The unseen child – children who miss healthcare
appointments
Findings from two recent studies
EBPU seminar series- Anna Freud Centre, UCL
Dr Lisa Arai (Independent Researcher) ; Professor
Helen Roberts ; Professor Terence Stephenson,
UCL Institute of Child Health; Dr Sally Stapley
(Teesside University)
Acknowledgements
The study was funded by the Department of Health
Policy Research Programme, grant number 09GP14.
This is an independent report commissioned and
funded by the Department of Health. The views
expressed are not necessarily those of the
Department.
First study: Lisa Arai, Helen Roberts & Sally Stapley;
Second study: Lisa Arai, Terence Stephenson & Helen
Roberts;
Colleagues in CPRU, DH, NCB & ICH library staff
Grazia Mazotti and David Reeves, Tamsin Arai, Lucy
Stephenson
Ethics approval: SOHSC REC, Teesside University, UCL
Research Ethics Committee & Great Ormond Street
Hospital for Children/UCL Institute of Child Health
R&D office.
2
DNA
In this context, not the
genetic material
determining the
makeup of living cells –
but ‘did not attend’ –
patients not attending
(or being brought to)
appointments.
Did not attend (DNA) cost 2008/9 financial year
Rates (%) of new outpatients who failed to attend their
appointment within mental health specialties.
Years ending 31st March 2006 to 2010 (ISD Scotland)
DNA rate by
age group for appointment in 2007/8
http://www.drfosterhealth.co.uk/features/outpatientappointment-no-shows.aspx
DNA rate by social deprivation for
appointments in 2007/8
http://www.drfosterhealth.co.uk/features/outpat
ient-appointment-no-shows.aspx#references
What do we know and why do we
need to know it?
• There are differences in rates
of children who do not attend
in terms of where they live,
their ethnicity, their age, and
who they are seeing in the
health service
• there are likely to be children
whose health and/or well-being
is compromised as a result of
failing to attend
• DNA is seen as incurring high
costs to the NHS
Building bridges: NCB Families group
We discussed this work
with the NCB families
group This is a nonrandom group recruited
from a population of
diverse parents, some of
whom may have have
children who are
chronically ill or have
disabilities.
© Morris Zwi
• They identified
reasons for nonattendance; some
hypothetical, some
experienced;
• In their view, factors
possibly influencing
non-attendance fell
into these areas:
10
NCB family group: What might lead to Do Not
Attends ?
Bullying/rude clinicians The paediatrician said, well
your tonsils are really quite enlarged, we don’t like to
take them out, are you going to do anything about
your weight? He was quite judgmental, but what he
hadn’t looked into was that she a suffers from a
genetic condition which she doesn’t know when
she’s full because the hormone it’s a bit faulty. So I
would say on a clinical level it was very good, but
probably on a personal level not quite so mindful of
the young person.
..One of my children has [disability} And I remember
going to see [specialist} in [place] and he was quite
rude throughout, hardly looked at my little one and
the proceeded to ask me [something which showed
he hadn’t seen the child’s disability] . At the end of
that meeting when he said, yeah … come back to me
in three months, I walked out that meeting and said
to my husband there’s not a cat in hells chance I’m
going back. If he cannot as a paediatric specialist at
that moment in time even look to make basic
observation go back and deal with adults
Choose and book a good idea but not all parents
know about it Choose and Book] helped, so if I can
go to somewhere 20 miles north of me but it’s
available within 3 weeks or I could stay local but wait
12 weeks that gives me that option which you never
had previously
Research needed: It would be interesting to see the
differences in the follow up appointments in
children’s hospitals, as opposed to ordinary hospitals
and if the follow up appointment DNA is higher or
lower.
in a rural, in our area it’s quite a deprived area, there
are quite a few families with difficulties around the
literacy and so they aren’t able to access the services
because they can't read the information and I think
that is a quite significant problem.
Focus on CYP appropriate, but parents also need to
feel valued in consultation
Cost of cancelling appointments on high cost lines
In London, people move around
Parking tales
]
..I’ve been either stuck in traffic or I
haven’t been able to park and I’ve rung
from the car and said, look I am here, we
are attending but I can’t park. And
there’s no leeway there and although I
understand they’ve got an appointment
system, surely if somebody goes in my
place then the pecking order will stay
even if I have to wait a little bit when I get
there, I should still be able to have a slot.
And they’re, well sorry if you can't get
here within the next 30 minutes, and
that’s if you get a good hospital. You
know you could travel across London,
nearly there, ring up and say, look I’m
stuck on the last hurdle kind of thing and
yeah and I think and that will go down as
a DNA. However that person may want
to have attended, but it would still go
down on record as a DNA, so I think
things like need to, could be looked at
better, certainly for figures.
Scoping study: title of first 20 studies meeting our provisional criteria
Author and year
Focus
1.
Calam et al 2002
Maternal emotion and entry into therapy for children with
behaviour problems
2.
Clemente et al 2006
Evaluation of a Waiting List in CAMHS
3.
Cottrell et al 1998
Factors influencing non-attendance at child psychiatry outpatient appointments
4.
El-Badri & McArdle 1998
Attendance at child psychiatry clinics
5.
Garvey et al, 1992
Radiographic screening programme at four months of age
for infants who were clinically normal at neonatal
examination
6.
Gatrad, 1997
Comparison of Asian and English non-attenders at a
hospital outpatient department
7.
Gatrad, 200
A completed audit to reduce hospital outpatients nonattendance rates
8.
Handy, 1993
A child sexual abuse clinic
9.
Jackson, 1997
Does organizational culture affect outpatient DNA rates?
10.
Kernick, 2008
Children and adolescents with headache: what do they
need?
11.
Madden et al 2002
Psychological adjustment in children with end stage renal
disease: the impact of maternal stress and coping
12.
Mathai, 2011
Improving initial attendance to a child and family
psychiatric clinic
13.
Michel, 2009
Follow-up care after childhood cancer: Survivors’
expectations and preferences for care
14.
Phillips. 2009
Self-Concept and the Perception of Facial Appearance in
Children and Adolescents Seeking Orthodontic Treatment
15.
Potter 1993
Out-patient non-attenders
16.
Rawlinson 2000
The primary/secondary care interface in child and
adolescent mental health services: the relevance of burden
17.
Reda et al 2010
Prompts to encourage appointment attendance for people
with serious mental illness (Review)
18.
Reddy 1989
Parents' beliefs about vaccination
19.
Rimmer & Burke 2009
Proximal interphalangeal joint hyperextension injuries
in children
20.
Roe 2010
Child patients: WNB not DNA
Observations on these studies/implications for
inclusion criteria
•
•
•
•
•
•
•
Many studies are focused on issues other than non-attendance routinely report
non-attendance. Since the focus of these items is not primarily on DNAs, should
these be excluded?;
There are a number of studies specifically on DNAs and the Asian population
Should studies that include data on adults AND children be included?
A number of studies are focused on CAMHS/mental health services.
A relative lack of qualitative research, especially reporting the views/experiences
of those who do not attend;
Distinction between non-engagement and DNAs though these are related issues
(the families that don’t keep appointments may also be the kinds of families that
don’t engage with services in the first place);
One way to organise the scoping review to categorise by nature of item (research
study, opinion piece, primary study); population (Asian); service (mental health)
etc and to focus on 3 questions: what does the literature say about DNAs
(prevalence, costs, correlates); why do children not attend appts (surveys,
qualitative research); what can be done to boost attendance? (recommendations).
Scoping review: 4 main areas in our
included studies
Conceptualization/definition of DNAs & allied
terms:
• Debate about use of term ‘DNA’- considered to be
inappropriate by some (Roe 2010);
• Powell & Appleton (2012) advocate : ‘a
reconceptualisation of DNA to ‘Was Not Brought’
(WNB) to encourage HCPs to take a proactive &
child-centred stance in ensuring child well-being &
safety.
15
Scoping review
The correlates of non-attendance/data problems :
– Socio-demographic & socio-cultural factors;
– Practical/logistical factors (e.g. transport, caring for
other children);
– Referral waiting times & recording/administrative
error:
• ‘. . . supposing you’d moved to [place] & your appointment
was in [place], you may not have the money for the fare & if
there’s three of you . . . you & a couple of kids . . . you’ve got
to take with you, you won’t go because you haven’t got the
money.’ [NCB group mother]
16
Scoping review
Initiatives to reduce non-attendance:
– Aimed at parents not children;
• Most involve use of reminders (text messages, letters)
changes in booking systems or other service-level
changes;
• These can be effective:
– McMillan & Jayatunga (2012) (n = 65), DNA rate was
9.23% for patients given stickers, control DNA rate was
18.4%;
– ‘I think people need reminders, people might
completely forget. [NCB group father].
17
Scoping review
Non-attendance & child safeguarding:
• Of 685 missed appointments in an audit of London
paediatric outpatient appointments, one third were
known to Children’s Social Care (CSC) (Watson &
Forshaw 2002);
• Review of 126 child deaths by Confidential Enquiry into
Maternal & Child Health recommended ‘Health
Services, including primary care & Child & Adolescent
Mental Health Services . . . should proactively follow up
children who do not attend appointments’ (Pearson
2008, p. 6).
18
This led us into our second study:
• NHS Trusts are required by
the Care Quality
Commission (CQC, 2009) to
develop non-attendance
safeguarding policies;
• We identified a number of
DNA guidelines during the
scoping review varying in
content/scope and this led
us into our mapping study.
19
Mapping study
Aim:
To map DNA/associated
guidelines in paediatric services,
examine differences in
safeguarding response/advice &
explore experience of guideline
users
20
Mapping study
• To be Included guidelines needed to have:
– A safeguarding focus;
– focused on children/young people or family
disengagement;
– include advice/ information for HCPs/administrators;
– up-to-date in September 2013;
– & in the public domain;
• Data extracted on:
– guidelines’ details, structure & purpose; the safeguarding
response/advice to HCPs; other relevant data;
• Search valid only for period Oct- Dec 2013.
21
Mapping study
Organisation
type
Number of
organisations
with DNA
guidelines
/sample size*
Number of
guidelines
identified
Acute Trusts
16/157
18
CCGs
7/207
7
MHTs
9/50
9
HCTs
1/25
1
Total
33/439
35
• Approx. 8% had guidelines
meeting inclusion criteria
available;
• 41% had a statement on
website indicating they had
DNA policy or used the Local
Safeguarding Children Board
(LSCB) policy;
• Around 50% had neither
guideline or statement:
• This does not mean they do
not have a policy on DNAs as it
could be behind
intranet/otherwise not
available on website.
22
Mapping study
• We excluded very brief DNA/other guidelines leaving
sample of 24 guidelines for analysis;
• Most guidelines are general - only one aimed at
diabetes DNAs & three for Child & Adolescent Mental
Health Services;
• All referred to other documents (legislation, regulatory
review, statutory guidance, clinical guidelines,
research) to contextualise advice;
• Thirteen provided flow diagrams to aid decisionmaking & three included sample letters to parents;
• Guidelines varied in steps to take when an
appointment is missed.
23
Mapping study
• Steps for HCP to take when a child DNAs fell into five
categories:
– Reflection & review: review records check address & contact
details are correct;
– Direct interaction with the family: offer another appointment;
send a letter to the family;
– Indirect interaction with the family: attempt to contact wider
family members &/or neighbours;
– Liaison with internal colleagues: seek advice from safeguarding
leads in own organisation;
– External referral: liaise with/contact other professionals outside
own organisation including GPs; make a referral to CSC; contact
the child’s social worker; contact the police; issue a missing
family alert.
24
Mapping study
• Second stage explored perspectives of those
involved in creation & use of the guidelines;
• All 24 organisations in our sample were
contacted:
– many R&D contacts were no longer in post, or email
addresses or Trusts had changed.
• Snowballing methods were also used;
• Fifty six organisations were contacted between
January & March 2014;
• We interviewed eight people in the course of
seven interviews.
25
Mapping study
• Four over-arching themes:
1. Managing information flows: gathering,
processing & recording;
2. Seeking help & support from others;
3. The child at the heart of the policy: supporting
children & families;
4. Wider risk discourses & events.
26
Mapping study
Managing information flows: gathering, processing
& recording
• Respondents described information gathering &
processing as having number of functions, such
as helping identify a ‘true’ DNA.
– ‘So we would look...is it a true DNA, have we
rearranged the appointment because sometimes that
happens? You rearrange clinics, you send letters out,
they don’t receive them in time’ (Service manager,
safeguarding children role, Acute Trust).
27
Mapping study
• Information also used to demonstrate the
‘correct’ actions had been followed;
• Several respondents expressed anxiety about
whether failure to attend an appointment
represented a risk or not;
• For a child already ‘known’ to CSC, information
might be held by social workers. However, since
most children who miss appointments are not
known to CSC, establishing level of risk was
difficult.
28
Mapping study
Seeking help & support from others:
• All respondents reported being able to seek
help from others & being well supported
within own organisations in managing DNAs;
• When dealing with colleagues outside own
organisation, respondents referred to
challenges different professional practices
presented.
29
Mapping study
The child at the heart of the policy: supporting
children & families:
• While HCPs talked about supporting families,
concerns were primarily with the child & unmet
needs;
• Prospect of a child missing out on healthcare &
possibly suffering was a concern:
– ‘…actually if the child [is]…not getting
healthcare…then that’s neglect whether you're a
lovely [parent] or not a lovely [parent], really your
loveliness doesn’t really come into it’(Safeguarding
paediatrician, Acute Trust).
30
Mapping study
• Wider societal anxieties & preoccupation
with risk:
• Some respondents referred to high profile
deaths & serious case reviews;
• Awareness strongly linked to the first theme –
the imperative to collect & record information
to demonstrate the ‘right’ steps had been
taken.
31
Summing up
• Scoping review:
– limitations = no critical appraisal, quite tightly defined
inclusion criteria, hard to find literature just on 0-10s, but
useful first step;
• Mapping study:
– response bias in favour of Trusts with a commitment to
transparency; small sample of respondents;
• Areas for future research:
– System errors resulting in ‘false’ DNAs;
– Effectiveness of more specialised guidelines;
– Effectiveness of greater distinction between different
categories of ‘unseen’ child (family that refuses all health
services may be very different from one that engages with
practitioners but does so selectively or sporadically).
32
Whilst failure to attend
can be seen an
indicator of a
family's vulnerability,
potentially placing
the child's welfare in
jeopardy. It can also
be an indicator that
a service is difficult
for families to
access.
Message from the
frontline
© Helen Roberts
References
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•
•
•
•
•
•
Arai, L., Stapley, S. & Roberts, H. (2013). ‘Did not attends’ in children 0-10: a
scoping review. Child: Care, Health & Development, first published online: 18
October.
Arai, L., Stephenson, T. & Roberts, H. (forthcoming). The unseen child &
safeguarding: DNA guidelines in English NHS organisations. Archives of Disease in
Childhood.
Care Quality Commission (2009) Safeguarding Children: A Review of Arrangements
in the NHS for Safeguarding Children. Care Quality Commission, London, UK
McMillan, R. & Jayatunga, R. (2012) Reducing non-attendance rates in the general
paediatric clinic. Archives of Disease in Childhood, 97 (Suppl. 1).
Pearson, G. A. (ed.) (2008) Why Children Die: A Pilot Study 2006; England (South
West, North East and West Midlands), Wales and Northern Ireland. CEMACH,
London, UK.
Powell, C. & Appleton, J. V. (2012) Children and young people’s missed health care
appointments: reconceptualising ‘Did Not Attend’ to ‘Was Not Brought’ – a review
of the evidence for practice. Journal of Research in Nursing, 17, 1181–1192
Roe, M. (2010) WNB versus DNA: why children cannot ‘not attend. British Medical
Journal, 13, 1052–1052.
Watson, M. & Forshaw, M. (2002) Child outpatient non-attendance may indicate
welfare concerns. British Medical Journal, 324, 739.
34