Written evidence submitted by The MASIC Foundation (MSE0080)

 

 

Safety of maternity care to prevent severe perineal injuries. Evidence submitted on behalf of The MASIC Foundation.

 

To Mr Jeremy Hunt, MP

 

I am writing to you as a mother of three who sustained a severe perineal injury when my third child was born. I had a fourth-degree tear (known as an obstetric anal sphincter injury – or OASI) and I suffer from permanent bowel incontinence which I have to manage daily. I am also writing as Administrator of the MASIC Foundation on behalf of their Trustee Executive Committee.

The MASIC Foundation (www.masic.org.uk) is the only UK charity to support women who have suffered the consequences of severe perineal injury during childbirth, resulting in bowel incontinence. The organisation represents injured women and a wide range of health professionals, all committed to ensuring safe, high quality clinical care to prevent and minimise the consequences of these severe birth injuries.  Those supporting our work include midwives, physiotherapists, obstetricians, primary care clinicians, incontinence advisors, urogynaecologists, colorectal medical and nursing personnel, psychologists and lay advisors.

OASI is a major women’s health issue which impacts on their life-course physical and mental health, but few people know about it because it is an unspoken taboo which only the women who suffer understand.  The MASIC Foundation is raising awareness among the public and healthcare professions by creating women’s support groups, contributing to primary research into prevention and management of injuries, and providing education days to improve clinical awareness of evidence-based practice.

Baroness Cumberlege, Chair of the Independent Medicines and Medical Interventions Safety Review, said of our charity The MASIC Foundation aims to reduce the incidence of birth injury as well as helping new mothers who suffer in silence from its symptoms which are too often hidden in society. These issues are crucial to the future well-being of women and their families which I strongly support”

The MASIC Foundation have campaigned with parliamentarians in various APPG’s and have previously given presentations to colleagues in Westminster, the Welsh Assembly and Scottish Parliament. The Foundation advise on midwifery pre and post-registration training to support evidence-based perineal care, and importance of the routine GP six-week postnatal check to ask women about bowel symptoms to promote appropriate and timely secondary referral. Our members contribute expertise to relevant maternity care policy, including the advisory board of the Royal College of Obstetricians and Gynaecologists (RCOG) OASI Care Bundle, the postnatal physiotherapy reference group supporting the NHS Long-Term Plan and revision of pelvic floor services in response to the COVID-19 pandemic.  As invited stakeholders to a range of relevant NICE guideline programmes, the MASIC Foundation are providing evidence to improve routine NHS pregnancy and postnatal care.

The women who have suffered severe perineal trauma we have spoken to, support normal vaginal birth, provided this is safe for the individual woman and her infant. They believe that women with a high-risk pregnancy should have mode of birth options discussed with them, in line with the Montgomery ruling. Unfortunately, informed choice about mode of birth is still not widely offered to women, resulting in potentially unnecessary physical and psychological birth trauma.  Our MASIC Ambassadors (women who have suffered birth injuries) are not campaigning for routine caesarean sections (CS), as they recognise that this mode of birth carries risks of its own. They do feel however that maternity care should not be driven by a policy of maintaining CS births below a certain rate. Economic arguments for this policy are questionable when long-term costs of vaginal birth injuries are included. High quality, timely information about risk in pregnancy and better processes of shared decision-making and informed consent are urgently needed, along with high quality midwifery and obstetric training in perineal repair and audit of outcomes.

Our MASIC Ambassadors would also like draw your attention to the work the charity is doing with The OASI Care Bundle, which is supported by the RCOG and Royal College of Midwifery (RCM) as a primary prevention intervention to reduce perineal injury. Our Ambassadors are keen to emphasise how the care bundle could improve the safety of maternity care through reducing inconsistencies in clinical practice and training.

 

The key components of The OASI Care Bundle are:

 

The OASI Care Bundle are about to launch phase two of their work across UK maternity units, supported by The Health Foundation. The outcome of the first phase of rollout showed evidence of a significant reduction in OASI. Even though antenatally, as part of the programme, women had the risk of severe perineal tears explained to them, there was no increase in the rate of caesarean section or episiotomy (https://obgyn.onlinelibrary.wiley.com/doi/10.1111/1471-0528.16396)[1]

At the launch meeting of The MASIC Foundation in March 2017, we heard powerful stories from women about the impact of birth injuries on their lives. We learned about the complex relationship issues with their partners and the psychological consequences of this hidden health problemWe learned from research with focus groups how difficult it was for women to talk about these issues, resulting in extreme social isolation and years of suffering before seeking support and treatment [2]. It is vital for the women’s voices to be heard when it comes to avoiding injuries which impact on their lives (and their families’ lives) so catastrophically. The MASIC Foundation believes that your Committee will recognise the importance of these voices and that many more women suffer in silence.

Rates of OASI have risen in the UK over the last 10 years with almost half of the affected women suffering some loss of bowel control. It is essential that every effort be made to prevent this injury.  Some of this increase reflects better identification of OASI at the time of birth, but this would not account for the overall increase in injuries, with continuing variation in clinical training and lack of assessment of skills to provide this care [1,3]. Potential changes in birth practices [4] may also impact on unsafe management of women having vaginal births.

Since our launch meeting, The MASIC Foundation has worked closely with the RCOG and RCM, with women’s stories driving the urgent need to improve practice. Over 20 of our MASIC Ambassadors have contributed to a statement (see Box 1 below) outlining their support for primary perineal tear prevention though the OASI care bundle, and that injuries missed at birth which have had such devastating consequences could have been avoided by a detailed perineal examination as part of their immediate birth care.

The costs of these injuries are considerable at an individual and societal level, with largest clinical negligence pay outs given to those in receipt of unsafe, poor quality maternity care.   In addition to personal costs, are the loss of earnings amongst women who have had to give up paid employment and costs of modern therapeutic procedures such as neuromodulation, daily irrigation, and in some cases, stoma. Women may require multiple surgical operations over a period of years in an effort to manage their symptoms. Reconstructive surgery for urinary incontinence and pelvic organ prolapse has often involved insertion of pelvic mesh, the consequences of which were often not explained to women.  The outcomes of the lack of support to involve women in decisions about care is highlighted in the Independent Medicines and Medical Devices safety review led by Baroness Cumberlege [5].

Many of our MASIC Ambassadors continue to suffer with significant pain and discomfort, experiencing mental health trauma and ongoing clinical investigations. They need support as they move on with their lives, but birth memories are difficult to eradicate. Women with these injuries are experiencing a particularly stressful time owing to COVID-19 restrictions, as clinical consultations may be cancelled or offered online, an option which may pose particular difficulties if women have to describe intimate and embarrassing symptoms to a clinician they have never met before. There is also the fear for their safety and that of their child of contracting the COVID-virus at hospital appointments, despite reassurances that attending NHS units is ‘safe’ in terms of infection control procedures. 

The current pandemic has resulted in a huge backlog of clinical appointments for necessary and important clinical investigations, counselling and treatments that could help women. In addition, the pandemic has highlighted the acute lack of toilet facilities for women in the public domain, so that women have become dependent on volunteers to assist with daily tasks such as shopping, as they would rather avoid going out than having ‘an accident’ due to not being able to reach a public toilet in time.

The MASIC Foundation is keen to contribute evidence to address the safety of maternity services in England. I believe your Committee would benefit from presentations from our MASIC Ambassadors who can offer a measured view of priorities to improve outcomes and experiences of care. They would very much like to support the Committee to help women give birth in a safe, high quality maternity system, supported by healthcare professionals trained to the highest possible standard in all aspects of their care.

 

Anna Clements

Administrator and Co-ordinator of The MASIC Foundation

 

On behalf of MASIC Executive Committee:

Professor Debra Bick (midwifery) RM BA MMedSci PhD.  Chair of Trustees

Professor Michael Keighley (surgery) MA MS FRCS. President

Professor Robert Freeman (obstetrics and gynaecology) MD FRCOG Education

Mr Geoffrey Hand (lay) MA (Oxon) FCIArb (retired) Treasurer and Legal advisor

 

 

 

*Statement of Support for the RCOG/RCM OASI CARE BUNDLE representing views of over 20 MASIC Foundation Ambassadors

 

We wish to express our support for the nationwide implementation of the Royal College of Obstetricians and Gynaecologists/Royal College of Midwives OASI (Obstetric Anal Sphincter Injury) Care Bundle. The OASI Care Bundle aims to reduce the incidence of severe perineal injuries, which can severely affect a woman’s ability to control her bowel function, compromising her dignity and quality of life.

 

We are living with the physical and psychological consequences of these injuries, including anxiety, depression and post-traumatic stress disorder. All of us have had to endure a great deal of embarrassment about the need to access toilet facilities in a hurry. For some of us, symptoms are so severe we have had to give up our jobs.

 

One of our particular concerns is the lack of support for better detection of these injuries. Many of us had missed OASI/third- or fourth-degree tears, which if identified and repaired at birth could have prevented the consequences we’re now dealing with. As long as women are asked for their consent, evidence shows that many would have no objection to a rectal examination after delivery. This supports our views of the importance of this assessment following birth to check that no injury has occurred.

 

We also feel that if we had been warned about these injuries antenatally, we may have been better able to cope with them. We would also like to have been informed that it was potentially possible to prevent these injuries, using appropriate intervention.

 

Maternity clinicians i.e. midwives and many obstetricians may not see the long-term impacts of an OASI unlike colo-rectal surgeons and urogynaecologists who have raised this issue but have seen little policy priority for the NHS to improve care. The consequences of these injuries never go away, and continue to affect our relationships with our partners, children, family and friends, leaving many of us isolated, stigmatised and unable to discuss our condition. For some, the symptoms we suffer will become worse as we reach the menopause.

 

Many health professionals and members of the general public do not know that around one in ten women experience lifelong bowel incontinence, many of whom will have had a severe perineal tear.

 

As Ambassadors of The MASIC Foundation, the only UK charity that supports women with these injuries, we urge you to consider the benefits of The OASI Care Bundle, which is backed by the Trustees of this Charity, to consider why a clinical intervention that could potentially prevent a life-time of pain and distress for some women should not be supported in practice nationwide.]

 

 

 

References

 

1.Impact of a quality improvement project to reduce the rate of obstetric anal sphincter Injury: a multicentre study with stepped-wedge design Gurol-Urganci I, Bidwell P, Sevdalis N, Silverton L et al BJOG (2020) https;//obgyn.onlinelibrary.wiley.com/doi/10.1111/1471-0528.16396

 

2 The social, psychological, emotional morbidity and adjustment techniques for women with anal incontinence following Obstetric Anal Sphincter Injury, use of a word picture to identify a hidden syndrome. Keighley MRB, Perston Y, Bradshaw E, Hayes J et al   BMC Pregnancy and Childbirth (2016) 16.275 DOI 10.1186/s 12884-016-1065y

 

3. Bick D, Ismail K, Thomas P, Macdonald S, Tohill S, Kettle C (2012).  How good are we at implementing evidence to support the management of birth related perineal trauma? A UK wide survey of midwifery practice.  BMC Pregnancy and Childbirth; 12:57

 

4. Ismail KM, Paschetta E, Papoutsis D, Freeman RM. Perineal support and risk of obstetric anal sphincter injuries: a Delphi survey. Acta Obstet Gynecol Scand. 2015;94(2):165-174. doi:10.1111/aogs.12547

 

5. Independent Medicines and Medical Devices Safety Review. ‘First do no harm’.  The Baroness Cumberlege Report. July 2020.

 

15 September 2020