Uncertainty and loss in Maternity and Neonatal care 2015

The Uncertainty and loss in maternity and neonatal care is a conference that is organised by Sands, Bliss and the Royal college of midwives. This was their 7th annual joint conference. I have attended three, and come away inspired each time. It is an opportunity to hear what is going on in the field, and network. I will talk about the parts of the conference that stayed with me, and will add some other  bits to this post that I want to share with you, at a later date, when I receive the information from some of the presenters.

Professor Lesley Page who is the president of the Royal College of Midwives gave the keynote address She was the first professor of midwifery in the UK at Thames Valley University and Queen Charlottes hospital. In 2014 she was made a Commander of the British Empire.

The address was about setting the scene. She described how it is a critical time to consider how we best prevent stillbirth and neonatal loss, as well as injury from pregnancy and birth; and support the those parents who have experienced loss, given the current reviews of maternity services, in England and Scotland. Recent evidence from MBRRACE reports provide the opportunity for local services to review their outcomes and approaches to improving care.

She highlighted that there was a wide variation of stillbirths and neonatal deaths throughout the UK. There are two crucial reports, the Kirkup report and the Morecambe bay report, which have made strong recommendations.There are two maternal reviews going on in England at the moment that were triggered by what happened at Morecambe bay.Lesley Page pointed out how crucial  listening is to compassionate care, and improving the safety of care. Services must have the capability to respond to individuals in a personal way. Dignity, respect and compassion are fundamental to care.We all need to understand what it is like to walk in the shoes of the patient, and what it is like walk in the shoes of the professionals.

Part of my stillbirth counselling work involves listening to women or couples who have not been happy with their care,and are left traumatised . I find that some people feel that  even though they had a negative outcome, it would have been different for them, if they felt cared for.

Professor Alan Cameron was the next speaker. He has been a Consultant Obstetrician for 20 years. He gave some updates and insights from the Each Baby Counts programme. The aim of the programme, is to reduce the number of babies who die or who are left severely disabled as a result of incidents occurring during term labour, by 50% by 2020. Perinatal deaths in Norway fell by 50% in the last two decades. £500 M per year or a fifth of the maternity budget in the UK is spent on litigation.

The next session was one of my favourites. Isabelle Defaut-Juneja told a mum's story.

"I am very proud to have been asked to take part in this conference. Like most parents I am always happy to talk about my children and when asked to talk about my daughter who died, I always jump at the chance as I hope that by sharing her story we might help improve things for others. Prem Amour's life may have been short however it has been strong in helping others around her. With my talk I wish to take people on a very personal journey of expectation, motherhood, death, birth, loss, grief, hope and life again. I won't be talking about stats and figures, I simply want to talk about a couple who were eagerly awaiting their baby girl, a couple who's world was about to change, who were about to become parents and suddenly did become parents but not in the way they had dreamt about..."

Isabelle is a mother of three, an actress, and voice over artist.She also volunteers for Sands. I love the parent perspectives, Isabelle started off by asking everyone to forget that she was a patient, and to not look at her as a case, or case study, but to bear in mind that she was a daughter and a mother. Those words were so powerful, and what I sensed happening was the audience walking alongside Isabelle, when she told her story. Isabelle gave a moving account of the stillbirth of her daughter Prem-Amour, in June 2011.She had a normal pregnancy. At 26 weeks her movements stopped. Noone looking after her had said if you have any concerns this is my number. She never saw the same midwife throughout her care. When she was admitted to hospital the Midwife could not find a heartbeat, and the Consultant could not look at her in the face. Isabelle felt like she was looking after the Consultant. A second Consultant was brought in, who was visibly moved by what had happened to Isabelle. He ended up sharing his experience of a recent loss with her! Isabelle described a range of feelings that she experienced in hospital, She felt that she had done something wrong. She was given the choice of delivering straight away, or going home and coming back in 48 hours. Isabelle said that although she was grieving, she was able to look at things with another perspective and felt that she was lucky, as her daughter had made her and her partner parents. Her care from Midwives was mixed. She needed to look after some midwives, some were supportive, some were robotic and some were your worst nightmare. However the midwife who was there at her delivery, treated her daughter, as if she were special. Isabelle did not want to leave the hospital, as it had felt like a safe haven. She does not know why her daughter died, and has had two children since.

All the women in the row I was sitting in had tissues out, while Isabelle spoke. There was something about her story that had a huge impact on most of the people in the audience. I was aware of my heart beating rapidly as she described her experience. This was strange for me, as I am aware of the context, it is what I hear on a day to day basis, and I was still moved deeply, and wanted to reflect on what I had heard.

 Chloe Shaw was the next speaker, who is a Phd research associate within the Institute of Women's Health at University College London, where she is researching end of life decision making for critically ill babies on the neonatal unit. Some of the findings were that many deaths occur after a decision not to intervene after a birth. Decisions need to be made in the best interests of the baby and the family, and the decision making process needs to be shared, Women felt they had less than optimal communication with doctors.

Dr Laura Price from Sands gave an overview of research and prevention. In the UK in 2013 15 babies died every day. There were 3,286 stillbirths, and 1,436 neonatal deaths.Black and Minority Asian women's babies in the UK are at 50% higher risk  in pregnancy, followed by mothers living in poverty where the risk is 57%, followed by teenage mothers where the risk is 39%. Laura mentioned the POP study where we hope to get better at identifying babies at risk so they can be closely monitored in the third trimester. Laura also talked about the Insight study, which investigates bereavement care practices.

Sam Collinge who has been a  Bereavement support specialist midwife for 16 years at University Hospitals Coventry and Warwickshire NHS Trust,  spoke about building and developing a quality bereavement service in maternity. She talked about the challenges of setting up a service, how there is a variability in roles and responsibilities nationwide. There is no job description. There are variabilities in hours needed, pay and banding . There is a lack of understanding of the role and few midwives have support from the Head of Midwifery. The Bereavement midwife works in isolation and has a lack of emotional support.Some of Sam's recommendations were that the Midwives needed to share their practices with each other. Have regular one to one meetings with management, at least half an hour each month, The use of the Sands Audit tool. Mandatory training from Sands for Bereavement staff. I was able to catch Sam in the break to ask her more  about her role. I hope to stay in touch with her.

Cheryl Titherly and Sarah Finnegan introduced us to the Sands new Bereavement care Training.  Although the UK's stillbirth rate has fallen in recent years, one in every 216 births was a stillbirth. One in every 370 babies died within the first four weeks of life. Sands reviewed its training for professionals in 2013. The recommendations were to include more skills development particularly around communicating with parents. They recruited skilled facilitators with an understanding of the parents perspective. The new training was launched in 2014, and awarded professional accreditation by the Royal College of Midwives. The aim of the training is to enable health professionals to develop the knowledge, insight and skills, to provide high quality, sensitive care to parents who experience the death of a baby, before during or shortly after birth.

Karen Wright and Karen Hughes gave us an overview of the work they do providing hospice care for neonates and their families at Hope House.

After lunch we had Claire Lenighan give her story as a parent about the long journey from labour to home.Claire is a mum to Angus and Alex.She is also the Head of Supplier Engagement and Trading Academy for Asda stores. Claire shared her experiences of the short, medium and long term impacts of extreme prematurity on one family. Most people want to sleep after lunch, and its hard on the person who has that slot. Well, the conference organisers so knew what they were doing by giving Claire that slot. I doubt there is anyone who could have slept through what she presented.She made us all laugh at several points throughout her presentation, but you also got a real sense of how harrowing, and painful the whole experience had been for her. The theme throughout Claire's presentation was that the things people say have enormous impact. Her long stay in hospital when her son was born. How when she went to the bathroom in her room the only thing in there, was a J cloth. The lack of privacy on the Neonatal Intensive care unit, and how you could hear everything that was being said.She talked of her high anxiety levels while she was in hospital, and all the different alarms that went off in Neonatal Intensive care. A breastfeeding midwife came up to her while she was on the ward, and said "I hope your baby doesn't die.". She talked us through the different routines and superstitions she had each day, that she needed to go through before she left the unit. Claire mentioned how much she valued relativity and it helped her knowing that things could be worse, that there were people who were worse off than her. This is what helped her, and yet for some other people thinking positive is tyranny. One of the worst things for Claire was if anyone felt sorry for her. She remembers all the faces, the names, the kind words and the common sense from all the people she met on her journey.

Claire raised lots of issues that I hear in my consulting room. It reinforces what I know, that people never forget how we communicate with them, and what we say when they have a traumatic event.

The final part of the day was a Panel discussion chaired by Paula Steele who is a Bereavement counsellor at St George's hospital and also the Chair of Child Death overview panel. Paula also works as a facilitator  for Child Bereavement UK. The discussion was Rituals or faith-meeting cultural needs with Katie de Freitas, who is Quality Improvement Lead at Great Ormond Street Hospital, Reverend Tristan Alexander-Watts, the lead chaplain at  Whipps Cross Hospital, Rehana Sadiq Chaplain University Hospital Birmingham, and Richard Putt the Director at Levertons Funeral Directors.

Katie de Freitas asked us to think about our cultural expectations of grief.We may not understand individuals cultural beliefs, practices or choices but it doesn't make it wrong or bad. It just makes it different! Black and minority Asian women report a poor experience of care, and less trust of professionals. They are not given adequate information. Women say that communication and kindness are what matters.How does your cultural bias impact on the women you care for?
We all need to understand the dynamics of the choices women make. Cultural competency is an integral part of a woman's care. Health professionals need to use cultural information sensitively to avoid making assumptions, stereotypes and broad generalisations.No individual is a stereotype of their culture but rather part of a unique blend of the diversity found within each culture.

I met Tristan many years ago, we lost touch so it was good to reconnect with him after so long. He talked about the difference between Pastoral and Spiritual care, and how we need to make use of our chaplains. Midwives need to know that chaplains are there to support them too.

Reyanah spoke about her experiences as a Muslim chaplain, and assumptions that people make. Chaplains are there for people of every faith.

Richard Putt told us about his role as a funeral director.

Dr Tracey Mills talked about improving support in the next pregnancy after stillbirth.Most women conceive again, 50-80%, within 12 to 18 months. Anxiety and vulnerability are common, and often persist beyond the birth. Psychological distress in pregnancy increases the risk of a poor outcome. Fathers are also affected. Emotional support is important.

This is something that I work with in pregnancy loss counselling, and find that if the women I see are offered consistent care, and able to have a choice in the type of care they need in the next pregnancy, alongside counselling, they feel reassured. There is no denying that a woman will feel anxious in the next pregnancy after a loss.

The closing Plenary was given by the lovely Julia Samuels. Julia is a UKCP registered Psychotherapist, and BACP accredited Psychotherapist. She has worked at St Mary's Paddington as a Psychotherapist for Paediatrics for the last 23 years supporting staff and families when a child is dying or has died. She is Founder Patron and Trustee of Child Bereavement UK. She is also Vice President of the BACP. Julia's presentation focused on the paradox that when you allow yourself to be emotionally open is also when you have the capacity for most growth and resilience.

Julia started off her presentation talking about the importance of self-care for professionals. She joked about how she had been given the last slot. How people who work in the NHS are asked to be compassionate in a brutal, relentless system. How to be strong you need to have vulnerability. The importance of including exercise, meditation or something to take care of yourself every week. Or five minutes every hour where you do nothing. This caused an uproar, in the audience, five minutes every hour doing nothing Julia, dream on! Something that resonated for some people was that most people who work in the profession can't say no, and if you never say no, what is your yes worth???Amen, Julia. Keeping yourself busy can be an Anaesthetic to feelings. Julia highlighted the areas that make things difficult for us. It concerns babies. It normalises what is abnormal. Situations occur when you are exhausted. The workplace is not supportive. Professionals experience secondary trauma. There is a culture within the system of sacrificing oneself.

I know Julia from my Metanoia days when she was a tutor there. It was good to see her and have a quick catch up before the end of the day.

I got a lot from the Conference, and would recommend it to everyone who works in the field, or who has a special interest.

Have a good week.