- Psychosis and learning disabilities
- Symptoms and diagnosis
- Services – specialist or mainstream?
- The Estia Centre
Those with learning disabilities are much more likely to experience mental health problems than others. Studies have shown that as much as 3% of people with learning disabilities also have schizophrenia, for example. Compare this with 1% of the general population. However, research also suggests that psychosis symptoms might not be diagnosed correctly for people who have learning disabilities. In fact, symptoms might not be noticed at all.
Most research studies on schizophrenia do not include people with learning disabilities and there is very little research that has an exclusive focus on this group and the incidence of psychosis. Therefore, there is very little evidence on how to treat people with learning disabilities that have psychosis symptoms. Moreover, the majority of psychosis and learning disabilities research is centred around people who have mild learning disabilities and not people who fall into the severe learning disabilities category.
Diagnosing patients when they have a learning disability is often difficult for doctors. This is because they often behave as if they are hearing a voice or having psychosis symptoms when they are not. Doctors have the difficult task of working out whether a person’s behaviour is normal for them or if they are acting differently because they are having a psychotic episode.
Talking to an imaginary friend or to yourself, for example, might be appropriate developmentally for a person who has a learning disability. Sometimes, people who have a learning disability might express their thoughts in an apparent jumbled way, which might mean that they are understood, incorrectly, as having confused thinking, a symptom of psychosis. Also, people with learning disabilities are sometimes overly concerned about others’ thoughts – this is frequently because they have been discriminated against, treated unkindly or rejected. These concerns might be misinterpreted as another psychosis symptom: paranoid thinking.
The challenge of distinguishing psychosis symptoms is even more challenging when a person has severe learning disabilities and cannot communicate properly. It is also an occurrence for doctors to misdiagnose mental health condition with challenging behaviour, which has many causes. Nevertheless, if challenging behaviour is new, more severe or more frequent, it might be a sign that the person is unwell mentally.
When a doctor makes a diagnosis, he/she should look out for changes to a person’s usual behaviour and changes in personality. Behaviour that is disturbing or socially inappropriate that is out of character is likely to be an early symptom of psychosis, for example. The doctor needs to talk to family members and support staff who have a good knowledge of the person in order to get an accurate picture of their normal behaviour. This will help them to make a diagnosis.
People with learning disabilities and a schizophrenia diagnosis are given the same antipsychotic medication as people without learning disabilities. In a similar way, they will be prescribed the same medication for bipolar disorder.
That said, mental health specialists do think that a lower dose of antipsychotic medicines might be more effective for those who have a learning disability. There has not been much research in this regard, though, and people with a learning disability are not usually involved in drug trials.
There has been research that looked into the side effects of antipsychotic medication for people with a learning disability and a lot of doctors think that people with a learning disability might experience side effects more.
There is very little research about the effectiveness of CBT (cognitive behavioural therapy) or family therapy for psychosis with learning disabilities. Both of these talking treatments are mentioned in the NICE (National Institute for Health and Care Excellence) guidelines for schizophrenia but the guidelines don’t mention people with learning disabilities and their specific needs.
However, NICE is planning to develop guidelines under the title ‘Mental health problems in people with a learning disability’.
People with a learning disability alongside a schizophrenia diagnosis will often appear to experience ‘negative’ symptoms more acutely than ‘positive’ symptoms. These negative symptoms e.g. lack of motivation, lack of energy, loss of interest in others and themselves, loss of interest in their appearance, problems with memory and becoming withdrawn socially. These can seriously affect your quality of life. People with a diagnosis of schizophrenia on top of learning disabilities often need a lot of support.
The majority of people with learning disabilities will be treated in mainstream mental health services. Sometimes they are treated by community-based learning disability services.
Nevertheless, some mental health specialists might not understand their specific problems and complex needs of a person with a learning disability as well as a mental health problem. There may be difficulties with communication, for example. Also, if mental health specialists don’t have much experience with people with learning disabilities, they might not have the appropriate skills to make the correct diagnosis or to plan treatment effectively.
Some studies have shown that those who have learning disabilities are supported better when they are in specialist services that cater just for their needs. However, there hasn’t been a lot of research investigating what is best. Specialist services include units for inpatients as well as services that are community-based.
The research studies that have been conducted have shown that people who go into a specialist unit stay in hospital for longer than those who don’t have a learning disability. However, they are less likely to be discharged to a healthcare facility that is far from their home – a lot of people with learning disabilities and mental health problems are housed in specialist treatment centres that are a long way from their communities and families. Part of the package of care that a specialist unit offers will include planning a discharge to meet an individual’s needs when they have a learning disability and has experience psychosis symptoms.
Specialist services are often more appropriate for those people who have more severe learning difficulties or for those with very complex needs that can’t be met very effectively in the mainstream system where there are not as many professionals with the experience of working with those with learning disabilities.
A part of SLaM (South London and Maudsley) NHS Foundation Trust, the Estia Centre is working towards ensuring that people with a learning disability have their mental health needs met. They have specialist clinical services, a programme of education and training and carry out research for both mental health professionals and support workers.
The Centre has a dedicated team that is responsible for the organization of their large training portfolio that is offered as a matter of course to staff in mental health services and social care in south London. It is also available to staff that work in services across the UK as well as other countries when requested.