A pragmatic mixed-methods review of

changing “case-complexity” of referrals

to an intensive support service
Adam Clifford and Francesca Georgina Kemp

Abstract Adam Clifford and

Purpose – ‘‘Case-complexity’’ is a widely used but under-explored concept across health and social Francesca Georgina Kemp
care. A region’s Intensive Support Teams (ISTs) had been reporting an increase in ‘‘case-complexity’’, are both based at the
but had not tested this hypothesis against data. This study aims to investigate this question through a Department of Intellectual
pragmatic mixed-methods approach as part of a wider service evaluation. and Developmental
Design/methodology/approach – Health of the Nation Outcome Scales for People with Learning Disability Services,
Disabilities (HoNOS-LD) scores were used (n = 1,766) to estimate average ‘‘case-complexity’’ of referrals
Nottinghamshire
over an eight-year sample period. Two focus groups for IST staff (n = 18) explored why ‘‘case-
Healthcare NHS
complexity’’ appears to be increasing. Participant perspectives were subjected to thematic analysis.
Foundation Trust,
Findings – Average HoNOS-LD scores have steadily increased over the sample period, suggestive of
increasing ‘‘case-complexity’’. Focus groups identified three broad themes to potentially explain the Nottingham, UK.
increased complexity: effects of Transforming Care; people’s changing and unchanging support
systems; and issues related to mild and borderline intellectual disability. Many perspectives are
grounded in or supported by evidence.
Research limitations/implications – Implications and limitations of findings are discussed, including
areas for further consideration and research. The well-designed ‘‘short-cut’’ is promoted as a strategy for
busy professionals in need of practice-based evidence but with limited research time and resources.
Originality/value – The findings and discussion will be of value to anyone involved in the design,
commissioning and delivery of mental health and challenging behaviour services to people with
intellectual and developmental disabilities (IDD) under Transforming Care. Study methodology is easily
replicable to build broader picture about ‘‘case-complexity’’ among UK’s IDD population.
Keywords Mental health, Complexity, Intellectual disability, Service evaluation,
Challenging behaviour, Transforming Care
Paper type Research paper

Introduction
Case-complexity is a widely used concept across health and social care (Greenhalgh and
Papoutsi, 2018). It will be particularly familiar to professionals working within the arena of
Transforming Care (DOH, 2012; AVECO, 2016) with its implications for the rights, care and Received 12 October 2019
Revised 9 February 2020
support of people with intellectual and developmental disabilities (IDD). Transforming Care 12 February 2020
represents the UK Government’s response to the Winterbourne View hospital scandal in 2011, 5 March 2020
Accepted 21 April 2020
which highlighted not only the shocking neglect and abuse of vulnerable adults within that
establishment, but concluded that for a small number of people with IDD, the system remains too The researchers would like to
thank: all members of the IST
reliant on hospital care (LGA, ADASS and NHSE, 2015). It therefore marks the latest continuation focus groups Chris Maguire
of the de-institutionalisation programme for people with IDD living in England, towards those with and Nottinghamshire
Healthcare NHS Foundation
the most complex mental health, behavioural and/or forensic needs (Lovell, 2017). Across Trust’s Applied Information
Service Emeritus Professor
England, 3,250 individuals were initially identified as requiring specialist non-hospital placements Penny Standen of the University
closer to home (DOH, 2013). Six years later, it is estimated that 2,185 individuals are currently of Nottingham.

DOI 10.1108/AMHID-10-2019-0030 VOL. 14 NO. 4 2020, pp. 111-124, © Emerald Publishing Limited, ISSN 2044-1282 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 111
 registered as inpatients within acute to longer term “psychiatric” settings (NHS Digital, 2019). It is
generally accepted that these will be the people with the most complex needs.
While there may be a shared understanding as to what is meant by the term “complex” in
day-to-day professional discourse, there is probably less agreement about the nature and
degree of that complexity in individual cases, where all stakeholders approach from their
unique standpoints, contexts and experiences. These difficulties may also extend to how
complexity is understood and discussed at a population level, when referring to the needs
and qualities of a specialist service’s core client group. This was an issue encountered
within the researchers’ countywide National Health Service (NHS) Intensive Support Teams
(ISTs), who aim to provide a short-term mental health and challenging behaviour service to
adults with IDD, with a key objective of maintaining people in their own homes and
communities, and reducing the number and length of hospital admissions for this client
group (Hassiotis et al., 2020). While there was growing consensus that “case-complexity” of
individuals referred to the service has been steadily increasing in recent years, there was
little formal agreement as to how or why this appeared to be the case, and with no local
data to evidence this claim. If “case-complexity” is increasing, then it will be important to
define, investigate and evidence this phenomenon, so that services are able to understand
and respond to the IDD population’s potentially changing needs.

What is meant by “case-complexity”?

Complexity is often spoken about within health-care services, but the underlying logic and
understanding of case-complexity is under-explored in health research (Greenhalgh and
Papoutsi, 2018). Cohn et al. (2013) define complexity as “a dynamic and constantly
emerging set of processes and objects that not only interact with each other, but come to
be defined by those interactions”. The Medical Research Council suggests that features of
a complex case may include the degree of behavioural change, level of organisational
involvement required to implement interventions, level of variability of outcomes and degree
of intervention flexibility required (Craig et al., 2008). Campbell et al. (2000) suggests that
clients who require multiple prescribed interventions by a variety of professionals may be
viewed as a “complex case”. This is common within the researchers’ ISTs.
Complexity may also manifest as a feature of an individual’s “complex system”. When
considering the individuals referred to the ISTs, “complex systems” could be those within an
individual’s more immediate support system (e.g. family, carers, staff teams, friends,
neighbours and communities), up to and including the wider multi-disciplinary team (e.g.
ISTs, community learning disability teams and physical health-care services). It may also
include difficulties or tensions arising within specific teams surrounding a particular case.
Greenhalgh and Papoutsi (2018) suggest that levels of case-complexity may be inferred from
the inter-relational and reciprocally interacting link between an individual’s planned intervention
requirements, and the context or system within which these interventions are implemented. The
IST multidisciplinary team (MDT) identify with these definitions, where case-complexity is often
defined by the match between an individual’s unique biopsychosocial needs, and definable
features of their support system (e.g. shared knowledge and understandings, carer qualities,
physical environment, access to health care and lifestyle opportunities and constraints).
“Case” is never used in this paper as a synonym for “person”, but will always include a
person. “Case” always refers to the individual, their social system and all the professional
considerations and observations that surround their support. The IST is also neutral on the
concept of “complexity”, and does not see it as inherently unwelcome or problematic.

Service evaluation
Service evaluation is an essential component of quality improvement, and when done well
can help identify problems, build knowledge and inform decision-making in the interests of

PAGE 112 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j VOL. 14 NO. 4 2020
all stakeholders (The Health Foundation, 2015). The researchers’ ISTs were in need of a
particularly robust and comprehensive service evaluation, because of piloting an extended
eligibility criteria and MDT to help meet the region’s Transforming Care obligations. This
included lowering the age of service eligibility from 18 to 17.5 years for people newly
referred to IDD services for an acute mental health or behavioural concern; and providing a
short-term challenging behaviour service to adults with autism and no ID who do not have a
mental health diagnosis that would otherwise qualify them for adult mental health services.
The extended MDT included a series of new roles including a clinical nurse (behaviour)
specialist, assistant psychologist, community support workers and additional speech and
language therapy. The extended remit and MDT was phased into practice over
approximately eight months from around April 2017.
To evaluate the pilot, information was required around service-user demographics, referrals/
admissions rates and trends, caseload sizes, health-care outcomes, stopping the over
medication of people with IDD (STOMP) (NHS England, 2018), innovative practices, workforce
issues, stakeholder feedback and “case-complexity” through a range of quantitative and
qualitative methods. This placed a requirement on a small team of busy clinicians with limited
research and evaluation time to investigate each area in a pragmatic and achievable way (Long
et al., 2018), and via methods that placed minimal additional demands on already pressured
and administratively burdened case holders. This pragmatism also needed balancing against
the primary objective of producing valid and meaningful results of relevance to the region’s
Transforming Care population. It is proposed that well-designed “short cuts” (Hooley and
Parker, 2006) offer a useful method for busy clinicians to investigate complex health-care
phenomenon that might otherwise go un-investigated or never progress beyond clinical
assumptions. This paper therefore represents an extension and elaboration of one section of this
service evaluation, focussing on “case-complexity”.

Study aims and objectives

There is a collective view among the region’s IST professionals that the levels of “case-
complexity” of referrals to the service appear to be increasing. This hypothesis was
subjected to a pragmatic mixed-methods review to understand whether and why this
appears so. It should be emphasised that the “why” question was not predicated on a
positive finding of increasing “case-complexity”, given that a negative, neutral or
inconclusive finding would raise a different question as to why professionals are perceiving
a phenomenon that is unsupported by local data. The aim of the research was therefore to:

1. Evaluate the average level of “case-complexity” of people referred to the IST service
over past eight years.

2. Investigate why “case complexity” appears to be increasing in either:

䊏 Context A: supported by local data; and

䊏 Context B: unsupported or contradicted by local data.

Design and methodology

Quantitative component
Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD) was
used as a crude measure of “case-complexity”. HoNOS-LD provides a clinically validated
outcome measure for rating individuals’ physical, social and emotional well-being across 22
individual domains (Roy et al., 2002). Each domain is rated on a severity scale between 0 (no
problems) and 4 (very severe problems) over the four weeks prior to the assessment. Hillier et al.
(2010) identify how these domains can be grouped into seven overarching categories
encompassing behaviour, cognition, communication, mental state, physical disability, activities

VOL. 14 NO. 4 2020 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 113
 of daily living and social functioning. It is proposed that all of these domains will be sensitive to
contingencies within and/or outside of the person, that will be consistent with previously
discussed definitions of “case complexity”. Using HoNOS-LD as a rating of complexity with
inpatient and community populations has precedence in Sandhu and Tomlins (2017) and
Douglass and Hurtado (2013), respectively. Sandhu and Tomlins (2017) propose that scores
can be used to screen for client complexity and risk of hospital admission, and conclude that a
global score of 21 appears to be the threshold for greater need across a range of domains that
could result in hospital admission. HoNOS-LD also has the advantage of offering retrospective
data, as they are completed for all individuals at the initial assessment and discharge stages of
their IST care pathways, and recorded in their electronic health-care records. It should be noted
that HoNOS-payment by results (PBR) (not HoNOS-LD) ratings are used for people without ID
who began to be referred to the service from around January 2018 (<1% of total referrals for
2018), thus excluding this population from the quantitative analysis. From April 2017 to
December 2018, there were only two referrals for people under 18 (<0.5% of all referrals for that
period).
All electronically held HoNOS-LD scores recorded for individuals during their IST episode of
care were requested from the researchers’ NHS organisation’s Health Informatics
Department. The sample period was between 1st January 2011 (the year of the
Winterbourne View scandal and precursor to Transforming Care) and 31st December 2018.
These scores were transferred to a spreadsheet, and manually sorted by the second
researcher for all entry scores as an estimate of “case-complexity” at time of IST referral.
Yearly averages were then calculated for all individuals referred to the IST service within the
sample period, including standard deviations (SDs). Data were also extracted regarding
individuals’ gender and age at time of referral.

Qualitative component
The qualitative component adopted a focus group methodology based largely on Wilkinson
(2008), comprising of an informal but “moderated” group discussion, focussing on a
specific question. This was conducted after the quantitative analysis of yearly HoNOS-LD
trends, as it offered a pragmatic way to gather the views and experiences of a broad range
of IST and associated professionals (n = 18) on the very specific topic of why “case-
complexity” appears to be increasing, supported or not by local data. Table 1 provides a list
of participants’ professional backgrounds.
IST and associated colleagues were invited to two focus groups at different ends of the
county that took place in late summer of 2019. The focus groups were moderated by the
first researcher, and key discussion themes transcribed by both the first researcher and an
administration colleague (Focus Group 1), and first researcher and second researcher
(Focus Group 2). While audio recording would have provided a more accurate record of the
discussion (Wilkinson, 2008, p. 196), and generated more illustrative quotes to strengthen
the results, this was not possible at the time of the focus groups for logistical reasons. Data
quality was instead monitored through two transcribers for each meeting, so that records
could be checked for consistency, and the analysis only concentrate on topics that were
duplicated between the transcripts. The focus groups ran for 40-50 min.
The focus groups opened with a brief introduction to the concept of “case-complexity”, and
a “reveal” of the quantitative findings regarding average HoNOS-LD scores of referrals
since 2011. Participants were then invited to consider these findings (e.g. whether they
supported or challenged the professional consensus that “case complexity” is increasing)
and answer the following single question:
Q1. Why do we think we are experiencing an increase in case-complexity?

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 Table 1 Professional membership of focus groups
Focus group Participants

Focus Group 1 Admin Support (n = 1)

(n = 9) Clinical Nurse Specialist (n = 1)
Community Nursing (n = 2)
Modern Matron (n = 1)
Occupational Therapy (n = 1)
Speech and Language Therapy (n = 1)
Student Nurse (n = 1)
Team Manager (n = 1)
Focus Group 2 Admin Support (n = 1)
(n = 10) Assistant Psychology (n = 1)
Clinical Nurse Specialist (n = 1)
Clinical Psychology (n = 1)
Community Nursing (n = 2)
Community Support Work (n = 2)
Speech and Language Therapy (n = 1)
Team Manager (n = 1)
Total n = 18
Note:  Same professional attended both focus groups

Qualitative analysis
Transcripts were checked for consistency and accuracy, and then subjected to a
thematic analysis (Braun and Clarke, 2006). The two researchers initially conducted their
own analyses, by manually coding and grouping the data into themes. They then compared
their analyses and agreed on three superordinate themes and eight sub-themes for final
analysis and write-up (Table 2). An inevitability of this process was that themes that did not
feature independently across both focus groups, and/or did not connect clearly to a
superordinate theme, were excluded from the final results.

Ethical considerations
The quantitative component used routinely recorded health outcome data that did not
include any client-identifiable information. For the qualitative component, focus group
participants were made aware that their attendance was entirely voluntary, and that they
could contribute as much or as little as they like. Participants were also made aware that
their contributions would be documented, but that no individuals or organisations would be
identifiable. Participants gave their consent by their attendance at the focus groups. This
review has therefore been cleared through the researchers’ NHS organisation’s research
and innovation ethics processes for publication.

Table 2 Focus group themes and subthemes

Superordinate theme Subtheme

“Transforming Care” Pressure to discharge

Thresholds for admission
STOMP agenda
Support systems Family dynamics
“Specialist” service provision
Loss of traditional services
Borderline intellectual disability issues Societal shifts in mental health/ID awareness
“The Flynn Effect”

VOL. 14 NO. 4 2020 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 115
 Results and discussion
Quantitative component
Figure 1 indicates that the number of HoNOS-LD scores available for analysis averaged 221 a
year across the sample period (n = 1,766), ranging from 201 (2011) to 247 (2015). A line of best
fit illustrates that averages have increased by around 2.9 points across the sample period,
ranging from 20.1 (2013) to 23.8 (2018). The SDs of HONOS-LD ratings for each year range
from 9.3 (2016) to 10.8 (2012), with an average SD of 10.16 across the sample period. A
regression analysis of year of HoNOS-LD ratings on HoNOS-LD mean scores explains a
significant amount of variance in HoNOS-LD averages over the sample period (R2 = 0.678, beta
= 0.823, p = 0.012). This indicates that for every extra year there is a 0.823 increase in average
HoNOS-LD scores and that 67.8% of the variation in average HONOS-LD scores can be
explained by year of ratings (Table 3).
Data were also extracted regarding the gender and ages of referrals to the ISTs over the sample
period. This indicates the ratio of males to females has increased by around 9.9% across the
sample period (R2 = 0.65), ranging from 56.7% males (2012) to 70.6% (2018). However, this did
not reach significance (p = 0.051). Average age of referral was lower at the end of the study
period (33.8 years) than the beginning (38.2) but the regression was not significant (R2 = 0.51).
While there has been some variation in the upper age ranges of referrals over the sample period
(67-84 years), the lower-age ranges have remained largely static (bar a single outlier),
explainable by the ISTs’ minimum age criteria. Neither was there a significant (R2 = 0.044)
change in the number of 17.5-18 year olds referred to the service, as this has varied in a non-
linear fashion from 2 (2016) to 10 (2012) over the study period. Therefore, perception of case
complexity is not explained by a growing cohort of under 19s.
The objective finding of this review is therefore that mean HoNOS-LD scores for individuals
referred to the IST service have gradually increased over the eight-year sample period. In
clinical terms, a three-point increase in an individual’s HoNOS-LD rating between two points in
time would indicate a range of possibilities that include a severe deterioration in a single domain,
milder deteriorations across two or more domains or a shifting set of improvements and
deteriorations across multiple domains, but against an overall picture of increasing severity of
biospsychosocial problems. Unfortunately it has not been possible to run a sub-analysis on

Figure 1 Yearly average of total HoNOS-LD scores at IST initial assessment

25
Average Total HoNOS-LD score

24 23.8

23 23
22.7 22.8
22
21.3 21.8
21 21.1
20 20.1

19

18
2011 2012 2013 2014 2015 2016 2017 2018
Year of IST Referral
Average HoNOS-LD scores at Initial Assessment

Average trend line

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 Table 3 Age, gender and average HoNOS-LD scores by year
Age HoNOS-LD
Year n Range Under 19 n Mean (SD) Gender M/F (%) Range Mean (SD)

2011 201 18-84 5 38.2 (14.4) 126/75 (62.7/37.3) 0-48 21.1 (10.2)
2012 217 18-75 10 37.3 (16) 123/94 (56.7/43.3) 1-57 21.3 (10.8)
2013 202 18-78 7 35.8 (14.2) 124/78 (61.4/38.6) 2-65 20.1 (10.3)
2014 240 15-74 8 38.3 (14.8) 147/93 (61.3/38.7) 2-56 22.7 (10.1)
2015 247 18-77 9 37.1 (14.4) 151/96 (61.1/38.9) 4-64 21.8 (9.9)
2016 209 18-70 2 36.7 (14) 135/74 (64.6/35.4) 5-49 23 (9.3)
2017 219 18-67 3 36 (14.7) 148/71 (67.6/32.4) 3-54 22.8 (10.2)
2018 231 18-73 9 33.8 (13.4) 163/68 (70.6/29.4) 3-56 23.8 (10.5)
Note:  Ages rounded up/down by six months

individual domains or categories to investigate whether any areas are experiencing significantly
more change than others, but this is certainly a consideration for future research. Whether, and
to what extent gender, age or other demographics confidently explain this variance, also
remains a question for further research and analysis.
From these findings, it is inferred that an average increase in yearly HoNOS-LD scores
represents a gradual increase in “case-complexity” of referrals to the region’s IST services.
This would support the subjective consensus of IST professionals that the nature of
individuals’ needs and/or social contexts referred to the service appears to be changing.

Qualitative component

Theme 1: Transforming Care. 1a. Pressure to discharge: Participants recognised that

Transforming Care has led to a new cohort of individuals receiving their assessment and
support in the community. These are people who may previously have accessed specialist
inpatient care for an acute mental health or behavioural concern, or received support for more
enduring needs within a longer-term rehabilitation setting. On this theme, participants observed
more bureaucratic and political pressures to discharge some individuals from hospital
environments as quickly as possible to meet the locality’s Transforming Care targets, but that
individuals and/or community placements do not always appear “ready” at the point of transition
(Taylor et al., 2017; Clifford et al., 2018; Chester et al., 2018). Participants were not in a position
to verify whether this phenomenon was real or perceived, although there is evidence to suggest
that people with IDD tend to have significantly shorter lengths of stay within secure settings
relative to people without IDD and similar risk profiles (Chester et al., 2018). This finding lends
support to professional observations that Transforming Care pressures may be hastening the
inpatient stays and discharges of people with IDD.
The ISTs also reflected that being “ready for discharge” from hospital for people with the most
complex mental health, challenging behaviour and/or forensic needs is becoming less to signify
that the person has been “treated” or “rehabilitated” in the traditional sense. Rather it is
increasingly meaning that an individual’s needs are resistant to positive change within an
inpatient setting, but that they cannot live long term in hospital under Transforming Care. This
means that community providers are needing to adapt to supporting individuals who are
presenting with the very risks and vulnerabilities that caused them to be admitted to a specialist
hospital setting in the first place; and often with a much reduced MDT scaffold than had
surrounded their support within an inpatient setting.
1b. Thresholds for admission: Alongside the pressure to discharge, participants reported
difficulties accessing acute inpatient care (e.g. an assessment and treatment unit) at times of
more appropriate need. This may be where the person is experiencing an acute and risky
mental health crisis, but their IDD ensures extra efforts are made under Transforming Care to
ensure they are not admitted to hospital (NHS England, 2018). Participants could identify a

VOL. 14 NO. 4 2020 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 117
 minority of cases where individuals may have experienced a quicker, safer and less-traumatic
episode of care within a specialist inpatient setting than they received in the community. This is
where individuals in crisis may temporarily require more restrictions or “containment” (Douglas,
2007; p33) than community placements could provide to reduce associated risks. This means
community assessments and support often take place alongside much more “uncontained” and
chaotic presentations than might present in settings of greater environmental and relational
security (while acknowledging the potential therapeutic drawbacks of involuntary inpatient care).
Although a primary function of ISTs is to reduce unnecessary and inappropriate hospital
admissions for people with IDD (NHS England, 2017), a reported effect (or “over-steer”) can be
that people with very acute needs remain in the community under very risky circumstances
(Taylor, 2019), supported by struggling or failing family carers or staff teams. It was further
observed that support providers are often morally and/or contractually prevented from
withdrawing their support from these individuals, even when they try to impose deadlines
because of the personal, public and/or organisational risks involved. One participant described
how “[the provider] tries to serve notice because they can’t manage the risks, but then the
deadline comes and goes, and there’s nowhere else for them to go”. It was proposed that this
can result in individuals and supporters feeling “stuck” in impossible situations with one another,
often with limited ability and/or commitment to work through problems.
Participants further observed that modern thresholds for locked rehabilitation and/or secure
placements are dictated more by forensic risk than the severity of a person’s challenging
behaviour needs. This was not framed as a criticism, but could mean that more people with very
high staffing or specialist environmental needs because of the nature and severity of their
challenging behaviours, are becoming much less likely to access longer-term specialist
inpatient care in the absence of a forensic profile. This observation has some support in Chester
et al. (2018), who found that only 7.6% of people with IDD within high- and medium-secure
services are without a criminal conviction. It is not known how this statistic extends to low-secure
services that are generally accessed through the same centrally funded forensic pathways (Dye
et al., 2016). Devapriam et al. (2020) found that 38.1% of admissions to a region’s locked-
rehabilitation service were under a forensic section of the Mental Health Act (2007), and that
52.4% of all admissions were from a secure hospital or offender setting.
1c. STOMP agenda: Participants were well aware that services have, for many decades, over-
relied on high dose polypharmacy in the mental health and behavioural management of people
with IDD (Sheehan et al., 2017; Branford et al., 2019). An observed effect of this over-reliance
was that individuals could be overly sedated and emotionally blunted, often masking the intensity
and/or psychosocial origins of their complex emotional needs and associated behaviours.
Participants have however observed a slow shift in prescribing practices coinciding with the
STOMP agenda to reduce over-prescribing for people with IDD (NHS England, 2018). It was
therefore proposed that as psychotropic medications are prescribed more cautiously, and de-
prescribed more routinely, individuals with more complex needs will be less sedated, more alert
and self-determined, adding to professional perceptions of complexity. This was framed by one
participant that “perhaps more people [with IDD] are being helped to wake up into the world”?
It was also questioned whether drug withdrawal effects are an under-appreciated phenomenon
within the IDD population, where there is an active trend towards reducing and discontinuing
psychiatric medications. In example, a review by Davies and Read (2018) found that 56% of
anti-depressant users experienced withdrawal effects, most of which experienced them at
moderate to severe, and sometimes for many months. Similarly, an international survey of 832
antipsychotic users found that 65.2% experienced withdrawal effects, with more than half
reporting them to be “severe” (Read and Williams, 2019).
Theme 2: Support systems. 2a. Family dynamics: Participants observed that the dynamics
of families supporting individuals with an IDD appear to be changing, with a societal drift
towards a greater range of families supporting people with complex needs. This includes
more people with IDD, and/or from severely disadvantaged and challenging backgrounds

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having children, and receiving support to maintain a caring role in line with their individual
human rights under Article 8 of the Human Rights Act (1998) and best practice guidance
(Baum et al., 2011). With evidence to suggest that “parents with [IDD] are more likely to live
in poverty; be isolated and victimised; and have poor models of parenting, difficult
relationship histories, insufficient social support, and increased psychological distress”
(Baum, 2014), participants questioned whether a result of people with more complex needs
supporting people with complex needs results in a compounding of case-complexity.
Emerson (2007) highlights how low socio-economic position of many people with IDD,
coupled with adverse life events and social hardship is associated with increased
biopsychosocial vulnerability to a range of physical and mental health problems, poor
educational attainment and reduced quality of life. This could suggest a self-reinforcing
relationship between the complexity of people’s social systems and their IDD needs.
2b. “Specialist” service provision: Participants reported a lack of truly specialist community
provision for people with IDD and the most complex needs (Washington et al., 2019). They also
observed a continued reliance on some existing provision that is not necessarily updating and
modernising with changing need. Participants reported that the key qualities they look for in a
“specialist” service under Transforming Care were relational and environmental security (DOH,
2010), “practice leadership” (Deveau and McGill, 2016) and a well-embedded support and
service philosophy (e.g. Positive Behaviour Support). It was found that when placements lack
one or more of these qualities, they will be less able to prevent and manage acute or enduring
crises with service-users – even with external MDT support – which can lead to placements
breaking down with little guarantee of sourcing an alternative quickly that can meet the
individual’s needs. This is where participants have observed individuals spiralling through
multiple struggling placements, with each emergency transition compounding the traumas and
complexities of the last until the right service, with the right planning, becomes an option for
them. This phenomenon has been described in uncannily similar terms within children’s
services, where teenagers in care have described feeling caught in a game of “pass the parcel”
between providers (Children’s Commissioner, 2019, p. 16).
Participants further reflected on the training of staff and leaders within ostensibly “specialist”
community placements. It was observed that many services are still led by people without
professional backgrounds or accredited qualifications, contrary to current guidelines around
effective practice leadership (LGA and NHSE, 2014, pp. 27-28). While Deveau and McGill
(2016) found that professional qualifications were not associated with staff perceptions of quality
practice leadership, participants noted that unqualified staff leading teams marks a stark
difference to the levels of multi-disciplinary leadership that some individuals will have received in
hospital. It was participants’ assumption that shifts within specialist inpatient settings are
routinely led by at least a qualified nurse, with access to more senior and/or qualified colleagues
as necessary. When reflecting on the training needs of the IDD workforce as a whole,
participants reached the view that staff and leaders within third sector community placements
may not be as routinely trained or supported to the same standards as their contemporaries
within inpatient services. This is despite working with a comparable client group. This is likely to
impact on complexity in cases where staff are insufficiently trained or supported to manage
people’s acute risks and vulnerabilities. Many providers also lack any internal MDT
infrastructure, resulting in further longer term reliance on NHS services to scaffold teams, case-
manage transitions, develop care plans and train staff (Clifford et al., 2018).
2c. Loss of traditional services: It was the collective view of participants that austerity and
service restructuring have led to a loss of traditional services such as statutory day centres
and well-being services. It was participants’ view that many of these services provided
individuals with structure, routine, activity and senses of community and belonging; which
are strongly associated with quality of life and well-being (Connell et al., 2012), and
therefore behaviour (Gore et al., 2013). Participants also recalled cases where service-

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 users have had to partly or fully fund aspects of their care and support, perhaps putting
some provision beyond the financial reach of some individuals and families.
Participants further highlighted the funding pressures on local authorities, and the constant
strive for savings (Rojas-Garcia et al., 2019). These pressures were perceived to have
translated into higher social care thresholds for case managing and/or funding individuals’
care and support at the level they require. A hypothesis among the focus groups was that
less people were receiving social care input at the earliest point of need, with some waiting
until their situation has deteriorated, or risks have escalated, before qualifying for the right
service. It was argued that delaying professional input until need reaches an eligible level
will usually correlate with an increase in complexity. Given social care’s potential to improve
access to support and improve mental health outcomes (Castillo et al., 2019), it was
proposed that this delay in accessing services could result in individuals requiring
considerably more statutory input than may have been the case if earlier intervention had
been available. The groups concurred that this problem will not be unique to social care.
Theme 3: borderline intellectual ability issues. 3a. Societal shifts in mental health/ID
awareness: Perhaps unique to these ISTs, participants felt they are working with a much wider
range of psychosocial issues, conditions and diagnostic labels (or “co-morbidities”) than
yesteryear. This may be in part because of the ISTs’ extended remit working with a slightly wider
demographic of individual (e.g. under 18s and people with autism and no ID). This can add to
perceptions of complexity, as professionals are constantly having to develop their knowledge
and expertise (Lovell, 2017), to ensure (with varying success) that people receive the
assessments, formulations and interventions most appropriate to their needs. An example was
the increasing awareness of trauma and attachment issues among people with IDD (Wigham
and Emerson, 2015; Schuengel et al., 2012), which may be vulnerable to being diagnostically
overshadowed by an individuals’ IDD (Moreland et al., 2008; Standen et al., 2017) or obscured
by a psychiatric diagnosis (Johnstone et al., 2018, pp. 27-29). Participants felt that they were
becoming much better at investigating for trauma and attachment issues, which often uncovers
histories that bring much greater complexity to people’s care and support.
On this theme was a professional consensus that the public’s mental health awareness was
growing, perhaps through greater media reporting and campaigning, and the widening of
diagnostic criteria to include more people (Moynihan et al., 2012). With information about mental
health and diagnosable conditions becoming more easily accessible, participants observed that
some individuals and/or carers are doing their own research and reaching their own diagnoses.
Some IST professionals had also known service-users or carers to undertake online “diagnostic
tests”. Participants wondered whether on-going awareness campaigns and online resources
(not all good) has had a normalising and de-stigmatising effect on diagnosis- and help-seeking
behaviour for a mental health or behavioural concern. The suggestion was that there may be a
relatively new and growing cohort of “complex cases” that previously lived unsupported and
undiagnosed, and therefore under the radar of specialist services.
3b. “The Flynn effect”: Participants were noticing a trend of more able individuals with mild or
borderline ID diagnoses being referred to the ISTs. This was independent of the ISTs’ extended
remits working with people with autism and no ID. For instance, participants were able to recall a
minority of individuals with mild ID who possessed a surprising level of professional or
educational attainment for their apparent intellectual ability (e.g. food hygiene certificate, driving
licence and GCSEs). Many have history with adult mental health services prior to entering IDD
services in later adulthood. Some participants questioned whether this is due in part to rising
societal averages of intellectual ability, and the ways that intelligence quotient categories are
standardised against these averages. This is commonly referred to as the “Flynn effect” (Trahan
et al., 2014). While not without its critics (Trahan et al., 2014), if valid, this would result in services’
eligibility criteria capturing people with greater intellectual and social functioning skills within the
mild and borderline ranges of ID than was historically the case.

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Participants also made the case that greater intellectual ability and capacity leads to
increased independence and self-determination, and less statutory interference in people’s
lives. This in turn opens the door to more lifestyle opportunities, which, paradoxically, may
not always enhance people’s lives (e.g. unhealthy relationships, petty crime, overspending
and substance use). It was the groups’ observation that this can lead to a more complex,
and often contradicting, interface between individuals’ rights, best-interests and
professional duties of care, as a wider variety of service-users may now be more able and
capacitous than IDD services had previously supported. In some cases, legal frameworks
afforded by the Mental Capacity Act (2005) or amended Mental Health Act (2007) are not
applicable, and/or are insufficiently restrictive or containing to prevent someone with
complex needs placing themselves or others at risk through their chosen lifestyles. This
means that assessment and support has to be delivered entirely through the medium of
therapeutic engagement, which can sometimes seem beyond professionals’ gift where
individuals are not ready, willing or able to accept the assistance on offer.

Summary
This review has provided HoNOS-LD data to support the hypothesis, and subjective consensus,
that an IST service has experienced a gradual increase in “case-complexity” over an eight-year
sample period. Obtaining and analysing the relevant data was relatively straightforward, and is
recommended for other services who use and record similar outcome data in an electronically
retrievable way. Caution needs to be exercised however in inferring national or even regional
trends from a single IST service’s data, as ISTs meet only a small proportion of their local IDD
population. UK services are also configured differently in terms of their size, membership and
remits, meaning that specialist community health and social care teams will all be working with
slightly different populations (Hassiotis et al., 2020; Slevin et al., 2008). It may also be that rising
average HoNOS-LD scores represent, in part, changing rating habits among professionals,
especially within teams reporting increasing “case-complexity”. Conversely, it may be that staff
teams working under the Transforming Care agenda will become less sensitised to certain
complexities through continued exposure, and therefore infer lower severity of “problem
behaviours” over time. Underlining these conjectures is evidence that HoNOS-LD is a reliable
measure of change across time and all levels of ID, with a high standard of inter-rater reliability
across different raters and professional groups (Roy et al., 2002; Sandhu and Tomlins, 2017).
Unfortunately, it has been beyond the scope of this evaluation to break down average HoNOS-
LD scores into categories (Hillier et al., 2010) to investigate for areas that this population might
share in common regarding their changing biopsychosocial needs. This is certainly an area for
further research. It is proposed that with more specialist services recording and publishing
similar outcome data, it may be possible to build a more comprehensive picture of how “case-
complexity”, and therefore service requirements, are changing for the IDD population.
In addition to the quantitative findings, the chosen methodology has allowed for a breadth of
qualitative insights into how and why “case-complexity” appears to be increasing from the IST
perspective. These include a mix of pure professional opinion and other perspectives that are
grounded in, or align with, evidence or theory from across health and social care. Many of these
perspectives accord with contemporary thinking and developments in IDD, with others
presenting a degree of challenge to the current direction. Themes include a range of
possibilities concerning the implementation and effects of Transforming Care, the changing and
unchanging nature of individuals’ formal and informal support systems, and the paradox of
working with a more able and mental health aware client group. If valid and generalisable to the
wider Transforming Care population, this suggests that there is still much to achieve to ensure
that people with IDD and the most complex mental health, behavioural and/or forensic needs
have access to robust and effective community services. From the point of view of the IST focus
groups, this should prioritise themes of environmental and relational security (DOH, 2010),
effective practice–leadership and specialist MDT scaffolding (LGA and NHSE, 2014, pp. 27-28;

VOL. 14 NO. 4 2020 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 121
 Deveau and McGill, 2016; AVECO, 2016; p15), staff training (LGA and NHSE, 2014, p. 28),
embedded service and support philosophies and robust and deliverable legal frameworks that
protect the rights and/or safety of all stakeholders affected by Transforming Care. McGill et al.
(2013) have captured many of these qualities (and more) under the rubric of the “capable
environment”, in providing an evidence-based quality framework for commissioners and
providers of services for people with IDD and complex needs. It is proposed that, at the very
least, the focus group themes present worthy questions and hypotheses for further exploration
and research.
Finally, this paper describes a pragmatic approach to studying a complicated phenomenon as
part of a wider service evaluation. While there will always be limits to the extent that complexity
can be simplified, it is hoped that the chosen methodology has gone someway to achieving this.
It is intended that the methodology will be of interest to busy professionals of all backgrounds
who are feeling caught between the stools of producing gold standard research to address
difficult questions or doing nothing at all. This is where the well-designed “short cut” will always
fall short of investigating a complicated phenomenon conclusively, but may be able to provide
preliminary data that warrant attention in directing research, and developing and delivering local
services for certain populations. Einstein apparently once said that “Everything should be made
as simple as possible, but not simpler”. It is hoped this paper has met that standard.

References
AVECO (2016), Time for Change: The Challenge Ahead, ACEVO Health, London.
Baum, S. (2014), “Parents with intellectual disabilities”, available at: www.intellectualdisability.info/family/
articles/parents-with-intellectual-disabilities (accessed 25 September 2019).
Baum, S., Gray, G. and Stevens, S. (2011), Good Practice Guidance for Clinical Psychologists When
Assessing Parents with Learning Disabilities, The British Psychological Society, Leicester.
Branford, D., Gerrard, D., Saleem, N., Shaw, C. and Webster, A. (2019), “Stopping over-medication of
people with intellectual disability, autism or both (STOMP) in England part 1: history and background of
STOMP”, Advances in Mental Health and Intellectual Disabilities, Vol. 13 No. 1, pp. 31-40.

Braun, V. and Clarke, V. (2006), “Using thematic analysis in psychology”, Qualitative Research in
Psychology, Vol. 3 No. 2, pp. 77-101.
Campbell, M., Fitzpatrick, R., Haines, A., Kinmonth, A.L., Sandercock, P., Spiegelhalter, D. and Tyrer, P.
(2000), “Framework for design and evaluation of complex interventions to improve health”, British
Medical Journal, Vol. 321, p. 7262.
Castillo, E.G., Ijadi-Maghsoodi, R., Shadravan, S., Moore, E., Mensah, M.O., Docherty, M., Nunez, M.G.
A., Barcelo, N., Goodsmith, N., Halpin, L.E. and Morton, I. (2019), “Community interventions to promote
mental health and social equity”, Current Psychiatry Reports, Vol. 21 No. 5, pp. 1-14.
Chester, V., Völlm, B., Tromans, S., Kapugama, C. and Alexander, R. (2018), “Long-stay patients with
and without intellectual disability in forensic psychiatric settings: comparison of characteristics and
needs”, BJPsych Open, Vol. 4 No. 4, pp. 226-234.
Children’s Commissioner (2019), Pass the Parcel: children Posted around the Care System, Children’s
Commissioner for England, London.
Clifford, A., Standen, P.J. and Jones, J. (2018), “I don’t want to take any risks even if it’s gonna mean this
service-user is gonna be happier: a thematic analysis of community support staff perspectives on delivering
transforming care”, Journal of Applied Research in Intellectual Disabilities, Vol. 31 No. 6, pp. 1209-1218.
Cohn, S., Clinch, M., Bunn, C. and Stronge, P. (2013), “Entangled complexity: why complex interventions
are just not complicated enough”, Journal of Health Services Research & Policy, Vol. 18 No. 1, pp. 40-43.

Connell, J., Brazier, J., O’Cathain, A., Lloyd-Jones, M. and Paisley, S. (2012), “Quality of life of people with
mental health problems: a synthesis of qualitative research”, Health and Quality of Life Outcomes, Vol. 10 No. 1,
pp. 1-16.
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I. and Petticrew, M. (2008), “Developing and
evaluating complex interventions: the new medical research council guidance”, British Medical Journal,
Vol. 337, p. 7676.

PAGE 122 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j VOL. 14 NO. 4 2020
Davies, J. and Read, J. (2018), “A systematic review into the incidence, severity and duration of antidepressant
withdrawal effects: are guidelines evidence-based?”, Addictive Behaviors, Vol. 97, pp. 111-121.
Devapriam, J., Fosker, H., Chester, V., Gangadharan, S., Hiremath, A. and Alexander, R. (2020),
“Characteristics and outcomes of patients with intellectual disability admitted to a specialist inpatient
rehabilitation service”, Journal of Intellectual Disabilities, Vol. 24 No. 1, pp. 21-34.
Deveau, R. and McGill, P. (2016), “Impact of practice leadership management style on staff experience in
services for people with intellectual disability and challenging behaviour: a further examination and partial
replication”, Research in Developmental Disabilities, Vol. 56, pp. 160-164.
DOH (2010), Your Guide to Relational Security: see, Think, Act, Department of Health, London.
DOH (2012), Transforming Care: A National Response to Winterbourne View Hospital, Department of
Health, London.

DOH (2013), Winterbourne View: Transforming Care One Year on, Department of Health, London.
Douglas, H. (2007), Containment and Reciprocity: Integrating Psychoanalytic Theory and Child
Development Research for Work with Children, Routledge, Hove.
Douglass, L. and Hurtado, B. (2013), “Establishing and evaluating an assertive outreach team”, Learning
Disability Practice, Vol. 16 No. 9, pp. 30-34.
Dye, S., Smyth, L. and Pereira, S. (2016), “Locked rehabilitation’: a need for clarification”, BJPsych
Bulletin, Vol. 40 No. 1, pp. 1-4.
Emerson, E. (2007), “Poverty and people with intellectual disabilities”, Mental Retardation and
Developmental Disabilities Research Reviews, Vol. 13 No. 2, pp. 107-113.
Gore, N., McGill, P., Toogood, S., Allen, D., Hughes, J. and Baker, P. (2013), “Definition and scope for
positive behavioural support”, International Journal of Positive Behavioural Support, Vol. 3 No. 2, pp. 4-23.
Greenhalgh, T. and Papoutsi, C. (2018), “Studying complexity in health services research: desperately
seeking an overdue paradigm shift”, BMC Medicine, Vol. 16 No. 1, pp. 95.
Hassiotis, A., Walsh, A., Budgett, J., Harrison, I., Jones, R., Morant, N., Lloyd-Evans, B. (2020), “Intensive
support for adults with intellectual disability and behaviours that challenge: a survey of provision and
service typologies in England”, BJPsych Open, Vol. 6 No. 2, pp. 1-8.

Hillier, B., Wright, L., Strydom, A. and Hassiotis, A. (2010), “Use of the HoNOS–LD in identifying domains
of change”, The Psychiatrist, Vol. 34 No. 8, pp. 322-326.
Hooley, J. and Parker, H. (2006), “Measuring expressed emotion: an evaluation of the shortcuts”, Journal
of Family Psychology, Vol. 20 No. 3, pp. 386-396.

Johnstone, L., Boyle, M., Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. and
Read, J. (2018), The Power Threat Meaning Framework: Towards the Identification of Patterns in
Emotional Distress, Unusual Experiences and Troubled or Troubling Behaviour, as an Alternative to
Functional Psychiatric Diagnosis, British Psychological Society, Leicester.

LGA & NHSE (2014), Ensuring Quality Services, Local Government Association, London.
LGA, ADASS & NHSE (2015), Building the Right Support, LGA, ADASS & NHSE, London.
Long, K., McDermott, F. and Meadows, G. (2018), “Being pragmatic about healthcare complexity: our
experiences applying complexity theory and pragmatism to health services research”, BMC Medicine,
Vol. 16 No. 1, pp. 94-103.
Lovell, A. (2017), “Learning disability nursing in secure settings: working with complexity”, Journal of
Psychiatric and Mental Health Nursing, Vol. 24 No. 1, pp. 1-3.
McGill, P., Bradshaw, J., Smyth, G., Hurman, M. and Roy, A. (2013), Characteristics of the Capable
Environment, University of Kent, Canterbury.
Moreland, J., Hendy, S. and Brown, F. (2008), “The validity of a personality disorder diagnosis for people with
an intellectual disability”, Journal of Applied Research in Intellectual Disabilities, Vol. 21 No. 3, pp. 219-226.
Moynihan, R., Doust, J. and David, H. (2012), “Preventing overdiagnosis: how to stop harming the
healthy”, BMJ, Vol. 344 No. 4, p. 33502.
NHS Digital (2019), “Learning disability services monthly statistics”, available at: https://digital.nhs.uk/data-
and-information/publications/statistical/learning-disability-services-statistics/at-december-2019-
mhsds-october-2019-final (accessed 28 January 2020).

VOL. 14 NO. 4 2020 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 123
 NHS England (2017), “Transforming care”, Model Service Specifications: supporting Implementation of
the Service Model, NHS England, London.

NHS England (2018), “Care and treatment reviews”, available at: www.england.nhs.uk/learning-
disabilities/care/ctr/ (accessed 25 September 2019).
Read, J. and Williams, J. (2019), “Positive and negative effects of anti-psychotic medication: an
international online survey of 832 recipients”, Current Drug Safety, Vol. 14 No. 3, pp. 173-181.
Rojas-Garcia, A., Woodhead, C., Imwensi, E., Hassiotis, A. and Aspinal, F. (2019), “Managing demand
for social care among adults with intellectual disabilities: a systematic scoping review”, Journal of Applied
Research in Intellectual Disability, pp. 1-15.
Roy, A., Matthews, H., Clifford, P., Fowler, V. and Martin, D. (2002), “Health of the nation outcome scale
for people with learning disabilities (HoNOS-LD)”, British Journal of Psychiatry, Vol. 180 No. 1, pp. 61-66.
Sandhu, D. and Tomlins, R. (2017), “Clinical needs and outcomes of adults with intellectual disabilities
accessing an inpatient assessment and treatment service and the implication for development of
community services”, Journal of Intellectual Disabilities, Vol. 21 No. 1, pp. 5-19.
Schuengel, C., de Schipper, J., Sterkenburg, P. and Kef, S. (2012), “Attachment, intellectual disability
and mental health: research, assessment and intervention”, Journal of Applied Research in Intellectual
Disabilities, Vol. 26 No. 1, pp. 34-46.
Sheehan, R., Strydom, A., Morant, N., Elisavet, P. and Hassiotis, A. (2017), “Psychotropic prescribing in
people with intellectual disability and challenging behaviour”, BMJ (Clinical Research ed.), Vol. 358, p. j3896.
Slevin, E., Truesdale-Kennedy, M., McConkey, R., Barr, O. and Taggart, L. (2008), “Community learning
disability teams: developments, composition and good practice: a review of the literature”, Journal of
Intellectual Disabilities, Vol. 12 No. 1, pp. 59-79.
Standen, P.J., Clifford, A. and Jeenkeri, K. (2017), “People with intellectual disabilities accessing
mainstream mental health services: some facts, features and professional considerations”, The Journal of
Mental Health Training, Education and Practice, Vol. 12 No. 4, pp. 215-223.
Taylor, J. (2019), “Delivering the transforming care programme: a case of smoke and mirrors?”, BJPsych
Bulletin, Vol. 43 No. 5, pp. 201-203.

Taylor, J.L., McKinnon, I., Thorpe, I. and Gillmer, B.T. (2017), “The impact of transforming care on the care and
safety of patients with intellectual disabilities and forensic needs”, BJPsych Bulletin, Vol. 41 No. 4, pp. 205-208.
The Health Foundation (2015), Evaluation: what to Consider. Commonly Asked Questions about How to
Approach Evaluation of Quality Improvement in Health Care, The Health Foundation, London.
Trahan, L., Stuebing, K., Fletcher, J. and Hiscock, M. (2014), “The Flynn effect: a meta-analysis”,
Psychological Bulletin, Vol. 140 No. 5, pp. 1332-1360.
Washington, F., Bull, S. and Woodrow, C. (2019), “The transforming care agenda: admissions and
discharges in two English learning disability assessment and treatment units”, Tizard Learning Disability
Review, Vol. 24 No. 1, pp. 24-32.
Wigham, S. and Emerson, E. (2015), “Trauma and life events in adults with intellectual disability”, Current
Developmental Disorders Reports, Vol. 2 No. 2, pp. 93-99.
Wilkinson, S. (2008), “Focus groups”, in Smith, J. (Ed.), Qualitative Psychology: A Practical Guide to
Research Methods, Sage Publications, London.

Corresponding author
Adam Clifford can be contacted at: Adam.clifford@nottshc.nhs.uk

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