mar
‘13
The Quar ter ly Newsletter of The Br itish Association for Communit y Child Health
BACCH VISUAL IMPAIRMENT
SPECIAL p11
BACCH Essential Standards
Toolkit (BEST) – outcome
measurement for community
child health p 5-6
BACCHCHAIR
SSASGNEWS
CSACNEWS
BACCHBOOKGROUP
CPDUPDATE
BACCHINFORMATICS
BACCHNEWS
Contents and Contacts
Table of Contents
2
CONTENTS and CONTACTS
3
FROM THE EDITOR
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.
3
CONFERENCE DIARY
BACCH welcomes new members!
4
FROM THE CHAIR
The benefits of your BACCH membership include the following:
5–6
BACCH CONVENOR
7-8
CSAC NEWS
8-9
CPD UPDATE
9
SSASG NEWS
1
2
3
4
5
6
7
11–16
BACCH VISUAL IMPAIRMENT SPECIAL
17-19
BACCH BOOK GROUP
19-22
EMPLOYMENT SPECIAL
22–24
BACCH INFORMATICS
24
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
ISABELLE ROBINSON
EXECUTIVE OFFICER
Tel: 020 7092 6082
E-mail: [email protected] or [email protected]
BACCH, BACD, CPHIG, CPSIG and BPMHG
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BACCH TRAINEES
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BACCH Newsletter Contact Information
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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
Fawzia Rahman
Ben Ko
Catherine Tuffrey
Raghu Lingam
Douglas Simkiss
Thérèse Bennett
Cliona ni Bhrolchain
Hamilton Grantham
Sarah Panjwani
Jill Yates
Liz Didcock
Jane Lyons
Gillian Baird
Jane Ritchie
Deborah Hodes
Christine Arnold
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BACCH Regional Coordinators www.bacch.org.uk/about/regional.php
East Anglia
Mersey
Northern
North West
N Ireland
NE Thames
NW Thames
SE Thames
SW Thames
Oxford
South West
Trent
Wales
Wessex
W Mids
Yorkshire
Scotland
2
Venkat Reddy
Jackie Gregg
Nicola Cleghorn
John Agbenu
tbc
Sarah Luke
Reeta Gupta
Georgina Siggers
Ayomi Kari
Adeola Vaughan
Stella Imong
tbc
Nia John
Valerie Shrubb
Neal McCathie
Anne Kelly
Helen Gibson
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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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The opinions expressed in
BACCH News are those of
individual contributors, and not
necessarily of the Editor or BACCH.
March 2013
BACCHEDITORIAL
FROM THE EDITOR
I confess to finding editorials
that start with a personal story
and then produce what often
seems like a tenuous link to a
medical subject, rather irritating.
Well, I’m breaking my own rules
this time, as my recent personal
experiences seem particularly
apposite to some of the content in this issue of
BACCH News.
I am writing this as I warm up in the living room after a day outside
walking in the woods, admiring drifts of snowdrops with a friend
and her four year old. The day before yesterday this little boy was
having his eyes checked by a worried junior doctor in ophthalmology
who confirmed his mother’s diagnosis of uveitis. His mother has no
medical qualifications but searched Google when her son complained
of blurred vision in one eye which was red. He’s just recovering
from chickenpox, and putting ‘chickenpox’ and ‘red eye’ into the
search engine brought up the NHS site, which described uveitis as
a complication of chickenpox. She went to the GP who said it was
conjunctivitis, despite my friend pointing out the lack of discharge or
itch and the positive symptoms of blurred vision, floaters and a red
painful eye and her reading on the internet. The GP persisted with
his diagnosis, prescribed antibiotic ointment and told her it would
take 1–3 weeks to get better and she should come back then if it
didn’t clear up. She said he didn’t seem very sure of himself and she
felt he couldn’t bring himself to admit he didn’t know – or that she
might be right.
My friend left the doctors and asked the opinion of the pharmacist to
whom she took the script. He said he thought she was right and that
she should go straight to the eye hospital. I am glad to say that the
symptoms are now resolving on treatment and we hope that no visual
impairment has resulted. Why am I telling you this? Well, serious
visual problems in children are fortunately rare, but this case and that
of the family who have written for this quarter’s issue of BACCH
news (page 11) illustrates one of the problems when children have
rare presentations which doctors have not come across before –
sometimes parents are falsely reassured and this can have devastating
results in some cases. Those of you who are experienced clinicians
will know that you ignore a concerned parent at your peril – but it
never harms to be reminded of the consequences of being too proud
to admit our ignorance, or to phone a friend!
And personal pride and fear of failure may have taken a part in the
disastrous outcomes in Mid Staffordshire too – Simon Lenton gives
his response to how the findings of the Francis report has lessons for
us in community child health (page 4).
A few Sundays ago I stood in the cold in Eastleigh town centre with
a few dozen other people with helium balloons and rosettes as a local
doctor standing for the National Health Action Party in the Eastleigh
by-election addressed us. As the morning progressed and the children
walking and scooting through the park cajoled their parents into
approaching us for a free balloon, it was heartening that many of
the people we spoke to were supportive of the NHAP’s aims and
expressed concern about the NHS. My fear is that, like the doctors
and managers who plough ahead without heeding the warnings
signs of impending disaster, the politicians are ploughing ahead with
dismantling the NHS despite the protestations of patients and the
professionals, and the result will be irreversible damage to the health
and well-being of the nation.
If like me, the current situation in the NHS can sometimes feel
overwhelmingly difficult and hopeless, on that Sunday in Eastleigh
March 2013
something happened which spurred me on. Midway through the
rally, an elderly lady appeared. She told us she was a retired teacher in
her eighties who had come by train from London on her own to lend
her support because she said the NHS is too important to lose. So
when you are feeling weary of endlessly battling for your services and
advocating for children and families, I hope you will feel invigorated
as I did, by the knowledge that there are octogenarians who still
think it worthwhile to keep shouting about the things that matter.
And spring is coming! I hope you enjoy reading the current issue and
my thanks as ever to all the many good people who have contributed
a great range of articles. Special thanks to the families who have
written about their experiences of visual impairment.
Catherine Tuffrey
[email protected]
CONFERENCE DIARY
Date/s Event
Location
March 2013
22
SACCH Annual Conference: Reaching our Potential Dundee
http://www.bacch.org.uk/about/Scotland.htm
25
BACD ASM: Brain injury and rehabilitation
http://www.bacdis.org.uk/conferences/annual_
scientific_meeting.htm
Birmingham
April 2013
19
BACCH Trainees Day - Community Child Health: London
what does the future hold?
http://www.bacch.org.uk/conferences/trainee_day.htm
May 2013
10
DSMIG One Day Symposia: What makes it difficult Hatfield, Herts
for children with Down syndrome to learn?
http://www.dsmig.org.uk/noticeboard/index.html
17
North West BACCH/BACD/CPSIG Regional
Meeting
http://www.bacch.org.uk/about/NorthWest.htm
Clayton le Moors,
Lancs
June 2013
5-8
Joint RCPCH and Europaediatrics Annual
Conference
http://www.rcpch.ac.uk/events/annual-conference
August 2013
Glasgow
24-29 International Congress of Pediatrics 2013
http://www2.kenes.com/IPA/Pages/home.aspx
Melbourne
September 2013
2-3
BACCH ASM: Getting it right for Children:
improving clinical care
SAVE THE DATE
19-22 EAP Educational Congress and Master Course
http://www.paragon-conventions.net/eap/
Cardiff
Lyon
October 2013
10-12 European Academy of Childhood Disability
Conference
http://eacd2013.org/
Gateshead
See also the BACCH website conference directory:
http://www.bacch.org.uk/conferences/conferences.php
3
BACCHCHAIR
Stafford via Bristol – what can we
learn from Francis?
At first sight The Francis Report on
the failures in Mid Staffordshire
NHS Foundation Trust has
little to do with services to
children and families. In the 453
pages the word ‘child’ is only
mentioned four times and the
18 recommendations contain
nothing specific for children and families.
However, it would be wrong to dismiss this report
as not relevant. It is highly relevant and the lessons
learned are equally important for children’s
services, particularly those being provided on an
interagency basis.
Introducing professional regulation for those in management
roles would be expensive, but might ensure their competence and
enable the incompetent to be removed, but would not tackle the
fundamental problems of performance of whole systems. That
requires the cultural change that Francis is recommending.
There are interesting similarities with Sir Ian Kennedy’s review
of cardiac services in Bristol (1998–2001) – indeed some of the
recommendations are almost identical. I guess the rest of the NHS
did not heed the lessons about leadership, accountability and putting
patients first – so let us not ignore the messages from Robert Francis
that are relevant for children’s services.
Take another step back and consider the development and impact
of ‘regulation’ within the NHS. Increasingly assurance is seen as the
responsibility of outside agencies, whether this is the Care Quality
Commission, Monitor, OFSTED or others. How wrong! In midStaffs they all failed to identify major problems and we have all seen
how external regulators reach different conclusions based on their
individual methods and perspectives. Regulators tend to examine
the system from the perspective of services or organisations, rather
than from the perspective of users and therefore fail to recognise the
gaps between services! Once again, a fundamental cultural change
needs to occur so that everyone working in the system is responsible
for assurance and improvement and it’s not seen as an external
regulators responsibility alone. It could be argued that external
regulators should inspect whether local clinical governance/assurance
systems are indeed driving local quality improvement, and if not,
provide support based on experience from elsewhere to enable the
development of better quality improvement systems.
I regularly receive telephone calls from BACCH members asking
‘what should I do?’ on a range of management issues. Most
frequently callers complain that their ‘managers’ are not listening
and wanting to make changes that do not seem to be in the best
interests of children and families, often justifying their decisions on
financial grounds or having to meet targets. All this in an era where
continuous quality improvement, ‘no decision about me, without
me’ and increased clinical involvement in decision-making being the
mantra from the top.
There is a legitimate concern that a huge amount of energy will now
be invested in developing standards and measures that will create
a new bureaucracy and burden for clinicians. While standards and
measures are important, they need to be used selectively – firstly
to recognise where service provision is suboptimal and then used
to identify specific deficiencies, followed by measures to monitor
improvement. Good measures must have meaning, matter to a range
of stakeholders, motivate improvement and be able to monitor
change.
The Francis report plays out the tension between clinicians and
managers in great detail. However, we should not forget that a
substantial proportion of NHS managers started life as clinicians.
So what went wrong, what happened to clinical professionalism and
more importantly how do we put it right? Changing the culture of
the NHS is easy to say, and horrendously difficult to achieve.
It would be tempting to issue national standards and measures (some
would say these are targets) to drive improvements if all services
had the same problems, but they do not. What is needed is a more
nuanced, proportionate and locally sensitive approach. In turn this
requires local clinicians and managers to have a real understanding
of ‘informatics for improvement’ and the challenge of translating
raw data into information that drives knowledge that can improve
practice. This will not happen overnight and will require significant
investment to create the capacity and competence within the system
to understand how it is working and prevent catastrophic crises such
as Winterbourne View or mid-Staffs.
How is it possible in a civilised society that elderly patients were left
without adequate nutrition or hydration, left unchanged, in pain
and without a voice or dignity? And why, even when concerns were
raised, did people not listen, or ignore what they saw or heard? The
answers are complex and inextricably linked with how the NHS is
structured and the culture within that system.
Let us look at ourselves. Clinical directors (CDs) are generally three
year positions, starting with a willing volunteer, but after ten years,
it’s often an unwilling volunteer! Newly appointed CDs inevitably
go off and do anything between one week and one month’s training,
often join a ‘learning set’ and disappear for regular away days.
They come back inspired with some new ‘business management
strategy’ and start to experiment with the system. Unsurprisingly,
there are often unintended consequences which then require further
management. By the end of their three years they are just becoming
competent and it’s time for them to move on! Shouldn’t NHS
management for clinicians be a recognised career path with formal
training to prepare them for medical director, chief executive or
commissioning roles?
Pause for a moment now to consider how the professionalism of
NHS managers assured, improved and regulated. Clinicians have
their professional bodies, for example, the General Medical Council,
the Nursing and Midwifery Council, who hold them to account
4
for personal or clinical decision-making. Increasingly clinicians
will need to be revalidated on a regular basis in order to maintain
their roles within organisations. But who holds NHS managers,
on either the commissioning or the provider side, to account? The
Financial Services Authority can apply sanctions if an individual
fails to meet the expected standards, but the Public Standards
Authority has only just published standards for NHS Boards and
Clinical Commissioning Groups and has no mechanism for holding
individuals to account.
Others would argue that ‘we need to take action now’ and we can’t
wait to develop ‘system capacity and competence’. We had a similar
discussion in the BACCH Executive in December 2012. On the
one hand paediatricians need to develop their management skills,
including those of informatics, in order to develop an appropriate
portfolio of measures that reflect the areas that require improvement
within their own services. No small challenge! On the other hand,
paediatricians without those competencies need standards and
measures to get them started, if only to prevent the imposition of less
relevant measures.
I am reminded of the Chinese proverb ‘give a man a fish and you
feed him for a day. Teach a man to fish and you feed him for a
March 2013
BACCHCHAIR
lifetime’. But without immediate food, short-term survival may
be compromised. In the long term a culture of fishing, based on
knowledge and experience, transferring from one generation to the
next (assuming sustainable fish stocks), is what is required.
With this in mind BACCH intends to:
1. Collate and publish existing standards relevant to the community
child health services.
2. Develop and publish ‘family friendly’ standards and measures
likely to be relevant to the day-to-day work of the majority of
BACCH members.
3. Develop an approach to ‘informatics for improvement’ that
complements the BACCH Family Friendly Framework to enable
paediatricians to identify the weakest links in pathways as the
starting point to improve outcomes.
So in summary, we need an NHS culture that:
1. Translates human rights into a very practical agenda that has
a positive impact on a day-to-day patient care. Three themes
immediately spring to mind.
a. increasing participation (in clinical decision-making, in
service provision and priority-setting),
b. a greater emphasis on prevention (starting with a greater
emphasis on protection and promotion to prevent future
problems) and
c. provision based on pathways.
2. Better understands the role of informatics within clinical
governance and regulatory systems, in order to create meaningful
feedback, which in turn drives improvement. The three priorities
would be
a. understanding patient experience,
b. detecting the weak links in pathways and
c. improving priority setting to improve allocation of
resources.
3. Creates collaboration and learning between
a. different professional groups,
b. different organisations and agencies, and
c. commissioners and regulators
to create an alignment and synergy between the various parts of the
system.
As Robert Francis says:
‘People must always come before numbers. Individual patients and their
treatment are what really matter. Statistics, benchmarks and action plans
are tools not ends in themselves. They should not come before patients
and their experiences. This is what must be remembered by all those who
design and implement policy for the NHS.’
The publication of the Francis Report on 5th February almost
coincides with the publication of the Ministerial response to the
Report from the Children and Young People’s Health Outcomes
Forum. The response entitled ‘Improving Children and Young
People’s Health Outcomes: a system wide response’ will be published
on 19th February*. It recognises that too many children are not
getting the care and support they need and sets out the culture that
has be developed in order to improve future outcomes. It will be
essential reading for BACCH members in England – more about this
report and the work of the Forum next time.
*Now available. Improving Children and Young People’s Health
Outcomes: a system wide response available at:
https://www.wp.dh.gov.uk/publications/files/2013/02/9328-TSO2900598-DH-SystemWideResponse.pdf
March 2013
Essence of the Francis Recommendations
The NHS must confront the fundamental issue of poor quality
care and develop practical solutions and ensure their consistent
implementation.
•• Deliver high-quality services to all patients
•• Promote collaboration with other NHS trusts
•• Ensure that all staff are competent
•• Improve participation in audit for all staff
•• Review the management of complaints and incidents
•• Improve the training, appointment, accountability of the
directors of NHS trusts
•• Increase leadership within the nursing profession
•• Ensure there is a clinical voice represented at all levels of
management
•• Review its record-keeping procedures with regular audits
•• Multidisciplinary meetings, on a weekly basis.
•• All staff to work to a published set of principles, focusing on
safe patient care
•• Review the methodologies in use to identify excess mortality
•• Examine of the operation of commissioning and regulatory
bodies
•• Rebuild of public confidence in the NHS
The full report is available at: http://www.midstaffsinquiry.com/
documents.html
Simon Lenton
[email protected]
FROMTHECONVENOR
This newsletter brings you,
besides the 10th anniversary of
the informatics column, the first
chapter of BEST, the BACCH
Essential Standards Toolkit for
community-based children’s
services. This list brings together
existing standards and is crossreferenced to the relevant national legislation or
guidance (in England, though Welsh colleagues
have started on a similar quest).
These are the MINIMUM standards all services should be meeting,
everywhere. The full list of references and relevant extracts for the
more obscure points will be available on the members’ area of the
BACCH website.
This is very much a first step, a statement of irrefutable facts that
can be used to protect services, to complement the RCPCH ‘acute
services’ standards. The BACCH executive naturally plans to issue
further detailed guidance in the near future on how to measure
these standards, analyse and respond to results in order to ensure
continued improvement.
The standards are general enough to be used by paediatricians
anywhere and we look forward to hearing the RCPCH response, as
performance on these will be an essential component of any service
review. But even more importantly, we want to hear of your response
and of your ideas so that you help the BACCH executive build up
a comprehensive quality account based on these building blocks,
particularly on a fully worked up list of national audits for our work.
Then we will really be close to a full ‘toolkit’.
Continues overleaf
5
FROMTHECONVENOR
BACCH will be responding soon to the consultation on the NHS 2013 national outcome measures. It does not appear, on a cursory look, that
the document contains the word ‘child’ or ‘children’, which highlights the desperate need for measures which apply to children’s services to be
made manifest with some urgency. Because children are WORTH it.
Fawzia Rahman
[email protected]
BEST: the BACCH Essential Standards Toolkit for community based paediatric services (February 2013)
Chapter one: standards in existence that apply to all paediatricians
All these standards are CURRENTLY in existence in referenced national documents
a
1
2
3
4
5
6
7
8
9
10
BEST for children standard
Waiting times are met for Generic (non statutory) work i.e.
Referral To Treatment intervals are under 18 weeks
Reports of statutory initial health assessment are available
within 28 days of children becoming ‘looked after’
Medical advice reports for assessment of Special Educational
Needs are available within 42 days of notification by the LEA
Forensic examinations for child sexual abuse are carried out in a
time frame consistent with maximising yield
Forensic examinations are carried out in premises meeting the
standards set by RCPCH
Clinic letters are routinely copied to patients/families
Letters are routinely sent out within 10 working days of
dictation
The service can demonstrate it complies with all relevant
national guidelines
The service monitors patient safety routinely, reviewing
incidents via Trust systems
The service complies with legal requirements for response to
complaints
11
The service carries out surveys of parent & carer satisfaction at
least once a year
12
Children’s experience of healthcare is measured at least once a
year
13
All doctors in the service are compliant with the requirements
of revalidation as specified by the GMC i.e.
i. Satisfactory yearly appraisal
ii. 5 yearly 360 degree feedback
iii. 5 yearly individual patient feedback
The family’s experience of team working is assessed using a
validated measure of integrated care (e.g. the MPOC is a free
validated tool)
14
15
16
17
18
19
20
All paediatricians have access to facilities compliant with the
Royal College of Paediatrics and Child Health (RCPCH)
Paediatricians’ charter at each clinic
The job plans of all practitioners working in the service provide
appropriate time required for clinical activity based on BACCH
job planning guidance & RCPCH charter for paediatricians
The job plans of all practitioners working in the service
meet the Academy of the Medical Royal Colleges (AOMRC)
recommendations on supporting programmed activities
(SPAs) to allow for revalidation, training and other supporting
professional activities i.e.
i. a minimum of 1.5 PA for revalidation activities
ii. additional time for any other supporting activities
iii. 0.25 PA per trainee supervised
The service monitors and feeds back individual activity data to
all practitioners to help them reflect on their performance at
least annually
The service is able to support practitioners in difficulty
according to national requirements
The service addresses health inequalities by
i. Monitoring uptake & outcomes by disadvantaged
groups such as disabled, BEM and deprived children
and families &
ii. Acting upon results
Reference documents & sources
• DH (2012) The operating framework for the NHS in England 2012-2013
• The NHS Constitution for England 2012
• Care Planning Placement and Case Review (England) Regulations 2010
• Department for Education and Skills (2002) Special educational needs: Code of practice
• NICE (2009) When to suspect child maltreatment?
• RCPCH (2009) Service Specification for the Clinical Evaluation of Children & Young
People who may have been sexually abused
• RCPCH (2009) Service Specification for the Clinical Evaluation of Children & Young
People who may have been sexually abused
• DoH (2003) Copying letters to patients: Good practice guidelines
• RCPCH (2004) A charter for paediatricians
• DoH (2008) High Quality Care for All: NHS Next Stage Review Final Report
• Children and Young People Health Outcomes Forum Report
• DoH (2008) High Quality Care for All: NHS Next Stage Review Final Report
• The Local Authority Social Services and National Health Service Complaints (England)
Regulations 2009
• The NHS Constitution for England 2012
• GMC (2012) Supporting information for appraisal and revalidation
• NHS Outcomes framework
• Children & Young People Health Outcomes Forum report
• RCPCH supporting information for appraisal & revalidation
• GMC (2012) Supporting information for appraisal and revalidation
• RCPCH supporting information for appraisal & revalidation
• NHS outcomes framework
• Children & Young People Health Outcomes Forum report
• GMC (2012) Supporting information for appraisal and revalidation
• RCPCH supporting information for appraisal & revalidation
• The NHS Constitution for England 2012
• Revalidation support team: helping doctors to provider safer health care
• NHS outcomes framework
• CYP health outcomes forum
• Woodside, Rosenbaum, King, & King, Centre for Childhood Disability Research,
McMaster University (1998) Measure of Process of Care for Service Providers (MOPC
–SP)
• RCPCH (2004) A charter for paediatricians
• BACCH (2005) Job planning guidance for consultant community paediatricians
• RCPCH (2004) A charter for paediatricians
• AoMRC (2012) Supporting information for appraisal and revalidation
•
•
•
•
GMC (2012) Supporting information for appraisal and revalidation
The NHS Constitution for England 2012
Revalidation support team: helping doctors to provider safer health care
Revalidation support team: helping doctors to provider safer health care
•
•
•
•
•
•
•
Equality Act 2010
DH (2012) The operating framework for the NHS in England 2012-2013
The NHS Constitution for England 2012
NHS outcomes framework & Equality impact assessment
The Marmot Report: Fair Society, Fair Lives
Children & Young people health Outcomes forum report
The Kennedy report: getting it right for children & young people
Fawzia Rahman, Cliona Ni Bhrolchain & Ben Ko, on behalf of the BACCH executive (British Association for Community Child Health)
6
March 2013
CSACNEWS
Report from the College Specialty
Advisory Committee
Developing your career as an SSASG
paediatrician
What is an SSASG paediatrician?
SSASG posts are permanent career grade posts.
They are quite senior positions and this is
reflected in the requirement for at least four years’
experience, with two years in a specialty training
programme (or equivalent experience) to be
eligible to apply.
The long-term options available to SSASG paediatricians are:
•• to remain in the grade, progressing through the incremental steps
until retirement
•• to return to a training grade and progress to consultant level via
CCT
•• to remain in the grade and attain competencies equivalent to
CCT and progress to consultant level by attaining CESR (The
CESR may be in General Paediatrics or, if the applicant has
overseas training or qualifications, in Community Child Health
alone).
What are the options for training or continuing
professional development (CPD) as a SSASG?
All SSASG paediatricians are entitled to time for training or study.
The contract negotiated with the Department of Health allows
a minimum of 1PA but the Academy of Medical Royal Colleges
has recommended a minimum of 1.5 for all doctors to ensure that
the doctor is able to revalidate. SSASGs should also have access to
study leave funding and, at least in England, there are also specific
development funds that can be applied for to support personal
development (information available here: http://www.bacch.org.uk/
training/ssasg_doctors.php).
What can you do to support your training needs?
•• You can join a professional society (like BACCH!). This will give
you access to a group of peers with similar interests, the society is
likely to run educational activities at reduced costs to members,
and it also shows that you are sufficiently interested in your career
to take this step. You might also choose to take on leadership
roles within the society. A list of professional societies linked to
community paediatrics can be found at (http://www.bacch.org.
uk/links/index.php).
•• You can join the RCPCH even if you are not already a member
by examination (http://www.rcpch.ac.uk/member-services/
categories-membership/categories-membership). This fulfils the
same purposes as a professional society but gives you added
advantages. Members are eligible to apply for an ePortfolio
(http://www.rcpch.ac.uk/training-examinations-professionaldevelopment/registration-training/registration-training) and can
become actively involved in College activities. There is an active
SASG committee (http://www.rcpch.ac.uk/member-services/
categories-membership/staff-specialty-and-associate-specialistgrade-ssasg-doctors/s) and increasingly SSASGs are represented
on other committees within the College. There will be a cost to
joining the College and to apply for ePortfolio.
•• How do you find out what to learn? Your main guide should
be the curriculum in Community Child Health (CCH)
(http://www.rcpch.ac.uk/training-examinations-professionaldevelopment/postgraduate-training/sub-specialty-training/
communit). This sets out the main areas that you need to know
about in CCH and is what you will be tested against if you
decide to apply for CESR.
•• How do you learn? There is a wide variety of ways of learning and
you are the best judge of the best methods for your individual
learning style. The College Specialty Advisory Committee
(CSAC) has devised a resource pack giving lots of ideas on how
to attain the competencies set out in the curriculum (www.
March 2013
communitychildhealth.co.uk). Remember that the curriculum
is laid out to cover knowledge, skills and attitudes so you are
likely to need different ways of learning. There are also lots of
different ideas in the RCPCH CPD guidelines too (http://www.
rcpch.ac.uk/training-examinations-professional-development/
continuing-professional-development-cpd/continuing-pr).
You might consider:
•• formal postgraduate courses (MSc, Postgraduate Certificate in
Education)
•• individual study days
•• e-learning (available at no cost through the E-learning for Health
programme, the medical defence organisations, doctors.net, BMJ
learning for example)
•• experiential learning (gaining experience in a particular area e.g.
neurology clinic, audiology)
•• reading books, journals and articles (which may have a quiz or
assessment at the end) or
•• peer review, audit or quality improvement activities which have
an educational component
How can you demonstrate what you have learnt and/
or experienced?
All SSASGs will have an annual appraisal and must show a
personal development plan and evidence of continuing professional
development and benchmarking. Satisfactory appraisal is one way of
showing the level you are working at. At two key points, SSASGs also
have to pass through a threshold to move onto the next increment.
Evidence that you have passed the thresholds, particularly threshold
2, is helpful.
If you have decided to do formal courses, passing the assignments or
examinations at the end of the course will show what you have learnt.
You may be able to benchmark your clinical activity or your case
mix with colleagues. If you apply for CESR then the assessors will
be looking for evidence that the mix of cases you see is equivalent to
that of a consultant. You can do this by showing the number of new
and review cases you see, the type of cases you see and comparing
these with consultant colleagues.
If you are going to apply for CESR, using the ePortfolio as a way
of collecting your evidence can be a significant advantage. The
ePortfolio allows you to map your evidence to the curriculum
(including the CCH curriculum) and also allows you to use the
same workplace based assessments as the trainees. Clearly, if you
are claiming equivalence to the training scheme, it is easier to show
this if you use the same tools. It is also easier to collect evidence
prospectively although it is not essential.
Your named consultant should be able to help you to develop your
skills. If applying for CESR it may be helpful to have a formal
educational supervisor to support you with collecting evidence and
directing your learning. This could be your named consultant, but
it could also be another member of the Department or even outside
the Department who has a particular interest in education and is
willing to provide this support. This is not a requirement but it may
be helpful.
How do I apply for CESR?
There is specialty specific guidance on applying for CESR in
Community Child Health on the RCPCH website (http://www.
rcpch.ac.uk/training-examinations-professional-development/
certification-cct-cesr/certificate-eligibility-specia).
To apply for CESR in CCH alone (known as a non-CCT specialty),
you must be able to show that you have either a non-UK specialist
qualification, or at least six months experience outside the UK in a
related non-CCT specialty.
If you cannot show one of these, i.e. all your training has been within
the UK, the only option currently available is a CESR in Paediatrics.
This requires up-to-date experience of acute general paediatrics
Continues overleaf
7
CSACNEWS
and neonatology equivalent to CCT. These rules prevent many UK
trained SSASGs working in CCH from applying for CESR. The
SSASG community believes this anomaly should be corrected and is
actively campaigning for the GMC to reconsider these rules.
The standard you will be tested against for CESR in CCH is that
of an NHS consultant in the specialty. Briefly, you need to provide
proof of knowledge and evidence from the past five years that you
are working at the same level as a consultant in the NHS. Your
application must show that you have covered all the areas in the
curriculum. Even if your post concentrates on a particular area of
the specialty e.g. Looked After Children, an application for CESR
must cover the whole curriculum with the same depth and breadth
expected of a consultant. We encourage you to contact the Specialty
Training Advisers to seek advice on CESR application (http://
www.rcpch.ac.uk/training-examinations-professional-development/
postgraduate-training/sub-specialty-training/communit). A more
detailed article appeared in BACCH News March 2012.
What options are available if you remain in the SSASG
grade?
SSASGs still outnumber consultants in Community Child Health.
The RCPCH census in 2009 showed that SSASGs held lead roles
in many departments (18.5% of all lead roles were held by SSASG
paediatricians), including Adoption and Fostering, Looked after
Children, SEN and Named Safeguarding roles. There is no reason
why a SSASG cannot become the clinical service lead (I know of at
least two examples), an appraiser or indeed a SSAS Tutor.
What can consultants do to encourage SSASGs?
•• All SSASGs should have a named consultant who provides
supervision and support. Clearly the level of supervision will
vary according to seniority, with Associate Specialists and senior
Specialty Doctors requiring very little.
•• For those working towards CESR, the department might offer an
educational supervisor.
•• All SSASGs should have a fair allocation of funded CPD and
study leave.
•• The department should be able to provide and encourage formal
and informal learning opportunities including an opportunity to
attend specialist clinics where applicable.
•• Departments should encourage the SSASG to seek advice early
on any CESR application so that the doctor collects the right
amount of the right kind of evidence to be successful.
But remember…
The SSASG grades are career grades. To develop your career you
will need to have initiative and be self-starting in order to make
progress. There may be initial costs e.g. joining the College or
funding an MSc course, but these may be offset by increased earning
power later. Community Child Health has always valued its SSASG
paediatricians and as a group they tend to be more satisfied with their
choice of career than SSASGs in other specialties. Enhanced training
and continuing professional development can only increase that
satisfaction.
Dr Cliona Ni Bhrolchain
[email protected]
New Faces at the CSAC
New Specialty Advisor needed
Are you interested in training and assessment? Would you like
to join the CSAC to support and advise trainees and assess
CCT and CESR applications?
Dr Elaine Lewis will be coming to the end of her five-year term
shortly and we will therefore be advertising for a new Specialty
Training Advisor in the next RCPCH newsletter inserts. Please
watch out for the notice and apply if you are interested.
8
I am pleased to introduce two new faces who have already joined the
CSAC. Bethan has joined us as the Trainee Representative:
My name is Bethan Williams and I am an ST6 in Community
Child Health in Wales. I am delighted to be the new CSAC Trainee
Representative and am looking forward to this new challenge. I
hope to represent the needs and perspective of trainees and facilitate
communication with the Royal College.
I would like to thank my predecessor Charlotte McAuley for her hard
work in updating the resource pack and wish her the best of luck in
her new consultant post. One of my primary roles will be to keep the
resource pack updated to ensure all trainees have access to the best
materials to achieve the highest quality of training. The resource pack
can be found at www.communitychildhealth.co.uk
I look forward to helping shape and improve the Community
Child Health Curriculum. With the new START assessment now
underway I will endeavour to feedback any issues regarding this from
trainees to CSAC and vice versa.
If anyone has any training issues they would like me to address with
CSAC then please contact me at [email protected] or
speak to me at the National BACCH Trainees Day in April.
Our new Specialty Training Advisor, replacing Angela Moore, is Dr
Amgaad Faltaous, who will introduce herself in the next edition.
CPD Update
I attended the CPD Sub-Committee
meeting as the BACCH representative
on 11th February 2013. This was
actually the final meeting of the CPD
Sub-Committee as the CPD and
Revalidation Sub-Committees are
due to merge in July 2013. BACCH
will continue to have a nominated
representative on this new committee.
Matter arising from the CPD Sub-Committee meeting:
•• The 2013 CPD guidelines are now available on the CPD website,
and this contains examples of a range of educational activities
which qualify for CPD.
•• The biggest change is that there will no longer be an annual audit
of the CPD credits claimed for 5% of those registered for CPD,
as it is felt that the Appraisal and Revalidation processes should
monitor individual doctor’s CPD. No doubt this will be a relief
to many community paediatricians, but it will still be essential to
maintain your CPD diary accurately, and to collect appropriate
evidence of your attendance at education events.
•• As the CPD audit will be discontinued, changes will be made to
the CPD online diary summary certificate so that it no longer
includes details of such audits carried out over the past five years.
•• The CPD team will work to prepare a Myth Buster Guidance or
summary of the common errors made by those claiming CPD
credits which when completed will be available on the CPD
website.
•• Each CPD activity should be accompanied by an activity review
summarising the learning of the event. It is important that these
activity reviews are prepared shortly after an education event
to ensure that they accurately reflect the learning. Consider the
possibility at the end of Team Educational meetings of taking a
few minutes to reflect as a group on the learning of that session
and recording this possibly on a hand held device.
•• Paediatricians are encouraged to include a minimum of 10 but
up to 20 credits per year for Personal CPD which is defined as
activities where the physician determines the educational benefit
usually recording this as a reflective note. Reflective notes can
March 2013
SSASGNEWS
be used to record the learning from clinical interactions, private
reading or interactions with colleagues – a proforma is available
as part of the CPD diary. A reflective note should normally
qualify for one CPD credit. Examples of potential Personal CPD
activities are available in the online CPD system.
•• The RCPCH is keen to encourage more Paediatricians to join
their CPD scheme – this currently costs £130 per annum if you
are not a RCPCH member and this is tax deductible.
Paula McAlinden
BACCH Representative, RCPCH CPD Sub-Committee
SSASGNEWS
Hello again!
I have three things to mention in this BACCH
News. The first is to point out that the focus
of the CSAC (College Specialty Advisory
Committee) report is on SSASG career
development and I would highly recommend
that you read this excellent article which I
am delighted that Cliona Ni Bhrolchain has
written. The second is that Christine Arnold
has written a short piece regarding her role as a SSASG representative
on CSAC and these two articles complement each other. And so,
when you have finished reading what I have to say, may I suggest that
you turn immediately to Christine’s and Cliona’s articles?
And the third thing is that my term as SSASG representative finishes
this autumn and BACCH is seeking nominations for this post. The
main duties are:
• To respond to queries about issues specific to the SSAS grades
• Contribute an article to the newsletter when relevant to address
current topics of interest and concern
• Present a brief report to the AGM – this is held during the
Annual Scientific Meeting
• Provide a voice for the SSASG members of BACCH
So please do consider applying. If you might be interested, contact
me to find out more.
Thérèse Bennett
[email protected]
THE ROLE OF THE SSASG REP ON CSAC
Therese Bennett asked me to write a short piece regarding my role
as a SSASG representative on the Community College Specialty
Advisory Committee (CCH CSAC). This is the first article I have
written for BAACH, although I have been actively involved with
the SSASG Committee since 2008 in my role as BACCH Council
Representative, and since October 2011 as a co-opted member of the
Community Child Health College Specialty Advisory Committee
(CCH CSAC).
I was really pleased to be invited to attend the CCH CSAC
Committee meetings and I’d like to thank the Chair Cliona Ni
Bhrolchain, and all the Committee members for their warm welcome
and interest. I wanted to find out more about the purpose and
function of the CSACs, and how they could benefit the education
and training of SSASGs.
Specifically I was asked to evaluate the potential benefits of a SSASG
representative on this particular CSAC, as Community Child Health
March 2013
is the largest subspecialty in Paediatrics, and also employs the greatest
number of SSASGs, 60% of the CCH workforce overall.
What is the function and purpose of the College
Specialty Advisory Committees?
The College Specialty Advisory Committees (CSAC) are subcommittees of the Royal College of Paediatrics and Child Health
(RCPCH), Education and Training Quality Committee (ETQC).
Each CSAC has been established to offer expert advice for each
paediatric subspecialty within a GMC recognised training programme
overseen by the RCPCH.
Purpose
To supervise the development and delivery of training and assessment
standards set by the RCPCH in a number of key areas.
The function and purpose are very relevant to SSASGs.
What did I find out?
Overall it was an extremely valuable experience, and I learnt a
great deal not only about the CCT training structure and CCH
Curriculum, but about the different roles of the CSAC Committee
members, and how these interact with other College Committees,
and also the Regional Advisers, Heads of Schools, and Deaneries.
The recent Trainees’ survey struck a chord in that it highlighted
that many issues raised by Trainees in their working lives are similar
to those experienced by SSASGs in terms of work life balance,
appropriate training and use of skills, access to study leave and so on.
The support provided by CSAC for Trainees is clearly an important
element.
http://www.rcpch.ac.uk/system/files/protected/page/Trainee%20
Survey%20Report%2022%2010%202012_1.pdf
If you have had a look at the BACCH Training site recently you
will have seen that there is a resource pack developed by Charlotte
McAuley. Although initially aimed at Trainees it provides practical
advice on achieving Level 3 competencies in CCH and should be
useful for SSASGs as well.
The current Terms of Reference of the CSACs do not reference
SSASGs specifically, and there is scant mention of CESR save for
assessing applications. The Terms of Reference are currently being
revised, and I’m pleased to report that the SSASG Committee has
been consulted and has responded to the draft Terms of Reference
and related job descriptions for the Committee members.
Conclusion
I definitely think there is a potential benefit for a SSASG presence
on the CCH CSAC in areas such as advocacy, promoting the
grade, developing practical resources, data collection and providing
a SSASG perspective on training and assessment issues including
monitoring quality and standards of training.
However, this will depend on a number of factors including revision
of the Terms of Reference and the role of SSASGs in the paediatric
workforce of the future.
The SSASG Committee has recently submitted a paper to the
RCPCH Executive Committee on SSASG roles in Paediatrics asking
for a strategy to be developed for supporting SSASG education,
training and career development, and publication of College
Guidance. A response is awaited and, depending on the outcome,
will inform further development in this area.
Finally I am coming to the end of my time as a SSASG Committee
member. BACCH and RCPCH need motivated SSASGs to come
forward and contribute to BACCH and RCPCH Committee work.
It’s interesting and varied and you really can make a difference. Please
consider applying!
Christine Arnold
[email protected]
9
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10
March 2013
BACCHVISUALIMPAIRMENTSPECIAL
FLORENCE’S STORY
As I battled through the doors of the hospital, I
needed air. I couldn’t breathe. I needed to run.
Run as fast as I could, scream, and cry … WHY?
Why us? Why her?
We had just been given the devastating news that our baby couldn’t
see a thing. Her precious little world was black. A black hole filled
only with sound and touch.
Upon our arrival at the local
hospital, we were met by
the ophthalmologist and
he spent around two hours
examining Florence. My
world was about to collapse.
No eyesight, no pupils, eyes
undeveloped and yet another
referral but this time up to
London, to Great Ormond Street and Moorfields Eye Hospital.
Florence was a surprise conception, but a very welcome and wanted
one. Through what seemed a fairly easy going pregnancy, as like any
expectant mother I had the normal worries. Was everything going to
be OK, were there going to be two arms and two legs? The thought
of under-developed eyes and no sight never entered my head.
As time went on, I grew angry at the thought of our baby having
spent so long, alone and in darkness. Having been assured time and
time again that she was just sleeping lots, I didn’t pick her up a great
deal other than to feed. The only comfort I was able to encourage
myself with, was that she would have heard and sensed her loving
family around her.
On March 16th 2010 our beautiful bundle of joy entered the world,
kicking and screaming. My world felt complete, but nothing could
have prepared me for what was to come in the months to follow.
I was booked in for a planned caesarean section. Florence decided to
bless us with her presence the evening prior. From that moment, I
knew she was strong, a fighter.
It left me empty and full of guilt. I had let her down; I should have
been holding, soothing and comforting her so much more. In those
first 10 weeks of life, she needed to know life was full of love, not
darkness. I felt extremely let down by the system including all those
involved in her care, up until the point of our visit for reflux!
Throughout the following days on the Maternity ward, all the regular
newborn checks were carried out, concluding everything was fine
even though Florence was born with what looked like conjunctivitis.
The one thing that stands out in my mind, which never did seem
quite right, was her eye tests.
We went on to attend our many appointments in London being
given the diagnosis of:
Bilateral dense cataracts
Bilateral microphthalmia
Bilateral anterior segment dysgenesis
Florence was also diagnosed with glaucoma in her right eye last year.
We had been assigned a trainee paediatrician who struggled to
examine her eyes as they were so stuck together. After her first
attempt, she signed off one eye as being completely normal including
the presence of a red reflex but was unable to examine the other. She
requested we stay overnight and see her again in the morning. Upon
examination the following day, she again concluded everything was
fine and signed Florence off as having very healthy, normal eyesight.
In the weeks to follow, Florence never opened her eyes. I sought
advice from all professionals involved with her early care, including
four visits to my GP, querying the fact her eyes were so encrusted
and not opening. Each time I was assured everything was fine, that
she was a newborn, that being born five weeks early would explain
the lack of awareness! I knew something wasn’t right, already being a
Mum of two, yet no one seemed to listen.
At approximately ten weeks old, I took her to my GP’s surgery in
regards to reflux. We saw a locum doctor whom we hadn’t seen
before. Following his examination for reflux, he said ‘What’s wrong
with her eyes?’ I was delighted. At last…someone had noticed.
Someone else on this planet saw they were not normally functioning
eyes. He proceeded to have a good look at them and wrote a referral
there and then to be seen immediately by an ophthalmologist.
At this time Florence was under private health care so we were
fortunate enough to be able to be seen the following day at the
private hospital.
I will never forget the look on the ophthalmologist’s face, after
examining Florence. He looked shocked and seemed unsure as to
how to communicate with us. He left the room for some time and
upon his return, explained that he had re-referred us to a paediatric
ophthalmic surgeon at the local hospital and that we were to drive
there immediately. He wasn’t actually in clinic but came in especially
to examine Florence. At that moment, I knew it was serious. I was
petrified, an immense feeling of nausea and heartache. The only
information he was able to provide was that he could not see any
pupils in Florence’s eyes. No red reflex, just dark little windows to a
beautiful soul.
March 2013
We were initially advised not to risk the surgical removal of the
cataracts as they were so dense. They had been left too long and the
risk of losing the eyes completely was extremely high. The optimistic
chance of gaining very limited sight was extremely low. Without
hesitation we decided that the risk had to be taken. To gain even a
little light for Florence, would change her world. All I could hear was
a teenage girl asking me ‘why? Why didn’t you even try Mummy?’ 15
years down the line. It was imperative the surgeries on each eye took
place immediately.
This had an enormous effect on our immediate and extended family.
Our two other children, Jake who was nine at the time and Phoebe,
four, were devastated. The birth of their baby sister was such an
amazing and exciting time; somebody had taken a pin and popped
their bubble. Neither of them could understand how and why. They
saw their parents broken, unable to answer their questions. The
feeling of elation in our home had diminished.
Florence’s father and I did our best at home, attempting to keep life
as normal as possible. Giving time, energy, love and support to all
three children. I’m not sure we did a good job. When I look back, in
hindsight I was absent, numb, lost and broken.
I realised that Jake felt embarrassed. Being of a vulnerable age made
it hard for him to cope and to understand why his brand new little
sister wasn’t ‘normal’. I became aware of this when I went to collect
him from school one day and he asked me not to go to his class door
with Florence. Something I had always done every school day. It
seemed hard for him when his peers asked him questions and like us,
he had no answers.
Phoebe would constantly ask ‘When will Florence’s eyes get
better?’, ‘why can’t she see?’ Their love for Florence was certainly
unconditional but it didn’t take away the pain and devastation they
felt, for numerous different reasons. I’m sure there are still a lot of
underlying emotions unspoken!
Florence’s father and I grew unexpectedly distant. We dealt
with Florence’s diagnosis in different ways; the incapability of
Continues overleaf 11
BACCHVISUALIMPAIRMENTSPECIAL
communicating our separate
devastation has since been
one factor leading to the
breakdown of our marriage.
I spent many months numb,
angry and so very sad, he
spent months disbelieving;
he would by no means accept
the diagnosis. On reflection,
I think we were both quietly
blaming ourselves. We seemed so alone in the world, seeming like
we were the only ones this had happened to. Was it my fault? Had
I done something throughout pregnancy? There was no one to talk
to, turn to or explain the medical details in layman terms. I had been
bamboozled by all the information. Not having a great knowledge of
the basic, normal human eye, let alone one with four defects.
I spent hour upon hour on the internet looking up facts, researching
every avenue I could think of from basic facts to treatments around
the world. I would arrive in London with a notebook, with lists of
questions I needed answered. My questions seemed endless but I felt
it was my subconscious way of dealing with my grief. I couldn’t find
acceptance until I understood the facts, the reasons, the hope and
possibilities or future outcome. I was mourning my child’s eyesight,
the biggest loss of my life. This immersion in research helped me
through.
From the moment of Florence’s diagnosis, we were offered no
emotional help and support in any way. It felt like we had been sent
home with our blind baby and just expected to deal with it and get
on with it. A great feeling of pessimism and guilt was present. There
was no follow-up from any health professional locally for some
time. No offer of emotional or factual support, counselling, advice
or written information. I feel the lack of support in the early stages
prolonged my transition period to a mother of a child with a Visual
Impairment.
I recall finding it very hard to come to terms with not only the fact
Florence was blind but that my life had changed forever as a mother.
The needs and expectations had changed dramatically. We choose to
be mothers for the rest of our lives when we conceive but this seemed
to take me into a different world. I was feeling suffocated.
The positives that have come from Florence’s arrival come in
abundance. Other than being able to give her my own eyes, I
wouldn’t change her for the world. Florence is now nearly three years
old, full of life and energy. She is strong, determined, confident and
extremely happy. The removal of the cataracts was successful in both
eyes. Florence became light sensitive, more alert and responsive and
although her vision is extremely limited, she now uses what she has
to the best of her ability. Many aspects of her development have been
delayed, yet she has had the strength and determination to overcome
most obstacles and deals with life in an amazingly optimistic
manner and always strives to do her best. She copes with every day
disablements in her own way, in her own world. The most positive
part for me as her mother, is to have the privilege of watching her
blossom into whom she is today. She is an inspiration.
battle for help, even at this stage. Whether that is emotionally, for
practicalities or financially, to supply and support Florence with the
facilities that are required to cater for her visual impairment. Over
time it has become very apparent that had Florence been physically
disabled alongside her visual impairment, help would be more readily
available.
The economic climate seems to have had an adverse effect on
Florence’s support in terms of continuity of services. Following a
very lengthy wait for professional services such as Portage and STAVI
(Specialist Teacher Advisors for Visual Impairment), there have been
many cut-backs affecting not only the consistency of visits but also
the staff changes. Both of these factors have had an effect on the
routine and Florence’s opportunity to build strong relationships with
the people involved with her care and progression.
I found STAVI very helpful in the early stages. Providing
information, explanations of medical terms and offering to research
certain aspects of Florence’s condition. They have provided me with
useful advice in promoting delayed development and have offered
certain toys and equipment for Florence to use. I am currently in
the process of preparing Florence for nursery. I have received a lot of
support from Florence’s Teacher Advisor in terms of communication
with the nursery, providing them with information and ideas to
enhance Florence’s transition into a social setting. She will be visiting
Florence in her setting, ensuring Florence’s needs are met and the
safety standards are in place.
I have also received occasional support from the Mobility Officer,
which has been reassuring and helpful. I have been advised this will
be much more frequent as Florence becomes older. She too, has been
fantastic in regards to the nursery setting. Accompanying me to a
meeting and inspecting the areas Florence will use in her sessions,
advising of any changes and adaptations that will be necessary to
ensure her safety.
Portage I found extremely beneficial in the earlier stages rather than
more recently. They provided me with ideas to enhance Florence’s
development and provided very basic equipment that optimized fine
motor skills. Ultimately, these three services have assisted in teaching
me how to teach Florence.
The local Early Support team have been helpful throughout the last
two years, offering management of Team Around the Child meetings,
enabling the professionals involved with Florence to come together
and review progress and ideas. I also utilized a Young Carers scheme
in 2011 for Jake, although he didn’t find this overly beneficial.
Within the first year, I contacted many Visual Impairment Charities.
I was offered support, information and advice from the RNIB,
The Eyeless Trust and MACS. I found them all to be exceptionally
informative, friendly and available. MACS (Microphthalmic and
Anophthalmic) have helped us immensely and are whom we have
the most contact with. They have been tremendous in offering social
events for not only the children with related eye conditions but
siblings and families are equally involved and welcome.
For Jake and Phoebe, I feel it has been tremendously significant in
the awareness of disability, whether that be with Florence or anybody
else. They are extremely protective of her and Florence has given
them an early journey in life, ‘acceptance’. Learning to realise that
things happen in life that we have no control over, cannot change
and just is! I feel as time has gone on, they have learnt to understand
and accept, Florence is Florence.
The care from Florence’s consultant paediatrician has been
impeccable throughout. Initially our visits were relatively regular
but have become more occasional as Florence’s progression
and development have advanced. These are the only medical
appointments that Florence and I attend in which I feel relaxed,
heard and unhurried. The support and advice is informative, referrals
always followed up and she seems gladly available with advice if any
concerns arise.
I have become more optimistic with time, slowly learning how to
gain the support that is needed not only for Florence but us as a
family unit. It is particularly exhausting always having to seek and
Throughout my entire experience as a mother of a Visually Impaired
child, I have ridden a roller coaster. As I boarded the ride, the
operator disappeared and I don’t think he’s coming back…yet as time
12
March 2013
BACCHVISUALIMPAIRMENTSPECIAL
goes on, I get more used to the ride and
it’s becoming more bearable as each day
passes. Yet, as I watch Florence blossom,
I realise I love it and wouldn’t change it
for the world. She’s perfect and so is my
ride. (Just have to pinch myself sometimes
to remind myself!!!) Acceptance has been
my biggest journey throughout this
experience.
IDEAS FOR IMPROVEMENTS
•• Trainee Paediatricians should be
monitored extremely closely and seek senior advice if even
slightly unsure.
•• GPs, Nurses, Midwives and Health Visitors should have more
understanding and knowledge of eye defects. Together with the
ability to detect abnormalities.
•• At the point of final diagnosis, counselling should be offered to
the parents and siblings immediately, with follow up counselling
if and when needed. (Something my two eldest children and I
would benefit greatly from at this point.)
•• Basic printed text, illustrations and explanations offered if needed
as to the workings of the eyes. (A lot of the general public have
little understanding of anatomy/biology.) Together with more
specifically related information for individual diagnosis.
•• TIME. Just simple time from somebody who is medically
qualified to explain whatever you need to know without judging
or rushing.
•• Ensuring certain services, are put into place as early as possible.
(We waited 13 months for Portage! Far too late.)
•• Information on charities should be offered as early after diagnosis
as possible. This would enable parents to seek advice, ask
unanswered questions but more importantly know that they’re
not alone.
•• Some initial home help (if needed or wanted) for help with
simple everyday chores from a carer of some sort. (Personally,
I was extremely overwhelmed with coping generally. Sleepless
nights with a baby, siblings, diagnosis, cooking, cleaning etc. At
this point I wanted to shut down and shut off.)
•• More frequent visits with services such as Portage and STAVI
•• A service would be helpful to advise to what benefits you may be
entitled to. (Blue badge, DLA etc.)
Pip Wilson-Heffer, Hampshire
Lewisham Developmental Vision Clinic
– A Description of the Service
In November 2006 our multi-agency children’s centre, Kaleidoscope
opened in Lewisham. Child development and disability health
services are co-located with other key children’s agencies, affording
many benefits for co-working. We piloted our multidisciplinary
(MD) Developmental Vision Clinic (DVC) in 2007 and have held
a monthly clinic since January 2008. Our qualified teachers for
children with visual impairment (QTVI) and senior orthoptist from
Kings and Lewisham Hospitals join our paediatric occupational
therapist and community paediatrician. We have been pleased with
the positive impact of this teamwork, unexpected in some respects.
We are grateful to colleagues, generous with their time, who inspired
us during our visit to their DVCs at Derby City General, the Wirral
and the Hospital for Sick Children (GOSH) in 2008.
March 2013
Background
The NSF’s Standard 8: Disabled Child1 (2004) places expectations
on district services to provide MD assessment, early intervention,
advice and support close to home for the majority of children with
disability. It based recommendations on related policy work2,3 and
the Early Support programme soon followed.4 Assessment, advice and
follow up of the relatively small group of children with significant
visual impairment (VI),5 including cerebral visual impairment –
who so often have other disabilities – present challenges to the
typical child development service which, though specialising in
child development, does not typically have wide experience in the
developmental assessment of a child with severe VI and the related
expected impact on developmental progress. Assessment typically
is less effective when not performed by the MD team. With these
challenges in mind, a particularly detailed Early Support resource was
developed for parents of babies and children with VI working with
their TVI and team around the child.6
The children we see
Isolated severe VI is very uncommon, 4–6 children per 10 000.
However, VI found in association with acquired or congenital
conditions compromising brain function – including cerebral visual
impairment, CVI), a major problem for so many children with
cerebral palsy – is much more common: the GOS team quotes an
VI incidence (all causes) of 19 per 10,000. A district with 60,000
children 0–16 would expect to have 100–110 children with
significant VI.
For our DVC, the children are selected by the VI team, who
inevitably know them already and can judge whether the DVC
will give added value to the management plan. We are flexible, but
we expect children to already have had an ophthalmic assessment,
and that any visual diagnosis will already have been identified, and
correctable refractive errors managed. Many would still be under
an ophthalmologist. Our clinic is not a diagnostic service. Rather,
we offer an assessment of functional vision, observing abilities and
difficulties and with the intention of informing strategy both in the
home, the community and in the nursery or school. The children fall
into the following groups:
1. Known VI, concern about other aspects of development (e.g.
physical disability or impaired social communication) and a
question about home/school management or about the degree the
VI is impacting on other aspects of development.
2. Those with a severe physically disability where assessment of
functional vision is very difficult, and a traditional hospital vision
clinic has insufficient time and teamwork to complete the picture.
3. Some children are selected at the VI teacher’s or orthoptist’s
discretion because MD team liaison would be particularly helpful
to the child’s management: e.g. unusual visual behaviour with a
differential diagnosis of visual impairment or autism.
4. Unexpectedly, there have been children, particularly in the
severe learning difficulties schools, known to be severely sightimpaired, where there are inconsistencies in management in the
school between health and education staff: the DVC has proven
useful in taking the team to the SLD school and assessing those
children, most usefully with teaching staff and therapy team
present, and demonstrating to everyone’s satisfaction what the
child’s visual function is. Sometimes this has meant reinforcing
that the child is not making use of vision in classroom learning
and requires an educational curriculum for the blind child –
notwithstanding some visual interest or awareness of gross visual
stimuli in terms of contrast or movement which the child may
still benefit from in leisure
The combined specific assessment and advisory skills of teacher,
orthoptist and OT complement each other very well and the
developmental paediatrician contributes medical and developmental
knowledge and skills, including experience working with and
counselling the parents of children with complex disability.
Continues overleaf 13
BACCHVISUALIMPAIRMENTSPECIAL
Outcomes: advice on developmental diagnosis
and management in context of VI
•• Clarity on what visual function is present and how to optimise this:
advice in terms of context of other disabilities, environmental
adaptation, motivation for the child.
•• Clarification on the interplay between VI and other disabilities:
whether or not co-morbid ASD and VI; the impact of dystonic
CP or field defects (hemianopia) and reappraising visual function;
understanding complex squint and/or nystagmus and impact on
visual interest; tonic head posturing or use of head position to
achieve a null point to optimise visual function with nystagmus.
•• Advice on strategies for the parent at home and for education
management: e.g. being specific on picture and font size, and
content of visual strategies for a child with both autism and
albinism
•• Support for and advice on teaching strategies based on an accurate
assessment of the child’s functional vision, applied to activities of
everyday life – at home, in nursery or school
Parents have been grateful for the time and the team approach
afforded them in explaining their child’s needs and the plans to
meet them. Attention to daily living activities is appreciated. By
creating the DVC multi-disciplinary team, vital networking and
information sharing between hospital, sensory teachers, therapists
and schools has improved. Care plans from the hospital Vision Clinic
are more likely to be implemented and reviewed. The TVIs and
orthoptists are mutually dependent for success and have direct lines
of communication. A care pathway is created that goes well beyond
the hospital clinic. OT involvement is very helpful on many levels:
ensuring the environment enables the physically disabled child to
demonstrate their abilities; to ensure a focus on activities of daily
living; to assess the child’s developmental profile including manual
dexterity, confidence, motivation and eye-hand coordination; and to
contribute to the care plan. A good MD assessment underpins strong
team recommendations, which in turn help the TVIs in working
with school teachers who need information to understand their
pupil’s needs and support to work with the child with VI in their
class. Some children whose needs are very difficult to accurately assess
are offered a more effective developmental approach to assessing
their needs over time. The DVC is greatly enjoyable environment
to work with children who deserve excellent team work. It is also a
useful learning opportunity for both qualified staff and trainees to
experience – medical, sensory teachers, nurses and therapists. Future
plans include auditing the work of the DVC, to examine parental
and team experience of the clinic and impact of assessment and
advice.
14
Tony O’Sullivan, Community Paediatrician
Marion Ball, Eileen Clifford: Qualified Teachers of the Visually Impaired
Gemma Powell, Advanced Orthoptist – Glaucoma
Marcia Brand, Highly Specialist Paediatric Occupational Therapist
Harry’s Story
Summary
Characteristics of children seen in the DVC first year
(may be multiple)
Children seen first year
Severe/profound bilateral VI – incl CVI (4)
Moderate bilateral VI
VI – other/undetermined at time
Severe learning difficulty
Moderate learning difficulty
Learning level unclear or mainstream
Identified brain injury: birth/prematurity (4), cerebral
thrombosis (1), NAI (1)
Cerebral palsy/motor disorder
Autism (two with co-morbid albinism and ASD)
Epilepsy
Nystagmus
Other medial diagnoses: lissencephaly (1), kernicterus
(1), hydrocephalus (2)
Other visual diagnoses: gaze palsy (2), glaucoma (1),
retinal dystrophy (1)
1. NSF for Children and Young People and Maternity Services. Standard 8: Disabled
Child. Department of Health, DfES. 2004
2. Right from the Start Report. SCOPE 1994
3. Together from the start. Department for Education and Skills, Department of
Health 2003
4. Early Support Programme for young disabled children and their families. DfES/
DCSF 2004
5. VI terminology: sight impaired (partially sighted) and severely sight impaired
(blind)
6. Early Support, The Developmental Journal for babies and children with visual
impairment. DfES 2006
Harry has a visual impairment
and his Mum, Karen, spoke to me
about their experiences.
N=21
How did you find out that Harry had a visual
impairment? What was the process like for you
as a family? What support was provided?
Harry was born 11 weeks premature and
suffered a bleed on both sides of his brain
which in turn caused right sided hemiplegia
and hydrocephalus. Initially we were sent to the eye clinic because
it was observed that Harry’s right eye was turning in. He would
have been about 12 months old at this time, so it was very difficult
to carry out an accurate sight test and as a result a round of routine
patching was required. After much bribery to enable patching to
happen, his eye was not turning in quite so much. We continued
with the visits to the optometrist and it slowly became easier for
them to test Harry (lack of concentration when there were workman
outside the window didn’t help either). After only a few visits it
was diagnosed that Harry had a wobble in both eyes (I cannot
remember the name for this). This was due to optic nerve damage
caused from hydrocephalus. After a number of visits from the age
of five it was becoming apparent that Harry wasn’t seeing as much
as he should. It wasn’t until June 2010 when Harry was seven that
the effects of his visual impairment were known and Harry was put
on the severely sight-impaired register. The degree of Harry’s sight
impairment should be known as they are able to test him more
accurately.
21
8
5
8
12
4
5
10
The staff were always supportive of Harry, warmed to his charm and
confidence and we were amazed that he could remember all their
Christian names. My husband and I would take it in turns to take
Harry to appointments and would receive detailed instructions on
ways to patch Harry, although Harry always managed to stay one
step ahead of us in avoiding anything that related to patching. It
was when the extent of Harry’s eyesight was known that we felt that
the support from the hospital was lacking, they had done their job
by giving a diagnosis and then the rest was up to us.
11
5
5
5
5
4
How does the visual impairment affect the Harry’s life and that of
the rest of the family?
Harry’s visual impairment affects all the family on a day-to-day
basis whether watching the television to walking in the streets. He
will hold your hand whilst walking, using your body movement to
guide him over the ground especially in strange places. Shadows
and changing light affect Harry’s ability to see uneven surfaces and
this means that he does not go out very often to play in the street
unless we are with him. In familiar areas around the house he is not
March 2013
BACCHVISUALIMPAIRMENTSPECIAL
so reliant on assistance now and will generally entertain himself. All
the televisions around the house have been bought as big as practical
so he can see the screen and play the Playstation with alarming skill
(one-handed). When Harry falls owing to a raised paving stone,
odd step or uneven surface his confidence can sometimes be dented
and he will reach and hold your hand even more, which can be very
restrictive when out and about. We believe that as a result of the
visual impairment Harry has acute hearing so sometimes loud noises
can cause him distress. Like all boys, Harry loves motor vehicles
and when he talks about driving them when he is bigger this tugs
at your heart strings and you live in hope that when he is that age
that medical science has found a procedure or cure to enable him
to live out this dream. Harry is a very happy child and wants to
give everything a go. We try to let him take the lead and help when
required but also at the same time give him his independence, which
is a very fine line.
that someone with DS will not be able to see 6/6 or the bottom
of a regular eye test chart, even with glasses on. While this isn’t a
problem in itself, it does have some consequences in the classroom
environment where fine detail is required, and where concentrated
vision is required for a period of time. While objects of high contrast
can be seen easily (black on white), more subtle differences such as
yellow on white, may be invisible because of appearing the same
brightness. This has practical implications such as the judging of
when a glass of water is full and finding rice on a white plate. It is
suggested that people with DS should not use pencil to write on
paper, but the use of an inky black pen encouraged, and that lines to
write on will need to be made bolder in order to be easily seen.
Fig. 1 High contrast image of homework as seen by a typically
developing child.
Which professionals or services have been particularly useful to you
and why?
The school which Harry attends has been extremely supportive.
The school has been visited by the Teacher Adviser for Visually
Impaired Children who worked closely with the school offering
practical advice, for example, what colour writing to use on the
Smartboard, where Harry should sit in class and the font size for
reading books and computer work. They have also made suggestions
about improvements around the school to ensure that Harry can be
safe and as independent as possible. The County Special Educational
Needs department have also been very supportive and provided
Harry with a computer to aid his learning and have ensured that
this is set up for Harry’s requirements. Regular meetings are held
where all parties attend and ideas on ways to help and assist Harry
are shared and put into place. The school registered Harry with
the RNIB library and both school and home are able to access an
extensive number of books to borrow.
“Without the support of the school our experiences would have been
very different and we may well have felt very isolated.”
Fig. 2 Low contrast image as seen by a child with DS.
Catherine Tuffrey was speaking to Karen Weller, Mum to Harry
Vision in children with Down syndrome
Since the cardiac and systemic complications of
Down syndrome (DS) are often life threatening,
it is hardly surprising that for many young
people, eye care is often an afterthought. This
is compounded by the relatively asymptomatic
nature of visual problems in contrast to some
other challenges a child with DS is likely to face.
However, since developmental challenges affecting language, hearing,
speech and fine motor control are inherent in DS, vision becomes
even more vital for communication than it would be to a typically
developing child. In addition, a young person with DS is said to
be a ‘visual learner’ due to the good visual memory skills that this
group demonstrate – and so as a practitioner, it is important to be
confident that the child has no visual barriers to utilising this ability
for learning and development.
Every child with DS has slightly reduced vision as standard.1,2
Visually this means that both acuity and contrast are affected in
DS. Acuity is generally accepted as the smallest object that can be
distinguished from another at maximum contrast. This is a function
of the resolution of the eye, which is reduced in DS, meaning
March 2013
It was initially thought that people with DS had a neural processing
deficiency limiting vision, but it is now considered that optical
degradation of image quality occurs before the object is imaged onto
the retina.3 Research is ongoing at present into the subtle differences
in shape and configuration of the lens and cornea in DS.
Whilst 6% of typically developing schoolchildren require the need
for glasses to see clearly, in the DS population (and for others with
additional learning needs) that figure rises to 60%.4 It is vital,
Continues overleaf 15
BACCHVISUALIMPAIRMENTSPECIAL
therefore, that children are screened early in life and on a regular
basis to ensure that their learning, communication and lifestyle is not
hindered because of ‘refractive error’.
Strabismus, or ‘squint’, is the turning in or out of one eye, and is
seen frequently in a DS population. Since both eyes are required to
align in order to perceive depth, a child with a squint is likely to have
reduced binocular vision. Activities that require good hand and eye
co-ordination such as catching a ball or threading a needle are likely
to be more challenging.
Keratoconus is an ectasia of the cornea, with an onset at adolescence
or teens, creating changes in the normal collagen distribution, and
causing a cone-shaped area centrally, and DS is a risk factor for
the condition. Keratoconus completely changes the way in which
the cornea bends light, causing high myopia and astigmatism in
mild cases, and multiple images, glare and pain in severe cases.
Keratoconus is visually debilitating and dramatically affects quality of
life – but if caught at an early stage, can be controlled in many cases
using contact lenses, and several therapies are now available to avoid
the need for corneal grafting.
Fig. 3. Graph showing the ‘normal distribution’ of refractive error
in typically developing children (dotted/blue), and a much greater
spread and also greater incidence of high hyperopia in DS.
Significant amounts of ‘long sight’, or hypermetropia/hyperopia
represents a failure of the eye to elongate sufficiently to match
the refractive power supplied by the cornea. Babies are generally
hypermetropic, but this value usually reduces within the first two
years of life as the eye continues to grow and the ocular optics
are fine-tuned. Moderate and small amounts of hypermetropia
is therefore normal in children, and left uncorrected are usually
of no consequence, as the lens inside the young eye will simply
increase in curvature and ‘accommodate’ to make the image clear.
Large amounts of hypermetropia are more difficult to overcome for
sustained periods of time, for example near work such as reading
a book or doing a puzzle – the image is likely to come in and out
of focus frequently as the eye struggles to meet the accommodative
demand – the child is likely to get bored easily, irritable and
concentration will be greatly affected. This is also the case for
typically developing children.
In Down syndrome, these large amounts of hypermetropia are
much more common. Moreover, the ability to accommodate
and focus on near objects is reduced in 75% of the paediatric
population.5 This means that low and moderate hypermetropia may
manifest in children with DS as it cannot be overcome as it would
normally. Even when hypermetropia is corrected with spectacles, the
accommodative deficit may mean near vision remains blurred. This
may be corrected with the use of bifocals, which correct the focus for
near in addition to distance. After a period of wear, some children
will develop accurate accommodation without the need for the
bifocal segment of their glasses, and so bifocals are sometimes just a
temporary measure.6
Myopia, or ‘short-sight’, is experienced when the eye has grown
longer than the optical focus. Images are therefore focused in front
of the retina and the eye cannot compensate for this, resulting in
blurred distance vision whilst often maintaining some degree of clear
near vision. While moderate myopia causes the recognition of objects
and faces to be difficult from a distance, high myopia can make
walking dangerous and seeing facial expressions impossible even
at arm’s length. Development and communication can be greatly
affected by uncorrected myopia and confounded as the degree of
myopia may also increase with age.
16
Inflammation of the eyelid margins is termed ‘blepharitis’, and
may be considered a build-up of bacteria and secretions around
the eyelashes, a low-grade infection. Blepharitis causes crustiness,
oiliness or redness around the eyes and results in itching, rubbing
or watering. This is highly prevalent in DS, in addition to the nonDS population, and is easily treated by soothing and cleaning the
eyelid margins using preparations available from optometrists and
pharmacies. While a chronic condition, a once-daily ocular hygiene
routine typically controls this condition, with much improved
comfort and appearance.
As more is learned about vision in Down syndrome, the clearer
it becomes that regular eye examinations early and maintained
throughout life are vital. Various aspects of vision can be tested from
birth, and glasses or contact lenses can be prescribed even from
this stage. Preferential looking techniques have been designed to
measure vision without the need for any communication from the
patient, and the Cardiff Acuity Test has been specifically developed
for the toddler age group upwards and is widely available. Since
our young people with DS continue to enjoy brighter prospects in
health, education and family life, looking after their visual needs
is an essential part of their passport to good communication and
independence.
1. Woodhouse, J. M. et al. Visual acuity and accommodation in infants and young
children with Down’s syndrome. Journal of Intellectual Disability Research 40 (Pt
1), 49–55 (1996).
2. John, F. M., Bromham, N. R., Woodhouse, J. M. & Candy, T. R. Spatial
Vision Deficits in Infants and Children with Down Syndrome. Investigative
ophthalmology & visual science (2004).
3. Little, J.-A., Woodhouse, J. M., Lauritzen, J. S. & Saunders, K. J. The Impact
of Optical Factors on Resolution Acuity in Children with Down Syndrome.
Investigative ophthalmology & visual science (2007).
4. Woodhouse, J. M. et al. Refractive errors in young children with Down
syndrome. Optometry and Vision Science 74, 844–851 (1997).
5. Woodhouse, J. M., Meades, J. S., Leat, S. J. & Saunders, K. J. Reduced
accommodation in children with Down syndrome. Investigative ophthalmology
& visual science. 34, 2382–2387 (1993).
6. Al-Bagdady, M., Stewart, R. E., Watts, P., Murphy, P. J. & Woodhouse, J.
M. Bifocals and Down’s syndrome: correction or treatment? Ophthalmic and
Physiological Optics 29, 416–421 (2009).
Stephanie Campbell,
Research Associate, School of Optometry and Vision Sciences,
University of Cardiff
[email protected]
March 2013
BACCHBOOKGROUP
Visual Impairment special
There are some characters that are vivid to us long after we have closed a book. When
thinking about books which featured people with sight problems, two immediately
came to mind; Mary and Vedi.
In Laura Ingalls Wilder’s series of children’s
books about a pioneer family, Laura is the
lively daughter of a family who live in a series
of houses in different settings: Little House in
the Big Woods, Little House on the Prairie and
On the Banks of Plum Creek. Her big sister
Mary is more sensible and responsible than she
is and we often feel that Laura is a little envious
of how easily Mary seems to find it to be good.
The two girls often live far from other families
and it is only half way through the 3rd book
that the two girls attend school. Throughout the first three books of
the series we sense how important the sisters are to each other. It is a
tremendous sense of shock at the beginning of By the Shores of Silver
Lake that we learn that the whole family have had scarlet fever, and
that Mary was left blind. During the rest of the series, Mary fades
slightly in the story as the rest of the family have to work so hard at
the practical side of making a living. Remembering the stories I read
and loved as a child what remained for me as an adult was the sense
of disbelief when I discovered that Mary was blind, and the sacrifice
the whole family made to send her away to school in order for her to
have an education. Laura gave up some of her own ambition in order
to teach at school to raise money, and years went by without Mary
visiting home as they couldn’t afford the train fares.
I read Vedi by Ved Mehta when I was relatively
new to community paediatrics. Much of my
work was with children thought to be different
in some way and I was beginning to appreciate
just how widely the same problem could be
perceived by families. Ved Mehta lost his sight
at the age of four following meningitis. This
book is one of a series that he wrote about his
family and tells us of his life between four and
nine years old.
He embarks on the 1300 miles to Bombay on a train with an older
cousin to start at a school for the blind. In India at that time, the
blind were often beggars and his Hindu mother considered blindness
a punishment for sins committed in a previous incarnation. Ved’s
father believed that it was as important for Vedi to get a good
education as for his other children and therefore sent him to live
amongst impoverished boys in a pretty grim institution as this
seemed his only opportunity of appropriate schooling.
Vedi doesn’t really notice the grimness. He finds a kind older boy
who takes him under his wing, and this small, determined totally
blind boy runs everywhere. Just because he can’t see is not a barrier
to his natural curiosity and doesn’t seem to get in the way of his
adventures. The discovery of learning to read Braille is beautifully
described, as suddenly the maddeningly small bumps under his
fingers ‘turn themselves into words’.
March 2013
The author is very good at getting back to the thoughts and feelings
of a young child. Small things are described in great detail so that
it’s easy to imagine the fun he had with running races along parallel
bars, or playing a simple game with soap bubbles under a tree back
in the family’s garden. At the end of the book an adult Ved goes
back to find out what happened to his old classmates. The lucky
ones had earned a living caning chairs, but many of them had died
young. I went on to read the next book in the series to find out
what happened to Ved and how he ended up living in America and
making his living as writer.
Planet of The Blind by Stephen Kuusisto is
the autobiography of an American man with
retinopathy of prematurity. He describes
seeing the world ‘through smeared and broken
windowpanes’. He is able to appreciate the
wonderful colour and shapes that emerge out
of the darkness, but is unable to navigate a
walk down the street. Neither of his parents
really acknowledges his blindness, and therefore
neither does he. He struggles through school,
reading with his one good eye a nose length away from good dark
print. He can only manage this for half an hour at a time and was
consequently always late with assignments. Despite this he carries on
studying even though at times it brings him little more than despair,
headaches and a feeling of inadequacy. He travels to Finland as a
Fulbright scholar where the dark gloomy winter days compound
his problems. All through this book you feel as if he is just about to
discover that his world wouldn’t collapse if he used a white stick, or
admitted he sometimes needed help. Instead as he needs people to
help him go to places, he ‘entices’ them into his plans by suggesting
jaunts and outings. He acts out a charade where he will point out
things he can’t see so that he appears to be sighted, as he feels that
the worst thing would be to be recognised as someone who may need
help. He learns to disguise his impairment, but not how to function
well as an adult with little sight. He is very honest in describing his
self-deception and his fear and it is with relief that towards the end
of the book he begins to use a cane. Eventually he gets accepted to
have a guide dog. After the month long training camp, he and Corky
go home together. His mother feels that it’s sad, as if it means that at
long last he is truly blind. Kuusisto however feels that with his dog
he is ‘a buoyant swimmer, I’m secure as we move where the ocean is
hundreds of fathoms deep.’
In contrast, Peter White who wrote his
autobiography See it my way, is the second
blind son born to sighted parents. They had
been reassured that the chances of having
another child with poor sight was ‘a chance in
a million’ so Peter White blithely acknowledges
that he is ‘indebted to the arrogance of the
medical profession’. The book is dedicated to
Continues overleaf 17
BACCHBOOKGROUP
his mother who ‘followed me to the shops and back but never let on’.
This gives an indication of how it was assumed that with his family’s
support he would grow and learn the same as any other boy but that
he might have to find different ways to do it. He felt that having a
blind older brother was a help, as he was expected to do everything
his brother Colin did. The two boys were very different and Colin
was much more physically confident with an ‘in built sense of
direction’ and no problems learning tasks such as tying shoelaces.
Therefore although Peter found the thought of independent travel
daunting, he knew it could be done as his brother was capably
travelling around the neighbourhood. He therefore couldn’t allow his
blindness to prevent him eventually doing the same.
Throughout the book Peter uses humour and honesty to describe
situations others might have cringed in embarrassment to confess.
On arranging to meet his future wife for a first date at the pub, he
thinks she has stood him up as she waits for an hour watching him
with the rest of the family who had happened to ‘pop in’ before
letting him know she had arrived. Later, after he has walked her
home to the nurses’ accommodation where she lived he wandered
around totally lost in the confusion of hospital redevelopment (who
working in the NHS doesn’t recognise that?).When he eventually
negotiates himself back to the main entrance he finds his father has
come out for ‘a drive around’ and fortuitously ended up just at the
right spot to offer him a lift home.
For anyone who listens to Radio 4, Peter White has a very familiar
voice. It resonates throughout this book. It sounds confident and
content, and despite the passages where he has chosen the wrong
course at university, where he is sitting isolated and despairing back
in his parents’ home as readers we know that in the end he will
succeed in a job which he still sounds passionate about.
The book for teenagers by Andrew Clements,
Things Not Seen, has a slightly different take
on the problems that might be caused by
blindness. The main character Bobby is 15
years old and wakes up one morning to find
that he is invisible. His parents are worried he
will be taken away by government scientists
and used in experiments so he is forced to
stay at home and keep his sudden disability a
secret. He lives in Chicago, which gives him
a curious dilemma. He can go out bundled
up with a hat and a scarf to hide his invisible face, or he has to wait
for warmer weather and go out naked. On his first journey out to
the library he accidently bumps into a girl and he braces himself
for her scream when she looks up and sees his face that isn’t there as
the collision has knocked away his scarf. When she doesn’t react he
realises she is blind. Later during an unexpected warm spell she is
shocked when she stumbles and puts her hand out and touches his
naked chest. She becomes upset that she is being taken advantage
of as the ‘poor little blind girl’ and reacts angrily. All through the
book Bobby makes observations as to how the world treats people
who can’t see. Although he is worried about walking invisibly down
the busy street by her side, in fact people not only give Alicia a wide
birth - they also seem to avoid looking at her.
As well as trying to figure out how he suddenly became invisible, and
whether it can be reversed, Bobby is coping with his parents (who
keep on believing that they know what to do for the best), and his
first tentative relationship with a girl. He sulks and bangs doors just
like any other teenager, tries to tell his parents he doesn’t need them
but is at the same time touchingly grateful for their support There
18
is also an element of child protection as the authorities come round
to try and find out why he has been off school for three weeks but is
unable to provide a sick note.
Almost all the children’s books I found
are American. I was signposted to
them by the National Blind Children’s
Society who have a CustomEyes book
service where they tailor make books
printed with the required font, line and
word spacing and coloured paper to an
individual’s needs. For younger children
Luna and the Big Blur by Shirley Day
describes lots of things that Luna likes,
but she does not like her glasses, even
though she did get to choose the frames. One day she decides not to
wear them, but ends up petting her Mum’s slippers instead of the cat
and stirring the fish bowl instead of her soup. Similarly in Arthur’s
Eyes by Marc Brown, Arthur tries to lose his glasses, but finds out
that life is just too confusing without them. Like Luna he finds it
particularly hard that he is the only one in his family that has to wear
them.
In The Blind Men and the Elephant by Karen
Backstein, six blind men feel a different part
of an elephant and then can’t agree what
an elephant is like. Is it wide like a wall,
smooth like a spear or flexible like a snake?
They argue until the Prince tells them they
must imagine the separate parts fitting
together and they all get to ride the elephant
home. Anna and Natalie by Barbara H Cole
is a touching story about a little girl Anna
who never gets picked for any of the teams
at school (except for the spelling team!). She writes a letter to her
teacher about why she and Natalie should be chosen to take part in
a wreath laying ceremony at the Tomb of the Unknown Soldier, and
it is only in the last pages of the book that we realise that Natalie is
Anna’s seeing-eye dog. The wreath is laid ‘not only to honour the
men who served in World War II but also the dogs that helped them’.
This story acknowledges the sense of being left out a blind child
might feel in a class of sighted children who don’t choose her to be
on the softball team.
Books are often a way that we can help children explore and
understand different aspects of life, and it seemed a shame more
books weren’t found that included characters with visual problems.
Is this because children’s books rely so heavily on illustration that we
have somehow forgotten that story telling for centuries relied on our
ability to listen and use our imagination? I felt that there was a real
gap for a good story that included a child who had fun, had the kind
of problems that in the manner of all good books were sorted out by
bedtime and who coincidently happened to be blind. So if there are
books out there that I have overlooked, please let me know.
‘There are none so blind as those that will not see.’
Sarah Kelly, Somerset
March 2013
BACCHNEWS
Book Review – Oxford Handbook of
Community Paediatrics
Having read ‘the role of the
community paediatrician’ in
the Introduction to Community
Paediatrics chapter, I am
amazed that we do not recruit
more people into our specialty!
Introduction
There is such a diverse and interesting range
of specialist areas to get involved in and this
book gives a great overview of each of these
areas with good references for seeking further
information.
Burchardt2 found that disabled 16-year-olds have very similar
education and employment aspirations to their non-disabled
counterparts. However, their actual employment outcomes are
very different, as by the age of 26 they are four times as likely to be
jobless.2
Throughout the book the message of good history taking and
a thorough examination is reinforced, as is the need for good
communication between all professionals and agencies involved with
children and their carers. In chapters such as neurodevelopmental
disorders, neurology and genetics we are reminded of a wide range
of topics that we may be familiar with in everyday clinical practice
and these are presented in an easy, accessible manner with clinically
relevant information. The text is cross-referenced throughout the
book directing us to other relevant information, occasionally making
it difficult to get to the end of the page as one finds oneself diverted
to all sorts of other interesting topics! There is a detailed chapter on
further information and reading, even giving a website that explains
clinical laboratory tests.
There are also chapters such as public health, educational paediatrics
and working with partner agencies which I found very useful as I
incorporate so much of these subjects in my everyday practice but
have done very little reading around them. Having an overview of
these topics in concise and understandable text is very helpful. I also
felt that for those of us who are on the child protection rota, but
perhaps not very experienced, the chapter on child abuse is a good
overview, especially the information regarding the legal aspects and
national and local safeguarding procedures. It also felt reassuring
to read about areas that I am already getting right in my clinical
practice.
Although the book covers subjects well and, with some experience
under one’s belt, it is possible to find the information one is looking
for, it is perhaps not so good at symptom presentation. An example,
if I was inexperienced and presented with a referral letter for an
18‑month‑old who is not yet walking, it is very difficult to find a
starting point in this book.
I feel that the Oxford Handbook of Community Paediatrics is best
directed towards paediatric trainees, community paediatricians still
learning and our multidisciplinary colleagues. I suspect that it would
be less useful to experienced consultants in their everyday practice,
but they might find it useful when preparing teaching.
There are certain things that will change with time such as the
immunisation schedule which will mean it becomes slightly out of
date. However with a reference to the green book website, this is not
a big problem. Perhaps a mention of the DSMIG under the support
organisations for syndromes (p584) would be good in the next
edition.
The book is very practical, easily portable and costs about £39.99
which I think is worth every penny.
Orla Baird, Southampton
March 2013
Employment Opportunities for Young
People with Life-limiting Conditions
In the current economic climate, employment is hard to find and
maintain, with one in seven young people aged 16–24 unemployed
in 2011.1 A chronic life-limiting condition (LLC) adds additional
barriers, some of which are unrelated to a young person’s capability
for the job.
‘Work is positive for health, for income, for social status and for
relationships’ 3
‘Employment was the most important symbol signalling entrance into
the adult world’ 4
Work is important for many reasons, not only financial. For young
people with LLCs, social isolation can be significant:
‘I mean most people find friends and they don’t even remember where
they met, they’re just friends. If you’ve got a job you meet people and
you become friends. Then you go out after work and maybe you meet
their friends; it’s not a deliberate thing like, ‘I’m going to find some
friends’. The main reason I don’t have friends is that I don’t go out to
work and I don’t go out and meet people, so it just doesn’t happen’ 5
Young people with LLCs face numerous social barriers, e.g.
workplace access and employer attitudes which can be overcome with
appropriate support.6 Research has shown that employer-attitudes
can be quite off putting:
Another young person found that there were barriers before they had
made it as far as an employer:
‘I was looking into getting some work so I made an appointment to see
the Disability Employment Advisor at the job centre, but she wasn’t
much good to be honest. She pretty much said straight away that there
wouldn’t be any work that I’d be able to do. I was hoping for a bit
more of a positive approach than that! I thought it’d be the other way
round – that they would be telling me it is possible when I think it’s
not. It wasn’t even a case of looking, she just didn’t even try.’ 5
‘One of them, I couldn’t believe they actually did this … turned
up and went, ‘Oh you’re disabled!’ They said that like at the start.
They said, ‘you didn’t put that on the form’. It was just an absolute
nightmare… You need somebody to find places that would be
interested in taking wheelchairs, and things that you can do. They
didn’t really keep in touch much at all, so I just stopped going in.’ 5
Why look at this topic?
•• Growing cohort of individuals – there has been a 30% increase of
children and young people with LLCs in England over the last 10
years: the biggest increase is in those aged 16–19yrs.7
•• Unemployment – one in seven young people were unemployed
in 2011.1 Disability decreases the likelihood of employment.2 A
LLC is likely to decrease this further.
•• Vulnerable group – young people with LLCs face numerous
challenges in life – medical, social, and financial. Employment is
a rite of passage to adulthood, brings many personal and societal
benefits and should be an option for everyone, however long their
life is likely to be.
Continues overleaf 19
BACCHNEWS
This project aimed to investigate the quality of services designed to
help these young people find employment. We asked:
•• What services are there?
•• How can a young person find them?
•• Who can access the services?
•• What do they offer?
•• What is the quality of service and information?
Who is eligible to use these services?
This is different for each service adding another layer of complexity
to the job search for these young people.
Table 2: Eligibility of Services
Service
To have access to this service you must be:
Scope
Disabled, regardless of whether they are receiving
a benefit allowance or not.8
Over 16 with a disability (as defined by the
Equality Act 2010).12
Disabled according to the Equality Act 2010.13
Shaw Trust
Disabled according to the Equality Act 2010.14
Vision 21
Anybody with a learning disability.13
The Jobcentreplus in Wales’ capital city, Cardiff, was contacted for
more potential services.
Quest
Disabled.16
EmployAbility
University graduates.9
A list of questions was devised to ask each identified service.
BBC Extend
Disabled and appropriately experienced and/or
qualified.10
The research comprised:
•• Internet search: since most young people would start with this,
our search began on the Internet. A list of potential services was
produced from a number of Google searches including:
•• ‘Employment for the Disabled’
•• ‘Employment + life limiting conditions’
•• ‘Work + life limiting conditions’
DEAs at the
Jobcentreplus
Remploy
Results – What services are there?
Eight services purporting to support employment opportunities for
this group of young people were identified:
What happens when a young person starts to
explore job opportunities?
The main point that all the services made was that the young person
has to want to work. If so, the Jobcentreplus is the first place to visit.
DEAs will assess the individual, and then:
•• Search for a job if the individual is ready
•• Help the individual overcome specific barriers and then search for
a job
•• Refer to another organisation8
Access to work scheme
How are these services accessed?
One central point of contact, the Jobcentreplus provided a gateway
to all other services. Here, Disability Employment Advisors (DEAs)
provide a service to young people like those in our study. Individuals
can request an appointment with their local DEA independently
or via a Social Worker.8 DEAs then refer individuals on to any of
the other organisations. The other services can be contacted directly
through information on their websites: but this relies on two
things - firstly that the website can be found and secondly that the
information is accurate and up-to-date regarding contact details etc.
Unlike some of the other services EmployAbility and BBC Extend
also advertise through Universities.9,10 Table 1 summarises the routes
of access:
Table 1: Access to Services 8, 9, 10, 11, 12, 13, 14, 15, 16
Service
Primary access via:
Secondary access via:
DEAs at the
Jobcentreplus
Remploy
Independent access by
the young person
DEA
Social workers
Internet search
Scope
DEA
Internet search
Shaw Trust
DEA
Internet search
Vision 21
Word of mouth/ schools DEA
and colleges
Quest
NHS and support
DEA
workers
EmployAbility University
Internet search
BBC Extend
20
University
Internet search
Jobcentreplus delivers a government run scheme called ‘Access to
Work’, to financially assist disabled individuals in employment. This
may include transport to and from the workplace and provision of
specialised equipment and facilities.8, 11 Funding is shared with the
employer up to a maximum of 80% for equipment required.
Work choice scheme
Works with an unemployed individual for six months to overcome
any barriers to employment. If employment is found during these
six months, the service provides a further two years of support in the
workplace. If no work is found during the six months, the individual
returns to the Jobcentreplus. These timeframes may be difficult
for young people with LLC to meet, since they are likely to have
more complex employment issues than others. This programme is
subcontracted out to different organisations throughout the UK. In
Wales Scope, Shaw Trust and Remploy Choice currently run it.13
Remploy
Remploy run businesses across Wales which directly employ
individuals with disabilities. However in 2012 it was decided they are
not financially viable, and many are earmarked for closure.18
Vision 21
A Cardiff based charity providing work experience for individuals
with learning disabilities. Several employment schemes are run,
including the ‘A la Carte’ café at a local Hospital, which is entirely
staffed by young people with learning difficulties under the
supervision of a manager. Although this scheme does not provide
paid employment, it provides an opportunity for the young people to
develop valuable workplace skills and social skills.15
How the services work with each other
Understanding the relationship between all the different providers is
not easy. Findings are summarised in figure 1 overleaf:
March 2013
BACCHNEWS
sometimes completely out of date. A leaflet collected from the
Jobcentreplus on 9/5/2012 included information on ‘Workstep and
Work Preparation’, a project that terminated in 11/2010.
Speed of Response
This was highly variable as can be seen in Table 3. Jobcentreplus took
five weeks and some persistence to respond at all. This is a long time
as was not a one off, as there is currently a 4-6 week waiting time to
see a DEA.8 This is a problem because the DEA, as we have seen, is
often the gatekeeper for other services.
Success rates of programmes
We were very surprised to find that despite the current culture of
transparency and outcome measures, success rates were very difficult
to obtain. BBC Extend had a high rate of success but also had the
most stringent selection procedure. These are summarised in Table 4
Summary
Quality of services
To assess the quality of the services, a number of factors were
assessed. These are summarised in Table 3.
Finding services
The Internet is the main method of information collection for these
young people and interestingly, a number of the services (Vision 21,
Quest and BBC Extend) were not found unless specifically searched
for; thus a young person would have to know of the services existence
and its specific name in order to find it at all.
Information
Once services had been identified further information was sought.
This was not always easy to get, and when it was obtained was
Table 3: Availability of Information
•• Website quality – the Internet is the main source of information
for these young people. Information was sometimes poor, was not
all up to date or easy to understand and websites were generally
unappealing to this age group. Services were not all found
through a simple Google search.
•• Disability Employment Advisors – appear to act as gatekeepers to
the whole system. Positive attitudes towards these young people
are fundamental to any chance of success in this process.
•• Timeliness of responses – the 4-6 week waiting time to see a
DEA, who is often required before the rest of the process can
begin, is unhelpful for this group of young people whose search
and practical requirements significantly lengthen the usual
process anyway.
•• Complicated relationships – there appears to be no need for the
system to be so complicated.
Services
How easy to find on a Google search How quickly did they reply to my questions?
(1=best)
How available are they?
DEAs at the
Jobcentreplus
1
3.5 weeks
4-6 weeks waiting list to see a DEA
Remploy
Scope
2
4
1 hour
1 day and arranged a meeting
N/A
<5 days
Unless specific help is required during the interview, e.g. an interpreter
Shaw Trust
Vision 21
3
Not found unless searched for
specifically
3+ weeks
3 days
N/A
Very variable, depending on the individual project
Quest
Not found unless searched for
specifically
N/A
N/A
EmployAbility
BBC Extend
5
Not found unless searched for
specifically
1 day
1 day
N/A
N/A
Table 4: Success Rates 8, 9,10,12,13 14,15,16,18,19
Services
Total number applying for
program
Total number on program
Total number finding
employment
% referrals who get onto
program
% obtaining paid employment
DEAs at the
Jobcentreplus
N/A
N/A
N/A
N/A
N/A
Remploy
Scope
Work choice
In whole of UK:
17,190 referrals for 16,010 12,520 starts for 12,230
individuals
individuals
In Wales:
3730
3290
3,550 job outcomes for 72.8%
3,510 individuals
76.4%
28.4%
28.7%
Shaw Trust
Vision 21
540
88.2%
16.4%
N/A
Currently 243 students
filling 456 places
N/A
N/A
N/A
Quest
EmployAbility
BBC Extend
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
65% obtained further paid employment at the
end of the 6 month placement
March 2013
Continues overleaf 21
BACCHNEWS
•• Everybody should be aware of who offers what and for whom.
•• Limited places on each program – the number of places on the
programs needs to grow to accommodate this growing cohort of
individuals.
•• Limitations – very few success rates were available, making it
impossible to quantitatively compare services.
BACCHINFORMATICS
quality of life and allow them to join in, in a world where joining in
is frequently a challenge.
Sarah John, Medical Student
Victoria Lidstone, Consultant in Palliative Medicine and Clinical lead for
Transition in Palliative Care for Wales, Cardiff
Future Work
•• The availability of information needs to be improved so the
young people know what is out there.
•• All services should be accessible on a simple internet search.
•• Information should be clear, up to date, relevant and easy to
navigate.
•• The complexity of the services should be reduced.
•• There needs to be clarity of what each service offers and for
whom.
•• The young people themselves should be involved in the
development and the day to day running of the programs/
schemes.
•• The employment services should look to actively employ the
young people themselves, as Scope do, to benefit both the
businesses and the young people themselves.
•• The availability of work placements for young people with
disabilities needs to increase significantly to allow them to have
a taste of employment, to get an understanding of what type of
work might be possible and appealing, and to experience the
social benefits that it would give them.
So how can you help your patients?
If you have young patients with significant healthcare needs that
would like to work, start the process early. Consult with careers
services in schools and encourage visits to Jobcentreplus. Be aware
of services out there and what they can offer. Young people will need
support throughout the process, signposting is not enough. Many
employment services and employers will have concerns over taking
on a young person in this group and some young people will require
your help with reassuring employers and/or negotiating necessary
clinical support; your personal liaison with employment services is
likely to increase the chances of actually making a work placement
or employment a reality. This is turn will improve your patients
References
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http://www.ons.gov.uk/ons/rel/lmac/characteristics-of-young-unemployed-people/2012/rptcharacteristics-of-young-unemployed-people.html#tab-Youth-unemployment-highest-since-the1980sBurchardt T. 2005. The education and employment of disabled young people. Frustrated
Ambition. The Policy Press. Available at: http://www.jrf.org.uk/sites/files/jrf/1861348363.pdf
Sayce, L. 2011. Getting in, staying in and getting on: Disability employment support fit for
the future. Department for Work and Pensions: Crown. Available at: http://www.dwp.gov.uk/
docs/sayce-report.pdf
Kuh D, Lawrence C, Tripp J, Creber G. 1988. Work and Work Alternatives for Disabled
Young People. Disability, Handicap and Society, 3:1, 3-26.
Abbott D and Carpenter J. 2010. Becoming an adult. Transition for young men with
Duchenne Muscular Dystrophy. Muscular Dystrophy Campaign.
Berthound, R. 2011. Trends in the Employment of Disabled People in Britain. Institute for
Social and Economic Research. No. 2011-03
Marie Curie and Together for Short Lives. 2012. Don’t let me down: Ensuring a good
transition for young people with palliative care needs. Available at:
http://www.mariecurie.org.uk/Documents/press-and-media/News-Comment/Dont-Let-MeDown.pdf Accessed on 23/02/13
Personal Communication – Disability Employment Advisor At the Jobcentreplus in Cardiff
Personal communication – EmployAbility employee
BBC Careers. Available at: http://www.bbc.co.uk/careers/trainee-schemes/about-the-schemeextend Accessed on 20/06/2012
Directgov. Employment Support. Available at: http://www.direct.gov.uk/en/DisabledPeople/
Employmentsupport/index.htm Accessed on 20/06/2012
Remploy. Available at: http://www.remploy.co.uk/employment-services/jobseekers.ashx
Accessed on 20/06/2012
Personal Communication – Scope Operation Manager – Employment
Personal Communication – Case Manager at Shaw Trust
Personal communication – Vision 21 Employee
Quest Employment Agency. Innovate Trust. Available at: http://www.innovate-trust.org.uk/
projects/quest/ Accessed on 25/06/12
Equality Act 2010. Available at: http://www.legislation.gov.uk/ukpga/2010/15/section/6
Accessed on 09/11/12
Personal Communication - Communications Executive, Corporate Communications at
Remploy.
Gifford G. 2012. Work Choice: Official Statistics. Disability Analysis Division. Available at:
http://statistics.dwp.gov.uk/asd/workingage/wchoice/wc_may12.pdf
Accessed on 20/06/2012
(Footnotes)
1 A person (P) has a disability if:
a) P has a physical or mental impairment, and
b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out
normal day-to-day activities.17
BACCHINFORMATICS
Ten years on, Cinderella gets invited…to the High Table
Unbelievably it is now ten years since
the BACCH Convener of the day,
David Vickers, asked me to write an
article on the much-maligned subject
of (shhh, don’t mention that awful
word!) ‘information’ (or rather, the lack
of it and the need for good quality
data) and then a regular column for
BACCH News…1
Sir Ian Kennedy, in the Bristol report, had referred to children’s
services as being a ‘Cinderella’. I am sure I was not alone in thinking
that community based children’s services, under renewed threat by
hostile young PCTs (sic transit gloria mundi! They will be gone in
April 2013), outside the remit of the new system of payment by
results/reference costs, with no information about either their costs
or their activity, were indeed the Cinderella of Cinderellas…
A changing landscape
The most important informatics landmarks of the last decade are,
in my view (apologies to colleagues in devolved nations as these are
mostly English):
22
1. Every child has had an NHS number assigned at birth since
October 2002. This seems rather obvious but was a novel
idea when, I enquired about it at a 1995 NHS information
management group conference.
2. BACCH (2004) and, later, the RCPCH, set up informatics
groups. David Low chairs the RCPCH Informatics for Quality
committee. The BACCH group works almost exclusively by
email (noblesse oblige); it now counts over 40 members, who
actually answer messages, send back questionnaires and are a
wonderfully supportive set! Thank you to all who joined and
please hang on in there! The work is not yet over!2
3. After a sustained campaign by the BACCH informatics group,
Community Paediatrics work was officially included (2006)
under the reference costs/payment by results system; a new
specialty code for statutory work with partner agencies in
education and social care was created in addition to existing codes
for general paediatrics and paediatric neurodisability; the PBR
guidance was updated to include children with learning disability
and behavioural/mental health problems such as ADHD and
ASD within the scope of the paediatric neurodisability code.
Costs were now known and could be compared between
providers.
March 2013
BACCHINFORMATICS
4. Child health mapping took place, along CAMHS mapping, from
2004 to 2010. This provided a vital opportunity for BACCH
members on the steering and working groups to drive home
the message that highly specialised paediatric work occurs on a
massive scale outside hospitals but receives no support, at a time
when the push to deliver local care close to home and school was
starting under the impetus of the National Service Framework for
Children and Every Child Matters.
5. The CHIMAT website3 was set up, partly taking over from the
Child Health Mapping work, to allow comparisons between
areas and Ronny Cheung was charged with producing an Atlas
of (unwarranted) Variation4 in Child Health. Again this exercise
brought home to the authorities the woeful lack of useful data
on almost any aspect of child health. The NHS knows how many
children have had liver transplants (as it should). But it does not
even know how many children who have been admitted to hospital
for cardiac surgery have Down syndrome! (or the other way
round!).
6. After a more than a double elephantine gestation of seven+
years, the Child and Maternity Data Set was finally born and
‘mandated’ in 2012. That it was born alive at all is a miracle, and
it is currently rather ‘small for dates’ for secondary care. However,
it can be ‘force fed’ and will provide literally the growing body
upon which we can graft what is needed. From this seminal
work, essential requirements for child health information
systems suppliers (CHIS),5 first set out by the now defunct
CHIC (child health informatics consortium), have been agreed
for universal programmes and looked after children. There is a
(as yet embryonic) module for safeguarding (qv). For example,
all systems will need to flag the fact that a child has a child
protection plan or is ‘looked after’.
7. HES (Hospital Episode Statistics) is the Holy Grail of all
managers as it controls service income. Until 2006, all eyes were
on inpatient data as this is where most of the money is spent and
much time was invested in coders and, much later on, in making
sure there was clinical input into the system. This apparently
eased the process and resulted in ‘clinical engagement’. When
it was outpatients’ turn (since there are as many outpatient
episodes as inpatient ones) the powers that be realized that the
data was, erm, less than ideal. Andy Spencer, on behalf of the
AORMC and the NHS information Centre carried out a survey
(2011). This showed that clinicians wanted to be able to report
on their outpatient activity and would be interested in using a
pre-agreed list of the 50 most common diagnoses for their chosen
speciality.6 ‘Clinical requirements should be considered in all future
developments of national data collection to provide the quality and
scope of data that is required to deliver the information revolution’.
It was agreed in late 2012 that eight major specialties would be
chosen to pilot this revolutionary clinician friendly approach to
information to improve the quality of ‘hospital’ statistics.
8. Meanwhile BACCH had already successfully piloted a minimum
dataset in 2006, using the Derby codes. Interest grew, more
people joined the informatics group and in late 2011 BACCH
published the POPS CC 30, a list of 30 codes that cover 90%
of generic work done in the community; this was presented
as a poster at the RCPCH annual meeting at Glasgow in May
2012 under the title ‘What do community paediatricians do?
The answer in 30 codes’.7 The title may have been tongue-incheek but the evidence was irrefutable and there for all to see:
community paediatricians in five unrelated districts saw children
with significant problems, and there was a large overlap, with
variations mostly on who did or did not deal with ADHD and
ASD. The myth that all we did was routine baby checks and
school entrant medicals, alas still entrenched in some quarters,
was finally blown. Moreover, all that was needed to replicate this
work was the list of codes, pen and paper. Work continued on
expanding the list to 50 codes, which is probably the maximum
number of codes one can comfortably manage using a pen and
paper based system.
March 2013
9. The DH had tried seven times in the last ten years to organize
some form of data collection on disabled children. The last
attempt was disbanded without even an agreed definition of what
is a disabled child; this time however, Gillian Baird, BACD chair,
secured an agreement in summer 2012 from the Children and
Young Peoples Health Outcomes Forum that basic information
not only on diagnoses, but also on severity and patient/ family
experiences would be collected.
10.The move towards a paperless NHS is accelerating with a
requirement that information be entered electronically in live
time, in a readily analysable and transmissible format. The
current plan is to be paperless by 2018. Our GP colleagues, soon
to be our commissioners, just cannot understand our almost
total lack of information on outpatient contacts as they have
been paperless and reporting on their case mix and activity for a
decade at least.
The time has come
Miraculously, I was asked by Andy Spencer in November 2012
if BACCH would like to submit its preferred codes list as an
additional ‘project’ to the eight chosen specialties under the aegis of
the AORMC project; the idea is to select/request an agreed list of
appropriate SNOMED CT codes per speciality, as this will become
the coding currency in a very short time, with a transfer map from
other systems such as ICD10 and Read. Things are moving fast
and RIO 6, deployed in Hounslow, already uses SNOMED CT, as
does Cerner Millennium, in use in the Wirral. Once each specialty
has agreed its codes list and has piloted it, all informatics systems
suppliers will be required to make that list available for clinicians
to code at the point of contact. No more pleading or bargaining
with managers or financiers for the ability to produce vital clinical
information, more than ‘new and follow up’. No longer agonizing
over which codes to choose without proper informatics support.
Cinderella had just got invited to the High Table of
Informatics.
It had taken ten long years.
Despite its restricted scope, it was an offer I could only have dreamt
of. We had just less than two weeks to find someone who could
attend the inaugural meeting and to agree our 50 codes list. The
informatics group voted urgently on a Magic 50 list,8 with almost
unanimous agreement, and Anastasia Bem attended the inaugural
meeting of the AORMC project on behalf of BACCH. Other
paediatric groups are the Paediatric Neurodisability group, (Gaby
Whitlingum, Jane Williams and Karen Horridge) and the General
Paediatrics group (Ronny Cheung, Steve Cronin, Tom Williams and
Sebastian Yeung).
What happens next?
1. HOT OFF THE PRESS: the basic diagnostic list ‘spine’
of key diagnoses: the BACCH TOP 100
As the BACCH group work was already well advanced, the goal was
relaxed/increased (matter of opinion!) from 50 to 100. It is much
easier to cope with 100 codes electronically as they can be tiered e.g.
disorders of muscle – muscular dystrophies – Duchenne. We are
already planning for the paperless future.
Working with John May, the expert coder from the Information
Centre, we now have a preliminary BACCH Top 100 (slightly
under 100 currently) codes list with agreed SNOMED CT
equivalents grouped into pathways; one of the most useful features
of SNOMED CT is that any diagnosis can be coded as suspected
or confirmed. So a code for suspected ASD will translate into ASD
pathway and eureka, the service can easily answer questions about
number of referrals and diagnostic yield. A few codes have been
requested as they do not currently exist in SNOMED CT e.g. early
developmental impairment rather than delay, child with ADHD on
stimulant medication. The BACCH Top 100 is available on request.9
Continues overleaf 23
BACCHINFORMATICS
BACCHTRAINEES
We are confident that it will code 99% of generic community
paediatric activity diagnoses. We recommend this Top 100 list be
at present tried out by services that code electronically in live time,
or services with a proven track of coding. Of course we welcome
comments. Other services may find the Magic 50 list, which will
cover 95% of activity using broader coding groups, or the basic
POPS CC 30 list, easier to use to start with.
There is always a tension between collecting basic information on
all patients seen, e.g. diagnoses, and collecting more information on
more complex patients.
So we need, in addition to the basic diagnostic spine, ‘modules’ that
will allow us to gather additional information on selected groups.
Work has already started on at least three such ‘modules’ that can be
‘bolted on’ to the basic diagnostic list.
2.The PND (paediatric neurodisability) information
module from BACD.
This module will cover mainly severity e.g. GMFCS scores for
cerebral palsy, markers of complexity, secondary disabilities,
technology dependency and the family’s reported experience of care
and barriers to participation. BACCH and BACD will work closely
together to ensure there is no duplication and data gathering is made
as easy as possible. The hope is to have it all, for the initial pilot, on
two sides of A4: diagnoses on one side and additional PND module
data on the other. If you are interested in taking part, let BACD
know!
3. The child protection information module from
CPSIG.
The BACCH TOP 100 list includes basic diagnoses where there is no
doubt that the child has been subjected in the past to some form of
abuse. We have also included, temporarily at least, a ‘vulnerable child’
code. More work needs doing on choosing codes to reflect details
of child protection examinations, e.g. accidental injury or abnormal
anogenital findings and possibly outcomes of such examinations e.g.
court proceedings. This will be discussed at the next CPSIG meeting,
which John May is attending. Watch this space.
We are now just over one month away from the
first National BACCH Trainees Day on the 19th
April at The Royal College of Paediatrics and
Child Health in London.
The theme for the day is
‘Community Child Health- What does the future hold?’
Speakers include Danya Glaser, Doug Simkiss, Simon Lenton and
Fawzia Rahman.
This event is for us, the Community Paediatricians of the future.
It is a chance for us as trainees to meet and network, as well has
having an exciting and interest day of talks by leaders in the field of
Community Child Health.
The event can only be a success if you support it. Details of the event
and the registration forms can be found on the BACCH website.
Please spread the word to all your colleagues.
Hamilton Grantham,
Sarah Panjwani & Jill Yates
[email protected]
Available with your BACCH Membership
See the journal online at:
www.interscience.wiley.com/journal/cch
4. The looked after children module
Corina Teh, responsible for Looked after and Adoption matters on
the RCPCH standing committee on Child Protection, provided
expert clinical input into the CHIS requirements for this module.
The system structure should make it easy to chart a child’s journey
from coming into care up to adoption placement. Do feedback when
the system is released.
Thanks to all your support over the last 10 years, Cinderella has
now got an invitation to the High Table. But will she get to the ball?
That’s up to you as well! Use the coding lists, use the modules when
released and, above all, tell BACCH how things are going when you
do use the tools, so that they can be refined to improve services for
children.
Fawzia Rahman
[email protected]
With special thanks to Cliona Ni Bhrolchain for her essential support
over the last ten years
References
1.
2.
3.
4.
5.
Information problems in child health services BACCH newsletter spring 2003
http://www.chimat.org.uk/
http://www.rightcare.nhs.uk/index.php/atlas/children-and-young-adults/
available from the DH website
BMJ Open 2012;2:e001651 doi:10.1136/bmjopen-2012-00165 improving the
quality of hospital data
6. Arch Dis Child 2012;97:A72 doi:10.1136/archdischild-2012-301885.17 N
Sellathurai, G Siggers, F Rahman, A Bem
7. BACCH magic 50 voting list available from BACCH website
8. BACCH top 100 with SNOMED CT equivalents available on request
24
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
March 2013