A4.12 Admissions to specialist mental health inpatient units in England
There were a total of 17 patients admitted to mental health inpatient units in England. 9 were admitted to LD CAMH inpatient units, including secure LD CAMH inpatient units. Other units included Secure Adolescent mental health inpatient units and autism spectrum disorder -specific inpatient units.
All patients admitted to mental health inpatient units in England had autism spectrum disorder. The number of patients of each level of learning disability admitted to units in England was as follows:
- No learning disability: 5
- Mild learning disability: 5
- Moderate learning disability: (<5)
- Severe/profound learning disability: (<5)
Summary of issues related to admissions to specialist inpatient units in England
Positive experiences and outcomes
- Comprehensive age and learning disability/autism spectrum disorder specific multidisciplinary assessment giving better understanding of patient's needs
- Significant improvements in mental health, anxiety levels and well-being
- Improved sleep pattern for patient and therefore family when discharged home
- Effective behavioural, communication and sensory interventions allowing reduction of medication for anxiety/agitation
- Safe 'autism friendly' environment with age and developmentally appropriate activities, exercise, education and peer group
- Demonstrating what improvement is possible for complex children and young people
- Sharing information and strategies with families and local services
- Supporting local services in planning long-term support packages
- Assessments continued to inform some local management plans several years later
- Often relatively rapid, with assessment/treatment complete in 3 months in some cases
- Useful pre-admission assessments, informing local management even when admission not recommended
Difficulties and poor outcomes
- Majority of difficulties related to distance:
- Family concern about the distance, especially 'across the border'
- Some families' objections meant referrals not made, sometimes leading to the child or young person having long periods untreated in community or in inappropriate adult wards.
- Lack of local services and prolonged debate about appropriate course of action could damage relationships between clinicians and families
- Less contact possible with family leading to distress and anxiety for patients, immediate family and extended families and friends
- Some families in debt from cost of visiting
- Difficult for local services to engage and fully benefit from admission to distant units
- Families and local services needed to build relationships again for discharge
- Difficulty accessing beds, almost never available in emergency
- Complex and time-consuming cross border issues in relation to Mental Health Act
- Difficulties for local services to provide appropriate care after time-limited admissions, with expectations created that could not be followed immediately
- Where local multiagency services unable/ unwilling to follow advice, patients deteriorated again following discharge
- Some prolonged admissions with delayed discharge due to difficulties securing appropriate long term care placement
- Looked after children and young people may have been living out of Health Board area even before admission to England so home services had limited knowledge of them, complicating discharge planning
A4.12.1 Pre-admission issues
Pre-admission issues are discussed in this section, rather than in section A4.5 because specific and different issues apply compared with pre-admission issues to other units. Patients were often already in inpatient care, and the admission to a specialist unit in England was a transfer.
Most families were unhappy about the need for their child/young person to go at great distance to England in order to be admitted to a suitably specialist unit. Some parents found the idea of their child crossing the border to receive care particularly difficult. Their objections in some cases meant that clinicians did not make referrals for care that was clinically indicated. These patients either remained for long periods in adult wards in Scotland or in the community with inadequate assessment and treatment. Practitioners reported 'struggling-on' when what was needed was a specialist inpatient assessment to properly assess the child's mental state and offer multidisciplinary interventions. Where clinicians felt they had no choice but to go against parents' wishes, this led to lengthy and difficult negotiations and legal appeals.
Having a child going to distant specialist hospitals usually came after a long period of uncertainty and stress for them and their families. Families were usually very committed to keeping their child or young person at home, but it was simply not safe. By the time the need for a specialist admission was identified, families had often already had months or years of severe behaviour disturbance at home, sometimes compounded by inadequate education, social care or housing. During the actual wait for a specialist bed, families had been either trying to manage their child or young person at home or had been very worried about their care in more local but inappropriate hospital settings. These factors, along with the distance of the specialist unit (and often having to transport their child there themselves), contributed to hugely traumatic experiences for families.
Beds at specialist units in England were not easily available and almost never for emergency or urgent admissions. Whilst colleagues from English units were helpful and responsive to referrals, the process of assessment by and arranging admission to the units usually took several months.
A4.12.2 Cross-border transfers and the Mental Health Act
Some younger patients were admitted to units in England informally, with parental consent. However, the Mental Health Act was frequently required for admissions and this led to lengthy and time-consuming discussion, organization, tribunals and paperwork. Where patients were not already in hospital in Scotland but needed to be detained to transfer to an English hospital, then complex arrangements had to be made to detain a patient into a Scottish hospital, even though they were not actually admitted, in order to legally transfer them for admission under the English Mental Health Act. There are differences between the English and Scottish mental health acts which also led to complications, such as the role of the named person.
Transfers were particularly complex where there were forensic issues. Patients on some Criminal Justice orders cannot be transferred across the border. Lengthy discussions were required with the Procurator Fiscal for at least one of these cases to allow a transfer under the Mental Health Act.
Transfers themselves could be very difficult to arrange, especially where they required to be facilitated by nurses skilled in working with young people with complex behavioural and/or forensic needs.
A4.12.3 Benefits of specialist LD CAMH inpatient units
Specialist LD CAMH inpatient units had multidisciplinary teams with clinicians skilled and experienced in working with children and young people with learning disability and autism spectrum disorder, and an appropriate physical environment, for example, robust building, furniture and fittings, and/or low sensory stimulation environments with access to suitable physical activity and exercise. This allowed safe and comprehensive assessments, with the ability to take young people off all medication where required in order to properly assess. Children and young people benefitted from the full range of nursing, psychological/behavioural, psychiatric, communication, sensory and occupational interventions. There was appropriate specialist education provision.
Where psychotropic medication was being given primarily for anxiety/agitation and associated behaviours, rather than for mental illness, medication doses were able to be reduced significantly. This will have reduced the risks associated with long term side effects. Significant improvements were seen in patients' mental health, anxiety levels and general well-being. For complex young people, e.g. with severe learning disability and self-injury, improvements in a very controlled, supportive environment showed their potential in the right environment. Local services benefitted greatly in terms of overall understanding of patients' needs and this allowed good long-term multiagency plans to be put in place.
Numbers were small to make generalisations but clinicians generally reported that, once there, families were happy with the assessment and care provided at the NHS specialist LD CAMH inpatient units in England. Detailed hospital assessments and recommendations continued to inform local multiagency management plans several years after discharge.
There were examples where assessments from specialist units did not result in admission being recommended. However, they helped local health services and their multiagency partners to better understand the child or young person's presentation and what was required to support them.
A4.12.4 Distance and its impact
Despite best efforts, families and local services were not able to visit often enough to learn as fully as possible from the admissions. In a number of cases, families were therefore not able to take on board recommendations on return home. However, local services described being able to use the recommendations to continue to work with some families who, over the longer term were able to change their management of their child or young person at home to good effect.
Similarly, recommendations from the units were not always taken up by one Local Authority at discharge and some children and young people were returned to the same suboptimal education and social care packages. The multiagency services required to support these young people are very complex, often including several professionals from within each of the main agencies (Health, Social Care, Education and Third Sector). Liaising with all of these services at a distance was very challenging. One Local Authority did not permit their local school staff to attend meetings at the unit in England, which impeded proper communication and planning. Examples were given of patients deteriorating again on discharge, requiring psychotropic medication for anxiety and agitation which would not have been required if the right environment had been provided for them. In one case, recommendations from inpatient assessments had to be repeatedly made by the LD CAMHS team and in the longer term appropriate changes were made to the young person's local management and school environment with positive outcomes.
Distance was a major issue for families. Young people could be in hospital as far as 500 miles away from home. Families could not visit frequently, particularly if they had other young children and other caring responsibilities. Parents would usually visit as often as they could, but maintaining contact with wider family and friends was generally not possible. "we are only able to visit once a fortnight. It is a 7 hour journey each way. Our child has not seen her siblings, aunts or grandma in over six months" Young people with mild learning disability who had a better understanding of time and distance, were reportedly homesick, missing their parents and were sad and agitated after family contact. It was difficult to be sure of the effect on those who had more severe levels of learning disability and communication problems and of their understanding of the situation.
It was difficult for parents not being near enough to visit their child quickly if something happened, e.g. if they were hurt or unexpectedly physically unwell. Parents were not able to see the child for themselves to reassure themselves they were alright. Speaking on the phone was not an option for those with greater degrees of learning disability. Some families went into debt or increased pre-existing debt due to the cost of travelling to visit. Where time limited admissions occurred, the distance had a more limited impact. However, it was harder when admissions were prolonged, especially due to lack of suitable social care/education resource to move on to. Families felt anxious and angry that they were losing control in these situations. Where parents had their own vulnerabilities and difficulties engaging with services, this could also be exacerbated by distance.
A4.12.5 Discharge planning
Admissions to some English units were time-limited to 3 months, allowing assessment, treatment and recommendations, but then discharge, to prevent beds being blocked while patients awaited care packages. One situation was described where, despite a will from all agencies to implement recommendations, they could not replicate the right environment locally in time due to a lack of trained staff. There was therefore an inevitable immediate deterioration post-discharge and it took many months to recruit and train staff to develop a suitable care package. With this in place, the young person is doing really well now, several years on.
Clinicians felt that it would have been helpful for the inpatient units to have had a greater understanding of local issues to inform their assessments and recommendations, for example, the feasibility of implementing plans in a remote/rural location. More consultation and advice on the practicalities of this and on developing highly specialist individualised packages in the communities would have been appreciated.
Discharge planning was particularly time-consuming, complex and difficult to manage when young people were at the point of transition to adult services. A number were admitted from children's services but discharged to adult care packages. There were examples of successful outcomes due to careful planning, but distance and a lack of familiarity of local services with the unit complicated the process and meant adult LD professionals had limited opportunity to get to know the young person and their needs prior to discharge. Where relationships between services and families had been damaged by difficult situations in the lead-up to admission, this impacted on families' engagement with service, during discharge and transition planning and beyond.
Looked-after children were again particularly vulnerable to difficulties associated with being in distant hospitals. Where they had been living in care/residential school outside their own Health Board area prior to admission, services in their own Health Board often had limited knowledge of them and sometimes did not take active-enough responsibility, further complicating discharge-planning.
A4.12.6 Other issues and concerns
In secure units, some families were concerned about restrictions on their young person's freedom and a more homely environment for visiting would have been helpful. Access to the local community seemed overly limited for one patient whose behaviour became more challenging than it had been in a local 'bespoke' arrangement using adult LD facilities and staff.
On isolated occasions, due to a lack of beds anywhere in the UK in known units, young people had to be admitted to relatively unknown, usually private facilities. Examples were given where care was either suboptimal or just provided a 'safe place' in an emergency. Local psychiatrists had to maintain a high degree of involvement as they were concerned about the care their patients were receiving, or to arrange transfer to a more suitable unit. This was very difficult at a long distance. Parents and clinicians were both concerned about the vulnerability of young people who could not tell them what was happening at these units and distance prevented them from visiting regularly. Sometimes young people were taken home again due to high levels of concern and local services had to 'cobble together' support or admit to local adult wards.
Relationships between services and families were damaged by many of the situations described in this section. In some cases formal complaints were made and/or families went to their MSPs or the press.