Call to action and research

In 2015, NHS England led a ‘call to action’ after reports from Public Health England, NHS Improving Quality and the Care Quality Commission showed that:

  • There is a much higher rate of prescribing of medicines used for mental illness amongst people with a learning disability than the general population, often more than one medicine in the same class, and in the majority of cases with no clear justification;
  • Medicines are often used for long periods without adequate review, and there is poor communication with parents and carers, and between different healthcare providers.

The call to action led to the setting up of the STOMP project led by NHS England and other partners.

As part of this work, NHS England has commissioned Public Health England to carry out four studies a year from the Spring of 2018. This follows on from the research carried out by Gyles Glover for Public Health England in 2015, to show if fewer psychotropics are prescribed as awareness of STOMP improves.

The study in 2015 found that 1 in 6 adults with a learning disability was being prescribed anti-psychotic drugs by their GP that are normally used to treat major mental illnesses. More than half of these adults did not have a recorded diagnosis of a condition they are designed to treat.

The report revealed that:

  • 17 per cent of adults with a learning disability known to their GP were being prescribed an antipsychotic.
  • more than half (58.1 per cent) did not have a diagnosis in their GP record of a condition which they are designed to treat, including psychosis, bipolar disorder, depression and anxiety
  • at any time, between 30,000 and 35,000 people with learning disabilities are prescribed an antipsychotic, an antidepressant or both by their GP without having the conditions for which the drugs were designed to treat and have been shown to be effective (this is 1 in every 6 people known to their GP as having a learning disability)

Gyles Glover, consultant in public health and co-director of the learning disabilities team in PHE said: ‘Psychiatric drugs are often given to people with a learning disability to try and manage challenging behaviour. These drugs have important side effects, but the evidence that they are effective is limited.

Services are overstretched and care is demanding, so we understand how the use of these drugs can be considered normal or necessary. However, the report suggests that psychiatric drugs are used more widely than is appropriate and this comes with risk. It is crucial that we build our evidence of what drugs are being used to manage behaviour and how often to support and guide a change in practice.

I very much welcome the initiative by NHS England to address this issue.’

Download ‘Prescribing of psychotropic medication for people with learning disabilities and autism‘.

The Care Quality Commission’s Survey of medication for detained patients with a learning disability has led to a work programme to equip inspection teams with the awareness, knowledge and tools to assess whether good prescribing practice takes place in services that CQC regulates.

Also in 2015, NHS Improving Quality published a full report on a pilot improvement project examining medicines practices and related matters in six sites across England which provide care for people with a learning disability.