UNIVERSAL NEWBORN HEARING SCREENING IN SCOTLAND
REPORT TO THE SCOTTISH EXECUTIVE
Dr Jackie Grigor
July 2007
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Contents
1. Introduction
2. Methodology
3. Executive Summary
4. Screening Programmes
5. Post-Screen Diagnostic Follow-Up Assessments
6. Post-Diagnosis Early Intervention and Support
7. Appendices
Acknowledgements
During the writing of this report there was consultation with members of the
Audiology Services Advisory Group, its paediatric sub-group, and with other
colleagues in educational audiology, paediatrics, speech and language therapy,
ENT, and the National Deaf Children’s Society.
I would like to thank all of them for their help and patience. In particular, I am very
grateful to Angela Bonomy and Ann MacKinnon for their help in the final compiling of
the report.
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1.
Introduction
1.1
In 1999, following Professor Adrian Davis' Critical Review of Screening
Services, the UK National Screening Committee (NSC) agreed to recommend the
introduction of Universal Newborn Hearing Screening (UNHS).
1.2
Approximately 1-1.5 per thousand children are born each year in the UK with
permanent congenital hearing impairment [PCHI]. The existing universal hearing
screen was based on the infant distraction testing carried out by health visitors at
around 8 months of age. This resulted in an average age of diagnosis of permanent
hearing loss of at least 14 months, often as late as 3 years of age.
1.3
Recent evidence suggests that the identification of permanent congenital
hearing impairment and intervention before the age of 6 months results in
substantially greater speech and language acquisition, with consequent life-long
benefits in terms of social and psychological well being, educational achievement
and employment prospects.
1.4
Pilot sites for Newborn Hearing Screening Programmes were established in
England from 2000, with the completion of the rolling programme in 2005. The
implementation of screening programmes in all the English sites was centrally
directed and centrally funded.
1.5
In 2001 the Scottish Executive issued a Health Department Letter (HDL 51)
which recommended that each NHS Board establish its own Universal Newborn
Hearing Screening Programme. Two Pathfinder Sites were to commence in April
2002, with a roll-out of UNHS across Scotland to be completed by April 2005. The
pathfinder programmes were expected to be cost neutral and no central funding was
to be allocated.
1.6
NHS Tayside and NHS Lothian were chosen as the pathfinder sites and
commenced screening in January and March 2003 respectively. A considerable
proportion of the first year's start-up costs was centrally funded. A third site, NHS
Highland, had already been operating its UNHS Programme since November 2001,
with funding from the Remote and Rural Initiative.
1.7
The implementation of programmes across all Boards was supported by the
Scottish UNHS Implementation group, under the auspices of the National Services
Division, who, along with the pathfinder sites themselves, provided start-up advice
through meetings, visits and roadshows. In addition, all Boards were guided by the
Quality Standards produced by NHS QIS for Pregnancy and Newborn Screening
Programmes.
1.8
By December 2004, with no ring-fenced central funding for hearing screening,
and amid many competing priorities, it had become clear that none of the Boards
was in a position to implement a UNHS Programme by the required deadline of April
2005. Following a letter from the then Deputy Health Minister, Rhona Brankin, in
December 2004, local funding was made available and the roll-out commenced in
April 2005 with UNHS in Scotland achieved by December 2005.
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1.9
The Public Health Institute of Scotland Needs Assessment Report “NHS
Audiology Services in Scotland” (January 2003) identified the inadequacies of
Audiology services in Scotland. There was evidence that Scotland’s best performing
paediatric Audiology service was below the average-performing service in England.
The report made specific recommendations for children’s Audiology services, the
implementation of which would be of significant benefit to the children and their
families who are referred from UNHS to Audiology for further assessment.
1.10 UNHS cannot stand in isolation from follow up audiology diagnostic, early
intervention and ongoing multi-agency support. As a result of concerns regarding
difficulties implementing UNHS in this context, Dr Jackie Grigor was appointed to
review and support the roll-out of the screening programmes across Scotland.
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2.
Methodology
2.1
UNHS should be a seamless process from screening through to post-screen
diagnostic audiology and early intervention and support where necessary : each
component should not be delivered in isolation.
For clarity and simplicity of explanation, however, this report breaks the process in to
3 parts, namely
 screening programmes
 post-screen diagnostic follow-up assessments
 post-diagnosis early intervention and support
2.2
The National Screening Committee (NSC) recommends that no screening
programme should commence unless there is a well-founded, follow-up diagnostic
and rehabilitation service already in place.
After consultation with members of the UNHS Implementation Group and Scottish
Executive it was agreed that Dr Grigor's remit would include not only UNHS but also
each Board's arrangements for follow-up audiological diagnostic assessment and
early support of the children and their families identified from the screen.
It was agreed that Dr Grigor should visit all NHS Scotland Boards on a fact-finding
exercise. Information and observations gathered would form the basis of the report.
2.3
Visits to each NHS Board were undertaken with the following objectives:

to review the planning and implementation of the UNHS Programmes

to examine the range and quality of the audiological diagnostic follow-up

to examine the arrangements for early support and management of those
children identified from the UNHS

to consider the sustainability of the programmes and equality of provision
across Scotland
2.4
Prior to the visit a letter was sent to each Board suggesting the range of
professionals and agencies with whom it would be helpful to meet. In addition a list
of topics to be discussed during the visits was sent to each service. These were the
screening programme, the arrangements for diagnostic follow-up and the early
intervention programme and support for families.
2.5 Visits commenced in June 2005 but because of difficulties many of the Boards
had in arranging these multi-agency meetings the majority of visits took place in late
2005.
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3.
Executive Summary
The purpose of this report is to provide a baseline picture for the Scottish Executive
of the Universal Newborn Hearing Screening programmes following their
implementation in 2005. It includes an examination of the arrangements for postscreen diagnostic follow-up and the early support and intervention offered to families.
It recognises the difficulties many audiology services have in meeting the required
standards, in particular for diagnostic assessments, due to chronic under-resourcing
and lack of training opportunities, and makes recommendations as to how these
difficulties may be overcome.
The report covers

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The newborn screening programmes
Post-screen diagnostic assessments
Post-diagnostic early intervention and support
Recommendations
Thoughts on regional partnerships
Skill-mix and multidisciplinary team working
Training needs
Aims
1) To review the implementation of UNHS programmes in each Health Board and to
consider the sustainability of these screening programmes
2) To ascertain the quality/adequacy of post-screen audiology diagnostic follow-up
assessments of children identified from the screening programme in each area
3) To assess whether good quality support and intervention is being offered to all
families of children identified with significant hearing loss
4)
To identify inequity of provision across Health Boards
Objectives
a) To look at each Health Board’s arrangements for implementation and continuing
good performance of its UNHS programme, taking into account

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


team working
protocols and care pathways
data collection
tracking of babies
parents’ access to information
equipment maintenance and replacement
continued training for screeners and screening managers
local professional awareness of the UNHS programme and its implications
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
arrangements for regular audit of all aspects of their screen performance
including parental satisfaction
b) To ascertain the follow-up arrangements for post-screen audiology diagnostic
assessments, including



the availability of adequate numbers of audiologists with the appropriate
knowledge and skills in early assessment and hearing aid management
the range of assessments available in each service
the existence of written protocols and care pathways for the children identified
from the screen
c) To identify arrangements for the provision and delivery of a good quality, positive
early intervention and support programme for children and families, looking in
particular at

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
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the existence of a properly functioning Early Years Support Team with well
established links with Education and Social Services
knowledge and experience of team members
mutual sharing of information between agencies
availability of support from time of identification and for 52 weeks of the year
recognition of parents as equal partners in care of their children
a holistic approach to the care of the children including good paediatric
medical care
links with voluntary support groups such as National Deaf Children’s Society
functioning Children’s Hearing Services Working Groups (CHSWGs)
d) To identify areas where children receive a less than optimum service and where
small population size, low birth rate or absence of appropriately trained staff
compromise the quality or sustainability of provision of diagnostic and rehabilitative
services for the children identified from the screening programme
Method
Each Board was visited between June and November 2005.
Each visit included, where possible



a meeting with the UNHS Implementation Team
a site visit with the screeners
a discussion with the chief audiologist
 a discussion with the wider multidisciplinary team responsible for delivering
the early intervention and support to families of children identified from the
screen
Some sites required more than one visit, and in addition there were numerous
telephone discussions.
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Limitations of approach
The findings from the visits are based on one person’s observations and
interpretations of discussions held during the visits. Previous knowledge and
experience inevitably come into play. Not all key personnel were available at each
visit with the result that not everyone’s view was represented.
It is, therefore, recommended that further clinical audit of each Board’s audiology
services for children should be undertaken.
Findings
1) Screening
All 15 Health Boards had successfully implemented well-functioning newborn
hearing screening programmes with excellent screeners and screening managers
achieving good coverage and acceptable referral rates for diagnostic follow-up.
Parents had good access to information regarding the screen, and there was early,
emerging, if anecdotal, evidence of parents’ satisfaction with the screen. All services
used the same IT data collection system.
Positive indications for the continuing development and sustainability of the
screening programmes are

regular meetings of the screening managers, which provide an opportunity for
all to share knowledge and experiences, including adverse incidents and how
to handle them, thereby reducing the isolation of all teams and, in particular,
the smaller ones

a positive programme of continuing professional development for all
screeners, including the opportunity to meet and train with screeners from
other teams

a high level of commitment to UNHS from the local screening teams
Threats to the sustainability of good quality screening programmes in Scotland are

existence of 15 disparate screening programmes combined with the absence
of a central co-ordinated steer

absence or under-use of regular auditing of all aspects of programmes

inconsistent and less than optimum use of screening IT system

inadequate liaison and interaction with local stakeholders, such as GPs,
health visitors, education support staff and speech and language therapists
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2) Diagnostic follow-up
There is significant variation across Health Boards in the range and quality of followup audiology diagnostic assessment and management provided to children identified
from screening programmes.

few Boards have an adequate complement of paediatrically trained audiology
staff able to provide a comprehensive, good quality paediatric audiology service

several Boards serving smaller populations, with fewer staff, are understandably
unable to provide a fully comprehensive paediatric audiology service within their
own area and send their children to larger, more experienced neighbouring
centres

despite an increased recognition of the need for dedicated audiology services
for children, some services with combined children’s and adult audiology
struggle to focus staff and resources on developing services for children and a
minority of services have failed to recognise the need to identify dedicated
paediatric audiology staff

while many services are aware of gaps in their provision, not all are actively
investing in appropriate staff development and training

there is a general shortage of audiologists with the appropriate higher specialist
training and experience in the area of early diagnostic assessment and hearing
aid management
 historically there has been a lack of training opportunities, compounded by
inadequate training budgets for audiology, and this situation still prevails despite
the recent modernisation investment

not all services are delivering the full range of diagnostic assessments that
should be available within the required timescale for children referred from the
screen

there is a lack of experience in the delivery of early diagnostic procedures and
the interpretation of results in this very young age group

while protocols are available for individual assessments, there is little evidence
that these are being actively followed and procedures audited

few services have comprehensive care pathways covering the diagnostic
procedures for all degrees and types of hearing loss, including auditory dyssynchrony/neuropathy
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3) Post diagnosis intervention and support
There is marked variation across Health Boards and Local Authorities in what
constitutes Early Intervention and Support, in the manner and timing of its delivery
and in the composition and functioning of the multidisciplinary Early Years Support
Teams.
There are examples of good practice where Early Years Support teams function well
with good links between Audiology and Education and Social Services, joint
planning, and full exchange of information across agencies.
In some areas a family-friendly approach was evident, and parental views and needs
were taken into account and valued.
Overall , the picture across Scotland is one of

inconsistent approach to delivery of early support and intervention with no
central direction from Health, Education or Social Services at Scottish Executive
level and little co-ordination or joint planning at Health Board and Local
Authority level

inadequate level of support for families in many areas, with parents of newly
identified hearing impaired children insufficiently supported and inadequately
informed

absence of properly functioning Early Years Support Teams in some areas

lack of relevant input from people such as speech and language therapists,
paediatricians, social services and voluntary support bodies in many areas

marked variation in the knowledge and experience in hearing impairment of
those providing the early support and intervention for parents and families
Recommendations
Screening
1. Health Boards must ensure the continuing good performance of UNHS
programmes by maintaining stable teams of screeners, providing continuing
professional development for screeners, and ensuring adequate arrangements for
equipment maintenance and replacement.
2. Health Boards should ensure the Quality Assurance of their local UNHS
programme by establishing regular audit of all aspects of the screening programme
and revising the programme accordingly. Seeking parental views is an essential
component of the quality assurance process.
3. Health Boards must recognise the important contribution of the nationally-acquired
IT screening management system [eSP] in maintaining consistency and quality both
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locally and nationally, and should facilitate the optimal use of the system through ongoing training for screeners and screening managers.
4. The Scottish Executive should appoint a National Newborn Hearing Screening Coordinator. The co-ordinator’s role should include

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supporting UNHS screening managers
audit of national screen performance through analysis of nationally agreed
system-generated reports
identifying areas of weakness to Health Boards and the Scottish Executive
recommending changes and developments required to improve performance
assisting Health Boards when required to implement change
Post screen audiology
1. The Scottish Executive should appoint a National Audiology Manager to direct and
monitor the modernisation and redesign of children’s audiology services in Scotland.
2. All audiology services must critically review their current provision using the
Modernising Children’s Hearing Aids Service (MCHAS) quality standards as a
benchmark.
3. Following this review, each service should produce a development plan identifying
actions required to achieve the necessary standards for post screen diagnostic
assessment and early hearing aid management. These plans should be realistic and
sustainable, taking into account the current and future availability of suitably qualified
audiologists and future arrangements for Quality Assurance.
4. Board areas with very small birth rates should not now or in the future consider
providing the higher specialised diagnostic assessment and early hearing aid
management of babies identified from the screen. They should develop formal
regional partnerships, or revise existing ones, to manage optimally these more
specialist aspects of a paediatric service
5. If a Board feels it is currently unable to provide a viable comprehensive quality
service then suitable arrangements must be put in place for the appropriate early
management of children identified from the screen. This may be for an interim period
while issues raised are addressed, or it may be a permanent arrangement.
6. To enable continuing improvement, all Boards should regularly review the
competencies both of the individual audiologists working with children and of the
service itself in order to identify gaps and deficiencies, and appropriate actions
should then be instituted.
7. The Scottish Executive should encourage the development of regional
partnerships where appropriate for the more specialist aspects of paediatric
audiology services.
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8. Where services work together in regional partnerships these must be jointly
planned and documented by all involved. There must be clearly defined protocols
and care pathways.
9. Under the auspices of the Audiology Services Advisory Group, the Scottish
Executive should commission Quality Standards for the management of children’s
audiology services and promote the use of standards from the British Academy of
Audiology (BAA) within Scottish services.
Early intervention and support
1. Health Boards, in conjunction with Education and Social Services, must ensure
that there is a properly functioning Early Years Support Team providing high quality
support and intervention for children and their families.
2. Each team must have an identified clinical lead.
3. Through their Child Health Commissioners, each Board must engage with partner
agencies to identify gaps and rectify deficiencies in their local provision and delivery
of support.
4. Health Boards must ensure that health professionals working with young hearing
impaired children and their families have appropriate knowledge and skills.
5. Health Boards have a duty to alert partner agencies to concerns about any aspect
of their service delivery.
6. All Health Boards should identify a named paediatrician who has responsibility for
all hearing impaired children in their area.
7. The Health Department should, together with Education and Social Services,
provide clear guidance on the statutory responsibilities of Health, Education and
Social Services with regard to the provision of early support and intervention
programmes for hearing impaired children.
8. The Scottish Executive should encourage Child Health Commissioners in all
Boards to take the lead on interagency working in order to ensure effective,
comprehensive and positive early intervention and support programmes.
9. In order to ensure consistency of approach and equality of provision, the Scottish
Executive, through the Audiology Services Advisory Group, should agree a national
model for the content and delivery of early intervention and support.
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4.
Screening Programmes
4.1
Current Position
By December 2005 all Boards had established UNHS Implementation Teams and all
babies were being offered hearing screening in the newborn period. The teams of
screeners were highly motivated and committed to the new programmes and good
coverage was being achieved. Screeners were rigorous in recording data and,
although very little formal audit had as yet been carried out, parents were reported to
be satisfied with the screening programme.
The national position is that

There are 15 distinct Universal Newborn Hearing Screening Programmes

6 programmes commenced in April 2005, with 5 rolling out between June and
December 2005. NHS Lothian, Tayside and Highland (including Western
Isles) had previously established programmes.

Individual screening programmes serve widely varying populations with birth
rates ranging from 135 to 9,500 live births per annum

All programmes are hospital-based with the exception of one Board which
opted for a community-based programme whereby Health Visitors carry out
the screening in the home.

There are 2 screening protocols:
 AABR x 2
 OAE x 2 plus AABR

Hearing screening is carried out either by dedicated screening staff, whose
sole responsibility is to the screening programme, or by nursing staff in
addition to their other duties in the wards. There is a fairly even distribution,
with the larger maternity units more likely to employ dedicated screeners.
Health visitors screen in the one community-based programme.
In Scotland, UNHS programmes have been implemented despite the fact that
diagnostic services are known to be inadequate in many areas, and support and
intervention programmes variable in quality and content across Scotland. The hope
is that implementing the screening programme will prove to be a driver for change
and will lead to developments and improvements in the audiology services provided
for children.
4.2
Concerns
There is as yet no mechanism to ensure the Quality Assurance of each programme
or that all programmes across Scotland are delivering the same, high quality
screening services for the children in their area. Despite this, implementation of
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UNHS has in the main been successful although there are concerns around aspects
of certain programmes which are sufficient to threaten their quality and sustainability.
4.2.1
Implementation teams
No screening programme should be undertaken without consideration of the
follow-up diagnostic assessments and the intervention programme for the
children identified from the screen. Implementations teams, therefore, must
involve all disciplines and agencies working with the children and their
families and should include colleagues from health, education, and social
services. [ref PHIS Report 2003 - Recommendations 1 and 2]

The majority of Health Boards have set up Implementation Teams which are
multidisciplinary in nature and involve colleagues from Health, Education, and
Social Services. There are, however, concerns that in some teams the value of
the different team members is not always adequately appreciated.

A minority of services have concentrated solely on the screening process. They
have given little thought to the impact of newborn screening on their services for
children, or consideration of any necessary developments in their diagnostic
assessments and early hearing aid management. The Implementation Teams in
these areas were correspondingly lacking adequate representation.

Significant omissions from the Implementation Teams in certain areas included
health visitors (who play a crucial role in supporting parents through the
screening and diagnostic process), IT support personnel, paediatricians, ENT
surgeons, speech and language therapists and social services.

It was clear that in some areas there was no tradition of multidisciplinary working,
joint consultation or joint planning, giving rise to concerns regarding future ability
to work together and function as a team.

Few services recognised the importance of including parents and voluntary
organisations in their implementation teams.
4.2.2
Protocols and care pathways
Written protocols for all stages in the screening and diagnostic process are
essential. They are a vital means of ensuring that all screeners and
audiologists within a region carry out procedures consistently and in the
agreed method. They encourage good practice and provide a way of
measuring and comparing practices within and across regions. All relevant
agencies should be involved in drawing up the protocols and in their regular
review.

Historically, written formal protocols have not always been used within
audiology and practices, therefore, have varied markedly within and across
Health Boards. The implementation of UNHS has highlighted the need for
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written protocols covering all aspects of the programme both at local and
national level

Protocols were not always in place. When protocols were in place there was
evidence that they were not always followed and were being adapted to allow
for local circumstances and difficulties. Arrangements were not always in
place to monitor this

Only a minority of services had clearly identified care pathways through the
screening process to diagnostic assessment, early management and support
4.2.3
The screeners
The establishment of a stable team of experienced screeners is essential to
maintain the good quality of all aspects of the screen performance and the
high coverage required by the standards laid out by NHS QIS. Adequate
training of new staff and the continuing professional development of existing
staff are vital. The role of the Screening Manager is crucial to achieving these
goals.
 The majority of services had well established teams of motivated screeners
who felt they had been well trained in all aspects of screening, as
recommended in the Implementation Group’s training pack.
 Those who combined screening with additional duties in the maternity unit
enjoyed their new role and the additional responsibilities it brought with it.
There were tensions when the wards were very busy and screeners were
under pressure to prioritise other duties. This demoralised screening staff, led
to babies being discharged with screening incomplete, and threatened the
coverage of the screening programme.
 The teams of dedicated screeners performed well despite early difficulties.
Lack of familiarity with hospital routines, initial high turnover of staff and time
taken in establishing good working relationships with both audiology and
midwifery staff resulted in delays in the programme being fully established.
 There was clear evidence of the negative effect which even temporary
inadequate staffing levels had on the achievement of a successful UNHS
programme.
 Not all areas followed the recommended national training package for
screeners with some areas making inappropriate cuts in their training
programme.
 The importance of continuing training and professional development for
screeners was not always recognised. The establishment of regular meetings
of screening managers has encouraged closer collaboration among
programmes and has led to further training opportunities. It is the
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responsibility of the Screening Managers to arrange on-going training and
regular appraisal for the screeners.
 Pressure to reduce the role of the Screening Manager could be detrimental to
the performance and quality of the screen.
4.2.4
Data collection and use of screening management system [eSP]
It is crucial that all demographic and clinical information pertaining to
UNHS and subsequent audiological assessments is accurately recorded to
ensure that all babies are included in the screen and outcomes correctly
documented. All Boards have purchased the screening management IT
system (eSP) to allow this to happen. This is an excellent and well-proven
tool for audit and for maintaining quality assurance within and across all
services. It is important that it is used correctly and consistently by all the
Scottish services.
4.2.5

Although all services were aware of the need to record information
accurately, and screeners were motivated in this regard, errors and
omissions were being noted by some managers, mostly to do with
confusing right and left ears and inputting incorrect dates and outcomes.

Not all services carried out random sampling on a regular basis to check
individual data recording and individual screeners’ performance.

There is still confusion among screeners and managers on the correct use
of the IT system, with different interpretations of definitions and outcomes
being used.

Training in the use of the IT system occurred as teams were setting up,
before the implications of its use were fully understood. It was unclear if
there was recognition of the need for ongoing training in the use of eSP as
it is being further developed.
Tracking of babies
It is important that services develop systems to be able to track babies both
through all stages of the screening and diagnostic process and across
geographical boundaries. The screening management system [eSP] will in
future allow services to share a baby’s information where a cross-boundary
scenario prevails.

The current version of eSP does not provide a failsafe mechanism for tracking
babies across different Health Board areas.

Not all audiology services are ensuring that later-acquired diagnostic
information regarding babies identified from the screening programme is fed
back into the screening management system. This is essential for audit and
quality assurance.
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4.2.6 Audit
Audit is essential to ensure standardised and quality assured screening
programmes [NHS QIS – Standards for Pregnancy and Newborn Screening
Programmes]. All Health Boards must ensure the quality of their screening
programme by carrying out on-going audit of all aspects of the screen
performance, paying particular attention to screen coverage, referral rates,
protocols and parent satisfaction.

4.2.7
At the time of the visits, most screening programmes were still in the early
stages, with only a minority having set up any system for the regular
ongoing audit and quality assurance of the performance of their screeners
and the programme as a whole.
Raising awareness of UNHS programme among local professionals
It is important that each Board promotes a knowledge and awareness of
their screening programme for all appropriate local professionals likely to
be involved with children and their families. All need to understand the
limitations of a screen “pass” and the implications when a child “refers”
from the screen, and to be aware of the possibility of later onset and
progressive hearing losses. It is the responsibility of the Screening
Manager to ensure that a regular feedback and education programme is in
place.

This was an aspect of planning neglected by many areas, often, though
not exclusively, by those services that rushed to implement by April 2005.
Only a proportion of services had followed the advice of the pathfinder
sites and invested in a programme of awareness raising prior to
commencement of the UNHS Programme.

There was little evidence of an ongoing programme of feedback and
education for all professionals involved.
4.2.8
Information for parents
It is essential that parents/carers are fully informed regarding the screen
and any associated audiological assessments. Information must be
provided in an accessible format and timely manner.

Despite all areas reportedly using appropriate information leaflets, a
significant number of mothers seemed to be unaware of the existence of
the screening programme. This calls in to question the effectiveness of the
ante-natal communication.

Not all areas were making effective use of interpreting services.

A number of services did not appreciate the importance of and skill
required for effective communication with parents.
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4.2.9
Community-based screening programmes
Only one Board in Scotland has opted for a community-based UNHS
programme, with health visitors carrying out the initial screening. There
are several community-based programmes in England and advice was
sought on the respective strengths and weaknesses of such a
programme.
Health visitors have a wealth of experience in working with mothers and
babies. Their long-standing involvement in the infant distraction test at 7/8
months and in child development has given them a knowledge and
understanding of the implications of hearing impairment. It would, therefore
seem a valid use of their time and skills to carry out hearing screening during
one of their early routine home visits.
There are, however, significant potential difficulties with this method of UNHS
delivery.

With large numbers of health visitors involved, each will individually carry
out a smaller number of screening tests and take longer to develop the
necessary skills, experience and confidence in carrying out the screen
than hospital based screeners.

Good initial training and supervision of all health visitors is required to
ensure that each health visitor understands and is able to impart to
parents the correct information regarding what a “clear response” or “refer”
from the hearing screen means in a way which neither falsely re-assures
nor needlessly raises anxiety. This can be difficult to achieve given the
large numbers.

The potential for data error is multiplied where large numbers of staff are
screening small numbers of babies.

There may be difficulties maintaining the skills, confidence and motivation
of a large body of staff spread over a large geographical area.
4.2.10 Equipment maintenance and replacement
It is essential that every Health Board has an adequate number of screening
machines and has a programme in place to ensure regular maintenance
and calibration. There should be provision for replacing and updating
equipment as required.

Not all areas had enough equipment to guarantee coverage at all times.

Few areas had made provision for times when equipment was out of
service for any reason.
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
There was not always evidence to show that daily equipment checks and
calibration were being undertaken in accordance with manufacturers’
guidance.

Services were unclear as to how to secure funding for replacement
equipment.
4.3 Conclusion
Universal newborn hearing screening programmes are in place in all Health Boards
in Scotland and are well established and have achieved high coverage.
The success of the implementation is largely due to the dedication and team working
of individual screeners and screening managers rather than any national coordination and support. The lack of any central leadership calls into question the
viability of individual screening programmes as and when any current personnel
move on.
The lack of any centralised training programme and recognised career pathway for
screeners is likely to lead to difficulties with retention and recruitment of screening
staff.
The IT screening management system is still under-utilised and used inconsistently
by different Health Board areas. Ongoing training to gain maximum potential and to
ensure consistency is required by all screening and audiology services. This will
facilitate regular audit and provides opportunities both locally and at a national level
to assess screen performance, compliance with protocols, diagnostic audiology
services and ongoing audiology management. Good audit will identify inequality and
variance of practice across and within Health Board areas and help to highlight areas
of good practice that can then be shared. This is essential to deliver a high quality
service and ensure clinical governance requirements are met.
4.4
1.
Recommendations for Screening Programmes
Health Boards
1. Health Boards must ensure the sustainability and performance of their UNHS
programmes.
2. Health Boards must maintain stable, high quality teams of screeners and
support their screening manager. Ensuring good staffing levels with provision
for continuing professional development [CPD] of all screeners is essential.
3. Health Boards must provide adequate levels of equipment and ensure its
calibration, maintenance and replacement according to manufacturer’s
guidance.
4. Health Boards must appreciate the importance of optimal use of the screening
management system [eSP] and consequently facilitate ongoing training for all
involved staff to ensure the potential of the system is maximised.
19
5. Health Boards should ensure the Quality Assurance of their local UNHS
programme by establishing regular audit of all aspects of the screening
programme. The seeking of parental views is an essential component of the
Quality Assurance process.
2.
Scottish Executive
The Scottish Executive should appoint a National Universal Newborn Hearing
Screening Coordinator. The Coordinator’s role should include :

supporting UNHS screening managers

audit of national screen performance through analysis of nationally agreed
systems generated reports

identifying areas of weakness to Health Boards and the Scottish Executive

recommending
performance

assisting Health Boards when required to implement change
changes
and
20
developments
required
to
improve
5.
Post-Screen Diagnostic Follow-Up Assessments
5.1 Clinical Governance
In the interests of Clinical Governance, each Board must ensure that babies
referred from the newborn hearing screen are seen for follow-up by clinical
scientists or audiologists who are experienced in working with children, and
who have the necessary knowledge and competence in electrophysiological
measurements in very young babies and infants, in early behavioural
assessments such as VRA [visual reinforcement audiometry], and in early
hearing aid management. There should be sufficient throughput of babies
identified from the screen who require assessment, such that the necessary
skills and experience are acquired and maintained, and there should be
regular peer review of these technical and interpretative skills.
5.2 Context
Universal newborn hearing screening provides us with the opportunity for earlier
identification of permanent childhood hearing impairment (PCHI), and thus earlier
intervention and habilitation. This has been shown to be crucial for improved
outcomes in the development of the child’s communication, speech and language
skills and also in facilitating good parent-child interaction. This presents a challenge
for the audiologists involved, due to the need for good quality, effective diagnostic
assessments following the screen.
If services cannot ensure good quality diagnostic assessment and effective
intervention (including hearing aid fitting where appropriate) by the age of 6
months, then the desired objectives of improved outcomes in language and
communication development, social and emotional development, readiness for
mainstream education, and educational achievements may not be realised.

in the past, the average age of diagnosis of children’s hearing loss was
around 12 – 15 months at best. Diagnostic assessment was largely by
behavioural methods. Electrophysiological measurement, if required, for
babies under 6 months or difficult-to-test children was confined to the nonfrequency-specific click ABR which was often carried out in a regional centre
under general anaesthetic.

with the advent of UNHS, diagnostic testing now takes place much earlier at
around 4-12 weeks of age, when only electrophysiological measurements are
possible for threshold assessment and babies are ideally tested in natural
sleep. A greater range of frequency-specific electophysiological
measurements is now available. These are not intrinsically difficult to perform,
but can be difficult to interpret in this age group, with the potential for errors.
Audiologists must develop knowledge and experience of working with these
assessments, young babies and their families.

not all babies identified with PCHI will have hearing aids fitted at this early
stage. Much will depend on the level of hearing loss, on the audiologist’s
21
confidence in the accuracy of threshold information from the tests, and on
parents’ wishes.

correct and effective fitting of hearing aids when the child’s developmental
stage makes it difficult to demonstrate responses requires detailed knowledge
of normal child development, a clear knowledge of the functioning of digital
hearing aids, and a willingness and ability to work empathetically with parents
and families.

collaboration with colleagues from Health, Education and Social Services who
are involved with the child and family is essential
5.3 Summary/findings
Since the publication of the PHIS Audiology Needs Assessment Report in 2003 there
has been a greater awareness of the need for dedicated audiology services for
children.

children’s audiology services now have a higher profile in some Health Board
areas.

the work of the Modernisation Project and Audiology Services Advisory Group
has resulted in a greater understanding of the differing needs of children and
their families from adults attending audiology services. More services are now
aware of the need to develop audiologists with the appropriate skills and
experience in the specialist field of paediatrics.

at a national level there is an increased recognition of the need for training in
many aspects of paediatric audiology and a greater willingness to organise
and share training opportunities. . There are concerns that this recognition
does not translate to individual Board level.

a welcome development has been the setting up of a Peer Review Group for
specialist diagnostic assessments, though this is voluntary and only accessed
by a minority of audiologists.
5.4 Concerns
The majority of Health Boards have combined adult and children’s audiology
services and, therefore, find it difficult to focus attention and resources on the
children’s needs because of the huge pressure on adult services

not all areas have been willing or able to identify paediatric audiologists with
the appropriate knowledge and experience in early diagnostic procedures and
early hearing aid management

not all departments are able to provide the full range of diagnostic
assessments that should be available for children identified from the screen
22

lack of expertise in early diagnostic procedures and inexperience in
interpreting information from these early assessments is, in certain areas,
causing delay in completion of all assessments and in confirming the final
audiological picture

the skills necessary for the fitting of hearing aids in very small babies,
including knowledge and familiarity with appropriate paediatric prescriptive
methods for hearing aid fitting, the regular use of Real Ear Measures, and
experience with the full range of the new digital aids for children are scarce
The general shortage of appropriately trained and experienced audiologists, the lack
of higher specialist paediatric training opportunities, the absence of mandatory
professional registration and CPD, combined with the huge pressures on adult
services have made it extremely difficult for services to prioritise paediatric issues.
These difficulties are compounded by wide variations within Health Boards in the
size of their populations, birth rates and existing audiology services
To demonstrate this variation and post code lottery, services can be divided into 3
main groups:
Group 1
This group consists of areas that do not have a sufficient birth rate to allow
audiologists, even if they are available and have previous paediatric experience, to
acquire and maintain the necessary skills and expertise in early diagnostic
assessments and early hearing aid management following UNHS.
Several of these areas have already put in place formal or informal arrangements to
send babies identified from the screen to regional centres for follow-up diagnostic
assessments and early fitting of hearing aids where appropriate. The children’s
audiological management is then shared as appropriate between the regional and
local teams
Group 2
This group comprises areas with stand-alone paediatric services, or well-established,
separately-run paediatric arms to their combined service who are currently able to
provide an adequate follow-up diagnostic and early hearing aid management service
for babies identified from UNHS. All have a much greater throughput of children than
in Group 1 and already accept children referred to them from other UNHS
programmes for diagnostic assessment and early hearing aid management. All have
identified paediatric audiologists with appropriate knowledge and experience and
have recognised the need to develop and keep up to date.
Group 3
This is a less clear-cut group. They vary widely both in their birth rates and in their
approach to comprehensive paediatric audiology service delivery.
While each of these departments is attempting to deliver a follow-up diagnostic and
hearing aid service for the children identified from the screen, it is questionable
23
whether the current service provided is adequate. It is uncertain whether it will be
possible for them to have sufficient staff levels and competencies to provide a quality
service in the future.
5.5
Conclusion
There are inequalities in the provision and standards of paediatric audiology services
across Scotland. These are influenced by a number of different factors








birth rate
historical practice
management priorities
financial constraints
paediatric philosophy
awareness of already developed paediatric standards and protocols
holistic approach to paediatric care
ability of staff to acquire and maintain the requisite skills
Looking at Scotland as a whole, and acknowledging the implications for each Board
of developing the service to the required standard, it is unlikely that in future a fully
modernised, high quality paediatric audiology service able to provide the full range of
specialist paediatric services will be able to be maintained in every Health Board
area.
5.6
Recommendations for Health Boards
1. All services should look critically at what they are presently able to provide and
carry out a review of the audiology services offered to children in their area using the
MCHAS quality standards as a benchmark.
2. Following the benchmark review each service should produce a development plan
identifying what must be done in order to meet the required standards for postscreen diagnostic audiology and early management. Plans for the development of
the post-screen follow-up diagnostic and early hearing aid management service
should be realistic and sustainable, taking into account the current and future
availability of suitably qualified audiologists and future arrangements for Quality
Assurance.

Board Areas with very small birth rates should not, now or in the future, consider
providing the follow-up diagnostic assessment and hearing aid management of
babies identified from UNHS. They should develop formal regional partnerships
or revise existing ones, to manage optimally the more specialist aspects of a
paediatric service

If it is felt that a Board is currently unable to provide a viable quality service then
they must make suitable alternative arrangements for appropriate early
management of children identified from UNHS. This may be a permanent
arrangement or for a limited period while they are address the issues raised.
24
3. To enable continuous improvement all Boards should regularly review the
competencies both of the individual audiologists involved with the children and of the
service itself in order to identify any gaps and deficiencies and appropriate actions
should then be instituted.
4. Where regional partnerships are required these must be formally agreed and
documented by all involved Boards. There must be clearly defined protocols and
pathways (see Appendix C).
5.7
Recommendations for the Scottish Executive
1. Under the auspices of the Audiology Services Advisory Group, the Scottish
Executive should commission Quality Standards for the management of children’s
audiology services, and promote the use of Standards from the British Academy of
Audiology (BAA) within Scottish services.
2. The Scottish Executive should encourage the development of regional
partnerships for the more specialist aspects of paediatric audiology services (see
Appendix C).
3. The Scottish Executive should appoint a National Audiology Manager to direct and
monitor the modernisation and redesign of children’s audiology services in Scotland.
25
6. Post-Diagnosis Early Intervention and Support
6.1
Requirement for intervention and support
Good quality early intervention and support are essential to ensure a successful
outcome from UNHS and to enable individual children to reach their full potential.
While the perception may be that this is a “nice to do” it is in fact a “need to do’ as
the consequences of not doing so may lead to :




6.2
significant mental health problems
underachievement in education
poor employment prospects
long term costs to society
Remit of Report
It was not in the remit of this report to examine the content of the early support and
intervention programmes delivered by the Education authorities and other agencies.
It was, however, appropriate to look at those aspects of the intervention programme
which were the responsibility of the Health Board and to examine whether Health
services had established properly functioning links with Education and other
agencies involved in early support. In addition, attention was given to whether there
was consistency and co-ordination in the delivery of services by all the agencies
involved.
6.3
Context
An early support and intervention programme is essential regardless of whether or
not hearing aids are fitted. The primary aim of intervention for the hearing-impaired
child is to enable the child to develop a first language which they need in order to be
able to communicate and make sense of the world around them. This may be an oral
language or sign language depending on the needs of the child and the wishes of
the parents. The role of parents is crucial if the desired successful outcomes from
UNHS are to be realised. To enable parents to fully participate in the support and
early intervention programme they require :





emotional support
full unbiased information
practical help
specific language and communication advice
access to appropriate medical services at an early stage
Families will be involved with a variety of professionals, each providing a different,
though often overlapping, aspect of the early support and intervention. It is crucial
that all those involved work closely with the parents and with each other, and
function as a multidisciplinary “Early Years Support Team”.
26
6.4
Findings
There is huge variation across Health Boards and services in Scotland in the
composition and functioning of Early Years Support Teams, in what constitutes early
support and intervention, and in the manner and timing of its provision.
There are many examples of good practice across the country:

in several Board areas, Early Years Support Teams have been set up with
appropriate representation from involved agencies. Speech and language
therapists, paediatricians and audiovestibular physicians, education services,
social services, and representatives from voluntary bodies are included in the
teams, where available.

these teams recognise the need to work together with joint planning and
mutual exchange of information among team members and with parents. They
share a holistic, joined-up approach to the care of the children.

in a number of teams, the potential impact of early identification of hearing loss
has been acknowledged and has acted as a catalyst for further training and
development.
6.5
Concerns
Many Health Boards and audiology services give little consideration to early
intervention and support, regarding this as the responsibility of Education and other
services. Only a minority of Boards had examined the impact of early identification
on their practices
A holistic approach to children identified from UNHS is lacking in many Boards.
Many Boards did not have appropriately constituted multidisciplinary teams with
representation from all the required professions.
In many cases, despite the existence of teams, there were deficiencies that included




lack of joint planning
lack of protocols and pathways
no planned multidisciplinary reviews
lack of information sharing
Not all teams had identified clinical leads/coordinators
Only a minority of Boards had a designated paediatrician with responsibility for
hearing impaired children.
Few of the audiology services or wider support teams had recognised the
importance and value of engaging with parents and of harnessing their views and
experiences in developing their services.
27
There is significant variation in the availability, accessibility and timing of the support
being offered, with some areas unable to provide appropriate support 52 weeks a
year.
There are inconsistencies in the audiology services being provided across Education
authorities.
There were concerns that not everyone working within the early support teams have
the necessary competencies, experience and skills to adequately support the
children and their families.
There is lack of clarity about the statutory responsibilities of Education and Social
Services with regard to the provision of early support and intervention for children
identified from UNHS
Few Boards have adequately functioning CHSWGs
6.6 Conclusion
Although there are several examples of good practice in providing good quality early
support and intervention for children and families, the picture across many areas in
Scotland is one of

inadequate level and quality of support for children and families.

inconsistent approach to delivery of early support and intervention with no central
direction from either Health or Education at Scottish Executive level.

absence of any formal structure to the support and intervention in many areas

absence of any examination of the clinical competencies of those providing
assessments and support for the children and families.
6.7
Recommendations for Health Boards
1. Health Boards, in conjunction with Education and Social Services, must ensure
that there is a properly functioning Early Years Support Team, providing high
quality support and intervention with an identified clinical lead.
2. Through their Child Health Commissioners, Health Boards must engage with
partner agencies to identify any gaps in the provision and delivery of early
support and ensure appropriate actions are taken to rectify any deficiencies
identified.
3. Health Boards must facilitate the setting up and running of Children’s Hearing
Services Working Groups and ensure that parents are active and valued
members of the Group.
4. All Health Boards should identify a named paediatrician who has responsibility for
all hearing impaired children in their area.
28
5. Health Boards must ensure that health professionals working with young hearing
impaired children and their families have appropriate knowledge and skills.
6. Health Boards have a duty to alert partner agencies if there are concerns about
any aspect of the services being delivered by these partner agencies.
6.8
Recommendations for the Scottish Executive
1. The Health Department should, together with Education Services and Social
Services, provide clear guidance on the statutory responsibilities of Health,
Education and Social Services with regard to the provision of early support and
intervention for hearing impaired children.
2. The Scottish Executive should encourage Board Child Health Commissioners to
take the lead on interagency working in order to ensure comprehensive services
are provided for hearing impaired children and their families.
3. In order to ensure consistency of approach and equality of provision the Scottish
Executive, through the Audiology Services Advisory Group, should agree a
national model for the delivery of early intervention and support.
29
Appendix A
Background Reading
Davis A, Bamford J et al 1997. A Critical Review of the Role of Neonatal Screening
in the Detection of Congenital Hearing Impairment. Health Technology Assessment
1(10)
http://www.psych-sci.manchester.ac.uk/mchas/
National Deaf Children’s Society. Guidelines for the Early Identification and
Audiological Management of Children with Hearing Loss Quality Standards in
Paediatric Audiology Vol IV. London : NDCS
NHS Quality Improvement Scotland. Pregnancy and Newborn Screening, Clinical
Standards 2005
Public Health Institute of Scotland. Needs Assessment Report on NHS Audiology
Services in Scotland. January 2003
Quality Standards in the NHS Newborn Hearing Screening Programme
30
Appendix B
Nature of audiology services required for children
The needs of children referred to audiology differ from those of adults and audiology
services must respond to these differing needs. Appointment times will be longer and
waiting times must, of necessity, be much shorter. The parents of newly diagnosed
children must have ready access to advice and support. Appointment systems
require to be flexible to take account of families’ different needs and requirements.
Children are generally more difficult to assess than adults. Paediatric audiologists
therefore require additional skills and expertise. The greatest skills are required for
the youngest children and those with complex needs. Paediatric audiologists must
also work closely with other agencies such as Education, Social Services, Speech
and Language Therapy and voluntary bodies. They must be able to work
empathetically and in partnership with parents and families of children in their care.
Children will be referred from a wide range of sources – from screening
programmes, parental concern and professional concern. Concern may centre
around hearing difficulties, speech delay, behavioural problems or delayed
developmental or educational progress.
Children requiring audiology services fall into 3 main groups 
Children with possible permanent hearing impairment requiring detailed
assessment and long-term ongoing management, including aiding, if hearing
impairment confirmed.

Children with proven or possible transient conductive hearing loss. This group
make up a considerable proportion of a paediatric audiology department
workload.

Children with developmental disorders and complex problems in whom hearing
loss as a contributory factor needs to be assessed or excluded.
All children referred to audiology should have access to audiologists with specific
paediatric training at a level required to complete an appropriate assessment. While
all Health Boards should be able to provide basic high quality paediatric audiology
assessments and ongoing care for school age children it is unrealistic to expect all
services or indeed all Boards to be able to provide every component of a specialist
paediatric service. Audiologists are in short supply, especially those with the
necessary seniority, knowledge, skills and experience for working with children.
Some Boards are too small and could not justify employing specialist staff for such a
small number of children.
31
Suggested Model for Paediatric Audiology Services in Scotland
Tertiary Centres
As you move up the triangle

increasing level of expertise
and specialised equipment
required

lower incidence conditions
mean that larger ‘catchment
population’ required to
maintain critical mass to
enable development and
maintenance of skills
HIGH QUALITY SERVICE
ESSENTIAL AT EVERY LEVEL
Highly
specialised
skills *

Regional Centres

* Including detailed diagnostic assessment
and ongoing management of

babies and very young children with
possible/confirmed sensorineural
deafness

Central auditory processing problems

Auditory dys-synchrony/neuropathy

Balance disorders
Additional expertise for
Assessment of younger
children or children with
additional needs
Management of tinnitus,
hyperacusis, non organic
hearing loss
General skills that all Boards must be able to provide including

Assessment and management of children with temporary and
chronic middle ear problems

Hearing assessments for children age 5 and over

Fitting hearing aids to older children

General care and maintenance of hearing aids

Ear mould service
All
Audiology
Departments
.
Appropriate services should be provided as close to home as possible in order to
minimise travelling for families.
The exact nature of service delivered at each level is open to discussion and will be
dependent on many factors such as the size of the population being served, level of
expertise of audiology staff, availability of appropriate equipment, the geography of
the area. If services are being provided by different audiology departments within the
one Health Board area, or being provided by one Health Board for another then it is
essential that there are written mutually agreed guidelines and protocols.
32
Appendix C
Regional Partnerships
The development of Regional Partnerships in Scotland is necessary in order to
overcome the problems caused by a chronic shortage of audiologists, in particular of
audiologists appropriately trained and experienced in the field of paediatrics, and in
order to provide the “critical mass” (of babies and young children) required to acquire
and maintain the necessary skills. Only through Regional Partnership working can
we ensure equality of provision for all hearing impaired children and their families
irrespective of their area of residence.
There are, however, real as well as perceived problems associated with this
approach.

parents may be required to travel further to access services for their children

there can be a perception among parents and professionals of a two-tier
system, with the regional centre seen as the “centre of excellence” and the
local service as “second best”

regional partnerships can potentially lead to smaller services having difficulty
in attracting and retaining staff due to perceived reduced job satisfaction and
fewer training opportunities.

communication and exchange of information are more difficult when both local
and regional teams are involved, with the potential of confusion for parents.
Nevertheless, these difficulties are not insurmountable and may be mitigated by
careful planning and full consultation with all agencies and members of both local
and regional Early Years Support Teams.
Parents are usually happy to travel for specialist services if they understand the
reasons and if appointments are flexible and take parents’ needs into account.
Children and families should be seen jointly by local and regional audiologists (and
other support staff as necessary) for early assessment and hearing aid fitting. Joint
consultation avoids duplication of appointments, improves communication between
teams and with parents, and increases parents’ confidence in those delivering the
services.
Joint appointments may be located in the family’s home area or at the regional
centre, depending on the availability of appropriate facilities, expected numbers of
children, and taking into account the needs of families and staff availability.
Communication with parents and full information exchange between local and
regional teams is crucial. Regional partnerships must be well planned and protocols
and care pathways agreed and documented by all concerned.
33
Joint consultations provide an excellent training opportunity, enhancing the
knowledge and experience of the audiologists in the smaller services and increasing
job satisfaction.
Devolving the more specialised components of a paediatric service to a regional
partner should not compromise the quality and status of the remaining services
delivered to the children. All aspects of services for children require good quality
skills and expertise and all audiology services need to develop the necessary
knowledge and ethos.
Regional Partnerships if properly planned and implemented should ensure good
quality audiology services for all children and equity of provision across all Health
Board areas.
34