A4.7 Admissions to adult learning disability wards
Summary of characteristics of patients admitted to adult LD wards:
- Level of learning disability: None with no learning disability, 9 mild learning disability, 11 moderate learning disability, 5 severe/profound learning disability
- Autism spectrum disorder : no autism spectrum disorder ratio: 2.25:1
- Age: 68% were 16-17 years, 28% were 14-15 years
A4.7.1 Positive aspects of care
There were some good outcomes from admissions to adult LD units and it was apparent that staff worked hard and creatively to try and support young people as well as possible, under difficult circumstances. Considerable support and advice was often given by local CAMHS or LD CAMH clinicians during admissions and this was valued. Where an intensive LD CAMH community service existed, nursing staff from that team 'moved in' with their patient and nursed them in a segregated part of the adult LD ward. In other areas, adult LD psychiatrists recognised the lack of local LD CAMH expertise and provision and attempted to 'fill the gap' for young people who would become their patients anyway in the next few years.
Staff understanding and experience of learning disability was a key advantage over adult mental health and YPU units. They were more likely to understand the impact of the young person's learning disability on mental health and behavioural presentations. Learning disability-specific environments, appropriate communication and behavioural approaches all helped. A parent commented that all of their child's needs were covered in one place and the young person was treated fairly, equally and with dignity and respect. Staff took ownership but were welcoming to parents and involved them in decision-making.
Generally, adult LD units were closer to home than the regional YPUs. This was important to families, allowing more frequent visits, particularly when their own health problems or other caring responsibilities restricted travel. For those young people close to age 18, transition planning to adult LD and social care services was facilitated. For example, in some cases local providers identified to provide future care visited regularly to get to know the young person and provide activities. In others, staff from their existing school or social care agency maintained contact, working with young people on the ward.
A4.7.2 Patient safety and impact on children and young people
Adults with learning disability admitted to hospital usually have extremely acute mental health and behavioural problems themselves. Young people on adult LD wards were almost always nursed on constant 1:1 or greater observation levels and some were isolated altogether from adult patients. However, even when physically protected by 1:1 nursing care, they sometime saw/heard aggression and inappropriate sexualised behaviour from the adults, even if this was not directed towards them. Young people were sometimes inadvertently exposed to inappropriate TV programmes being watched by adult patients.
Despite safeguards some young people felt intimidated by the adult patients. Others felt that they did not 'belong' there, e.g. living alongside elderly patients with dementia. Others were particularly sexually vulnerable. Great care was taken to protect young people, including restricting movement and activities of adult patients. There was concern about these understandable safety measures leading to unnecessary isolation of the young person, with staff running the risk of becoming 'suffocating custodians'. A young person whose discharge was delayed due to a lack of a placement to move on to became bored, depressed and confused as to why they were still in there when feeling better. Their parents felt terrible about this and powerless to help.
The very high levels of disturbance of some of the children and young people themselves also meant that they were a risk to adult patients. Even experienced adult learning disability psychiatrists had not previously seen the levels of aggression and destructiveness shown by some teenage patients. Some young people who repeatedly assaulted staff due to inappropriate environments required regular restraint. This was felt in at least one case to have had a negative impact on the person's self-esteem and development.
A4.7.3 Lack of age-appropriate environment and interventions:
On adult LD wards, young people could not mix with those of similar age, thus lacking the important developmental challenges of a peer group. Environments and staffing were often not geared up to supporting the development of self-care skills. Safety concerns and limited staff confidence and expertise with young people led to risk adverse environments, further limiting developmental opportunities.
Families and clinicians shared concerns about staffing levels, lack of age appropriate activity and absent or minimal access to education. Lack of physical freedom and access to outside space and exercise were major concerns. One young man had to be contained in a single room for months on end due to his extreme challenging behaviour, risk of absconding and because there was no safe outdoor area for him to use.
There was also a lack of access to age appropriate multidisciplinary assessments/therapeutic interventions. Even when a CAMH/ LD CAMH psychiatrist acts as ' RMO' (Responsible Medical Officer) during admissions, other disciplines from children's services, e.g. nursing, clinical psychology, allied health professionals were usually not able to retain active involvement. Some were able to visit occasionally to advise, but this was not the same as being an active member of a ward multidisciplinary team. Different cultures, ways of working and emphasis between children's and adult professionals sometimes lead to time-consuming complications in such arrangements.
A4.7.4 Parental concerns and relationship with services
Parents described a range of emotions upon their child's admission to an adult LD setting including "relief that they were safe", "grateful that we had a chance to sleep at last" and "hope that things would get better". However, this was often short-lived with parents describing developing anxiety when " the setting turned out not to be ok", "I became concerned about her care" and "the admission became prolonged because there was no where appropriate for her to be discharged to".
Clinicians reported that some families were deeply upset and opposed to the admissions from the start; although most accepted that there was no alternative. Other families, whilst having concerns about many aspects of prolonged admissions, did eventually see and acknowledge positive outcomes. Clinicians felt that admission was very traumatic for some families. Antagonistic relationships developed between services and families, e.g. with one family who wanted their child to be in hospital but then wanted them discharged due to concerns about the lack of age appropriate activities and the degree of restriction and security on the adult ward.
A number of psychiatrists specifically commented on the difficulties relating to systemic family issues around adolescence. They recognised the huge dedication and commitment of the vast majority of families and the stresses they have often been under for many years. Adult LD inpatient teams had limited experience of issues for families with children and adolescents and clinicians usually have no formal family systems training. Clinicians reported that many of the most challenging admissions of young people involved difficult family issues. Professionals not experienced in working with children and their families struggled when families had strong beliefs about the cause of their child's difficulties or were convinced that something had been missed. Clinicians recognised that parents may have been struggling with attachment issues and trusting others to care for their child, and that this was a natural process.
Some parents reported a lack of acknowledgement on the part of the staff of their expertise and knowledge of their child, and felt insufficiently included in conversations about them.
"I explained his needs to the staff but the hospital had 'to do it their way' which I feel was upsetting for my son"
"Maybe the hardest part was feeling that the health professionals took over the function of being the parent, that our views and experience of her no longer seemed to matter"
Difficulties of trust were exacerbated when there was poor communication from ward staff, including inadequate documentation and explanation of bruising and poor coordination of care.
Whilst staff on adult LD wards tried to accommodate parents spending time with their child, this could be difficult from a practical perspective in terms of staffing and physical environment, including keeping the parents safe from other patients. This limited the amount of time some were able to spend together.
The difficulties associated with managing highly complex young people on inappropriate adult wards resulted in breakdowns of relationship and trust between some families and local services, which negatively impacted on the patient's future care.
Families were usually strong advocates for their children and most worked collaboratively with staff teams to make admissions as successful as possible. Clinicians described concern for 'looked after children' and for those whose families were unable to support and advocate for them due to their own social and mental health vulnerabilities. These parents could become extremely distressed about issues such as prolonged seclusion, lack of appropriate facilities and lack of access to appropriate activities. However, staff struggled to engage well and support these families effectively while at the same time managing complex and time-consuming admissions.
A4.7.5 Complex/severe presentations and staff expertise
Adult LD ward staff were usually very experienced and concerned to provide the best care to young people when they are admitted. However they struggled to manage those who had very high levels of aggression, self-injury and destructiveness. This may have been partly due to an unsuitable environment, particularly for young people who couldn't cope with being around other patients. Higher nursing ratios and a small consistent core team of staff around an individual patient was often required, rather than a traditional big nursing team for the ward.
Adolescents with learning disability (often also with autism spectrum disorder) were noted to show particularly severe self-injury, aggression and destructiveness, even compared to their adult counterparts. Staff on adult LD wards reported feeling de-skilled and lacked confidence in their ability to support young patients in the way they would have liked to. Some had limited understanding of childhood development, the impact of puberty and inadequate knowledge of and links with Children's services. There was concern due to inexperience about using control and restraint techniques, tranquilisation etc., particularly in younger teenagers and children. There are differences in the presentation of mental illness, developmental disorders and behaviours at younger ages and these were unfamiliar to staff. Early onset mental illness can be particularly severe and complex, e.g. a patient with early onset treatment resistant psychosis had one of the most difficult presentations ever seen by one adult LD psychiatrist. There were cases where illnesses such as depression were not picked up during admission.
A4.7.6 The physical ward environment
The adult LD wards' physical environment was not suitable and robust enough for a significant number of young people, particularly those with additional autism spectrum disorder and highly aggressive and destructive behaviours.
Considerable and costly adaptations to the physical environment had to be made for a number of the patients admitted to open adult LD wards. Extensive reinforcement of all fittings and securing of furniture was often required. In a number of cases the need for space separate from the adult patients closed access to beds and living space for adult patients for months or even years. Office space was converted for others, and there was an example of the use of staff bathroom facilities for a patient, with knock-on effects on services and staff hygiene. One teenager had to be nursed for well over a year in isolation in an environment completely stripped of any furniture and fittings. Numerous ongoing repairs (sometimes on a daily basis over a period of months) had to be made to ward environments in a number of cases, including regular call-outs of emergency joiners.
A highly expensive bespoke robust suite of rooms had to be built to accommodate a patient with particularly destructive behaviour. The design and building of this was complex, and the patient was meanwhile nursed in one room over a lengthy period. The patient had to live, eat and carry out education and all activities in one room. There was a lack of natural light and air conditioning at times due to damage from destructive behaviour. Considerable practical issues were faced, including how to make repairs and clean the space, particularly as the patient was regularly urinating and smearing faeces in the room.
Part of an adult LD day hospital had to be closed and adapted for the admission of a young person, limiting access to other patients and holding up development plans for that unit.