BACCH News dec11 (final) - The British Academy of Childhood

dec
‘11
The Quar ter ly Newsletter of The Br itish Association for Communit y Child Health
BACCH ASM
special starts
p11
BACCHNEWS
“Child Wellbeing in the UK, Spain and Sweden”
– a report summary p11 SACCHNEWS
BACCHREGIONS
BACCHBOOKGROUP
Weight and growth faltering care
pathway p23 ASMSPECIAL
BACCHINFOMATICS
BACCHCAREPATHWAYS
BACCHNEWS
Contents and Contacts
Table of Contents
2
CONTENTS and CONTACTS
3
FROM THE EDITOR
3
CONFERENCE DIARY
4-5
BACCH is an organisation representing professionals
working in paediatrics and child health in the
community. It is a specialty group of the Royal College of
Paediatrics and Child Health.
BACCH welcomes new members!
FROM THE CHAIR
BACCH CONVENOR
The benefits of your BACCH membership include the following:
6-7
BACCH ACADEMIC CONVENOR
7-8
SSASG NEWS
1
2
3
4
5
6
7
6
8
SACCH NEWS
8
BPMHG
9
CSAC NEWS
10
BACCH REGIONS
ISABELLE ROBINSON
EXECUTIVE OFFICER
11-17 ASM SPECIAL
18
Advocacy on behalf of children everywhere
Contributing to the development of community child health in the UK
Stimulation of research/evidence-based health care
Networking - regional, national, international and online with website
Training and CME events
Quarterly BACCH News newsletter
Substantially reduced subscription to Child: Care, Health and Development the
official journal of BACCH
BACCH BOOK GROUP
19-20 BACCH INFOMATICS
Tel: 020 7092 6082
E-mail: [email protected] or [email protected]
20-23 BACCH NEWS
BACCH, BACD, CPHIG, CPSIG and BPMHG
22-24 BACCH CARE PATHWAYS
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MORE ONLINE AT www.bacch.org.uk
BACCH Newsletter Contact Information
BACCH EC Officers / Members www.bacch.org.uk/about/ec.php
Chairman
Treasurer
Convenor
Assistant Convenor
Newsletter Editor
Academic Convenor
Deputy Academic Convenor
SSASG
Specialty Training
Trainee Reps
BPMHG
BAPA
BACD
CPHIG
CPSIG
BACCH rep to RCPCH
SASG Committee
Simon Lenton
Rajiv Mittal
Lily Murtaza
Somnath Banerjee
Catherine Tuffrey
Raghu Lingam
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
Thérèse Bennett
Cliona ni Bhrolchain
Helen Brewer
Tamsin Woodbridge
Liz Didcock
Jane Lyons
Gillian Baird
Jane Ritchie
Deborah Hodes
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
Christine Arnold
[email protected]
BACCH Regional Coordinators www.bacch.org.uk/about/regional.php
2
East Anglia
Elaine Lewis
[email protected]
Mersey
Jackie Gregg
[email protected]
Northern
Nicola Cleghorn
[email protected]
North West
John Agbenu
[email protected]
N Ireland
TBA
NE Thames
Dr Sarah Luke
[email protected]
NW Thames
Reeta Gupta
[email protected]
SE Thames
Sameena Shakoor
[email protected]
SW Thames
Shade Alu
[email protected]
Oxford
Adeola Vaughan
[email protected]
South West
Richard Tomlinson
[email protected]
Trent
Vinita Kapoor
[email protected]
Wales
Nia John
[email protected]
Wessex
Valerie Shrubb
[email protected]
W Mids
Neal McCathie
[email protected]
Yorkshire
Anne Kelly
[email protected]
Scotland
Helen Gibson
[email protected]
Editor
Dr Catherine Tuffrey
E-mail: [email protected]
(Please send your submission to Catherine Tuffrey
before the next Editorial deadline date.)
Design and Print
Wyndeham Gait
Tony Corn
Tel: 01472 356158
E-mail: [email protected]
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Publishing 2012
Editorial deadline
15 February ‘12
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‘12
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‘12 15 November ‘12 Publication date
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15 Sept ‘12
15 Dec ‘12
All enquiries to the BACCH office:
[email protected]
All enquiries to the Editor
The opinions expressed in
BACCH News are those of
individual contributors, and not
necessarily of the Editor or BACCH.
December 2011
BACCHEDITORIAL
FROM THE EDITOR
CONFERENCE DIARY
As last year, this final newsletter of
the year features some highlights
and reflections from the ASM, held
in October. This year we were in
Birmingham, for a varied programme
of invited speakers and colleagues
describing their research findings
and innovative practice.
I am currently wrestling with how the service in which I work might
implement the new NICE guidelines on the diagnosis of autism in
children without spending more money, and I suspect many of you
will be doing the same. I was particularly interested therefore to hear
Janice Bothwell’s description of their overhaul of services in Belfast,
and I am delighted she agreed to write about it for the newsletter
(page 12). We are also all grappling with how we can measure
meaningful outcomes for our patients. On page 13 Nicky Harris
describes the work she and colleagues in the Southwest have done in
developing a tool for measuring what parents identify as important
for their child and how that changes with intervention.
Also featured are summaries and reflections on a number of the
workshops held at the ASM. One of the workshops I enjoyed
was that run by Mitch Blair on the Healthy Child Programme on
e-Learning for Health. The resources available through this system
are much greater than I’d realised and are potentially hugely useful
whether you are learning or teaching. I was therefore very pleased to
receive a review of the paediatric programmes from Milena Sirakova,
which you will find on page 17.
The CATCH poster prize was won by Irene Vaz for another
very practical piece of work developing sets of symbols to aid
communication with children and young people with learning
disability who are admitted to hospital or need a medical
intervention such as venepuncture. This is a great example of work
which could be used all over the country but for which reinventing
the wheel is a waste of time – so please see the poster on page 16 and
share the ideas with hospital colleagues including learning disability
nurses (for both children and adults).
Another way of preventing the reinvention of the wheel is sharing
care pathways. We have long intended in BACCH to collate
examples of care pathways and to put them on the website for
people to adapt for their local use. This work continues and we are
now going to publish some in the newsletter. Many pathways are
long and involved and we don’t have room for the full version in
the newsletter so we are including summaries and the full version
will be available on the website. This project is not possible without
you all contributing what you have done, so please send them to the
BACCH office. They don’t have to be perfect – nobody’s are, but lets
help reduce all our workloads by sharing ideas!
Many thanks to Liz Didcock and colleagues for starting the ball
rolling with some highlights from the Nottingham Growth and
Weight Faltering pathway (page 23).
For 2012, the proposed themes for the first three newsletters are
sleep; culture and its effect on child health; and education and
training. This time next year we will again reflect on the ASM.
A huge thank you to all the contributors who have written so well on
such a range of topics over the last year. I hope you all, readers and
authors, have some deserved relaxation over the festive season and a
very happy New Year to you all.
Catherine Tuffrey
[email protected]
December 2011
Dates Event
January 2012
Location
9
London
19
26-27
28
RCPCH Quality Improvement Workshop.
Pursuing Better Care: Quality Improvement
in Paediatrics and Child Health
http://www.rcpch.ac.uk/events
RCPCH update event: Paediatric Infectious
Diseases: The Future
http://www.rcpch.ac.uk/events
British Paediatric Mental Health Group
Winter Meeting
http://www.bpmhg.org.uk/wintermeeting/
British Association of Paediatricians in
Audiology: Annual London Conference
http://www.bapa.uk.com/conferences
London
Northampton
London
March 2012
23
SACCH Conference
Perth
May 2012
22-24
RCPCH Annual Conference
Glasgow
http://www.rcpch.ac.uk/events/annualconference
(The joint BACCH/YPHSIG/BPMHG
session will be on ‘Young people: Health risks,
novel solutions’)
September 2012
6-8
International Society for Social Paediatrics
and Child Health: Inaugural conference
http://www.issop2012.co.uk/
St Andrews
See also the BACCH website conference directory:
www.bacch.org.uk/conferences/conferences.php
Available with your BACCH Membership
See the journal online at:
www.interscience.wiley.com/journal/cch
The multidisciplinary journal - incorporating Ambulatory Child Health
Official journal of BACCH, Swiss Paediatric Society and ESSOP
Edited by:
Stuart Logan
ISI Impact Factor 2008: 1.154
Child: care, health and development is an
international, peer-reviewed journal which publishes
papers dealing with all aspects of the health and
development of children and young people. We aim
to attract quantitative and qualitative research papers
relevant to people from all disciplines working in child
health. We welcome studies which examine the effects
of social and environmental factors on health and
development as well as those dealing with clinical
issues, the organization of services and health policy.
We particularly encourage the submission of studies
related to those who are disadvantaged by physical,
developmental, emotional and social problems.
The journal also aims to collate important research
findings and to provide a forum for discussion of global child health issues.
For more information or to view online content visit
www.interscience.wiley.com/journal/cch
3
BACCHCHAIR
Integrated care - stop and think carefully
Responding to the RCGP consultation
on “integration of care” made me
ponder on the meaning of integrated
care for children and families. I read
the first sentence “Integration of
health and social care services has
been a theme since the outset of the
Government’s White Paper and is now
a major focus of the Health and Social
Care Bill”. I thought “I know where this
is going” – “what are the opportunities for management
integration between Local Authorities and the NHS for
the children and family functions?” So I read on. The
second paragraph introduced the WHO definition of
what integrated care means to service users:
‘For the user, integration means health care that is seamless, smooth and
easy to navigate. Users want a co-ordinated service which minimizes
both the number of stages in an appointment and the number of separate
visits required to a health facility. They want health workers to be aware
of their health as a whole (not just one clinical aspect) and for health
workers from different levels of a system to communicate well. In short,
clients want continuity of care.’
World Health Organisation (WHO)
I quickly scanned the consultation questions. The first was “What
definition of integrated care do you believe should be used to inform
policy decisions?”
At this point, I generally go back to basics and start with a plain
English definition. The Latin origin is ‘integer’ meaning “making
‘whole or entire’ in the sense of combining two things into one, or
making a group from a combination of parts”. Applying integration
to services should create “a state of combination that delivers
completeness and harmony”. Certainly a congruence there with the
World Health Organisation interpretation.
Then I did a literature search. The theoretical literature talks about
horizontal and vertical integration and of meso, macro and micro
integration reflecting integration of policy formulation, integration
at an organisational level and integration of professionals into teams
around individual families.
The more practical literature talks about levels of integration
including:
1. Organisational integration – by mergers and/or structural
change or virtually through contracts between separate
organisations
2. Functional integration – integration of non-clinical support and
back-office functions
3. Financial integration – through the use of program budgeting
for a pathway of care
4. Service integration – integration of the clinical services within
an organisation
5. Clinical integration – integration of the clinical team through
the use of shared guidelines, joint training etc
6. Normative integration – sharing values in co-ordinating work to
secure collaboration
7. Systemic integration – the coherence of rules and policies at the
various levels of organisation
8. Knowledge integration – sharing the same evidence base across
different organisations and professional groups
9. IT integration – sharing communication, data collection,
storage, analysis and dissemination strategies
10.Workforce integration – integration of workforce planning,
education and training, recruitment, retention and development
across multiple organisations
11.Governance integration – integration of governance systems
across different organisations
4
Of course, many of these practical aspects of integration have already
happened, but to varying degrees both within the NHS and with
other organisations that contribute services for children and families.
The potential value of integrated care from the perspective of
both users of services and providers of services is repeatedly and
consistently endorsed in the literature – with a particular emphasis
on timeliness, coordination (at one point in time) and continuity
(over a period of time).
At about this point I realised that true integration was not about
management mergers or reorganisations, but about creating
integration on a whole system basis that works for the benefit
of children and families. It is about ‘creating completeness and
harmony’ between all the parts that contribute to safety, good
experience and outcomes for families.
This is very much in line with the child friendly healthcare guidelines
which are part of the Council of Europe strategy “Building a Europe
for and with Children”. This has recently been endorsed by Health
Ministers representing the 47 nations of the Council of Europe
and the next stage is adoption and adaption within their various
healthcare systems.
The programme’s main objective is to help decision-makers
and stakeholders involved in the design and implementation of
national strategies for the protection of children’s rights and the
prevention of violence against children. Child friendly health care
brings together the values enshrined in the UN Convention on the
Rights of the Child (UNCRC), with systems thinking and evidence,
into a practical framework based on pathways and networks, to aid
the planning, delivery and regulation of services for children and
families.
The child friendly healthcare approach recognises the importance of
creating alignment and collaboration between different parts of the
system. In times of economic austerity it becomes increasingly vital
for all the stakeholders to contribute to ‘adding value’ within the
system including:
••
••
••
••
users, providers and planners
public, private and voluntary sector providers
primary, secondary and tertiary care
health, education, social care and parts of other systems such
as criminal justice
•• government departments responsible for health, education,
social care and other sectors
Patients, providers and planners/policy-makers therefore all want a
system where all parts are in place and working well together, which
makes maximum use of resources and which is sustainable and can
adapt, evolve and improve over time. Or, in other words, a system of
truly integrated care.
The child friendly health care approach is an integrated model of
service delivery that enables all the stakeholders to clarify their
roles and responsibilities in relationship to pathways, in order to
achieve shared outcomes. The adoption of the same values derived
from UNCRC, across different organisations creates an integrated
culture that reduces fragmentation and improves coordination and
continuity. The concept is best illustrated with a diagram showing
how the component parts come together.
The triangle on the left represents the needs of the child, their family
and the community in which they live. On the right hand side the
triangle represents the outcomes – in general terms we expect services
to improve health, reduce inequalities and be sustainable within the
available resources. The component parts for a short-term condition
December 2011
BACCHCHAIR
Short term condition pathway
Needs
The two main drivers for change in existing systems arise from
achieving alignment through a shared approach (which could be
called cultural integration) and creating measurement systems and
feedback loops to support the twin processes of continuous quality
improvement and learning.
Surgical
Condition
Medical
Psychiatric
Promotion
Screening
Child
Prevention
Recognition
Assessment
Interventions
Protection
Concern
Family
Social
Outcomes
Health
Child
Community
Family
Educational
Equity
Sustainable
Community
Behavioural
(STC) pathway include prevention, recognition, assessment and
interventions, each of which can be delivered in a different way
depending on circumstances. It is also important to remember
that families and services live and work in a wider community that
may help or hinder the achievement of these outcomes so tackling
lifestyles and determinants of health should not be forgotten.
From a patient/user perspective they have a “journey” through
services which should be safe to deliver the outcomes they want, in
a way that is experienced as a ‘user friendly’ or a ‘quality’ service.
From a service provider perspective, groups of journeys are called
“pathways” where the parts are delivered by teams of individuals
who work well together and strive to improve the service they
deliver. Finally from the perspective of a service planner they want
a “network” of services which cover a number of pathways with no
unnecessary waste (neither omissions/duplications nor unintended
consequences) which continuously adds value to the invested
resources.
This short-term condition pathway is also the initial phase of a longterm condition (LTC) pathway. In a LTC pathway, the same four
components are relevant, but this time the emphasis is on preventing,
recognising, assessing and managing the secondary complications
of the primary condition. This is called the review phase. Finally
there is a transition phase which may be on into adult services,
rehabilitation back to normality or for a minority into palliative care
services.
Transition
phase
Needs
Child
Family
Community
Outcomes
Effectiveness
Efficiency
Equity
Assessment
Interventions
Each component of a pathway should be based on best evidence,
delivered by trained and competent practitioners, in the right place,
at the right time with the necessary support services in place, for
example, administrative and IT systems, investigative services and
measurement/improvement programmes.
This “whole systems” approach erodes boundaries and reduces
fragmentation between primary, secondary and tertiary health
services and between health, education and social care. What is
important is the delivery of any component part of the pathway in a
way that relates to what has happened before and what will happen
next – in effect making a ‘wholesome journey’ from the sum of the
parts. This is true integration from a user’s perspective.
December 2011
Simon Lenton
[email protected]
References
Kodner, D. (2009). All together now: A conceptual exploration of
integrated care, Healthcare Quarterly, volume 10, November.
Review
Cyclical
pathway
review
Recognition
So, in my opinion, management mergers are the endpoint, rather
than the starting point of an integration process that should begin
with shared organisational values, evidence and outcomes driving
a system where all the parts of the pathway are in place and the
teams in the network work and learn to improve together. So many
management reorganisations take at least two years to function, do
not deliver the expected improvements, often result in considerable
organisational memory loss as senior people are made redundant
and the financial savings are minimal. NHS and Local Authority
management mergers are not the immediate answer to integration
which should be about bringing teams together to facilitate patient
journeys through a complex system.
World Health Organisation. Integrated health services – what and why?
Technical Brief No.1. Geneva: WHO, 2008.
Review
phase
Prevention
Then, using the child friendly health care approach, start talking to
the other teams and agencies about how you can ensure all the parts
are in place and working well together.
RCGP Integration of Care Consultation Paper. 2011
Long term condition pathway
Initial
phase
The challenge now is to take this forward particularly in a period
of economic austerity. Do you sometimes see school aged children
without the relevant information from education? Do you come
across gaps in provision? Do you sometimes arrange another
appointment when a telephone conversation may be enough? Do
you find yourself “working around” another agency’s “rules”? If so,
it’s time for you to think about how the whole system works from the
perspective of the family. If not, start asking families what works, and
what does not, from their perspective (you may be surprised!).
Suter, E., Oelke, N., Adair, C. et al. (2007). Health systems integration.
Definitions, processes & impact: A research synthesis. Calgary, AB:
Health Systems & Workforce Research Unit, Calgary Health Region.
Available at:
http://www.calgaryhealthregion.ca/hswru/documents/projects/
HealthSystemsintegration_Jun13.htm.
Council of Europe. Child friendly health care guidelines. 2011.
http://www.coe.int/t/dg3/health/Guidelines_on_child_friendly_health_
care__English_version_.pdf
BACCH Position Paper on the integration of services for children and
families. Expected December 2011.
5
BACCHCONVENOR
BACCHACADEMICCONVENOR
Health and Social Care
Bill in England – update
From the Past Academic Convenor
At the time of writing this Bill is going
through the Committee stage in
the House of Lords where possible
amendments are being discussed.
BACCH, along with other organisations
working with children, remains
concerned about the effects the Bill may
have on services for children.
Although children represent a fifth of the population and so many
adult physical and mental health problems have their roots in
childhood, the Bill does not refer to their needs. We have contributed
to a joint statement to the Lords through the National Children’s
Bureau which calls for:
•• Children’s health to be given the priority it deserves
through the Secretary of State’s ‘mandate’; the NHS
Commissioning Board taking a lead role in championing
the specific needs of children and young people, particularly
those with complex needs; and government making a
clear statement as to how the revised reforms will deliver
improvements in services for children and young people.
•• Children and young people to be given a voice in the new
health system in decisions about local services and their own
healthcare through Local HealthWatch.
•• A framework for integration of services for children
nationally through the NHS Commissioning Board and
locally through Health and Wellbeing Boards, to include
arrangements for Safeguarding and Looked After Children
as well as transition, where Clinical Commissioning Groups
cross Local Authority boundaries.
BACCH has also responded to the Future Forum Phase 2. This
response and the full multisector joint statement for the Lords can
found on the BACCH website.
Vacancies in Executive Committee and Council
The EC proposal that the Convenor and Assistant Convenor posts
both run for two years, with the Assistant Convenor automatically
becoming Convenor after this time, was endorsed at the AGM in
Birmingham with the proviso that the title of Assistant Convenor be
changed to Convenor-elect.
Two applications have been received for the post of Convenor,
and five applications for the two Trainee Representatives positions.
Elections are therefore being held. All members will be contacted
before Christmas with details on how to vote. If you do not receive
an email or letter from BACCH by 21 December, please let the
office know ([email protected]). The results of the election will be
circulated as soon as we know them.
We still need applicants for Deputy Academic Convenor for the
Executive Committee, and Regional Coordinators for: Mersey and
Cheshire, Thames SW, Wessex, Yorkshire, East Anglia and Northern
Ireland, where the present post holders have served their term. See
the BACCH website for further details (www.bacch.org.uk/committees/
Nominations.htm).
I wish you all a happy and peaceful Christmas and New Year.
Lily Murtaza
[email protected]
6
Feedback from the ASM
Thank you to everyone who took the
trouble to complete the feedback
survey for our Annual Scientific
Meeting in October. Feedback
was overwhelmingly positive. Aston
Conference Centre was a great
venue and many of you have asked
to return there next year. This is on the cards but as it
costs more than previous venues the conference rates
may increase. We do aim to make a small profit on the
ASM, which helps to keep membership rates low. The
other consideration is whether the conference moves
around the UK to give more people the opportunity to
attend.
More than 95% respondents rated the format of the event good
or excellent, with similar ratings for all our keynote lectures. The
standard of the free papers and personal practice presentations was
extremely high and the judges had a very hard task to decide on the
prize winners. Many people were disappointed that we scheduled the
important debate on the future of community child health for the
last session. It is always a hard call to fill the last slot – we had hoped
this would be sufficiently enticing for people to plan to stay until
the end and those who did were well rewarded. More pre-conference
information particularly about the workshops is a good suggestion so
that people can sign up in advance. All the workshops were very well
received, although inevitably some were more popular than others.
The star of the conference was undoubtedly Eileen Munro. Looking
at systems theory but keeping the focus on improving outcomes,
much of what she said could be applied to the management culture
in the Health Service. The obsession with processes and bureaucracy
“it hasn’t happened until it’s recorded on the computer” and the
weight given to meeting targets all engender a feeling of lack of trust
in the workers. She spoke of changing from a system that tries to
eliminate risk by managing it, to accepting one that is “risk sensible”
with a shared set of risk principles. She gave the example of a train
running predictably on the track whereas in reality the service is
more like a ship being buffered by the wind and waves. It may not
go in a straight line but hopefully goes in the right general direction.
From time to time the ship is blown off course and needs to get its
bearings again – so good feedback from staff is essential to get back
on course.
I hope that the solutions offered by Professor Munro will be acted
on so that we will see an increase in professional expertise amongst
social workers in the field. As well as a change in the career structure
for social workers there will need to be a change to a culture
which values and respects those people brave enough to work with
uncertainty in such a high risk field.
Finally, I would like to thank Kelly Robinson, Isabelle Robinson and
Julia Wheal, without whom the conference would not have happened
and who should take the credit particularly for the smooth handover
in the summer from Kelly to Isabelle. Raghu Lingam has now taken
over as Academic Convenor and I wish him every success organising
next year’s conference.
Angela Moore
[email protected]
December 2011
BACCHACADEMICCONVENOR
From the New Academic Convenor
Dear colleagues,
It is my great pleasure as the new
BACCH Academic convenor
to highlight a few academic
opportunities in the coming months.
For the 2012 Royal College of Paediatrics and Child Health meeting
we are holding a joint session with the British Mental Health group
and Young Persons Health Special Interest Group. This year, the
session will be entitled ‘Young people: health risks, novel solutions’ in
line with the WHO emphasis on the views of young people on their
health and evidence based practice to aid this.
The session will be held on Tuesday 22 May 2012.
Also of interest I’m sure will be the ESSOP annual conference in St
Andrew to be held next year from the 5–8 Sept 2012: Evidence based
practice, evidence based advocacy.
Raghu Lingam
[email protected]
SSASGNews
Hello again!
In this article I provide a synopsis
of relevant sessions from the ASM
in October, with web-based
references so that you can read
more about the issues.
Informal lunchtime meeting
Many thanks to everyone who came to the informal lunchtime
meeting on Wednesday 12th October. In all there were 36 of us
present and I hope everyone felt that they were able to have their say.
It was brilliant that Jane Wilkinson, Chair of the RCPCH SSASG
Committee, was available to address us on “What’s happening
for SSASG at RCPCH”. On the College website (www.rcpch.
ac.uk), scroll down to the bottom of the page, click on ‘RCPCH
Committees’ and then on ‘SSASG Committee’, you will see the
remit of this committee. Jane assured us that the College recognises
and values the contribution made to paediatrics by SSASGs and that
there is commitment to provide opportunities for career progression.
She told us that members of the SSASG committee sit on other
College committees including Revalidation, Membership and
Training and that she, as Chair, sits on the College Council. She also
told us that the Academy of Medical Royal Colleges now has an SAS
committee.
Jane described the four areas of work that the College SSASG
committee is currently involved in:
1. SSASG career development and the role of the new SSASG
member on CCH CSAC
2. Facing the Future and CCH standards
3. SSASG Survey
4. CESR anomaly
December 2011
1. SSASG career development and the role of the
new SSASG member on CCH CSAC
With the 2008 new contract there was recognition that doctors
entering the SSAS Grades did so only partly trained and should
have the opportunity to gain further training which was beyond
and in addition to maintaining skills (i.e. continuing professional
development). Jane stressed that the College values SSASG
paediatricians. She reminded us that Christine Arnold, BACCH
representative on the RCPCH Committee, has been co-opted
to the community College Specialty Advisory Committee
(CSAC). I am hoping that Christine will be able to update us
in a future newsletter about this new role and I am aware that
she is interested in CSAC providing guidance on education
and training for all community SSASGs whatever their career
aspirations.
2. Facing the Future and CCH standards
Facing the Future (FtF) is the RCPCH publication of December
2010, which outlined 10 minimum standards for acute, general
paediatric care. This was followed, in April of this year, by a
Review of Paediatric Services in which the 10 standards were
mapped against current acute service provision and found to be
inadequate. FtF then goes on to make a number of proposals,
for possible solutions, including workforce proposals and
concluded that in order to “deliver safe and sustainable services
there would need to be an expansion in the number of consultants”
and recommended “the increased involvement of children’s nurses
and GP trainees in some aspects of care”. In FtF it is stated that
“a significant number of consultant-level posts are currently filled
by SSASG doctors. Whilst data on exact numbers are not currently
available these individuals form an important part of the workforce
and will continue to do so for a considerable time into the future”.
(http://www.rcpch.ac.uk/facingthefuture).
With regard to Community Child Health Jane told us that FtF
also anticipated the need for an expansion in the number of
paediatricians working in community services and that there is
currently a draft standard for community child health services
documentation. Jane told us that the SSASG committee was in
the process of taking forward a response to FtF and no doubt we
will hear more about this in due course.
3. SSASG Survey
The SSASG Committee has put together this anonymous online
survey, which all SSASGs are invited to complete. The reason for
the survey is to capture our views and opinions and use these to
influence discussions around SSASG career development both
now and in the future. You do not need to be a member of either
BACCH or RCPCH to be eligible to complete this survey and it
should only take a few minutes of your time. So please complete
it, and pass on the word to encourage other SSASGs whom you
know to also complete it.
The survey can be found at: www.surveymonkey.com/s/QZFJ8RJ.
There are also links via the RCPCH and BACCH websites:
www.rcpch.ac.uk and www.bacch.org.uk.
4. Certificate of Eligibility for Specialist
Registration (CESR) anomaly
The CESR anomaly in a non-CCT† specialty refers to the
wording on the GMC register (http://www.gmc-uk.org/doctors/
abouteligibility.asp) which permits CESR application for overseas
trained or qualified sub-specialty doctors but blocks it for
UK trained doctors! Jane told us that College is aware of this
legislative anomaly and has sought support from the Academy
of Medical Royal Colleges and is prepared to lobby the GMC to
change the legislation.
†Certificate of Completion of Training.
Continues overleaf
7
SSASGNews
SACCHNews
The two workshops
inviting expressions of interest from groups or individuals keen to
share their experience (contact me informally in the first instance on
[email protected]).
There were two back-to-back workshops on training and
development relevant to SSASGs. The first entitled “Demonstrating
competence and performance: what’s available?” reviewed the
training programme and curriculum documents for CCH and
highlighted the four key areas of: Child public health; Behavioural
paediatrics; Safeguarding including LAC and adoption; and
Neurodisability (cf. http://www.rcpch.ac.uk/training-examinationsprofessional-development/quality-training/curriculum/curriculum).
A web-based Resource Pack was introduced, its aim being to provide
a range of resources to develop competencies and demonstrate that
these competencies have been achieved. Although at present it is
aimed at trainees, it does contain useful information for SSASGs and
of course it is important for SSASGs to be informed, since many of
us provide educational supervision. This resource is likely to become
accessible via the BACCH or RCPCH websites in due course.
The second workshop entitled “Masterclass: making best use of
the e-portfolio” provided information about the ways in which
competencies are demonstrated, for example WBA (Work Based
Assessment) using ASSET (Assessment Services for Education and
Training), the online facility used by the College to administer WBA
and the e-portfolio. The e-portfolio, which is mandatory for specialty
trainees, is also likely to be of use to SSASGs. The main advantage
of this web-based tool is that it facilitates recording of evidence
of experience, courses attended and competencies. Educational
supervisors have access to shared parts of the portfolio and are
responsible for signing off competency records, appraisal outcomes
etc. In order to use either ASSET or the e-portfolio it is necessary to
be registered with the College.
In conclusion
There was a lot of information arising from the ASM events and I am
more than happy for you to get in touch with me about anything I
have written in this article.
Thérèse Bennett – SSASG representative
[email protected]
SACCHNews
Scottish Association for
Community Child Health (SACCH)
Planning is well under way for the 2012
SACCH Conference on the topic of the
relationship between Community and
General Paediatrics. It will be held on
Friday 23 rd March 2012 at Perth Concert
Hall.
Speakers include Dr Kate McKay, National Clinical Lead for
Children and Young Person’s Services and Dr Cliona Ni Bhrolchain
who will talk on the College Specialty Advisory Committee’s job
description guidelines for Integrated General and Community
Consultant Posts and training in Community Paediatrics. There
will be a personal practice session reflecting how Paediatricians and
services are responding to the challenges facing Community Child
Health and this will also be looking at services at the interface
between General and Community Paediatrics. SACCH is currently
8
As always there will be a call for abstracts of original research or
audits in the field of Community Child Health in January for the
two SACCH prizes – the Alison Kerr prize for SSASG paediatricians
and the Patricia Jackson prize for trainees. In keeping with the theme
of the Conference, SACCH would also welcome submissions from
doctors working in General Paediatrics if their projects encompass
some aspect of Community Child Health.
Helen Gibson – chair SACCH
[email protected]
BPMHGNews
I would like, on behalf of the British Paediatric
Mental Health Group, to invite you to our winter
meeting this year.
The meeting will be held on the 26th and 27th January 2012, at
Highgate House, Creaton, Near Northampton.
As always, the conference will be a two-day, residential event: you
will find a uniquely supportive and collaborative atmosphere, as well
as fascinating talks and workshops.
On Thursday 26th January, we have a small-group day, looking in
depth at issues around mental health in paediatrics, including:
•• Breaking the cycle: mental health down the generations
•• Psychodynamic concepts in paediatrics
•• YOUR problems discussed by a sympathetic and experienced
peer group
On Thursday evening Professor Elena Geralda will talk to us about
mental health in paediatric clinic, prior to our ever-excellent annual
dinner.
On Friday 27th January, we turn to “What every paediatrician
needs to know about mental health”. This day, held jointly with the
British Association of General Paediatrics, includes the following
topics:
••
••
••
••
Early identification and management of suspected FII
Managing mental health difficulties in Paediatric OPD
Managing the difficult child on the paediatric ward
Pain management: The NICE approach
Please go to www.bpmhg.org.uk to download an application form. We
offer a flexible pricing policy (pay for what you attend) and generous
trainee discounts.
Finally, the conference coffee is uncommonly fine!
Max Davie, Academic Convenor
December 2011
CSACNews
Report from the Chair of the College Specialty Advisory Committee
I am glad to report back on the
exercise to identify community
child health (CCH) trainees and
leads trainers in each deanery.
Thanks to the Heads of School
and the deanery administrators in
this task.
CCH training leads
I was delighted to find that 17/20 deaneries already had a training
lead for CCH. Since our initial discussion with the Heads of School,
two deaneries have already identified a lead, leaving only one deanery
without one. Martyn Clark (RCPCH Education & Training Support
Manager) will be contacting the last Head of School to discuss this
once the recent appointee has settled in!
Gabrielle Laing, Lara Smith and Charlotte McAuley. The trainees
who have seen it have been very complimentary and see it as a really
useful resource to support their training. The intention is to convert
this PDF file into an interactive Web-based resource that allows
people to post additional resources through a moderated process. A
prototype website is available at www.CommunityChildHealth.co.uk.
All credit for the website should go to Hamilton Grantham, who
worked with us in Wirral for a year but who is currently working
at Alder Hey. We would welcome any comments or indeed any
further offers of resources. Please contact myself, Charlotte (charlotte.
[email protected]) or for comments on the website, contact
Hamilton ([email protected]).
Deanery
CCH lead for
training? Y/N
No. of
trainees
Northern Deanery
Y
12
London Deanery A
Y
London Deanery B
Y
Severn Deanery
Y
8
Mersey Deanery
Y
8
Wales Deanery
Y
7
North Western Deanery
Y
7
Oxford Deanery
Y
7
East Midlands
Deanery (North)
Y
4
West Midlands Deanery
Y
4
Northern Ireland
Y
3
Yorkshire and Humber
Deanery
Y
2
Martyn and I were extremely disappointed to hear several trainees at
the trainees meeting at the BACCH ASM describe negative responses
when they indicated they intended to subspecialise in community
child health. They reported questions such as ‘Why would you want
to do that?’ and remarks like ‘You’re too bright to do community’. I
had hoped those days had gone but it is clearly not so. I do hope we
can move on from this negativity.
Scotland (West)
Y
2
Scotland (East)
Y
1
Wessex Deanery
Y
1
SW Peninsula Deanery
Y
1
East of England Deanery
Y
?none
We are now planning to work with the identified leads and the
deaneries to develop this role including what exactly the job should
be; what the job description should look like and the likely time
requirement to fulfil the job.
Scotland (S East)
N
?1
East Midlands
Deanery (South)
Y
? Kent, Surrey and Sussex
Deanery (KSS)
Y
Currently
included in
London figs
Scotland (North/N East)
Y
?
CCH trainees
So far, 17/20 deaneries have been able to send us a list of those they
believe to be training in CCH. At this stage we are still cleaning up
the data. Some identified CCH trainees appear on other subspecialty
lists e.g. paediatric neurodisability and child mental health. I presume
they started as CCH trainees but subsequently decided to apply to
more specialist areas. We have also found some who have already
moved into consultant posts and indeed a few names that Martyn
cannot identify as trainees at all!
Nevertheless the table below shows we have close to 80 trainees
already identified as training in CCH and we still have three
deaneries to submit information. The spreadsheet shows an
interesting variation between deaneries, with some deaneries
supporting a considerable number of trainees while others have only
one. It might be interesting to explore through trainee questionnaires
in the future what lies behind these differences.
We would like to arrange a training event in the spring for all the
leads we have identified to discuss the role and also to provide
specific training for the leads on training requirements and CCT
applications; training on the use of workplace-based assessments and
the portfolio; and working with the leads on how we might improve
recruitment to CCH.
Training resource pack
You may already have seen in the November e-bulletin that a draft
training resource pack is now available on the BACCH website at:
http://www.bacch.org.uk/training/training_packs.php. I am extremely
grateful to everyone who has contributed to this, particularly
December 2011
Total
9
76
Table of Deanery Leads and trainee numbers.
Cliona Ni Bhrolchain
[email protected]
9
BACCHREGIONS
SE THAMES
The BACCH South East Thames Regional
conference, which took place on 9th
of November, was more popular and
successful than ever. We had over 60
delegates, attracted by the superb
calibre of speakers.
Dr Hilary Cass, Consultant in Paediatric Disability and President Elect
of the Royal College of Paediatrics and Child Health, spoke about the
often unrecognised overlap between neurodisability and palliative care.
Dr Caroline Ogilvy, Consultant Scientist from Guys, enlightened us on
the latest molecular techniques for genetic testing, and made a complex
subject clear and straightforward. Francis Wardell, Research Associate from
Newcastle updated us on the ASD-UK national pilot and recruitment to the
database. Finally Dr Paramala Santosh, Honorary Reader and Consultant in
Child and Adolescent Psychiatry gave a masterclass on how to do a thorough
and comprehensive assessment, to distinguish between co-morbidities in
children presenting with neurodevelopmental disorders, as well as recent
psychopharmacological advances. Their presentations should be available on
the BACCH website.
I have reached the end of my 4 year tenure as BACCH SE Thames Regional
co-ordinator and am delighted to be handing over to Dr Georgie Siggers,
Consultant Paediatrician in Lewisham Healthcare NHS Trust. I have
been appointed to the role of British Association of Childhood Disability
SE Thames regional co-ordinator, and maybe next year we can do a joint
conference.
Sameena Shakoor
[email protected]
NORTH WEST
Another year is coming to an end
and it is time to reflect on the last 12
months. Many of us in the North West
are facing turbulent times with cuts and
changes to service configurations.
Annual London Conference
27th January 2012
SOAS, Brunei Gallery, Thornhaugh Street,
Russell Square, London WC1 0XG
Registration
9.30
Morning Session: 9.55
Chair: TBC
Introduction and Housekeeping
10.00
Long term outcomes of NBHS
Professor Colin Kennedy
Professor in Neurology and Paediatrics
University of Southampton
10.40
Cochlear Amplification and stereocilia function
Professor Jonathon Ashmore
Bernard Katz Professor of Biophysics,
UCL Ear Inst, London
11.20
Coffee and Exhibition
11.40
Immunology and the middle ear
Dr Andrew Riordan
Consultant Immunologist
Alder Hey Children’s Hospital, Liverpool
12.10
Cholesteatoma
Mr Matthew Clark
Consultant ENT Surgeon Gloucester
Down Syndrome: an ENT perspective
This has been reflected in discussions I have had with colleagues and in
requests to email colleagues about issues community pediatricians face
across the region. Examples include the threat to special school clinics or the
changing input from the education sector to child development teams. In
order to discuss these issues effectively I find it very helpful to correspond
with a network of district BACCH contacts who kindly contribute to email
discussions and disseminate information to their colleagues locally. However
if you don’t get email through your local BACCH contact please let me
know.
One further point on people’s minds is community paediatric training and
how to ensure consistency in the face of EWTD and I am currently asking
the districts to feed back on their experience. On a positive note I have
repeated a trainees’ survey within the North West earlier this year. This
suggested not only quite good exposure to community training for all higher
paediatric trainees but also a higher number of trainees who want to train in
community paediatrics compared to three years ago.
Finally we look back to a very successful regional BACCH meeting in spring
which was hosted in Blackpool and jointly run with BACD and CPSIG.
We enjoyed various excellent presentations ranging from a talk on the
Munro report to presentations on sleep disorders. I am grateful to Dr Megan
Thomas and Dr Diana Jellinek who put the programme together as well as
speakers and all the participants who contributed to the lively discussions.
We are about to plan for next year’s meeting behind the scenes and it would
be nice if you can “make” it. Further details to follow.
John Agbenu
[email protected]
10
12.40
Mr Patrick Sheehan,
Consultant ENT Surgeon, Manchester
13.00
LUNCH Posters and Exhibition
13.45
BAPA AGM
Afternoon session: Chair: Adrian Dighe
14.30
Introduction
14.30
Let’s debate Auditory Neuropathy Spectrum Disorder
Panel:
Glynnis Parker, Lise Henderson,
Amy Stephens, Devyanee Bele
A selection of questions will be considered and discussed
by the panel.
16.30
Close of Meeting
For further information and registration:Please see BAPA website
www.bapa.uk.com/news
Telephone Pam Williams 01619628915
or email [email protected]
December 2011
BACCHASM
Investing in the Future: size matters
Of the many excellent keynote
lectures at the ASM this year, two had
particular relevance for child public
health and health inequalities. Dr Philip
Wilson, GP and senior lecturer in infant
mental health at Glasgow University
and our own Professor Mitch Blair,
both gave very clear messages about
investing in children.
Phil Wilson focused on research in conduct disorder and mentioned
the seminal paper of Heckman and Masterov, US professors of
economics who produced ‘The Productivity Argument for Investing
in Young Children’ in April 2007. They made the case that early
intervention in the lives of disadvantaged children, is not just an issue
of fairness or social justice, but one of productivity and economic
benefits for the whole of society.
Mitch Blair gave us a comprehensive exposition of the size of the
problem, the neurophysiological basis to the ‘new morbidity’, the
costs, the economic argument for investing in children and the
evidenced based approach to early intervention.
The fact that we do not do so well in nurturing wellbeing in children
in the UK, compared to other European countries is laid out in the
UNICEF report , which Mitch recommended – ‘Child Wellbeing
in the UK, Spain and Sweden: The role of inequality and
materialism’, June 2011.
Following UNICEF’s findings in 2007, putting the UK at the
bottom of the child well-being league table, UNICEF UK
commissioned the social research unit, Ipsos MORI and Dr. Agnes
Nairn to undertake qualitative research, to get behind the statistics
and understand why; exploring also what happens in Spain and
Sweden, countries where child well-being is higher. The comparator
countries were chosen because, while the UK scored 18th out of 21
OECD countries for material wellbeing (relative income poverty,
no employed adult in the household, and children’s reported
deprivation), including having one of the largest gaps between rich
and poor, Sweden was ranked first for material wellbeing and 7th for
subjective wellbeing, while Spain came 12th for material wellbeing
but had the second highest rating for subjective wellbeing.
The working definition of well-being was taken from the Department
of Health’s New Horizons strategy:
‘a positive state of mind and body, feeling safe and able to
cope, with a sense of connection with people, communities
and the wider environment’.
The methodology was designed to explore children’s lived
experience of inequality and materialism, and the link between
these two phenomena and well-being, and involved two phases,
an ethnographic phase focusing on the family, and a second of
in-school discussion groups with children. The starting point was
asking children what for them, made a good day and a bad day. 250
children (aged 8-9, and 11-12 years) from schools in different regions
in each country were involved. There was representation of children
from affluent, poor and mixed (both affluent and poor) communities
as well as disabled children. They were referred by the schools in
friendship groups, so they would be less inhibited. The information
obtained from adults was revealing, particularly with regard to UK
parents.
Findings were that the child’s view, across all three countries, and in
different social groupings was consistent. What constitutes a ‘good
December 2011
day’ for children is: time with those they love (friends, family and
even pets); creative or sporting activities; being outdoors and having
fun. There was a distinct lack of material possessions in children’s
descriptions of a good day; it was people and not things that made
them happy.
There were stark contrasts in the UK compared to the other two
countries, with parents here appearing to face greater pressures on
their time, particularly. It was also noticeable that the family roles,
boundaries and expectations that governed family life, were more
clearly defined in Spain and Sweden, than in the UK. Rules and
roles differed to the extent that ‘childhood seemed to have different
cultural meanings in the three countries’; in Sweden it is preparation
for a responsible adulthood; in Spain a cherished special time – the
role of children being mainly to learn; in the UK, rules and roles are
less clear and children “are often left to their own devices”.
Children had an awareness of inequality. They also had a concept of
waiting for things they wanted, as otherwise they would be ‘spoiled’,
a trait that was universally derided. They did not see material
possessions as essential to wellbeing, the only exception being poor
children in the UK who use brands to cover up social exclusion.
Some UK parents admitted to concerns about their children being
bullied or ostracised if they did not have the latest brands. ‘UK
parents seemed to find themselves under pressure to purchase a
surfeit of material goods’ while ‘compulsive consumption was almost
completely absent in Spain and Sweden’.
So pressure on parental time, often, but not always, associated
with low income, and consumerism, which, for parents, may be
compensatory, seem to be the main drivers pushing UK children to
the bottom of the wellbeing league. The UK having the highest levels
of inequality is also significant and underpins these disappointing
findings. One clear effect of inequality seen here is the difficult access
for poor children to creative, sporting or outdoor activities, (which
affluent parents buy for their children) resulting in a more sedentary
and disconnected lifestyle.
Recommendations are made with regard to ‘Time’, with flexible
working policies, parental leave, and adopting the ‘Living wage’.
There is a call to Government to drive forward the commitment
to eradicate child poverty, and recommendations with regard to
‘Materialism’ (commercialisation, advertising standards), and for
‘Activities’ to be accessible for poor children.
In another report commended by Mitch, ‘Backing the Future: why
investing in children is good for us all’ from Action for Children
and new economics foundation (nef ) I found this comment in
the foreword by Claire Tickell, CEO of Action for Children, which
perhaps sums it up:
“The belief that a child is lucky to live in the UK, with its
relative wealth and proud history of public services, has been
fundamentally challenged in recent years”.
A challenge for us all.
Jane Ritchie,
Co-Chair of CPHIG and RCPCH rep on AoMRC Health
Inequalities Forum
[email protected]
Continues overleaf 11
BACCHASM
Developing a
New Approach
to Autism
Assessment
depending on child and team approach. Parents reviewed the report
and recommendations, onward referrals were agreed before the
report was released. Consent to share information was obtained.
Children who were given a diagnosis of an autistic spectrum
disorder by teams not including a paediatrician were referred to a
consultant paediatrician for a medical assessment once their initial
autism assessment was completed.
(See Figure 1 Autism Assessment Service)
Introduction
In November 2010 Belfast Trust had an autism service which
was unable to meet demand. Two hundred and ninety eight
children were waiting in excess of 13 weeks, the longest waiting
15 months for assessment. Difficulties included separate waiting
lists, assessment variation across legacy trust sites and insufficient
diagnostic capacity within a consultant-delivered service.
The Trust was tasked with developing a recovery plan to address the
waiting list and at the same time used to opportunity to centralise,
redesign and modernise the service with limited extra funding was
available to address these issues(1). It was essential that the quality
of assessment was not compromised, and was benchmarked against
regional and national guidelines(2 -4). An evaluation of the service
was undertaken during the remodelling process.
Referral received by AAS
ReAuest for Bduca4onal informa4on
Speech & Language/
Paediatrician
Referral Triage by > Au4sm Prac44oners
Returned to Referrer as unsuitable for AAS
Referral accepted and triage to specific team members
ReAuest for informa4on from all professionals involved with child
Speech & Language/Clinical Psychology or CAMHS
Speech & Language/ Iccupa4onal Therapist
Clinical Assessment – ,eurodevelopmental history completed with parent and Au4sm Diagnos4c Ibserva4onal Schedule completed with child.
Description of Service
Initial steps taken included harmonizing waiting lists across
Trust, agreeing referral criteria for the Autism Assessment Service
(AAS) and designing a new referral form. The latter was felt to
be crucial to ensure that sufficient information was available on
each child to allow a decision to be made as to whether the referral
was appropriate for the AAS. Each referral was triaged by two
experienced autism practitioners. Appointments were partially
booked by a dedicated administration team.
The model for assessment was based upon the skill mix of
experienced multi-professional teams totalling seventeen staff
including paediatricians, Speech and Language therapists (SLT),
Occupational therapists (OT) and child psychology/psychiatry staff.
All professionals in the teams were trained in the use of Autism
Diagnostic Observational Schedule (ADOS) and were experienced
in the assessment of children/young person with autism. The three
main teams identified were SLT/Paediatrician, SLT/OT and SLT/
Clinical Psychology or CAMHS. Children were triaged to a specific
team based on agreed referral criteria. Four full-time SLT, paired
with one other professional, facilitated an increase in capacity from
18 to 80 diagnostic slots monthly for the duration of an estimated 5
month recovery plan period. Diagnostic slots were reduced to 40 per
month once the recovery plan had finished in order to accommodate
estimated new and potential review assessments.
Assessments were clinic based and included a comprehensive
neuro-developmental history completed with parent/carer by one
professional and the ADOS completed with the child by the other
professional (usually SLT). Liaison with education and educational
psychology was undertaken where the child/young person attended
an educational institution. Other professionals involved with the
child were also contacted. When indicated direct observation in
school/nursery were undertaken by SLT (for example if history given
by parent and clinical observations differed). Once an assessment
was completed the team members considered the presentation of
the child/young person against the ICD 10 criteria for Autism/
Asperger’s syndrome. A decision was made as to whether the
child fulfilled the diagnostic criteria, required a timely review, or
that alternate or no diagnosis should be considered. A diagnostic
report was generated and agreed by both professionals. A feedback
appointment was arranged with parents to discuss the assessment,
outcome and recommendations. Appointment length varied from
30 to 60 minutes and was completed by one or both team members
12
Lnforma4on from educa4on
Lnforma4on from other professionals
Mul4disciplinary discussion – school/nursery observa4ons organised if further informa4on needed.
Parent feedback
ASD diagnosis
ASD not evident – discharge or onward referral
Timely review indicated Medical eNamina4on
Au4sm Lnterven4on Service
Autism Assessment Service
The recovery plan ran from the 1st November 2010 to the 31st
March 2011. Three hundred and fifty-four potential appointment
slots were identified within this time frame, 306 appointments
were offered as 48 (13.6%) appointments were lost to annual leave,
stat days and courses. Only 21 appointments were lost for failure
to attend, six (2%) of these children were discharged and the
remaining 15 were reappointed.
Figure 2: Reduction of Waiting list during Recovery Plan
December 2011
BACCHASM
Using this model of service the waiting list fell dramatically over
the five month period. This reduction in the waiting time has been
sustained over the last 6 months with the current waiting time <6
weeks (Figure 2).
50
The Autism Assessment Service would like to acknowledge the work
of Ms Christine Hayden, Ms Rachel Gibbs, Dr Sarah Meekin, Dr
Cliona Cummings, Ms Dorinda Gregg and all the staff involved
in the development and running of the service. Input was also
provided by Mr Rodney Morton, Performance and Delivery Group,
Department of Health, Social Services and Public Safety.
References
45
1.
40
Improve ASD Care (S) and Performance Improvement of ASD Service
35
(P). DHSSPS, Northern Ireland
30
2. Autism spectrum disorders in children and young people. National
25
Institute of Clinical Excellence. Sept 2011
20
3.
15
Assessment, diagnosis and clinical interventions for children and
young people with autism spectrum disorders. Scottish Intercollegiate
10
Guidelines Network. July 2007
5
0
ASD Strategic Action Plan 2008/09 – 2010/2011. Service Redesign to
Oct
2010
Nov
2010
Total Referrals
Total Referrals
Referral Average
Accepted Following Triage
Accepted Referral Average
Dec
2010
Jan
2011
Referral Average
Oct 2010
32
38
32
26
Nov 2010
40
38
33
26
Feb
2011
Mar
2011
Accepted Following Triage
Dec 2010
36
38
25
26
Figure 3: Autism Referral Pattern
Jan 2011
38
38
29
26
Feb 2011
33
38
19
26
Apr
2011
May
2011
Accepted Referral Average
Mar 2011
38
38
26
26
Apr 2011
43
38
17
26
May 2011
45
38
27
26
Network for Northern Ireland. Oct 2011
5.
Regional Autism Spectrum Disorder Network. Project Initiation
Document, Health and Social Care Board. June 2009
Data provided by Rodney Morton,
Performance/Delivery, DHSS
The introduction of the referral form and triage had a significant
impact on the number of referrals accepted into the AAS. In
October 2010 all referrals were accepted by the service. With the
new service model this number fell on average each month from
38 to 26 children (Figure 3). Reasons for refusal were fed back
to referrers and if further information was required the referrer
was asked to resubmit with additional information. The triage
team contacted the families/referrer directly if, on resubmission
the information given was still limited but the team felt that an
assessment was likely to be indicated.
Benchmarking of Service
Evaluation was felt to be an integral part in the development of a
new model of service, ensuring standards of assessment were being
maintained. An audit proforma was completed for each child by
their assessment team once the assessment had finished. Alongside
evaluation of the clinical model, the Trust worked closely with
parents, statutory, voluntary and educational services to ensure
that all stakeholders were aware of changes to the service and to
allow feedback on the new model. An autism co-ordinator was
appointed to work closely with all professionals and stakeholders
thus facilitating good communication. Training was arranged to
increase autism awareness in primary health teams particularly
health visitors. A general practitioner representative worked with the
autism co-ordinator and provided information to general practice
colleagues.
The Trust, as part of a Regional Review of Autism Services in
Northern Ireland(5), developed an Autism Steering Group with
representatives from Trust management, clinicians, voluntary,
statutory, education and parent carers. This Steering Group meets
three monthly to discuss issues related to autism services within
the Trust and to share information from a regional prospective.
Information regarding the new service has been disseminated to the
Steering Group, referrers eg paediatricians, health visitors and the
Belfast Trust Parents Reference Group. In turn feedback from user
groups has been incorporated in refining and shaping this evolving
service.
December 2011
4. Six Steps to Autism Care. Regional Autistic Spectrum Disorder
Dr Janice Bothwell
Lead Paediatrician for Autism, Belfast
[email protected]
MY QuOL-T: Measure
Yourself Quality of Life
Tool
Introduction
The aim of children’s palliative care should be to
maximise the quality of a limited life for a child
and their family. However, assessing quality
of life in children with life-limiting illness is
challenging for a variety of reasons, and the
majority of children’s palliative care teams do
not routinely evaluate quality of life for their
patients1.
Background
In 2010 the Department of Health allocated £30m towards projects
to improve services within children’s palliative care. Children’s
Hospice South West successfully obtained funding to develop a webbased, interactive tool to assess and monitor symptoms and evaluate
health-related quality of life for children and families who require
palliative care support. This tool was loosely based on MYMOP2 but
took this further to include longitudinal data, graphic display, an
internet interface, and communications links.
Improving the effectiveness of symptom control will potentially
improve quality of life for the child, and the family, and this tool
was designed to enable more effective, timely, and comprehensive
assessment of symptoms experienced by children and families
with life-limiting illnesses. Use of MY QuOL-T can also lead to
improvements in the quality of communications with professional
staff in outpatient and community settings, can potentially improve
co-ordination of care across agencies, and allow for more timely and
appropriate support for children and families with the greatest need.
Continues overleaf 13
BACCHASM
The initial stages of the project included focussed discussion groups
with families, with hospice care team staff, and with hospice medical
staff, to explore how the concept could work in practice, and there
was enthusiastic support across the board. The results of these
discussions were shared with software developers, who translated the
concepts into a web-based system which allows patients or families to
identify the issues or symptoms causing them most concern, create
their own measures of change and allocate these to a visual analogue
scale, and record their progress electronically in a contemporaneous
manner. Over time a continuous record of symptom scores is
generated, and displayed in graphical format. The child’s nominated
key professionals can be given access to these graphs, and trigger
points can be set up to instigate early review of symptoms or
problems that are not improving or responding to current treatment
suggestions. The data entered, and access to that data, is entirely
controlled by the patient/carer, making the system truly patient and
family centred.
This tool lends itself to monitoring changing symptoms of any
description, as identified by the child and/or family, be they physical,
psychological, objective or subjective, individual, or collective (e.g.
family sleep disturbance). It allows monitoring of symptoms that are
largely subjective (such as fatigue or mood changes) in a consistent
manner, and rebalances symptom control emphasis away from things
that can be counted (eg episodes of vomiting, fits, O2 requirement,
blood test results etc) towards a more holistic user experience. When
therapeutic interventions are introduced, this tool should enable
more effective monitoring of any response in a way that is personal
and relevant to the individual child and family, and recognises
that “normal” includes a wide range of unique definitions for the
population of children who require palliative care.
MY QuOL-T was introduced to the hospice in March 2011, and
has been piloted with a small number of families using our services
since then, and we have sought feedback from both professional and
patient/carer users throughout the process. This feedback has been
incorporated into further refinement and improvement.
Feedback and Discussion
Feedback from families has shown that the tool is easy to use, and
the process of inputting data is quick and not a huge burden in their
already-busy lives. The initial setting of the symptom descriptors
takes some time and thought, but this is felt to be a beneficial and
productive discussion. Patients and families are encouraged to share
their views and feelings about the symptoms that cause them most
concern, to prioritise these, and to describe what makes a “normal
day”, a “good day” or a “bad day” or a “truly awful day”. These
descriptions can lead onto relevant discussions about what might
happen should symptoms become worse, and lead onto constructive
approaches to end-of-life planning, and identifying and prioritising
the wishes of the patient or family for their future care.
The graphical display has been found to be particularly helpful.
Firstly, it allows patients and families to have a record of changes over
time, which can be useful during infrequent outpatient reviews – a
picture can be worth a thousand words. By demonstrating patterns,
it can allow better interpretation of cause and effect for some difficult
symptoms, and enable clearer discussions about the trade-offs
between risks and benefits of treatment options. Patients/carers have
liked the concept that the graphs could be seen by any health care
professional involved in their care, to allow a more holistic view by all
concerned of the particular challenges faced by that child and family
in the community.
By calculating the changes in symptom scores over time, and the
difference between these and what the child/family regard as normal,
it is possible to quantify changes in the issues identified as most
important by the patient/family, and translate this into a personal
measure of quality of life.
Feedback from professionals has been positive, with new insights
gained into the priorities of the child and family (“I hadn’t realised
that we saw things from such different perspectives”), recognition
14
of the beneficial value of being able to monitor changes in a
patient’s condition when at home, and the potential to evaluate the
effectiveness of treatment or interventions.
The impact of My QuOL-T on the effectiveness of communication
between patients and their health care professionals has yet to
be formally evaluated, but it is interesting to reflect that while
considerable time and expense has been devoted to improving the
communications skills of doctors, little has been developed to enable
patients or carers to share their concerns more effectively, and to
participate as more equal partners in health improvements.
Empowering the child and family to have more control in the
prioritising of problems, monitoring of interventions, and evolution
of care for the whole family should improve quality of life, and
symptom control outcomes.
The tool has direct benefits for individual patients and their families
in a wide range of settings, but also for service development and
audit, and could potentially be developed for research in the future,
though further funding will be required for this to take place. In
the meantime, it is freely available on the web for patient use, and
professional colleagues are encouraged to explore its potential and
share their thoughts on further development.
Nicky Harris, Medical Director, Children’s Hospice South West
[email protected]
1. Beringer AJ and Lenton S, (2011) Quality of life outcome measures for children
and young people with life-limiting conditions. ACT 30 Million Stars. Available
from: http://www.30millionstars.org.uk/resources.asp?section=428&beneficary=&searc
h=Quality+of+Life accessed 14th November 2011.
2. Paterson C. Measuring Outcomes in Primary Care: A patient-generated measure,
MYMOP, compared with the SF36 Health Survey. BMJ 1996; 312:1016
HEADSMART comes to BACCH
Each week, up to ten children and young people in the UK will
be diagnosed with a brain tumour. Brain tumours are the second
most common cancer in childhood and are now the leading cause
of cancer-related deaths in this age group1-5. Two thirds of all
survivors of childhood brain tumours are left with permanent lifealtering disabilities such as visual impairment, learning difficulties,
life-threatening hormonal deficits and problems with mobility and
coordination 7-10 all of which may impact on their quality of life.
Healthcare professionals can find it difficult to recognise when a
child presents with symptoms indicative of a brain tumour and who
therefore require referral for an urgent brain scan. This difficulty
in diagnosis results in part from the fact that brain tumours in
children are uncommon but is also due to the very varied clinical
presentation. The symptoms are determined by both the tumour
December 2011
BACCHASM
location and the age and developmental stage of the affected child;
many of the initial symptoms are non-specific and occur more
frequently with common and self-limiting childhood illnesses.
These difficulties in diagnosis mean that many children and young
people ultimately diagnosed with a brain tumour have symptoms
for many months before they are referred for brain imaging and
the diagnosis is made 11-21. Some families report multiple visits to
healthcare providers and they may be left with the impression that
they are inappropriately concerned about their child. Currently only
half of children in the UK with a brain tumour are diagnosed within
three months of onset of attributable symptoms. This is longer than
that reported for other European and North American countries.
A prolonged period between onset of symptoms and diagnosis has
adverse effects on both short and long-term outcomes for children
and young people with brain tumours. In the short term, children
are often extremely unwell by the time of diagnosis; this is associated
with an increased risk of death and morbidity due to raised
intracranial pressure22 and a prolonged intensive care and hospital
stay. In the longer term, being symptomatic for several months prior
to diagnosis is associated with increased permanent disability in
survivors.
Concerns about the prolonged time to diagnosis experienced
by many children with a brain tumour, among both healthcare
professionals and families affected by a brain tumour, led to the
HEADSMART campaign. The campaign is a collaboration between
the Children’s Brain Tumour Research Centre at the University of
Nottingham, the Royal College of Paediatrics and Child Heath and
the Samantha Dickson Brain Tumour Trust. It aims to reduce the
time taken to diagnose brain tumours in children and young people
by raising awareness of brain tumour symptoms among parents/
carers, young people and healthcare professionals. The campaign
is based upon the NHS evidence accredited, RCPCH endorsed
guideline “The diagnosis of brain tumours in children”23. Resources
provided by the campaign include a website (www.headsmart.org.
uk), pocket sized cards summarising the symptoms caused by brain
tumours, information leaflets for parents/carers and young people
and posters for clinics and surgeries.
Sophie Wilne (Consultant Paediatric Oncologist) and Lucie Clough
(HeadSmart Project Manager) ran a brain tumour awareness
workshop at the recent BACCH meeting. The workshop explored
the ways in which children and young people with brain tumours
may present to healthcare professionals and the discriminatory
nature (or not) of specific symptoms and signs. A neuro-anatomy
refresher was provided in the form of an interactive picture quiz and
the workshop concluded with a summary of the HEADSMART
guideline development process and the key guideline messages.
The presentation of brain tumours in children and young adults is
summarised in the HEADSMART symptom card (figure 1). This
lists the common symptoms that occur with brain tumours and
highlights the way in which age affects presentation.
Particular difficulties in diagnosis can occur in pre-school children.
The language ability of the under fives is often not developed
enough to describe symptoms e.g. headache, they frequently adapt
very well to visual impairment and can navigate familiar areas with
significantly reduced vision and it can be difficult to determine when
a child who is just learning to walk is having balance and walking
difficulties. Different diagnostic difficulties occur in adolescence.
This group have less parental supervision than younger children yet
have not yet gained the skills and knowledge necessary to engage
effectively with healthcare providers. Tumours in adolescence often
cause abnormal growth and puberty; however variations in the rate of
growth and puberty occur frequently in well children so identifying
those who require further investigation can be difficult25.
Other key guideline messages relate to appropriate imaging
modalities, selection of children for imaging and waiting times. MRI
is the imaging method of choice for diagnosing a brain tumour.
If a CT scan is used contrast must be given. All images should
be interpreted by a radiologist with expertise in paediatric neuroradiology as some tumours can be small and difficult to identify.
Reducing waiting times for assessment and imaging in children who
are reasonably well but who have symptoms or signs potentially due
to a brain tumour is one way of reducing delays in diagnosis. The
guideline recommends that no child or young person waits for longer
than two weeks for secondary care review in this situation (this
complies with the Department of Health maximum “two week wait”
Figure 1: HEADSMART symptom card
December 2011
Continues overleaf 15
BACCHASM
for suspected malignancy). If the assessing clinician then thinks the
child or young person requires imaging to exclude a brain tumour
then the maximum wait for imaging should be four weeks.
4.
Selecting which children require imaging is one of the most
challenging aspects of brain tumour diagnosis. The HEADSMART
website has been designed to help healthcare professionals select
those children presenting with symptoms that could be due to a
brain tumour and who require a brain scan from the majority who
don’t. When a child or young person is referred with symptoms
potentially due to a brain tumour there are essentially three possible
consultation outcomes – reassure (and possibly discharge), early
review or refer for brain imaging. The HEADSMART website
describes the situations in which these management options should
be followed and highlights potential diagnostic pitfalls and factors
that should lower the imaging threshold.
6.
7.
How can HEADSMART help you? If you, a parent/carer or a young
person has concerns that a symptom could be due to a brain tumour
consider looking at the HEADSMART website together and using it
to help decide what’s the most appropriate next step. When you use
the website or any of the other campaign materials please consider
contacting the HeadSmart project team – HEADSMART is a tool
to support clinicians in a challenging clinical area and your feedback
will help us improve this. If you require any further information
about HEADSMART please visit the website or contact the Project
Manager (Lucie Clough [email protected]).
5.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
19.
20.
Sophie Wilne, Consultant Paediatric Oncologist, Nottingham
References
1.
2.
3.
Stiller, C. Epidemiology of cancer in adolescents. Medical & Pediatric Oncology. 2002
Sep;39(3):149-55.
Stiller, C. Childhood cancer, in The health of children and young people. 2004, Office for
National Statistics.
Cancer Research UK. News and resources.2007. http://info.cancerresearchuk.org.cancerstat/
21.
22.
23.
24.
25.
Stiller, C.A. and Nectoux, J. International incidence of childhood brain and spinal tumours.
International Journal of Epidemiology, 1994. 23(3): p. 458-64.
Stiller, C.A., Allen, M.B. and Eatock, E.M. Childhood cancer in Britain: the National Registry
of Childhood Tumours and incidence rates 1978-1987. European Journal of Cancer, 1995.
31A(12): p. 2028-34.
Deaths by age, sex and underlying cause, 2003 registrations. 2004, Office for National Statistics.
Aarsen, F.K. et al. Functional outcome after low-grade astrocytoma treatment in childhood.
Cancer, 2006. 106(2): p. 396-402.
Ilveskoski, I. et al. Neuropsychologic late effects in children with malignant brain tumors treated
with surgery, radiotherapy and “8 in 1” chemotherapy. Neuropediatrics, 1996. 27(3): p. 124-9.
Macedoni-Luksic, M., Jereb, B. and Todorovski, L. Long-term sequelae in children treated for
brain tumors: impairments, disability, and handicap. Pediatric Hematology & Oncology, 2003.
20(2): p. 89-101.
Kennedy, C.R. and Leyland, K. Comparison of screening instruments for disability and
emotional/behavioral disorders with a generic measure of health-related quality of life in survivors
of childhood brain tumors. International Journal of Cancer - Supplement, 1999. 12: p. 106-11.
Pollock, B.H., Krischer, J.P. and Vietti, T.J. Interval between symptom onset and diagnosis of
pediatric solid tumors. Journal of Pediatrics, 1991. 119(5): p. 725-32.
Perek D. et al. Diagnostic problems in children with primary brain tumours treated in
Children’s Memorial Health Institute. Pediatria Polska, 2005. 80(1): p. 29-36.
Saha, V. et al. Determinants of symptom interval in childhood cancer. Archives of Disease in
Childhood, 1993. 68(6): p. 771-4.
Klein-Geltink, J.E. et al. Waiting times for cancer care in Canadian children: Impact of
distance, clinical, and demographic factors. Pediatric Blood & Cancer, 2005. 44(4): p. 318327.
Haimi, M., Nahum, M.P. and Arush, M.W.P. Delay in diagnosis of children with cancer. A
retrospective study of 315 children. Pediatric Hematology and Oncology, 2004. 21(1): p.
37-48.
Dobrovoljac, M. et al. Delay in the diagnosis of paediatric brain tumours. European Journal
of Pediatrics, 2002. 161(12): p. 663-7.
Thulesius, H., Pola, J. and Hakansson, A. Diagnostic delay in pediatric malignancies--a
population-based study. Acta Oncologica, 2000. 39(7): p. 873-6.
Wilne, S. et al. The presenting features of brain tumours: a review of 200 cases. Archives of
Disease in Childhood, 2006. 91(6): p. 502-506.
Mehta, V. et al. Latency between symptom onset and diagnosis of pediatric brain tumors: an
Eastern Canadian geographic study. Neurosurgery, 2002. 51(2): p. 365-72.
Edgeworth, J. et al. Why are brain tumours still being missed? Archives of Disease in
Childhood, 1996. 74(2): p. 148-51.
Wilne, S et al. Progression from first symptom to diagnosis in childhood brain tumours.
European Journal of Pediatrics DOI 10.1007/s00431-011-1485-7.
Batchelder, P. et al. Catastrophic presentations in pediatric brain tumors. Neuro-oncology
2010: 12 (6), ii 79.
http://www.rcpch.ac.uk/oncology
Wilne, S. et al. The presentation of childhood brain tumours: a systematic review and metaanalysis. Lancet Oncology 2007; 8(8): 685-695.
Levy, A. Brain tumours in children: evaluation and management. Current Problems in
Pediatric and Adolescent Health Care, 2005. 35: p. 230-245.
CATCH poster prize winner
Visual Symbols for Children with Learning Disability and Autism Spectrum Disorders
Children with learning disability and autism spectrum often have communication difficulties. They find it
hard to understand complex verbal information especially when they are anxious. It can be difficult for
them to cooperate while attending clinics and when they are admitted to hospital.
A paediatrician, with the help of parents, special needs teachers, health care staff and a software company has developed 170 symbols to help
these children understand what to expect in the hospital and in other heath care settings.
Individual symbols are used to represent each of the steps involved in the episode. Depending on what the child has to undergo in a setting
visual schedules can be set up using these symbols.
Three examples of the visual schedules using symbols are given below:
Eye clinic
16
December 2011
BACCHASM
CT/ MRI Scan
Hearing test
Symbols will be available from Widgit Software from 2012. www.widgit.com www.symbolworld.org
Widgit Software, 26 Queen St, Cubbington, Leamington Spa, CV32 7NA
Irene Vaz, Warwick Hospital.
e-Learning for Health – a review
The Adolescent Health and the
Healthy Child projects are part
of the e-learning for Healthcare
programme created by the
Department of Health for health
professionals. It is an award-winning
programme, which contains quality
assured projects in a variety of
specialities, all of them are free to
use by healthcare professionals.
The Adolescent Health and the Healthy Child projects are of
particular interest for us as paediatric trainees and trainers. They are
easily accessible through the RCPCH website and all you need is
your GMC number in order to get registered.
The Adolescent Health project is arranged in 13 modules and
comprises 70 learning sessions. It covers topics like: Healthy
development; Puberty and pubertal assessment; Psychological
development; Legal framework; Sexual health; Self harm and
substance abuse; Overweight and underweight, Health promotion
etc. There is a module about Communication and Consultation
which provides training about efficient communication with
adolescents which, as we know, is often a challenge.
Overall, the project provides deeper insight and knowledge about
adolescence, about its normal phenomena and common problems,
helps us to understand the way adolescents feel about their
health, the way they perceive us as health professionals and the
sort of help they would wish to receive. After doing some of these
modules, I personally feel more comfortable in my communication
with adolescents and more confident when I try to tackle their
problems. My understanding of the legal framework for providing
confidentiality and obtaining consent is clearer in my mind now,
which also helps in my daily work with adolescents.
The Healthy Child Programme project covers topics regarding
pregnancy and the first five years of life. The programme comprises
76 learning sessions organised into 12 modules. Examples of modules
are: Positive parenting; Development and behaviour; Speech and
language; Growth and nutrition; Immunisations; Screening and
Health promotion. I think some of these can be beneficial for us not
only as doctors but also as parents (for those of us who are or want to
be!).
December 2011
Sessions in both projects are interactive, incorporating video-clips,
case studies and self-assessment tools. There is a clear curriculum and
you can choose the sessions that you want to do first. You can access
them from any computer including NHS computers. Each session
is easily done for 20–30 mins and once completed it appears as such
in the curriculum. The menu in the e-learning portal also gives the
option “My activity”. From there you can easily trace and obtain
reports with your progress. The reports can be summarized according
to topic, session or time period. They could be obtained in the shape
of an Excel file or PDF document. In this way they can be saved
anywhere or attached to your e-portfolio library as evidence and then
linked to the appropriate e-portfolio curriculum topic.
The e-learning programme also offers options for advanced search if
you need to find a particular topic quickly. Many sessions provide
links to official documents and guidelines which you can save in
the “Personal library” in your e-learning log. The Communication
section includes an e-mail through which you can communicate with
other users. You can also express opinions or ask questions in topic
related forums or make notes in your personal notes sections.
This is just an attempt for a brief overview of these 2 huge learning
projects. I am sure they comprise even more options which I haven’t
yet discovered. I personally found that they offer an exciting new
way of learning which is very user-friendly and a bit addictive and at
the same time can provide us with the evidence that we nowadays so
much need for our learning activities.
For those who get interested in the e-learning just like me, have
a look at the Department of Healthcare E-learning for Health
webpage. (www.e-lfh.org.uk). The list of projects is huge. There is a
lot to explore. The Safeguarding for Children project is really good
and we as Paediatricians very much need the knowledge it provides.
The Dermatology, Ophthalmology and Obesity programmes are
not particularly designed for paediatric trainees but there are certain
modules that we might benefit from looking at. And last but not
least, The Leadership for Clinicians project could be of use especially
for the more senior trainees.
So in the end I can only say: these learning tools are there, lots of
very clever people have put a lot of effort to make them available for
us – LETS USE THEM!
Milena Sirakova, Paediatric ST5, West Midlands
17
BACCHBOOKGROUP
The ASM Reading List
At the BACCH ASM evening dinner Catherine Tuffrey and
I got chatting (in between barn dances) about books we
had read. We thought for this edition of BACCH news we
would ask members of the BACCH exec to think about a
book which has inspired them, led them to reflect on their
work or which they would recommend to trainees to get
them thinking about some aspect of our work.
‘outsider’ and seeing the world in surprising and revealing ways.
Christopher is limited by his fears and the difficulties he has in
interpreting the world around him. His adventures demonstrate how
easy it is for someone with learning difficulties (and/or on the autistic
spectrum) to be misunderstood. It is a good read and should be read
by everyone involved with people who have learning difficulties. Catherine Tuffrey (editor BACCH news) read
Once in a house on fire by Andrea Ashworth as
a junior registrar. “At the time I had recently
read a number of ‘misery memoirs’ – and found
them often rather over-the-top and voyeuristic.
I was therefore not sure I was going to like this
book. Although this is also the story of abuse, the
superb writing, fast pace and spare descriptions
make a great read. One tiny detail was incredibly
powerful for me. Ashworth recalls moving into a new house as a
child and describes the relief felt when she heard next-door’s TV set
being unplugged. If they could hear next door, then next door could
hear them. When talking to trainees about the effects of domestic
violence on children I recommend this book to them, as no amount
of facts and figures can hope to enable us to understand the child’s
experience of domestic violence in the way this book did for me.
Simon Lenton (Chair) chose Skallagrigg by
William Horwood. ‘I first read this book as a
trainee, when I was learning about the impact
of disability on everyday life. William Horwood
has a daughter with cerebral palsy and I believe
this gives him a unique insight, coupled with his
writing style, to write a fantasy which provides the
reader an appreciation of life with cerebral palsy,
including the social stigma and institutionalised
care that was (and still is in Eastern bloc European countries)
provided.’
“In contrast, Nadine Gordimer’s novel House Gun
does not on the face of it seem like a book relevant
to community paediatrics. A liberal white couple
in post-apartheid South Africa discover that their
son has murdered his black housemate. The book
describes two professionals suddenly faced with
having to learn about and understand a part of the
‘system’, in this case the legal system, with which
they were unfamiliar, in order to support their
child. When I was reading this book, it struck
me that parents whose child becomes ill may experience something
similar. Through no choice or fault of their own, their lives are
suddenly consumed by the need to become experts in everything to
do with their child’s condition and to navigate the healthcare system.
This realisation has led me to remind colleagues (and sometimes
myself ), particularly when we become irritated with parents who
question the system, just how it must feel to be forced into becoming
an ‘expert parent’, reliant on a sometimes chaotic and non-userfriendly NHS.”
Angela Moore (Convenor) chose The Curious
Incident of the Dog in the Night by Mark Haddon.
This book won the 2003 Whitbread Book of the
Year. It is a delightful story written in the first
person perspective of Christopher, a 15-year-old
boy who lives with his father and describes himself
as a mathematician with behavioural difficulties.
Christopher discovers the dead body of the nextdoor neighbour’s dog speared by a garden fork. He
comes under suspicion so he hits the policeman
and is arrested but released with a caution so he decides to investigate
the dog’s death.
The book was hailed as a story about someone with Asperger’s
or high functioning autism but was criticised for not accurately
depicting a person with ASD thoughts and feelings, as the main
character appears to be too self-aware. The author himself does not
claim to have written about a person on the spectrum or to be an
expert on ASD and admits to very little knowledge on the subject.
The novel was inspired by two different people known to the author.
It is a novel about understanding the differences in others and what
makes them individual, peeling off the ‘labels’. It describes being an
18
To describe the plot without giving away too much is difficult,
Wikipedia helps us out:
“The story concerns Arthur, a young boy suffering from cerebral palsy,
abandoned in a grim hospital in the north of England and subject to
extreme cruelty and neglect; Esther, a keenly intelligent teenager who
also suffers from CP but whose talents are recognised in these enlightened
days; and Daniel, an American computer-gaming genius. They are linked
by the Skallagrigg; whatever or whoever it is will transform their lives.
Esther sets out on a quest to find the truth of the Skallagrigg, founded in
the life and experiences of Arthur. She encapsulates what she finds in a
tortuously complex computer game, knowing that the truth is never likely
to be uncovered. A man named Martin has heard the word Skallagrigg
from his senile grandmother and when he hears of Skallagrigg the game,
he is determined to solve it and discover what it means...”
Liz Didcock (Convenor BPMHG) chose We need
to talk about Kevin by Lionel Shriver. Eva, mother
of teenage mass murderer Kevin, is writing to
her estranged husband, Franklyn, as she tries to
understand why her son has killed dozens of his
peers at school, with his new crossbow. Is he the
way he is, because she didn’t really want a baby?
Didn’t connect with him as he grew up? Was she
distracted by her career, and by her longings to
travel as she did as a young single woman? Or is it that Kevin was
just born evil? Why does he lack empathy? Why does he seem to
enjoy inflicting pain? Is he a psychopath? Why doesn’t Behaviour
Modification (as we often suggest to parents) work with Kevin?
Liz writes “This book has stayed with me as it explores in a raw and
uncompromising way, nature vs nurture. It asks us if Kevin’s actions
are as a result of his mothers coldness, emotional unavailability, her
negativity, or is this a tale of poor parents struggling with a difficult
child?
“It is a great, if disturbing read, and I think about it often in
consultations. It is also now an excellent film with Tilda Swinton as
Eva.”
To finish I would like to thank my fellow readers who made my job
so easy this time. We hope that this has given you food for thought
and perhaps ideas for your Christmas list. If it has got you thinking
about books you recommend please email me we would love to hear
from you.
Anna Baverstock, Taunton
[email protected]
December 2011
BACCHINFOMATICS
TOP OF THE POPS
PAEDIATRIC OUT PATIENT
SPECIALTY COMMUNITY
CODES – THE TOP 30 (POPSCC 30 v.1)
WHAT IS IT?
POPS-CC 30 v.1 is a list of 30 codes chosen to capture the vast
majority of community paediatric activity covered under Treatment
Function Codes 291 and 290.
WHY IS IT NEEDED?
Most clinicians and services have so far had very little diagnostic
information on case mix. Where IMT systems such as RIO or TPP
have been introduced, services have developed their own lists with
often more codes than needed. Services lack comparable data to
influence commissioning to reflect, for example, whether ADHD,
ASD, or continence problems are covered and the number of
children/contacts involved. Revalidation will make this data essential
soon for individual clinicians.
WHO IS IT FOR?
For individual clinicians, clinical directors and commissioners.
WHO HAS PRODUCED IT?
Dr Fawzia Rahman and members of the BACCH Informatics email
Group have compiled this list using various lists in existence. We
have found that 30 codes, if general enough, will cover 90% of
community paediatric activity.
EXACTLY HOW CAN IT BE USED?
Individual doctors can use it to record the main diagnosis in their
next 100 patients, either new or follow up, or both, or over the next,
say, three months. Doctors will be able to total this up themselves,
as the numbers will be relatively small; this will give them a very
good idea of their caseload and case mix prior to job planning and
appraisal. The form can also be used to record the type of contact for
each diagnostic code or pathway.
Clinical Directors can collate the numbers from individual doctors
in their teams and will then have congruent information for the
whole service.
Commissioners will probably want the data for individual codes
grouped into major pathways. (Some further work will probably
have to be done for levels of complexity, as this will reflect costing,
which is what they are really interested in.) This level of information
is likely to be very helpful for any payment by results discussion,
including discussions as to whether the service should be paid per
case seen or per year of care (i.e. the currency).
IS IT PAPER BASED OR IT BASED?
Both. Where there is no access to IT or input, doctors can just use
pen and paper and be reassured that the information will be available
to them, as they only need to send a copy to their clinical director.
Where doctors have access to IT systems and are guaranteed that an
output report will be available they can just enter the appropriate
code(s). A comparative list has been given for both READ and
ICD10. The BACCH website has a list for those few units who are
using SNOMED CT as this is a longer list.
December 2011
IS IT FINAL or mandatory?
By no means.
This is a very first attempt and it is recognised the list is very general
and deliberately aimed at Community type work likely to be coded
under TFCS 291 and 290, not general paediatrics. Some units may
wish to substitute the codes for more detailed codes, but I would
recommend that these are also aligned to a particular pathway and
listed as sub-codes whenever possible (e.g. subtypes of cerebral palsy).
There is a separate national data project for palliative care and links
have been made, so the POPS-CC-30 list has relatively few codes
relevant to palliative care. For purist readers, I am taking “disorder”
to sometimes mean delay and deliberately have not gone into the
semantics of taxonomy.
ARE 30 CODES ENOUGH?
There was general agreement in the discussion group about these
30 codes; they will allow coding of 90% of community paediatric
activity as we found in the three units who had “output data”.
However, it would be helpful to have additional codes, at least for
some services. Several lists of additional suggested codes will be
placed on the BACCH website, in particular those submitted by
Andrew Lloyd-Evans and Karen Horridge as they are very short
and complementary to POPS-CC-30. People can then “choose”
those extra codes that would be most relevant to them. Hamilton
Grantham and Cliona Ni Bhrolchain’s SNOMED CT list will also
be uploaded, as will the Derby 50 list.
A maximum of 50 “approved” codes would be beneficial to our
services, as we could ask the information centre to make those
available to colleagues using the PAS system where currently no
OPD based coding occurs in most places. RIO and TPP allow you to
choose your codes locally.
WHAT ABOUT COMORBIDITIES AND COMPLEX
CASES?
The basic list of 30 codes can be used to reflect comorbidities and
complexity levels, for example by using two or more codes for each
contact but this will require more complex analysis. Best to start
with the basics! I think that, ultimately, a complexity banding will be
needed (as has happened for cystic fibrosis) and have asked Gillian
Baird and BACD to look at doing a piece of work in that area. If you
do want to code for complexity, please contact me to discuss.
THE PRACTICALITIES (Excel spreadsheet at bacch.org.uk)
1. Print or copy from newsletter POPS-CC 30 Master list
Then either
2a. use sheet ABV with abbreviations to record your new/
follow up contacts by entering N or F along each code; this
means you are using only one code per contact
2b. use sheet CLINIC as a clinic list to enter several codes per
contact. Be warned that this will be more complex to add
up and analyse!
3. sheet contacts codes has the different contacts codes we
use in Derby. You may want to have a separate sheet for
telephone contacts for a month, for example.
WHAT HAPPENS NEXT?
It is up to you! My suggestion:
Take the list to your colleagues and discuss whether you wish to use
this as a department and whether you wish to add to some further
Continues overleaf 19
BACCHINFOMATICS
codes/ subcodes. If you go it alone, use the data for your appraisal!
Try it for the next three months, look at the data together as a team
or with your appraiser, and send feedback to me please.
TAKE CONTROL OF YOUR CLINICAL INFORMATION
“My patients, my data” (it is the patients’ data of course as well)
Read
20
Fawzia Rahman, and expert coders Moira Broderick & Suresh Somarathi
[email protected]
With the collaboration of
Cliona Ni Bhrolchain, Hamilton Grantham, Nirmala Sellathurai
Georgina Siggers, Corina O’Neill, Andrew Lloyd-Evans, Gillian Baird,
John Gibbs, Onikepo Adeoye, Reeta Gupta, Karen Horridge , Anastasia
Bem, and the BACCH informatics email group.
ICD 10
Diagnosis
path
abv
X00Sx
1
F50
eating disorder
BEH
EAT
X00TU
3
F91
Conduct disorder
BEH
CON
Xa9BB
4
F95
tic disorder
BEH
HAB
X00TR
5
F98.9
behavioural & emotional disorder unspecified
BEH
NOT
FY00.
6
G47.9
sleep disorder
BEH
SLE
X766J
7
X84
self harm
BEH
SEL
X00TM
8
F84.0
Autistic spectrum disorder (definite)
BEH
DAS
XE2Q6
9
F90
Attention deficit hyperactivity disorder
BEH
HYP
Eu7z1
2
F70.1
behaviour problems related to learning disability
BEH/L
BLD
E310
10
F71
moderate mental retardation
LEARN
MOD
E311
11
F72
severe mental retardation
LEARN
SEV
XE1Z3
12
F80.9
Disorder of speech and language development
LEARN
DSL
XE2bB
14
F82
Specific developmental disorder of motor function
LEARN
SDM
XE0rD
1
K59.0
Constipation
GEN
TIP
Cyu8.
2
E88.9
Metabolic disorders
GEN
END
Xa0AN
3
Q89.9
Congenital malformation
GEN
MALF
PJ...
4
Q99.9
Chromosomal abnormality
GEN
CHRO
XE1MZ
5
Q90.9
Down’s syndrome
GEN
DOS
F25...
1
G40
Epilepsy
NEU
EPI
X708D
3
G71.0
primary disorders of muscle
NEU
MUS
X00Em
2
G80.9
Infantile cerebral palsy, unspecified
NEU
PAL
Pyu03
4
Q04.9
congenital malformation of brain
NEU
BRA
X000E
5
G98
neurological problem NOS
NEU
NEU
F492.
1
H54.2
Low vision, both eyes
SENS
BLI
F590.
2
H90.2
Conductive hearing loss
SENS
CHL
F5916
3
H90.3
Sensorineural hearing loss, bilateral
SENS
SNL
X70xw
1
T74.0
Neglect
SFG
NEG
XE1ov
2
T74.1
Non accidental injury
SFG
NAI
X70xv
3
T74.2
Child sexual abuse
SFG
CSA
XE1ou
4
T74.3
Emotional abuse
SFG
EAB
December 2011
BACCHNEWS
Social paediatrics – from Europe to
the world
Last month, when I attended the annual meeting of
ESSOP (the European Society for Social Pediatrics and
Child Health) in Maastricht, I was one of only five UK
paediatricians in the audience of nearly 100. Though most
BACCH members take a global perspective and enjoy
travelling, I fancy that (like me a few years ago) they feel
that overseas meetings are too extravagant, hard to get
study leave for, or are not relevant to their present jobs.
Or maybe, they never heard of ESSOP, or don’t think they
are ‘social paediatricians’. I won’t mention insularity! My
purpose in writing is to encourage you to re-examine your
prejudices, and come – the next meeting is in St Andrews,
Scotland in September 2012.
ESSOP brings together paediatricians and linked disciplines from
most European countries, including Turkey, Greece, Spain, Croatia,
Poland and Iceland – together with significant representation from
Australia, Canada and USA. Meetings cover a very similar mix to
BACCH – child protection, disability, school health, child public
health and community-based research. Child rights is prominent and
has been a theme for several meetings and initiatives. I have learned
hugely from many colleagues particularly from the Swiss, Swedes and
other Scandinavians who are strong on epidemiological research as
well as on social support for children. The current ESSOP President
is Nick Spencer and the secretary general is Geir Gunnlaugsonn
from Iceland. Meetings are small and intimate (not usually over 100
people) with lots of opportunity for networking.
At its last meeting in Maastricht in October, ESSOP voted to change
its name and mission to become international – the International
Society for Social Pediatrics (ISSOP). This has big implications
for both the site of meetings and the agenda – which will have
to be broadened to cover millennium development goals, social
determinants in low income countries, HIV and AIDS, child labour
and more. The big question is how to reach out to a much wider
audience without having lots of carbon burning meetings all over the
world. One way is through membership of CHILD2015, a global
health internet forum linked with the International Child Health
group and which ISSOP has now joined to ensure that child rights
and social determinants of health are covered in the discussions.
See www.hifa2015.org/child2015. I would encourage all BACCH
members with an international interest to join this forum, whose aim
is to address the information and learning needs of those responsible
for the care of children in developing countries. CHILD2015 has
amazingly wide coverage particularly in Africa and recent topics
have included child abuse, neonatal care, rational prescribing and
information for parents.
ISSOP plans to be a vibrant, cohesive and activist organisation
that will unite child health professionals in the challenging tasks
of promoting child health worldwide. Please consider coming to
the next meeting, which will be in St Andrews on 6-8th September
2012. Simon Lenton and Raghu Lingam are on the organising
committee, and the theme is evidence-based practice and evidencebased policy. International speakers will attend via web-conferencing
and the meeting will be web-streamed. For more details and draft
programme, see www.issop2012.co.uk. Remember – think global, act
local!
Tony Waterston
December 2011
Coram Children’s Legal Centre
Launches Child Protection Project
Coram Children’s Legal Centre (CCLC) has launched a new
telephone line offering free legal advice and information
to frontline practitioners regarding their child protection
and safeguarding obligations provided by an experienced
family law solicitor. The advice line is part of a new project
of the CCLC. Funded by a grant from the Department
for Education’s Improving Outcomes for Children, Young
People and Families Fund, the overall purpose and goal
of the CCLC’s Child Protection Project (CPP) is to offer
practical tools and services which will clarify and illuminate
the legal obligations of frontline practitioners working with
children. The focus on legal obligations extends from the
expertise available within the CCLC staff, as well as the fact
that this appears to be lacking in the current framework of
training and information available to frontline practitioners.
This will necessarily include information and training on how
to meet and fulfil these obligations, both in terms of the law
as well as best practice.
Coram Children’s Legal Centre (CCLC), part of the Coram group
of charities, specialises in law and policy affecting children and
young people. Since its foundation in 1981, it has become one of the
leading campaigners for children’s rights in the United Kingdom and
providers of practical legal assistance and advice to children. Much of
the increased awareness in the UK of the need to protect the rights of
children, including certain key areas of legislation, is due in part to
the work of the Centre.
The Services
The Child Protection Project is a three-pronged service that will
offer information to frontline practitioners in the statutory, nonstatutory and voluntary sectors through a variety of mediums. The
above-mentioned telephone line (see end of article) is already up
and running offering bespoke legal advice and information on child
protection and safeguarding issues to the full range of professionals,
volunteers, and other staff that make up the children’s workforce, as
well as those in other sectors where child protection and safeguarding
concerns may arise, such as adult services.
As well as the bespoke advice line, a new innovative website is due to
launch early 2012, which will provide comprehensive information on
a broad range of child protection and safeguarding issues, as well as
legislative and policy updates and summaries of relevant reports and
key legal judgments.
The website will also include information on basic child protection
and safeguarding legal obligations of frontline practitioners, as well
as a detailed overview of the child protection system in England. In
addition, the website will provide information on a range of crosscutting issues such as disclosure and confidentiality, obligations
regarding information-sharing and consent which arise in many child
protection and safeguarding matters. Specialist legal information will
also be included on the website, such as cultural sensitivity in child
protection (how to address suspicions of female genital mutilation or
forced marriage), concerns regarding and obligations towards asylumseeking children and young people, provisions for young people
Continues overleaf 21
BACCHNEWS
leaving care, and the impact of domestic violence, substance abuse,
and parental mental health on child protection and safeguarding,
among others.
A web-chat facility will also be accessible via the website, through
which users will be able to communicate with the CPP’s solicitor,
thereby increasing accessibility of the service and providing
practitioners a more confidential means for obtaining legal advice
and information. Online training programmes will also be available
through the website, and in-person (single- and multi-agency) and
bespoke training courses will also be provided. A broad range of
topics will be covered in the training courses, including modules
on children’s human rights, recording information regarding child
protection concerns, profession-specific training on confidentiality
and disclosure, and other aspects of child protection and
safeguarding.
How might the Child Protection Project benefit
you?
The information and advice offered by the CPP will be of great
benefit to frontline practitioners across the spectrum of the children’s
and adult services workforce. Examples of situations in which a call
to the CPP advice line would be of help include:
•• A health visitor may have concerns regarding a young child
whose parents have known substance misuse problems. S/he may
be unsure of the parents’ ability to adequately care for the child,
but is unsure what action, if any, to take. By calling the CPP
advice line, the health visitor would obtain professional advice
regarding his/her legal obligations towards that child, as well as
clear information on what actions s/he could or should take.
•• A community children’s nurse working in an area with a large
minority population learns that the mother in a family she has
worked with was subjected to female genital mutilation in her
youth. There are three daughters living in the house, and the
nurse is concerned that they may be at risk of the unlawful
practice, but is unsure whether this is a child protection issue.
A call to the CPP advice line would provide the community
children’s nurse with information about what actions she can take
and what the relevant legal provisions say.
•• A paediatrician treats a 2-year-old child who is brought into
her surgery by a girl that appears to be 13 or 14 years old and
is concerned over her ability to care for the toddler, as well as
the fact that the young girl does not appear to be in school. By
calling the CPP advice line, the paediatrician would be able to
obtain information about the relevant legislation, as well as about
whether his/her concerns are valid and what actions should be
taken, if any.
Call us for FREE Legal Advice:
07884
262362
Monday-Friday, 9:30am-5:30pm
Jo-Anne Prud’homme, Legal Researcher
[email protected]
22
Challenging
Behaviour
– getting the right
support
The term ‘challenging behaviour’ is used to refer to
behaviour which puts the safety of the individual or
others in some jeopardy or has a significant impact on
the individual’s quality of life. Such behaviours include
aggression (e.g. hitting, kicking, biting), destruction
(e.g. ripping clothes, breaking windows, throwing
objects), self-injury (e.g. head banging, self-biting,
skin picking), and many other behaviours (e.g. running
away, eating inedible objects, rocking or other
stereotyped movements).
Most people without learning disabilities display lots of challenging
behaviour very early in their lives, however most two-year-olds
develop a range of communication and social skills which enable
them to get what they want and need rather more easily. Children
with learning disabilities, however, do not develop such skills to
anything like the same extent and are left with much the same needs
as their peers but much less competent ways of getting them met.
Caring for a child with severe learning disabilities whose behaviour
challenges can put families under great pressure and often restricts
what they are able to do. At a time when many
local areas are having to reduce the support they
can offer it is particularly important that families
are aware of what they are entitled to, and can be
confident when asking for it.
The Social Care Institute for Excellence in
partnership with the Challenging Behaviour
Foundation and Challenging Behaviour National
Strategy Group has produced a new ‘At a glance’ guide
for family carers, setting out what families should expect from
local services. The briefing aims to help families caring for children
with severe learning disabilities whose behaviour is described as
challenging understand what good support and services should look
like, to enable families to ask for the support they need, and to work
in partnership with the professionals with whom they are involved.
The guide acknowledges that the way things are done will vary
between different areas. Specifically focussing on support around
challenging behaviour, the guide sets out the principles of a ‘positive
behaviour support’ approach, based on a comprehensive behaviour
assessment. Key messages include:
•• Challenging behaviour can usually be reduced or avoided with
support.
•• Support should be flexible and personalised to the needs and
circumstances of individual families.
•• Support should be available to prevent challenging behaviour
developing or getting worse.
•• Support should be available from a behaviour support team or
equivalent.
•• A behaviour support plan should be developed, setting out what
is likely to trigger the behaviour and how families, services and
schools should respond.
•• Parents should expect to work in partnership with the
professionals involved with their child’s education and care and
be fully involved in discussions and decision-making.
December 2011
BACCHNEWS
BACCHCAREPATHWAYS
The guide, entitled ‘Challenging behaviour: a guide for family carers
on getting the right support for children’ is available to download
from the Social Care Institute for Excellence website (www.scie.org.
uk) or from the website of the Challenging Behaviour Foundation
(www.challengingbehaviour.org.uk). Hard copies can be ordered (free
of charge) from [email protected] or [email protected].
Karen McKane
The Challenging Behaviour Foundation
Email: [email protected]
www.challengingbehaviour.org.uk
The Challenging Behaviour Foundation is a registered charity providing free
information, support and training to families caring for sons and daughters
with severe learning disabilities (ie. limited communication skills, often
non-verbal, and needing support with daily living skills such as eating and
dressing)
The Nottingham Integrated care
pathway for the management
of weight and growth faltering in
young children
Introduction
This care pathway was written a few years ago, and whilst still
relevant and used in Nottingham, sadly the growth assessment team
described within it, is more ‘virtual’ than ‘actual’. This has occurred
as the input from the Community Paediatric Dietetic Team has
reduced significantly with their limited resources, and other work
pressures. Similarly the role of the Health Visitor (HV) and Specialist
HV has been difficult to sustain, again with changing roles and
responsibilities.
That said, I hope you will find it useful; a full PDF version is
available on the BACCH website, and it is currently being updated
to include reference to the new WHO growth charts. Please adapt it
for your local needs and service structure.
The Nottingham pathway was based on a published statement
‘Recommendations for best practice for weight and growth faltering
in young children’, produced by a National multidisciplinary group
convened by the Children’s Society in 2002. It was endorsed by the
Nutrition committee of the RCPCH and by the British Dietetic
Association. I have included here some key parts of the document.
with disabilities are also affected. Babies of low birth weight should
show catch up growth in the first 3–6 months of life, and need a
high energy intake to do so.
In the past, responses to young children’s faltering growth have
not been well managed, with patchy provision of services and an
uncoordinated approach. This has led to some children’s faltering
weight and/or growth being unrecognised (Batchelor & Kerslake
1990) while others have received damaging, inappropriate or
ineffectual responses (Raynor 2002; Underdown 2002).
There are potentially serious consequences for both the child and
the family if the issues of weight and/or growth faltering are not
addressed. These may include compromised growth (Drewett et
al 1999; Boddy et al 2000), delayed development (Skuse 1992;
Reif 1995) increased risk of adult ill health (Eriksson et al 2001),
increasing family stress and dysfunctional eating behaviour on the
part of the child (Raynor & Rudolf 1999b).
Services need to be child-centred and to treat families with respect
and dignity and to recognise the stress for all members of the family,
including the child.
Response to young children’s faltering weight/growth
The flow diagram (Fig 1) indicates the responses to be made when
young children’s faltering weight and/or growth is identified.
The family’s need for specialist services e.g. interpretation/
translation, literacy, help with comprehension, cultural, religious and
dietary needs should be identified and met.
Triggers for Primary Care Assessment
•• A weight or height below the 0.4th centile, noted for the first
time
•• A sustained fall through two centile spaces for weight and/or
height
•• Consider if weight or height is below the 2nd centile, or weight/
height is below the Target Centile Range
Primary Care Assessment and Management
In those children where weight gain is a concern, the family’s Health
Visitor should negotiate home visits at meal/feed times to allow
observations. A range of data should be collected including:•• Feeding and symptom history since birth
•• Growth history since birth
•• Any relevant medical or domestic details
•• Food diary – outlining both food/drinks offered and taken and
the times offered
•• Details of mealtime routines, including observation of food
preparation and mealtime interactions
Aim
To ensure that the family of every young child whose weight and/or
growth is faltering (previously known as failure to thrive) receives an
appropriate assessment and where necessary a timely package of care.
•• Family’s concerns/anxieties
Definitions
Weight faltering – weight falling through centile spaces, low weight
for height or no catch-up from a low birth weight.
Growth faltering – crossing down through length/height centile(s)
as well as weight. A low height centile or a height less than expected
from parental heights.
Having identified areas where there is potential for change, the
Health Visitor should offer appropriate advice and ongoing support.
This is likely to include strategies that address:
1) insufficient nutrient intake, e.g.: faddy eating, excess drinking,
poor parental child interaction, or
2) insufficient nutrients offered, e.g.: lack of parent/carer knowledge
or skills on good nutrition, stressful social situations, including
neglect or abuse.
Rationale
Faltering growth occurs in 2-5% of children (Skuse et al 1992;
Wright et al 1994) and is readily resolvable for the majority. It occurs
in families from all socio-economic groups and cultures. Children
December 2011
•• Interaction between parents or carers and child, with description
of any behavioural problems
If eating or other behaviour is problematic, the Health Visitor may
offer behavioural management, perhaps with Nursery Nurse support.
Continues overleaf 23
BACCHCAREPATHWAYS
The Health Visitor should also consider other family support, e.g.:
Sure Start/Children’s Centres, Healthy Living Centres, Family Centre
or other Day Care support. The Health Visitor should discuss the
findings with the family’s GP and a decision should be made with
regard to the need for onward referral. Where there are no concerns –
normal surveillance procedures should ensue.
Children’s progress should be monitored by a combination of
periodic weighing and assessment of family functioning. Children
should not be weighed too often: no more than once per 1-3 months
depending on age and severity. Length/height should be measured,
but not more frequently than six monthly.
Discussion with and/or referral to member of locally
based Growth Assessment Team
When concerns are identified, the Health Visitor should discuss his/
her findings with a member of the multidisciplinary team. As a result
of this discussion there are three possible alternative courses of action:
•• No cause for concern – normal surveillance
•• Advice offered
•• Referral to a member of the multi-disciplinary team using the
referral form
Growth Assessment team input
There is considerable overlap in team members’ roles, so that
individual children are unlikely to need to see more than one or two
people. It is vital that the members of this group work as a team to
ensure consistency of advice and information. The specific expertise
provided by each discipline is outlined below.
Specialist Health Visitor
The Specialist Health Visitor’s role includes providing an important
link for Health Visitors who have queries about children presenting
with weight/growth faltering. In addition to providing support for
these colleagues via clinical supervision and case discussion s/he
may carry out joint home visits with family Health Visitors in more
complex cases, if required.
The Specialist Health Visitor should have expertise in parent and
infant interaction, dysfunctional eating, behaviour management and
oro-motor dysfunction. In addition s/he may have expertise in the
training and clinical supervision of staff, and providing liaison in
cases seen by the multidisciplinary team. She may supervise a nursery
nurse to support this work.
Community Paediatrician
The paediatrician’s role in the team is to provide a medical assessment
and advice to parents and professionals. S/he should have expertise
in nutrition, management of dysfunctional eating behaviour and
interpreting growth patterns. Paediatric management includes the
following:-
the child is anaemic) are only needed if indicated by findings in the
history and physical examination. These should be conducted early
in order to minimise clinic/hospital attendances and to eliminate
parents’ reliance on a ‘medical solution’ to their child’s faltering
weight/growth.
Community Paediatric Dietitian
Dietitians translate the science of nutrition into practical information
about food. They work with people to promote nutritional wellbeing, prevent food related problems and treat disease.
Dietitians are trained in motivational interviewing and counselling
techniques which are used when addressing the following:
•• Establishing food attitudes, value systems and beliefs
•• Ensuring appropriate parent/child interactions, particularly
related to food and drink
•• Exploring drinking habits and discouraging prolonged use of a
bottle
•• Advising on age-appropriate structured mealtimes, snacks and
drinks
•• Increasing nutrient density of meals using foods where possible
•• Identifying any micronutrient deficiencies and correcting for
them where possible
•• Considering use of nutritional supplements if no improvement in
growth as a result of the above interventions
Outcomes
It is not usually realistic to expect that intervention will completely
correct a faltering growth pattern. However a minimum outcome to
aim for from intervention should be no further fall away (tracking
a centile) with catch up in most children. There should also be
improvement in mealtime interactions and a reduction in family
stress and anxiety where relevant. Weight/growth recovery would
usually be defined as catching up to within 2 centile spaces of their
expected centile.
Fig 1
Response to young children’s faltering weight/growth
Growth Monitoring
Child’s faltering weight
and/or growth identified
by parent or carer or
professional
Primary care
Health Visitor
assessment and management
No concerns
Normal surveillance
Advice
Discuss with a member of
the local growth assessment
team-Community
Paediatrician, Community
Dietician, Specialist HV
•• Providing expertise to interpret the growth pattern
•• A paediatric evaluation to exclude a medical cause for the poor
growth
•• A developmental evaluation
Assessment and
management by growth
assessment team member(s)
•• Providing advice about coincident medical conditions
•• Providing dietary and behavioural advice if other colleagues in
the team are not directly involved
In most cases there is no underlying organic cause, however a
medical opinion can be helpful in allaying concerns and providing
reassurance. It is important that this is carried out early so that
input and support from other professionals can be provided without
delay. Investigations (other than a FBC and ferritin to determine if
24
Referral to other
Professionals
Child
development team
Hospital
Paediatrics
Clinical
Psychology
Speech & language
therapy
Children’s Social
Care
Dr Liz Didcock – Consultant Paediatrician, Nottingham
December 2011