People with learning disabilities need a ‘bill of rights’ to protect them from medicines misuse

The events at Winterbourne View in 2011 shocked the nation. A BBC Panorama investigation discovered abuse at a private centre that specialised in caring for people with learning disabilities and challenging behaviours.

I believe the investigations that followed reveal an urgent need for a ‘call to action’ to reduce the current use of psychotropic medicines and a ‘bill of rights’ to protect people with learning disabilities when such medicines are used.

Although the concerns at Winterbourne centred primarily on mistreatment of residents and the placement of problematic patients far away from their homes, various investigations that followed have also found issues with the use of medicines in people with learning disabilities.

An example is the census from the Health and Social Care Information Centre (HSCIC) in April 2014 [PDF] that found two thirds (68.3%) of patients with learning disabilities had recently been given an antipsychotic medicine. This was widely regarded as further evidence of inappropriate medicines use. Further studies into these issues are due for publication soon.

Little progress

People with learning disabilities commonly suffer from a variety of conditions that require access to and involvement of specialists from a number of medical specialisms. This results in the prescribing of many medicines, as one would expect.

However, in addition, these patients are commonly prescribed psychotropic medicines, usually to manage ‘challenging behaviours’. Although the focus has been on antipsychotic medicines, the Winterbourne View investigations raised concerns about all the other categories of psychotropic medicine, such as antidepressants, mood stabilisers, stimulants and benzodiazepines. Medicines of all kinds, but particularly psychotropic medicines, can be misused.

Ultimately, these issues have highlighted a need to strengthen the mechanisms that provide review and oversight of pharmaceutical care in these patients.

In 2014, NHS England asked Sir Stephen Bubb, head of the Association of Chief Executives of Voluntary Organisations, to lead a review of how a new national framework of support might be delivered locally to allow the growth of community provision required to move people out of inappropriate institutional care.

Although his remit did not cover medicines issues, Sir Stephen concluded that three years on there had been little progress in this area and more people continue to be admitted to institutions than are being discharged.

His report sets out a roadmap for action. His recommendations include a ‘Charter of rights’ for people with learning disabilities or autism and their families, and a right to challenge decisions.

He also proposes a requirement for local decision-makers to follow a mandatory framework that sets out who is responsible for which services and how they will be held to account, including improved data collection and publication. He called for better training and education for NHS, local government and provider staff.

Should we not be thinking the same way about medicines use in people with learning disabilities and possibly other vulnerable groups — to enshrine in law some basic rights about how medicines are used?

From ‘should’ to ‘must’

I believe such rights should be similar to NICE’s recent recommendations on care homes and on the management of challenging behaviours in learning disabilities. However, I recommend a change to the language from ‘should’ to ‘must’. I believe all people with learning disabilities must have a protected right to medicines reviews. The frequency of planned medicines reviews must be recorded in the care plan. The interval between medicines reviews must be no more than one year and more frequently if on psychotropic medicines.

Medicines reviews in primary care must be a part of health screening that GPs carry out and facilitated by a pharmacist. The pharmacist responsible for medicines reviews must have accredited clinical experience with learning disabilities.

These reviews must involve the resident or their family members or carers and a local team of health and social care practitioners. In addition to the accredited pharmacist, there ought to be a specialist nurse, such as a community psychiatric nurse, a psychiatrist, if involved, a GP and a carer.

Lastly, the prescribing of psychotropic medicines must be for a defined and rational reason and must be stopped unless benefit can be proved.

In order to correct the current problem, we need a ‘call to action’ similar to that for people with dementia who are prescribed antipsychotic medicines. Ultimately, though, a bill of rights mandating comprehensive medicines reviews by accredited pharmacists for all vulnerable people must be the goal. The case for starting with people with learning disabilities is strong. There is more than enough evidence of poor medicine use — now is the time for action.