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The cycle of maltreatment: How can we best support those at risk of having their baby removed at birth?

Applications for babies to be taken in to care at birth are at a national high. This results in significantly impaired life outcomes for the birthing community and their babies. So what barriers and facilitators are at play here? We have produced the following review of the literature published in @BJMidwifery to uncover therapeutic mechanisms and interventions to support those at risk of having their baby removed from them at birth.

BJM lit review

Tantawi-Basra, T., & Pezaro, S. (2020). Supporting childbearing women who are at risk of having their baby removed at birth. British Journal of Midwifery28(6), 378-387.

white bear amirugumi knitted doll

What did we find?

Barriers in supporting childbearing women who are at risk of having their baby removed at birth include:

  • Social narratives – Do these set women up to fail?
  • The paradox of help-seeking, fear and stigma – Women avoiding seeking help due to a fear of services
  • Inequalities in ethnic minority groups
  • Adverse childhood events (ACEs) and the cycle of maltreatment

Facilitators in supporting childbearing women who are at risk of having their baby removed at birth include:

  • Women’s capacity for change and self-esteem
  • Childbearing becoming a motivator for change
  • Mutual and realistic goal setting
  • The development of strong professional relationships
  • Early and sustained interventions

Uniquely, using the themes presented within this review, we have been
able to model the cycle of maltreatment which needs to be broken in Figure 1.

Cycle of Maltreatment model

As this review only yielded eight studies in total, further research could usefully inform a richer provision of research inspired teaching and training in this area.

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

 

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1 in 20 pregnancies affected by hypermobile #EhlersDanlosSyndrome & Hypermobility Spectrum Disorders

If you’re interested in childbearing with hypermobile #EhlersDanlos syndrome and Hypermobility Spectrum Disorders our new article is out now…

👉 Understanding hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders in the context of childbearing: An international qualitative study

Co-authors include Gemma Pearce & Emma Reinhold 🙌🏻

🎓💓

Hypermobile #EhlersDanlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) have profound and life-threatening consequences in childbearing, and it is now estimated that hEDS/HSD affect 6 million (4.6%) pregnancies globally per year..rounded up, this equates to almost 1 in 20 pregnancies!

 

grayscale photo of woman wearing ring

What did participants describe?

  • A worsening of symptoms during pregnancy
  • Postnatal complications
  • Ineffective anaesthesia
  • Long latent phases of labour quickly developing into rapidly progressing active labours and births (precipitate labour/precipitate birth)
  • Maternity staff panicked by unexpected outcomes
  • Healthcare professionals  lacking  knowledge and understanding
  • Poor maternity care resulting in a disengagement from services
  • Birth Trauma
  • Stress
  • Anxiety
  • An avoidance of future childbearing
  • Difficulties in holding, caring for, bonding with and breastfeeding their babies

Image may contain: text that says "Understanding hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders in the context of childbearing: An international qualitative study"

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The blog page for this work can be accessed here

How can you help?

  • maternity tool has been co-create to support both professionals and pregnant people in decision making. It is freely available for download and wider use

download maternity tool

hEDSTogether.com is also available to keep everyone up to date with this work via @hEDStogether

If you are using this tool to create an impact in the world, please tell us about it via the contact pages hosted at hEDSTogether.com.

Thanks to everyone who participated in and supported this research!…Let’s keep putting our #hEDSTogether via research!

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

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New Educational Tools Launched to Support Childbearing with Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders

Lactation Conference

On the 5th of May (International Day of the Midwife – #IDM2020) 2020 – The year of the nurse and the midwife, the @hEDStogether team launched new educational tools to support childbearing with hypermobile Ehlers Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD). Co-incidentally, May is also Ehlers Danlos Syndromes and Hypermobility Spectrum Disorders awareness month. You can view the online launch of these tools along with our other @GOLDMidwifery presentations here at the GOLD Online Education Midwifery Conference 2019/2020.

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Citation: Pezaro, S., Pearce, G., & Magee, P. (2020). New Educational Tools to Support Childbearing With hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders. GOLD Online Midwifery Conference. May 5th.https://www.goldlearning.com/ce-library/all-lectures/new-educational-tools-detail

The final tools comprised:

  • An i-learn module launched by the Royal College of Midwives to their members (search under the letter ‘H’ for hypermobility in the online library)
  • maternity tool freely available for download and wider use
  • An infomercial to raise awareness and mobilise knowledge in relation childbearing with hEDS/HSD

download maternity tool

We were also able to launch our own website – hEDSTogether.com and keep everyone up to date with the project via @hEDStogether

We have made these tools freely available where possible. You can visit the project page to learn moreIf you are using them to create an impact in the world, please tell us about it via the contact pages hosted at hEDSTogether.com.

Useful hashtags to follow on this topic include:

#EDSmaternity

 #hEDStogether 

#EhlersDanlosSyndrome

#myEDSchallenge

#myHSDchallenge

#EDSAwarenessMonth

#raisingawarenesstogether

Thanks to everyone who joined us for the launch and co-created these tools in partnership with us!…Let’s keep putting our #hEDSTogether via research!

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

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Midwives experience domestic abuse too…so how can they be supported in the workplace?

On Thursday October 4th 2018, The Royal College of Midwives (RCM) launched a report entitled ‘Safe Places? Workplace Support for those Experiencing Domestic Abuse’ at its Annual Conference in Manchester Central.

love shouldn't hurt-printed on back of woman

I was privileged to be asked to perform and write up the analysis for this report. The findings truly moved me. If you know my work at all, you will know that it is heavily focused upon securing the psychological wellbeing of midwives. This is because I do not believe that excellence in maternity care can be delivered to mothers and babies without the provision of effective support for midwives.

Findings here revealed that some midwives trained to recognise domestic abuse and support women, were sometimes not recognising that they themselves are victims of domestic abuse.

“I was allowed to stay overnight on my delivery suite to avoid going home to my abusive partner”

“I was made to feel I was a nuisance, constantly asking me and contacting me, pressurizing me in to coming back to work. I gave in and did but I was soon off again as I still wasn’t well, and I then left midwifery because I didn’t want to be dismissed. I didn’t receive any support that was effective for me”

“I have and was been treated very badly by my place of work, absolutely no support or care and compassion”

“I was given a specific senior midwife who I could go to for support, to discuss things at times when home was particularly bad and to deal with any sickness absence – helpful as one person knew what was going on and I could be truthful, especially about the reasons for sickness absence sometimes”

“All staff should be asked about domestic abuse or violence on a regular basis”

“Police and social services were unhelpful, and no support provided. Neither I nor my children were offered counselling or directed to appropriate services despite asking several times for help. One police officer even commented that due to my ethnicity I could handle the situation myself.”

person holding white printer paper

Based on the findings the RCM has put forward the following evidence-based recommendations. These will enable maternity service managers and NHS Trusts/Boards to support staff experiencing domestic abuse more effectively.

  • All NHS Trusts/Health Boards should develop specific policies to support who are victims of domestic abuse, aligned to existing guidance from the NHS Staff Council developed in 2017.
  • NHS Trusts/Health Boards should provide and publicise confidential domestic abuse support services for affected staff, including access to IDVAs, external counselling and legal services as appropriate.
  • NHS Trusts/Health Boards should ensure that all managers and supervisors are trained on domestic abuse issues, so that they can recognise signs of domestic abuse in their staff and confidently undertake their safeguarding obligations.
  •  NHS Trusts/Health Boards should ensure that staff at all levels are trained on domestic abuse issues and made aware of relevant workplace policies as part of their induction programme and continuous updating and are made aware of support services.

It was a pleasure to work with esteemed colleagues at the RCM to put this report together. Midwives and maternity support workers are a highly valued workforce whom we rely on to provide optimal care for mothers and babies. It is our sincere hope that this report will enable maternity service managers and NHS Trusts/Boards to support staff experiencing domestic abuse more effectively.

“Thank you to all of the midwives and maternity support workers who took part in this survey. The wellbeing of maternity staff is intrinsically linked with the safety and quality of maternity services. Your thoughts, feelings and experiences have helped us to arrive at a deeper understanding of the resources required to support those experiencing domestic abuse.”

woman carrying newborn baby

If you would like to follow the progress of work going forward..

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

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How does patient and public involvement work in research? An example exploring midwives’ workplace wellbeing.

Patient and public involvement or #PPI is defined by INVOLVE (part of, and funded by, the National Institute for Health Research) as: 

“Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.”

three person pointing the silver laptop computer

In our latest publication, we explain how patient and public involvement works in maternity service research. Here, we asked childbearing women about their experiences in relation to the workplace wellbeing of midwives. We also asked them how they felt about new research looking to create and test an online intervention designed to support midwives. We did this via a discussion group, where participants were offered refreshments and remuneration for their time. Our aim was to answer the following questions:

  1. What are the perceptions of new mothers in relation to the barriers to receiving high quality maternity care?
  2. What are the perceptions of new mothers in relation to the psychological wellbeing of midwives working in maternity services?
  3. What are the perceptions of new mothers in relation to a research proposal outlining the development and evaluation of an online intervention designed to support midwives in work-related psychological distress?

These PPI activities helped us as researchers to do the following:

  • Better understand this research problem from the perspectives of new mothers
  • Validate the direction of future research plans
  • Explore new areas for data collection based on what really mattered to mothers and their babies
  • Improve upon the design of the proposed online intervention based on what really mattered to mothers and babies.

You can read our full methodology via the linked citation below:

Pezaro, Sally, Gemma Pearce, and Elizabeth Bailey. “Childbearing women’s experiences of midwives’ workplace distress: Patient and public involvement.” British Journal of Midwifery 26.10 (2018): 659-669.

This article was launched in the October edition of the British Journal of Midwifery at the Royal College of Midwives annual conference in 2018 .

white and black Together We Create graffiti wall decor

Put simply, the findings in relation to what participants said were analysed thematically and turned into meaningful insights or ‘PPI coutcomes’. In this sense, we used a co-design approach to inform the direction of new research. How did this work exactly? See figure below.

Figure 1. Overall findings

Initially, we considered that it may have been useful to include midwives in PPI activities, as they were to be the intended recipients of the intervention proposed. However, INVOLVE briefing notes state that:

“When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.”

A such, we could not include midwives in these PPI activities due to them having a ‘professional role in health and social care services’. Nevertheless, as midwives were the intended end users and direct beneficiary of the intervention proposed, we argued that they should “not necessarily be excluded from PPI activities simply because they treat patients”. This debate lends itself to further academic discussion and we welcome ideas on this going forward.

two person standing on gray tile paving

Both national and international strategies and frameworks relating to healthcare services tend to focus on putting the care and safety of patients first , yet these findings suggest that to deliver the best care to new mothers effectively, the care of the midwife must equally be prioritised. As such, we now intend to seek further funding to continue this work and secure excellence in maternity care.

If you would like to follow the progress of work going forward..

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

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19 Things That Show Workplace Compassion for Healthcare Staff

We are all well aware of how the wellbeing of healthcare staff can affect the quality and safety of care. I have also talked at length about the wellbeing of health care staff and the theories surrounding work-related psychological distress. But do we really have any concrete idea of what shows workplace compassion for healthcare staff?

My research published in collaboration with Dr. Wendy Clyne, Dr. Karen Deeny and Dr. Rosie Kneafsey asked Twitter users to contribute their views about what activities, actions, policies, philosophies or approaches demonstrate workplace compassion in healthcare using the hashtag #ShowsWorkplaceCompassion. It can be cited as follows:

Clyne W, Pezaro S, Deeny K, Kneafsey R. Using Social Media to Generate and Collect Primary Data: The #ShowsWorkplaceCompassion Twitter Research Campaign. JMIR Public Health Surveill 2018;4(2):e41. DOI: 10.2196/publichealth.7686. PMID: 29685866

Image result for compassion

The results of this study outlined 19 things or ‘Themes’ in relation to what shows workplace compassion for healthcare staff as follows…

  Leadership and Management
1 Embedded organizational culture of caring for one another
2 Speaking openly to learn from mistakes
3 No blame/no bullying management
4 Inspiring leaders and collective leadership
5 Financial investment in staff
6 Recognize humanity and diversity
  Values and Culture
7 Common purpose in a team
8 Feeling valued
9 Being heard
10 Enjoying work
11 Being Engaged at work
12 Use of caring language
  Personalized Policies and Procedures
13 Recognition of the emotional and physical impact of healthcare work
14 Recognition of non-work personal context
15 Work/life balance is respected
16 Respecting the right to breaks
17 Being treated well when unwell
  Activities and Actions
18 Small gestures of kindness
19 Provision of emotional support

How will you implement these things within your healthcare workplace? I would love to hear your thoughts on this…

If you would like to follow the progress of my work going forward..

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

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How to publish your PhD thesis in 6 easy steps

Whilst I am sure that there are many reputable companies who will publish your thesis out there, I wanted to share with you all how I published mine.

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First of all, I believe that if you have a PhD then your work must be adding some original knowledge to the world. That means that your work is of value, and should therefore be published and disseminated widely. This is also true for students, whose work is of great value to the academic community.

See my post here about ‘Why Midwifery and Nursing Students Should Publish their Work and How’

But here, I wanted to map out one way to publish your thesis. It is the way I published mine.

Step one…

Publish background literature reviews to outline how you arrived at your research questions. Much of this work will summarize the first chapters of your thesis. It will also help you refine your ideas if you publish as you write.

My initial chapters were published as follows:

Pezaro, S The midwifery workforce:  A global picture of psychological distress – Article inMidwives: Official journal of the Royal College of Midwives (2016): 19:33

Pezaro S Addressing psychological distress in midwives. Nursing Times (2016): 112: 8, 22-23.

Pezaro, S., Clyne, W., Turner, A., Fulton, E. A., & Gerada, C. (2015). ‘Midwives overboard! ‘Inside their hearts are breaking, their makeup may be flaking but their smile still stays on. Women and Birth 29.3 (2016): e59-e66.

Step two…

Publish your ideas around the theories used in your work.

I did this by publishing a blog on theories of work-related stress. I also published a paper exploring the ethical considerations of what I was trying to do entitled ‘Confidentiality, anonymity and amnesty for midwives in distress seeking online support – Ethical?’. Opening this up for discussion meant that my thesis was much stronger overall.

Step three…

Publish your methods via research protocols.

Not only does this mean that you have claimed the idea for yourself in the academic world, but you also then get the benefit of a wider peer review of your work. I published the protocol of my Delphi study as follows:

Pezaro, S, Clyne, W (2015) Achieving Consensus in the Development of an Online Intervention Designed to Effectively Support Midwives in Work-Related Psychological Distress: Protocol for a Delphi Study. JMIR Res Protoc 2015 (Sep 04); 4(3):e107

Step four…

Publish each chapter of your work as you go.

Again, this gives your work added peer review in the process of developing your thesis. I published the two largest pieces of research in my thesis as follows:

Pezaro, S, Clyne, W and Fulton, E.A  “A systematic mixed-methods review of interventions, outcomes and experiences for midwives and student midwives in work-related psychological distress.” Midwifery (2017). DOI: http://dx.doi.org/10.1016/j.midw.2017.04.003

Pezaro, S and Clyne, W “Achieving Consensus for the Design and Delivery of an Online Intervention to Support Midwives in Work-Related Psychological Distress: Results From a Delphi Study.” JMIR Mental Health3.3 (2016).

Step five…

Publish summaries of your work for different audiences

Once you begin to pull together your entire thesis, you will begin to discuss the findings and arrive at certain conclusions. You can summarise these in a series of blogs and papers as you go. I published the following summary papers to reach both national and international audiences.

Pezaro, S (2018) Securing The Evidence And Theory-Based Design Of An Online Intervention Designed To Support Midwives In Work-Related Psychological Distress (Special Theme on Women in eHealth). Journal of the International Society for Telemedicine and eHealth. Vol 6, e8. 1-12.

Pezaro, S “The case for developing an online intervention to support midwives in work-related psychological distress.” British Journal of Midwifery 24.11 (2016): 799-805.

Step six…

Use info graphics to map out key points in your thesis

Once complete, your thesis will be published in full. Mine can be accessed here via the British Library and via Coventry University’s open collections. But it’s a mighty big document. Therefore, I produced the following infographic to map out my PhD journey for those looking for a shorter, yet engaging summary.

PhD infographic

…and there you have it. A fully published PhD thesis via a variety of avenues. I hope that you enjoy publishing your PhD thesis, and that publishing it helps you to defend it.

Also…If you need a co-author, let me know!🎓😉

If you would like to follow the progress of my work going forward..

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

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10 Top tips for caring for women with Hypermobile Ehlers-Danlos Syndrome in pregnancy for International Day of the Midwife #IDM2018 & #EDS awareness month

 or ‘International Day of the Midwife’ falls on May the 5th of every year. The theme for 2018 in three languages is…

  • Midwives leading the way with quality care
  • Sages-femmes, ouvrons la voie avec la qualité des soins
  • Matronas liderando el camino con un cuidado de calidad 

Also… Every May is Ehlers-Danlos Syndrome (EDS) awareness month around the world.

As such….for , and EDS awareness month… I shared 10 top tips for caring for women with hypermobile Ehlers Danlos Syndrome (hEDS) during pregnancy birth and beyond. These tips come from my latest paper, authored in partnership with Dr. Gemma Pearce (@GemmaSPearce) and Dr. Emma Reinhold (@DrEReinhold ), entitled …

Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond

Here, we present care considerations for midwives and the multidisciplinary team caring for this unique subgroup of childbearing women. However, we hope that women with hEDS will also benefit from this paper, as they make decisions in partnership with their professional health care teams. You can read the press release from this paper here.

I would personally like to thank the board members of the British Journal of Midwifery for making this article FREE for all to read. I would also like to thank the Royal college of Midwives for sharing news of the article here…and the Nursing Times for sharing further news here.

So what can midwives do to maximize the quality of care given to women with hEDS throughout pregnancy birth and beyond?…First of all….Know the facts…

  • There have been no prevalence studies since EDS received a major reclassification in 2017
  • Earlier estimates from 2006 suggest a prevalence rate of 0.75-2% for hyper mobile EDS
  • hEDS is the most common form of EDS
  • Up to 78% of women with hEDS could also have a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS)
  • POTS predominantly occurs in women of childbearing age
  • EDS is considered to remain largely under diagnosed.

Tips for midwives

  1. Discuss individual needs with women, as no two cases will be the same. Do this early, and always in partnership with the woman and the wider multidisciplinary healthcare team.
  2. Consider early referral to obstetric, physiotherapy and anaesthetic teams in partnership with the woman.
  3. Consider the need for alternate maternal positioning during pregnancy, birth and beyond. To minimise the risk of injury, positioning should be led by the mother.
  4. As wound healing can be problematic, the use of non-tension, non-dissolvable, deep double sutures, left in for at least 14 days is advisable.
  5. Wait longer for local anaesthetics to take effect and consider giving maximum dosage. Always be led by the mother on whether pain relief is sufficient
  6. Always consider the significance of a routine observation in light of existing POTS and/or EDS symptoms
  7. Promote spontaneous pushing rather than directed pushing during birth
  8. Promote effective pain management and the use of therapeutic birthing environments to promote reductions in stress
  9. Consider additional joint support for newborns suspected of having hEDS
  10. Document all joint dislocations and bruising marks on the newborn from birth to avoid misdiagnosis and/or wrongful accusations of mistreatment.

Research into EDS and childbearing is in it’s very early stages. We hope to build on this work to make a difference for all women with hEDS during pregnancy, birth and beyond.

pregnant belly

If you would like to follow the progress of this work going forward..

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

 

 

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Debunking Midwifery Myths

New article published here: Oh baby: seven things you probably didn’t know about midwives

…please share it widely!

dad with baby

As I am now coming to the end of my PhD (With lot’s of new and exciting things on the horizon I hope), I have been delving into the depths of the largest global online survey of midwives to date – the voices of over 2470 midwives in 93 countries!

Not only is this really an awesome and very important piece of work… it also holds some quite harrowing findings for our beloved midwifery profession. Yet this report also indicates that – if the voices of midwives are listened to, and if midwives are enabled to overcome gender inequalities and assume positions of leadership – quality of care can be improved for women and newborns globally. Wow….OK…we had better get to work then!

ALSO…

“Professionally, 89% of respondents reported that a clear understanding of what midwifery involves is critical for change to take place. Concerns were also expressed over the perceived devaluing of midwifery combined with the increasing medicalisation of birth.”

 

baby on blue

Professionally, the participants expressed concern about a lack of understanding of what “midwifery” is, the devaluing of the midwifery profession combined with the increasing medicalisation of birth, and the underlying weakness in midwifery education and regulation.

Now, I don’t claim to be able to fix the world in a day..but there was one thing that I thought I may be able to do from behind my PC. I could get an article published in @ConversationUK about the midwifery profession…perhaps I could even debunk some myths and set the record straight!…

I had my article published…please share it widely via the link below:

Oh baby: seven things you probably didn’t know about midwives

Now I was limited in this article. Limited in words and in how many points I was able to make in one article…editors need to keep their publications engaging!..and so yes…I did not manage to publish everything in this article as I would have liked to…and yes there are many many more myths about midwives that need to be debunked. But I am hoping that this will the a start of a new conversation.

Midwifery is defined as “skilled, knowledgeable and compassionate care for childbearing women, newborn infants and families across the continuum from pre-pregnancy, pregnancy, birth, postpartum and the early weeks of life” and it should be celebrated at every opportunity.

Let’s keep the conversation going around the importance of the midwifery profession. Midwives are crucial to the delivery of high quality maternal and newborn care and subsequent reductions in maternal and newborn mortality around the world. Yet they must be celebrated, respected and supported.

The core characteristics of midwifery include “optimising normal biological, psychological, social and cultural processes of reproduction and early life, timely prevention and management of complications, consultation with and referral to other services, respecting women’s individual circumstances and views, and working in partnership with women to strengthen women’s own capabilities to care for themselves and their families” – Can we start to spread the word on this now please?

baby on back

If you would like to follow the progress of my work going forward..

Follow me via @SallyPezaro; The Academic Midwife; This blog

Until next time…Look after yourselves and each other 💚💙💜❤