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Screening in Cardiff - The Golden Helix Proposal

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Screening in Cardiff
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Project Title:            Patient Centred Prenatal Screening - A Multi-Professional Quality Issue

Authors                          Dr R B Beattie, Consultant in Fetal Medicine, University Hospital of Wales
                                           Sr G Jones, Specialist Screening Midwife, University Hospital of Wales

Abstract                         AIMS MAJOR FINDINGS RELVANT MEASURES  OUTCOMES

Prenatal screening tests such as serum screening for Down's Syndrome, the Booking Ultrasound Scan and the 18-20 week Anomaly Scan are widely available in the UK to pregnant women but the pre-test information and counselling is varied even within a single hospital catchment area. There is a lack of consistent and comprehensive information about the tests offered, the conditions screened for and the implications  of the various tests for further management of the pregnancy.

There is often limited time to make decisions about diagnostic tests such as amniocentesis following a positive screening test result and inaccurate information about local services such as operator specific miscarriage rates for amniocentesis and the local diagnostic accuracy of ultrasound scans. Indeed there is great variation in the structures assessed at the 18-20 week Ultrasound Scan and in many centres it is combined with a Marker Scan as a screen for chromosomal abnormalities without the knowledge or consent of the pregnant women. Many tests are presented as routine and the role of the Ultrasound Scan as a test for congenital abnormality is not clear in the minds of many women who are more pre-occupied with seeing a heartbeat, finding out the sex of the baby and getting a photograph.

We have examined the whole process of prenatal screening by following the processes which pregnant women undergo from the time of their first contact with health care professionals through the various tests that are offered, the choices they make and the implications of their actions at each stage in the process.

It has become clear that in view of the various health care professionals involved in the care of a single pregnant women that the approach to assessing and optimising the process must be developed on a multi-professional basis with implications for education and updating for health care professionals and indeed their undergraduate and postgraduate training.

We have found that the best approach to providing standardised well rehearsed information given to pregnant women at each stage in the process was to produce a comprehensive annually revised patient information booklet which would be used as the basis for teaching and updating health care professionals and provide a source of readable information for pregnant women and their partners.

Pregnant women in Bro-Taf are now provided with a Health Authority funded Patient Information Booklet  at the time of their first contact with their midwife at home prior to their first hospital visit. The options and implications of prenatal screening tests are fully discussed  and the booklet left as a source of accurate written information about local facilities, services and contacts for further information.

The whole screening process has been standardised and women are now empowered to make informed choices about prenatal screening tests and fully supported throughout the whole process by all the health care professionals working to a well rehearsed and unified protocol. The process has now been adopted by the entire Regional Health Authority, which is unique within the UK, and there are plans to extend this approach across the whole of Wales.

Much of the work has been taken forward by the Department Of Health's Screening Committee. The Patient Information Booklet has been adapted by a number of other units throughout the UK and Channel Islands and well received at the December 1998 Royal College of Obstetricians and Gynaecologists Annual Consultants Conference.

We now plan to take the work forward through a representative on the DOH Screening Committee and the RCOG and Royal College of Midwives.

 

PRENATAL DIAGNOSIS, PATIENT INFORMATION, INFORMED CHOICE


Introduction

Background

In the past many women drifted into prenatal screening without ever really having had the chance to carefully consider their options and the consequences of their decisions before embarking on testing during pregnancy. Many tests were presented as routine (e.g. AFP/hCG or Triple Test or the 18-20 week Anomaly Scan) but threw up results that were difficult to interpret or led to further testing (e.g. amniocentesis) with the potential for miscarriage of normal babies.

Recent advances in knowledge and technology have led to even further complexity in the whole screening programme with many more abnormalities identified in early pregnancy. Furthermore, changes in the Law permit termination for abnormality right up until the time of delivery with those after 24 weeks including Fetocide by the direct lethal intra-cardiac injection of potassium chloride. The innocuous simple maternal blood test, or enjoyable 18-20 week scan to see the sex of their unborn baby or get a photograph may lead to a roller coaster ride of decisions and events which can culminate in the loss (termination or miscarriage) of a much wanted baby. In retrospect many women may not feel that they would have necessarily made the same decisions had they to do it all again and many felt directly or indirectly pressured to have further testing and termination for abnormal results.

Historical Perspective and Medical Model of Care

In the University Hospital of Wales (UHW), Cardiff, a midwife and a doctor booked women in the hospital antenatal clinic at 12-14 weeks. Prior to their hospital visit they were given a brief 1 page a4 document which discussed Down's Syndrome and serum screening. They had a dating scan without really having the opportunity to discuss the other potential findings such as major abnormalities like anencephaly or a non-viable pregnancy. They had a brief discussion about serum screening (AFP/hCG or Double Test for Down’s Syndrome) and the 18-20 week Anomaly Scan. The uptake rate for serum screening was about 80% and for the Anomaly Scan almost 100%. Women with a high risk (>1:300) for Down’s Syndrome were recalled to attend the weekly Amniocentesis Clinic were they were seen by a Registrar or Senior Registrar and offered an amniocentesis. They were given a 20minute appointment at which time they received counselling about the results, the pros and cons of amniocentesis and they were expected to make their choice and have the test completed.

Although the counselling was non-directive, the environment and circumstances of the consultation implied that amniocentesis was anticipated. Partners were not always in attendance and many women did not realise they would have to rest for 2 days with implications for child care school runs and work, causing additional stress at an already anxious time. When results were reported many did not realise that for every Down’s Syndrome baby identified on amniocentesis there would be a similar number of unusual or other abnormal chromosomal results. Although these results were abnormal they would not necessarily have led to an abnormal baby and thus reflex panic decisions for termination were always a possibility.  Amniocentesis procedures were then carried out by a variety of operators of varied experience with a miscarriage rate of about 3% and occasional failed amniocentesis procedures. There were no clear guidelines for training or assessing competence in counselling or amniocentesis.

The Introduction of Ultrasound Markers

The marker scan has been almost seamlessly integrated with the 18-20 week anomaly scan throughout the UK without the knowledge or consent of the woman who may wish to know about structural abnormalities but not necessarily information which alters a risk and may lead to anxiety and the decision for amniocentesis.  This scan can identify features which increase the risk of Down's Syndrome and other chromosomal abnormalities, and has meant that an increasing number of Down’s babies, almost half, are now identified by ultrasound scans rather than serum testing.  Furthermore a negative marker scan should reduce the risk to half of what it was though to be.

The problem with chromosomal markers is that whilst they may alter the risk they can’t either diagnose or exclude a chromosomal abnormality and the counselling becomes very complex in cases where the risk is increased but still not a high enough risk to justify amniocentesis with it’s inherent risk of miscarriage.  Extra work is also generated by both patient and health care professional requests for further scans and close surveillance because of the induce maternal anxiety and it has a detrimental effect on maternal-fetal bonding. The secondary counselling can be almost impossible with a tearful and shocked pregnant mother in a busy clinic with only a short amount of time available to medical staff for each patient.  Some obstetricians in other units have asked ultrasonographers not to report these markers in view of the time needed to properly counsel such women and the anxiety they engender causing problems for ultrasonographers who are uncomfortable concealing such information. In any case the ultrasonographers body language and concentration on a particular part of the fetal anatomy is often sensed by the woman during her scan and there are medico-legal consequences of recording such findings and concealing them.

The previous system was inflexible, offered limited informed choice, directed women towards having serum screening and amniocentesis and suffered from disparate management and an unacceptable high risk of iatrogenic miscarriage.

Methodology

The Need for Change

The need for change nationally was identified by the “Changing Childbirth” report from the Expert Maternity Group in 1992 who identified key components of Woman Centred Care:

1                     Services should be attractive and accessible to all women

2                     Receipt of accurate and unbiased information from her chosen lead professional carer

3                     Involved with her partner in planning of her care

4                     Cared for by professionals who have appropriate skills and expertise

5                     Review the counselling arrangements for prenatal screening tests

Locally the high amniocentesis miscarriage rates, formal complaints to the Trust and a report on Prenatal Screening in the former Mid Glamorgan District in 1996 prompted a review of services within the Trust and also the establishment of a Professional Advisory Group to report to the Bro-Taf Health Authority and develop a unified strategy for Prenatal Screening for Congenital Abnormalities.  Although the Royal College of Obstetricians and Gynaecologists have recently produced guidelines on Amniocentesis, Down’s Syndrome Screening and Termination for Abnormality most of their recommendations had been instituted by the UHW Fetal Medicine Unit prior to their publication. Similarly the many of the draft standards set National Standards Committee on Antenatal Screening had been implemented in UHW prior to their first meeting last year.

Initiatives

The main initiatives by the Fetal Medicine Unit have been to develop standardised written information and protocols for the prenatal screening programme within UHW, the development of a role for a Specialist Screening Midwife, a unique and cost-effective approach to secondary counselling and achievement of lower amniocentesis miscarriage rates by stringent training and restricting the procedure to two skilled consultant operators and one trainee. The training guidelines exceed that of the RCOG.

The Initiatives in Detail

1                     Specific Information Leaflets and the Patient Information Booklet

2                     Specialist Screening Midwife

3                     Secondary Counselling

4                     Amniocentesis

5                     Ultrasound

6                     Education

1: Specific Information Leaflets and the Patient Information Booklet

Standard Patient Information Sheets have been developed to cover topics such as Amniocentesis and Chorionic Villus Sampling, common markers such as Choroid Plexus Cysts, Pelvi-calyceal Dilatation, Echogenic Gut, Cardiac Echogenic Focus and Nuchal Translucency.  When markers are detected on scan the woman is sent directly to the antenatal clinic to discuss the findings and implications and is given a standard information leaflet with a contact number for the Fetal Medicine Unit and Specialist Screening Midwife.

In 1998 a Prenatal Screening Booklet was written predominantly by the main authors of this submission in conjunction with the BroTaf Professional Advisory Group formed the core of an educational programme we have developed for UHW community and hospital midwives, obstetric doctors, ultrasonographers and even auxiliary nurses in clinic. It covers all aspects of testing including information about the various conditions such as Down’s Syndrome, screening and diagnostic testing, serum screening, ultrasound scanning including markers and the limitations as well as the benefits of the various tests. It provides a checklist for health care professionals to discuss with the woman, contact numbers for local information and national organisations for additional information and support. The Booklet was originally given to the women either by post with the booking appointment, by the midwife at the first home visit or at the first hospital antenatal clinic. Now it is discussed and offered by the Community Midwife at her visit home visit prior to the woman's first hospital appointments.

The Booklet has been piloted for over a year and has been audited on 49 users in UHW (pregnant women) at their 18-20 week scan visit and 44 midwives. This has recently been submitted to the Health Authority and has provided valuable information for rewriting the second (1999) edition of the Booklet that is now to be used universally throughout Bro Taf. Indeed there has been much interest in the Booklet by other Maternity Units throughout the UK and the National Standards Committee on Antenatal Screening warmly received it. Already senior midwives in antenatal clinics throughout South Wales outside Bro-Taf use it and the other marker information sheets.

2: The Specialist Screening Midwife & Midwifery Model of Care

A new and unique role has been created within UHW, that of a Specialist Screening Midwife. Sr Gill Jones, the Fetal Medicine Sister has developed a new role within the unit as a result of the difficulties with the medical model of care described previously. Sr Jones was particularly suited to the role of Specialist Screening Midwife in view of her counselling skills, Clinical Genetics Training and her years of experience of clinical practice and research in this field.. Her main roles are as listed below:

Training  (Midwives, Doctors, Students)

                Audit & Standard Setting

                Networking (S.W.M.S.G.)

Patient Information Literature

                Screening Programme

A job specification  has since been drawn up for the Bro Taf Health Authority who have sought to identify a named Midwife in each of the other trusts in Bro-Taf. This model of a Screening Midwife co-ordinating the screening programme can be extended to all hospitals delivering antenatal care and already has been implemented in units outside Bro-Taf.

3: Secondary Counselling following Abnormal Serum Screening Results

Women with a high risk of Down’s Syndrome are contacted at home by telephone and invited to an appointment with the Specialist Screening Midwife on the same or next day. This provides much more rapid and flexible access, as all ten sessions (Monday to Friday, morning or afternoon), are available to accommodate the woman. The consultation takes place in a counselling room away from the main Radiology Department and Invasive Procedures Room (where amniocentesis is performed). The woman is encouraged to bring her partner if possible and advised that she will not be having any tests such as amniocentesis at that visit. This is important as anxiety about the actual test reduces the ability to absorb information and makes informed choice more difficult as in the previous system.

The session is open ended with no fixed time slot allowing counselling to be directed by the woman rather than a clinic timetable (Woman Centred Care). Some couples will leave for a short time to have a walk or a cup of coffee before returning to further discuss the issues that have been raised. They are offered a marker scan at that visit if they wish and in 1998 74% accepted. If the Marker Scan is negative it reduces the risk by 50% and the couple may not than wish to proceed to further testing such as amniocentesis. As an example, a women with a Down's risk of 1:250 with a negative Marker Scan now has a 1:500 risk which is a low risk result, a cut-off of 1:300 used to denote high risk or screen positive result in our unit. The option of a marker scan reduces the number of women proceeding to amniocentesis from 90% to 60% in those who accept.

After counselling the couple are offered an amniocentesis appointment within 3 days, written information about the test to discuss it further at home and a contact number for further information. They can then make the necessary domestic and work arrangements for the test and the 2 days of rest at home thereafter.  By the time the woman presents for amniocentesis the initial shock has subsided, anxiety levels are lower and they are fully informed of all their options and the possible pathways their actions may lead to. It also ensures that important issues that are often glossed over or not taken in during a single counselling/amniocentesis session are fully understood. This includes such important  concepts such as the finding of unusual results other than Down’s Syndrome, the possibility of culture failure (no result), the risk of miscarriage and the controversial late amniocentesis at 32 weeks.

Normal results are given by the Specialist Screening Midwife on the day they are reported to ensure a rapid reporting times. Most women will be rung on the same day if they have opted for results by phone or will be posted a letter with a first class stamp. Women with abnormal results are contacted by either the Specialist Screening Midwife or Fetal Medicine Consultant to break the news, provide further information whilst on the phone and to arrange an urgent appointment to discuss the women’s plans for her pregnancy. The woman’s’ consultant, GP and midwife are also notified. In most other units and previously in UHW, the woman’s consultant adopts this role but this slows down reporting and for complex results the general obstetrician may not always be able to answer the woman’s questions about the implications for the baby.

4: Amniocentesis

Only the Fetal Medicine Specialist Registrar is trained in Amniocentesis (and CVS) techniques under direct supervision for the first 50 successful first attempt amniocenteses before they are allowed to perform the procedure on their own. This exceeds the RCOG Guideline No.8. and is reflected in the fact that there have been no pregnancy losses in any procedures carried out by the trainee.  The named Amniocentesis Consultants in UHW are Dr RB Beattie and Dr NJ Davies who both hold the RCR/RCOG Advanced Diploma in Obstetric Ultrasound. The trainees who overlapped their training in Amniocentesis and CVS in 1998 were Dr A Wright and Dr M Sadiq.

A 22 gauge needle is used under direct continuous ultrasound guidance throughout the whole procedure for all amniocenteses. This ensures there is no risk of any injury to the fetus. The use of sterile probe covers is unique to UHW and reduces the risk of losses due to infection.

5: Ultrasound Scans

Another important initiative has been to standardise and improve the protocol for the 18-20 week anomaly scan. Written information in the Booklet and verbal information from either the Community or Hospital Midwives in early pregnancy allow women one of three choices for their 18-20 weeks scan, to decline it completely, have a combined anomaly and marker scan or to have an anomaly scan only.  They are also made aware of the limitations of the scan i.e. it can only detect about 70% all major structural abnormalities and a normal scan does not guarantee a normal baby.

Currently all women are booked for their anomaly scan during one of their Consultant or Midwifery Led Clinics and they automatically return to the antenatal clinic after their scan to discuss the results of all their screening tests i.e. the serum screening and the scan, even if they are normal. This acts as an important fail-safe against abnormal reports which get lost or are slow in reaching the clinic. Previously some women were contacted up to a week after their scan to be recalled to discuss abnormal findings or markers causing considerable anxiety and formal complaints against the Trust.

6: Education

The Fetal Medicine Unit have developed a co-ordinated midwifery and medical training programme based on the Booklet which has now been widened to include personnel outside the Trust. This ensures synchronised, uniform and up to date knowledge across all professional boundaries.

Medical Students: All Medical Students at UWCM rotate through UHW in their fourth year and are all given the Bro Taf Booklet and receive standardised lectures on Prenatal Screening by Dr R B Beattie including information on the role of the Specialist Screening Midwife, counselling, ethics and clinical genetics. This has a delayed but important knock-on effect on knowledge and influencing attitudes in both hospital doctors and GPs throughout Wales.

Midwifery Students: Sr G Jones and Dr R B Beattie participate in the structure and teaching of the Midwifery Diploma Educational Programme run by the UWCM College of Nursing though it has not yet been possible to ensure that all student midwives spend at least a day in the Fetal Medicine Department which is our ultimate goal.

SpR Trainees in Obstetrics: All Bro Taf Obstetric Trainees (hospital doctors) have an afternoon sessions on Prenatal Screening each year led by Dr RB Beattie and all are given the Bro Taf Booklet.

Community Midwives & Antenatal Clinic Midwives: In UHW annual small group teaching and assessment is organised by Sr G Jones but in view of the rapid turnover of midwives rotating into the Community from other ward areas it will be necessary to extend this to all Midwives working in the unit. An annual Study Day is organised through the UWCM College of Midwifery to examine issues in Prenatal Screening more closely and is open to all midwives throughout Wales. The inaugural meeting was well attended with over 100 delegates from various units throughout the Principality.

GPs: The Fetal Medicine Unit will be organising a one day update for GPs in September and already the 1999 Booklet is going to be distributed to all GPs on the Obstetric List later this year and this will be maintained annually.

Specific Information Leaflets and the Patient Information Booklet

The booklet was generally felt to be useful (62%) and readable (66%). It was thought not to provoke undue anxiety about the pregnancy in most cases (65%)  or to reduce it (12%). Some (24%) however felt it did cause them anxiety which unfortunately is a recognised complication of providing choice about prenatal testing and fetal abnormality. See Table 1.

Overall the detail was felt to be appropriate with most (88%) saying it was sufficiently detailed or needing further information (9%). Detailed evaluation of each section of the booklet showed that the users were happy with the amount of information in each section (71-86%) or wanted more information (0-14%). Very few felt that specific sections should be shortened (0-3%) and none felt any section should be deleted.

Most users (53%) were offered the Booklet at their first hospital with similar proportions having received it by post (21%) or at the Community Midwife home booking visit (21%). Opinion was fairly evenly divided as to when it should be offered but 95% aid it should be at or before the first hospital visit (typically 12-14 weeks). See Table 3.

Most users (60%) read all of it whilst some (37%) read it selectively. See Table 4. As well as being informative it was intended that the Booklet was to be non-directive and this goal would have appeared to have been achieved with only 11% feeling it would influence them to have tests and 7% to not have tests. See Table 5. As one user commented “it offered choices but didn’t influence decisions”

Midwives in general though that users would find it difficult to read, was too detailed, wanted much of the booklet shortened and some sections deleted. They felt it would engender more anxiety than users reported.

Specialist Screening Midwife

The introduction of the Specialist Screening Midwife has ensured that we now have for the first time, accurate audit data on the whole screening process, a central focus for co-ordinating prenatal screening, a comprehensive programme of education and updating for Midwifery and Auxiliary Nursing Staff and the development of closer links between units in Bro-Taf with seamless care for women referred in from other units and indeed bringing some Fetal Medicine Services such as Fetocide to the women's own unit if she wishes.

Secondary Counselling

The Midwifery based Secondary Counselling has reduced waiting time for women to receive face to face counselling, reduced levels of anxiety during their secondary counselling and allows women to absorb more information and make better more informed choices about amniocentesis. It also has made more efficient use of Invasive Procedure lists and the time of the Fetal Medicine Consultant and Trainees and Ultrasonographers in that those booked for Amniocentesis are fully informed and firmly decided on having the test. A formal audit of women's choices following receipt of a high risk serum result showed that 90% proceeded to amniocentesis without a Marker Scan and 60% following one. Under the old system of single appointments for counselling and amniocentesis up to 40% of women would have declined amniocentesis using up valuable Radiology resources for amniocentesis which are not required.

Amniocentesis

Operator specific procedural miscarriage rates have been calculated and range from 0 to 0.3% within 21 days of amniocentesis compared with a National average of 1%. There were no failed attempts, which is better than national figures and a reflection of the skill of the operators and the value of high operator throughput.  Of the 12 cases with an abnormal karyotype there were 6 with Trisomy 21 and 6 with other often complex chromosomal abnormalities. Half of the women were under 35 stressing the importance of a universal screening programme rather than relying on maternal age. Genetic counselling was provided to all those with complex karyotype results.  5/6 Trisomy 21 pregnancies were terminated whereas 4/6 complex karyotypes continued the pregnancy. The issue of equal numbers of unexpected results is clearly addressed in the Bro Taf Booklet. One woman with a Trisomy 21 pregnancy intends to continue.


Discussion

It is difficult to assess the separate impact of each of these initiatives on the overall quality of care offered to pregnant women undergoing Prenatal Screening in UHW and Bro-Taf. Many components related to improving public knowledge and that of Health Care Professionals, especially student doctors and midwives, will exhibit a delayed response. Certainly the ultrasonographers and midwives have reported a much less anxious and better informed patient response to the presence of soft markers on scans and to receiving high risk serum screening results. The women make decisions with greater confidence and with greater knowledge about their options and the implications of their choices.

Feedback in the form of patient and health care professional questionnaires, the views of the local Maternity Liaison Committee and groups such as the Northern Fetal Society and the Royal College of Midwives have been used to refine the Patient Information Booklet and specific information sheets.

The Screening Midwife Specialist is an important catalyst for dissemination of information and knowledge to other healthcare professionals within the Trust but more importantly for updating that knowledge as technology moves forward and staff change. The recognised commitment to audit ensures continuous monitoring of the whole process and ensures that patient care is independent of the various Consultants or Midwives under whom the woman may book.

This project which began as a local Trust initiative has already had major implications throughout the Health Authority and South Wales and hopefully this approach will develop more widely.

The Regional Perspective

There is now an established network of Midwives within South Wales with an interest in prenatal screening. The main terms of reference for the South Wales Midwifery Screening Group are:

Ř       review existing patterns of antenatal screening for congenital abnormalities throughout South Wales

Ř       to develop a model of care which can be applied uniformly to all pregnant women normally resident in South Wales

Ř       to recommend quality outcome measures which form the standards of future audit within and benchmarking between units

Ř       to maintain the highest standards of knowledge about new developments in screening and their application to practice

Ř       to provide support and lines of communication and referral for midwives working in units which do not provide a full range of prenatal screening and diagnostic services

They meet bimonthly in Swansea which is geographically central to those travelling from as far as  Abergavenny and Haverfordwest. Dr R B Beattie is the medical advisor to the group and Sr Jones maintains a leading role. To date the group have been involved in the widespread dissemination of the Bro-Taf Booklet and in it’s assessment as a possible basis for the whole of Wales. The group also use the other marker and amniocentesis and CVS leaflets produced by our unit. Closer ties with other units has permitted to Fetal Medicine Unit to provide services such as Fetocide in the woman’s own unit remote from UHW rather than adding to the distress by admission to an unfamiliar unit at such a tragic time in a pregnancy. It also reduces the psychological strain on staff within the UHW who would otherwise have to take on the burden of all late terminations after 24 weeks as UHW have the only two Consultants  in Wales with the expertise to carry out this procedure.

A National Perspective

Informally the model of a programme co-ordinated by a Specialist Screening Midwife is being adopted in a number of units in South Wales following this lead from the UHW Fetal Medicine Unit and  there was great interest in this concept at the December 1998 RCOG Consultants Conference in London.

In conjunction with the Regional Clinical Genetics Service the Department of Fetal Medicine and the Bro Taf Professional Advisory Group have now established a one week intensive training course aimed specifically at providing the Specialist Screening Midwife with the necessary counselling skills and knowledge of Clinical Genetics and Prenatal Diagnosis. The first course was very successful with interest from within and outside Wales for the next one. Indeed the course that had been envisaged as running annually will have to be run at least twice in 1999 and fills an important and unique niche in the UK.

Sr Jones has now been asked by the Royal College of Midwives to be their Welsh Regional Representative on the National Standards Committee on Antenatal Screening based on her innovative implementation of a Midwifery Led Screening Programme.


Conclusions

We have found that the optimum way of improving the quality of the various services related to prenatal screening is to adopt a patient centred approach and to critically analyse each step in their decisions making process and consider it's implications. Based on this approach it is clear that a multi-professional approach is required with standardised information for the users, detailed agreed protocols and education and updating of the professionals and then audit with a view to quality  assessment. We are committed to continuous refinement of the whole process locally and dissemination of the best components of the system to other units in South Wales and Nationally, the latter being our main reason for submitting this project to the Golden Helix Award.Benefits to the Users

1                     Woman centred quality care

2                     Informed choice

3                     Reduced anxiety

4                     Time to make decisions with maximum support

5                     Reduced miscarriage rates due to better training and high operator throughput

Benefits to the Trust

1                     More efficient use of Obstetric Consultant time

2                     Reduced waiting times in clinic in accordance with the demands of the Patients Charter

3                     More efficient use of Radiology (ultrasound) resources

4                     Less complaints due to women being better informed prior to decision making

5                     High local and national profile for the Trust in both Obstetrics and Midwifery

6                     Good public relations and marketing with women opting to come to UHW for prenatal screening services and then returning to their own unit

7                     High quality clinical audit of prenatal screening producing data not available to most other Trusts in the UK useful for service development and planning

8                     The initiatives described are examples of good clinical governance

The adoption of the Booklet and other Patient Information leaflets outside UHW attests to their perceived value by health care professional but we intend to re-audit the 1999 Booklet using a detailed structured interview in conjunction with Ms P Ferguson from the Royal College of Midwives. We are also hoping to get funding to submit the Booklet to the Plain English Campaign for further of its readability and usefulness with a hope that it would gain a Crystal Mark.

The Bro Taf Maternity Services Liaison Committee have welcomed the Booklet and the Midwifery Model of Screening and fully support the concept of a highly skilled & trained Specialist Screening Midwife in each maternity hospital throughout Bro Taf, they welcome the additional time for decision making and the reduction of anxiety surrounding the whole area of screening. Positive public opinion has also been reflected in local newspaper articles.

The recent UHW Screening and Amniocentesis Audits submitted to the Bro Taf Health Authority show an improved safety of amniocentesis (low miscarriage rate of 0.3% versus 1% nationally) and a reduction in amniocentesis testing for those women who opt for a marker scan - 60% v 90%  (less use of resources and reduced risk of iatrogenic miscarriages from amniocentesis). Many of the complaints surrounding screening would not have occurred had the current system been implemented earlier and we will continue to monitor these as a valuable index of service quality.

We are now drawing up an Application for an MRC Research Grant this year to examine different aspects of the impact of screening on maternal and paternal fetal bonding, anxiety and attitudes of various cohorts of women going through our model of care in UHW and those in other units such as Newport to objectively assess the benefits and disadvantages of our new and their traditional model of screening.


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