Psychosis & Learning DisabilitiesPsychosis and learning disabilitiesPeople with learning disabilities are more likely to develop mental health problems than other people. Researchers estimate that up to three per cent of people with learning disabilities have schizophrenia. However, the majority of research studies about schizophrenia don’t include people with learning disabilities, and very little research focuses exclusively on people with learning disabilities and psychosis. There is therefore very little evidence about what treatments work best. Furthermore, most of the research in the field of psychosis and learning disabilities concentrates on people with mild learning disabilities, not those with more severe learning disabilities. Symptoms and diagnosisIt can be more difficult for doctors to make a diagnosis as people with learning disabilities often behave in a way that could make others incorrectly think they are hearing voices or experiencing some of the other symptoms of psychosis. Behaviour such as talking to yourself, or talking to imaginary friends, may be developmentally appropriate for someone with learning disabilities, for example. People with learning disabilities are sometimes very concerned about what other people think (often because they have been treated unkindly, rejected or discriminated against in the past) and this could be misinterpreted as having paranoid thoughts. They can sometimes express their thoughts in a way that appears to be jumbled, which could be misattributed to the confused thinking that is a symptom of psychosis. It can sometimes be hard, therefore, for doctors to work out whether someone’s behaviour is normal for them, or whether they are acting in a certain way because they are experiencing an episode of psychosis. When making a diagnosis, doctors may look for changes in the way people normally behave, or changes in their personality rather than evidence of hallucinations or delusions. Early signs of psychosis could be socially inappropriate or disturbed behaviour that is out of character. Challenging behaviour that becomes more frequent or more severe may also be a sign that someone is unwell. Doctors will talk to family members and support staff to collect background information and get an accurate picture of someone’s normal behaviour to help them make a diagnosis. People with learning disabilities and schizophrenia often experience the ‘negative’ symptoms of the illness more acutely than the ‘positive’ symptoms of psychosis (see Schizophrenia page). These negative symptoms – lack of energy, lack of motivation, loss of interest in themselves and other people, loss of interest in personal appearance, memory problems and becoming socially withdrawn – can seriously affect people’s quality of life, and those with a diagnosis of schizophrenia may need a lot of support. It is even more difficult to distinguish the symptoms of psychosis in people with more severe learning disabilities who are often unable to communicate properly. Researchers think psychosis may sometimes be mis-diagnosed in people with learning disabilities, or not picked up at all. TreatmentPeople with learning disabilities and psychosis are treated with antipsychotic medication in the same way that people without learning disabilities who experience psychosis are prescribed these drugs. Similarly, the same sort of medication is prescribed for everyone if a diagnosis of bipolar disorder is given (see Medication page). However, mental health professionals think that lower doses of antipsychotic medication may be more effective for people with learning disabilities. There has been little research specifically testing the effectiveness of different antipsychotics for people with learning disabilities, and people with learning disabilities are often left out of trials testing drugs used to treat psychosis. There has been hardly any research looking at the possible side effects of antipsychotics for people with learning disabilities. Similarly, there is little research about how effective family therapy or cognitive behaviour therapy for psychosis is for people with learning disabilities. Both of these talking treatments are recommended in the National Institute for Health and Clinical Excellence (NICE) Guideline for Schizophrenia (see What you can expect from the NHS and Treatment and care pages). Services – specialist or mainstream?Most people with learning disabilities are treated in mainstream mental health services or community-based learning disability services. This is in line with government policies, which say people with learning disabilities should access the same mental health services as everyone. However, some mental health professionals may not understand the specific and often complex needs of someone who has learning disabilities and mental health problems. There may be communication difficulties, for example, and if mental health professionals have little experience of working with people with learning disabilities, they may not have the skills they need to make correct diagnoses and plan effective treatment. The Department of Health recognises that some people may be better supported in specialist mental health services catering solely for people with learning disabilities. Some research studies have shown that people with learning disabilities are better supported in specialist services, but there has been little research to investigate what works best. Many people with learning disabilities and mental health problems are placed in residential or specialist treatment centres far from their families and community, despite government policy to treat people locally. Those research studies that have been completed have shown people who are admitted to a specialist unit stay in hospital longer, but are less likely to be discharged to healthcare facilities away from their home area. Part of the care package offered by a specialist unit will be planning discharge to meet the needs of an individual with learning disabilities, using expert knowledge and skills. Specialist services may also be more appropriate for people with more severe learning disabilities, or those who have very complex needs that cannot be met as effectively in mainstream services where there are less likely to be professionals with experience of working with people with learning disabilities. An example of a specialist service is the inpatient unit at the Bethlem Hospital run by South London and Maudsley NHS Foundation Trust which includes four beds for people with learning disabilities and mental health problems who can be referred from anywhere in the UK. There is also very little research on whether community-based mental health services are effectively meeting the needs of people with learning disabilities. The Estia CentreThe Estia Centre is part of South London and Maudsley NHS Foundation Trust (SLaM) and works towards making sure the mental health needs of people with learning disabilities are met – through specialist clinical services, research, and a programme of training and education for both support workers and mental health professionals. Members of the Estia team work in SLaM’s clinical services and at the Institute of Psychiatry. There is a dedicated team at the Centre responsible for organising a large portfolio of training, offered routinely to staff in social care and mental health services in south London, and also available on request to staff working in services around the UK and in other countries. For more information, visit the Estia Centre website. This page was put on the site on 1/5/10
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