NICE guidelines that suggest 45% of births are more suitable for midwife-led care or home birth. Difficulties with healthcare communication and such headlines can arise when words such as ‘are’ and ‘is’ are used. Yes, the guidelines are based on evidence, but when you say ‘are’ and ‘is’, people tend to interpret that as a blanket fact. ‘Could be’ is better than ‘are’ because each woman is an individual, with her own individual needs.

Some commentators are concerned the guidelines could remove choice, rather than giving more, worrying that ‘encouraging’ women to give birth at home is a euphemism for ‘forcing’ them to do so.

This example demonstrates that whenever a new guideline on any health matter is released, it will be met with a healthy dose of cognitive dissonance – people interpreting the news based on their own experiences, expectations, hopes and fears.

Cognitive dissonance happens even if you have evidence for your new guidance coming out of your ears. As an NHS communications manager, countless hours of my life have been spent translating NHS guidance on a range of matters – cancer screening, vaccinations and healthy lifestyles to name just a few – into something that the public can understand, relate to – and hopefully act on.

When writing a press release on a health matter, or a patient information leaflet great caution has to be taken to not over-generalise, raise unrealistic expectations, or be misinterpreted by the media (although with the best will in the world the latter is not always possible).

I understand that years of scare stories about all forms of birth have led to a crippling fear of birth. Balance is what is needed. When talking about home birth or midwife-led care being a safe or a safer (than hospital) option for a certain group of women, we should be careful to emphasise those options are not safe or safer than a hospital birth for every woman. A lack of that emphasis could have the unintended consequence of making women who have to give birth in hospital, or need to have interventions for whatever reason feel less of a woman, or to have failed, or to feel guilty.

Surely none of us want that.

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I know a couple of women who have given birth by Caesarean section, both emergency and elective. They said they have had comments from women who have delivered their babies naturally such as women who have had C-sections ‘haven’t really given birth’. What a horrible thing to say! I had an emergency C-section myself, and while I have little doubt pushing a baby out of your vagina hurts (a lot, probably), having your stomach muscles cut open is far from an easy option.

Yes, we need to stop fear of birth. Yes, we need to promote birth as a normal life event. But we should be careful to not encourage or perpetuate bitchiness and competition between women as another unintended consequence of these messages.

This is the kind of statement about birth that I would love to read:

“Individual women have individual needs when giving birth. Many women are able to give birth at home, but because of issues with the current system not all who want to choose a home birth get it. Hospital can be a stressful place to give birth, which can lead to some women having interventions that are unnecessary. That’s why we’d like to give more women, in joint discussion with them, the option to give birth at home if they are considered to be low-risk. However, the needs of mums and babies are paramount, and as birth is not always straightforward there may be mums who need to give birth in hospital, with or without intervention.

“Our ultimate aim is for every woman’s experience of birth to be positive. We will do that by empowering women to be able to voice their opinions, have as many options as possible, and strive to remove fear and guilt by saying there is no right way or place to give birth.”

I know my fantasy statement above is what the guidelines are trying to achieve – this statement from NICE sort of says the same thing.

The trouble is, some people will be literal and translate the key point into ‘they’re saying home birth is safer, that means hospital birth must be dangerous’. This isn’t helped by headlines such as this one from The Mirror: “Mums-to-be warned: ‘Have your baby at home, it’s safer’”.

Many people are too busy to delve in to the facts behind the story (or just can’t be bothered to look). That results in a perception that the guidelines are saying something like:

“Home is the safest place to have your baby! Good luck to you if you have to give birth in hospital. They’re scary places, staffed by evil obstetricians whose greatest pleasure comes from inflicting pain by doing things to you that you don’t need.”

Ergo, more fear is created by stigmatising hospital birth. We don’t want such a vicious circle. So, balance. When talking about birth, think about helpful and unhelpful words, how they might be interpreted and their consequences.

We also need a greater emphasis on patient feedback, so services know what to focus on. Happily, more hospitals throughout the NHS are doing this.

As well as listening to negative experiences so services can improved, we need also need to promote the positive experiences – fear not, there are plenty of them, wherever the mum gives birth, and however the baby comes out.

 

Note: I called the statement a ‘fantasy’ for sake of the avoidance of doubt that it’s not an official statement.

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My HELLP Syndrome Experience (Part 1)

One night when I was 23 weeks’ pregnant, I woke up with a pain in my chest.

“Heartburn,” I thought.

It was uncomfortable, I felt constantly full. Normal heartburn medicine did nothing.

I was putting on a lot of weight. Normal for pregnancy, I thought.

I was becoming breathless. Related to the weight gain, I thought.

I was very emotional. Normal pregnancy hormones.

I Googled my symptoms. Preeclampsia was a possibility. “Don’t be ridiculous,” I thought, “I am only 23 weeks’ pregnant.”

This went on for six days. Getting progressively worse.

The heartburn became painful. I was unable to sleep. I got up in the night to drink milk. I don’t like drinking milk. I even resorted to taking paracetamol, having resisted any drugs in my pregnancy until then.

Day seven brought a routine midwife appointment. High blood pressure. Ridiculously high. Surely the machine must be broken, I have low blood pressure. Three pluses of protein in my urine. I had to go straight to hospital for further checks.

I knew the protein was a symptom of preeclampsia, but I was not worried because I was only 24 weeks pregnant. I thought it was a problem only in later pregnancy. I thought I would be bored in hospital. Lots of waiting around. I had forgotten my Kindle.

How wrong I was.

Arriving at Bedford Hospital, more urine given, blood taken.

A consultant comes to see me. I have preeclampsia and something called HELLP syndrome. Everything else is irrelevant because they say I will have to deliver my baby that night. I am seriously ill, and the only cure is to deliver the baby.

It is early, far too early.

I am distraught. So is Martin. We cannot believe it.

An injection is put in to my thigh. It hurts. But it is a steroid, to help my baby’s lungs develop. It is the first of two such injections.

I am taken to a room that doubles as an operating theatre. I have to remove all my clothes and put on a gown. I am advised to remove my rings, because sooner or later my whole body will swell and they would have to be cut off.

A catheter is inserted. I do not understand at that time the concern for my kidneys. I am sure someone must have told me, but I do not remember. It takes me several weeks to figure out the connection.

I must have a cannula so they can give me magnesium sulphate to protect my and my unborn baby’s brain from potential seizures. A doctor tries, then the consultant. Anaesthetists are called. They try, one arm each. So many attempts, but the cannulas do not flush through. I am able to count 20 puncture marks when the bruises appear later that week. Martin leaves the room because he cannot bear to see me in such pain.

Mercifully, they give up and insert a central line. I lie perfectly still, a plastic sheet over my head as they insert a line into my jugular. It is stitched into place. It is difficult to move my head.

They start the magnesium sulphate through the line in my neck. All of a sudden I am on fire. My skin is burning. I throw up.

A radiographer comes to take an x-ray of my chest, to make sure the central line is in the right place, not poking into a lung. A lead apron is placed over my belly to protect the baby. I am asked if I am happy having an x-ray because I am pregnant. “Of course I am not bloody happy about it,” I reply. But what choice do I have? A punctured lung not do me or my baby any good.

Me in Bedford Hospital. You can see the central line in my neck, and how big I was becoming (besides me being 24 weeks' pregnant).

I am told I my baby will have to be born that night. There will be no time to induce me, so a Caesarean section it is. An epidural is out of the question because my platelet levels are too low. A general anaesthetic it will have to be. My baby is too small to be cared for in that hospital so will be immediately transferred elsewhere, with me following when stable enough.

Platelets are what enable the blood to clot. An epidural could cause bleeding in my spine and leave me paralysed. I do not want to be paralysed, but nor do I want my baby to be sent away from me, with the chance that I will never meet him.

Two neonatologists come to see me. This hospital is equipped to care for babies from 34 weeks. My baby is far too early. I can see the fear and uncertainty in their eyes. They say there is a 50/50 chance whether our baby will be born alive. If alive, he is likely to suffer a short, painful life because of brain bleeds and bowel problems. They ask us if we would want them to attempt resuscitation. We do not hesitate to say we want our much-wanted baby to be given every chance. We are terrified.

This is Monday night. Martin sleeps on a reclining chair next to me. Except neither of us sleep. We both sob, mourning the baby we have not yet met.

I am given hourly checks on my reflexes. I am not allowed to eat, with the possibility of a general anaesthetic soon. I am allowed only enough water to swallow more medication. I am attached to a blood pressure machine and a sensor on my finger to monitor my heart rate.

Morning arrives. My baby is still in my belly. Relief! I am feeling much better. I am allowed to eat, but my fluid intake is still strictly monitored. My mum arrives, having set off early that morning and driven all the way from Devon.

The doctors are puzzled. My condition has stabilised, and some things have even improved. I am special. The kind of special that no one wants to be. I am still not going anywhere though. I am forbidden from getting out of bed. They are waiting for me to be stable enough to be transported to a bigger, specialist hospital. Wherever has a spare bed.

A student midwife is posted next to my bed all day. I am glad, I have someone to chat to. I do not realise at that time that she is there not for my entertainment, but in case I suddenly have a seizure, or otherwise suddenly deteriorate.

The midwives consult the procedure for the care of women with preeclampsia, it is something they see so rarely. They are kind and different ones pop in to see me to see how I am getting on.

A friend visits. While she was there, she tells me months later, the consultant arrives. He tells me I am seriously ill and that they are very worried about me. “Oh ok!” I apparently cheerfully reply. My friend is terrified. I remember her visiting, but I do not remember this conversation.

I am completely, blissfully, away with the fairies.

That night Martin returns home to sleep. There are more hourly checks. Some people turn on the wrong light switch, turning on the dazzling theatre lights. The infusion machine seems to be programmed to occlude and alarm every time I drop off to sleep. I am exhausted.

Wednesday morning arrives. I am allowed to get out of bed for the first time since Monday evening. I waddle to the shower to sort of get clean – I am told to try to not get my central line wet.

A bed has been found for me at St George’s Hospital, in south London. Liverpool was next on the list. I am happy with south London. In fact, I don’t really care. An ambulance has been called to take me there. Two midwives will accompany me. What an overreaction, I think, I feel much better than I did on Monday. Martin is unable to come in the ambulance, not enough room, so he follows by train.

We speed down the M1, blue lights and sirens blaring. Zoom through central London. The ambulance is uncomfortable, lying on a stretcher.

I arrive at St George’s. Taken to another private room. The midwives and paramedics wish me well and depart. My history is taken by more doctors. They say I will be moving to another room, one with more monitoring capacity, but first they need to move the woman currently in there out: I need it more. The severity of my illness still doesn’t dawn on me.

I am taken in a wheelchair for Doppler scan. It is a busy waiting room. People stare at me in my bottom-baring gown, central line, catheter, and generally looking a mess.

Martin and I are excited at seeing our baby on the screen. We are told our baby is growth-restricted, but I am mesmerised. The sonographer apologises, she would like to explain more but it is a rush, it is the end of the day, and she needs to get the results to the consultants. We are given an appointment for another scan in a week’s time. Hope.

I wait in the corridor for a porter to take me back to the ward. My heartburn is getting worse. I feel so sick. The pain is awful. I just want someone to take the pain away. Back on the ward, I do not know what to do myself. The pain! I stand by the bed. I start to shake uncontrollably. I am given medication, the pain goes away. I feel so much better.

That night I sleep so well. Martin is on a mattress on the floor next to me. I have my hourly checks. The baby’s heartbeat is strong. Everything feels ok. I will wait in this bed for a few weeks, let my baby get bigger and stronger before he has to be born. I will be bored out of my mind, but that will be ok.

I do not have time to be bored.

Thursday morning, a contingent of consultants arrive. They ask me how I feel. I say I feel really good: I have finally had some decent sleep, and the pain has gone. They say I am not ok – my baby will have to be born that morning. For real, this time.

I sob and sob. It is too early, far too early. We were going to have more time. I am given an examination to see if I can deliver naturally, but my cervix is locked shut. A Caesarean it is. Martin holds one hand, a kind doctor another. Both try to reassure me. I ask whether my baby will be born alive. They cannot say. They tell me how ill I am, apparently. I do not remember.

Anaesthetists arrive to explain what will happen. I listen but I do not hear, I am too distressed, and anyway I do not care. A consultant explains the risks of the section: bowel and bladder rupture, the chance of no more babies. I do not care, do whatever you like to me, make sure my baby is ok.

I am wheeled down to theatre. I feel like the worst mother ever: knowing my baby is likely to die so my life can be saved. A strange calm comes over me. I accept that I am unlikely to meet my baby. We will get a dog, and go on a holiday when I am better. Martin and I kiss and cuddle. He is not allowed in theatre with me. I tell him our baby is going to be called Hugo. I liked that name, but we had not been able to agree on a name for our unborn son.

One anaesthetist gives me a fluid to drink to stop my stomach acid rising. I am told to down it in one, like a shot. They are both so kind. But this isn’t going to be a good time. They need to put more needles and lines in me. I am given a sedative so they can do that. That is the last thing I remember.

Hugo is born at 11.20am, weighing just 420 grams. He is ventilated and whisked off to the neonatal unit. Martin is there when I wake up. He tells me Hugo is alive. I give the biggest smile. I do not remember this conversation, nor do I remember him holding my hand while I am wheeled all the way to intensive care, the other end of the hospital.

Hugo on the day he was born

I remember the nurse saying my name, trying to get me to wake up. I have more wires. One in my wrist marked ‘arterial’ to measure my blood pressure. A drain coming out of my tummy. Oxygen prongs up my nose. More magnesium sulphate being pumped in to me.

I just want to know about my baby. I want to see him, to be with him. I am told that day is impossible. I need to rest. There is still danger even after the baby is born. I lost two pints of blood during the section. I am swollen everywhere. I cannot grip anything with my hands. My mum feeds me fruit yogurt, I cannot use a spoon.

A consultant visits to see how I am getting on. Tells me “Sorry we had to do that to you, your organs were about to fail.” “Oh, that’s ok!” I brightly reply. Oh, blissful morphine had taken me even further away with the fairies .

A midwife arrives to express some of my colostrum for Hugo. Precious protection for my little boy. One thing I can do for him.

I feel totally helpless. There are so many beeps and alarms on this ward. I cannot move.

In intensive care

Martin says how amazing Hugo is, a beaming smile. I have photos of him. Precious photos. I want to see him myself. I cannot wait to be with my baby.

Friday morning arrives. I am told I can leave intensive care, and return to maternity high dependency. I will be taken to see Hugo on the way. I cannot wait.

Time ticks away on that Friday. For the previous day and night I had my own dedicated nurse, and now I share her with another patient. They take up most of her time.

I feel alone, helpless, and want to see my baby more than anything else in this world. Why do they not understand?

I ask, so many times. Nurses make calls. A problem with the bed I need. I do not care, I want to see my baby. My baby needs his mummy, I need my baby. No one takes me. No one does anything about it.

By the end of the afternoon I ask the nurse caring for the patient next to me (bizarrely, my nurse’s other patient is at the other end of the ward) if she knows when I will be taken to meet Hugo. I do not remember her exact words, but they were to the effect of “Pipe down, there are other patients much sicker than you on this ward.”

I am so upset. I am in a hospital a long way from home. I do not even know what this hospital looks like. My body has not been my own this week. I need care, compassion, understanding.

Eventually, at around 8.30pm they decide they will take me in a wheelchair to meet Hugo. At last! It is a delicate operation, I am swollen like a Michelin man, I have wires going into me and going out of me. I am not able to move alone, and have not mobilised since the C section. The curtains around my bed are drawn to preserve my modesty.

Some of my beautiful bruises.

Suddenly Martin’s head appears in a gap between the curtains. I am not to worry, he says, but I need to come quickly. I can read the look on his face: there is much to worry about. I make him tell me: Hugo’s blood pressure is declining, and nothing they are doing is working. They are worried they are losing him.

I shriek. Shout at the nurses with their faffing. They are trying to be gentle with me, I know, but I am unspeakably furious at them for the time they have taken to take me to see Hugo. I am terrified he will die before I get there.

The nurse wheels me along the corridor. People get out of the effing way! Don’t they know my baby is dying? The wheelchairs are as bad as supermarket trolleys, she wheels me into obstacles. The pain shoots up in to my stomach wound. Martin takes over.

Cheeky Hugo, kicking away and grabbing his wires.

We get to the neonatal unit. Hugo’s nurse and consultant introduce themselves. They had been frantic, but the little monster’s blood pressure corrected itself the moment I arrived.

Little Hugo Boss knew exactly how to get what he wanted. His mummy.

I shrieked again when I saw him. So small, so red.

The consultant told me to open the porthole, touch him, get my mummy germs on him. I didn’t want to, I thought I would break him, but I did, I reached in with my hand and my son gripped my finger. It was the most amazing moment ever.

So began the most beautiful and the most terrible 33 and a bit days of my life. Hugo lived for 35 days, but I missed a day and a half of it.

A cuddle with Mummy

That was Friday February 21 2014. Ten months ago to the day. There are many parts of the story I do not remember, but the terror of that wheelchair journey and the ecstasy of finally meeting my son are two moments that are etched in my memory forever.

I made a formal complaint: the written reply felt flippant to me, that they did not fully understand the gravity of the situation, the potential implication of their inaction. I met with representatives of the ward a couple of months later and read them the riot act. They will never forget me, nor Hugo. No other mother should experience that. Having HELLP syndrome and everything else that went with it was bad enough. That was unavoidable. My life was saved, Hugo given the best chance. I am grateful for every moment I had with Hugo.

Hugo, Martin and me

But what happened on that ward that day was entirely avoidable.

I have felt a compulsion to write this today. I don’t know why: perhaps I just need to get it out of my head, in a raw, visceral way.

I know I am lucky to be here. The ‘heartburn’ and pain under my ribs was my liver in serious trouble. My kidneys weren’t doing well either. My blood pressure was far too high and my platelet level far too low.

Here I sit, 10 months later. Physically sound, thanks to the actions of the wonderful maternity, obstetric, anaesthetic and pathology teams of two hospitals.

Emotionally, I am still trying to process it. Pregnancy is supposed to be a natural event. I know bad things can happen during pregnancy: babies lost, babies tragically born sleeping. But the placenta turning your body against you? The placenta sending toxins around your body, shutting down your organs. I know now it is not my fault, but it does not prevent me feeling guilty.

HELLP. What a crappy acronym.

There is nothing helpful about it.

It is a difficult thing to get your head around.

Proud Mummy alert: what a beautiful boy!

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Birth trauma and PTSD – Raising awareness

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When people think about post traumatic stress they often think of a soldier, returning from battle traumatised and battered by the ravages of war and the terrible things seen and experienced.

However PTSD doesn’t only affect those affected in the aftermath of war or a terrible natural disaster or violent act. PTSD can also affect someone in circumstances that should be safe, that should be happy, that should be the start of an amazing journey. For some women the birth of their baby can be traumatic and can be a trigger for PTSD that can severely affect their life. It can affect bonding with their baby, relationships with family and friends, doing everyday activities and physical health. So what is birth trauma and PTSD and how can we help and support women that are suffering?

Firstly what is birth trauma?

Birth trauma is in the eye of the beholder’ (Cheryl Beck) and this is true. What is traumatic to one woman may not be traumatic to another woman. Each woman’s experience of birth is unique to her and many things can add to a woman feeling her birth was traumatic. For some it maybe that her birth was a truly scary event, she may had been in an emergency situation where her life and that of her baby was at risk. Maybe her labour was very lengthy and very painful. It may be that a woman’s birth had high levels of medical intervention, such as induction, caesarean section, episiotomy, or other medical issues. It may be that a woman gives birth early and her pre-term baby requires care in NICU. Sadly some women have a birth that results in damage or injury to her baby and some lose their babies at birth.

For other women trauma can result from the way she is looked after by the staff responsible for her care both during the birth of her baby but also postnatally. She may feel a loss of control, dignity and privacy. There may have been a lack of information or a woman may feel she wasn’t listened to and her choices not respected or overlooked. She may feel she had medical procedures done without her consent or without proper explanation or that she was left with no choice. Or maybe unkind, cruel words and actions made her feel vulnerable and exposed.

Some women find birth triggers or adds to previous trauma such as rape or domestic abuse.

Often women who feel traumatised from their birth will feel isolated, other women may not understand why she feels traumatised, after all isn’t childbirth a ‘natural thing’? So a woman can feel guilty and somehow ‘weaker’ than other women for being unable to ‘cope’ with birth . She may feel she should be over the ‘birth’ and often well meaning friends and family will say things such as “at least you are ok and you have a healthy baby”. This only confounds the woman’s feelings and makes her feel more isolated and can damage relationships with partners, family members and friends as a woman feels no one understands and so she withdraws deeper into the trauma. Depending on the nature of the trauma a woman may feel unable to have further medical tests such as smear tests. Sex may also be affected as a woman may fear further pregnancies, or even just the act of physical intimacy itself. Many women who suffer birth trauma may struggle to bond with their baby, others become overly anxious of their babies health and wellbeing and constantly worry about every aspect of caring for their newborn.

For a woman that has lost a baby during birth or whose baby has been injured during birth she may experience overwhelming guilt, she may feel like it is her fault that she somehow failed her baby or that she should somehow have prevented it. She may play over and over again the birth in her head seeking answers or ways she could have changed the outcome.

Feeling like they have no voice, are misunderstood and weak many women will seek to hide their true suffering and ‘carry on’, the weight of trauma bearing down on them crushing hope, light and happiness as they try desperately to cling to normality. Everyday tasks become hard and just coping day to day can feel overwhelming. Their physical health too may suffer, as the effects of trauma ravage them mentally. Lack of sleep, trouble eating and the constant struggle all takes its toll. Flashbacks may take them back to the event reliving moments, even smells and conversations causing great distress and anxiety.

So what is PTSD and how does it differ from postnatal depression?

Often women can be wrongly diagnosed with PND when in reality they have PTSD.  While PTSD and PND can overlap as they do have some similar symptoms, they are very different. Its important that a woman receives a correct diagnose so she can have the support, help and therapies she needs. PTSD is the clinical term for a set of normal reactions to a traumatic, scary or bad experience or event. It can occur after a person experiences or witnesses something that was or they perceive to have been life-threatening.

Signs of PTSD include:

  • Feelings of intense fear, helplessness and/or terror.
  • The re-experiencing of the event by recurrent intrusive memories, flashbacks and/or nightmares. The individual will usually feel distressed, anxious or panicky when exposed to anything which remind them of the event.
  • Avoidance of anything that reminds them of the trauma. This can include talking about it, the place where the trauma happened or people that may have been involved in the trauma. (such as hospitals, doctors, healthcare professionals) Even T.V programs or books maybe avoided.
  • Bad memories and flash backs often result in difficulties with sleeping and concentrating, thus affecting daily activities. Sufferers may also feel angry, irritable and be hyper-vigilant or jumpy, easily startled.
  • Suffers may suffer panic attacks, depression and anxiety. They may feel detached, alone and have a sense of something bad may happen to them or their loved ones.

It is important to remember that PTSD is beyond the sufferer’s control. It is the mind’s way of trying to make sense of an extremely scary traumatic experience and are not a sign of an individuals ‘weakness’ or inability to cope. The person cannot just ‘get over it’ or ‘pull themselves together’ or ‘move on’. Rather they need help and support to process not only what has happened to them but also the feelings surrounding it.

So what can help a woman who has suffered birth trauma or PTSD?

For partners, family and friends its important to acknowledge what has happened to the women and her feelings surrounding it. Encourage her to talk about her feelings if she is able to. Help her to see you want to try to understand how she is feeling and that you recognise how traumatised she may feel.  Reassure her that you are there for her and that you will help in anyway you can. You maybe the only person that she trusts. Encourage, commend show compassion and empathy. Emotional support is invaluable, even if it’s just a listening ear or a hug. Realise that there may be things or activities that she may not yet feel ready to do, be patient and show understanding.

Encourage her to get help, whether it be her GP, health visitor, midwife or a charity such as the Birth Trauma association or Mind. This will not be easy as she may have a fear and distrust of telling anyone how she really feels especially a healthcare professional. Reassure her of your support, maybe offering to attend any appointments with her if she wishes. Asking for help will be hard, and so will the time undergoing any therapies being there for her providing emotional support is so important.

Also, helping with daily activities can mean so much, helping her get much needed rest offering to prepare a meal, or to do some shopping can also be invaluable.

Helping someone with PTSD can be difficult and frustrating.Partners and family can feel lost and confused too. Reading up on PTSD can help you understand it and how it can affect someone that is suffering.

Of course some partners too can feel traumatised and suffer from PTSD after seeing the birth of their baby. It is important they too seek help and support.

What about healthcare professionals?

Its important that any healthcare professional’s when supporting a woman after birth build a relationship built on trust. LISTEN, this is the single most important thing to a woman who is suffering. Listening enables you to truly know what she has been through, how she is feeling and whats important to her and her family.  Listening will enable you to know if she is likely to be suffering PTSD or any other perinatal mental health disorder. Listen also to her partner and family, they know her best, if they feel something isn’t right or reach out for your support then be there.  Ask for training in order to help you understand the different types of perinatal mental health issues and know the pathways and any local support available to signpost a women to.  Be careful of language used and do not minimise her feelings or experience.  If you know a woman has had a traumatic birth from postnatal notes etc, ASK, don’t ignore it.

What can a woman who has had birth trauma/PTSD do for herself?

  • Speak to someone, partner, family, friends, midwife, health visitor, GP. Don’t suffer in silence.
  • Remember you are not alone, there are others too that have been affected by birth trauma.
  • Remember you are not to blame.
  • Look after yourself, make sure you rest and eat a good balanced diet. Do things, activities that help you to relax.
  • Know your limitations and what you can do both physically and emotionally.
  • Speak to your hospital about your experience. Some women ask to see their medical notes and discuss exactly what happened to them and why.
  • Seek help and treatment. There are various treatments for PTSD such as counsellingEye Movement Desensitization and Reprocessing (EMDR), cognitive behavioural therapy (CBT) and medication.
  • Find local support groups or support groups on social media (such as birth trauma facebook support page)

Birth trauma is real and so is PTSD, its important that women get the help and support they need to overcome it. The birth of her baby can affect a woman for the rest of her life, it may not be possible to completely prevent birth trauma but what we can do is support women when things do go wrong and make sure that we show them love, compassion, kindness and help even at the darkest times so they believe that it will be possible to bathe in light again.hafiz-quote1

my story of birth trauma

Emma Jane Sasaru

@ESasaruNHS

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