Intensive support teams for adults with intellectual disabilities displaying challenging behaviour: the IST-ID mixed-methods study

Article history

The research reported in this issue of the journal was funded by the HSDR programme or one of its preceding programmes as project number 16/01/24. The contractual start date was in September 2017. The final report began editorial review in August 2021 and was accepted for publication in February 2022. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HSDR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Copyright statement

Copyright © 2022 Hassiotis et al. This work was produced by Hassiotis et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

2022 Hassiotis et al.

Challenging behaviour and outcomes in adults with intellectual disabilities

Adults with intellectual disabilities (also known as learning disabilities in the UK) constitute around 1% of the population. 1 Substantial research shows that these adults have higher rates of mental ill-health,2 and many display challenging behaviour such as aggression towards others, property destruction and self-injury. 3–7 A whole-population epidemiological survey found that ≈ 18% of adults with intellectual disabilities living in the community present with new-onset or relapse of serious challenging behaviour. 8

Challenging behaviour may be the precursor to abuse and/or the implementation of restrictive practices by health-care staff looking after adults with intellectual disabilities. 9 The most recent examples of institutional abuse of adults with intellectual disabilities who display challenging behaviour came to light in 2011 at Winterbourne View hospital,10 followed by Whorlton Hall in 2018. 11 In England, the Transforming Care programme12 was published shortly after as a national response to the Winterbourne View scandal to improve the lives of adults with intellectual disabilities who display challenging behaviour by setting transparent monitoring procedures, conducting regular service audits, employing qualified health-care professionals and promoting advocacy. The interim government report published following the scandal emphasised that the quality of lives of adults with intellectual disabilities and their families improved following deinstitutionalisation. 12 However, the Learning Disability Census Report13 indicated minimal change over the years 2013–15 in relation to the number of inpatient admissions in England, length of inpatient stay, out-of-area placements and use of antipsychotic medication to manage challenging behaviour. This confirmed concerns about the pace of progress in the care provided for this population by community intellectual disability services (CIDSs) across the country. Similarly, data from inpatient services for adults with intellectual disabilities and/or autism showed a very gradual decrease in the number of admissions over time between March 2015 (admissions, n = 2895) and September 2020 (admissions, n = 2060). 14

Data collected by the Department of Health and Social Care indicated that 24,000 adults with intellectual disabilities would be at risk of being admitted to assessment and treatment units, which are often hundreds of miles away from their home, because of challenging behaviour. 6,15,16 These studies indicate that younger male adults with intellectual disabilities and history of previous admissions appear to be at an increased risk of re-admission, such that they should be a population of focus for intervention. 17 Previous concerns about the overprescription of medication were confirmed by a recent study that reported increased figures of psychotropic drug prescription by general practitioners (GPs) to adults with intellectual disabilities. 18,19 The ‘Stopping The Over-Medication of People with an intellectual disability, autism or both’ (STOMP) programme20 was launched by NHS England in 2016 to support adults with neurodevelopmental conditions (including intellectual disabilities) remain well and have a good quality of life. A recent study published by Public Health England reported changes that were in the desired direction over a 7-year period (January 2010–December 2017). 21 The study findings revealed that GPs’ prescription of psychotropic medication to adults with intellectual disabilities to manage challenging behaviour appeared to have decreased since the launch of the STOMP programme in June 2016,20 but it was too early to attribute any observations in prescribing trends to the programme. 21

Out-of-area prolonged hospitalisations and overprescription of psychotropic medication to adults with intellectual disabilities remain an excessive financial cost to the NHS, ranging from £96,000 to £222,000 per person annually, because of the need for more intensive support. 3,13,22 Failure to effectively address a display of challenging behaviour before it reaches a crisis point causes significant distress and burden to families and the consequent breakdown of placements. 23,24 Cumulative studies in Canada indicated that adults with intellectual disabilities were more likely to visit the emergency department,25 return to the emergency department within 30 days of discharge,26 have delayed discharge, be in long-term inpatient care and die prematurely. 27

The concept of intensive support teams in the UK

Specialist intensive services for adults with intellectual disabilities who display challenging behaviour appear to have operated internationally since 1985. 28 From as early as 1993, published literature from the UK has advocated for intensive support teams (ISTs) to support the effective management of challenging behaviour within the community and to prevent inpatient admissions. 29–31 In 1993, 65 specialist teams were operating in England and Wales. 32 ISTs were developed as specialist services that were expected to support people with intellectual disabilities who display challenging behaviour in their local communities following deinstitutionalisation. 32 A number of terms are used to describe ISTs, including ‘peripatetic teams’, ‘assertive outreach teams’ and ‘specialist behaviour teams’. 29,33

A recent survey29 identified 46 peripatetic services for people with intellectual disabilities who display challenging behaviour in England (teams, n = 40), Scotland (teams, n = 4), Wales (teams, n = 1) and Northern Ireland (team, n = 1). These teams aim to help carers manage such behaviours by delivering a range of multidisciplinary specialist support and interventions [e.g. positive behaviour support (PBS), positive psychology, behavioural, eclectic and proactive work) that aim to improve independence skills and mental and physical ill health; to reduce other risks; and, more recently, for those who are inpatients, to prompt timely discharge planning. 29 ISTs are seen as having a significant role in recovery and, therefore, as leading to a better quality of life and a reduction in the frequency and severity of further episodes of crisis.

Widespread concerns about the mental health, social and financial outcomes of inadequately supporting adults with intellectual disabilities who display challenging behaviour over the years were highlighted by NHS England in 2015 and 2017. 34,35 In Transforming Care: a National Response to Winterbourne View Hospital,12 ISTs were recommended to provide specialist, proactive and responsive care, aimed at avoiding unnecessary inpatient admissions, supporting adults within the community or reducing inpatient length of stay. In the main, ISTs are community-based, specialist, multidisciplinary (e.g. psychology, nursing, psychiatry) health-care teams that deliver interventions such as PBS or other support 24 hours per day, 7 days per week (24/7), when necessary, as part of their operation. 34,35

The announcement of the national ‘Building the Right Support’34 plan aimed to complement the previous policy initiative of 201212 by developing more community services to reduce the number of inpatient admissions for adults with intellectual disabilities who display challenging behaviour. 34 NHS England funded six services to act as pilot sites and reinvest any savings in enhancing their community services, including ISTs. In 2017, a total of 48 Transforming Care Partnerships were established in different areas of England to improve the quality of care and quality of life of adults with intellectual disabilities; they aimed to adapt their services in a way that would make a real difference to the lives of adults with intellectual disabilities. 35 Since 2015, the establishment of care and treatment reviews (CTRs) contributed to a sharp reduction in the number of unnecessary inpatient admissions. Data from inpatient services for adults with intellectual disabilities and/or autism showed that this resulted in a 30% decrease in the number of admissions between March 2015 (n = 2895) and September 2020 (n = 2060). 14 Similarly, > 70% (403/552) of CTRs for adults with intellectual disabilities and challenging behaviour were not admitted to hospital in 2016–17. 36

The Systemic, Therapeutic, Assessment, Resources, and Treatment (START) programme model was identified as best practice by the National Academy of Sciences Institute of Medicine in the USA. 37 It provides community-based, person-centred crisis intervention 24/7 for adults with intellectual disabilities who display challenging behaviour; this is delivered by a multidisciplinary team that collects outcome measures routinely and develops partnerships with local service providers. 38,39 Non-randomised research studies emphasised that adults with intellectual disabilities who received support from the intensive START clinical team reported less challenging behaviour, and fewer psychiatric emergency department visits and hospitalisations at 12 months. 38,39 Although the data suggest that the START programme has the potential to improve outcomes for adults with intellectual disabilities in crisis, a randomised controlled trial is yet to test if the START programme is effective for adults with intellectual disabilities who also experience a behavioural or mental health issue, especially as such issues often coexist with physical health comorbidities.

Different models of intensive support teams in the NHS

There is currently little evidence regarding the preferred IST model to meet the complex needs and challenging behaviour of adults with intellectual disabilities in the community. Previous research has demonstrated the positive contribution of standalone specialist behaviour support compared with standard treatment for adults with intellectual disabilities to improve the presentation of challenging behaviour over time (e.g. over 3 and 6 months). 40 On the other hand, Inchley-Mort et al. 41 reported that, at 6 and 12 months, the challenging behaviour of adults with intellectual disabilities who received standalone specialist behaviour support improved compared with the behaviour of those who received usual care from professionals based within a CIDS who were trained to deliver behavioural interventions.

Although there may be a rationale for standalone ISTs,40 there is currently no substantial evidence on long-term outcomes. This has led to scepticism about IST provision and concerns that devoting a large number of resources to specialist services will detract from offering good-quality care universally, especially as emerging evidence suggests that alternatives (e.g. embedded teams) may also be effective. 41 Furthermore, adults with intellectual disabilities and their carers may face disruption and discontinuity in care due to frequent changes in service provision and they may be dissatisfied with what they perceive as the less ‘expert’ service provided by CIDSs. 42 A pilot study found that placing IST staff within a CIDS for 6 months increased staff confidence and understanding of working with adults with intellectual disabilities who display challenging behaviour. 43 In addition, the findings of the service redesign pilot project reported that the CIDS team described the support from IST colleagues as beneficial to improving clinical outcomes for adults with intellectual disabilities, enhancing the IST’s visibility and providing clarity on the existing resources to manage challenging behaviour. 43

The national plan aspires to develop better community services for adults with intellectual disabilities who display challenging behaviour (and/or other complex needs) to reflect the diversity of this population. 34 The suggested service redesign focused on presenting adults with intellectual disabilities as living satisfying, valued lives and being treated with dignity and respect. 34 However, it does not distinguish between mental health and challenging behaviour functions, nor does it give any guidance on the duration of engagement with the individual with intellectual disability. This contrasts with the high-fidelity models that have been in operation in adult mental health, specifically home treatment teams, crisis teams and assertive outreach services. As a result, there is confusion about whether ISTs should follow the principles of operation found in mental health crisis resolution and home treatment teams or assertive case treatment teams. Clarification on these points is particularly important as it has direct consequences on how adults with intellectual disabilities who display challenging behaviour can be best supported in the short- and longer-term. Therefore, despite the roll-out of the Transforming Care programme,44 to the best of our knowledge, there has not been a systematic evaluation of ISTs in terms of characterisation, patient outcomes and relationships with other services in the areas in which they operate. Other potential challenges in establishing ISTs are the lack of a mandate to develop such services, the lack of specification of the approach to follow and the multiple configurations of CIDSs across England and other UK countries.

The literature from other populations (e.g. dementia care45) suggests that home treatment teams appear to offer effective management of crises and to reduce the number of admissions. Wheeler et al. 46 reported limited evidence of the clinical impact of crisis teams on hospital admissions in adults with acute mental health problems, but adults with acute mental health problems, carers and health-care professionals emphasised that accessibility, continuity of care, time to talk, practical help and treatment at home were valuable features of good practice by crisis resolution teams in adult mental health. Thus far, there has been limited reporting on stakeholder experiences of ISTs; however, two studies showed that adults with intellectual disabilities, family carers and care home (paid) carers find the involvement of IST staff and the frequency of contact helpful. 42,47

In addition, although the Building the Right Support34 plan was much needed, it was developed to improve care for adults with intellectual disabilities based on multiple-stakeholder consensus (including adults with intellectual disabilities, their families, service providers and clinicians), rather than on evidence-based information and high-quality research. However, NHS commissioners require robust information on the most efficient service model for adults with intellectual disabilities who display challenging behaviour to fund appropriate services. National Institute for Health and Care Excellence (NICE) guideline 11 on challenging behaviour3 reports the state of evidence thus:

It is widely recognised that locally accessible care settings could be beneficial and could reduce costs but there is no strong empirical evidence to support this.

NICE. 3

© NICE 2015. Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities Whose Behaviour Challenges. Available from www.nice.org.uk/guidance/ng11 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication

In short, an inquiry into ISTs’ characteristics and their ability to deliver positive outcomes to foster long-term investment in them is an important and pressing clinical question. In line with NHS England guidance15 for locally and effectively managing adults with intellectual disabilities who display challenging behaviour, this work will provide commissioners and clinicians with the evidence they need to deliver high-quality care to an underserved population. The project maps onto principles 7 (‘I can access specialist health and social care support in the community’) and 8 (‘If I need it, I get support to stay out of trouble’) of the plan outlined in the service model for commissioners of health and social care services in England. 34 This project is also in accordance with The NHS Long Term Plan,48 which aims to ‘improve community-based support so that adults can lead lives of their choosing in homes not hospitals; further reducing our reliance on specialist hospitals’ (Contains public sector information licensed under the Open Government Licence v3.0. URL: www.nationalarchives.gov.uk/doc/open-government-licence/version/3/).

Study aims and objectives

The overall aim of this study was to systematically examine the clinical and cost characteristics of different IST care models in England to ensure that ISTs are appropriately funded and implemented within the NHS.

The study objectives were to:

• describe the geographical distribution and provision of IST services in England

• create a typology of IST service operation in England

• compare the clinical effectiveness of different IST models for service user outcomes, including challenging behaviour, mental health status, risk, satisfaction with care, quality of life and hospital admissions

• estimate the costs of different IST models and investigate cost-effectiveness

• understand how ISTs impact the lives of adults with intellectual disabilities who display challenging behaviour, their families and the local services

• generate evidence to inform and support decision-making on commissioning ISTs for adults with intellectual disabilities who display challenging behaviour.

Our key research questions were:

• What models of IST are currently in operation?

• Which models perform better in achieving positive outcomes for service users?

• What are the costs and cost-effectiveness of the different IST models and how do they compare?

• How does the local service context support or hinder these processes?

• What are service users’ and family carers’ experiences of ISTs and do they differ between models?

• What are the views of multiple stakeholders on the strengths and limitations of ISTs and the processes that support or hinder their functioning?

Study design

A two-phase mixed-methods design was implemented to address these research questions. Figure 1 illustrates the overall design and flow of the study.

FIGURE 1.

Study overview.

Phase 1 was a quantitative study that identified IST services in the 48 Transforming Care Partnerships in England, described their service characteristics and created a typology of different IST models.

Phase 2 was a mixed-methods cohort study that conducted a survey of health-care professionals’ experiences of the referral process to ISTs and investigated the:

• clinical and cost outcomes of the identified IST models at 9 months from baseline

• experiences of multiple stakeholders of ISTs

• service-level outcomes and operational policies of the identified IST models.

Ethics approval

The Health Research Authority reviewed and approved the study and all amendments (substantial and non-substantial). The Research Ethics Committee reference number is 18/LO/0890.

Data management

All aspects of data management of the study complied with the UK’s Data Protection Act 1998,50 good clinical practice and the General Data Protection Regulation. 51 Data from phase 1 were collected electronically using online survey software (Opinio; ObjectPlanet AS, Oslo, Norway) or on paper forms that did not contain identifiable information and were marked with an anonymised participant identification number only. The paper files from this project were stored on secure University College London (UCL) premises in a locked cupboard accessible to members of the UCL research team only. We followed all aspects of data protection as per research governance and social care and NHS policies. Any data stored at UCL was registered for data protection (Z6364106/2018/04/09) and participant records were anonymised. Identifiable data that constitutes the identification key to link consent forms to case report forms and audio-recordings of consent obtained by telephone/video were stored in the UCL secure platform Data Safe Haven.

Patient and public involvement

In the course of preparing the application, a number of consultations were carried out with two adults with intellectual disabilities and five family carers and paid carers of adults with intellectual disabilities who display challenging behaviour to select and discuss the topic of the funding proposal. They were unanimous in their praise for the accessibility and communication that they had with the IST and they stated that it should be a resource for all services for people with intellectual disabilities who are likely to display challenging behaviour. They emphasised the support that the IST provided in the community, at the person’s home and to the caregivers. They also talked about other aspects of the team, such as the teaching and training functions, that had been useful to them.

We were able to speak with two service users who had direct experience of working with the team; they mentioned that the professionals had helped them with ‘managing their anger’ and that they were very fond of them as they ‘visited often and could talk to staff’. All were supportive of the application because they thought that it was important to find out more about the teams and whether or not commissioners may be more interested in funding ISTs ‘if they know more about the benefits’. The feedback received from the adults with intellectual disabilities and the family carers was overwhelmingly positive and ISTs were seen as an important resource for reducing the number of admissions and maintaining these adults in the community.

In addition, a co-applicant gave a presentation on IST at an educational meeting for trainees and consultants in intellectual disability. The psychiatric audience considered issues such as evidence, the wider context of the teams and the need to have robust data on what works best, as they recognised that we need to improve the existing evidence base and value for money for CIDS practice.

Post award, we liaised with two London-based service user groups to decide the involvement of service users in the project. We enlisted interested adults who wished to be members of the Project Advisory Group. We conducted interviews to appoint people with a range of different experiences and carried out a 3-hour training session in research skills and tasks over the duration of the project using easy-read formats based on National Institute for Health and Care Research (NIHR) guidance. 52 The Project Advisory Group had two facilitators in case of illness or leave. We also sought input from family carers through local carer groups in co-applicants’ sites.

The Family Carer Advisory Group included four family carers recruited through the Challenging Behaviour Foundation (Chatham, UK), an independent charity of experts by experience.

The specific tasks of the service user and family carer advisors’ input to the Project Advisory Group were to (1) develop participant information resources and pilot instruments and topic guides; (2) contribute to the interpretation of the findings; (3) have an overview of the study processes, advise on recruitment and contact with potential participants and carers; and (4) report and disseminate the research findings.

Meetings with both expert-by-experience groups took place every 3 months. The Project Advisory Group remained actively engaged in all of the tasks listed above. In particular, their views during the qualitative coding and analysis of transcripts directed the final presentation of study findings. When physical or virtual presence in meetings was challenging, a telephone call was arranged to discuss the study progress and record each member’s comment.

Last, there was service user and family caregiver representation in the Study Steering Committee that oversaw the study. Thus, the interests of all parties and the views of those involved have been fully represented in the conduct of the study.

Introduction

Phase 1 of the study was required to proceed to the model evaluation phase and comprised a national survey that aimed to investigate the operation of ISTs in England.

The key objectives of the survey were to:

• examine the geographical distribution and characteristics of ISTs in England

• develop a typology of IST service models

• describe the IST model profiles and contextual characteristics.

The phase 1 study has been published elsewhere. 53

Methods

A screening questionnaire (see additional files; www.journalslibrary.nihr.ac.uk/programmes/hsdr/160124/#/documentation; accessed 3 March 2022) was initially developed to identify the geographical distribution of ISTs, with reference to national guidance;30 it was sent to all specialist CIDSs in England. CIDSs were identified through multiple routes, including Clinical Commissioning Groups, online searches, previous research and the list of 48 Transforming Care Partnerships. The screening questionnaire included a list of the terms that are used to describe specialist intensive care in England (see Chapter 1).

The responses to the screening questionnaire were reviewed by members of the Project Management Group (PMG) to check whether or not the identified intensive teams fulfilled the IST criteria and should be contacted for the IST-specific survey. Any discrepancies regarding team assignment were resolved by discussion with all PMG members. The criteria were broad: (1) identification of IST function separate from CIDSs, (2) a referral pathway for challenging behaviour and/or (3) staff trained to deliver interventions for challenging behaviour.

The managers of all ISTs identified from the screening survey were invited to take part, and those who agreed to take part were sent a detailed online questionnaire using the Opinio platform (see additional files; www.journalslibrary.nihr.ac.uk/programmes/hsdr/160124/#/documentation; accessed 3 March 2022). The questionnaire was divided into 13 sections, including 62 open- and close-ended questions that covered information about service type and location, caseload and referral numbers, opening hours, response target times, staffing, management and funding, services provided by the IST, service user characteristics, use of outcome measures, interventions and assessments, and the intensity of support, as well as concluding questions. There were free-text questions that addressed the model and philosophy of IST care, suggested changes to the service, challenges faced by the IST and priorities for improving the service.

A number of strategies were adopted to achieve a high completion and return rate, such as having both an online and a hard-copy version of the survey, regular e-mail prompts and the option of completing the questionnaire by telephone. The survey response data were managed using the Opinio software.

Data analysis

The IST characteristics and geographical location of ISTs were summarised using descriptive statistics [i.e. count and percentage for categorical measures or median and interquartile ranges (IQRs) for continuous outcomes which were not normally distributed].

A hierarchical cluster analysis was performed using six grouping variables to develop a typology of ISTs and classify services on prespecified variables into a number of groups, with similar services being placed in the same group. These were:

• setting of service

• team composition

• caseload

• operating hours

• type of referral permitted

• use of outcome measures.

All factors were defined as binary measures for each of these variables. IST staff were grouped into professional categories such as nursing psychology, psychiatry, social work and other. The total number of health-care professionals was calculated for each team. Teams were defined as multiprofessional if they consisted of two or more professional staff categories. The caseload per team member was calculated as the number of service users per full-time equivalent (FTE) member of staff. A large caseload was defined as 2.5 or more clients per FTE staff member (excluding trainees), which is in line with guidance from the UK Department of Health and Social Care about mental health crisis teams. 54

The operating hours of ISTs were defined as extended hours of operation if they offered services outside working hours (09.00–17.00) on weekdays or offered any weekend services. Those ISTs that accepted referrals directly from service users eligible to receive specialist intellectual disability services, or from their family carers and paid carers, were defined as allowing self-referrals to their service. On the other hand, there were ISTs that accepted referrals exclusively from services such as GP services, mental health services or police or third-sector organisations, and not self-referrals. The remaining two grouping factors, setting (e.g. embedded within CIDSs or independent service separate from CIDSs) and whether or not the service used outcome measures, were based on direct responses to the relevant questions in the survey.

The six grouping variables were used to perform a hierarchical cluster analysis employing Ward’s method,55 with squared Euclidean distance as the dissimilarity measure. The accumulation of individual services into larger clusters was illustrated with a dendrogram. The dendrogram was carefully reviewed, taking into consideration the dissimilarity of measures for different clusters, a visual inspection of the dendrogram and a discussion about the clinical validity of the proposed models with the co-applicant experts. All analyses were carried out using Stata/IC, version 14.0 (StataCorp LP, College Station, TX, USA).

The qualitative data from free-text responses were analysed thematically. 56 Data were extracted into a Microsoft Excel^® (Microsoft, Corporation, Redmond, WA, USA) spreadsheet to organise responses to each question into basic topic- and opinion-based themes. Two researchers independently conducted the initial coding and analysis under the supervision of a qualitative expert to ensure clarity and consistency among findings. Preliminary outputs were reviewed by all members of the research team.

Results

Two-hundred and thirty-six out of 242 (98%) CIDSs completed and returned the screening questionnaire to identify ISTs. Of those, 188 CIDSs declared that they referred to 80 ISTs; the managers of these ISTs were sent a web link or hard copy of the detailed survey (Figure 2). In total, 73 (91%) IST managers returned their questionnaires.

FIGURE 2.

Flow diagram of the identification of ISTs during the screening survey with CIDSs. Reproduced with permission from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This figure includes minor additions and formatting changes to the original figure.

Reproduced with permission from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This figure includes minor additions and formatting changes to the original figure.

Service characteristics of all intensive support teams

The main IST service domains are presented below.

Service location and setting

The ISTs was equally distributed geographically throughout Northern England, the Midlands and Eastern England, and Southern England (Figure 3). The majority of the ISTs were funded by the NHS, although the lead organisation may have differed by area, including services that were funded by the local authority. Very few ISTs were part of social enterprises. Social enterprises are private businesses (usually registered as charities) that use their surplus money from selling/trading goods and/or providing services to reinvest in their services. They are autonomous from the NHS and financially viable, although they are considered part of the NHS by the public.

FIGURE 3.

Geographical location map of ISTs. ALD, Adult Learning Disability; AST, Adult Support Team; CHAT, Community Health Assessment Team; CHNS, Complex Health Needs Service; CLDHT, Community Learning Disability Health Team; CLDS, Community Learning Disability Service; CTPLD, Community Team for Adults with Learning Disabilities; CTPLS, Community Team for People with Learning Disabilities; EIS, Early Intervention Service; ELFT, East London Foundation Trust; IATT, Intensive Assessment and Treatment Team; ICATT, Intensive Community Assessment and Treatment Team; ILDS, Intensive Learning Disability Service; IRT, Intensive Response Team; ISS, Intensive Support Service; LD, Learning Disability; LDHT, Learning Disabilities Health Team; LDISS, Learning Disability Intensive Support Service; LDS, Learning Disability Service; NE, North East; PBSS, Positive Behaviour Support Service; PBST, Positive Behaviour Support Team; RDASH, Rotherham Doncaster and South Humber; RIT, Rapid Intervention Team; SLDS, Specialist Learning Disability Service; SSSFT, South Staffordshire and Shropshire Foundation Trust; SST, Specialist Support Team. Map data © 2019 Google (Google Inc., Mountain View, CA, USA). Reproduced from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This figure includes minor additions and formatting changes to the original figure.

Reproduced with permission from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This figure includes minor additions and formatting changes to the original figure. Map data © 2019 Google (Google Inc., Mountain View, CA, USA).

Interventions used

Intensive support teams offer a range of interventions, including PBS, psychoeducation and other psychosocial interventions. A detailed summary of all of the key IST characteristics is shown in Table 1. 53

TABLE 1 - Characteristics of ISTs

Reproduced with permission from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This table includes minor additions and formatting changes to the original table.

Characteristic	ISTs (N = 73), n (%)
Location and setting
Region
Northern England	19 (26)
Midlands and Eastern England	22 (30)
Southern England	23 (32)
London	9 (12)
Setting
Mainly funded by NHS (Clinical Commissioning Groups)	67 (92)
Mixed funding, including from local authority	20 (27)
In social enterprise	3 (4)
Standalone service	25 (34)
Length of time in operation (months), median (IQR)	48 (24–96)
Service users
Size of current caseload, median (IQR)	25 (15–50)
Number of service users on at-risk register, median (IQR)	6 (2–15)
Average visit duration
30–60 minutes	25 (35)
60–120 minutes	43 (60)
> 120 minutes	4 (6)
Extended working hours	48 (66)
IST operates a duty/crisis line	38 (52)
Outcome measures used	55 (75)
Staffing, training and skills
Multiprofessional staff team	65 (89)
Intellectual (learning) disability nurses	62 (85)
Clinical psychologists	57 (78)
Speech and language therapists	38 (52)
Occupational therapists	33 (45)
Psychiatrists	31 (42)
Social workers	59 (81)
Trainee staff (e.g. student nurses, trainee associate practitioners)	38 (52)
One or more team members trained as an approved mental health practitioner	6 (8)
Perceived need for additional training or skills (e.g. additional professional roles or additional skills such as intervention and prevention strategies)	50 (68)
Eligibility and referrals
Lower age limit
IST accepts adults only (people aged ≥ 18 years)	59 (81)
IST accepts young people (aged 14–17 years)	12 (16)
No lower age limit	2 (3)
Upper age limit
None	71 (97)
IST accepts patients in contact with the criminal justice system	65 (89)
IST accepts patients experiencing mental health problems	71 (97)
IST accepts patients with intellectual disabilities and challenging behaviour who are not in crisis but who need support	64 (88)
IST provides early hospital discharge support	72 (99)
IST accepts self-referrals	41 (56)
IST accepts referrals without further assessment from trusted assessors	14 (19)
Target time to respond to referrer (days), median (IQR)	5 (1–14)
Target time to commence assessment (days), median (IQR)	5 (1.5–14)
Target time to complete assessment (days), median (IQR)	7 (3–28)
IST operates a waiting list	7 (10)
Interventions used
PBS	72 (99)
Psychoeducational interventions with service users’ family carers or paid carers	68 (94)
Other evidence-based psychosocial therapies (e.g. anger management, mindfulness, counselling, cognitive behavioural therapy)	68 (94)

Caseload

The ISTs’ median caseload was 25 (range 15–50) adults with intellectual disabilities who display challenging behaviour, whereas the median number of adults considered to be at risk of admission was 6 (range 2–15). The average duration of an IST staff member’s visit to a service user was usually 1–2 hours. In total, 66% of the ISTs reported working extended hours and 52% operated a duty/crisis line.

Staffing, training and skills

A common feature of ISTs was their multidisciplinary nature. A number of health and care professionals worked together in ISTs; the most common type of professional was nursing staff, followed by social workers. More than 65% of IST managers described a perceived need for additional training or skills in their service.

Referrals and eligibility

Most ISTs operated with few or no limitations on accepting referrals for adults with intellectual disabilities relating to challenging behaviours, or for mental ill health either in the acute phase or for ongoing care. Self-referral was accepted by 41 ISTs. The IST managers reported that assessments take place within 5 days and are completed within 7 days. In total, 19% of ISTs accepted referrals for young people aged 14–17 years, ensuring a smooth transition to adult specialist services, with 3% of those ISTs indicating that they had no lower age limit and worked across the lifespan.

Cluster analysis

The cluster analysis included data from 71 ISTs because we were unable to obtain data on FTEs from the IST managers of two teams. A two-cluster typology was preferred over a three-cluster typology on the basis of distance dissimilarity statistics from the cluster analysis and discussion among experts. The three-cluster typology split the independent provision cluster into two clusters of fairly equal size (n = 27 and n = 19, respectively). These two subclusters were differentiated most strongly on whether or not they were a standalone service, whether or not they had a large caseload, and whether or not self-referral was permitted. Information about the factor clustering is shown in the dendrogram (Figure 4), which illustrates the agglomeration of individual services into ever-larger clusters. Horizontal lines at zero indicate clusters of services that are identical in relation to the grouping factors. Horizontal lines nearer the bottom of the dendrogram represent the merging of clusters that are similar to each other. Horizontal lines nearer the top of the dendrogram represent the merging of more heterogeneous clusters, with larger distance values. Long vertical lines indicate that two clusters that are dissimilar to each other are being combined and suggest that the clusters represent distinct types of services.

FIGURE 4.

Dendrogram illustrating cluster agglomeration. Reproduced from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This figure includes minor additions and formatting changes to the original figure.

Reproduced with permission from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This figure includes minor additions and formatting changes to the original figure.

We named the two models the enhanced model and the independent model. Enhanced ISTs were more likely to (1) accept self-referrals, (2) have a large caseload, (3) be integrated with the CIDS function and (4) provide longer-term support than independent ISTs. Enhanced ISTs were less likely to use outcome measures than independent ISTs. A detailed presentation of the characteristics of each IST model is shown in Table 2. Based on the data, there is limited evidence that service models were sufficiently distinguished by whether or not they employ a mix of health and social care professionals (i.e. multidisciplinary teams) or if they operate extended opening hours.

TABLE 2 - Profiles of the two IST models

SD, standard deviation.

Notes

Large caseload: ≥ 2.5 clients per FTE staff member. Extended hours refers to working outside 09.00–17.00.

Reproduced with permission from Hassiotis et al. 53 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. This table includes minor additions and formatting changes to the original table.

Characteristic	Model, n (%)
	Enhanced (N = 25)	Independent (N = 46)
Self-referral permitted	25 (100)	16 (35)
Large caseload	23 (92)	15 (33)
Outcome measures used	13 (52)	41 (89)
Standalone service	3 (12)	21 (46)
Multiprofessional staff team	21 (84)	43 (93)
Extended working hours	16 (64)	31 (67)
Other service characteristics
Working hours
Monday–Friday only, 7–8 hours	9 (36)	15 (33)
Monday–Friday only, ≥ 8 hours	9 (36)	8 (17)
Monday–Friday, ≥ 7 hours, and weekends	5 (20)	13 (28)
Monday–Friday, 24 hours, and weekends	2 (8)	10 (22)
Staffing (FTE), median (IQR)	5.6 (3.6–9.6)	10.2 (6.8–15.0)
Level of intellectual disability
All levels (mild/moderate/severe/profound)	18 (72)	38 (83)
All except profound	2 (8)	4 (9)
All except mild	4 (16)	2 (4)
Other combination	1 (4)	2 (4)
Clients with a neurodevelopmental disorder, mean (SD)	62.1 (21.5)	51.1 (22.5)
Frequency of contact with clients
Less than once per week	1 (4)	2 (4)
Once per week	8 (33)	9 (20)
Twice per week	5 (21)	6 (13)
Three or more times per week	6 (25)	14 (30)
Other	4 (17)	15 (33)
Duration of contact with clients
1–3 months	0	7 (15)
3–6 months	7 (29)	20 (33)
6–12 months	13 (54)	20 (43)
≥ 12 months	4 (17)	4 (9)

Summary

Phase 1 was a comprehensive description of the geographical distribution, characteristics and service models of IST care in England. Specialist services for adults with intellectual disabilities who display challenging behaviour appeared to be operational across England, although London had the smallest number of ISTs. Following careful consideration of the clinical utility of the findings from the cluster analysis, we found that there were two IST models (enhanced and independent). The role of ISTs encompassed many different components of care, from the management of challenging behaviour in adults with intellectual disabilities to the facilitation of the discharge of inpatients with intellectual disabilities, the assessment and treatment of adults with intellectual disabilities, autism diagnostic assessments and often the support of adults with intellectual disabilities involved in the criminal justice system. Just over half of ISTs (52%) reported operating a daily help line (also called a duty line) staffed by health professionals with the capacity to respond immediately to crises, and one-third of the ISTs provided 24-hour and weekend support to adults with intellectual disabilities and families in distress. However, IST managers across the two models reported that the system appeared to lack flexibility when an individual was in crisis because of the limited/lack of alternative services to avoid admission and the small number of skilled social care providers.

Introduction

There is currently little evidence about whether different models of ISTs for challenging behaviour (i.e. dedicated vs. alternative) achieve better clinical outcomes for adults with intellectual disabilities who display challenging behaviour. There is a need for a systematic evaluation of whether or not a specific model of IST is optimal for treating and managing challenging behaviour in local communities, and able to deliver positive outcomes for patients and their families. For more information, please see the published protocol. 49

Methods

We conducted a cohort study of adults with intellectual disabilities, with a nested case–control comparison of two IST models. We included a random selection of 21 ISTs in England representing one of two models: enhanced or independent (Table 3). Random sampling ensured representation of different sizes of teams/caseloads, and both rural and urban services (where possible) for the second stage of the study.

Statistical analysis

The data analysis plan follows an a priori developed statistical analysis plan (see additional files; www.journalslibrary.nihr.ac.uk/programmes/hsdr/160124/#/documentation; accessed 3 March 2022).

Results

Participant enrolment

Recruitment of participants began in September 2018 and was completed in May 2020 (19 months). In total, 724 participants were screened, with 306 not meeting the inclusion criteria. Following review of the inclusion/exclusion criteria, 418 adults with intellectual disabilities were eligible to participate in the study and were approached by the IST or research team of each research sites and/or us. Just over one-quarter (n = 108) of eligible adults with intellectual disabilities declined participation and 310 adults with intellectual disabilities expressed an interest in the study. From this, a further 84 adults with intellectual disabilities declined involvement because of an inability to commit, lack of interest, health problems, or discharge by the time the researchers contacted them (Figure 5). In total, 226 participants were recruited to the study, with 115 adults with intellectual disabilities in the enhanced model and 111 in the independent model.

FIGURE 5.

The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) diagram.

Summary

Overall, analyses showed an improvement in ABC-C score from baseline to 9 months. However, unadjusted and adjusted analyses found that there was no significant difference between the IST models in ABC-C score at 9 months. In addition, there were no significant differences between IST models for any of the secondary outcomes at 9 months. It is possible that the function of the two models overlapped, including patient profiles and treatments delivered.

Introduction

The Transforming Care programme12 is aimed at enabling adults with intellectual disabilities and/or autism who display challenging behaviour to remain in their local communities, access the right support and reduce the number of costly inpatient admissions. Intensive community support, such as that provided by ISTs, is seen as a way to mitigate these challenges; however, there are a number of models of provision and, despite the prioritisation of ISTs and substantial financial backing by the government, no available economic evidence exists on the value for money for these services. The aim of the health economics component of the study was to derive and report the costs of each IST model and to investigate the cost-effectiveness of the IST care models (using two outcome measures in turn). The health economic component was carried out alongside the clinical evaluation. For more information, see the published protocol. 49

Methods

The inclusion/exclusion criteria for the IST service models and service users are described in Chapter 3. The study procedures, including recruitment, consent and outcome measures, were the same as those described in Chapter 3.

Economic analysis

The data analysis plan follows an a priori developed health economics analysis plan (HEAP) (see additional files; www.journalslibrary.nihr.ac.uk/programmes/hsdr/160124/#/documentation; accessed 3 March 2022).

Results

Summary

We found no statistically significant difference in societal costs between the models. We found no statistically significant difference in health and social care costs between the models. However, the independent model was more costly to operate per case than the enhanced model. This is because of the smaller caseload and the larger proportion of band 6 professionals in the independent model than the enhanced model. The marginally higher observed hospital-based care costs in the independent model were offset by higher community-based care costs and unpaid carer costs for those in the enhanced model at our primary economic end point of 9 months. Although observed health-related quality of life was slightly higher in the independent model than in the enhanced model across the entire follow-up period, with the resultant QALYs also higher for the independent model, the QALY difference did not reach statistical significance. Given this uncertainty in the results, with the lack of statistically significant differences in costs and outcomes, we looked at the likelihood that the independent model would provide better value for money than the enhanced model.

Our analyses suggest that there is a 50 : 50 chance that the independent model is cost-effective compared with the enhanced model. The probability of the independent model being cost-effective compared with the enhanced model does not fall below 50% and is closer to 52% at the standard NICE-preferred willingness-to-pay levels of £20,000–30,000 per QALY. It is therefore unlikely that there are any economic gains from choosing one model of care over the other. The main analyses are, on the whole, consistent with the sensitivity analyses using both broader and narrower cost perspectives. However, these findings should be treated with caution given the observational study design and the fact that, at the time of writing the analysis plan, we were unable to assess or adjust for the impact that COVID-19 would have had on the patterns and intensity of service use and support (costs) in both of these models.

Introduction

This chapter provides a comprehensive description of additional elements relating to the function of ISTs. These are service-specific data from the 21 ISTs that took part in the clinical effectiveness and cost-effectiveness study (Chapters 3 and 4). The key objective was to obtain an understanding of the IST role in the wider local care network of services for adults with intellectual disabilities who display challenging behaviour.

Methods

Data analysis

Descriptive data were summarised in tables and graphs, reporting percentages and/or ranges, where appropriate. We received 12-month referral data for 20 out of 21 teams (enhanced, n/N = 10/11; independent, n/N = 10/10). All qualitative information from the operational policy documents and the additional comments from the service-level data and referrers’ survey were analysed thematically. 56

Results

Patient throughput

The responses related to 20 ISTs. One IST manager was newly appointed to the role and was unable to extract information about the service as it coincided with the first lockdown of the COVID-19 pandemic.

The mean caseload of enhanced ISTs was 51 adults with intellectual disabilities. The mean number of referrals to ISTs in the enhanced model was 101 adults with intellectual disabilities at 12 months. Moreover, it was evident that ISTs in the enhanced model required a few weeks to respond to referrals, arranging assessments within 18 days (range 14–22 days) on average, with the management plan finalised within 7 weeks (mean 52 days, range 48–54 days). The engagement of adults with intellectual disabilities and their carers with the IST, as reported by IST managers and the NHS care note system, was high in both models (enhanced, 94%; independent, 95%) (Table 13).

TABLE 13 - Patient throughput data per IST model

Service characteristic	Model, mean (range)
	Enhanced (ISTs, n = 10)	Independent (ISTs, n = 10)
Caseload (number of patients)	51 (10–126)	30 (7–67)
Referrals per 12 months (number of patients)	101 (16–256)	80 (12–144)
Percentage of patients engaged	94 (80–100)	95 (92–100)
Days from referral to assessment	18 (14–22)	5 (4–7)
Days from assessment to delivery of management plan	52 (48–54)	33 (22–44)

Comparatively, the independent ISTs included a mean caseload of 30 adults with intellectual disabilities and received a mean number of 80 referrals in a 12-month period. In addition, ISTs in the independent model responded quicker to referrals than the enhanced model, arranging assessments within 5 days (range 4–7 days) on average, with the management plan finalised within 1 month (range 22–44 days) (see Table 13).

Responses regarding other IST roles, particularly training and engagement with other services, are reported in the subsequent sections.

Training of carers

Most sites (16/20) from both IST models reported that they provided training to carers that was focused on individual needs, taking into consideration additional diagnoses and including psychoeducation, raising awareness about intensive interaction for improving communication and recording (e.g. using the ABC-C chart, incident reports) of challenging behaviour, or sharing knowledge (e.g. dysphagia, attachment difficulties, sensory integration, active listening) to understand and implement the care plan to better support adults with intellectual disabilities who display challenging behaviour. The IST provided ongoing support to ensure evidence-based interventions, such as PBS, were embedded before they progressively reduced their input.

Engagement with other services

Intensive support team professionals from both models reported collaborations with a range of local services, such as mental health (n = 9), social care (n = 9), crisis teams (n = 9), forensic outreach and liaison services (n = 9), Clinical Commissioning Groups (n = 5), acute liaison nurses (n = 3), home treatment teams (n = 3) and other boroughs (n = 1) (Figure 6). Furthermore, ISTs supported transitions through working with educational placements and/or children services, and primary care to facilitate health checks and physical health investigations. ISTs were also committed to joint assessments with other agencies to identify suitable placements, or to determine a hospital placement if all else failed.

One independent IST stated that they had an on-call service between 20.00 and 08.00 for urgent advice or crisis management. This service was available to participants in their current caseload, but could extend to those who found themselves in crisis and adults with intellectual impairment who were not on the caseload. Therefore, they received calls from multiple sources, such as service providers, family carers, CIDSs, GPs and adults with intellectual disabilities. In a 6-month period (1 March–31 August 2020), this independent IST logged 343 calls in relation to the on-call service.

FIGURE 6.

The ISTs’ engagement with other services.

Referrers’ survey

The survey was completed by 31 CIDS health-care professionals who referred adults with intellectual disabilities to ISTs. Health-care professionals in CIDSs are described as ‘referrers’ in this chapter. The findings are not presented per IST model because the survey was directed to CIDSs, aiming to explore the levels of satisfaction of current IST procedures and practices, irrespective of the operational models.

Reason for referral to the intensive support team

A broad range of reasons for referral were reported and are listed below, ranked in order from most to least common (Figure 7):

1. to develop better understanding and support the management of challenging behaviour (e.g. risk of harm to self or others) in adults with intellectual disabilities

2. to support complex health-care needs

3. to provide care following involvement with the criminal justice system

4. to prevent placement breakdown and risk of psychiatric inpatient admission

5. to guide the transition to adult services for young adults presenting with challenging behaviour

6. to support the training needs of staff regarding PBS or Challenging Behaviour frameworks.

FIGURE 7.

Reasons for referral to the IST.

A few (n = 3; 10%) referrers specifically mentioned referral to ISTs for functional analyses with regards to challenging behaviour. A small number (n = 2; 7%) of referrers mentioned the Dynamic Support Database (DSD) tool. The DSD is a screening tool that is used by referrers to monitor adults with intellectual disabilities, autism or both who are at risk of a hospital admission. The overall rating of the tool (i.e. red, amber or green) reflects the level of risk of admission to inpatient services. If the individual’s score was amber or red, they were referred to the IST. 84

Referral process

According to referrers, ISTs responded to referrals in 0–6 days. A few (n = 3; 10%) referrers stated that referrals were discussed with the IST lead prior to making the referral to ensure that the person was eligible for specialist support. Such informal conversations were seen as helpful because they provided a swift response at a point of crisis. Only one referrer described the referral process as part of the CIDS weekly meetings, to which the IST lead was invited and at which they could discuss urgent cases.

Referrers (n = 28; 90%) expressed their satisfaction with the referral process, which they believed contributed to the prevention of inpatient psychiatric admissions. Five (16%) referrers thought that the enhanced model facilitated proactive and rapid work between professionals, providing better quality care to adults with intellectual disabilities who display challenging behaviour. The vast majority of referrers (n = 29; 94%) would recommend the IST to other colleagues, describing IST staff as very understanding, skilled, helpful and responsive.

Delivery of intensive support team care

The 31 referrers accounted for 130 referrals to ISTs, of which over 112 (86%) had been accepted for IST support. The mean number of referrals per IST professional was 5 (range 1–30) over the preceding 12 months. Adults with intellectual disabilities who display challenging behaviour received IST support for a period ranging from 3 to ≥ 12 months (Figure 8), although a small minority were seen for up to a month, which is likely to be a period of assessing eligibility for the service or resolution of the original reason for referral. Twenty-six referrers (84%) stated that the length of time of support given by ISTs was appropriate.

FIGURE 8.

How long adults with intellectual disabilities were under IST care.

Free-text questions addressed the support offered to adults with intellectual disabilities, family carers, paid carers and other professionals by ISTs; the way that the IST compares or fits with other services; and the ISTs limitations.

Support offered by intensive support teams

Adults with intellectual disabilities

The IST co-ordinated the care plan of the adult with intellectual disability. The IST conducted home visits to assess and manage challenging behaviour, complete risk assessments and monitor medication.

Family carers

Referrers stated that the IST liaised with family carers on a weekly basis through telephone calls and home visits to monitor progress and provide emotional support to family carers. In addition, the IST staff signposted family carers to relevant services if needed, and provided a dialogue regarding sourcing appropriate care provision.

Paid carers

The IST worked with paid carers to enable them to follow and implement the PBS plan. The IST outlined the functions of behaviours to paid carers (i.e. helping them to understand behaviour triggers), offered additional skill training (e.g. anxiety management, understanding autism, modelling of specific behavioural strategies), and carried out periodic service reviews, including revision of the PBS plan. The IST would consider staff well-being and debriefing after episodes of challenging behaviour to ensure that paid carers were able to maintain good practice.

Other professionals

The IST dedicated time to helping referrers understand the IST role and promoting multidisciplinary work with CIDSs. They worked collaboratively with other services/teams during inpatient admission and discharge planning to create and review care plans and risk assessments, facilitated CTR36 and contributed to service development projects, such as developing pathways for challenging behaviour.

How the intensive support team compares or fits with other services

Fits well with the community intellectual disability service

Referrers stated that the IST had a good knowledge of the networks and relationships between different support teams. Overall, it was highlighted that working within (or closely with) the CIDS enabled the IST to respond to the crisis more effectively, demonstrating a proactive approach, and they were jointly commissioned, with health and social care input. One referrer reported that they were currently working to embed the IST in the CIDS so that the services were not separate.

Comparison to other services

Referrers reported that ISTs were able to provide more accessible, responsive and intensive input to crisis situations as the main service for this client group. In addition, the outreach service was described as ‘great, as it is an opportunity to discuss and reflect on individual case studies’, with the commissioners (managers responsible for service development and care prioritisation) holding positive views of the IST. It was also mentioned that referrals are limited to challenging behaviour, which may be a narrow remit. There were some contradictory views: one respondent stated that the IST was specialist in their field; another stated that the IST had lost some degree of specialism in recent years, had become slightly less cohesive and was in need of a clinical lead.

Limitations of the intensive support team

Twenty-seven referrers (87%) reported a number of limitations related to the IST’s function, including resources, focus on PBS plans, and lack of leadership and service clarity.

Core functions

A number of referrers (n = 11; 35%) were concerned about the IST’s access to resources, including funding, staffing and flexible working hours. The responsibility of responding to crises may detract from more therapy-based work, such as functional assessments or staff and carer support and training. There is significant variation by locality and some roles may be under-represented, despite potentially being central to the implementation of behavioural interventions (e.g. specialist support workers). One referrer suggested that support workers could complement the service and assist with face-to-face contact when needed.

Other issues included the fact that sometimes ISTs focused too much on PBS when many placement breakdowns were due to mental illness and some behaviours still need to be managed by medication. Following this, a referrer emphasised that sometimes there can be underlying unmet health needs that may not have been identified by referrers. As a result, the IST invests resources and time in inappropriate referrals. A number of referrers (n = 8; 26%) reported that the boundaries between services were unclear, which caused confusion regarding the way in which the CIDS and IST can work collaboratively (e.g. who is in charge of a case, which parts of the care plan are delivered by whom); a lack of clarity surrounding who was in charge of care co-ordination; and unclear referral criteria, which may prevent individuals from gaining help from the appropriate services.

Minimises engagement with mainstream services

A few (n = 4; 13%) referrers stated that ISTs appear distinct from CIDSs and do not utilise all the expertise that may be available in a locality, including strong liaison with mental health services. This results in services being isolated, which, in turn, produces unrealistic expectations from CIDSs. One referrer considered the potential that having independent ISTs deskills professionals in the community services with regard to responding effectively to challenging behaviour. A cascade of expertise, rather than a narrowly focused service, might be a better approach.

Summary

Patient throughput data from the two IST models indicated that the operation of ISTs varied somewhat between models, with enhanced ISTs having a 41% larger caseload and 21% more referrals than the independent ISTs over 1 year. The increased size of the caseload and flow of referrals in enhanced ISTs compared with those of independent ISTs, whose caseload and number of referrals were less demanding, were associated with delays in responding to the needs of adults with intellectual disabilities who display challenging behaviour.

However, some of these data were estimates provided by IST managers during the first lockdown of the COVID-19 pandemic and, therefore, they were not fully reflective of the total work undertaken by both CIDSs and ISTs during that time. Therefore, we advise that these data should be interpreted with caution.

We found that teams in the independent model had smaller caseloads. This is one of the characteristics of the intensive case management model in adult mental health services. 85 However, our present work does not support a choice of IST model based on caseload size only.

Referrers expressed their satisfaction with the referral process; acknowledged the support provided to adults with intellectual disabilities, carers and other services to be regarded as suitable; and recommended the future use of ISTs. Regardless of the positive comments about the contribution of ISTs to the care of adults with intellectual disabilities, referrers mentioned a number of limitations of the operation and functioning of ISTs that should be addressed to improve care provision. However, in our study, referrers from CIDSs valued the ISTs’ input and, on the whole, the IST response was considered prompt and collaborative. Limitations to the model were also reported in terms of its role and focus within the wider provision of community specialist services to a vulnerable, complex and underserved population.

Introduction

This chapter focuses on the qualitative investigation into multiple stakeholders’ views and experiences of IST care. Specifically, we interviewed IST managers, IST professionals, family carers, care home (paid) carers and adult users of ISTs with mild to moderate intellectual disabilities. We have used the Consolidated Criteria for Reporting Qualitative Studies,86 a 32-item checklist, to guide the reporting of this study (see Appendix 2).

Methods

We carried out individual semistructured interviews and focus groups to explore stakeholder experiences and perspectives of ISTs in England in urban and rural areas (see Appendix 2). Purposive sampling aimed to achieve variation in age, work experience, sex, ethnicity, professional background, carer roles and relationship to the person with intellectual disability in both IST models.

Five trained and experienced female researchers, employed as either study managers (doctoral researcher, n = 1; Doctor of Philosophy student, n = 1) or research assistants (Master of Science graduates, n = 3), interviewed IST managers from 14 of the 21 participating ISTs who took part in the phase 2 evaluation (see Chapters 3 and 4) throughout the study period.

We intended to concentrate the remaining interviews with IST professionals, family carers and paid carers, and adults with intellectual disabilities on seven ‘case study’ sites. ‘Case study’ sites were selected to represent service variability within each IST model (enhanced and independent) identified from our previous survey data analysis (see Chapter 2). In addition, these services were selected to capture the service variability within each model, including location in urban and rural areas, size of caseload, operational procedures, funding arrangements and length of service’s existence. Further details of these seven sites are provided in Appendix 2. This part of the project coincided with the COVID-19 pandemic and consequent lockdown, leading to significant difficulty in recruiting and remotely interviewing a sufficient numbers of adults with mild to moderate intellectual disabilities. Therefore, we carried out some of the interviews at different sites from those originally chosen (Table 15).

Recruitment took place over a 12-month period between October 2019 and October 2020. Focus groups lasted ≈ 60–80 minutes; individual interviews lasted ≈ 25–35 minutes. IST managers and professionals from all sites participating at the time were interviewed relatively early in phase 2. Adults with intellectual disabilities, family carer and paid carer participants who expressed an interest in taking part in the qualitative phase of the study were interviewed near the time of the patient’s discharge or around the 9-month follow-up, whichever was sooner. We had to adapt the in-person interviews to remote contact because of the lockdowns necessitated by the COVID-19 health emergency. Therefore, we offered a range of remote options to adults with intellectual disabilities and to their family carers or paid carers. These included a range of digital platforms and telephone calls, ensuring that, for all stakeholder interviews, we followed the research sponsor governance about confidentiality that was available at the time.

All semistructured interview schedules for each stakeholder group were developed with the help of the PMG, and the Service User and Family Carer Advisory Group. They covered views on current IST practices, access to the IST, aspects of IST care that were perceived as important, barriers to IST care and suggestions for good practice. For the study topic guides (with prompts) for each stakeholder member, see additional files (www.journalslibrary.nihr.ac.uk/programmes/hsdr/160124/#/documentation; accessed 3 March 2022).

Data analysis

Interviews and focus group discussions were audio-recorded and transcribed verbatim by an external UCL-approved agency. All identifiable information was removed at this phase, following review of the transcripts for quality assurance by the research team. Transcripts were not shared with study participants. Data were analysed using thematic analysis56 conducted using NVivo (QSR International, Warrington, UK) specialist software for data handling. This included familiarisation of the data; generating of initial codes; generating themes; reviewing, defining and naming themes; and compiling this report.

A staged, collaborative and primarily inductive analytic approach was adopted, allowing us to iteratively develop a set of themes that captured key concerns and topics, and more abstract or underlying issues. Two researchers (AK and LH) familiarised themselves with the data independently, developed themes and subthemes, and liaised with the qualitative expert (NM) and the chief investigator (AH) several times to resolve any discrepancies and discuss the final definitions of themes and subthemes.

Although the numbers in the stakeholder subgroups that linked to each IST were relatively small, triangulation of the various stakeholder perspectives allowed us to obtain a broad picture. Thus, we were able to compare the two IST models and different stakeholders’ perspectives, and analyse the data set as a whole to understand broadly common views and experiences of ISTs. The analysis involved close collaboration between the qualitative researcher, the qualitative lead and other key members of the study team. The Service User and Family Carer Advisory Group were also consulted to provide their views on emerging themes and findings.

Results

Summary

This chapter described multiple stakeholders’ experiences and views of ISTs in England. Overall, there were common issues in both IST models, with no major differences detected in the experiences of stakeholders. Although recruitment difficulties meant that the qualitative study included a smaller than intended number of respondents in some stakeholder groups, findings suggest that families, paid carers and adults with intellectual disabilities value elements of IST care, find it supportive, and value staff making efforts to implement reasonable adjustments and being involved in care planning.

However, there appear to be tensions regarding expectations of what good care looks like, whether or not it is sufficiently tailored to individual needs and how the role of the IST is evolving. The IST staff responses allude to IST services having a rather narrow remit and therefore other patient groups (i.e. people with mental ill health or people with autism but without intellectual disabilities) may be disadvantaged owing to a lack of appropriate services. There are clear concerns about paid carer turnover and IST professional recruitment and retention, especially as many such teams are led by nurses or psychologists. IST managers appear to be weary of financial constraints and the need to justify the existence of ISTs in the absence of key performance indicators. Training is seen as a core function of IST staff, who often work with support workers or family carers to implement behaviour support plans. We understood the stakeholders to indicate that ISTs are not part of a wider crisis service network; they may lack the range of relationships with such services, especially those provided by adult mental health, and may not be visible enough to their own client base and their carers.

These findings are limited by the smaller-than-anticipated number of interviews that we were able to conduct. The recruitment difficulties coincided with the start of the COVID-19 pandemic and the first national lockdown, and particularly affected family carers, paid carers and adults with mild to moderate intellectual disabilities. Despite NIHR advice on adaptations to facilitate research studies during the COVID-19 pandemic (e.g. remote data collection, use of digital technology), we were unable to overcome some of the challenges associated with the abrupt move to remote working and data collection. Detailed information about the impact of COVID-19 on the study is presented in Chapter 7.

Recruitment challenges

Collaborating NHS sites took much longer than expected (≈ 2–3 months) to provide local approvals, confirm capacity and capability, and provide a letter of access for the researchers to recruit participants locally. Most NHS sites had limited to no Clinical Research Network support; when such input was available, it took time to allocate a clinical study officer to support participant recruitment to a national portfolio study. Furthermore, clinical teams had very few new referrals, as service users were on IST caseloads for long periods. A further challenge was the turnover of clinical studies officers/research nurses who were also leaving their posts, which contributed to the unstable flow of referrals for weeks until a new person was employed, set up and trained to support screening and recruitment. Last, conversations with research and development departments that had expressed an interest in joining the study stalled for a variety of reasons, for example being unable to identify a principal investigator or meet the local recruitment target.

Despite the capacity and capability assessment that led to the service taking part in the study, we found that there was some resistance from service managers to share information about adults with intellectual disabilities with no capacity or a next of kin who would take responsibility for their participation in research. As is often mentioned, adults with intellectual disabilities are hard to engage in research owing to numerous gatekeepers such as support staff, professionals and families, especially for those who lack capacity. Researchers have to continuously educate them on the legitimacy of study and its governance. The project manager had to contact four professionals (i.e. care home worker, care home manager, IST manager and clinical practitioner) to obtain permission to visit a participant. Usually, care home managers/social workers were verbally in agreement to join the study, but they would request a best-interests meeting before a final decision could be made. Care home providers also requested to receive consent from family members, although care home providers were the main carer for the person with intellectual disability. Other problems related to obtaining updated contact details of carers of potential participants. There had been instances in which 2.5 months elapsed from first contact to baseline. Figure 9 presents phase 2 participant recruitment from June 2018 to May 2020.

FIGURE 9.

Participant recruitment graph.

COVID-19’s impact and adaptations

Three NHS sites withdrew their interest in supporting the study when NIHR suspended all non-COVID related research in March 2020. There were five new referrals from all sites up to the end of May 2020. Following review of all referrals to the study, including those previously uncontactable, 32 potential participants were identified, of whom 14 were still eligible to take part. The research team received ethics approval to complete the consent process and research assessments remotely using digital tools [e.g. through Zoom calls (Zoom Video Communications, San Jose, CA, USA), telephone calls, scanned copies via e-mail] to complete recruitment. However, conducting interviews with family carers, paid carers and adults with (mild to moderate) intellectual disabilities, although mainly feasible, also presented difficulties for several reasons:

• Digital poverty (e.g. lack of computer, smartphone, WiFi). Family carers reported having no access to a computer, laptop, tablet or smartphone and, in a few instances, no access to a WiFi network to conduct the interview remotely using digital technology platforms.

• Insufficient support and knowledge of digital platforms (e.g. Zoom, e-mail, scanning) during the first national lockdown when all of these processes were implemented at pace. Family carers described not being confident users of digital platforms, including accessing e-mails and/or logging into Zoom/Microsoft Teams^®. As a result, sharing PISs and ICFs to be signed and returned electronically was difficult for family carers.

• Changes as a result of COVID-19 (e.g. service user’s return to family home, change of care provider, move to a new house) had an impact on the 9-month follow-up assessments. Families, new service managers or providers were not previously informed of the study and did not commit to completing the study during the COVID-19 pandemic.

• Obtaining consent from adults with intellectual disabilities with mild to moderate intellectual disabilities who did not have sufficient verbal ability to provide informed consent or who had a hearing impairment had an impact on the screening and identification of potentially interested participants from both the participating ‘case study’ sites and the remaining ISTs. Carers (family and paid) were also hesitant to attempt to discuss the PIS and complete a ICF with the adult with intellectual disability at the time and to facilitate the interview. Many were concerned that additional changes to routines could trigger more challenging behaviour.

• The emotional burden (e.g. increased anxiety, challenging behaviour, carer responsibilities) and change of priorities (e.g. family bereavement, limited interest in research) during the first national lockdown had an impact on the overall number of recruited family and paid carers in addition to that of adults with intellectual disabilities. Some stakeholders who were previously interested in taking part in the qualitative work cancelled the interview because of additional caring responsibilities. Adults with intellectual disabilities were also stressed, and carers reported being exhausted owing to the change in daily routine. In addition, paid carers at care homes were separated from their family homes to take care of vulnerable adults with intellectual disabilities and minimise the transmission of COVID-19 by staying in care homes between shifts or covering colleagues who were on sick leave at the time. Therefore, priorities shifted during the COVID-19 pandemic, leading to lower recruitment rates in the qualitative work than in the published study protocol,49 particularly for adults with intellectual disabilities. Participating in interviews was less important to family carers and paid carers, whose responsibilities changed within a week when the national lockdown was announced in March 2020. Overall, the COVID-19 pandemic had an impact on the screening and recruitment of family and paid carers and adults with intellectual disabilities to a significant extent during the first national lockdown, resulting in a smaller sample size than anticipated.

Our related paper on how to enhance participation of people with intellectual disabilities in research has been published elsewhere. 87

Introduction

In this chapter, we present the main study findings, placing them within the context of existing evidence; discuss the strengths and limitations of the study; and make recommendations for future research.

Main findings

There appears to be clinical and statistical support for two models of intensive support services: independent and enhanced. Although they have distinct characteristics, they also have several overlapping functions and there is little to distinguish them in terms of medium-term service user clinical outcomes. The profile of the caseload and the pattern of service use costs and health-related quality of life are similar for both models. Based on health-related quality of life, the two models are equally effective at the NICE threshold for treatments of £20,000–30,000. The care provided is mainly to adults with intellectual disabilities who display challenging behaviour, but we found limited evidence for an expansion of the remit to supporting discharge from psychiatric hospitals and intervening in mental health crises. The services are well liked by service users and their carers and are seen as essential in complementing the work of professionals in the specialist CIDSs, as reported by referrers from those services. There are suggested areas for improvement, including a clearer role in the wider range of services available during a crisis and the need for interventions beyond behavioural approaches. As expected, the majority of the participants in both models were receiving multiple other medications in addition to a psychotropic medication.

Strengths and limitations

This is the first study, to our knowledge, that has systematically investigated the models and function of ISTs in England. The present study went further than previous evaluations of such teams in single sites, encompassing many parts of England in real-world practice. We were able to establish a comprehensive picture of those services and of the outcomes that they achieve in the medium term for adults with intellectual disabilities who display challenging behaviour. The study was fully powered, with very good retention of participants (< 10% attrition) and low data missingness. We randomly selected ISTs in both urban and rural areas as research sites, and study participants were representative of the population in IST caseloads; therefore, we believe that there is a reduced risk of bias.

The findings from this study are highly relevant to the support of very vulnerable individuals with intellectual disabilities in the community and are potentially applicable to other UK countries that have a similar health and care structure.

The study also had its limitations:

1. It might be subject to possible respondent social desirability bias.

2. We may have omitted other elements of functions relating to ISTs that could be of importance but that were not captured in the survey during the mapping phase of IST (phase 1). For example, we did not ask specifically about integration with other local mental health services, gatekeeping roles, information sharing or record keeping.

3. We may have over/underascertained the number of ISTs and therefore the typology may lack precision. However, we argue that the resulting typology has an empirical basis and face validity based on clinician experience of such services and self-identification by ISTs. We accept that the typology has no theoretical basis in literature relating to intellectual disability, but it has largely adopted functions and indicators from publications on mental health crisis care, which itself suffers from limited evidence of quantifiable functions of home treatment and intensive case management.

4. This was a cohort study with a nested case–control comparison, not a randomised controlled trial; therefore, it is subject to selection bias, although there were no differences between the participants in each IST model at baseline.

5. The turnover of paid carers may have affected the reporting of challenging behaviour if the carer had not known the person with intellectual disability well enough.

6. The lack of statistical significance in clinical outcomes between models may be an indication that adults who are referred during a crisis will recover substantially in the short to medium term (regression to the mean), especially in cases where the disorder is remitting/relapsing, as is the case with challenging behaviour. Although both models appeared to produce reductions in challenging behaviour, we cannot say with any certainty that the models were both effective as we did not include a usual-care comparator.

7. It is likely that there has been some impact of the COVID-19 pandemic, but we were unable to fully adjust for it on the patterns and intensity of service use and support (costs) in both models. For example, service-level data were lacking in some instances because managers at the research sites were unable to access data during the first and subsequent lockdowns as most were working from home. Furthermore, we found that we were not able to access interviewees with intellectual disabilities as many participants, including their caregivers, were mentally distressed or did not have access to digital platforms and support to enable them to participate in an interview. Therefore, although we used a sampling frame to ensure representation of seven case study sites to enable us to gain a deeper understanding of stakeholder views of IST support, we had to include three further research sites from the same IST model to increase the number of interviewees.

Findings in the context of existing literature

The care and support of adults with intellectual disabilities who display challenging behaviour remains a policy priority, and there is a long-term commitment to improve provision. 34,44,88 At this time, there is no specific guidance or indication of expected outcomes from ISTs, such as duration of engagement or size of caseload, beyond a reduction in inpatient bed-days. However, this reduction is not operationalised and appears to be left to the discretion of the clinicians involved in each case. One potentially useful indicator might be the difference between estimated and actual discharge date. Findings from crisis care in adult mental health indicate that compulsory admissions are not reduced in the 2 months following a crisis;89 therefore, the role and skills of the staff and of the IST model in the crisis pathway for adults with intellectual disabilities requires further elucidation. The fidelity of the IST model is not well conceptualised compared with the fidelity of the adult mental health crisis resolution model, and the breadth and delivery of interventions should be expanded beyond that of Positive Behaviour Support.

We found that ISTs were more common than previous investigations had suggested, and this growth may in part be driven by the national Transforming Care programme. 44 Davison et al. 29 explored the provision of specialist support teams (called peripatetic support teams in their study) a decade ago (in 2012) within the overall UK landscape of services for people with intellectual disabilities across the lifespan who display challenging behaviour. The authors identified 46 specialist teams in the UK, 40 of which were in England. However, only half of the teams that were sent a survey completed it, resulting in a much lower response rate than the 90% response rate in the present study. The authors concluded that the IST provision had reduced, in contrast to our findings, which have shown an increase in such services, at least in England. Since then, 34 new ISTs have been established in England alone,53 which underscores the belief in the usefulness of ISTs in the management of adults with intellectual disabilities who display challenging behaviour.

Our findings are broadly in agreement with the findings from Davison et al. 29 in that therapeutic approaches are mainly behavioural (the majority explicitly mentioned PBS); may offer a range of other interventions, although they were poorly defined; and few operate extended hours or have a remit to work with children.

Previous evidence suggested that embedded teams may be effective,41 whereas other studies have demonstrated the positive contribution of standalone specialist behaviour support over standard treatment for adults with intellectual disabilities to reduce challenging behaviour. 40 However, these were single-site studies, and they evaluated services that had a clear operational remit. It is telling that neither of these evaluated services exist today. The findings that there is no difference in clinical effectiveness between the two models, but that overall they both appear to be beneficial and are well liked by service users, their family carers and referrers could help the potential roll out to all UK countries based on local need and available resources. The majority of independent ISTs regularly used outcome measures. Our findings were consistent with previous research33,90 indicating that outcome measures varied widely across services. However, the HoNOS-LD91 was the most consistent and often the only outcome measure used.

Iemmi et al. 92 reported on the economic evaluation of one IST delivering PBS to five patients. Their study claimed that the IST contributed to improved outcomes in challenging behaviour and increased community participation at a total cost to health and social care services of £2296 per week. Hassiotis et al. 40 highlighted that the IST was cost neutral when service use was taken into consideration. Our present economic evaluation highlighted that the service costs of enhanced ISTs are not significantly different from those of independent ISTs, and nor are the health-related quality-of-life gains. As the clinical and cost findings align, we suggest that neither IST model has an advantage over the other. However, as the burden of challenging behaviour in terms of out-of-area prolonged hospitalisations and overprescription of psychotropic medication to adults with intellectual disabilities remains substantial,3,13,22 it is likely that costs could be offset by the establishment of an IST with a cost per case of between £4980 and £10,122 for the enhanced and independent models, respectively, which is significantly cheaper than current costs and well within the NICE cost-acceptability threshold. However, given that these are not strictly novel services, they must work harder to justify their work beyond and above usual care.

Legislation and policy encourage professionals to work with carers in ways that complement and enhance their roles to maximise their capacity to care for a vulnerable adult. 44,78 Family carers are recognised as a valuable resource for their relatives, community, services and governments. A systematic review explored the formal support received by family carers of an adult with intellectual disability who display challenging behaviour. 93 James93 concluded that family carers need to ‘fight’ for psychological support and psychoeducation from different service systems. Carers, however, reported being satisfied with professionals once they accessed services. Another study94 suggested that easy access to services and approachable professionals, practical guidance and psychological support are imperative features of future service development for family carers of adults with severe intellectual disabilities who display challenging behaviour. The views and experiences of our carer and service user stakeholders confirmed that the three valued features of IST care were accessible and flexible services, person-centred care and carer involvement. Although we found examples of good practice in the implementation of reasonable adjustments, we identified a need to strengthen consistent communication with adults with intellectual disabilities who display challenging behaviour, and a need to empower them to be more in charge of their treatment and self-management.

Hemmings et al. 95 reported on findings from three UK studies on the essential elements of community care for adults with intellectual disabilities from the perspective of professionals working in those services. Although the review was focused on people with mental health problems, it mentions interface with mental health services as a particular challenge and area for development. The studies also indicated that there was no support for mental health intensive care services for people with intellectual disabilities, but there was a desire to establish the presence of workers with knowledge of intellectual disability within existing structures. Our professional respondents found the role of the IST within the local service landscape a challenge and acknowledged issues with the access and flow of referrals. Often, ISTs were seen as the last resort when a patient could not be referred to other generic mental health services.

A report by the Royal College of Psychiatrists96 summarised the range of services available to people with intellectual disabilities with mental ill-health. ISTs have been described as being single- or multiprofessional, as offering specialist assessment and treatment or signposting to other services and as having defined staff roles,97 but also as often being difficult to access. 98 However, this literature is not directly relevant as it does not include stakeholder experience and is mostly focused on mental health services distinct from those related to challenging behaviour.

The Transforming Care programme44 set out its intent of improving community services for people with intellectual disabilities in the Building the Right Support34 plan, an evaluation published in 2018 based on 10 case studies and other information. Many areas saw the establishment of ISTs as part of their local quality improvement of services for people with intellectual disabilities, but these were only a small part of the overall evaluation of a policy programme. However, the findings indicated that significant gaps remained in the community support for a range of issues, including care of young people, mental health and care of autistic individuals, and attention to prevention. A consultation with stakeholders addressed the whole of the programme and it was not possible to disaggregate the stakeholder findings that related specifically to ISTs.

A particular concern, in our opinion, is the lack of a clear remit of ISTs that corresponds to a model of care and includes specific active ingredients and key performance indicators. Research on Crisis Resolutions Teams46 indicates that longer hours and the presence of a psychiatrist in the team may be associated with fewer admissions, and that stakeholders value integration with other services, home-based care and a core team around an individual. Medical prescribing and staff training were also seen as important and supported by guidelines. Findings from this study also indicate that eligibility for care may be a significant barrier for certain patient groups, for example where there is no confirmed diagnosis of intellectual disability, and these individuals are likely to be left unsupported. Clarity regarding which service can provide care is essential, especially as it is shown that contact with crisis care in the first 12 months of discharge leads to re-admission. 17

Implications for practice

The Building the Right Support34 plan proposed nine pillars central to the improvement of community support for people with intellectual disabilities who also display challenging behaviour, are autistic or have mental ill-health. Several pillars (e.g. a good and meaningful everyday life; person-centred, planned, proactive and co-ordinated care; choice and control) are value statements and some (e.g. mainstream NHS services, specialist health and social care support in the community, support to stay out of trouble) point towards specific services or interventions that could prevent challenging behaviour or effectively support those individuals to remain in their communities.

Although ISTs are mentioned, their role in contributing to the overall objectives of the Building the Right Support34 plan is unclear and not stated in recently released documents. An issue also remains regarding the profile of service users eligible for IST care compared with other services that cover offenders with intellectual disabilities, who have very different needs from the majority of people who display challenging behaviour. In the course of the present research, we found that a minority of ISTs were asked to change their role in response to local changes in service provision or other factors. As ISTs become more embedded in the discourse of community support for adults with intellectual disabilities whose behaviours challenge, the anxiety around their funding continuing may lessen if they are recognised as essential in maintaining those individuals in their local communities. Clearly, this was a concern voiced by IST managers.

Our study cannot draw definitive conclusions about the critical care components of ISTs, but it is clear that these are valued services that have been considered for many years now as central to the effective management of people with intellectual disabilities who display challenging behaviour. However, utilising the service appropriately and mandating its establishment within a modernised approach to managing challenging behaviour and supporting people locally requires a revised definition of the role that is informed by stakeholders’ views and research findings. In particular, we have found several commonalities with relevant research from Crisis Resolution Teams and those lessons must be heeded regarding the content of the IST’s involvement, the fidelity of its approach and its position in the acute care system,99 regardless of the type of IST model. Recently, there has been interest in creating a stratified approach to the care of service users with intellectual disabilities who are at risk of admission. Bohen and Woodrow100 and Mottershead and Woodrow84 have published some initial findings from the development of the Dynamic Support Database. Although such work is in its early stages, it may be promising in refining the profile of service users requiring intensive support to avoid admission, pointing towards prevention and intervention strategies, and contributing to the specification of ISTs.

We argue that ISTs cannot remain outside any discussions about a national service model for people with intellectual disabilities, nor be an afterthought that depends on changing commissioning priorities. They must be a serious contender for managing acute crisis care, in addition to a host of other functions that must be fully operationalised and agreed between a variety of stakeholders.

Research recommendations

Following the guidance from NICE and the Transforming Care programme,12 working in partnership with adults with intellectual disabilities, their families and carers would help ensure any investment is well managed. Based on the findings of the study and taking into consideration the evidence-base required by commissioners and professionals responsible for the care and support of adults with intellectual disabilities, we make the following recommendations for future research:

• A randomised controlled evaluation of ISTs against treatment as usual. Treatment as usual will have to be redefined (i.e. not solely understood as lack of ISTs) because of several policy changes and the likely expansion of ISTs across all areas in England.

• Identification of the key elements of good intensive support and its role in the crisis pathway for adults with intellectual disabilities who display challenging behaviour across all levels of intellectual disability.

• Examination of wider system challenges that impact staff turnover and well-being and whether or not these may affect patient care.

• Further analysis of the data set generated by this study.

• Development of service model fidelity.

Summary of findings and implications

This study is, to our knowledge, the first to systematically evaluate ISTs in England. The findings suggest that there has been progress, for example in the number of ISTs available across the country, which are broadly well received by stakeholders who use the services and also by referrers. In recent years there has been a paucity of research around mental health crisis support for people with intellectual disabilities who may also display challenging behaviour. At the same time, there is ongoing concern regarding people with intellectual disabilities across the lifespan who remain inpatients in mostly out-of-area private assessment and treatment units. ISTs appear to have little to do in supporting repatriation and, in the main, are local services supporting specialist community intellectual disability teams. An approach that is better integrated with other provision, encompasses well-defined intensive support and has a clearer remit of ISTs’ role in the crisis pathway may be required.

In our study, we had a rather small number of admissions over 20 months of recruitment, about one or two per month for all areas, and 40 discharges. Therefore, for the majority of participants, it is possible to support them in their localities, but a rethink of utilising services and care models will need to be considered for those who display severe challenging behaviour and aggression. Although, overall, stakeholders were pleased with the IST offer regardless of the model, it is of some concern that the care provided lacks fidelity beyond a behavioural framework. There are clearly a number of unmet needs to do with family carer burden or paid carer attitudes and support that also need to be addressed. It would appear that the core role of ISTs as traditionally conceived has not changed much in the past 40 years, despite our better understanding of the mental health needs and emerging multimorbidity of people with intellectual disabilities. We argue that the service model to support adults with intellectual disabilities who display challenging behaviour is less important, but that there are imperatives for the development of a high-fidelity acute-care framework that is part of all discussions around improving support for people with intellectual disabilities.

Contributions of authors

Angela Hassiotis (https://orcid.org/0000-0002-9800-3909) (Professor of Psychiatry of Intellectual Disability) was the lead applicant and principal investigator. She oversaw delivery of the project, led all aspects of the work, and supervised the research team, except for the health economic team.

Athanasia Kouroupa (https://orcid.org/0000-0003-3659-160X) (Research Fellow) contributed to recruitment of the phase 2 research sites, study set-up, data collection, database management, and qualitative coding and analysis. She also led the write-up of this report and supported the work of the Project Advisory Group.

Leila Hamza (https://orcid.org/0000-0003-3439-6800) (Research Assistant) was responsible for participant recruitment, formulation of quantitative data and analysis of qualitative transcripts of interviews with adults with intellectual disabilities.

Nicola Morant (https://orcid.org/0000-0003-4022-8133) (Associate Professor) was a co-applicant. She developed an analytical framework, supervised the qualitative analysis and contributed to the write-up of qualitative data.

Ian Hall (https://orcid.org/0000-0002-5669-1571) (Consultant Psychiatrist) was a co-applicant. He supported the interpretation of the phase 1 and 2 study findings.

Louise Marston (https://orcid.org/0000-0002-9973-1131) (Associate Professor in Statistics) conducted the quantitative analysis of clinical outcomes in phase 2 and supported the write-up of the quantitative evaluation.

Renee Romeo (https://orcid.org/0000-0003-3871-9697) (Reader in Health Economics) was a co-applicant. She led all aspects of the economic evaluation and supervised the researchers working on the economic evaluation.

Nahel Yaziji (https://orcid.org/0000-0002-2273-7957) (Research Associate in Health Economics) conducted the health economic evaluation analysis.

Rebecca Jones (https://orcid.org/0000-0001-6924-0924) (Principal Research Fellow) conducted the quantitative analysis of outcomes in phase 1.

Ken Courtenay (https://orcid.org/0000-0002-1098-271X) (Consultant Psychiatrist) was a co-applicant. He supported the interpretation of the phase 1 and 2 study findings.

Peter Langdon (https://orcid.org/0000-0002-7745-1825) (Professor in the Centre for Educational Development, Appraisal and Research) was a co-applicant. He supported the interpretation of the phase 1 and 2 study findings.

Laurence Taggart (https://orcid.org/0000-0002-0954-2127) (Reader in Nursing and Health Research) was a co-applicant. He supported the interpretation of the phase 1 and 2 study findings.

Vicky Crossey (https://orcid.org/0000-0003-4354-8853) (Consultant Psychiatrist) was a co-applicant. She supported the interpretation of the phase 1 and 2 study findings.

Brynmor Lloyd-Evans (https://orcid.org/0000-0001-9866-788X) (Senior Lecturer) was a co-applicant. He supported the interpretation of the phase 1 and 2 study findings.

Publications

Hassiotis A, Walsh A, Budgett J, Harrison I, Jones R, Morant N, et al. Intensive support for adults with intellectual disability and behaviours that challenge: a survey of provision and service typologies in England. BJPsych Open 2020;6:e20.

Hassiotis A, Langdon P, Courtenay K, Hall I, Lloyd-Evans B, Romeo R, et al. Expanding capacity in mental health research in intellectual disabilities. BJPsych Bulletin 2020;7:1–4.

Hassiotis A, Kouroupa A, Jones R, Morant N, Courtenay K, Hall I, et al. Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol. BMJ Open 2021;11:e043358.

Data-sharing statement

All data set requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following review.

Disclaimers

This report presents independent research funded by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care.

Tables

Figures

FIGURE 10.

Scatterplot showing the bootstrapped mean differences in health and social care costs and effects (ABC-C total score) of the independent model compared with the enhanced model.

FIGURE 11.

The CEAC showing the probability that the independent model is cost-effective compared with the enhanced model: health and social care perspective, with cost-effectiveness measured by ABC-C score at 9 months. The dashed line indicates a willingness-to-pay threshold of £500.

FIGURE 12.

Scatterplot showing the bootstrapped mean differences in health and social care costs and effects (QALYs) of the independent model compared with the enhanced model.

FIGURE 13.

The CEAC showing the probability that the independent model is cost-effective compared with the enhanced model: health and social care perspective, with cost-effectiveness measured in QALYs over 9 months. The dashed lines indicate the NICE-preferred willingness-to-pay levels of £20,000–30,000.

FIGURE 14.

Scatterplot showing the bootstrapped mean differences in societal costs and effects (ABC-C total score) of the independent model compared with the enhanced model.

FIGURE 15.

The CEAC showing the probability that the independent model is cost-effective compared with the enhanced model: societal perspective, with cost-effectiveness measured by ABC-C score at 9 months. The dashed line indicates a willingness-to-pay threshold of £500.

FIGURE 16.

Scatterplot showing the bootstrapped mean differences in societal costs and effects (QALYs) of the independent model compared with the enhanced model.

FIGURE 17.

The CEAC showing the probability that the independent model is cost-effective compared with the enhanced model: societal perspective, with cost-effectiveness measured in QALYs over 9 months. The dashed lines indicate the NICE-preferred willingness-to-pay levels of £20,000–30,000.

FIGURE 18.

Sensitivity analysis: CEAC showing the probability that the independent model is cost-effective compared with enhanced model – health and social care perspective, with cost-effectiveness measured by ABC-C score at 9 months and health and social care costs adjusted. The dashed line indicates a willingness-to-pay threshold of £500.

FIGURE 19.

Sensitivity analysis: CEAC showing the probability that the independent model is cost-effective compared with the enhanced model – societal perspective, with cost-effectiveness measured by ABC-C score at 9 months and societal costs adjusted. The dashed line indicates a willingness-to-pay threshold of £500.

FIGURE 20.

Sensitivity analysis: CEAC showing the probability that the independent model is cost-effective compared with the enhanced model – health and social care perspective, with cost-effectiveness measured in QALYs at 9 months and health and social care costs adjusted. The dashed lines indicate the NICE-preferred willingness-to-pay levels of £20,000–30,000.

FIGURE 21.

Sensitivity analysis: CEAC showing the probability that the independent model is cost-effective compared with the enhanced model – societal perspective, with cost-effectiveness measured in QALYs over 9 months and societal costs adjusted. The dashed lines indicate the NICE-preferred willingness-to-pay levels of £20,000–30,000.

The intensive support teams for adults with intellectual disabilities and challenging behaviour study: qualitative ‘case study’ sites selection

Three ISTs were selected from the enhanced model.