Specialist intellectual disability liaison nurses in general hospitals in England: cohort study using a large mortality dataset

Abstract

Objective
Intellectual disability liaison nurses in general hospitals could enhance access to high-quality, adapted healthcare and improve outcomes. We aimed to explore associations between the input of intellectual disability liaison nurses and the quality of care in people with intellectual disability who are admitted to hospital.

Design
Retrospective analysis of a national dataset of mortality reviews.

Setting
General hospitals in England.

Participants
4742 adults with intellectual disability who died in hospital between 2016 and 2021 and whose deaths were reviewed as part of the Learning from Lives and Deaths mortality review programme.

Outcome measures
We used logistic regression to compare the sociodemographic and clinical characteristics of those who did, and did not, receive input from an intellectual disability liaison nurse. We explored associations between liaison nurse input, care processes and overall quality of care.

Results
One-third of people with intellectual disability who died in hospital in England between 2016 and 2021 had input from an intellectual disability liaison nurse. Intellectual disability liaison nurse input was not evenly distributed across England and was more common in those who died of cancer. Having an intellectual disability liaison nurse involved in an individual’s care was associated with increased likelihood of reasonable adjustments being made to care (adjusted OR (aOR) 1.95, 95% CI 1.63 to 2.32) and of best practice being identified (aOR 1.37, 95% CI 1.17 to 1.60) but was not associated with a rating of overall quality of care received (aOR 0.94, 95% CI 0.78 to 1.12).

Conclusions
Intellectual disability liaison nurses see only a minority of people with intellectual disability who are admitted to hospital in England. Increasing the availability of intellectual disability liaison nurses could improve care for this disadvantaged group.

Full text

1
SheehanR, etal. BMJ Open 2024;14:e077124. doi:10.1136/bmjopen-2023-077124
Open access
Specialist intellectual disability liaison
nurses in general hospitals in England:
cohort study using a large
mortality dataset
Rory Sheehan ,1,2 Jonathon Ding,1 Adam White,1 Nicholas Magill,1,3
Umesh Chauhan,4 Karina Marshall- Tate,5,6 André Strydom1,5
To cite: SheehanR, DingJ,
WhiteA, etal. Specialist
intellectual disability liaison
nurses in general hospitals
in England: cohort study
using a large mortality
dataset. BMJ Open
2024;14:e077124. doi:10.1136/
bmjopen-2023-077124
►Prepublication history
and additional supplemental
material for this paper are
available online. To view these
les, please visit the journal
online (https://doi.org/10.1136/
bmjopen-2023-077124).
Received 26 June 2023
Accepted 24 June 2024
For numbered afliations see
end of article.
Correspondence to
Dr Rory Sheehan;
rory. sheehan@ kcl. ac. uk
Original research
© Author(s) (or their
employer(s)) 2024. Re- use
permitted under CC BY- NC. No
commercial re- use. See rights
and permissions. Published by
BMJ.
ABSTRACT
Objective Intellectual disability liaison nurses in general
hospitals could enhance access to high- quality, adapted
healthcare and improve outcomes. We aimed to explore
associations between the input of intellectual disability
liaison nurses and the quality of care in people with
intellectual disability who are admitted to hospital.
Design Retrospective analysis of a national dataset of
mortality reviews.
Setting General hospitals in England.
Participants 4742 adults with intellectual disability
who died in hospital between 2016 and 2021 and whose
deaths were reviewed as part of the Learning from Lives
and Deaths mortality review programme.
Outcome measures We used logistic regression to
compare the sociodemographic and clinical characteristics
of those who did, and did not, receive input from
an intellectual disability liaison nurse. We explored
associations between liaison nurse input, care processes
and overall quality of care.
Results One- third of people with intellectual disability
who died in hospital in England between 2016 and 2021
had input from an intellectual disability liaison nurse.
Intellectual disability liaison nurse input was not evenly
distributed across England and was more common
in those who died of cancer. Having an intellectual
disability liaison nurse involved in an individual’s care
was associated with increased likelihood of reasonable
adjustments being made to care (adjusted OR (aOR) 1.95,
95% CI 1.63 to 2.32) and of best practice being identied
(aOR 1.37, 95% CI 1.17 to 1.60) but was not associated
with a rating of overall quality of care received (aOR 0.94,
95% CI 0.78 to 1.12).
Conclusions Intellectual disability liaison nurses see only
a minority of people with intellectual disability who are
admitted to hospital in England. Increasing the availability
of intellectual disability liaison nurses could improve care
for this disadvantaged group.
BACKGROUND
Intellectual disability, also known as learning
disability in the UK, is a lifelong disorder of
diverse aetiology characterised by signifi-
cantly below- average intellectual functioning
and adaptive behaviour.1 The prevalence of
intellectual disability is approximately 1%,
with more males than females being affected.2
People with intellectual disability have higher
rates of physical illnesses and complex multi-
morbidity than those in the general popu-
lation, including neurological disorders,
sensory impairments, osteoporosis, metabolic
and cardiovascular diseases.3 4 Evidence from
across the globe shows that people with intel-
lectual disability are more likely to die prema-
ture deaths than their counterparts without
intellectual disability, with many of these
being potentially avoidable with the provision
of good quality healthcare.5–8 Improving care
for people with an intellectual disability and
reducing health inequalities experienced by
this group is a priority for governments and
healthcare systems.9
Adults with intellectual disability are more
likely than those without to be admitted to
hospital and their admissions are longer,10 11
yet they frequently report poor experiences
of hospital care.12–14 General hospitals may
be ill equipped to meet the needs of people
with intellectual disability owing to deficits
in staff knowledge and skills,14–16 stigma-
tising attitudes among professionals17 and
institutional discrimination, which together
can lead to worse outcomes and avoidable
deaths.18
STRENGTHS AND LIMITATIONS OF THIS STUDY
⇒This study used a large dataset of detailed reviews
of care that people with intellectual disability re-
ceived across England over a period of 5 years.
⇒The study used data only from those who died in
hospital.
⇒The level and type of input of intellectual disability
liaison nurses were not known in individual cases.
⇒Patient and carer outcome measures were not
recorded.
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2SheehanR, etal. BMJ Open 2024;14:e077124. doi:10.1136/bmjopen-2023-077124
Open access
The introduction of intellectual disability liaison nurses
(also known as learning disability liaison nurses) has been
proposed as one of a range of interventions to improve
care experiences and outcomes in hospitals.19 The remit
of the intellectual disability liaison nurse is wide- ranging
and a tripartite role has been described that includes clin-
ical, educational (training) and strategic (organisational)
elements.20 Despite anecdotal evidence of increasing
numbers of intellectual disability liaison nurse posts in
UK hospitals over the past two decades, no substantive
figures exist about their coverage and there has been rela-
tively little systematic or generalisable evaluation of their
impact on care.21 The aim of this study was to explore the
involvement of intellectual disability liaison nurses in a
large cohort of adults with intellectual disability accessing
in- patient care in general hospitals and the association
of their input with selected care processes and quality of
care.
METHODS
Data source
Data were obtained from Learning from Lives and Deaths
(LeDeR), a national mortality review programme for
people with intellectual disability in England. LeDeR was
established in 2015 with the aim of improving the quality
of healthcare for people with intellectual disability and
reducing premature mortality by undertaking compre-
hensive and independent reviews of the care that
deceased people received and identifying areas of both
good and poor practice that can inform targeted improve-
ment actions at local or national scale. The development
and implementation of the LeDeR programme have been
described in detail elsewhere.22
Anyone with an intellectual disability who dies at the age
of 4 years or older is eligible for a LeDeR review. Deaths
are first notified via a central system; the notifier, who may
be a health or social care professional, or a friend or rela-
tive of the person who has died, provides key information
about the person that enables the LeDeR administrative
team to confirm that the deceased individual falls within
the scope of the programme (ie, had a confirmed intel-
lectual disability, was ≥4 years at time of death, were regis-
tered with a general practitioner in England, and had not
opted out of their information being used). The person’s
demographic information is then shared with local health-
care commissioners in the region where the person lived,
and a trained local reviewer is allocated. The reviewer is
an experienced professional with a health or social care
background who had not been directly involved in the
care of the person who died.
An initial review is completed for each death; this
includes a narrative summary of the person who died,
information about their health and care needs, and the
cause and circumstances of the person’s death, including
healthcare interventions received. Multiple sources of
information are used to complete the review, including
information from discussions with family members
or friends of the person who had died, professionals,
and primary and secondary care medical records. The
reviewer assigns an overall rating to the quality of care
that the person received based on a global review of the
case, as well as highlighting any learning points (deficits)
and areas of good practice that should be shared more
widely. The initial review is submitted to the local LeDeR
lead professional for a quality assurance check (which may
include revision to meet quality standards) before being
uploaded to the national system. At this stage, personally
identifiable data are redacted to remove names, contact
details and places, before being made available to a
defined set of researchers under strict data sharing and
security protocols. The benefits of using existing data in
this population include access to a relatively large cohort
that would not be possible if collecting new data and the
ability to observe changes over time.
Data used in the present analysis were obtained from the
initial reviews of adults (≥18 years) who died in hospital
between 1 July 2016 (the beginning of the national LeDeR
programme) and the end of 2021 (the last date for which
review data were available).
Covariates
We extracted basic sociodemographic data (age at death;
ethnicity; usual living situation; geographic region, as
defined by general practice registration23) and clinical
information (degree of intellectual disability (catego-
rised as mild, moderate, severe and profound); long- term
conditions (including physical and mental health prob-
lems)) from completed initial reviews. The underlying
cause of death was obtained from the Medical Certifi-
cate of Cause of Death,24 a standard form completed by
a registered medical practitioner who was involved in the
person’s care and categorised according to the chapter of
the International Classification of Disease, 10th edition.1
Several questions in the LeDeR review require reviewers
to identify services and professional input provided to the
person within the last 6 months of their life, including
whether an ‘acute intellectual disability liaison nurse’ was
involved. This is differentiated from ‘community intellec-
tual disability nurse’ and ‘other specialist nurse’ involve-
ment. Community intellectual disability nurses in England
are most often based in specialist community teams for
people with intellectual disability and could be expected
to have only a very limited role when someone is admitted
to an acute hospital, for example, providing handover
information about a person’s medical and support needs.
‘Other specialist nurses’, in this context, are likely to
include nurses with additional training enabling them to
extend their scope of practice in a specific field (eg, palli-
ative care nurses, stroke specialist nurses).
We retrieved data on selected care processes and the
overall quality of care rating assigned by reviewers. The
provision of reasonable adjustments to care and whether
best practice was identified was included as a binary
‘yes/no’ variable completed by reviewers; these ques-
tions require reviewer judgement, informed by their
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Open access
Table 1 Demographic and clinical variables of the sample by ID liaison nurse input
Variable
ID liaison
nurse
(n=1615)
No ID liaison
nurse
(n=3127)
Total
(n=4742)
Unadjusted OR
(95% CI) P value
Adjusted OR* (95%
CI) P value
Age at death, years
(median, IQR)
62 (51–71) 62 (51–71) 62 (51–71) 1.00 (1.00 to 1.00) 0.73 1.00 (0.99 to 1.00) 0.44
Sex Male 943 (58%) 1840 (59%) 2783 (59%) 1 1
Female 668 (41%) 1283 (41%) 1951 (41%) 1.02 (0.90 to 1.15) 0.97 1.01 (0.87 to 1.17) 0.95
Other 1 (0%) 2 (0%) 3 (0%) 0.98 (0.09 to 10.77) 1.49 (0.09 to 24.74)
Missing 3 (0%) 2 (0%) 5 (0%)
Ethnicity White 1455 (90%) 2772 (89%) 4227 (89%) 1 1
Mixed 8 (0%) 17 (1%) 25 (1%) 0.90 (0.39 to 2.08) 0.67 0.37 (0.10 to 1.33) 0.32
Asian 62 (4%) 142 (5%) 204 (4%) 0.83 (0.61 to 1.13) 0.91 (0.62 to 1.33)
Black 32 (2%) 56 (2%) 88 (2%) 1.09 (0.70 to 1.69) 1.10 (0.64 to 1.90)
Other 26 (2%) 40 (1%) 66 (1%) 1.24 (0.75 to 2.04) 1.58 (0.83 to 3.04)
Missing 32 (2%) 100 (3%) 132 (3%)
Level of intellectual
disability
Mild 503 (31%) 1001 (32%) 1504 (32%) 1 1
Moderate 489 (30%) 966 (31%) 1455 (31%) 1.01 (0.86 to 1.17) 0.06 0.98 (0.81 to 1.18) 0.29
Severe 432 (27%) 704 (23%) 1136 (24%) 1.22 (1.04 to 1.43) 1.16 (0.95 to 1.43)
Profound 122 (8%) 220 (7%) 342 (7%) 1.10 (0.86 to 1.41) 1.14 (0.84 to 1.55)
Missing 69 (4%) 236 (8%) 305 (6%)
Region of England Midlands 339 (21%) 611 (20%) 950 (20%) 1 1
East of England 241 (15%) 322 (10%) 563 (12%) 1.35 (1.09 to 1.67) <0.001 1.09 (0.84 to 1.42)<0.001
London 212 (13%) 345 (11%) 557 (12%) 1.11 (0.89 to 1.38) 0.97 (0.75 to 1.26)
North East and Yorkshire 239 (15%) 508 (16%) 747 (16%) 0.85 (0.69 to 1.04) 0.74 (0.58 to 0.95)
North West 153 (9%) 604 (19%) 757 (16%) 0.46 (0.37 to 0.57) 0.39 (0.30 to 0.51)
South East 274 (17%) 469 (15%) 743 (16%) 1.05 (0.86 to 1.29) 1.00 (0.78 to 1.27)
South West 157 (10%) 268 (9%) 425 (9%) 1.06 (0.83 to 1.34) 0.91 (0.69 to 1.20)
Marital status Single 1315 (81%) 2416 (77%) 3731 (79%) 1 1
Married/partner 41 (3%) 76 (2%) 117 (2%) 0.99 (0.67 to 1.46) 0.87 1.05 (0.67 to 1.65) 0.89
Divorced/separated 12 (1%) 29 (1%) 41 (1%) 0.76 (0.39 to 1.49) 0.91 (0.42 to 1.95)
Widowed 17 (1%) 34 (1%) 51 (1%) 0.92 (0.51 to 1.65) 1.26 (0.66 to 2.41)
Missing 230 (14%) 572 (18%) 802 (17%)
Continued
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Open access
professional experience and specific training to complete
reviews. The nature of any reasonable adjustments or best
practice is not explicitly linked to these questions and is
likely to be very diverse owing to the heterogeneity of the
group and their health conditions and additional needs.
Overall quality of care was recorded by reviewers on an
ordinal scale between 1 (‘excellent care’) and 6 (‘care fell
far short of expected good practice, and this contributed
to the cause of death’) (online supplemental table 1).
Analysis
Data were summarised using descriptive statistics. We
created a new multimorbidity variable for those with five
or more long- term health conditions. The quality of care
rating was categorised as a binary variable; those receiving
a grade of 5 or 6 were combined into a new category of
‘poor’ (where the care contributed or had the potential
to contribute to, the cause of death) and those with a
grading of 1–4 (inclusive) were judged as ‘acceptable/
good’ care (where the care received did not contribute to
the cause of death).
We used logistic regression to compare the character-
istics of those who received input from an intellectual
disability liaison nurse with those who did not receive
input from an intellectual disability liaison nurse. We
calculated unadjusted and adjusted ORs (aOR; adjusting
for sex, ethnicity, age at death, degree of intellectual
disability, region, marital status, living situation, presence
of multimorbidity and cause of death). We then used
logistic regression (again adjusted for sex, ethnicity, age
at death, degree of intellectual disability, region, marital
status, living situation, presence of multimorbidity and
cause of death), with intellectual disability liaison nurse
input as a predictor variable to test whether their input
was associated with markers of quality of care including
whether a do not attempt cardiopulmonary resuscitation
(DNACPR) order was correctly followed, whether reason-
able adjustments to care were made, if best practice was
identified as part of the review and overall quality of care
rating. We used Wald tests of association and for cate-
gorical predictor variables with more than two levels, we
reported joint tests. Results were considered statistically
significant if p<0.05.
Patient and public involvement
The LeDeR programme includes input from people with
intellectual disability as part of the Staying Alive and Well
co- production group. The group reviews the findings of
the programme, provides a lived experience perspec-
tive and is involved in dissemination activities, including
creating accessible versions of reports.
RESULTS
Descriptive data
The total dataset comprised 4742 reviews of people with
an intellectual disability who died in hospital between
2016 and 2021 (table 1 and online supplemental table S1
Variable
ID liaison
nurse
(n=1615)
No ID liaison
nurse
(n=3127)
Total
(n=4742)
Unadjusted OR
(95% CI) P value
Adjusted OR* (95%
CI) P value
Living situation Own or family 385 (24%) 875 (28%) 1260 (27%) 1 1
Supported living 457 (28%) 819 (26%) 1276 (27%) 1.27 (1.07 to 1.50) <0.01 1.19 (0.95 to 1.48)0.02
Residential home 486 (30%) 830 (27%) 1316 (28%) 1.33 (1.13 to 1.57) 1.25 (1.00 to 1.56)
Nursing home 168 (10%) 370 (12%) 538 (11%) 1.03 (0.83 to 1.28) 0.87 (0.66 to 1.16)
Other 119 (7%) 225 (7%) 344 (7%) 1.20 (0.93 to 1.55) 1.36 (0.99 to 1.88)
Missing 0 (0%) 8 (0%) 8 (0%)
Multimorbidity No 296 (18%) 758 (24%) 1054 (22%) 1 1
Yes 1319 (82%) 2363 (76%) 3682 (78%) 1.43 (1.23 to 1.66) <0.001 1.37 (1.14 to 1.66)<0.01
Missing 0 (0%) 6 (0%) 6 (0%)
Bold text signies variables signicant at p<0.05.
*Adjusted model includes gender, age at death, ethnicity, level of intellectual disability, region of England, marital status, multimorbidity (ve or more long- term conditions), living situation and
cause of death. Cause of death information is included in the full version of this table, published as online supplemental table S1.
ID, intellectual disability.
Table 1 Continued
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Open access
with cause of death data). The median age at death was
62 years (IQR 51–71 years). Of the total, 2783 (59%) were
male and 4227 (89%) were white.
1615 (34.1%) reviews indicated that an intellectual
disability liaison nurse was involved in the person’s care
in the 6 months prior to their death; this proportion
was consistent over the 5 years that data were available
(figure 1). Although there was some variation in those
who died in 2015 and 2016, interpretation of this is limited
by the much smaller numbers of reviews completed in
those years.
Association of sociodemographic and clinical factors with
intellectual disability liaison nurse input
There were statistically significant associations between
region, cause of death and the presence of multimor-
bidity and recorded input from an intellectual disability
liaison nurse (table 1). We did not find statistically signifi-
cant associations between age, sex, ethnicity, level of intel-
lectual disability, and marital status and involvement of a
liaison nurse. People living in the North- East of England
and Yorkshire and those in the North- West of England
were less likely to have received input from an intellectual
disability liaison nurse, using the Midlands region as the
reference category (aOR 0.74, 95% CI 0.58 to 0.95 and
aOR 0.39, 95% CI 0.30 to 0.51, respectively). People who
died of cancer were more likely to have had input from
an intellectual disability liaison nurse, with the infectious
diseases category as the reference (aOR 1.98, 95% CI 1.09
to 3.61). People with multimorbidity, defined as five or
more long- term health conditions, were more likely to
have input from an intellectual disability liaison nurse
(aOR 1.37, 95% CI 1.14 to 1.66). Those who lived in
supported community living or a residential home were
more likely than people living in their own homes to be
seen by an intellectual disability liaison nurse, though
these results fell marginally outside statistical significance.
Association of intellectual disability liaison nurse input with
care processes and quality of care
Involvement of an intellectual disability liaison nurse
was significantly associated with reasonable adjust-
ments being made to care (aOR 1.95, 95% CI 1.63 to
2.32) and best practice being identified by the reviewer
(aOR 1.37, 95% CI 1.17 to 1.60) (table 2 and online
supplemental table S2 with unadjusted ORs). Intellec-
tual disability liaison nurse input was not significantly
associated with grading of overall quality of care (aOR
0.94, 95% CI 0.78 to 1.12).
People who received input from an intellectual disability
liaison nurse were more likely to have a DNACPR order in
place at the time of their death (aOR 1.41, 95% CI 1.18
to 1.69), however, input from a liaison nurse was not asso-
ciated with the likelihood of the DNACPR order being
correctly completed or followed (aOR 0.81, 95% CI 0.55
to 1.17).
DISCUSSION
Summary of key ndings
Specialist intellectual disability liaison nurses have been
recommended to work across general hospital depart-
ments to improve the experience and outcomes of
people with intellectual disability who are admitted to
hospital. Our data show that only a minority of adults
with intellectual disability who died in hospital in
England between 2016 and 2021 received input from an
intellectual disability liaison nurse prior to their death.
This may be due to a person’s intellectual disability not
being recognised or recorded when they are admitted
Figure 1 Intellectual disability liaison nurse input by year of death (n=4742).
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6SheehanR, etal. BMJ Open 2024;14:e077124. doi:10.1136/bmjopen-2023-077124
Open access
to hospital meaning that they are not identified as being
eligible for specialist input.25 Alternatively, it may be that
not all hospitals employ intellectual disability liaison
nurses or, where they do, coverage is limited by resource
constraints or because the post is split across a number
of sites. It is not mandatory for hospitals in England to
employ an intellectual disability liaison nurse service and
no national- level data exist that show the extent of intel-
lectual disability liaison nurse provision in hospitals. A
survey of children’s hospitals in England found that just
over half had a dedicated intellectual disability nurse.26
A recent NHS benchmarking exercise found that 30% of
staff in NHS secondary care services did not have access to
specialist intellectual disability advice, although respon-
dents included those working in community and mental
healthcare settings, as well as those in hospitals.27
The regression analysis showed certain patient- level
characteristics were significantly associated with the like-
lihood of receiving input from an intellectual disability
liaison nurse. After adjusting for other factors, people who
died in the two regions covering the north of England
were significantly less likely to have seen an intellectual
disability liaison nurse prior to their death. This may be
due to difficulties in recruitment or retention of specialist
staff in those areas. Intellectual disability nurses represent
only a small proportion of all nurses in the UK and their
numbers are falling.28
Cancer is the fourth most common cause of death in
people with an intellectual disability29 and those who died
of the condition were most likely to receive input from an
intellectual disability liaison nurse. This might be because
of relatively well- resourced and structured care pathways
for people diagnosed with cancer and their integration
with palliative care services for people with a terminal
diagnosis that has a holistic and multidisciplinary focus. It
is also possible that those with cancer tend to be admitted
to larger hospitals which may be more likely to have intel-
lectual disability liaison nurse input.
People with multiple long- term health conditions were
more likely to receive input from an intellectual disability
liaison nurse. It may be that the input of an intellectual
disability liaison nurse was sought by the responsible care
team in these cases due to the complexity of care being
increased, or it may also be that intellectual disability
Table 2 Association of ID liaison nurse input with care processes and quality of care rating
Reasonable
adjustments to care
Reasonable
adjustments made
(n=3366)
Reasonable
adjustments not made
(n=1355) Missing Total (n=4721)
Adjusted OR*
(95% CI) P value
ID liaison
nurse
No 2052 (61%) 1055 (78%) 20 3107 (66%) 1
Yes 1314 (39%) 300 (22%) 1 1614 (34%) 1.95 (1.63 to
2.32)
<0.001
Best practice
identied
Best practice
identied (n=3047)
Best practice not
identied (n=1660) Missing Total (n=4707)
Adjusted OR*
(95% CI) P value
ID liaison
nurse
No 1902 (62%) 1198 (72%) 27 3100 (66%) 1
Yes 1145 (38%) 462 (28%) 8 1607 (34%) 1.37 (1.17 to
1.60)
<0.001
DNACPR order in
place
DNACPR order in
place (n=3527)
No DNACPR order in
place (n=1193) Missing Total (n=4720)
Adjusted OR*
(95% CI) P value
ID liaison
nurse
No 2242 (64%) 867 (73%) 18 3109 (66%) 1
Yes 1285 (36%) 326 (27%) 4 1611 (34%) 1.41 (1.18 to
1.69)
<0.001
DNACPR order
correctly followed
DNACPR correctly
followed (n=2445)
DNACPR not correctly
followed (n=181) Missing Total (n=2626)
Adjusted OR*
(95% CI) P value
ID liaison
nurse
No 1528 (62%) 104 (57%) 610 1632 (62%) 1
Yes 917 (38%) 77 (43%) 291 994 (38%) 0.81 (0.55 to
1.17)
0.26
Overall care
grading
Overall good quality
of care (n=3709)
Overall poor quality of
care (n=999) Missing Total (n=4708)
Adjusted OR*
(95% CI) P value
ID liaison
nurse
No 2455 (66%) 646 (65%) 26 3101 (66%) 1
Yes 1254 (34%) 353 (35%) 8 1607 (34%) 0.94 (0.78 to
1.12)
0.49
Bold text signies variables signicant at p<0.05.
*Adjusted model includes gender, age at death, ethnicity, level of ID, region of England, marital status, multimorbidity (ve or more long- term
conditions), living situation and cause of death. Unadjusted ORs are published as online supplemental table S2.
DNACPR, do not attempt cardio- pulmonary resuscitation; ID, intellectual disability.
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liaison nurses prioritise these cases where their resource
is limited. Although not statistically significant, we also
observed that people living in supported or residential
care were more likely than those living in their own home
to receive the support of a specialist nurse; this may be
because paid carers advocated for greater input in the
hospital. It might also be due to intellectual disability
not being recognised in people with less significant func-
tional impairments (who live independently), although
there was no observed association between degree of
intellectual disability and liaison nurse input.
DNACPR orders provide guidance to medical staff about
how to respond when someone has a cardiac arrest.30
DNACPR decisions are not legally binding and are not
signed by the patient or a witness (in contrast to Advance
Decisions to Refuse Care) but should be discussed with
the person and their family or carers, where possible.
Previous research has shown considerable variation in
how DNACPR policies are written and enacted for the
general population, with significant scope for improve-
ment.31 32 In addition, there has been renewed focus on
the appropriateness and rigour of the DNACPR process
since the COVID- 19 pandemic, with people with intellec-
tual disability considered at particular risk of poor and
discriminatory practice, including blanket policies to
deny CPR based on a diagnosis of intellectual disability or
specific genetic conditions.33 The finding that the involve-
ment of an intellectual disability liaison nurse was asso-
ciated with an increased likelihood of a DNACPR order
being made perhaps suggests that the nurse can facilitate
necessary end- of- life care discussions, including about
DNACPR and avoiding inappropriate and futile resus-
citation attempts. However, liaison nurse input was not
associated with the quality of DNACPR documentation or
whether the order was correctly followed; this may indi-
cate that the liaison nurse’s influence is limited in a medi-
cally driven process or that they were not closely enough
involved in the direct care of the person to provide advice
and oversight about implementation when a decision has
been made.
Under the UK Equality Act,34 hospitals and other
providers of services have a legal duty to make reason-
able adjustments to ensure that people are not disadvan-
taged by nature of any protected characteristic, including
disability. In the context of intellectual disability, reason-
able adjustments to hospital care may include environ-
mental adaptations on the ward, providing information
in accessible formats, or permitting carers to remain with
a person outside usual visiting hours.35 A core compo-
nent of the intellectual disability liaison nurse’s role is to
ensure person- centred care when someone is admitted to
hospital36; this was clearly evident in the findings which
showed that those with input from a liaison nurse were
almost twice as likely to receive any reasonable adjustments
to care. Similarly, there was more likely to be evidence
of best practice in the person’s care when their case was
reviewed where an intellectual disability liaison nurse was
involved. Best practice here is broadly defined and could
include good practice when dealing with families and
carers, following guidelines, or applying the principles of
the Mental Capacity Act.37 One previous audit of hospital
in- patient care of people with intellectual disability in
England found that there were improvements in markers
of high- quality care (including having appropriate assess-
ments and care plans in place) in those hospitals where
an intellectual disability liaison nurse was employed, but
this study was underpowered and could not directly link
care of individual patients to liaison nurse input.38
In contrast, there was no observed association between
input of an intellectual disability liaison nurse and overall
quality of care rating assigned by the reviewer. This ques-
tion requires the reviewer to consider all aspects of care
that the person received, not limited to healthcare or
care received in hospital and includes a multitude of
factors that an intellectual disability liaison nurse could
not reasonably be expected to have any influence over,
such as quality of support provided in the person’s home
or the appropriateness of community activities. None-
theless, our findings seem to indicate that the input of
an intellectual disability liaison nurse is associated with
tangible benefits for the individual. Qualitative studies
that have included people with intellectual disability and
carers have reported that intellectual disability liaison
nurses are highly valued20 and improve hospital expe-
riences for people with intellectual disability, including
in communication, patient safety, holistic care and the
provision of reasonable adjustments.15 36 39
Strengths and limitations
There is little existing evidence of the impact of intel-
lectual disability liaison nurses on objectively measured
patient- level care outcomes. To our knowledge, the
intellectual disability liaison nurse role has not been
implemented beyond the UK and the Ireland,21 despite
international evidence of poor care provision for this
group.38
We obtained data from a very large national dataset
of in- depth individual reviews of the care that people
with intellectual disability received before their death.
Reviews are completed using a standardised method by
trained reviewers who can access a person’s complete
medical record and who gather data from a range of
sources, including by speaking to informants who knew
the deceased person in either a personal or professional
capacity. The reviews are of deaths that occur across all
regions of England over a period of 5 years and findings
can be considered representative on this basis. There are
very low rates of missing data in each variable and the
data gathered can be trusted as accurate and compre-
hensive. We were able to identify factors associated with
the likelihood of receiving input from an intellectual
disability liaison nurse, potentially highlighting dispari-
ties in access to care. The study adds to the limited empir-
ical evidence of the impact of intellectual disability liaison
nurses on individual outcomes which, given the largely
positive findings, could be used to strengthen existing
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8SheehanR, etal. BMJ Open 2024;14:e077124. doi:10.1136/bmjopen-2023-077124
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recommendations for acute hospitals to provide this
service.
Although reporting deaths to the LeDeR programme is
strongly encouraged, it is not mandatory and there may
be a small number of people who died who are eligible for
a LeDeR review who did not receive one; we do not have
their details and are not able to characterise this group.
The dataset includes only those people who have died,
and therefore we are not able to draw inferences about
the input and impact of intellectual disability liaison
nurses for people who are admitted and later discharged
from the hospital.
This study is a secondary analysis of data that were
collected to improve services but not specifically to
answer our research questions, and our analysis is limited
by the data that are available. Intellectual disability liaison
nurse input was identified using a single yes/no question,
which cannot identify variation in the type or degree of
involvement in individual cases. Liaison nurse models
of working may differ between hospitals and across the
country, but we do not have information available to
define liaison models in use and to associate these with
outcomes. As this is an observational study, we are not
able to determine the direction of associations that were
shown between intellectual disability liaison nurse input
and other variables. We have no clear measure of patient
or carer experience or reported outcomes and how these
may have been influenced by input of an intellectual
disability liaison nurse. Although there are safeguards to
ensure LeDeR reviews are standardised, there may have
been some unmeasured variability in how individual
reviewers classified good practice or rated quality of care.
Further work
A national census of intellectual disability liaison nurse
posts would provide more detailed information about
coverage and access to specialist care and identify where
gaps exist. This would also help to define different modes
of liaison nurse work at organisational and individual
levels which could be evaluated in a prospective study
to determine the optimum model of liaison working.
A health economic evaluation as part of this would
demonstrate the financial implications of the role and
is important where there are competing demands on
the healthcare budget. It will be important that future
work extends the current study by including people who
did not die in hospital; this could be achieved through
sampling those who have been identified as having intel-
lectual disability on their discharge documentation or by
using linked datasets. This could also include people who
attend the hospital as outpatients as well as those who are
admitted. It would also be possible to expand the eval-
uation to new settings, to examine the benefits of intel-
lectual disability liaison nurses in primary care or acute
mental health services.
The perspectives and experiences of people with intel-
lectual disability and family carers should be sought so
that practice advances can take these into account. Such
studies may be conducted as in- depth qualitative evalua-
tions, appropriately adapted to enable the participation
of people with communication needs, and would comple-
ment the potential national- scale work described above.
Conclusion
The addition of intellectual disability liaison nurses to
acute hospitals has been proposed as a means of improving
the effectiveness and safety of care for people with intel-
lectual disability and their hospital experience. Intellec-
tual disability liaison nurses have a broad remit spanning
direct involvement in individual cases, providing support
and training to healthcare staff, taking a strategic role
in interpreting national policy and embedding a posi-
tive organisational culture around intellectual disability
care. The role is not universal in hospitals in England and
there may be regional variations in access to liaison nurse
care. Our work lends support to the value of intellectual
disability liaison nurses in general hospitals but further
research is needed to determine the most clinically effec-
tive and cost- effective models of care and to determine
the impact on patient and family carer experience.
Author afliations
1Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry,
Psychology & Neuroscience, King's College London, London, UK
2Oxleas NHS Foundation Trust, Dartford, UK
3Department of Medical Statistics, London School of Hygiene & Tropical Medicine,
London, UK
4University of Central Lancashire, Preston, UK
5South London and Maudsley NHS Foundation Trust, London, UK
6Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's
College London, London, UK
X Rory Sheehan @dr_rorysheehan and André Strydom @drandrestrydom
Contributors RS, JD, AW, NM, UC, KM- T and AS contributed to study conception,
planning and design. RS, AW, JD and NM extracted and analysed study data. RS, JD,
AW, NM, UC, KM- T and AS interpreted the data. RS was responsible for drafting the
manuscript and for revisions. RS, JD, AW, NM, UC, KM- T and AS reviewed the nal
manuscript and approved the decision to publish. RS acts as guarantor.
Funding The LeDeR programme is funded by NHS England. An academic
collaboration, led by King’s College London, is commissioned to analyse LeDeR
data.
Disclaimer No specic funding was received for this work and the funders had
no role in analysis, review, or approval of the manuscript, or decision to submit the
manuscript for publication.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the
design, or conduct, or reporting, or dissemination plans of this research. Refer to
the Methods section for further details.
Patient consent for publication Not applicable.
Ethics approval The LeDeR programme uses data from human participants who
are deceased. The programme has Section 251 approval from the Health Research
Authority’s Condentiality Advisory Group, on behalf of the Secretary of State, which
permits the processing of identiable data without consent. Specic additional
ethical approval was not needed for this study.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement No data are available.
Supplemental material This content has been supplied by the author(s). It has
not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been
peer- reviewed. Any opinions or recommendations discussed are solely those
of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and
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Open access
responsibility arising from any reliance placed on the content. Where the content
includes any translated material, BMJ does not warrant the accuracy and reliability
of the translations (including but not limited to local regulations, clinical guidelines,
terminology, drug names and drug dosages), and is not responsible for any error
and/or omissions arising from translation and adaptation or otherwise.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which
permits others to distribute, remix, adapt, build upon this work non- commercially,
and license their derivative works on different terms, provided the original work is
properly cited, appropriate credit is given, any changes made indicated, and the use
is non- commercial. See:http://creativecommons.org/licenses/by-nc/4.0/.
ORCID iD
RorySheehan http://orcid.org/0000-0002-4164-9661
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