Rory Sheehan and Angela Hassiotis report on a study of GP records which revealed a worrying number of people with learning disabilities being prescribed antipsychotic medications.
Behaviour that challenges and antipsychotic medication use
Aims: The purpose of the study was to investigate the extent of antipsychotic drug use to address ‘behaviour that challenges’ in people with learning disabilities across the UK.
Methods: GP care records for over 33,000 people with learning disabilities from around the UK were looked at to see how many had a diagnosis of mental health problems, how many were recorded as having ‘behaviour that challenges’, and how many had been given antipsychotic medications.
Many people with learning disabilities lead active and fulfilling lives. However, some present with behaviours which may cause harm or stop them doing the things they want to do – this is often known as ‘behaviour that challenges’. It might include aggression, hurting oneself, or causing damage, and it has an impact on the person and those around them. There could be several reasons for this – the person may be unwell and in pain, they might be frustrated because they are not being listened to, or they might not be getting the right support where they live. Of course, these different causes require different responses and support.
Sometimes antipsychotic drugs used to treat serious mental ill health have been given to people with learning disabilities who have ‘behaviour that challenges’ even when they do not have mental health problems, despite little evidence that these drugs are helpful when used for this reason. Antipsychotic medications can cause unwanted side-effects, like movement problems, sleepiness, and weight gain, and people with learning disabilities seem more sensitive to side-effects than other groups of people.
The National Institute for Health and Care Excellence (NICE) has produced guidelines that advise professionals on how best to assess and manage ‘behaviour that challenges’. These guidelines recognise the complexity of such problems and state that a team of professionals should be involved in helping people. A variety of management approaches should be considered and antipsychotic medication should be used only when the situation is likely to increase risk of harm to the person or those around them, or when other strategies have failed.
Our main findings were:
- Just over one in three people with learning disabilities had a GP record of ‘behaviour that challenges’.
- A quarter of people with learning disabilities had been given antipsychotic medication.
- Most people who were given antipsychotic medication did not have a record of a serious mental health problem that the antipsychotics are designed to treat.
- People with ‘behaviour that challenges’ were over twice as likely to be prescribed antipsychotic medication.
More people with learning disabilities than we expected were recorded as having ‘behaviour that challenges’. This highlights the need for health and social care teams to provide a responsive and effective service for this group of people. Because such behaviours can turn into crisis situations, it is important that ways of responding outside working hours are available and easily accessible.
Our findings about antipsychotic medication use seem to confirm the worry that medication is sometimes being used when it might not be necessary and may be causing harm. The study cannot tell us why this is. It could be that antipsychotic medication is helpful for some people who have ‘behaviour that challenges’. Alternatively, it might be that medication is being used because other forms of treatment, like working with a psychologist or behaviour specialist, are not readily available or have not been effective.
It is sign that things are changing that the number of people with learning disabilities prescribed antipsychotic medication has fallen gradually over the past 15 years but there is still room for improvement.
Many people with learning disabilities have been taking antipsychotic drugs for ‘behaviour that challenges’ for a long time, often many years. It is understandable that they might be reluctant to stop this medication and be worried about the effect this will have.
We have looked at the scientific evidence and found it to be of poor quality, which means it is difficult for doctors to advise people. Some people seem to do well when their antipsychotic medication is reduced or stopped, but a roughly equal number of people get worse and may need to restart the medication – we can’t predict who these people will be so there are no easy answers.
It is always important to discuss medication changes with a doctor. Each person must be treated as an individual and there should be a thorough assessment of a person’s health and their past and current difficulties. The views of people with learning disabilities and their relatives or carers must also be taken into account.
To make it easier for doctors and people with learning disabilities to make sure they are getting the right medications at the right time we have planned a programme of work to develop a review tool that will support decision-making about medication and empower people with learning disabilities to be actively involved in their care.
- Antipsychotic medications might be being over-used in people with learning disabilities, especially in people who also have ‘behaviour that challenges’, and some people have been on these drugs for many years.
- People with behaviour that challenges need access to a range of treatments, not just medication.
- Evidence on the effects of stopping taking these drugs is poor – some people with learning disabilities seem to do well but a roughly equal number of people get worse when they stop taking them.
- A review tool is being developed by University College London that will help people with learning disabilities to be involved in decisions about medication.
Sheehan, R., Hassiotis A., Walters, K., Osborn, D., Strydom, A., Horsfall, L (2015). Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ 351:h4326
National Institute for Health and Care Excellence. Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges (2015). NICE
Rory Sheehan is an NIHR Research Fellow and Angela Hassiotis is Professor of Psychiatry of Learning Disability at University College London.