Thinking Differently Together - First 1,000 Days Of Life

Suffolk and North East Essex Integrated Care System (ICS) 1. 1. Introduction Online event Wednesday 23 March 2022 ‘Thinking Differently Together’ about… The first 1,000 days of life: Part 1 The experience of children and families during the first 1,000 days from conception is crucial to their health, wellbeing and life chances. Even before conception, it is important to be as healthy as possible to ensure a safe and healthy pregnancy. Our independent Chair, Rachel Heathcock, East of England Local Government Association introduced the event, explaining that we would be considering a broad range of issues and diverse perspectives from preconception to birth. This event was part one of two; our second event will focus on the importance of highquality support in early life for children and their families. Our learning from both of these events will contribute to a number of areas of our strategy development so that together all our partners can give everyone in Suffolk and North East Essex the best start in life. Rachel Heathcock East of England Local Government Association challenges parenting newborn baby birth changes life feelings hospital excitement unhealthy healthy help happy major home care sad challenges parenting newborn baby care changes life feelings hospital excitement unhealthy healthy help happy major home care sad challenges parenting newborn baby birth changes life feelings hospital excitement unhealthy healthy help happy major home care sad challenges parenting newborn baby birth changes life feelings hospital excitement unhealthy healthy help happy major home care sad challenges parenting newborn baby birth changes life feelings hospital 1 | Suffolk and North East Essex Integrated Care System

Caspar, Kyle and baby Ivie: our maternity experience As a transgender man what was your experience of pregnancy like? Caspar: My experience of pregnancy was pretty good because of Annie, our midwife. She ensured that most of the midwives were aware of our situation and I don’t think we had any incidents where they said the wrong pronoun. What was most important to you during the pregnancy? Kyle: Other than Annie as our midwife, we were in and out of hospital as standard anyway with things such as scans, and at one point Ivie was breach as well. So we were talking to consultants, doctors, triage, the midwives, that sort of thing. So we’d go in and they’d know it’s Caspar, they’d know the situation. It was quite nice over our journey, before even going in for the final labour, to be recognised and it be known already who we are. How important are pronouns? Caspar: I think pronouns are important because that is how you identify yourself. I think it’s a good idea to have a form with your care plan, or on your charts, that says your preferred pronouns, how you want to be identified. But also there is no harm in asking the person what their preferred pronouns are. Kyle: I think Hollie was the first midwife that actively asked us what your pronouns were... Everybody else referred to his sheet and saw it was ‘Caspar’ and ‘him’ in general, but Hollie was the only one that actively asked, “What are your pronouns?” And that was fantastic. Caspar: It was good because it showed that they had interest in the care that they were giving. It felt good. Do you have any advice for staff? Kyle: The midwives need to be not scared of a situation like ours, the doctors need that as well. Doctors, obviously, they’re darting around a hospital at the speed of light, with so many different patients and so many situations, they don’t really have a chance to stop and breathe and assess the identity or the mental state of a patient so to speak. We had a male doctor that came in and assessed Caspar on quite a few occasions, you could tell he was nervous… and he was, like, “I am OK to examine you down there? Are you going to be OK?” It was good that he was asking the questions, but - relax! So yes, it’s all hospital staff, just relax and not be afraid to ask those questions. Did you complete a birth plan? Kyle: What Annie had prepped for us was that we were to remain in the delivery rooms rather than going up to the ward. That way Caspar would have his own bathroom and toilet in the delivery room. And they made sure there was a butterfly on the door which apparently is supposed to represent a somewhat unique situation. It was quite breath-taking actually going into the delivery room and following our birth plan, because I wasn’t anticipating it to be all set up and ready - there’d be one thing missing, or lost in translation. But no, everything on our birth plan went ahead perfectly well, so it was really good. Caspar: Not only that but Annie made sure that there was a drug that was given an hour after birth which stopped breast milk from producing, so that really helped my mental health as I didn’t have to worry about going through that, so that was brilliant. 2. The best start in life: lived experience Caspar, Kyle and baby Ivie Thinking Differently Together | 2

How would you say pregnancy affected your mental health? Caspar: Mentally challenging of course … but the care that I received I don’t think affected it in a negative way… Kyle: Because they made it so much more comfortable, because everything we discussed with Annie, and we had planned on the birth plan, and our continuous visits to the maternity unit, and everybody becoming a lot more familiar with the situation... the nerves, and the potential for mental stress that play in your head diminished. And it became almost an enjoyable experience, because that is most important. How would you summarise your experience? Kyle: I suppose originally, you wouldn’t expect a transgender man to want to go through it, because it’s experiencing something that realistically you didn’t want your body to experience in the first place. But having said that, that being a risk, with everything that happened and everything that was put in place, it was quite exciting. We even plan to have another child before you do your transition, don’t we? Finally – is there anything maternity services could do differently? Kyle: The one thing … being Caspar’s partner, I’m very protective… He’s very laid back and most of the time me being protective wouldn’t even have affected him, he’d be ‘don’t worry about it’, and most of the time that was the case. But going into triage, going into the maternity ward, you see a lot of posters, documentation, even the pregnancy folder you get given and the ‘mum bags’, the ‘mum and baby’ app, are very female orientated. And it’s a very standard thing, it always has been, but it would be interesting to see how that could possibly be altered in a way that’s not so ‘mum and baby’. So it could be, as we are, ‘father and baby’ or ‘parent and baby’, and be more inclusive. It’s just the small things that, ok we’re not quite there yet, but we are getting there. With thanks to Caspar Cotterill and Kyle Taylor for their feedback, thoughts and involvement with Maternity services in Suffolk and North East Essex Georgetta’s story Georgetta moved to the UK from Romania with her ex-husband, who abused her. She moved away from him and has been living in Suffolk for the last 6 years. Home Start Suffolk has been helping Georgetta manage the changes that come with a new baby. Georgetta recorded her thoughts and feelings just three days before the birth of her baby. Please note: Some of the content of Georgetta’s story may be upsetting. “I think the problem was between me and my partner. He was like violent and aggressive, and the police was involved in this. And I think the police started to know about my case. But… um… it was a blessing for me to meet with you, Natalie and Home Start because, you know when you are like in dark and you are not seeing the light. And somebody coming to and give you like a hand and they say ‘we are here for you, you are not alone and you will be helped.’ And this for me was, was like everything. Even I was working still two weeks before giving birth to the baby, you know, like it’s Friday so it’s not long. So… it’s just last week I stopped work but the money’s not enough and I was paid, like minimum wage. What to pay first? Rent? Bills? Food? So, what is left to buy something for the baby? There’s nothing left there. And I was so 3 | Suffolk and North East Essex Integrated Care System

stressed and desperate. Then came in Home Start and I’m so grateful for everything they bring for me and they provide for me. I am blessed because I have like everything, for clothes for the baby. The only thing I buy, it was a blanket from a charity shop, which was £4. And now I have a lot of stuff, like everything for this baby. All this is just from Home Start. I have clothes, I have a blanket, I have a bath for the baby, the products, like hygiene products for the baby. Which is very important. The chair for the baby, which I never dreamed I can buy, on which money? There’s nothing, like I said, there’s nothing left. Even, to go to work I have a car, because I need transport for work, and when the petrol start to be up, that’s a problem, my income was the same and the price goes up. Even food, I buy less, and I eat less. I don’t know what I would have done if Home Start was not next to me. I am alone here, I don’t have family, I don’t have no one. Because a long time ago with my exhusband I was victim to abuse. I was not allowed to have friends and… for me it’s hard… even, I am, I am not that kind of person, I am open, I like to have friends but for me now it looks like it’s too late. For I don’t know how I can explain, even I go to work and I come back, but there’s just work and that’s it. There is nobody for me here, like mother, father, sister or somebody else. And no friends for me. So when I see you coming in my house you know it’s like, I don’t know, it’s a hope for me. I… I enjoy to talk to someone, to tell about my problems, there is nobody there. Yes it’s true, sometimes I talk alone in the house, maybe I have this problem with mental health. I forgot to say about the voucher you sent me from Home Start in the Christmas time. I received it by post because I was with Covid then. And this helped me a lot because I can buy some fruits, fresh ones I want. And um, this voucher I received which will be a lot of help for many, many things like a slow cooking machine. And… you and Natalie were so nice with me and all the time you talk with me and give me hope and was there for me, and looking after me, and… I really feel like I have someone. And I want to say thank you for everything.” Thinking Differently Together | 4

Preconception and the prevention of long term conditions Helen explained that foetal development, the complexity of a pregnancy and birth, and a child’s long-term health outcomes are influenced from Day 1 of gestation. The pregnant person’s health status can change the child’s DNA and impact into the child’s adulthood, and impact their long-term health and wellbeing. However, half of all pregnancies are unplanned, so many people may well not have considered their health before gestation. By the end of the first month after gestation, when most people still don’t know they are pregnant, the baby has already developed a heart, digestive system, backbone and spinal cord. Brain cells are starting to form and the neural tube where the brain and spinal cord develop, is already in place. By Day 56 most of the baby’s organs have developed. It is probably Week 9 or 10 before they first see their midwife, when they will first discuss their pregnancy. At that stage it is not too late to make these changes, but for maximum influence on foetal development, we should consider our health before conception and make any lifestyle changes we need. Compared to the East of England region, Suffolk and North East Essex has a higher than average number of preterm births (born before 36 weeks and 6 days’ gestation). Often preterm birth is normally caused by a complex pregnancy, so we need to help families, including both partners, to be as healthy as possible. We also know that health, wellbeing and the wider determinants of health, such as housing and employment status, all have a direct impact on the risk of preterm birth too. The diagram below shows the risk factors at conception that can impact on pregnancy. 3. Understanding the story Helen Bowles, Maternity and Neonatal Programme Manager, Suffolk & North East Essex Local Maternity & Neonatal System Source: Public Health England (2018) Making the Case for Preconception Care In addition, deprivation and ethnicity are key factors in long term outcomes. A child born into deprivation has a higher risk of developing diabetes, asthma, learning disability, autism or ADHD, or congenital abnormality. As an adult there may be a higher statistical risk of being obese or a smoker. The parent’s health status at conception can therefore significantly impact on the child’s whole life. 5 | Suffolk and North East Essex Integrated Care System

In Suffolk and North East Essex we have been looking at the equity of our maternity provision, which has identified: • Ipswich & East Suffolk and North East Essex have above national averages for obesity and smoking in pregnancy. • Ipswich & East Suffolk and North East Essex have above national average numbers of babies with very low birth weight. • Ipswich & East Suffolk is below national average in uptake of folic acid - the national average is only 30%. • Ipswich & East Suffolk has above national average numbers of teenage pregnancy, and highest numbers of mothers of ethnic minority origin. • In all localities our rates of hospital readmissions are above national averages. Reasons can include feeding difficulties, and jaundice. What can we do? • Take a system-wide approach where we make every contact count. For example, our education establishments can explain the importance of good health for both parents going into pregnancy; and during smear tests the practice nurse can check if a person is planning a family and give advice. The graphic below describes how we can all contribute. • Support our families in our most deprived wards with the wider determinants of health including housing and unemployment, will have the biggest impact at conception and in pregnancy. This year the Maternity Programme has funded some of our voluntary sector partners to support families through their pregnancy and these wider determinants. • Promote ‘Ready for Pregnancy’, a simple online tool of lifestyle checks for families planning a child. • Support people with long term conditions and serious mental illness, through their annual health checks, with their choices and their medication. • Provide in-depth support to those at highest risk including some ethnic minority groups and those living in deprivation. • Hard-wire Maternity into our Alliances’ prevention and communities agendas, as well as whole system working. Pregnancy and childbirth is not a discrete clinical pathway; it influences lifelong health and wellbeing. Addressing inequity from preconception, as well as during pregnancy, can influence the next generation of adults and our disability and Long Term Conditions agendas. There is no earlier opportunity than at planning and conception to positively improve the complexity of pregnancy, the child’s lifelong health, and inequalities. Thinking Differently Together | 6

The epigenetics of pregnancy and impact of childbirth Teri explained that epigenetics is the study of how behaviours and environment can cause changes that affect the way our genes work. This means a person’s health during pregnancy can affect the future health of the child. Ideally everyone who is planning a baby would be ‘match fit’, ready in the best way for pregnancy and to give birth, but of course this is not always possible. External factors We know that in pregnancy the external environment impacts the internal environment. Maternal adversity, which includes deprivation, stressful events, anxiety and depression, and malnutrition, can cause biological changes that impact on the baby’s genes. Later in life, for some adults these changes may be displayed in neuro-behavioural outcomes such as anti-social behaviour, autism, schizophrenia, depression and anxiety. Smoking Smoking creates changes in the genes involved in placental and foetal development. In pregnancy in-utero exposure to nicotine disrupts placental cells, leading to placental abruption and difficulties in placental implantation in the uterus, which can lead to miscarriage. Smoking increases the risks of preterm birth, stillbirth and low birth weight, which as discussed above is a particular issue in our area given the high rates of smoking in pregnancy locally. In babies, nicotine exposure can lead to higher risk of Sudden Infant Death Syndrome, metabolic disorders, cardiovascular disorders and neurobehavioral disorders. Research also suggests smoking in pregnancy is linked to a 50% increased risk that the child may be overweight or obese. Obesity in pregnancy Obesity has strong links with social deprivation, and Black British and South Asian women have a significantly higher incidence of obesity. 52% Between 2017-19 of women who died in maternity were obese or overweight Source: MBRRACE-UK - Saving Lives, Improving Mothers’ Care 2021 In pregnancy, obesity is associated with an increased risk of miscarriage, gestational diabetes and pre-eclampsia. People who are obese are less likely to go into labour and so there is a higher likelihood of increased interventions such as induced labour or caesarean birth. There is also an increased risk of bleeding during or after birth. Research found that those who have experienced gestational diabetes in their first pregnancy have a 30% to 84% risk of it recurring in a later pregnancy. For babies, there is an increased risk of respiratory infections and metabolic disorders among babies born by caesarean section. Research in the USA also found 15.7% of children born by caesarean section were obese compared with 7% born vaginally. Birth interventions and long-term childhood illness We don’t all have a choice about how we give birth, but it is important to recognise that birth interventions can impact on long-term illnesses for the child. Researchers analysed linked population and health data of 491,590 healthy women and their Teri Gavin-Jones, Clinical Lead Midwife, Suffolk & North East Essex Local Maternity & Neonatal System 7 | Suffolk and North East Essex Integrated Care System

children born in New South Wales between 2000-2008, and followed their health until 2013. They found: • Infants who experienced an instrumental birth following induction or augmentation had the highest risk of jaundice and feeding problems. • Infants born by caesarean section had higher rates of hypothermia following birth. • Children born by emergency caesarean section had the highest rates of metabolic disorders in later years. • Odds of respiratory infections, metabolic disorder and eczema were highest amongst children who experienced any form of birth intervention. Ethnicity and deprivation Research demonstrates that women who are vulnerable, or from areas of deprivation suffer worse clinical outcomes during and after pregnancy. Death in pregnancy is more likely in Black and Asian women, and minority ethnic families also experience higher rates of stillbirth and infant mortality (under 1 year old). Black and Asian women have a higher risk of dying in pregnancy White women 7/100,000 Asian women 2x 12/100,000 Mixed ethnicity women 2x 15/100,000 Black women 4x 32/100,000 Women living in less affluent areas have a higher risk of dying during or after pregnancy Least deprived 20% 8/100,000 Most deprived 20% 2x 14/100,000 Source: MBRRACE-UK - Saving Lives, Improving Mothers’ Care 2021 In 2019 in England and Wales, rates of stillbirth per 1,000 births were: Black Asian White 7.1 5.1 3.4 In the same period, rates of infant mortality per 1,000 births were: Black Asian White 6.4 5.5 3.0 Source: ONS Other factors In addition to all the issues above, the constellation of biases that contribute to women’s deaths in pregnancy or up to a year afterwards also includes physical and mental health problems, unemployment, domestic abuse, being known to social services, being born outside the UK or a non-UK citizen, age, delayed ante-natal care, and previous pregnancy problems. Thrombosis and thromboembolism are the leading causes of direct death. Thinking Differently Together | 8

A constellation of biases Pregnant or in the year post-pregnancy 566 Physical health problems 342 Mental health problems 198 Overweight or obese 281 Known heart disease 16 Live in deprived areas 168 Smoking 177 Born outside UK 216 Non UK citizen 52 Minority ethnic group 119 Unemployment 94 Non Englis h speaking 22 Aged over 35 210 Domestic abuse 61 Known to social services 131 Delayed antenatal care 107 Previous pregnancy problems 209 566 women died during or up to a year after pregnancy in the UK and Ireland 510 women (90%) had multiple problems Source: MBRRACE-UK- Saving Lives, Improving Mothers’ Care 2020 Maternity is not an isolated event, it is the launchpad of health and wellbeing, and how a baby is gestated influences their long-term health. In Suffolk and North East Essex we have great relationships locally between services and the ideal opportunity to give positive health messages, focusing on those areas where we are above the national averages in pregnancy and childbirth factors. The gold standard would be to think about the best start in life from preconception to gestation to birth onwards, as a launchpad of health and wellbeing. Maternity, public health, social care, the voluntary and community sector, can all contribute at this essential time. We know that families are open to lifestyle and wellbeing messages, but building relationships of trust is essential. We want maternity to be embedded in whole system working to maximise child health outcomes. 9 | Suffolk and North East Essex Integrated Care System

Compassion Fatigue: the challenges for staff Cat explained that the Professional Midwifery Advocates (PMA) role helps midwives to identify ways to improve their own and their team’s practice, as well as creating a safe space for midwives to reflect. Colleagues come to PMAs for a wide range of reasons. It may follow a specific incident or trauma, and especially through the pandemic feelings of burnout or feeling inadequate. We help people with reflective discussions for their professional revalidation. Some people want to talk about difficulties they are experiencing outside of work. An increasing number of people are coming to us with compassion fatigue, and the following piece, based on the sorts of things we hear, may help people to understand some of the feelings they share. “[exhales]… I’m just going to sit here for a little longer. I just… I can’t quite face going back out there yet. I just… need a couple more minutes to… I don’t know what. I don’t know what the answer is at this point. I’m just exhausted. I didn’t sleep very well last night, I couldn’t switch off, I kept thinking about the shift that I’d just done and the fact I needed to come back and do it all again in a few hours. I can’t find my mojo today, this week, month. Actually I don’t remember the last time I had my mojo… Every day we come in and it’s like the managers think we can split ourselves in half! [sighs] At least the couple I’m looking after are nice… but I can’t seem to connect with them. What happened to me? A global pandemic…? I don’t know quite how long we can keep blaming that. Perhaps I’m just not cut out for this. I used to be so keen, so eager. I loved coming to work not knowing what the day was gonna bring. I was addicted to that adrenaline rush. I loved caring for people, being with women, nothing beat a birth for me… Now I couldn’t tell you the name of the person I was looking after yesterday… I do remember the time of birth though: 18:57. Barely enough time for me to finish my paperwork before I had to hand over. What has happened to me? Why do I feel so disconnected? I keep losing my temper with my partner. He just doesn’t seem to understand, he can’t grasp that I’ve got nothing left at the end of a shift. I have got no patience with anybody at the moment. I’ve started looking at other jobs, seeing what else I can do with a midwifery degree. I just feel so helpless here. I need to do something because this isn’t sustainable… That’s my patient’s call bell. I’d better get back. Compassion fatigue is the profound physical and emotional exhaustion that caregivers can develop over the course of their careers. It is a gradual erosion of all things that keep us connected to others in our caring role and the reason why we initially started wanting to give care. It takes away our empathy, our hope, and our compassion for ourselves and others. Compassion fatigue doesn’t just affect those who are professional caregivers such as midwives and nurses, it can affect anyone who gives care to another person. Symptoms can include irritability, frustration, sadness, depression, difficulties sleeping, feelings of worthlessness, and heightened emotions. People will often isolate themselves from family and colleagues, may not practice self care, or may misuse alcohol, smoke or use drugs to try to manage their feelings. At work they may try to do too much, become task focused, feel under-resourced or look to others to blame. They may lose the ability to empathise and may not see the value in what they are doing. Being overwhelmed can cause physical illness and some leave their profession. However, there are things we can do, starting with self care, attending to sleep, nutrition, hydration, exercise, and doing things for ourselves. A network of trusted supporters is vital, where staff can be met with empathy and understanding; PMAs such as Cat can help in this role, helping to support, to challenge the negative emotions and see alternatives. NHS Foundation Trust East Suffolk and North Essex Cat Cracknell, Professional Midwifery Advocate, East Suffolk & North Essex NHS Foundation Trust Thinking Differently Together | 10

Sharon explained that Petals’ vision is that every parent has easy and timely access to specialist counselling following baby loss. In partnership with hospitals, Petals provides support for a range of losses that families may experience, described in the graphic opposite. Petals also provides support for healthcare professionals with their experiences of trauma and loss. In addition to these services, Petals provides support for birth trauma. At present all counselling takes place online. Referrals can be received from a health professional, or people can self-refer; an acknowledgement of a referral is made within 48 hours so people can be reassured they are able to access the service. They are then able to select a convenient time to talk with a counselling manager within 2 weeks, who will carry out a psychological assessment, -- discuss how they are feeling, identify any risks or whether the person needs to be fast tracked. The person is placed on a short waiting list, not more than six weeks, for a counsellor. Counselling usually lasts no more than six months, after which a post counselling psychological assessment captures how people are feeling now, followed by an evaluation and offer of follow up support. Karen explained that the psychological assessment completed by every Petals client generates a score based on their responses to 34 questions; and the same questions are asked again at the end of the counselling programme. Our data shows that 59.4% of the individuals coming to Petals have clinically defined levels of distress, with anxiety or depression, but, most commonly, trauma. By the end of their counselling the numbers still experiencing clinical distress reduces to 10.32%; deeper exploration of the data shows that these people usually have a history of mental ill-health or previous trauma. Supporting people through trauma and loss 4. How we can work together to make a difference Sharon Cocker, Petals charity Karen Burgess, Petals charity Healthcare Professionals Working with those experiencing pregnancy & baby loss TFMR Termination For Medical Reasons Miscarriage Farly Late Ectopic Recurrent Neonatal Death Neonatal loss up to one year after birth Stillbirth PAL Pregnancy After Loss Antenatal Anxiety 11 | Suffolk and North East Essex Integrated Care System

The first key principle of the Petals Counselling Model is to build a strong nurturing relationship between the person or couple, and the counsellor. The quality of our work depends on the quality of the relationship that the counsellor develops during their intervention, and the difference this makes is evident in the feedback we receive from clients. The counsellor will hold and bear the pain that the client is carrying, in a way that it is unlikely anyone else in the client’s circle of support will – those closest to the client will often be carrying the same pain. By being with the client through the process the counsellor is able to build the client’s trust in their own ability to cope, to find and draw on their own resources. The counsellor helps the client to build self-efficacy and confidence that they will be OK in the new world that they find themselves in. They will also recognise how devastating the client’s experience has been, and help the client to find some meaning and purpose in their lives. The Petals model is to support traumatic grief in therapy, recognising parents are grieving loss and experiencing trauma. The four-step process is: Step one Stabilisation, ensuring the client is safe. Step two Identifying resources for coping, helping them feel in control by identifying strengths they can draw on. Step three Processing trauma through therapy. Step four Grief work, helping the client integrate their grief into their lives and move forward in a healthy way. Gemma and Colin are a local couple who Petals supported in collaboration with their bereavement midwife. This is some of their feedback: “The counselling sessions were key, speaking to someone about everything.” “She created such a safe and supportive space.” “I would have got through the pregnancy, but my mental health would have been such a problem.” “My counselling has helped me keep my anxiety under control.” “It wasn’t until after I’d seen my counsellor that I realised how important it was to open up about these things and not go through it alone.” “Life Saving. Without their support I’m not sure I would have put myself through another pregnancy, they gave me the strength to give it one more go – thank goodness we did. Petals Peer Support Facebook groups Our Leaflet Follow us @petalscharity Email: Thinking Differently Together | 12

Continuity of Carer Nicola explained that the Continuity of Carer model aims “to ensure safe care based on a relationship of mutual trust and respect in line with the woman’s decisions” (Better Births, 2016). Maternity care is provided by a named midwife, who is involved from the beginning of the pregnancy, supported within a small team of midwives. The majority of care episodes will be undertaken by the named midwife, but there are also opportunities for pregnant people to meet the rest of the team members. The team provides all aspects of midwifery care, before, during and after the birth. This arrangement allows good relationships to be formed between the midwifery team and the pregnant person, and if the family needs additional support the team is better able to identify those needs and refer them to the right services to obtain help. Continuity of midwife support provides for more personalised care, through the building of more trusting relationships that enable the co-production of more personalised plans for pregnancy and birth. It also provides safer care and evidence shows it improves maternal and neonatal outcomes: • 24% less likely to experience preterm birth • 16% less likely to experience a pregnancy loss overall • 19% less likely to experience a pregnancy loss before 24 weeks • 15% less likely to experience regional analgesia • 16% less likely to have an episiotomy • 10% less likely to experience instrumental vaginal birth • 7 times more likely to be attended at birth by a known midwife Two local families’ feedback on the difference that continuity has made to their birth experiences: Nicola Heath, Better Births Lead Midwife, East Suffolk & North Essex NHS Foundation Trust “I think it’s hugely beneficial to have the same midwife, or within reason the same midwife, antenatally and postnatally. It can make a huge difference to how you feel during the birth, and also things that might not be picked up are picked up by seeing the same person. Building relationships with someone is really important, you have to be able to trust them and to do that you need to see them more than once. I think that it’s such a special time in your life it’s nice to share that with somebody from the beginning to the end. And I also think that continuity in care is so important. You’ve got some many choices to make and you need someone to talk through things with. And having a go-to person who is there for you, and you can pick up the phone and speak to them at any point, is really, really important. I would like to say thank you for the care of the midwife at the hospital who helped me during my second and third births at Colchester. I had a great experience and I think you are doing a marvellous job. Thank you.” 13 | Suffolk and North East Essex Integrated Care System

Locally we have been making progress in ensuring we have the resources in place to provide Continuity of Carer for all eligible pregnant people in our area. We want our staff to have a manageable caseload to help them provide high quality care. Our local Maternity Voices Partnerships are also supporting us to ensure we meet specific needs of our diverse communities. “I have to admit that when I was told about the way the new team would work I really didn’t think it was important to have met the midwife, as part of the community team, who would then delivery my baby. However, having had this experience, and being able to compare it to that I had with my first child prior to the establishment of Maple team, my opinion has completely changed. During labour it made a huge difference being supported by both Sam and Claire as I had already met them. I had to be induced which was something I had really hoped to avoid, having had this with my first child. However, this time was completely different. I think this was largely due to the fact the midwives supporting me knew my history, knew my pregnancy, and I felt more confident that they would help me as much as possible to have the birth I wanted. This meant I was far more relaxed which made the world of difference. Throughout the early stages having a midwife there who I’d met before was almost like having a friend in the room. There was no uncomfortable feeling that we needed to make polite conversation and my husband and I were able to feel as if it was just us, but with support there if we needed. During the more active final stage things happened incredibly quickly and the confidence I had in Claire made this so much easier. After the birth we were given the space we needed to bond with our daughter. It felt like it was just us there and again I feel that having met Claire during my pregnancy really helped with this. The follow up once we were back home by Claire and the rest of the team was also a really positive experience as I didn’t have to repeat my story again with someone new. But it also felt like they genuinely cared about how I was getting on and I think this stems from having been involved in the whole process from early pregnancy. I cannot remember the names of any of the professionals who supported me during my first pregnancy, or who delivered my first child. They were all very nice and professional but we did not develop the same relationships with them. However, I will always remember Sam and Claire, and the Maple Team, and I was genuinely sad to say goodbye. Our sincere thanks and best wishes with the team moving forward, Lauren, Dan, baby Edith and big brother Albert.” NHS Foundation Trust East Suffolk and North Essex Thinking Differently Together | 14

Our digital innovations to support people in pregnancy and caregiving Rachel explained that there has been a huge number of digital innovations in maternity services in the past year, and shared a summary of some of the more major digital media innovations, their importance and their impact on service users. Digital media incorporates social media, communication, graphics, virtual meets, publications and audio visual methods. Social media The ESNEFT Maternity Voices Partnership (MVP) Facebook pages have over 3000 followers, and they share news from all our trusts, current guidelines and articles. They signpost followers to resources, publicise events and surveys, and highlight issues and areas of concern. The wider ESNEFT Facebook page is a well known and trusted source for information and news. It has 9,500 followers, it enables the MVP to cover a vast geographical area and provides a great insight into similarities and differences in how families are feeling across trusts. The MVP’s Instagram page is another great resource to inform and publicise, using the power of the hashtag. It enables us to reach out to people and to network with like-minded accounts. Audio-visual These methods have developed more during the Covid pandemic, as different ways to gather feedback and reach out to service users. We asked for soundbites and filmed feedback. We have a collection of soundbites for a project we undertook based on language choices and respect in the maternity setting. Women and birthing people were able to record soundbites on their phones and send them to us by email or Facebook so they could literally have their voices heard. These experiences have started conversations to ignite improvements and change. We have also provided an online space for women and birthing people to ask questions. We have held virtual Q&A sessions on Facebook both live and recorded, where people can ask midwives about care, or the current restrictions. We have also held online listening events with specialist midwives present to answer any questions. We have also recorded and shared on Facebook virtual tours as people are unable to come onto the ward before the birth. These provide a sense of reassurance and familiarity to the service user whilst visits are on hold. Our Covid vaccination and pregnancy webinar was chaired by Mel Lewis, chair of Ipswich and East Suffolk MVP. It provided an opportunity for women and birthing people to talk about the vaccine and ask questions directly to GPs, midwives and other health professionals about maternity, fertility, or breastfeeding. It was very well received and can be accessed any time on the SNEE vaccination website. Rachel Chilver, Chair, North East Essex Maternity Voices Partnership 15 | Suffolk and North East Essex Integrated Care System

We also developed a workstream to analyse, develop and improve the Triage service across ESNEFT. Instead of a survey-based plea for feedback, we created a short video to share on website and social media, informing service users, past and present, of the current challenges and asking for feedback on their experiences. The feedback has been a crucial foundation to the maternity programme’s development and direction. Leaflets and publications We co-produced a series of infographics parent education leaflets to display in paper form and share digitally. We developed promotional material to help recruit new MVP members including postcards in red books and posters for clinic and maternity unit notice boards. We have provided an opportunity for service users to write a letter to their midwife and express the impact of their care. This gave an outlet to families who wanted to express their feelings and experiences after birthing their babies. We collected letters via email and designed and created a booklet that includes unedited letters and birth photography. Books were printed around Christmas 2021 and given to staff across the trusts as a keepsake to uplift, give thanks and refocus. Padlet is an online place where you can create single or multiple walls that are able to house all the posts you want to share. From videos and images to documents and audio, it is literally a blank slate. MVP has collaborated with the maternity programme to create education hubs for staff and families in Suffolk and North East Essex, with information and resources in 17 other languages. Graphics In Colchester, the Juno suite needed a revamp; after discussions with midwives over what imagery would be preferable, we suggested that we could ask local women and birthing people to share their own birth photographs to display and empower others. The response was overwhelming, over 120 women, and resulted in some really powerful and beautiful images, known as the Birth Goddess Project. “Childbirth is an experience in a woman’s life that holds the power to transform her forever. Passing through these powerful gates – in her own way – remembering all the generations of women who walk with her... She is never alone”. Suzanne Arms Thinking Differently Together | 16

Accessing services when English is not your first language Bruce explained Ipswich Community Media (ICM) is a small charity working primarily in the Westgate Ward of Ipswich, which is one of the most deprived wards in the country as well as one of the most diverse wards in Suffolk. Our mission is to challenge inequality by empowering people to transform their lives through learning and creativity. As well as music and media, ICM teaches English to Speakers of Other Languages, and ICM now teaches almost 400 migrant students a year. We have built relationships with health services, public health, and the Clinical Commissioning Group to develop courses that embed health topics such as diet, nutrition, exercise, as well as accessing primary and secondary care health services, which has been hugely successful. Alongside this, we work with volunteer and community champions, such as Monika, who over the past year has been supporting migrant women to engage effectively with local maternity services. Monika explained that it was a privilege to work with the women in her community, sharing information and good practice in how to find help as it is all very new for them. Even without a pregnancy, new baby or children to cope with, it is unbelievably difficult coming to a new country as everything is different. You may see the same types of people but sometimes you don’t understand – this is more than just a language barrier, it is much more complex. One challenge is a lack of trust in health services. In our home countries the national health services are underfunded and have a lot of issues; many people use private healthcare thinking that if you pay you will get more, and don’t experience public services as something positive, professional and supportive. So the first challenge is to help people to trust that the service will be good, with amazing people supporting you at a most incredibly good, or bad, time in your life. If you do not understand the health system you may not understand the roles of the professionals in it, like the midwife or doctor. For example, you may think that if you see a midwife it might mean you are not an important enough patient to see a doctor, not realising the midwife’s role is to give you the best possible care, understanding and support. If you then have a problem you may then not know where to look for help, how to ask, or what kinds of services could support you. If you are lucky enough to find the right service or professional to support them, you can face difficulties where there is a lack of communication between services. There is a lack of communication between GP surgeries and hospitals, they exist completely independently and even though they are both giving amazing care at the moment they don’t communicate with each other. If you don’t speak English, one lost letter can mean a huge level of stress, for example you may not have the information you need, or you may receive a phone call but not know who you were talking to or where they want you to go. One lady went to the GP, pharmacy and hospital every day for two weeks Bruce MacGregor, Director, Ipswich Community Media Monika Puchala, Community Champion, Ipswich Community Media 17 | Suffolk and North East Essex Integrated Care System

to try to pick up a prescription. The hospital said they had sent the information, the GP accepted they had the information, but the pharmacy said they didn’t. This sort of experience causes unnecessary stress; you have no one to talk to about the pressure you feel, wanting to take the medication you need but not being able to get it, as English is not your first language. A lack of awareness of culture and traditions can have a significant effect on care. For example, in England people have three meals, breakfast, lunch and dinner, whereas in Poland people have breakfast, dinner and a light supper, which means that if you are reliant on insulin your treatment needs to be very different. In terms of translation, Language Line is available to talk to the professional, but before you can access the doctor you need to speak to the receptionist. Language Line is not available to you at that point so you need to explain in English to them what has happened and why you need help. If you can’t explain the problem in enough detail for the receptionist to understand they will just refer you to 111, but you cannot communicate with them either. Some people assume migrants don’t want to learn English. I heard a consultant say to a pregnant lady that it was time she learned English, I was able to reply on her behalf that she is learning but needs more time. The solutions to these issues are not quick or easy. It is important to take the time to build trust and stronger relationships between health services and communities. We need to give women opportunities to understand how the partnerships within health services work, where clashes and gaps can occur and why things can go wrong. We should also stay open minded, and the best way to help build trust is for women to be able to share positive experiences with their communities. Taking a whole family approach – the benefits of Family Integrated Care Julia explained that in 2019 the report of the national Neonatal Critical Care Review identified a number of aspects of neonatal care which needed improvement, including the family experience. The review recommended employment of care co-ordinators to implement Family Integrated Care (FiCare). Tools included within the Bliss Baby Charter Accreditation and the Baby Friendly Initiative neonatal standards help us to achieve FiCare. The FiCare model comprises four foundation pillars: • Staff education and support • Parent education • The neonatal intensive care environment • Psychological wellbeing. In neonatal units babies are separated from their parents, which can have physical, psychological and emotional health impacts on both parents and baby. In FiCare parents are true partners in their baby’s care in the neonatal intensive care unit. This means parents participating directly in caregiving, and creates a collaborative relationship between parents and staff that helps to promote parent-infant interactions and sharing of information. Parents are involved in all possible aspects of care, including feeding, nappy changing, bathing, providing oral medication, tracking weight and progress. It also involves participating in decision-making and taking part in medical rounds, which increases their involvement in their baby’s care and helps to build relationships with the medical team. Parents have support and education in the care of their baby to allow them to grow into the role of care providers for their infants. Julia Cooper, Care Coordinator Team, East of England Neonatal Operational Delivery Network Thinking Differently Together | 18

The British Association of Perinatal Medicine has developed a framework for FiCare to implement the four pillars, with partnership at the heart of the model. Empowerment involves giving parents the knowledge and the skills they need to parent their child. Wellbeing provides support for families to develop a healthy dynamic. Culture is about the team supporting the family to be the best they can be. Environment involves ensuring that the surroundings and facilities are not barriers to being able to parent the baby. Partnership is about parents being true partners in care, being involved in all decision-making in all aspects of their baby. The model means a shift in perception and a changing culture. The benefits to babies of FiCare include: • Reduced mortality. • Reduced infection rates which in turn leads to reduced antibiotic usage. • Increased breastmilk feeding (including at discharge) and earlier suck feeding, and greater weight gain. • Earlier discharge, with parents feeling better prepared, and a reduced rate of readmissions to hospital. • Sustained effect on the baby’s behaviour, with improved self-regulation observed at 18-21 months (corrected age). Benefits to the family include: • Promotion of bonding, which in turn improves parental wellbeing and reduces parental anxiety. • Increased breastfeeding rates improves maternal health and financial benefits to the family. • Enhances parental confidence at discharge and has benefits for the long-term outcomes of babies and their families. Benefits to staff include: • Empowering them to lead change in their unit, which in turn contributes to happy, cohesive teams. • Greater consistency in care contributes to increased job satisfaction for staff, and greater service user satisfaction which results in fewer complaints and reduced incident reporting. “Help us to help them be the best child they can be, by enabling us to be the best parents we can be from day one.” Nadia Leake, NICU mama 19 | Suffolk and North East Essex Integrated Care System

The importance of involving partners Richard explained: as a first-time dad I experienced people asking, “How’s mum?” “How’s baby” For me, it was “Dad, make sure you look after them”, rather than asking how I was doing in this major life change. As much as dad’s need to support their family, they also need to be heard, supported and encouraged in their role. EPIC Dad started in 2017 and registered as a Community Interest Company in 2018. EPIC stands for Encourager – Provider – Instructor – Carer, and its vision is focused on ‘Restoring the Role of Fathers’ and celebrating the positive difference dads and male carers can make to families and communities. With regard to the LGBTQI+ community, Epic Dad wants to be inclusive; our specific focus is on father figures, and we can offer all who identify themselves as fathers with support in their role in the family. Supporting Men (Wellbeing Support) • EPIC Dad Mentoring (One-to-One Support) • EPIC Dad Walk and Talk (Wellbeing Walks) • EPIC Dad Wellbeing Course (5 Part Course supporting fathers and father figures in their wellbeing) • EPIC Dad Time Out (Social and Games Evening) This area of work developed a lot during the pandemic, when many dads were struggling with mental health, work and home challenges, and general uncertainty. We are able to run our groups, courses and activities from our fatherhood hub, and provide resources for them and their families. Empowering Fathers (Parenting Support) • EPIC Dad Survival Course and Survival Kit (3 Part fatherhood preparation course) • Dads Matter Course (parenting course for fathers) • EPIC Dad Fatherhood Explored Workshop (A practical session exploring the roles of a Father) Dads completing the preparation course receive a backpack of useful items for new dads including a water bottle, snack bar, a journal to write about their experiences, and leaflets. There are also useful items for when in hospital before the birth and items for the baby such as nappies, wet wipes, and a children’s book. Richard Keeble, Epic Dad CIC Thinking Differently Together | 20