A4.13 Not admitted to hospital when it was required
Consultant psychiatrists and other clinicians across disciplines stated that children and young people with learning disability and/or autism spectrum disorder who required hospital assessment/treatment were regularly managed in the community instead. The high threshold for admission to non-specialist units for these children and the high risks taken by families and services in avoiding admission has been described above. In addition, there were sometimes no available beds in specialist LD CAMH/ ASD inpatient units in England, or their distance was considered prohibitive by families and/or clinicians.
Of the submissions to this survey, 8 (5%) were concerning patients who remained at home with families or in their usual place of residence ( e.g. residential school). 7 (5%) concerned those who went into alternative, non-hospital provision such as residential school. These had a range of levels of learning disability and none, but half those staying at home and 5 out of 7 of those going to alternative provision had moderate learning disability. 2 of those remaining at home had interventions from an LD CAMHS Intensive Community team which ultimately prevented the need for admission.
There were some good outcomes, but at very high cost to services and families managing under difficult circumstances. For example: " Fortunately good outcome but unacceptable risks taken along the way"; "This turned out to be the best case scenario eventually available under the difficult circumstances"; "Cobbled together arrangement which worked well for this young person but may not be repeatable for others". However, despite best efforts, outcomes for patients could be poor.
Summary of issues and outcomes for those not admitted to hospital when it was required
- A large proportion had moderate learning disability
- Tended to be younger teenagers
- Those remaining at home usually had major mental illness
- All had highly challenging behaviour
Main reasons for not being admitted:
- lack of suitable age-appropriate LD CAMH/ ASD ward
- distance to travel to suitable English ward
- cross-border Mental Health Act issues
There were some good outcomes, e.g. improved mental state and doing well in residential care, or reduced medication due to behaviour management strategies.
Difficulties and poor outcomes:
- Prolonged period of illness and distress, some still ongoing, with unnecessary recurrences of illness
- High risks to patients, families and staff from self-injury, aggression and destructiveness
- Unsafe managing medication outside hospital setting
- Highly stressful and exhausting for families, may be reduction in usual support services if unable to manage
- Costly to social care services
- Difficult balancing risks of admission to unsuitable ward with risks of not admitting
- Lack of a thorough holistic multidisciplinary assessment
- Assessment/treatment took longer
- Escalating behaviour, so child or young person moved to care settings with escalating levels of security
Move to out of area residential placements:
- Distant from family
- Difficulty managing mental health assessment and treatment
- Complicated transition planning
- Sometimes later breaking down leading to hospital admission
- Limited access to education
A4.13.1 Profile and presentations of those not admitted to hospital when required
To preserve confidentiality with relatively small numbers, trends rather than statistical data are reported in this section. These patients ranged in age from 13-17 years, had a range of levels of learning disability and none, but half of all of them (and the majority of those who went to an alternative, non-hospital provision) had moderate learning disability. All had additional autism spectrum disorder. The majority of patients ideally required an LD CAMH (including secure or individualised) specialist hospital admission, although some were thought to require YPU admissions (with autism spectrum disorder expertise available) or a secure autism spectrum disorder hospital.
The majority of those remaining at home had major mental illness with severe symptoms, e.g. severe depression, bipolar disorder, catatonic symptoms and schizophrenia. Those who went to non-hospital placements had high rates of suspected or confirmed epilepsy and some had additional physical health diagnoses. All had highly challenging behaviour, particularly self-injury, aggression and destructiveness. Some also had sexualised behaviour, smearing of faeces, were refusing to eat, drink or attend to personal hygiene, isolating themselves ( e.g. refusing to come out of the house for 2 years) or were stripping. Sleep was usually highly disturbed. Some type of police involvement was common due to the severity of behaviours displayed.
A4.13.2 Reasons admissions were required:
Clinicians described their patients as needing admission for specialist age-appropriate multidisciplinary assessment and treatment, including:
1. Assessment and monitoring of mental state, particularly where major mental illness present or suspected
2. Medication management: a safe environment in which to make changes and monitor medication and its side effects
3. Review of mental health and developmental diagnoses, including learning disability and autism spectrum disorder
4. Assessment of the cause of the person's learning disability
5. Psychological/behavioural assessments and interventions, including functional analysis
6. Communication assessment and interventions
7. Sensory processing assessment and interventions
8. Assessment of impact of abuse and attachment disorders on presentation and advice on management
9. Assessment of medical co-morbidities and their role, especially epilepsy
10. Risk assessment and management advice, including forensic risk assessment
11. Crisis management, e.g. school exclusion from specialist residential school due to behaviour and family struggling to cope with behaviours at home
12. Recommendations to guide future placement, including care needs and risk management
A4.13.2 Reasons for not being admitted:
The main reasons were a lack of suitable beds and the distance to travel to suitable beds.
In some cases where a young person could have been managed on a local adult LD ward or regional YPU, there were no beds available. Others were considered to be:
- too young for the local adult LD ward;
- to have too severe a level of learning disability for the regional YPU to manage;
- unsafe to admit to YPU due to high levels of aggression;
- inappropriate to admit to local adult mental health unit due to level of learning disability and/or autism spectrum disorder.
Clinicians noted that there were no appropriate beds in Scotland for these children and young people. They attempted to assess and treat at home as the 'least restrictive option' where a suitable specialist ward was not available. They had to balance risks and decided in some cases that it was better to keep a patient at home or in the care of specialist residential care staff who knew the complex young person very well prior to their additional mental illness. This was as opposed to admitting to a non-specialist hospital setting with staff inexperienced in learning disability/autism spectrum disorder.
The distance to specialist beds in England was a problem, for example, where patients became acutely unwell in the space of a few days. Urgent admissions to NHS LD CAMH beds in England are not possible. Some children became too unwell to travel. However, clinicians noted that a specialist unit in Scotland would have been worth travelling to in some cases, but it was not thought worth the risk to travel to a non-specialist unit which would not have met their needs. Some parents chose to keep their child at home where the nearest suitable bed would have been in England at great distance.
Other reasons for lack of admission included lack of a specialist LD CAMHS psychiatrist locally to assess the patient and advise on what was required. There were also complexities about differences in the Scottish and English Mental Health Acts and cross-border arrangements which prevented admission in some cases.
A4.13.4 Interventions during time when admission was required
A4.13.4 (i) Health interventions
High levels of intervention from CAMH, LD CAMH or adult LD clinicians were given to attempt to manage these patients at home, or in alternative social care/education provisions. Despite close involvement in crisis situations, there was an inability of mental health services to provide hands-on intensive support.
Psychiatrists monitored patients' mental state, carried out medication monitoring and changes to medication. The latter was complex and time-consuming due to children and young people with learning disability having high propensity to side effects. A lot of multiagency liaison and planning was required. In some cases, community LD nurses from adult LD services visited the patient's home regularly and assessments were carried out by clinical psychologists and speech and language therapists. Where there was no specialist LD CAMH psychiatry locally, CAMH psychiatrists sometimes sought advice and joint working from adult LD psychiatrists. In other cases, CAMH psychiatrists reported that they were simply unable to give the intensity of working required for such complex patients, including the time-consuming multiagency liaison and meetings.
Young people in some residential schools also had increased visits from their general practitioner or school doctor to assist in monitoring and managing the situation. In a case where no LD CAMH psychiatry was available, a pediatrician maintained very high levels of involvement to support a temporary social care placement. They were concerned about advising on mental health issues and psychotropic medication outside their area of expertise.
Particular difficulties occurred when a child or young person was away at residential school or in a care placement out of their Health Board area. Their local CAMH services could not remain involved when they were away and if such placements broke down quickly leading to exclusion it could be difficult for them to make urgent assessments. In some cases where there was a move to an out-of-area residential school for a young person who required hospital treatment, that residential school was itself in an area with poor access to LD CAMH community services. Therefore, although the school placement was suited to manage challenging behaviour, the young person had less access to mental health support which could have helped in the assessment and management of their difficulties. Clinicians reported having to travel to such placements at great distance to provide assessment and support, with a knock-on effect on their ability to carry out their other work.
A young person needing a secure LD CAMH inpatient admission was instead admitted in crisis to a social care placement in a distant Health Board. CAMH colleagues in that Health Board helpfully followed up mental health aspects but there was no LD CAMH service and this took much longer than it would have done on a specialist hospital ward. Complex ongoing negotiations were required between clinicians and managers in both Health Boards and the local Council around assessment and treatment. This was exacerbated by the young person approaching transition to adult services, increasing the number of teams and agencies involved.
A4.13.4 (ii) Social work and education interventions
Where patients stayed at home or their usual place of residence, clinicians described close joint working with social work colleagues to attempt to assess and manage ongoing needs. Extra trained staff were put on shift in school/care settings, where there were sometimes also reduced numbers of staff changes for the individual young person. Living environments were adapted, for safety reasons and to reduce sensory stimulation, e.g. reinforced windows, conversion of bathroom to wet room. Staff who knew the young person well were often very helpful in monitoring their mental state.
Extra social care input was also put into the home, or families supported via additional respite. Families too had to adapt their living environment, e.g. by removing things that could be destroyed or living in one room.
Usually there was limited or no access to education during these times. Sometimes access to usual respite and other services was reduced during these periods as services were unable to manage the child or young person's heightened levels of distress and challenging behaviours. Therefore supports were withdrawn at times that families needed them most.
Where a child or young person could not be maintained in their home or usual place of residence, a number of social care and educational provisions were made in the absence of available hospital treatment. These included:
- Specially commissioned short-term packages of care from local respite care providers, e.g. using a high level of staff known to the patient, in a familiar physical environment, but without other children or young people present. These could impact on the capacity of providers to provide their usual respite care to other young people.
- Residential social care, extended respite care, secure care, or school placements, using the existing facility or 'bespoke' individual placement without other young people present.
High levels of staff (often 2:1) were generally required. These placements were mostly outside of the child or young person's home Health Board area and could be for lengthy periods, such as more than 1 year. Some young people were moved between a number of units across several different Health Boards, moving up to higher levels of security as behavioural problems escalated. These young people sometimes had multiple brief crisis admissions to non-specialist inpatient psychiatry wards along the way. Clinicians commented that going to a specialist LD CAMH inpatient unit or autism spectrum disorder unit could have allowed for proper assessment and management and prevented these escalations.
A teenager with learning disability, autism spectrum disorder required admission to psychiatric hospital for additional major mental illness, associated with severe self-injury, aggression, destructiveness and smearing of faeces. It was decided to keep him at his residential school where staff knew him well, rather than admit him to a non-specialist hospital. The physical environment was made more robust, extra staff put on shift and a lot of extra input was given from the local general practitioner, LD CAMH psychiatrist and school doctor. Effectively an inpatient unit was created using these health professionals and expertise from within the school. The outcome was good but would not be replicable in other settings and had a big impact on all services.
A4.13.5 Impact on patients and family
These situations resulted in high levels of distress and untreated mental illness for individuals for prolonged periods. Parents took time off work for several weeks, effectively nursing their child at home themselves, while also trying to support siblings. They had to make changes to their homes for safety reasons. It was a stressful and difficult time for many families as they tried to support very unwell and distressed children and young people, as well as manage highly challenging behaviour. They expressed frustration and anger due to lack of resources. Some families were grateful with what had been pieced together under difficult circumstances but were described as being at the 'end of their tether'.
A4.13.6 Patient safety
Patients as well as their families and/or staff were at risk from high levels of challenging behaviour, including aggression, self-injury and destructiveness in an unsafe physical environment.
There were safety issues regarding the use and monitoring of relatively high dose psychotropic medication in the community. Clinicians had to choose between their patients remaining highly distressed or risking potentially dangerous side effects in the home setting.
A patient who became rapidly unwell was managed at home "on a wing and a prayer" in a very dangerous situation. The patient was not eating and drinking and required significant doses of psychotropic medication to manage their mental illness. The psychiatrist was unable to do blood tests, ECGs, and other appropriate observations. They felt that this situation was borne out of "desperation" and unacceptably high levels of risk were managed due to lack of an appropriate LD CAMH inpatient resource. It would have been completely unmanageable had the family not been extremely competent and easy to work with and the patient not too aggressive.