Studies have demonstrated that people with intellectual disabilities stay longer in acute psychiatry units than other patients. However, proper approaches and procedures will lead to improved outcomes and the current policy can succeed if services are designed to make it effective.

Neill Simpson (UK) and Sarita Soni (UK)

Introduction

People with an intellectual disability (ID) can develop any of the range of psychiatric disorders that are seen in the general population; but the prevalence of psychiatric disorders is higher in people with ID with one study quoting prevalence of nearly 50% (Cooper and Bailey, 2001). Also, people with ID are more likely to be admitted to hospital: a study in Canada found that people with ID and schizophrenia were 15 times more likely to be admitted than people without ID (Balogh et al. 2010).

People with ID may present with behaviour problems as well as psychiatric disorders. For example, many admissions for people with ID are because of problem behaviours, where the cause(s) may or may not have been identified. If left unmanaged there is a risk of placement breakdown.

Why might someone with ID be admitted to an acute mental health ward?

If an individual who requires hospital admission (see Box 1) is known to have mild ID, and clear mental health problems, the most appropriate service for them is likely to be an acute mental health ward, in keeping with government recommendations (The Same as You, 2000, Scottish Government; Valuing People, 2001, Department of Health). Sometimes, it may well be that the admission is inappropriate and the outcome for the person with ID may be poor (Chaplin 2009). For example, an acute mental health ward is the only option if no other suitable service is available either because of lack of investment in specialist services or a lack of available beds.

Box 1: Criteria for admission to hospital for assessment of mental ill-health

1)      The person has (or is likely to have)

a)      mental illness OR

b)      behavioural problems related to illness

2)      There are risks related to the person's illness or behaviour

a)      to the person's own health, welfare or safety OR

b)      to the safety of other people

3)      Community-base assessment is not sufficient because

a)      assessment requires observations by skilled staff more frequently than can be achieved in the community OR

b)    assessment requires staff to work as a team at unpredictable times (e.g. to manage risks) OR assessment requires facilities or equipment provided by a hospital

Less commonly, someone with an unrecognised ID may be admitted to an acute mental health ward. This may occur if previous assessments have not been carried out or are incomplete, or if this is the person’s first presentation with psychiatric illness. If the ID is unrecognised, it may be because it is mild, in which case an acute mental health service may be the most appropriate service for them anyway.

Some ID units do not accept admissions outside the usual working hours of 9am – 5pm; most admissions to ID units are planned, compared with admissions to mental health units (Hemmings et al. 2009). In these cases people with ID are admitted to acute mental health wards with the expectation that they will transfer to a specialist unit as soon as a bed has been identified.

Vignette

Mr A is a 20 year old man with mild ID and schizophrenia. He lives alone and over the last few months he had been non-compliant with antipsychotic medication. At his last out-patient appointment, he was found to be acutely psychotic with persistent auditory hallucinations and paranoid ideation. Given his reasonable level of functioning and clear psychiatric presentation, he was admitted to an acute psychiatry ward where his medication was reinstated and his mental state was observed. He settled quickly on the ward, and interacted with other patients appropriately.  Within a few weeks, his symptoms had abated and he was discharged home with a plan in place to ensure support with future compliance with medication.

Should people with ID use acute mental health units?

Policy-makers have promoted inclusive approaches for decades, encouraged by advocates for people with disabilities. In the 1980s the 'normalization' movement asserted that 'special' provision typically results in disadvantage for people who lack valued social roles (Wolfensberger 1972). It is sometimes said that disadvantage is created by society not by disability, so services should make all necessary reasonable adjustments to include people with all kinds of disability. Is it possible for adult mental health units to provide a good service for people with intellectual disabilities? To summarise the research and the experience of the authors, the answer is:

  • Yes if:

*         Individuals are adequately supported.

*         The purpose of admission matches the function of the unit.

*         The service is designed to make it succeed.

  • No if:

*         The unit does not adequately protect the person.

*         The discharge is significantly delayed.

*         The complexity of the person’s needs requires a specialist service and one is available locally.

And there is a grey area: patients and their families may have preferences based on previous experience.

Adequate support: The inpatient team requires information about the person's support needs that arise from intellectual disability. The existing support plan should be continued or adapted while the person is in hospital. Depending on the extent of the person's needs, it will be necessary to arrange a handover of the support plan to the hospital team or to coordinate the hospital team with people who provide the existing support plan.

Purpose of admission: It is reasonable to expect an acute mental health unit to assess mental ill health, but it is not reasonable to expect the inpatient team to be skilled at assessing problems outside the range of their usual expertise. Adult mental health units are unlikely to be skilled at:

  • assessing behavioural problems unrelated to mental illness;
  • assessing complications of conditions seen rarely in the general population such as Prader-Willi syndrome;
  • assessing complications of epilepsy;
  • designing care plans for people with severe and profound intellectual disabilities.

Service design: Effective teamwork requires more than a set of skilled practitioners working together with professionalism and goodwill; there ought to be a shared purpose, with complementary roles organised to deliver a patient-centred service. Unfortunately, services are rarely designed systematically to deliver an effective response for everyone who could benefit. The authors' experiences are that adult mental health units vary greatly in their response to people with intellectual disabilities. Key factors appear to be:

  • The organisation has policies, procedures and adequate resources to enable a good service to be offered. If the organisation gives the impression that 'inclusion' means nothing more than squeezing everybody into an inadequate service, it is unlikely to make reasonable adjustments to deliver a good service for people with intellectual disabilities.
  • Senior members of staff explicitly promote inclusion. In particular, having a nurse in charge committed to inclusion appears to be helpful.
  • Access to specialist skills is prompt and easy. It requires advanced skills to provide a good service in a generic setting for people with complex needs, and if the inpatient team needs additional skills they should be made available through some mechanism (such as secondment, liaison, and training).
  • Coordination is proactive. It is helpful to identify a 'named nurse' who is interested and willing to undertake the coordination with others who are able to assist, such as the local community team for people with intellectual disabilities.

Protection: Other patients or visitors to the unit may present risks for vulnerable adults. If patients are unable to protect themselves, they may need additional protection, which may be difficult for the inpatient team to provide.

Discharge plan: it has been observed that carers of people with intellectual disability usually respond when a person becomes ill by increasing their support, with the consequence that admission to hospital is often avoided until the intensity of illness and risks have become intolerable. For the same reason, discharge is usually quick if the person can safely return to the existing support plan. However, if the person's needs change as a result of illness, or if the previous support plan is no longer available, then discharge planning becomes complex and discharge may be delayed. Adult mental health units can only function effectively by maintaining a flow of admissions and discharges, so delayed discharge can be a serious problem.

Complexity: Some people with intellectual disabilities have very complex needs and assessment may require a combination of skills and environment that are more readily delivered in a specialist unit.

Advantages and disadvantages of a person with ID being managed in an acute mental health unit

Advantages

Access to mainstream services reduces the potential stigma of having separate services for people with ID, particularly those with mild ID. Nursing staff on acute mental health wards may have psychiatric expertise that is not seen in intellectual disability trained nurses.

Several studies have found that people with ID have shorter lengths of stay in acute mental health units than specialist ID units e.g. Alexander et al. 2001, but this may represent premature discharge without adequately-planned aftercare.

Longo and Scior (2004) found that patients with ID rated general psychiatry wards more positively in terms of supportive peer relationships.

Disadvantages

The literature provides evidence for numerous disadvantages for people with ID on admission to acute mental health units. Although these potential problems are real, some may be resolved with appropriate care, training of staff and organisational adaptation.

  • Vulnerable people with ID may be subject to exploitation or abuse by others.
  • People with ID may be more likely to be aggressive or assaultive to others on the ward (Saeed et al. 2003). They are also more likely to be restrained or receive seclusion (Way & Banks 1990) and receive 1:1 nursing (Lohrer et al. 2002)
  • The general needs for support and care (hygiene, nutrition, toileting, safety etc.) arising from ID may be excessive and time-consuming for staff.
  • Assessments done by the unit may not be valid e.g. rating scales, self report questionnaires.
  • Activities offered in the therapy programme may not be appropriate.
  • The 'patient mix' may be difficult to manage.
  • Beds may become “blocked” by patients with ID who may have an extended duration of stay.
  • In a qualitative study of service users’ and carers’ perspectives (Longo & Scior 2004), patients with ID on acute psychiatry wards felt

*         disempowered

*         that staff were unfriendly or harmful

*         that the environment was poor

*         that there was a lack of freedom

*         upset by others’ behaviour

*         vulnerable and lonely.

Carers felt

*         staff were under-involved

*         people with ID were subject to neglect

*         that there was poor discharge planning

*         that there was poor service response

*         ignored and rejected

*         concerned about the patient’s safety.

  • Staff may lack the necessary expertise to care for people with ID and their specific needs. If staff feel de-skilled, they may consequently develop negative attitudes to patients with ID (Chaplin 2004). In some cases, professional bodies may advise that they should not provide care for patients for whom they lack competence; however it may be difficult to develop the relevant skills owing to the small numbers of people with ID that they see (Bouras and Holt 2004).
  • It has been predicted that a significant proportion of psychiatric disorders are undetected in people with ID because of ‘overshadowing’ where all of a person’s difficulties are attributed to their ID. This may be particularly prominent on acute mental health wards where staff are not familiar with the various ways in which mental health problems can present in people with ID.

Vignette

Miss B is a 45 year old lady with moderate ID and a long-standing history of brittle bipolar disorder. She became toxic on lithium, and the dose was reduced, but she subsequently became hypomanic and required admission. As no ID beds were available, she was admitted to an acute psychiatry ward. On the ward she exhibited symptoms of hypomania (appropriate to her developmental stage) such as shouting, aggression towards staff, self injury, tearfulness and episodic confusion. Staff on the ward did not identify these symptoms as relating to mental illness, and attributed them to “behaviour” and “for no reason”. A decision was made to discharge her after six days with no changes to her medication, and no improvement in her symptoms.

What can families expect when their relative with ID is admitted to a mental health ward?

Compliance with legal requirements: The Equality Act (2010) requires public bodies such as Health Boards and Health Authorities to make reasonable adjustments to remove barriers to disabled people. Qualified staff should be familiar with laws to enable decisions to be made if the person lacks mental capacity to make specific decisions and/or requires compulsory treatment.

Respectful attention: the patient, relatives and carers should be treated with respect, and their views taken into account. If the patient has communication problems, efforts are made to optimize communication (possibly using expert advice).

Non-discrimination: Having an intellectual disability should not be used as an excuse for inferior care (for example, failing to investigate symptoms of physical illness).

Collaboration: Support, protection and treatment for a person with an intellectual disability and mental health difficulty should be provided. This is complex and likely to need coordination of more than one team.

Focus on illness: Hospital teams should focus on the reason for admission, and families should not expect them to initiate other interventions.

Focus on early discharge: It is not the function of hospital to provide respite care.

What do professionals on acute psychiatry wards need to be aware of?

Don’t assume, assess: Be aware of diagnostic overshadowing. Never guess IQ or level of ID. If you rely on other people's assessments, reference the source. If previous cognitive testing has been carried out, it would be necessary to locate these and confirm their validity.  If the patient is not already known to ID services, the diagnosis of ID needs to be confirmed. This may require the expertise of a clinical psychologist to advise on what assessments are required.

Don't keep re-assessing: Find out about existing assessments and diagnoses – and confirm their validity

  • What is the person’s level of development? What developmental disorders do they have?
  • What is the person’s usual state of health? What illnesses do they have?
  • What’s new?

Presentation of mental illness in people with ID: Mental illness may manifest differently in people with ID, and the various presentations of mental illness should be borne in mind. For example, aggressive or other problem behaviours are more frequently seen compared with the general population.

Don't invent new care plans for old problems: Find out about existing care plans - and maintain (or reinstate) them.

Expect complexity and comorbidity: having a developmental disability does not protect someone from illness, it may be a risk factor. But still, common things occur commonly!

Use your existing skills: Most of the things that need to be done are within the set of skills in your basic training. Ask for assistance to supplement them.

Don't be overwhelmed by complexity: Focus on:

  • Communication
  • Decision-making capacity
  • Design of the care plan (e.g. process of transition between service settings)

Attitudes and emotions: When faced with patients with ID, professionals need to take some time to reflect on their personal attitudes and beliefs about people with ID. Much research has been carried out into the attitudes of staff towards people with ID and the consequent impact on the person with ID and the services they receive. For example, Lindsey (2002) suggested that the consequences of professionals undervaluing people with ID may result in neglect, ill-treatment and discrimination. Negative attitudes held by staff may influence the formation of attitudes of newly recruited staff members (Paris 1993). It appears that the more exposure staff have to people with ID, and the more training they receive, the more positive are their attitudes towards them (Costello et al. 2007).

Protection: Patients with ID on acute psychiatry wards are vulnerable and may be subject to abuse by other patients. Staff need to be aware of the different forms abuse may take, including verbal or physical abuse and also the damage that occurs by stigmatising those with ID. Vice versa, patients with ID may be aggressive towards others without ID: Tardiff & Sweillam (1982) found patients with ID were twice as likely to be assaultive in inpatient units as patients without ID (16% vs. 8%).

For organisations: what is cost-effective?

Don’t gamble that no-one will need the service: No matter how small your organisation, you are not exempt from responding to the most complex cases, which will turn up sooner or later.

Don’t assume that a suitable service exists out there, somewhere: Some organisations assume that they can purchase specialist services when required. Winterbourne View has now closed, but there has been little progress to move people from remote Assessment & Treatment Units to services nearer home in England.

Do plan collaboratively: Develop policies and procedures to promote collaboration. For example, some teams have produced a “hospital passport” to provide information that is required when a person is admitted. Scottish Health Boards are required to have a written “Psychiatric Emergency Plan”, which may include guidance about how to provide emergency mental health care for people with intellectual disabilities locally.

Do develop local teams: Invest in teams with the expertise to support people in using local facilities. Read the Mansell report (Department of Health, 2007).

Policy: should services be inclusive?

Government policy continues to develop in each of the nations of the UK. A useful review was published by the Royal College of Psychiatrists (2012). The policy in England, Valuing People, (Department of Health, 2001) described the failure of the wider NHS to consider the needs of people with learning disabilities (now referred to as ID) as the most important issue which the NHS needs to address for people with learning disabilities. The policy states “As for their other health needs, people with learning disabilities should be enabled to access general psychiatric services whenever possible. This will require mainstream mental health services to become more responsive, and specialist learning disability services to provide facilitation and support.” It also expected that “Each local service has access to an acute assessment and treatment resource for the small number of individuals with significant learning disabilities and mental health problems who cannot appropriately be admitted to general psychiatric services, even with specialist support”.

Policy in other parts of the UK is equally unambiguous, and the direction of policy has not changed. For example, the Scottish policy, Keys to Life (Scottish Government, 2013) confirmed the existing policy that “the general healthcare needs of people with learning disabilities should be met in the same setting as the rest of the population. This is an appropriate but challenging aspiration given the co-occurring nature of need”.

The view of the authors is that the policy gives the right direction, and can succeed if services are designed to make it effective.

References

Cooper S-A, Bailey N M. Psychiatric disorders amongst adults with learning disabilities - prevalence and relationship to ability level. Irish Journal of Psychological Medicine 2001; 18: 45-53

Balogh R, Brownell M, Ouellete-Kuntz H et al. Hospitalisation rates for ambulatory care sensitive conditions for persons with and without an intellectual disability: a population perspective. JIDR 2010; 54: 820-832

The Same as You, 2000, Scottish Government

Valuing People, 2001, Department of Health

Chaplin R. General services for people with intellectual disability. JIDR 2009; 53(3):189-199

Hemmings CP, O’Hara J, Holt G et al. BJLD 2009; 27: 123-128

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Costello H, Bouras N & Davis H. The role of training in improving community care staff awareness of mental health problems in people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2007; 20: 228-235

Tardiff K & Sweillam A. Assaultative behaviour among chronic inpatients. Am J Psychiatry 1982; 139: 212-215

Department of Health (2007) Services for people with learning disability and challenging behaviour or mental health needs [online] - accessed 2/10/14

Royal College of Psychiatrists (2012) Enabling people with mild intellectual disability and mental health problems to access healthcare services (CR175) London.

Scottish Government (2013) The Keys to life [online]

NDTi Green Light Toolkit

This article was originally published in Psychiatry; Volume 2:8, August 2003 and then on this website by kind permission of the Medicine Publishing Company. It was revised and updated in 2014.