Research commissioned by the health body and delivered in three reports from the Care Quality Commission, Public Health England and NHS Improving Quality has found that:
- There is a much higher rate of prescribing of medicines associated with mental illness amongst people with learning disabilities 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.
One of the reports, authored by Public Health England, estimates that up to 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification.
Dominic Slowie, NHS England’s National Clinical Director for Learning Disabilities, said: “This is a historic problem, but one that nobody knew the true scale of; that’s why we worked with patients, carers and professionals to get to the bottom of the issues once and for all.
“These medicines can be helpful when used appropriately and kept under review, but the prevalence and the lack of review or challenge that these reports have highlighted is completely unacceptable, and we are determined to take action to protect this group of patients from over-medication.”
In a letter (click here to read or also available in easy read) to professionals and patients, NHS England officials have urged the review of prescriptions, and promised to spearhead a “call to action” to tackle these problems, similar to that which has been so effective in reducing the inappropriate use of antipsychotics with dementia patients.
This will involve bringing together representatives of both professional and patient groups for an urgent summit on 17 July, at which an action plan and a delivery board will be established to drive the necessary changes.
NHS England are also considering issuing a patient safety alert to ensure that frontline clinicians and other health professionals are aware of the concerns, and have published information on their website for concerned patients and family members.
Commenting on the findings, Dan Scorer, Head of Policy at Mencap, and Viv Cooper, Chief Executive at the Challenging Behaviour Foundation said: "These research findings shine a light on the shocking scale of the inappropriate use of medication. It is simply outrageous that up to 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification. This confirms what we have heard from families time and time again about their loved ones being given high levels of antidepressant or antipsychotic medication, often for years. In many cases families report serious side effects and no evidence that the medication is helping the individual. They describe watching their relative becoming unrecognisable, e.g. extreme drowsiness.
"The research published today shows this is happening not just in inpatient units like Winterbourne View but in the community as well. Fundamental changes must now be delivered, addressing a widespread culture of ‘chemical restraint’, and replacing it with individualised behaviour support. We welcome the focus that has been announced today to ensure that action is taken to address the issues raised in this report."
While no specific research has been undertaken on the physical health implications of long-term use of such drugs on people with learning disabilities, past studies looking at patients with schizophrenia and dementia highlighted significantly increased risk of movement disorders, anticholinergic effects, stroke and death.