A2.1: Discussion paper re issues to consider when young people with learning disabilities are admitted to adolescent inpatient units
This paper was produced after a meeting where representatives from the 3 inpatient units and clinicians working with young people with learning disabilities were invited to share thoughts on managing support needs. Not all of the suggestions will be necessary for every young person with a learning disability but all are relevant for consideration when planning the admission of a young person with a learning disability. All of the suggestions would be in addition to the usual good practice which occurs when a young person is admitted to one of the units.
Consultation prior to admission
We felt it would be useful (where possible, depending on urgency) for the clinicians seeking an admission to request a consultation with the proposed unit in the first instance. Where the admission is urgent, detailed telephone consultation is required. It is helpful to clarify whether the unit can meet the young person's needs prior to involving the young person in the process. An important issue to clarify would be around the unit's physical environment, how they would identify possible presentation of significant behavioural challenge, possible triggers, escalation cycle and possible de-escalation strategies. It is also important to assess whether the unit is equipped to meet the young person's medical needs e.g. able to respond to potential medical emergencies or have access to appropriate specialist support. It is also helpful to get a sense from community teams about premorbid functioning to have a sense of what is mental illness and what is disability and what normal functioning may look like.
If clinically indicated it may be necessary / beneficial to assess the young person in their own environment for example visiting them at home with the referring clinician.
It is helpful to seek advice from family / carers re the level of preparation a young person would need prior to admission and the most helpful form e.g. a social story, a video of the unit, a tour.
We felt it might be helpful to develop social stories for the units around coming into hospital at different communicative levels.
It is helpful to get a sense from families / carers of young people's communication systems. If speech is limited it is helpful to get information from parents / carers re communicative vocalisations or sounds. This would include their capacity and awareness of hunger / thirst / physiological discomfort e.g. full bladder and bowels / pain and how this might be communicated. Also to get a sense of a young person's ability to seek help. A personal passport may have a role here perhaps produced by the community team.
It is helpful to get a sense of a young person's capacity to make informed choices both in terms of admission and the need for use of the Mental Health Act and/or the Adults with Incapacity (Scotland) Act but also for much smaller things such as meal choices.
It is helpful to get a good understanding before admission of the person's needs in terms of environment. Young people with Learning Disability, particularly if they also have Autism may find busy, noisy, visually stimulating environments difficult. For example, some young people may find it difficult being in a room with more than one or 2 other people, particularly when they are talking. School staff as well as family/carers can be a good source of information about their needs in this respect. Apparently unexplained sudden outbursts of agitation may occur due to being over-aroused/over-anxious by the environment.
These individuals may benefit from a small group of identified keyworkers whom they could possibly meet prior to admission.
We felt it might be helpful to develop social stories around going into hospital – what to expect in terms of your own room / bathroom, meal times etc. We also thought social stories around visiting, investigations, therapeutic interventions including medication and who will help me would be useful. Due to initiation difficulties it might be helpful to have a social story re asking for help / communicating pain / discomfort.
There would also be a need to individualise additional social stories around areas of mental health difficulty e.g. anxiety or other symptoms.
A speech and language assessment can often be useful on admission to get a sense on receptive and expressive communication and the number of information carrying words a young person can understand. This can inform care planning and may change over time as a young person's mental health improves. This knowledge can also help staff to make therapeutic interventions accessible to a patient and assess their capacity. SLT can support the provision of accessible information e.g. about medication and mental health disorders.
It can also be helpful to request a consultation from Clinical Psychology to allow a staff team to get a sense of a young person's cognitive profile and possible strengths and weaknesses. Young people with learning disabilities can sometimes present patchy cognitive profiles that can make their presentation and overall level of functioning appear inconsistent and difficult for people to make sense of. Both the speech and language and psychological assessment may be available from the community team at admission if the young person is well known to the service.
Young people with learning disabilities generally benefit from visual supports such as a visual timetable with clear now / next indicated to help the young person to understand the activities of the day. Maximal use of routine is helpful to reduce anxiety.
It is important family contact / the opportunity to phone home / carers is on the timetable to help the young person not to feel abandoned. Time concepts are often difficult and they can struggle to hold people in mind. Also there may be a greater need to keep to a set schedule of appointments to avoid where possible something unexpected happening.
It is likely to be helpful for a staff member to go over the timetable and help prepare a young person for the next day and then at intervals throughout the day e.g. morning, afternoon and evening.
It is important to monitor physical health needs as young people with learning disabilities can struggle to initiate, for example in communicating they are in pain / discomfort or experiencing drug side-effects. They are also more likely to have co-morbid medical and mental health disorders.
Young people with Learning Disabilities can be particularly sensitive to medication side effects. It is generally best to start with lower than normal doses of medication and increase slowly, with careful monitoring, to reduce the incidence of side effects and increase the likelihood of a successful response. Physical co-morbidities are common and liaison with Pediatricians and Pharmacists is often required to ensure safe prescribing.
It is important to consider the sensory environment in that a young person maybe seeking or avoiding sensation in terms of sight, auditory, olfactory, gustatory, touch, movement. If these are viewed to be an issue seeks occupational therapy support.
Young people with learning disabilities need access to developmentally appropriate activities in leisure time to reduce their anxiety and improve coping. They may want to watch television programmes suitable for younger children because they are unable to make sense of age appropriate programmes. They need to space to watch / play with toys which is separate from other young people to reduce ridicule. Toys will likely need to be brought from home as they are likely to be unable to engage with ward games.
They are likely to require greater staff support and supervision during unstructured times as they may struggle to occupy themselves and won't understand the communication of their peers and general conversations.
Young people with learning disabilities may struggle to make an informed choice and may well repeat the last option presented. It is best to present two choices simultaneously to promote understanding.
It is worth considering the usefulness of an advocate if the young person does not already have one.
It may be helpful for staff to have additional training in challenging behaviour looking at definitions, understanding the function of challenging behaviour, recording systems and such like.
The adults with incapacity act can be helpful if a young person (over the age of 16) is deemed to be incapable of acting on decisions; making decisions; communicating decisions; understanding decisions; or retaining the memory of decisions. It allows you to consider whether a young person can make safe decisions about their lives or if they need to be made by others in their best interests.
When a young person is ready for discharge it is helpful to consult back to the system about what has worked well to promote their management in the community.
We felt a social story around "I'm feeling better and I'm going to leave hospital soon" might be helpful. Also a social story about how to get help in the community.
Consideration should be given to a communication passport for the community particularly if the young person is not returning home.
Occupational therapy where appropriate can be very useful in supporting meaningful integration.
For further information contact Gayle.Cooney@ggc.scot.nhs.uk
Dr Gayle Cooney, Consultant Clinical Psychologist, West of Scotland Adolescent Inpatient Unit, Principal Clinical Psychologist, LDCAMHS, Greater Glasgow and Clyde.