Maternity Experience

Birth Trauma

#LithotomyChallenge on #NHSDoAthon day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“For NHS change day I wanted something that made a statement that said “#MatExp has arrived, take notice, we are improving maternity experience, get involved!” I couldn’t quite think of the right action until I saw a twitter exchange with Damian Roland back in December and watched a video where he described his spinal board challenge from NHS Change day, 2014. I had a light bulb moment thinking what would be the maternity equivalent? Lithotomy!”

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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#MatExp Whose Shoes? update

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

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

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

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

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

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

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

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

Keep up the good work!

Gill Phillips @Whose Shoes

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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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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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“I was told I was going to have a big baby….” And then what happened?

A while ago on a Facebook birth forum I saw the phrase “you won’t grow a baby too big for you to birth”. It was a familiar phrase as it was something I would hear regularly on the homebirth e-group I was a member of back in 2010 when I was pregnant with my first. Back then I accepted it as the truth, but having been involved in #MatExp for nearly a year I have learned that few things to do with birth are that simple. So I asked the question on the #MatExp Facebook group:

Big Baby Capture

What followed was a fascinating discussion. Information was shared from lots of different quarters, and evidence was linked to. Experienced birth practitioners shared their views and a few themes started to appear. All along I knew I was intending to write up the discussion as a blog post so I was trying to keep up with the information and understand what was being said. As I opened up links to studies, trials, journal articles and so on my heart sank as I am not the best at analysing that kind of thing and it seemed at first glance that the evidence shared was somewhat contradictory. So I was concerned that I would end up inadvertently talking rubbish in this post.

And then I realised that this is exactly the problem. I am a woman of childbearing age who has had an education to degree level, English is my first language and I discuss birth and maternity pretty much every day. When we talk about informed choice we mean sharing all of the evidence plus the benefit of experience with pregnant women and their families, so that they can go through it and make their own decisions. Yet if I were writing this today as a woman who had been told she was likely to have a “big” baby I would be confused. And a little scared.

So it’s a good job I didn’t know any of this when I confidently went on to give birth to my 8lbs 13oz son on all fours on our bathroom floor.

From http://evidencebasedbirth.com/evidence-for-induction-or-c-section-for-big-baby/
From http://evidencebasedbirth.com/evidence-for-induction-or-c-section-for-big-baby/

Let’s pretend for a moment that I am in my third trimester and have been told by my midwife that she suspects baby is going to be a big ‘un. Probably a bouncing 9lbs tot. Before I go down the route of “doing” anything about that, or amending my birth plans, I have asked the #MatExp group for some information. What have I discovered?

Well, firstly we need to know a little bit more about this fictitious me. Do I have gestational diabetes? Am I classed as overweight? No? Okay then, we can stick with our issue being only the predicted size of my baby and keep questions of GD and BMI for another day if we may. Similarly, we will assume that I am physically able. So why are people sucking their teeth and looking concerned that baby might be of a generous size?

This is where we come to shoulder dystocia. “Shoulder dystocia is when the baby’s head has been born but one of the shoulders becomes stuck behind the mother’s pubic bone, delaying the birth of the baby’s body. If this happens, extra help is usually needed to release the baby’s shoulder. In the majority of cases, the baby will be born promptly and safely.” (From https://www.rcog.org.uk/en/patients/patient-leaflets/shoulder-dystocia/

In the majority of cases, the baby will be born promptly and safely?  So what’s all the fuss about then?  Well let’s look at this passage from the abstract of this article:

“Shoulder dystocia remains an unpredictable obstetric emergency, striking fear in the hearts of obstetricians both novice and experienced. While outcomes that lead to permanent injury are rare, almost all obstetricians with enough years of practice have participated in a birth with a severe shoulder dystocia and are at least aware of cases that have resulted in significant neurologic injury or even neonatal death. This is despite many years of research trying to understand the risk factors associated with it, all in an attempt primarily to characterize when the risk is high enough to avoid vaginal delivery altogether and prevent a shoulder dystocia, whose attendant morbidities are estimated to be at a rate as high as 16–48%. The study of shoulder dystocia remains challenging due to its generally retrospective nature, as well as dependence on proper identification and documentation. As a result, the prediction of shoulder dystocia remains elusive, and the cost of trying to prevent one by performing a cesarean delivery remains high. While ultimately it is the injury that is the key concern, rather than the shoulder dystocia itself, it is in the presence of an identified shoulder dystocia that occurrence of injury is most common.

The majority of shoulder dystocia cases occur without major risk factors. Moreover, even the best antenatal predictors have a low positive predictive value. Shoulder dystocia therefore cannot be reliably predicted, and the only preventative measure is cesarean delivery.”

Ah, okay.  So whilst MOST cases are not a problem, when there is a problem it can be very serious.  And most experienced obstetricians will have seen this happen, inevitably influencing their perception of the risks involved.  The teeth sucking is a bit more understandable now.

Apparently if I have a small pelvis it is more likely that baby will get his shoulders stuck. How do you know if you have a small pelvis? Small compared to what or whom? I have no idea but it appears to be a consideration.  One birth professional observed that “to me that ‘big’ is subjective in a lot of cases. A 7lb baby could be big to one woman whereas a 10lb baby could be average to another. There needs to be far more than just the picture provided by a (often inaccurate) scan. Woman’s own birthweight for example, her stature etc.” It was mentioned that pelvimetry used to be widely used but has been abandoned in favour of scans, due to a Cochrane review that found these measurements did more harm than good.

There is a higher likelihood of shoulder dystocia in bigger babies, that much is undisputed. Yet the language used when discussing this risk makes a big difference to how a pregnant woman might view the risk.  Contrasted with the passage above is this from Evidence-Based Birth:

Death capture

I suspect as with so many birth choices, women are likely to get the reassuring language from midwives who have confidently dealt with many instances of stuck shoulders, and more wary language from obstetricians who have seen first hand what can go tragically wrong.  

So in summary shoulder dystocia is more likely in bigger babies but on the whole it can’t be predicted and can usually be dealt with. It turns out that there are arbitrary cut offs for recommending Caesarean to prevent SD – 5kg in a non-diabetic woman. That means nothing to me but a quick Google tells me that is an 11lbs baby. My hypothetical nine pounder doesn’t warrant an automatic recommendation for a c-section then. So far so good.

But what position is my baby in? This is an important factor. I would argue that all pregnant women should be aware of foetal positioning and how to optimise it, but in this case it is particularly important as a malpositioned big baby could cause trouble. Let’s assume though that I have been on spinningbabies.com, haven’t been reclining on the sofa, have been doing headstands for nine months or whatever it is that is recommended. Baby is now head down and engaged and we’re ready for the off.

At this point it’s good to know that there is no evidence to suggest that it hurts more to give birth to a big baby. I cannot comment as my firstborn is the only child I have birthed vaginally so have nothing to compare it to. But the midwives on the group have been reassuring that being predicted a “big” baby does not mean increased pain in labour. Good stuff.

What I haven’t done (but what might have been recommended to me) – I have not had a growth scan. It appears that growth scans should be used to identify small babies (a discussion for another day no doubt) but not big ones. One group member commented “Ultrasound scans become increasingly unreliable the further along in pregnancy they are performed. Weight is an ESTIMATION can be up to 25% out either way. They base it on the abdominal circumference, head circumference & femur length – try doing it with yourself & see how accurate it is!”  

A birth professional went on to say “Growth scans are pretty hopeless in the third trimester – the only thing that is useful is a regular plotting of growth to try to identify a sudden growth spurt that could indicate a problem. A one off growth scan late on in pregnancy basically just leads to unhelpful fears on all sides.”

Which begs the question, how do we identify the potential 11lbs babies who “require” a c-section birth?

So I haven’t allowed anyone to worry me further with a most likely inaccurate scan reading. We think baby is going to be big but not so big that I am going to be encouraged to have an elective c-section, so I’m happy to go ahead with my vaginal birth.

This is where we come to the issue that dominated the discussion. The position that women labour in can make a HUGE difference to the outcome when they are birthing a large baby. Labouring on their back is most likely to be unhelpful. Labouring on all fours is most likely to enable them to birth without intervention. Certainly my experience – I could not bear to be in any position other than kneeling up for my entire labour, simply could not bear it. Lying down was absolutely out of the question.

One group member had a wealth of information to contribute and commented “There’s plenty of evidence to support programs like birth ball use, not just gentle bouncing but using as a structured exercise plus also designing maternity units/rooms to encourage movement and position changes and upright movement.”

A midwife explained “I worked with a lovely obstetrician a few years ago (I have worked with many wonderful obstetricians). She was leading the skills and drills component for obstetric emergencies of the yearly mandatory training. We were practicing what to do in the case of a shoulder dystocia with a mannequin. She looked at me and said, of course we all know that if we do this (turning the model over in to what would be an all fours position) we wouldn’t have to be doing this at all.”

And one of our obstetricians added “in terms of labour progression, size is not nearly so important as baby’s positioning and flexion.”

The impact of pain relief was also mentioned:Of course this is impacted by maternal position too, often compounded by an epidural that softens the pelvic floor muscles reducing the baby’s ability to rotate on the pelvic floor.”

Let’s recap. My midwife has said that it is her experienced opinion that I am going to have a big baby. I have declined a growth scan but we are both confident that baby won’t be topping 11lbs. So we’re going for a vaginal birth, and have done everything we can to ensure baby is in a good position. I am then being encouraged to be active in labour, labour on all fours and so on. There is no reason to believe that I will experience more pain due to baby’s size. There is an elevated risk of shoulder dystocia but my birth team are trained to deal with that. Hmm, okay, on reflection I would make the same choice I made back in 2011 when I hadn’t had this conversation. Home waterbirth with experienced midwives please! Especially, for me as an individual, “big” babies are normal – I was 9lbs 11oz at birth myself.

Does the above sound like the experience most women have when a big baby is predicted? Let’s ask some real life women shall we? Here I am indebted to the fabulous women on my other Facebook group who have shared their stories with me.

I was told I would have a big baby. The midwife measured me way off the chart at 36 or 38 weeks can’t remember which. Went for growth scan. Again measured me pretty big. Appointment with consultant, he measured me big. Straight aways did a growth scan. I was then booked in for an induction the following week. Was in from the 25th and had him on 29th (due on 5th July) he was only 8lb 2oz.” What was the reason for the induction? “Not sure. They said as it was my first I probably would go over so as he was measuring big now it could be more of an issue in 3 or 4 weeks.”

My 1st baby was 9lb 14oz and got stuck with shoulder dystocia and born with the ventouse.” And what positions were you labouring in with baby no. 1? Were you on all fours at all?  “No! I believe position/ventouse were what caused her to be stuck! I was dehydrated so they made me stay in the bed on my back to be monitored!”

“I was told my little boy was a big baby and I had to have a growth scan. I was then induced a week early due to his size. He weighed 8lb 15oz and I had a 4th degree tear and had to be rushed to theatre.” What did they say were the risks with him being big? Did they explain why they wanted to induce you?  “The explanation for me being induced was if I was left and went over I would have had a tough time, but looking back now I wish I had opted out of being induced as I blame that for the complications.”

I was measuring big for dates at my midwife appointments from about 24 weeks. I was eventually sent for a scan to rule out polyhydraminos at about 32 weeks. The scan results were ok and showed that my baby’s measurements were on the 95th centile. I was then changed to higher risk consultant led care. They told me it was due to the baby’s size and the increased need for intervention during delivery, e.g. forceps, etc. My baby was predicted to be 9lb 9oz maximum and she was actually 10lb 6oz. I was in slow labour for 6 days. I had to have an oxytocin drip to get me from 7cm but I couldn’t get passed 8cm as her big shoulders meant her head wouldn’t press down on my cervix! As a result of being on the drip, I wasn’t able to get in different positions in labour and was mainly confined to the bed. I then had an emergency c-section due to failure to progress.” How did all the talk of having a “big” baby affect how confident you felt in being able to give birth?  “To be honest, it did affect how confident I felt giving birth. I was then very nervous at the prospect of tearing or that I’d have difficulties during the birth and would need forceps, etc. I was very worried that something would go wrong. To be honest, I felt very relieved when the consultant said I needed a c-section.” 

I commented that I wondered whether that was the reason the mum above struggled to dilate. Rather than failure to progress perhaps her caregivers should be have been labelled with “failure to encourage”.

There was one rather different story, although the mum in question was surprised by how her consultant’s advice varied from what others were experiencing: Was told based on my daughter being 10lb that my little boy would be big. The midwife referred me to a consultant as my fundal height was bigger than even my little girl was! Tested me for GD which I didn’t have. Consultant said he was going to do absolutely nothing about it which varied massively from my peers at nearby hospitals who were being induced early. He said inducing a large baby is dangerous as they’re more likely to get stuck and if I got my little girl out this one would be fine! Bit worried but I trusted him.”

And what of those women who had not been told to expect a big baby?

“I had a 9lb 4oz baby but wasn’t expecting him to be ‘big’ I had a tiny bump and was told he was only going to be about 7lb.  I had him naturally with no complications at all. A few stitches externally but that was all.”

“My 2nd baby was 9lbs 6oz and no one knew he would be that big as my first was 7lb 11oz. Labour was very quick and vaginally delivered with 1 stitch.”

If 9lb2oz is classed as a big baby then mine was! He was 13 days over so probably wouldn’t have been so big if I’d gone on time. Nobody told me he was going to be big at any of the extra monitoring appts I had the week before he arrived all on his own, no help, drugs or hospital. I did tear slightly but midwife was happy for me not to go to hospital if I didn’t want to.”

I wasn’t told I was going to have a big baby, I was tested for diabetes at one point because my bump had grown quite quickly but I didn’t have it. My little boy weighed 9lb 15oz, I was in labour for 6 and a half hours and didn’t have any complications. I had a few stitches afterwards but nothing major.”

What can we say in conclusion?  When a baby is identified as potentially being “big” are all families given the information that we have discussed here?  Do all birth professionals agree with the general thrust of this post or have some important points been missed or misrepresented? And if I have got it all wrong what does that say for the idea of “informed choice”?  Because this is my best understanding of the issues following a detailed discussion with experienced birth professionals.  There are plenty of other birth stories from the mums on my group which make it clear that women are routinely being encouraged down the route of induction without fully understanding why, only that baby is going to be “big” and that is some kind of a problem.  And so many of these stories end in instrumental deliveries, emergency c-sections and, at worst, traumatic births.  Would it not be preferable for women to have the issues fully explained to them and to be encouraged to have an active birth where, in all likelihood, they will be capable of giving birth to their child?

I am just glad that my “big” baby is here, safe and well, and now in his second week at primary school.  Decisions always seem simple in hindsight.

Big Baby

Some of the links that were shared as part of the discussion not already linked to above:

Shoulder Dystocia – RCOG green top guidelines

Rebozo Technique for Foetal Malposition in Labour

The Effect of Birth Ball Exercises during Pregnancy on Mode of Delivery

Reducing Length of Labour and Caesarean Surgery Rate Using a Peanut Ball for Women Labouring with an Epidural

After Shoulder Dystocia: Managing the Subsequent Pregnancy and Delivery

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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

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Emma Jane Sasaru

@ESasaruNHS

 

 

 

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Time to Act on Anxiety

There have been some fantastic conversations taking place on the MatExp Facebook group, with a new ACTION thread every day 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 first topics we looked at was Anxiety, as it had been one of the first issues raised on the MatExp ABC.

Anxiety capture

“Anxiety” covers a number of areas when we look at maternity experience.  Mothers can have existing problems with anxiety, that have already been identified.  They could have had anxiety for some time but the experience of having a baby has intensified it (my experience).  It could be that they begin to suffer with anxiety postnatally – Emma Jane Sasaru has written here of her experience of perinatal anxiety.  Or perhaps their anxiety is focused on giving birth – many mothers are incredibly anxious about what the end of pregnancy has in store for them.  Finally, there will be mothers who have experienced birth trauma or baby loss and this can understandably provide a background for anxiety in subsequent pregnancies.

Anxiety UK says of anxiety that it is “something that can persist whether or not the cause is clear to the sufferer”.  The organisation lists the symptoms as

Anxiety UK Registered Charity Number (1113403) Established 1970
Anxiety UK Registered Charity Number (1113403) Established 1970

Anxiety UK

Certainly, on a personal note, “feeling detached from your environment and the people in it” goes some way to explaining why it took me such a long time to properly “fall in love” with my babies.  There was no “rush of love” for me when I gave birth and first held my children, despite my having positive birth experiences both times.  “Feeling like wanting to run away / escape from the situation” – many new mums feel like this at times when coping with a newborn baby but it is important to recognise when feeling like this “now and again” has accumulated into something more problematic.

action-clapboard

So how can we ACT when anxiety is a factor in maternity experience?  Let us first look at how women can help themselves:

  • Practice HYPNOBIRTHING – a number of people involved in the #MatExp campaign suggested this as a great way to alleviate anxiety in pregnancy and anxiety about birth itself.  Pregnancy Coach Suzy Ashworth explains here what hypnobirthing is all about, and how it’s beneficial for all women regardless of the way they plan to give birth.
  • BE HONEST and try to explain your anxieties to your healthcare professionals.  Find out as much as you can about anxiety and ways to manage it.
  • GET HELP.

Now these actions all assume that the woman in question is aware that she is struggling with anxiety.  But this is certainly not always the case.  This is where the birth professionals come in.  How can they act when anxiety is a factor?

  • Understand how anxiety can manifest itself.  If a women is finding it difficult to talk about something, if she is quiet and refusing to engage with a situation, if she practices avoidance by walking out on a conversation then think “anxiety”.
  • Give women the opportunity to talk openly about their fears, and really LISTEN.
  • Offering reassurance can be helpful but it can also be dismissive – being told “don’t worry, that won’t happen” can heighten a woman’s anxiety as she will feel as though her fears are not being taken seriously. Always remember that those fears are REAL to her, however bizarre they may seem to you

What services are available to women in your area who are struggling with anxiety?  Are the following available (and do you know how to access them?) or do they need to be put in place?

  • Hypnobirthing, mindfulness and meditation classes
  • Cognitive Behavioural Therapy (CBT)
  • Specialist mental health midwifery teams
  • Training for midwives and health visitors on recognising anxiety

Where services are available, there are simple ways in which women’s access to them could be improved:

  • Please check on the mental health of the women you care for throughout their pregnancy and postnatal period, not just at their booking in appointment.
  • If you offer anxiety support, please make it possible for women to enquire about these services by email, not just by phone. Phone conversations are very difficult for many anxious people, and services only being accessible by initial phone assessment put up a real barrier.

When we look specifically at prenatal anxiety, there are changes to our birth culture that could make a big difference:

  • Empower women to trust their bodies. Too many women fear that they will not be able to give birth safely – how can we help them to understand how their body works and reacts in labour, and how it can be supported and encouraged to do its job?
  • Ensure that women understand that they have the control to make their own birth choices.  Feeling as though they have no control is a huge factor for anxious people, but encouraging informed choice and putting women at the centre of their birth experience can help to alleviate this.

As with almost every discussion of maternity experience, continuity of care becomes an issue.  Where women know their birth professionals and have built up a relationship with them, anxieties are reduced.  Whilst continuity of carer is offered in places on the NHS this is far from the norm at this moment in time.  If you struggle with anxiety then there are care options available to you to ensure that you have continuity in pregnancy and beyond:

  • Use an independent midwife.  There is a cost involved in engaging the services of these professionals, but it is always worth speaking to them before dismissing the idea on the basis of cost, as there may be ways that the cost can be reduced.
  • Use a OnetoOne midwife.  This is a “free at the point of delivery” service, but unfortunately it is only available in some areas.  Find out if they are commissioned near you.
  • Use a doula.  Doulas support women and their families during pregnancy, childbirth and early parenthood. This support is practical and emotional but non-medical in nature.  Again, there is a cost involved, but there are ways that this can be reduced so it is worth contacting your nearest doulas to discuss the options open to you.

Lindsey Middlemiss (aka “Newbury Doula”) is having lots of discussions at the moment about the wider provision of doula support for women with high anxiety of at high risk of PND, including women who have experienced baby loss or who have had birth trauma.  There is a possibility of some NHS funded pilots and research studies in the future, and the Doula UK Access Fund will likely be changing and expanding its criteria.  We eagerly await developments in this regard.

#MatExp “Language” Champion Leigh Kendall has written extensively about support for bereaved parents and I know she will be suggesting further actions during #FlamingJune.  Therefore I don’t want to focus too much here on anxiety in those who have experienced loss, but one thing did come out loud and clear from the discussions we had on Facebook:

There is currently no standard care pathway for those who are pregnant following the loss of their baby.  They might be labelled “high risk” depending on whether baby loss was a result of pregnancy complications, but their emotional needs are not automatically met.

This is staggering to me.

This has to change.

On a positive note, one member of our community is aware of midwives at her local hospital looking into setting up Rainbow Antenatal Clinics specifically for those who are pregnant following loss.  Is this something that you could look into at your hospital?  Is this something you already offer?

Another positive that I would like to finish on is the new provision of antenatal appointments from our health visiting teams.  Vanessa (aka Frustrated HV) had this to say on the subject, with specific reference to pregnancy following loss:

“I really do hope that the antenatal visiting programme being undertaken by health visitors & the increased communication between midwives & health visitors & GPs will mean that fewer women experience this neglect… Because it has to! A known history of loss in or around pregnancy should now automatically trigger (through midwife reporting) a Universal Plus antenatal health visiting service. Which would mean that you would have support throughout the pregnancy (as well as after) & signposting/referral to more specialist services if needed. No one should still be experiencing this type of trauma. You are correct that lots still needs to be done, but lines of communication are being created & general awareness is improving & I know that with the continued efforts of all the people I have seen in #MatExp & through all the conversations & wisdom shown, we will change things for the better.”

 

 

Join the conversation. #MatExp #FlamingJune

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Life after birth trauma

My son was born in 2009 via emergency section while I was under GA. His birth affected so much and I suffered with PTSD and anxiety as a result. But life goes on, and this is what it’s like sometimes.

At first it is raw and oh so ugly. There are dreams when you sleep and dreams when you are awake. There are night sweats and flashbacks and anxiety attacks and panics. There are feelings of suffocation and of desperation. There are days when you cannot cope alone and the sound of your baby’s crying just cannot continue any more. There are days where you want to hide, to stay hidden and at the same time want someone to find you.

And then time moves on.

And then it is like all of that, only less intense. Like all feelings, emotions and responses have been sucked dry. Like the earth around you has breathed it’s last breath for you. Like it is time to move on. And your first thought when you wake is not how crushingly sad you feel or how prickly your skin feels or how desperately you want a different existence. That comes later. When it’s quiet. When your thoughts are whispers and your mind is still.

And then time moves on again and life picks up new interests for its enjoyment. Your memories of what happened are scooped into balls that get pushed to the bottom of the pile. What is important? Life. And it moves on, so you have too I suppose. But life after birth trauma is not so simple.

It creeps up on you. It waits around corners for happy moments to destroy. It is selfish. It is dressed in white when it should be in black; it should be clear for all to see. But it’s not. It is a marker. A point in your life where the world took a breath and did not dare to breathe out again. Where silence echoed and emptiness tried to suck you in. And you climb back; of course you do. But that climb changed you. And you won’t know by looking at me. You won’t remember.

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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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