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:
Ø review existing patterns of antenatal screening for congenital abnormalities
throughout South Wales
Ø to develop a model of care which can be applied uniformly to all pregnant
women normally resident in South Wales
Ø to recommend quality outcome measures which form the standards of future
audit within and benchmarking between units
Ø to maintain the highest standards of knowledge about new developments
in screening and their application to practice
Ø 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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