Coming home: complex care needs and out of area placements 2018

Report on out of area placements and delayed discharge for people with learning disabilities and complex needs.

5 Summary of Findings

5.1 Out-of-Area Placements

5.1.1 Overall Out-of-Area Group Overview

The project found that there were 705 people out-of-area in Scotland from 30 Health and Social Care Partnerships (HSCPs); this does not include one HSCP which did not participate in the project. North & South Lanarkshire reported their data together, and Stirling/Clackmannanshire reported separately, so this is how the data are reported here. Numbers of people out-of-area for each HSCP are shown in Figure 1. As previously noted, any numbers less than five are removed.

Figure 1: Number Out-of-Area per HSCP

Figure 1: Number Out-of-Area per HSCP Characteristics of Out-of-Area Group

The out-of-area group was predominantly male, and more than one third were autistic, although one fifth of the respondents selected 'don't know', or missed this question. On the whole they are a moderate to severely learning disabled group, with less than 10% having a forensic background.

More details about characteristics of the group are described in Table 1.

Table 1: Characteristics of Out-of-Area Group

Characteristic Options Percentage
Gender Male 63
Female 37
Autistic Yes 37
No 42
Don't know/missing 21
Forensic Yes 8
No 80
Don't know/missing 12
Level of Learning Disability Mild 16
Moderate 42
Severe 25
Profound 7
Don't know/missing 10
Age 16-17 2
18-20 7
21-34 29
35-44 19
45-54 21
55-64 13
65+ 9 Length of Time Out-of-Area

Figure 2 shows the length of time out-of-area for the overall out-of-area group, with nearly half being out-of-area for more than 10 years, and almost another quarter for more than five years. This length of time out-of-area may be part of the reason for HSCPs judging that repatriation is not required for some, i.e., even though these individuals did not originally go out-of-area through choice, they have now been placed there for so long that they may be regarded as settled and established and it may therefore be judged as no longer appropriate to repatriate them.

Figure 2: Length of Time Out-of-Area

Figure 2: Length of Time Out-of-Area Reasons for Out-of-Area Placement and Need for Repatriation

The reasons for being placed out-of-area are shown in Figure 3, indicating that just over a quarter of the group had gone out-of-area through choice, and that 65% (453 people) were identified as being placed there not through choice. The main reason given for out-of-area placements was the lack of specialist services available locally.

Figure 3: Reasons for Out-of-Area Placements

Figure 3: Reasons for Out-of-Area Placements

Figure 4 shows the requirement for repatriation for those who had not been placed out-of-area through choice. As previously noted, any numbers less than five are removed. Of the 453 individuals, 109 were classed by their HSCP as requiring repatriation, although this excluded 32 individuals whose data regarding need for repatriation were missing, including all 28 from one HSCP. There were also a substantial number (80) whose status regarding the need for repatriation was not yet agreed. For clarity, data here is shown as numbers, not percentages.

Figure 4: Requirement for Repatriation in Non-Choice OOA Group

Figure 4: Requirement for Repatriation in Non-Choice OOA Group

5.1.2 Priority to Return Group Overview

109 people are considered to be priority to return, that is, those who were not placed there on the basis of their choice or their family's choice, and for whom the HSCP said repatriation was required. Numbers of those who are priority to return are shown in Figure 5. Numbers are shown per health board area, in order to protect small numbers in some HSCPs. For any health board areas with numbers less than five, these numbers are removed but the health board label is still included.

These figures are likely to be under-reported as all data are missing for one HSCP, data in relation to need for repatriation are missing for 32 individuals, and there were another 80 individuals for whom the need for repatriation was recorded as 'not yet agreed'. However, based on the data supplied, this group is judged to be the one which we can confidently label as inappropriately out-of-area, since the HSCP has specifically indicated the need for their repatriation. They are the group priority to return group on which the main analysis is focused within this report.

Figure 5: Number of Priority to Return per Health Board Area

Figure 5: Number of Priority to Return per Health Board Area Characteristics of Priority to Return Group

Characteristics for this group who are priority to return, are shown in Table 2. They were significantly more likely to be male than female, around half were autistic, and 72% had moderate or severe learning disabilities. Autism was the most common additional diagnosis; other diagnoses in addition to a learning disability were Down's syndrome, Fragile X syndrome, Prader-Willi syndrome, Smith-Magenis syndrome, and Tourette's syndrome.

More than one in five of the group had epilepsy and the main other physical health issues noted were physical disability, and visual impairment.

Around one in five were reported to have a mental health diagnosis. The most common mental health diagnoses were depression (4.6%) and anxiety (3.7%), followed by dementia, personality disorder and psychosis.

Two thirds were described as currently having challenging behaviour, indicating that addressing behavioural needs is likely to be a high priority in supporting this group appropriately.

Table 2: Characteristics of Priority to Return Group

Characteristic Options Percentage
Gender Male 72
Female 28
Autistic Yes 49
No 44
Don't know/missing 7
Forensic Yes 18
No 79
Don't know/missing 3
Level of learning disability Mild 14
Moderate 48
Severe 24
Profound 9
Don't know/missing 5
Age 16-17 6
18-20 17
21-34 34
35-44 16
45-54 16
55-64 7
65+ *
Don't know/missing *
Epilepsy Yes 22
No 65
Don't know/missing 13
Physical disability Yes 9
No 79
Don't know/missing 12
Visual impairment Yes 5
No 83
Don't know/missing 12
Mental health diagnosis Yes 21
No 69
Don't know/missing 10
Challenging behaviour Both current & historical 65
Current but not historical *
Historical but not current 16
No current or historical 17
Don't know/missing *

* Numbers removed Challenging Behaviour

In order to understand the data in relation to challenging behaviour, it may be helpful to summarise current understanding of challenging behaviour, based on research and best practice. Challenging behaviour is functional, that is, it serves a purpose for the individual and is an attempt for them to influence their world and meet their needs. These needs may be to gain interaction and attention from staff or others; it may be a way to avoid or escape an activity, situation, or environment that they find difficult, confusing or overwhelming; it may be to achieve a tangible item such as food or drink or other preferred items; it could be to address unmet sensory needs by providing sensory stimulation to calm or to stimulate; or it may to express pain and physical discomfort, perhaps in the absence of any other way to communicate this. Challenging behaviour is therefore understood as a communication from the individual and as product of the environment they live in and of the support they receive. It is not a diagnosis, and it is not innate to the individual, but rather an expression of their unmet need. Given the right combination of circumstances, we would all have challenging behaviour. More details regarding challenging behaviour are shown in Table 3.

Table 3: Challenging Behaviour, Treatment & Risk Management in PTR Group

Types of Challenging Behaviour Percentage Displaying Support for Challenging Behaviour Percentage Use
Current challenging behaviour 66 PBS input 37
Physical aggression 55 Active support 32
Verbal aggression 39 Communication strategies 50
Self-injury 31 Psychological therapies 19
Self-neglect 17 Sensory diet 6
Property destruction 40 Risk Management Percentage Use
Disruptive behaviours 28 Physical restraint 21
Non-compliance 26 Seclusion 11
Sexual challenges 18 As required medication 44
Removing clothes 11 Additional staff 41
Absconding * Environmental restriction 36
Smearing 5 Technological restriction 9
Substance misuse * Mechanical restriction *

*Numbers removed

As the data indicate that two thirds of the group were reported to have current challenging behaviour, it is worth further exploring the nature of these challenging behaviours, any support provided around behavioural needs, and the risk management strategies used to minimise risk related to these behaviours. Almost everyone reported as having current challenging behaviour also historically had challenging behaviour (only 17% are described as never having had challenging behaviour), indicating that these individuals have probably had a history of difficulties in receiving appropriate support.

The most common challenging behaviour noted was physical aggression, followed by property destruction and verbal aggression. When this is added to the fact that nearly three quarters of the group are male, most do not have a physical disability, and they are on the whole a fairly young group, the indications are that this is a very challenging group whose behaviour has the potential to cause serious harm and injury, both to themselves and to others around them, including staff and other supported individuals, and also to the environment. This is an important factor to recognise in terms of the challenge facing HSCPs in sourcing suitable social care providers for this group; and, given the longevity of challenging behaviours, this is likely to have been a long-term difficulty.

Moving on to consider the support provided for challenging behaviour, the most common support was the use of communication strategies, and given that challenging behaviour is a method of communication, it is appropriate that communication strategies would be used in support. However, only half of the group were in receipt of these, and this is concerning, given that they are on the whole a significantly learning disabled group, and therefore we would expect to see nearer 100% in receipt of communication strategies.

Just over a third were recipients of Positive Behavioural Support (PBS), and this is also concerning given PBS is regarded as the most effective and appropriate support for people with learning disabilities and challenging behaviour. PBS is a person-centred approach to challenging behaviour, and therefore involves the development of strategies specifically designed to suit that person, based on a thorough analysis and assessment of their behaviour, and developed around their particular presentation in order to meet their needs. It would therefore be best practice to see every individual with challenging behaviour in receipt of a PBS plan.

It is also worth highlighting the reported use of risk management strategies. Physical restraint was used for over a fifth, and seclusion for more than one in ten. These are figures of concern, given that restraint and seclusion are very restrictive interventions that deprive the individual of their freedom, either by forcefully holding them against their will, often carried out by several members of staff; or by locking them in a room or area against their will, where they are deprived of human contact (Mental Welfare Commission, 2014). There are considerable risks that can be associated with both these interventions, particularly restraint, which has been linked with high levels of physical injury and death (Leadbetter, 2002).

An additional concern in relation to risk management is that almost half the group were in receipt of 'as required' medication as a risk management strategy for challenging behaviour, despite the fact that only one fifth were diagnosed with a mental health condition. The current use of anti-psychotic medication is particularly concerning since a range of research, including a randomised control trial, has found that these were no more effective than placebo in reducing challenging behaviours (Tyrer et al, 2008).

A final point to note in relation to the risk management strategies for challenging behaviour is that nearly half of the returns indicated that additional staff were used to deal with challenging incidents. This has implications for the support of individuals with challenging behaviour within community settings, as it is less usual for additional staff to be readily available within ordinary social care settings, and care providers are not usually funded to make these potentially large numbers of extra staff available on a flexible basis. Placement Information for Priority to Return Group

A range of information about these individuals' current placements was explored, including whether the person had been placed as a result of a crisis. Nearly one third were placed out-of-area in crisis, which would indicate that there is a lack of support in the community to deal with crises when these arise, and that better crisis support is required. The fact that a third of the group were sent out-of-area from the family home may indicate that this crisis support is required for families, as well as for social care service providers.

In relation to the reasons given for out-of-area placement, over three quarters were placed out-of-area due to lack of specialist services locally, and another 11% due to local specialist services having no capacity, indicating a significant shortage in local services able to meet people's needs.

It is worth noting however, that despite the reported reason for a significant majority of the placements being due to the need for specialist services, nearly half the respondents indicated that the service the individual was currently in, was described as a 'general learning disability' service.

In addition, although nearly half the group were autistic, only around a quarter were reported as placed in an autism-specific service; and although 18% were described as having forensic support needs, only 5% were placed in forensic services. This may indicate that even out-of-area, there is a lack of specialist services to meet people's specific needs.

More information about placement information is shown in Table 4.

Table 4: Placement Information for Priority to Return Group

Question Options Percentage
Placed out-of-area in crisis Yes 31
No 67
Don't know/missing 2
Reason for out-of-area placement Specialist service required & none locally 77
Specialist service required & no capacity in local service 11
To prevent hospital admission *
Other 11
Placement prior to out-of-area placement Family home 33
Supported living 12
Hospital (private or NHS) 18
Care home 16
Residential school 13
Other 8
Delayed discharge prior to out-of-area Yes *
No 12
NA (as previous placement not hospital) 80
Don't know/missing *
Type of out-of-area facility Supported living 19
NHS hospital 8
Private hospital 12
Care home 46
Residential school *
Village community *
Other 7
Type of out-of-area service General learning disability 45
Autism specialist 24
Challenging behaviour specialist 7
Forensic low secure *
Forensic medium secure *
Other 17
Don't know/missing *

* Numbers removed Length of Time Out-of-Area for Priority to Return Group

In relation to length of placement, a third of this group have been out-of-area for over ten years, and another quarter between five to ten years (see Figure 6). Given that this is a group who were placed out-of-area due to lack of services, rather than due to their choice, and that these are individuals whom the HSCPs have an ambition to return, the length of these placements is especially concerning.

Figure 6: Length of Time Out-of-Area for Priority to Return Group

Figure 6: Length of Time Out-of-Area for Priority to Return Group Barriers to Repatriation

Each respondent was asked to list any barriers to repatriation, and then to select the main barrier. Figure 7 shows the main barriers to repatriation; where barriers were noted in relation to less than five individuals, these have been combined. The main barriers reported were lack of suitable accommodation or lack of skilled service providers. The accommodation required does not appear to be that requiring adaptation due to physical disabilities, as less than 10% of the group had physical disabilities. It is therefore more likely that specialist accommodation was seen as the barrier due to challenging behaviours, for example as individuals required more space or more robust housing, or larger outdoor areas, in order to meet their behavioural needs.

Figure 7: Barriers to Repatriation for Priority to Return Group

Figure 7: Barriers to Repatriation for Priority to Return Group Costs of Placements for Priority to Return Group

Information was sought on the costs of placements, and respondents were asked to indicate costs on a dropdown menu with categories increasing incrementally by 50k. Figure 8 shows the number of individuals in each category; where cost categories related to less than five individuals, these have been combined. There are 27 people whose placement was reported as costing over £200,000 per year. This figure is likely to be an underestimate as previously noted; however even taking that into account, it is clear that HSCPs are spending a significant amount on this relatively small group of individuals with learning disabilities who have the most complex needs.

Figure 8: Costs of Placement for Priority to Return Group

Figure 8: Costs of Placement for Priority to Return Group

If costs are averaged out within each category by taking a midpoint, and then multiplied by the number of people who are priority to return for each HSCP, then average yearly costs can be calculated. Spending on these placements by individual HSCPs has been added together to give an overall cost for that health board area; this is shown in Figure 9. Clearly these are significant costs for such a small number of people and give rise to the consideration that there may be a more cost effective way of supporting these individuals within current budgets.

Figure 9: Annual Costs per Health Board Area for Priority to Return Group

Figure 9: Annual Costs per Health Board Area for Priority to Return Group

5.1.3 Autistic People

Nearly 50% (n=53) of those who were priority to return, were autistic; this is in comparison to the main out-of-area group where 37% of the group was autistic. Since this autistic subgroup is such a substantial element of the priority to return group, some additional analysis was done on this sub-group. The autistic subgroup were slightly younger, more likely to be male, more likely to have a mental health diagnosis, and were more likely to have challenging behaviour, than the priority to return group; they were also more likely to be placed out-of-area in a crisis. More details regarding the autistic subgroup are shown in Table 5.

Table 5: Characteristics of the Autistic Subgroup

Characteristic Options Percentage
Gender Male 85
Female 15
Forensic Yes 19
No 75
Don't know/missing 6
Level of learning disability Mild 13
Moderate 40
Severe 30
Profound *
Don't know/missing *
Age 16-17 *
18-20 21
21-34 42
35-44 15
45-54 13
65+ *
Epilepsy Yes 25
No 64
Don't know/missing 11
Physical disability Yes *
No 85
Don't know/missing *
Visual impairment Yes *
No 87
Don't know/missing *
Mental health diagnosis Yes 33
No 59
Don't know/missing 8
Challenging behaviour Both current & historical 78
Historical but not current 13
No current or historical *
Don't know/missing *
Placed out-of-area in crisis Yes 66
No 32
Don't know/missing 2
Placement prior to out-of-area placement Family home 30
Supported living 15
Hospital (private or NHS) 19
Care home *
Residential school 17
Village community *
Other 11

* Numbers removed

Cost of placement was also considered for this subgroup and more than 40% of the group were in placements costing more than £200,000 per year. This is in comparison to the priority to return group, where less than a quarter cost over £200,000, and in the whole out-of-area group where only 6% had placements in this category, thus indicating a significant link between autism and expensive packages of support. More details re costs of placement in the autistic subgroup are in Figure 10; as above, where cost categories related to less than five individuals, these categories have been combined. Figures here are actual numbers, not percentages.

Figure 10: Costs of Placement in Autistic Subgroup

Figure 10: Costs of Placement in Autistic Subgroup

5.1.4 People Placed Out of Scotland

The overall out-of-area data reported 79 people placed out of Scotland (in England and Wales), and of these, 47 individuals were placed due to lack of local services, rather than due to their or their family's choice. However, only 17 of these were noted as requiring repatriation, so some closer analysis took place for this small group. Since this is such a small group, some caution must be used in interpretation of the data and any trends should not be overstated; however there are a number of factors worth noting.

More than half of the out of Scotland group were autistic (n=10) and 83% (n=14) had challenging behaviour, indicating that these two characteristics are significant factors for being placed out of country. As regards management of challenging behaviour, 71% were in receipt of required medication, 18% of seclusion, 35% of physical restraint, and 59% were managed by the use of additional staff; all substantially higher than in the main priority to return group. The concerns noted about all of these types of management of challenging behaviour are clearly also relevant here. However, this group were also more likely to be in receipt of PBS, perhaps a reflection of the more extensive use of PBS in England than in Scotland.

In relation to cost comparison, eight of them (47%) were in placements costing over £200,000, indicating that those placed out of Scotland are also the most expensive group. Although they are a small group, they are therefore significant due to these high costs, and consideration must be given as to how they can be more appropriately supported within Scotland.

5.2 Delayed Discharge

5.2.1 Overview

Data returned indicated 67 people were delayed discharge as of the specified date of 31st January 2017. This does not include data from one large HSCP, and therefore figures are potentially higher.

The Inpatient Census carried out by the Scottish Government based on the date of 30th March, 2017, found 66 people with learning disabilities reported as delayed discharge, and the Mental Welfare Commission (MWC) in their report into delayed discharge, No Through Road, found 58 people delayed (MWC, 2016). The MWC have recently reported an increase in delayed discharge. These data were collected at different time periods and using different methods, which may account for the differences in figures.

5.2.2 Characteristics of Delayed Discharge Group

Characteristics for the delayed discharge group are shown in Table 5. As with the out-of-area group, the delayed discharge group were also primarily male; however, they were more likely to have a mild learning disability and were less likely to be autistic, with just over a third being autistic. Other than autism, only one person was reported as having an additional main diagnosis (Down's syndrome). Around one in five of the group had epilepsy and the main other physical health issues noted were physical disability, and visual impairment.

The delayed discharge group were significantly more likely to have a mental health diagnosis than the priority to return group, as even with one in five not reporting on this, there were still 40% of the group who were reported to have mental health difficulties. The most common mental health diagnoses were bipolar disorder, anxiety, depression and schizophrenia. Nearly three quarters were also described as currently having challenging behaviour, so this combined with mental health difficulties, indicate that this would be a very challenging group to support, potentially a factor in their discharge being delayed.

Table 6: Characteristics of Delayed Discharge Group

Characteristic Options Percentage
Gender Male 66
Female 34
Autistic Yes 36
No 54
Don't know/missing 10
Forensic Yes 21
No 63
Don't know/missing 16
Level of learning disability Mild 24
Moderate 40
Severe 31
Profound *
Don't know/missing *
Age 18-20 *
21-34 37
35-44 22
45-54 24
55-64 13
65+ *
Epilepsy Yes 18
No 66
Don't know/missing 6
Physical disability Yes *
No 81
Don't know/missing *
Visual impairment Yes 8
No 78
Don't know/missing 14
Mental health diagnosis Yes 40
No 39
Don't know/missing 21
Bipolar disorder 10
Anxiety 9
Depression 8
Schizophrenia 8
Challenging behaviour Both current & historical 73
Historical but not current 10
No current or historical *
Don't know/missing *

* Numbers removed

5.2.3 Challenging Behaviour

Challenging behaviour was a significant factor for the delayed discharge group also and more information regarding types of challenging behaviour, treatment, and risk management are shown in Table 6. This group had higher rates of challenging behaviour, with nearly three quarters having current challenging behaviour (only 5% are described as never having had challenging behaviour), and for over two thirds their challenging behaviour included physical aggression. Those in hospital were more likely to be in receipt of PBS, perhaps a reflection of the fact that health services are generally using PBS more than in social care. Similar to the priority to return group, those in the delayed discharge group had high levels of risk management strategies, although use of both physical restraint and as required medication were substantially higher. However, there was less reported use of seclusion and of additional staff, than in the out-of-area group.

Table 7: Challenging Behaviour, Treatment & Risk Management DD Group

Types of Challenging Behaviour Percentage Displaying Support for Challenging Behaviour Percentage Use
Current challenging behaviour 73 PBS input 43
Physical aggression 67 Active support 24
Verbal aggression 49 Communication strategies 40
Self-injury 31 Psychological therapies 24
Self-neglect 9 Sensory diet *
Property destruction 28 Risk Management Percentage Use
Disruptive behaviours 28 Physical restraint 37
Non-compliance 31 Seclusion 10
Sexual challenges 21 As required medication 63
Removing clothes * Additional staff 18
Absconding * Environmental restriction 43
Smearing * Technological restriction *
Substance misuse 0 Mechanical restriction *

* Numbers removed

5.2.4 Reason for Admission

Those completing the data collection return were asked for more information about individuals' admission to hospital and some details about their placements. It is worth noting that this part of the data collection was less well completed, with many questions missing from around 20% of respondents; this was mainly due to one HSCP return which had a large number of delayed individuals, but supplied very little other than basic information about those individuals. Obviously, these gaps have impacted the validity of some of the figures reported.

Respondents were asked to indicate the reason for the individuals being admitted to hospital and asked to choose from a dropdown list; the results from this are shown in Figure 11. More than half the group were identified as having been admitted to hospital due to challenging behaviour, and this is clearly significant, even with over a quarter of the data missing. Along with the data reported in relation to out-of-area placements, this confirms that community provision for people with learning disabilities and challenging behaviours is not meeting the needs of this client group, and is the primary reason for people either going out-of-area or into hospital.

Also worth noting in terms of reasons for admission is the fact that less than five people were admitted for a mental health assessment, despite the fact that this should be the primary reason for admission to an assessment and treatment unit.

Figure 11: Reason for Admission

Figure 11: Reason for Admission

* Mental health assessment; out-of-area return; family reasons; court ordered

5.2.5 Placement Information

Information was sought regarding individuals' previous placement, and it is noticeable that a smaller percentage came from the family home in comparison to those who went out-of-area from the family home. More than a third of the delayed discharge group were admitted to hospital from a supported living environment and this may indicate that for some individuals with high levels of challenging behaviour such as this group have, a supported living environment can be fragile and vulnerable to service breakdown leading to hospital admission. However, it is also important to note that many people with complex needs and challenging behaviour live successfully within supported living settings, and that successful services are related to a number of factors, rather than just the model.

With regard to the availability of individuals' previous placements, the vast majority were no longer available; this is concerning as there is some evidence to indicate that when placements are lost, the length of stay in hospital is likely to be significantly extended.

A third of the individuals were admitted as a repeat admission, demonstrating that this is a group who have had long-term difficulties in receiving appropriate support. Given the fact that over 80% of the group have historically had challenging behaviour and that research tells us that challenging behaviour tends to be an enduring issue for many, then repeat admission is perhaps not surprising. More information about previous placements is shown in Table 7.

Table 8: Placement Information for Delayed Discharge Group

Question Options Percentage
Placement prior to admission Family home 16
Supported living 34
NHS Hospital 10
Private hospital *
Care home *
Other 9
Don't know/missing 20
Availability of previous placement Still available *
No longer available 70
Don't know/missing *
Repeat admission Yes 33
No 49
Don't know/missing 18

* Numbers removed

5.2.6 Length of Admission

The length of time that people had been in hospital was explored with some concerning results; see Figure 12. More than 22% had been in hospital for more than ten years, and another 9% for five to ten years. The loss of opportunity for an ordinary life that these figures represent, is very concerning to all who have an interest in the wellbeing of people with learning disabilities.

Figure 12: Length of Admission for Delayed Discharge Group

Figure 12: Length of Admission for Delayed Discharge Group

5.2.7 Length of Delay

This question was particularly poorly completed with nearly 50% of respondents supplying no information. For those who did respond this was a free text answer, so that they could state the number of days delayed; however for ease of comparison and to protect small numbers, responses have been grouped into categories and the numbers of individuals in each category are shown in Figure 13. It should be noted that some of these in the '1 year +' category had been delayed substantially longer than one year, with a small number delayed more than five years.

Figure 13: Length of Delay

Figure 13: Length of Delay

5.2.8 Delay Codes and Discharge Plans

Plans regarding discharge for those that were delayed are shown in Table 8. Over half the group had active plans for discharge, and the main discharge facility was to a supported living setting.

Delay codes were not supplied for nearly 40% of the returns, making any analysis difficult. However, for those that did answer this question, around a third were a code 100. The NHS Scotland Delayed Definitions Manual (2016) states in relation to code 100:

"Some patients destined to undergo a change in care setting should not be classified as delayed discharges and can be categorised as:

  • Long-term hospital inpatients whose medical status has changed over a prolonged period of treatment and discharge planning such that their care needs can now be properly met in non-hospital settings. These might be Mental Health patients or Hospital Based Complex Clinical Care patients who have been reassessed as no longer requiring such care.
  • Patients awaiting a 'reprovisioning' programme where there is a formal (funded) agreement between the relevant health and/or social work agencies.

Information on all such patients should be recorded as code 100. It is acknowledged that while such patients may be classed as 'ready for discharge' the standard discharge planning processes and timescales are not appropriate. Gathering information on code 100 patients should mean that all patients for whom hospital is no longer the optimum setting can be accounted for."

Table 9: Discharge Plans

Question Options Percentage
Discharge plans Active plan for discharge 51
No current plans for discharge 30
Missing 19
Discharge to Supported living 46
Care home *
Other *
NA, no plans 25
Missing 19

* Numbers removed

5.2.9 Barriers to Discharge

The main barriers to discharge were reported as lack of accommodation, followed by lack of suitable service providers; these are similar findings to the priority to return group, indicating that both these factors are issues for the two groups. More information is shown in Figure 14.

Figure 14: Barriers to Discharge

Figure 14: Barriers to Discharge

* Legal issues; funding issues; geographical issues

5.2.10 Costs for Delayed Discharge Group

This question was poorly completed with over a quarter of respondents not providing the information requested. This may indicate a lack of information regarding health-related costs (as most data was provided by social care staff), or it may relate to the difficulty in identifying specific bed-costs within NHS resources. For those that did reply, information can be seen in Figure 15, showing that on the basis of this information there were 10 people whose placement was reported as costing over £150,000 per year.

Figure 15: Costs of Placement Delayed Discharge Group

Figure 15: Costs of Placement Delayed Discharge Group

5.3 Feedback from Stakeholders

5.3.1 Feedback from Families

As previously noted, some people can be described as out-of-area appropriately, for example, it may be seen as a lifestyle choice by them or their family members. Both Garvald and Camphill communities identified as providing a specific way of life for the individuals who lived there and family members were keen to stress the importance of these resources. These communities received high levels of support from family carers for the fact that they offered a lifestyle that was viewed as secure, independent and high quality, with a rural aspect and an ethos of contribution from all, regardless of level of learning disability. Parents spoke passionately about the sense of community and the opportunity for their family member to be part of something and not to feel isolated. They described their family members as complex and taking a long time to get to know and that the secure and family-orientated setting was ideal for meeting their complex needs, providing a safe environment with reassuring routines; a calm pace of life with a range of opportunities, an intentional community. Staff also spoke highly of the experience of working there, and of it being a vocation more than a job.

Some families also voiced support for residential care as these placements were seen to both be safer for their family member, and to provide a sense of community for them. The fear of their loved one becoming isolated was a strong message from these families.

Family carers who had formally raised concerns in a variety of ways about the support their family member received, told stories of lack of local support for their son or daughter with very challenging and complex needs; this included delays in being able to access services for their family members, so that families were left to struggle on in difficult circumstances. Some described being offered inappropriate services which they felt would not meet their needs, or which were far away from the family home, making it very difficult to maintain family links and to regularly visit their loved one. This caused stress and worry for the families concerned. All expressed concerns about the lack of support in times of crisis, some citing the fact that the police had to be involved when their son or daughter had incidents of severe challenging behaviour; others referring to the fact their loved one was admitted to a psychiatric unit as there were no suitable learning disability resources available.

Many carers expressed concern about the skills of social care providers to meet their family member's needs and told stories of service breakdown within community social care provision. This included the need to understand the triggers or antecedents that led to incidents of challenging behaviours, so that support for the individual can be person-centred and that environmental adjustments can be made in order to minimise the likelihood of challenges occurring. They also referred to the need to use appropriate communication strategies, to communicate in a way that worked for their family member, as many of the individuals had very limited or no verbal communication and depended on the use of alternative and augmentative communication methods, such as visual communication via systems such as Board Maker, social stories, or the use of communication passports.

Some family carers also expressed concerns about the lack of skills in school settings in relation to managing challenging behaviour, and in particular around the use of restraint and seclusion in a school setting.

5.3.2 Feedback from Health and Social Care Partnerships

All HSCPs consulted with recognised that there is a concern nationally in how we support people with learning disabilities and complex needs who challenge services. Although some HSCPs were further on in their thinking than others, and it is noted that some HSCPs are providing good local support to this group, all agreed that they would like to find better solutions in this area. Smaller and more isolated HSCPs discussed the option of cross-border commissioning to provide regional solutions, and many HSCPs referred to the need for a regional resource, particularly to avoid people being sent to England when there were no appropriate Scottish resources. However, there were also some concerns about the location of any regional resource in relation to which HSCP takes the financial risk. Ordinary residence was also noted as an issue in this context.

All HSCPs consulted also highlighted recruitment and retention in social care, and it was identified that pay and conditions are an issue particularly for third sector organisations who struggle to compete with pay scales for council social care staff, or for the conditions available to health care staff. Others highlighted the recruitment crisis across both health and social care, particularly in terms of staff working with the most challenging individuals, and there was general consensus that the most challenging work should attract better pay. It was acknowledged that working with people with complex needs and challenging behaviour is a very skilled job with a need for consistency while being able to respond flexibly; the ability to work proactively, to recognise triggers, and to think ahead; and the need to be self-reflective and maintain a healthy balance. The need to attract more staff to social care, and for social care to be seen as a positive career choice was highlighted by many.

Models of support were also raised by some HSCPs, with a concern that getting environments right was a major factor in successful services. The need for a more national approach to principles of good environmental design for people with complex needs, particularly those with autism, was highlighted by some. There was a recognition that environments need to meet the person's need for space, stimulation, activity, outdoor access, contact with others, routine, and availability of staff. In particular for autistic individuals, attention must be paid to meeting any specific sensory needs.

Modular build options have been explored by some HSCPs and by some service providers to good effect, and these have the capacity to provide flexible, bespoke, and robust individualised accommodation for people with the most challenging behaviours.

Some HSCPs have focused recently on building core and cluster models, which have the advantage of providing individualised support, but within the context of back-up support available as required. This can be useful in terms of retaining staff, as staff working where they are isolated and work primarily on their own, with an individual whose behaviours can be challenging, can impact staff confidence, morale and ultimately increase turnover.

Rural authorities reported some particular challenges, particularly around economies of scale and also lack of local resources. This can also make it challenging to maintain contact with individuals who are out-of-area, as the distances can result in difficulty in keeping in contact with the key stakeholders locally, and therefore more fractured relationships within the care team responsible for the individual's support.

Some HSCPs reported that families prefer 'specialist' organisations, for example those with autism badging, and that this can be a factor in the use of out-of-area placements, as families create a demand for these services. Some reported difficulties with specialist providers who offer out-of-area placements for those with complex needs and challenging behaviours and/or autism, but who charge very high rates without the HSCP receiving much information about the service being provided or having much say in the model of support. However, use of specialist and private providers continues, often because HSCPs feel that more local or mainstream providers cannot provide the specialist support, including the use of physical restraint if required. In addition, most social care providers do not have spare capacity, so if a placement is needed in an emergency, then private providers or specialist residential services are more likely to be used.

In relation to admission to hospital, it was acknowledged that it happens because the social care provider or family have often struggled for a long time and are worn out, and can no longer cope, and it is a way of giving them a break. The lack of community crisis support means that there is often no alternative to hospital admission once situations have become very challenging.

HSCPs reported that when people come into hospital for appropriate reasons, i.e. treatment for their mental health, then this was seen to be a positive use of assessment and treatment units. When people were admitted on the basis of their challenging behaviour then they were likely to have poorer outcomes. This included losing their placements, which was found to be associated with a significantly longer stay in hospital than those whose placements were retained. It was also noted that people are sometimes admitted because the mix of individuals does not work, or because the accommodation is not suitable

Some HSCPs spoke of the lack of a link between children's and adult services. This may be exacerbated in some local authorities where children's services are not integrated with health and social care.

Issues around health and social care integration were highlighted and the fact that integration is still in its early days, particularly in relation to budgets; therefore financial disincentives to discharge people from hospital may continue.

5.3.3 Feedback from Social Care Providers

Many similar issues were highlighted by social care providers; recruitment and retention were noted as issues by most social care providers, and within complex services, providers noted that they would be less likely to be able to use volunteers or students on placement in order to augment support. People with complex needs are also less likely to rely on natural supports as part of their care package, and for those whose communication is limited and whose behaviours can be challenging, it is clearly more difficult to build up social networks and circles of support.

Some providers spoke positively about Community Learning Disability Teams, and the fact that these could be a source of advice, particularly in relation to health issues. However, providers also spoke of the lack of practical crisis support when things are difficult and services become at risk of breakdown. This appears to involve the need for direct support from skilled staff who can provide cover on shifts and who will be resilient in managing challenging behaviours.

Many providers raised concerns about the commissioning process for people with complex needs and that this sometimes did not appear to be as person-centred and needs-led as we would expect. Specifically, there were examples of poor combinations of individuals living together, unsuitable housing selected for individuals, and at times, a rushed transition for those who may require a longer transition due to the complexity of their needs. Concerns were also raised in relation to services for individuals with very complex needs being commissioned on the same financial basis as for individuals with a need for more mainstream learning disability provision.

Providers also spoke about their success stories and what they had learned from these, and in general they all expressed willingness to rise to the challenge, to work with more people with complex needs and to support solutions for this group across the sector. There was an interest in getting more involved with the development of services, and to provide advice and support to the commissioning process based on the experience of providing services. Some providers had housing solutions, whether that be the offer to buy or build accommodation as required, or some providers who were also housing associations had access to their own housing stock.

5.4 Positive Behavioural Support Findings

The survey found limited evidence for use of PBS in social care settings with only two of the social care organisations who responded having a specific PBS team; other providers referred to either external health professionals supporting them with PBS, or they saw this as part of the role of their physical intervention trainers. This indicates a lack of internal expertise, as those who are primarily physical intervention trainers are unlikely to have the skills and expertise required to carry out functional assessment, which is the starting point for any PBS support plan. Dependence on external expertise is also a concern, as this may mean lack of ready access to PBS specialist input when required, and it almost certainly means no availability for direct practical PBS input on a regular basis.

Use of PBS was reportedly greater in inpatient health services, with the roll-out of Improving Practice (NES, 2014) appearing to be the most likely source of PBS training and knowledge for health services. This is a useful resource which clearly many people have found helpful in beginning their acquaintance with PBS; however it is not a detailed training for PBS specialist input, and therefore needs to be augmented with more in-depth PBS training and qualifications. The fact that PBS training was more widely available in health settings, is perhaps a factor in why so many social care settings have struggled to successfully provide services to individuals with significantly challenging behaviours.

Those who did have PBS qualifications were most likely to have achieved those either via the Masters programme from Tizard at the University of Kent, or via the online certificate from ABM University in Wales. On the whole, it is clear that there is a lack of PBS expertise within Scotland, in particular the lack of any university-based programme to supply accredited training at a range of levels for health and social care staff working with people with complex needs.

Providers noted that access to PBS training can be very expensive, and this is a factor that also needs addressed, if Scotland is to achieve a PBS-skilled workforce to support people with complex needs.

With regards the implementation of PBS, there was limited evidence of the whole-systems approach on which PBS is based. This would require evidence of supported implementation via mentoring, practice leadership and monitoring in the workplace. Developing PBS expertise is an ongoing process of formal learning and supported implementation; practice-based mentoring by a more experienced practitioner is therefore key. There was limited evidence of this in the responses submitted.


Email: Jacqueline Campbell

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