Maternity Experience

#Matexp – Emotional Wellbeing – what do families really need?

15 June 2015 by Emma Sasaru / #MatExp Actions, About MatExp, Baby Loss, Birth Trauma, Environment and Facilities, Feeding, Postnatal Care, Pregnancy Complications, The #MatExp Journey, Uncategorized / Comments Off

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;

How much do you feel your pregnancy, birth and postnatal care affected your emotional wellbeing?
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 ?
What supported or helped you to protect your emotional wellbeing?
What can be done to help health care professionals be able to support families better?

Many commented on how we often under estimate the impact having a new baby has on a family. It was said that ‘adapting from working life to being at home was overwhelming’, ‘that often dads are working long hours and need support too’ and having somewhere to go to talk to others and relax was vital. Emotional support was mentioned as being a “basic need” for families.

One comment noted that ‘real life’ parenting needs to be discussed at antenatal contacts. “We are bombarded with the prefect images of parenthood, I don’t think people are prepared for the realities of parenthood – being totally exhausted but this little person still needs feeding and there is no milk in the fridge so you cant even have a coffee to wake up you”.

Another commented’ ” professionals need to understand the stresses which parents face not just with the birth, but financial, logistical etc”. What suggestions were made that would help? “By looking through the eyes of the patient, and trying to see things from their point of view”. Yes walking in another’s shoes so to speak showing empathy, and understanding helps provide support that protects the emotional wellbeing of families.

Many voiced feeling left alone, isolated and ‘fending for themselves’ after the birth of their babies and how this impacted their emotional wellbeing. Many felt afraid to voice they were struggling with motherhood and kept it to themselves worrying they be dismissed or viewed as ‘failing’.

Others voiced how important good support from health visitors, peer support and support groups was to their emotional wellbeing and not just for mom but dads too. In fact is was mentioned how important it is to ask dads how they are doing too!

Again and again support was mentioned for birth trauma and loss of a baby. Things such as professional counselling to be available as standard and peer support on wards and units. As well as health professionals knowing where to signpost families for support including local charities and national organisations.

One comment read “the single biggest thing would have been to treat us respectfully”. Very sobering.

So what were some of the actions that came out of the discussion to help with emotional wellbeing?

Maternity units to have specially trained staff to care for those that have suffered birth trauma, loss or mental health issues.
To remember that care involves emotional support not just physical.
Peer support for families on wards and in NICU.
Specialist counselling services available as part of post-natal after care and on NICU unit so families do not have to leave their babies.
Antenatal support on ‘real life’ caring for a baby, as well as how to look after their emotional wellbeing.
After birth de-briefs for sharing of experiences both good and bad to help improve care given.
Remember that dads need support too.
Health professionals to be aware of support available to families so they can signpost.
For all staff supporting families to show kindness, compassion and empathy and provide care that is patient-centred meeting individual needs.
Most of all treat families with respect. “letting mums and dads know that being good is good enough – they don’t need to be perfect”.

Emotional wellbeing is important for families, by sharing experiences, listening and working together we can help improve the maternity experience for all.

There is beauty in giving to others

Click here to add more actions

Emma Jane Sasaru

@ESasaruNHS

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#MatExp – Real or Not Real?

14 June 2015 by Florence Wilcock / #MatExp Actions, MatExp and Me, The #MatExp Journey / Comments Off

As we reach the middle of #FlamingJune I have been thinking about the week I’ve had. To be honest it has pushed my multitasking abilities to the limit: I have had a number of big events to attend or speak at, as well as the day job of being a divisional director at Kingston and a clinician seeing and caring for women – and this is before I even consider my husband and daughters.

Amongst all this I sometime wonder if #MatExp is really having an impact, or have I just got carried away.

It has been a tricky week for others too. The more people know about #MatExp and what we are trying to do the better, but this comes with pressure and also criticism.

It is hard to understand that this is an organic grassroots project with a direction and mind of its own. No one is ‘in charge’ and it is richer for it.

This was brought home to me at the London Maternity Strategic Clinical Network event held on Wednesday. The five pilot sites who had held a #MatExp ‘Whose Shoes’ workshop presented the action they had taken as a result and I was overwhelmed by the diversity of actions taken and the determination with which people had followed through in a multitude of ways.

Devolved leadership and true collaboration with women has been our hallmark from the beginning but I was bowled over to actually witness the results of all the actions gathered together in one place and to recognise how powerful the outcome of the workshops was.

At the same event we launched our ‘Maternity Experience’ film. It was a tense moment, it is so difficult when you are knee-deep in a project to step back and see it afresh and I wasn’t sure how others would find it. I so desperately wanted it to to be true to the workshops and #MatExp conversations we have had over the months.

Fortunately on the whole it seems to have rung true and be a success, which I hope will power more thinking and questioning on a daily basis of ‘why do we do it this way, what could we do instead?’

Rounding off my week I have had the small matter of conversations with the leadership of the Royal College of Obstetricians and Gynaecologists (RCOG) about how they could help, and a flying visit by Helen Bevan to Kingston on Thursday when she said ‘there was lots going on #MatExp yesterday, I got tweeted your film about 15 times!’.

It’s a roller coaster ride but I wouldn’t have it any other way. Each time I have a doubt something happens that reaffirms that however small , changes are actually happening. Just yesterday a midwife at Kingston told me her pledge from our October workshop will be completed next week. She has stuck with it through barriers and blocks and seen it to completion and that desire for action, that is what #MatExp is all about!

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Time to Act for Midwives

14 June 2015 by Helen Calvert / #MatExp Actions, Environment and Facilities, Maternity Review / Comments Off

There have been some fantastic conversations taking place on the MatExp Facebook group, with lots of ACTION threads being posted to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

One of the subjects we started to tackle early on was Birth Trauma. This was an insightful discussion about parental experiences, but it was mentioned that midwives can also be traumatised by their experiences of birth. We started a thread specifically to discuss this issue and for me it got to the heart of some of the problems facing maternity care today.

I was at a user group at Salford University in May where a group of parents discussed the midwifery curriculum with some of the lecturers. We talked about all of the things that parents want – compassionate care, informed consent, skin to skin, optimal cord clamping, breastfeeding support – the usual topics. One of the lecturers commented that they had been teaching all of these things for years, why were the same complaints and comments still coming back from parents?

I really feel that midwives’ experiences and the way that these are dealt with is one of the answers.

A comment that particularly resonated with the group was from a third year student midwife and I would like to share it here in full:

“I agree, that the trauma for me is cumulative. Often a singular ‘traumatic birth’ is easier to process as the necessity for intervention is usually clearer, staff involvement/support is higher and women/families are offered enhanced care/debrief/support. It is the ‘routine’, less critical ‘procedures’ that affect me over time. The ‘heroic’ ARM, the VEs by doctors with inadequate consent, instrumental deliveries without compassion or the ignoring of important birth wishes (OCC for example). It calls into question your very notions of love, kindness and compassion. It hurts personally to see these violations of women, often by doctors. Usually it is not the ‘act’ itself but instead the loss of autonomy and consent that causes me so much pain. I also have noticed, how frequently these things are not noticed by women, because they don’t know it could be any different. And I feel that in that alone ‘we’, the system, have let her down. It took me a very long time to establish why I found the delivery suite so challenging. Now I understand that witnessing, sometimes being part of, repeated human rights violations is of course going to be distressing. It would be to anyone. The fact that this job is integral to my sense of self, identity, world view and beliefs makes the impact even greater. But I do think that without adequate support birthworkers (midwives, doctors, doulas, etc) may become detached or choose to leave the hospital setting to protect themselves. This has been my biggest challenge throughout my training and I know will continue to be as a NQM. I believe all birthworkers need nourishing support to continue to provide compassionate care. I have received this from a community of feminist birthworkers spread across the country but whose shared values inspire, support and encourage me. Having space held for me as a student midwife by fellow birthworkers has taught me more about how to provide loving care than almost anything else.”

A retired midwife commented “I’m old hand in some respects and you basically brushed yourself down and moved forward. The difficulty occurs I think in the future as over time as you find that the coping mechanisms aren’t working as well and you exist with a high level of adrenaline running around your body; it becomes more and more challenging to cope.”

Birth workers discussed crying in the toilets whilst at work, fire-fighting from one emergency situation to another, feeling vulnerable, angry and frustrated. Cutting costs and box ticking were mentioned and a lack of compassion amongst the management system, with policies slowly eroding midwives’ scope of practice.

“As a student, I have found morale amongst midwives one of the hardest things to deal with. The majority dislike their jobs for many reasons (too many to list but management and politics play a huge part) and are unresponsive to students enthusiasm. I have even been told by mentors that they don’t like having student? This obviously has an impact on learning and emotions. When experiencing birth trauma with a midwife that shows no emotion, even after the event, it is hard for a student to deal with and can have a huge impact on students emotional/mental well being. That being said, there are some fantastic mentors. However, students leaving training due to lack of support is unacceptable.”

Immediate, short term actions:

Find out if your Trust has guidelines about supporting families AND staff after difficult births
If anyone has good guidelines from their Trust that they are able to share please let us know
Midwives at all levels to reassure one another that it is acceptable to have difficulties coping with some of the births that they witness, and to talk about coping strategies that they have found helpful.
Mindfulness classes to be offered to staff
Read The Roar Behind The Silence (and encourage colleagues and managers to read it) – many of these issues are discussed in the book and action points suggested
Use Random Acts of Kindness and Paying It Forward in your workplace to support colleagues

Long term actions:

Consideration to be given to what will replace supervision of midwives if it is to be dismantled, in terms of who midwives are going to go to for support
Explore the model of Restorative Supervision
“We need a powerhouse of strong and courageous managers, midwives and students who are able to steer midwifery towards kinder more humane care keeping in mind our goal for physically safe and emotionally satisfying outcomes for women.” (midwifery student)

“The emotional investment of midwifery takes its toll”

No need for permission to join #Flaming June – JFDI!

7 June 2015 by Florence Wilcock / #MatExp Actions, MatExp and Me, The #MatExp Journey / 1 Comment

It’s nearly a week since lighting the fuse and setting off ‪#FlamingJune with a bang. We launched our website and we are starting to see that ripple of action as a result as well as trying to draw on existing events and plans that we knew were happening in June.

It is getting people’s attention – perfect, just as we hoped! We are being quoted and used as an example, as a change platform, a campaign it’s awesome!

But in some ways we are victims of our own success we are just that bit too innovative and cutting edge so it is hard for people to understand just what we are.

We are not an organisation, we are not employed to do this, we have no funding, we have no rules or structure.

We are quite simply people. People who are like minded, people with initiative, people who see the need for change and want to enable it to happen by bring ideas together and encouraging action.

Some of us it is true are NHS employees however this work is not in our job description we are doing this in our spare time round busy day jobs and home life. Many of us are juggling this with other jobs, small children, home commitments, life… the thing that unites us is a passion and an energy to keep improving maternity services.

So if I were to define us, we are an ever growing fluid and flexible movement of people who want to enable change and improvement in maternity services.

There are no rights or wrongs, no one needs permission to join in, we are leading by default because we happened to step forward.

There is plenty more space for people to step in to help. The key message is to value and respect all views; encourage airing problems to find solutions and we will endeavour to help and support those who can and want to jump on board as best we can.

We have a lot of exciting days to come in June & beyond. Bring it on!

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Time to Act on Anxiety

4 June 2015 by Helen Calvert / #MatExp Actions, Baby Loss, Birth Trauma / 1 Comment

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” 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

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.

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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All Actions Big and Small

2 June 2015 by Leigh Kendall / #MatExp Actions, MatExp and Me, The #MatExp Journey / 1 Comment

June is our month of ACTION for the #MatExp campaign! All actions big and small are welcome and very valued.

Actions don’t need to be huge or onerous. They could be something you’re already doing. For example, my action focuses on bereavement support for parents who have lost a baby. It is an extension of my blog, and the work I am already doing as part of Hugo’s Legacy.

Your action could be as straightforward as telling everyone you know about #MatExp, and encouraging them to get involved.

If you’re a health professional, it could be something as simple as making sure you always say #hellomynameis. Or, your action could be doing something differently based on feedback from a woman in one of the #MatExp social media channels.

It doesn’t really matter what your action is. Your action should just be something that is relevant to YOU. It should also be something that feels manageable and achievable.

We all have busy lives. Like with any change, to be sustainable it needs to be part of your life, not in addition to it.

You may have seen some comments from folk saying they want to do more, and that’s brilliant. But please remember that is pressure they are putting on THEMSELVES. We think it would be brilliant if everyone made an action, but there is no pressure from us.

There is also no pressure to do the action during June. #MatExp has already achieved so much, and generated so much activity since its official launch at NHS Change Day in March 2015, we have designated want to maintain the momentum. Dependent on your chosen action, it might be something you will do every day, or it might be something it is difficult to put into action for some time yet. Throwing a few clichés around, Rome wasn’t built in a day, and remember how you eat an elephant: in small chunks!

#MatExp is a grassroots movement – that is, it’s led by us all. No one is ‘in charge’ as such. That means you don’t need to ask anyone for permission to do an action (caveat: dependent on your action, of course: you might want to get permission from someone in your organisation if your action involves something like moving a ward!).

Do share with the #MatExp community what your actions are, or about the actions you’re thinking of making, though. That’s not just because we’re a nosey bunch: by sharing our thoughts, we can collaborate by contributing different ideas from our own experiences and expertise. By doing that we can help each other out, and potentially make an even greater impact.

We have seen from our discussions on Twitter and in the Facebook group that discussions around actions create all sorts of lightbulb and penny drop moments.

You can:

Tweet using the #MatExp hashtag
Join or start a conversation in the #MatExp Facebook group
If you have a blog, you could write a post about the action you are thinking of making, or have made, and add it to our linky
If you don’t have a blog, you can tell us about your existing or proposed action through this contact form
You can also share your action by taking an action selfie and sharing it on social media. There is a template you can print out on this page.

Here’s my selfie!

Together we are stronger.

There are no right or wrong answers!

Don’t worry if your action seems ‘too small’. No action can be too small. There are no points to be scored, no prizes to be given – and that’s not just because this campaign is run on zero budget – scores are not what #MatExp is about. Making an action that impacts on even one person is amazing, valued, and very worthwhile.

You may have heard of the starfish story:

We hope that makes sense. If you need any guidance or would like to do some brainstorming or have ideas you’d like to share, please do throw it out to the #MatExp community – on Twitter, Facebook, or by looking at some of the ideas on this site. The principle that underpins #MatExp is identifying and sharing best practice across the nation’s maternity services.

There is no false modesty involved when we say we are making it up as we go along – we really are. And that means YOU can help influence the directions #MatExp takes.

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#MatExp – Lights, Camera, Action!

2 June 2015 by Helen Calvert / #MatExp Actions, The #MatExp Journey / Comments Off

It was on 12^th May that Leigh Kendall and Helen Calvert thought about starting a Facebook group for the #MatExp campaign. JFDI and all that, the group was started two days later. Three weeks in and we’re at 450 members. You’ve got to love this campaign, nothing happens slowly!

The group is administrated by Emma Jane Sasaru, Helen Calvert, Leigh Kendall and Susanne Remic, and is the Facebook outlet for a campaign that has already gained huge momentum on Twitter. Florence Wilcock, the obstetrician at Kingston Hospital who started the campaign, has always wanted it to be focused on ACTION and this theme is central to the group. Each day a member of the admin team starts a thread on a chosen topic with questions/talking points and a request for actions that families and birth professionals can take to improve maternity experience in this area. We ask that actions are S.M.A.R.T.

Florence and Gill Phillips have a Month of Action planned for June, so we had originally hoped to do a blog post at the start of June detailing the actions put forward so far by the Facebook group and asking that people get involved. The snag is there have been so many fabulous actions put forward already on a number of important topics. The topics are being chosen in alphabetical order as a nod towards the #MatExp ABC that provided so much impetus on Twitter, and we are so far only on “H” – already the actions are numerous and thought provoking.

So we have quickly realised that it might be better for each of the admin team members to do individual blog posts on the topics that they have introduced to the group. These posts will start to come through soon, but for now we still wanted to give you a flavour of the suggestions and we hope that you will join us on Facebook or Twitter (or both) to get involved.

ACTION!

The actions that have been suggested on each of the threads can be divided into two categories:

Immediate – just get up and do it actions that anybody can take, here and now. These tend to be small things but they can still have an impact.
Long-term – group actions that require input and buy-in from different places and will probably require campaigns of their own.

Both are very important to the campaign. There are big issues that need to be addressed in maternity care and the NHS Maternity Review is looking at these right now. We are hoping to work with the review panel and to share our ideas with them. But we also need to remember that simple acts of kindness can change the experience of anyone with whom we come into contact. Sharing a piece of information could send someone down a different path. Signposting to a service could make the difference for that individual. No one needs to sit back and wait for a bandwagon to jump on. We can all of us get up and act today.

So what has been suggested so far? Here is a snapshot of some of the topics we have discussed:

A is for Anxiety

Immediate actions –

Anxious mums to use hypnotherapy techniques in pregnancy
Be honest about your anxieties and find out as much as you can on how to manage them
Midwives please ask mums about their mental health throughout their pregnancy, not just on booking in; anxious mums to look into mindfulness techniques

Long-term actions –

All health visitors need training in identifying and supporting pre and postnatal anxiety
Subsidised doula provision for anxious families
Continuity of care for anxious families
Refer anxiety sufferers to specialist mental health support

B is for Bereavement

Immediate actions –

The most important immediate action can be done by anyone, anywhere, anytime – acknowledge the baby the parents have lost. If you know the baby’s name, use it. If you don’t know the baby’s name, ask. Take the parents’ lead on whether or not they want to talk about their loss. Try not to worry about saying the ‘wrong’ thing. The worst thing you can do is to skirt around the subject, or ignore it completely. To do so insulting and upsetting to bereaved parents.

Long-term actions –

Clear, concise, sensible, and up-to-date information to be provided to bereaved parents when they leave the hospital after the death of their baby. Parents need reassurance about the emotions they are likely to feel, and a few pointers about how to navigate grief, especially during the raw early weeks. The information also needs to clearly state how the parents can access appropriate support as and when they are ready.
Access to counselling support. Too many bereaved parents have had to fight for the counselling and psychological support they need – or have gone without. Some hospitals do offer counselling services: hospitals need to make clear to parents that this is available, and how to access it. Funding issues mean that not every area is able to provide these services, but charities thankfully do exist to fill the gap. Hospital and GP practice staff need to know what support is available locally so they can signpost parents appropriately, or where appropriate make referrals for them. Leaving bereaved parents to source their own support at a time when they are least able to have the tenacity to deal with ‘the system’ is unacceptable.
Training in bereavement care for health professionals. Surprisingly, many don’t receive this as standard practice. The vast majority of health professionals are caring individuals, but a lack of appropriate training means many are unsure about how best to deal with bereavement, which may lead them to saying things that are less than helpful to parents. What is said to parents at this sad time stays with them forever, so the importance of this training cannot be underestimated. This training should be extended to all staff involved with maternity/NNUs (including admin, housekeeping et al) to help prevent unnecessary upsets.
Debrief/support to care for the needs of maternity, obstetric and NNU staff after the death of a baby. These staff are deeply affected by the loss of a baby in their care.

B is for Birth Trauma (families)

Immediate actions –

Use of language when discussing birth trauma with families- lots of women have felt their feelings were dismissed, or that they were being ‘silly’. Women also felt that they had failed. Language in notes also very important.
Immediate debrief after a traumatic birth; women felt that they were discharged and sent home without having the chance to talk through events.
Communication- tell women and their families what is happening and why.

Long-term actions –

Birth trauma support groups for women to access after a traumatic birth.
Birth reflections and birth trauma counsellors to be accessed for as long as women and their families need them. Trained counsellors to support, and health visitors to be able to signpost the necessary services too.
Better recognition of PTSD following birth trauma and better support for dads too.
Emotional support for women in subsequent pregnancies.
Ensure that women know how to access appropriate services following birth trauma.

B is for Birth Trauma (midwives)

Immediate actions –

Make sure your colleagues know that they don’t have to “cope” – it’s okay to admit that they have been traumatised by a particular birth experience
Ask if your Trust has guidelines in place for supporting staff after a difficult birth.

Long-term actions –

Stringent debrief sessions put in place for each instrumental birth and any birth that is not straightforward
Tackle trauma that accumulates from seeing the same things again and again – e.g. vaginal exams with inadequate consent, instrumental deliveries without compassion, loss of autonomy and consent.

C is for C-sections

Immediate actions –

Skin to skin in theatre.
Ensure that women are supported in their decision to have a c-section and help them to write a birth plan to feel empowered during surgery. Discussion of gentle c-section options.
Help women to find comfortable positions to breastfeed.

Long-term actions –

Identify reasons for c-sections and look to see where these can be reduced.
Educate women during subsequent pregnancies, ensuring that up to date information is given with regards to VBAC. Ensure access to VBAC clinic is given.
Better patient leaflets with more information on what happens during surgery and what recovery is like.
Debrief from surgeon on how the c-section went and how subsequent pregnancies are likely to be affected.
Better support for women after an emergency c-section.
Provide emotional support and/ or counselling after a c-section for women who require it.

C is for Complications

Immediate actions –

Communication was a common theme in the responses in this thread. Women – especially those who experienced complications around the time of the birth of their baby – wanted professionals to explain what was happening. Not knowing what was happening, and why, added to these women’s anxiety. Women (and their birth partners) need to be told as much as is appropriate at the time what is happening and why, in simple language.
Health professionals need to remember that consent is still vital!
Explain everything – as a health professional, certain things that you consider routine may be daunting or scary to a woman in your care. Make sure you explain everything that is happening, and be patient if they need the information to be repeated – it can often be difficult to take things in when you are in a crisis situation.

Long-term actions –

Information: there is a lot of difference in the quality and content of information pregnant women receive from hospitals and community midwives. It can create confusion, especially combined with the wealth of information available from charities and the internet. While the internet can’t be controlled of course, it would make sense for hospitals nationwide to have consistent leaflets from a central source, with the ability to personalise information as appropriate.
Connected to this point, knowing how much information to tell women about complications is difficult. We want them to know enough so they can recognise symptoms if they appear, but not so much they are stressed and scared. The balance is hard to strike. To compound this, there are women who do not attend antenatal appointments so are unable to receive this information.
For A&E staff to be better aware of pregnancy complications, and to consult maternity/obstetrics staff when needed.
For women to be proactively contacted when pathology (blood/urine etc) tests come back with warning signs, rather than relying on the woman to remember to phone for results.

C is for Continuity of Care

Immediate actions –

Managers to talk to the independent midwives and social enterprise midwives who are knowledgeable in how case-loading can work
Look at the Streatham Valley midwifery team in London for a working model
If a woman is not receiving continuity of care, please ensure as a birth professional that you read her notes thoroughly and write good notes for the next person she sees.

Long-term actions –

We need strong leaders at the helm of Trusts who understand how to lead midwives towards the implementation of continuity of care
Join up with the RCM Better Births Campaign
We need more midwives
Look into personalised budgets where the NHS would allocate women funding to choose the service they want.

D is for Dads (and Partners)

Immediate actions –

Birth professionals please keep Dads and Partners informed during the birth
If Dads and Partners are not allowed on the ward at specific times please ensure the Bounty rep is not allowed on either
Recognise that Dads can suffer birth trauma too.

Long-term actions –

Keep families together, find ways to allow Dads and Partners to stay in hospital
More paternal leave for fathers of premature babies – 2 weeks at birth and 2 weeks at discharge (the same for sick term babies too).

E is for Emotional Wellbeing

Immediate actions –

Kindness, dignity and compassionate patient-centred care.
Accurate information to support informed choice for families.
Support for traumatic births, families that have a baby on NICU and paediatric wards.
Good communication between staff, wards and with parents.
Include partners and realise they need support too.

Long-term actions –

More support services including peer support groups.
Healthcare professionals aware of support services and therapies to signpost families to.
Antenatal education to help parents prepare for parenthood and the impact birth has emotionally.
Training for midwives and health visitors on all mental health disorders and how to spot/support.
Specialist perinatal counselling available nationally.
Continuation of care for families especially if previous trauma or mental health disorders.
Peer support on NICU units to provide emotional support reduce risks of PTSD.

And before we started the ABC we already had a hot topic that grabbed our participants’ interest:

Tongue Tie

Long-term actions –

Tongue tie assessment needs to feature in doctor and health visitor training
Better postnatal care – need skilled assessment of baby, mother and feeding rather than families being sent home ASAP
Tongue tie assessment to become a part of the newborn checks.

What would you add? What will you do? What have you already done? Come and join the conversation – and join in the ACTION! #MatExp #FlamingJune

Emma, Helen, Leigh & Susanne on behalf of #MatExp.

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The #MatExp month of ACTION begins today. Why women everywhere need the Maternity Review Team to engage!

1 June 2015 by Gill Phillips / About MatExp, Continuity of Care, Informed Choice, Language, Maternity Review, The #MatExp Journey, Uncategorized / Comments Off

June is not going to be dull…! For me personally, this is a big week – I am looking forward to speaking at the NHS Confederation Annual Conference on Wednesday. The session I am involved in, chaired by Dr. Mark Newbold, is about urgent care of older people. The emphasis of my contribution is around prevention, holistic approaches and joined-up systems, ensuring that life is not over-medicalised – the simple things that make life worth living.

@WhoseShoes Not a fan of capitals usually as you know but forgot v imp message DO SOMETHING ABOUT (scandal of) NHS CONTINUING HEALTH CARE.

— Pippa Kelly (@piponthecommons) May 26, 2015

@WhoseShoes @drmarknewbold @ShazzaHudson @piponthecommons – exactly why you are involved 🙂

— Rob Webster 💙 (@NHS_RobW) May 27, 2015

Mum, known on Twitter as @Gills_Mum, is extremely interested in my talk and threatening to write a blog of her own…

Preparing my presentation brings home yet again the parallels and key themes across all areas of my work. Hardly surprisingly really as we are all people; aspirations, hopes and fears and the desire to have control over our own lives do not suddenly change just because we get older.

Today starts the month with a bang.

Our #MatExp campaign, to improve the maternity experience of women everywhere, goes up a gear.

For anyone who has been twiddling their thumbs and wondering what to do with themselves since the end of the #MatExp alphabet (yes, we know who you are!), you will be delighted to know that June is a month of action!

@FWmaternitykhft how does it work?? Really want to get involved in #MatExp 💥

— Clare Helm (@ClareHelm2) May 31, 2015

Are you getting ready? The #MatExp month of action starts TOMORROW! What will YOUR action be? #FlamingJune pic.twitter.com/RKX0tn6ITk

— Leigh Kendall FRSA 💙 (@LeighAKendall) May 31, 2015

@FWmaternitykhft I can't wait. I've missed the #MatExp. My mornings haven't been the same since 🔠

— Michelle Quashie (@QuashieMichelle) May 31, 2015

@QuashieMichelle @FWmaternitykhft nor me! Ready for #FlamingJune #MatExp

— Dr Jenny Hall (@hallmum5) May 31, 2015

#MatExp #FlamingJune – we are just waiting for the weather to catch up … although perhaps it is just as well it is a bit cool outside or the energy burning in this remarkable grassroots campaign might just start some forest fires!

The Maternity Experience change platform launches! http://t.co/CY9Cq1He1E Sharing great practice across Britain's maternity services #MatExp

— Helen Bevan (@HelenBevan) June 1, 2015

Sheena Byrom is an extraordinary woman. As her action for June, she is posting blogs from individuals who have information to offer to the new team set up to conduct a national review of maternity services in England, led by Baroness Julia Cumberlege. We all feel passionately that this new review team needs to engage with the action-focused, inclusive work of what has now become an unstoppable social movement for positive change.

And so it is a huge honour that Sheena invited Florence Wilcock and me, as the initiators of the #MatExp campaign, to write the opening blog and tell everyone what has been happening and why is it so important for these links to be made.

Sheena is publishing our blog today on her site. But for ease you can also read it below. We are all working together in a very strong collaboration and taking the view that the more different channels we can use to spread the word and involve more and more people, the better!

OUR GUEST BLOG FOR SHEENA BYROM IS REPRODUCED BELOW…

We would like to kick off Sheena’s June blogging series with a strong call for the Maternity Review Team to engage with our fabulous #MatExp grassroots community. We need to build on all the amazing work that has been happening over recent months through this passionate, inclusive group.

So what is #MatExp and how did it come about?

A lot has been written about this already – for example, Florence’s ‘in my shoes blog’.

Florence and Gill made this short video when, due to the phenomenal grassroots energy it had inspired, #MatExp was included as a major campaign in NHS Change Day, 2015.

Graphic record from our #MatExp Whose Shoes? workshop, held at Kingston Hospital. New Possibilities are the graphic artists.[/caption]

Inevitably the themes are similar between the different sessions but with a strong local emphasis and most importantly local ownership, energy and leadership.

On Gill’s original blog there are LOADS of scrolling photos at this point showing #MatExp #Whose Shoes workshops and the wider campaign in action – take a look!

It would be easy for the NHS Change Day campaigns to lose momentum after the big day itself, (11 March). #MatExp has done the opposite, continuing to build and bring in new people and actions. #MatExp #now has 110 million Twitter impressions. We have just finished the ‘#MatExp daily alphabet’, a brilliantly simple idea to get people posting each day key issues related to the relevant letter of the alphabet.

This has directly led into the month of action starting today, 1 June!

Helen Calvert set up and ran a survey of health care professionals. She had 150 responses within about 10 days and analysed and reported the results – an extraordinary contribution.

We have a vibrant Facebook group (please apply to join – initiated by fab Helen Calvert @heartmummy) and the brand new website (LAUNCHED TODAY! – huge thanks in particular to Leigh Kendall @leighakendall) set up by the #MatExp team of mums who are incredibly focused, working long hours – all as volunteers. We are all absolutely determined to keep working together to improve maternity experience for women everywhere.

Gill Phillips and Florence Wilcock

There will be LOADS of ideas to help you…
So please get involved.

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Ways in which my c-sections make me amazing

31 May 2015 by Susanne Remic / Pregnancy Complications / Comments Off

I’ve had 4 c-sections (2 emergency, 1 elective and 1 planned due to medical reasons) and time and again I find myself making excuses, or defending myself when the topic of birth comes up. I’ve also spoken to many women who feel they failed, or did not give birth because they had a c-section. I’ve come to the point now where I want to celebrate the way that my babies came into the world, and show other women that they did NOT take the easy way out. A c-section is not the easy option and there is no need to feel ashamed either.

If you’ve had a c-section, I hope you know that you are amazing.

I’ve had four c-sections. And until now, I have always been- if not ashamed- a little defensive over them.

But baby was in distress, so the section saved my life.

My son WOULD have died without a section.

It was the easiest decision for me after two traumatic failed labours and emergency sections.

The doctors said it was the safest and only way my baby could be delivered alive.

I’ve always been a little anxious when meeting new mums and the conversation turns to the birth. I’ve always assumed that there was something wrong with my body. Something wrong with me. I failed. I didn’t do what I was supposed to do.

But I’m tired of defending myself. I’m tired of feeling like I never really gave birth. So what if my baby came out on the operating table? I might not have given birth in the conventional way, but I gave life just the same. Who cares how the babies arrived?

Ok, so I care. I do. I really care. I care about the fact that my very first experience of childbirth was terrifying. I was ignored and laughed at. I was dismissed. I was given drugs and injections and examinations that did not help me. My baby was taken from my body not just once, but for a second time too. I was left in pain. I was taken to the brink of death and my baby almost died. I was sent to sleep while surgical hands reached inside to find my blue baby and bring him out into the world. I was not there. And I care about that. I care so much.

And because I care, I want to make it clear that those first two birth experiences make me amazing. I laboured for hours each time. Alone. Without the support of a midwife to hold my hand. Without the knowledge that I was a strong, capable woman. Without power. I laboured despite myself, for hours, with no pain relief. And just when I thought I could take no more, I was taken for major surgery. The mask over my face and the knife to skin just moments later.

And if you know what it is like to labour so intensely, with the sole purpose of bringing your baby into the world, only to realise that you will need to see that happen in an operating theatre… then you will know that I am amazing.

And if you know what it is like to labour so intensely a second time, with the desperate need to bring your baby into the world otherwise he might die, only for the world to go black and to wake up with a baby by your side… then you will know that I am amazing.

And if you know what it’s like to move your battered body a few inches across the bed, to gingerly ‘swing’ your legs around so that your feet brush the floor, to step lightly onto the ground for the first time since ‘it’ happened… then you will know that I am amazing.

To stand in the hospital shower weeping in pain each time the water jets strike the cannula in your battered hand; cursing that cannula because you didn’t want to be there, in that shower, in pain, not again. To wince in pain with each step you take. To choose to spend the night sitting up in a chair rather than to lie down in a bed because it is slightly less painful to do so. To need a cushion so that you can laugh. To still hold on to the belief that your body might make it next time.

If you know what that is like, you will know that I am amazing.

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Life after birth trauma

31 May 2015 by Susanne Remic / Birth Trauma / Comments Off

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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Today starts the month with a bang.

There will be LOADS of ideas to help you… So please get involved.

There will be LOADS of ideas to help you…
So please get involved.