A4.5 Pre-admission issues
Summary of pre-admission issues
Very high threshold for admission, much higher than for adults with learning disability or for children and young people without learning disability. Admissions were usually undertaken only in absolute crisis, when the risk of staying in the community exceeded the risk of an inappropriate ward. Children and young people, therefore, endured long periods of untreated illness and distress at home and families were exhausted from caring for them and managing challenging behaviour.
There was a lack of community mental health services to support, with 'cobbled-together' arrangements and gaps being filled by other services. Risks were unacceptably high in the community from aggression, self-injury, destructiveness, use of high levels of psychotropic medication without the ability to safely monitor, and from families having to use unsafe physical restraint.
There were particular difficulties for vulnerable patients, including those with learning disability and more complex needs, and looked-after children and young people in out-of-area placements.
Families had to make difficult decisions. They were fearful of admission, especially when no appropriate unit and/or they had had previous negative experiences. It was difficult to hand over care, especially to staff inexperienced in working with children and young people and/or those with learning disability.
Situations impacted on clinicians and other patients. Each admission was a time-consuming and stressful 'special arrangement', with knock-on effect on the care of other patients and on the personal life of clinicians.
A4.5.1 Time taken from identification of need for admission to admission
This information was only given for 48 of the admissions in the survey out of 106. Therefore numbers were small for any meaningful comparison between patient groups.
- 24 patients admitted immediately (<24 hours)
- 11 admitted 24 hours to 1 week after need for admission identified
- 5 admitted 1 to 4 weeks after need identified
- 8 were admitted more than 4 weeks after need identified, some more than 3 months after.
A4.5.2 Positive pre-admission experiences
Sometimes a wait of several weeks was acceptable where there was a planned admission with time needed to make appropriate arrangements. Also, teams delayed some admissions, attempting other strategies in the community first, including intensive treatment services ( ITS) where available. Families often drew on their extended family and friends to increase natural support to try and prevent admission.
Even when there was not an appropriate mental health unit available, there were a couple of examples of where admissions were relatively straightforward. For example, a young teenager was admitted to a pediatric ward in a crisis, because the teenager was well known to the ward and neurology team. Also, an older teenager was admitted to an adult LD ward because the adult LD community team was involved and a bed was available. The National Child Psychiatry Inpatient Unit was seen as responsive to requests for support and most admissions there were relatively straightforward to arrange.
A4.5.3 Pre-admission issues where an existing 'generic' young person's mental health inpatient unit ( YPU) was required
Securing a bed for any young person in an age appropriate mental health bed could take time, with regional YPUs frequently full. There were examples of young people requiring an YPU bed having to wait days or weeks, either at home or on an adult mental health ward. Difficult decisions could be required from families regarding whether a young person ( e.g. with autism spectrum disorder and mild or no learning disability) would have been better in a local adult mental health ward or a more distant regional YPU. Local general adult psychiatry consultants were generally supportive and helpful where young people had to be admitted to adult mental health units.
A4.5.4 Pre-admission issues where a specialist LD CAMH inpatient unit was required
The most major difficulties described in this section were experienced by patients, families and services in the pre-admission period where a specialist LD CAMH inpatient unit, secure LD CAMH inpatient unit or non- LD ASD unit was required. Information is summarised from interviews with clinicians about 27 patients, all except one of whom had learning disability. 6 of these had mild learning disability and required secure LD CAMH inpatient provision. 6 had moderate or severe/profound learning disability (all with co-morbid autism spectrum disorder) and required a robust, individualised autism spectrum disorder-specific LD CAMH inpatient setting. <5 had autism spectrum disorder without learning disability and required a secure autism spectrum disorder adolescent mental health inpatient unit. Clinicians managing these situations in the community were from a variety of services (adult LD, mainstream CAMHS, Paediatrics and LD CAMHS) as specialist LD CAMHS community provision is very variable across the country.
The impact of a lack of any suitable inpatient mental health beds for children and young people with more severe levels of learning disability/complexity was reported as far reaching. Admissions were almost never at the appropriate time, young people and their families frequently endured weeks of distress at home as the thresholds for admission to inappropriate units were so high. Families of children and young people with learning disability tended to be used to dealing with very high levels of need. This meant that when they were no longer able to cope, the situation being presented was often at a critical level. Admissions were therefore almost always in crisis rather than planned but, despite this, could take considerable time to arrange, each admission being a 'special arrangement'.
The only option for admitting one young person with learning disability, autism spectrum disorder and probable major mental illness with an extreme presentation was an adult IPCU (Intensive Psychiatric Care Unit). As this was so clearly inappropriate he was only admitted when things became completely unmanageable.
A4.5.5 Trying to avoid admission and managing while waiting for a bed
In cases where children and young people with learning disability were eventually admitted to non-specialist units, such as adult mental health, adult LD and YPUs, particularly intensive input was given in the lead-up, in an attempt to prevent admission. Thresholds for admission to non-specialist units were very high, so children and young people with learning disability were almost always admitted much later and at much higher levels of need than children and young people without learning disability, or adults with learning disability. The levels of risk to the young people and their families were usually "way above acceptable levels" by this stage. One adult LD Psychiatrist expressed his concern that, due to a lack of an appropriate inpatient facility, children and young people with learning disability were almost never admitted for clinical reasons, but only when the risk to them of staying in the community exceeded the risks to them of being in an adult ward.
In one case, multiple attendances at A&E (Accident & Emergency Department) occurred while waiting for a bed, with family desperate for 'time out'. A&E staff were supportive, but there were significant problems due to destructive behaviour and the young person grabbing things off other patients.
A4.5.5 (i) Response from out-patient teams
Clinicians described teams 'pulling out all the stops', knowing patients would be better off at home with familiar people in their usual routines and environment, than in a non-specialist setting. Adult LD services frequently felt pressure to be drawn into managing complex situations regarding under 18's, where they didn't have the remit, time or expertise to do so, describing trying to make the best out of a difficult situation for individuals. Clinicians in some areas felt there was a lack of 'ownership' of these children and young people by CAMHS services, and a lack of support from service managers, due in part to a lack of historical involvement with children and young people with learning disability.
A4.5.5 (ii) Intensive community treatment services
Only one Health Board (Lothian) has an intensive LD CAMH service. Intensive 'mainstream' CAMHS services, when present, often exclude or lack skills to work with those with learning disability. Despite best efforts, very small LD CAMH services (where these even exist) struggled to provide anything approaching an intensive community response. For example, a patient who should have been seen at least weekly by a psychiatrist with additional nursing visits between could only be seen every 2-3 weeks by a psychiatrist, with phone calls in between. Clinicians described being therefore unable to safely monitor and manage the required medication at home. They had to balance the risks and distress of inadequately managed symptoms with the risks of using relatively high doses of psychotropic medication without safe monitoring.
Where an LD CAMH intensive service was available, this did not prevent hospital admission in all cases. A situation was described where school could not manage the young person's behaviour, despite creation of a 'bespoke' educational resource. When this and a large package of specialist respite broke down, he was just at home and the family could not manage. Despite adult LD nurses working in the family home for 3-4 months, the situation became unsustainable and the level and intensity of challenging behaviour meant that a hospital placement was unavoidable.
A4.5.5 (iii) Paediatric and social care services
Pediatricians were sometimes left managing psychiatric/behavioural presentations in children and young people with learning disability in the community and on pediatric wards where LD CAMH community provision was limited. For example, in one Health Board, CAMH psychiatrists did not see children and young people with learning disability and learning disability psychiatrists did not see children and young people, leaving a gap which had to be managed by pediatricians. Considerable time, energy and stress was involved in prolonged debates about who should take responsibility.
One child remained in A&E overnight while the pediatric ward decided whether they could manage his disturbed behaviour, in the absence of a mental health alternative.
The added physical, neurodevelopmental and mental health complexities of children and young people with learning disability mean that psychiatrists have to work closely with pediatricians to assess physical and mental health contributors to severely disturbed behaviours. A psychiatrist described spending up to half of a working week on a pediatric ward to support an admission where physical causes of behavioural problems were being assessed prior to transfer to a psychiatry ward. Mental health nurses were also 'drafted in' to support.
Social work and education departments often had to put in considerable resources to support patients who should have been in hospital, to the detriment of services to other children.
One patient, who waited 12 weeks for a secure LD CAMHS bed , was only manageable because he was in a secure care unit where staff tolerated his behaviour as he was so obviously mentally unwell. Staff were described as 'superb', particularly as they were not experienced in managing young people with learning disability.
A patient who waited more than 6 months for a bed in an LD CAMHS unit in England had to be managed between home and a local respite unit, with the local pediatric ward and regional YPU being considered unsuitable due to her severe learning disability and autism spectrum disorder. Respite staff struggled to manage, even with 3:1 staffing levels. There were teams of staff at respite and school dedicated just to her, at high cost and at the detriment of work with other children.
A4.5.6 Looked after children and out of area placements
Particularly complex situations arose when children and young people requiring admission were 'looked after and accommodated' outside their home Health Board. Some patients had extremely prolonged and complex journeys over months or years through a number of social care, secure units, residential schools and various inpatient units prior to eventual admission. Delays of up to 2 years were described while referrals were made and considered. A case was described where the clinician felt that clear treatment plans with admission where required to an appropriate Scottish inpatient unit would have prevented numerous crisis admissions and months/years of uncertainty.
The availability and location of residential schools set up for children and young people with severe/complex needs meant that some children and young people with learning disability (and usually autism spectrum disorder) were accommodated out of their Health Board area. Specialist mental health input to such schools is variable and they may be in Health Boards with underdeveloped or no specialist LD CAMH services. When mental health issues arose for these children, and/or behaviours escalated to a level that the school could not manage, extremely difficult situations arose with, for example, young people being admitted in crisis to adult mental health or adult LD wards local to the school but away from their Health Board area. As well as difficulties of geographical distance from family and home area professionals, there were boundary issues about who takes "ownership" of the patient's situation. Professionals and families found themselves involved in very time consuming and stressful battles over service provision, particularly around the time of transition to adult services (social and health). For patients in care where there was no ongoing family involvement, there was some concern from psychiatrists that no-one was advocating effectively for their needs.
There was difficulty accessing a forensic LD CAMH assessment for a young person in secure residential care away from his home Health Board. A lack of expertise in both Health Boards was complicated by CAMH psychiatry cover coming from Health Board of the residential home but financial responsibility coming from the home Health Board. An adult LD forensic psychiatrist carried out an assessment, recommending inpatient care in a medium secure LD CAMH unit in England, but lack of action from the home Health Board meant that the referral process took many months. Local CAMHS closed the case and involvement from home Health Board clinicians could not be intensive due to distance. A major crisis led to urgent admission to a highly inappropriate adult setting, pending transfer to the previously recommended medium secure adolescent setting.
A patient with learning disability, autism spectrum disorder and a highly complex and challenging presentation was accommodated in a specialist residential school outside of their Health Board of residence. With no local LD CAMH service in the Health Board in which the school was located, a psychiatrist from their home Health Board had been to give an opinion 2 years before the admission. However, no local follow up or support for implementation had been possible and difficulties escalated until admission was unavoidable and had to be arranged to an inappropriate Adult LD hospital.
A4.5.7 Impact of pre-admission difficulties on children, young people and their families
Where children and young people had to remain at home or in care provision for weeks or even months while an appropriate (or even an inappropriate) hospital bed was found, this was an extremely stressful and distressing time for them and their families. There were high levels of distress, agitation, self-injury, aggression, destructiveness and sleep disturbance, causing injuries and high risk of serious harm to children and young people, their parents and siblings. Families sometimes had to use unsafe physical restraints to attempt to manage the risks. In a number of cases, respite provision and/or school placement had already broken down due to the severely challenging behaviour so there was a reduction of usual supports.
A teenager with learning disability, complex physical and mental health problems was unwell for weeks in the community, with no available intensive home treatment provision and no suitable inpatient unit to admit to. In the days leading up to an emergency admission, she was almost continually distressed night and day, often stripped naked, screaming, sleeping as little as 3 hours a night and pulling everything apart in the house. Her family were exhausted and distressed. Psychiatric medication was already at higher doses than could be safely monitored and managed outside a hospital setting.
The full impact on children and young people themselves of these extended periods of distress, untreated mental illness, uncertainty and debate about who should help them and where they should go could not be directly ascertained from this study. The severity of learning disability of many would have made it difficult for them to verbalise this. However, one more verbal young man with mild learning disability, whose psychiatrist had spent weeks persuading him to go for assessment at an YPU, felt hugely rejected when they said they could not admit him.
Some families found it intrusive when clinicians had to carry out frequent home visits to safely monitor a child or young person waiting for admission. The preadmission time was even more difficult when there were young siblings, parental mental health issues and marital problems. Parents may have had negative experiences of hospital or care themselves, which made them more fearful of hospital admission. Where there were additional complex family issues with high expressed emotions or child protection concerns, this added to difficulties in managing the situation. Families had often managed very challenging behaviour over many years at home and it could be difficult for them and professionals to decide when to draw the line. So when a difficult decision to admit had been made, to then have to wait for a bed was very hard.
As young people were often admitted in crisis when families were no longer able to cope, the parents struggled with the decision to admit their child to hospital. This was much harder when they had to admit them to an inappropriate adult ward, when they were aware that staff were not used to working with children, and fellow patients may include adults with aggression and who have committed sexual offences. Parents of children with complex and serious physical health needs who had provided very high levels of care all their lives found it particularly difficult to hand over their care. They often had spent years developing relationships and trust with education and respite staff but were having to effectively trust strangers with their child who was unable to communicate their own needs.