Guidance

Psychotropic drugs and people with learning disabilities or autism: introduction

Published 22 March 2019

© Crown copyright 2019

This publication is licensed under the terms of the Open Government Licence v3.0 except where otherwise stated. To view this licence, visit nationalarchives.gov.uk/doc/open-government-licence/version/3 or write to the Information Policy Team, The National Archives, Kew, London TW9 4DU, or email: psi@nationalarchives.gov.uk.

Where we have identified any third party copyright information you will need to obtain permission from the copyright holders concerned.

This publication is available at https://www.gov.uk/government/publications/psychotropic-drugs-and-people-with-learning-disabilities-or-autism/psychotropic-drugs-and-people-with-learning-disabilities-or-autism-introduction

This study examined prescribing of psychotropic drugs to people with learning disabilities, autism or both by general practitioners (GPs) in England. Following the study by Glover et al in 2015 [footnote 1] and various other evidences on the use of antipsychotic and antidepressant drugs for people with learning disabilities, autism or both, in 2016, NHS England launched a programme to reduce inappropriate prescribing of psychotropic medication to people with learning disabilities, autism or both. This was called stopping over medication of people with a learning disability, autism or both (STOMP) [footnote 2]. This study was commissioned by NHS England to see if a method to monitor the impact of the STOMP programme and to provide data about the extent of use of these drugs and any change over time, can be established.

The study focussed on the British National Formulary (BNF) [footnote 3] sections studied in Glover et al’s study [footnote 1]:

  • 4.1.1: hypnotics
  • 4.1.2: anxiolytics
  • 4.2.1: antipsychotic drugs
  • 4.2.2: antipsychotic depots
  • 4.3: all antidepressants and
  • 4.8: anti-epileptics

Following on from a recent study [footnote 4], we also included drug group 4.4 - CNS stimulants and drugs used for ADHD. We studied the extent and pattern of prescribing of drugs belonging to these drug groups.

This was a descriptive quantitative study using The Health Improvement Network (THIN) database. This is a large pseudonymised data set which draws data from GP practices which use the Vision software. It covers approximately 5% of the total population in the UK.

1. Background

1.1 Prescribing of psychotropic medications for people with learning disabilities

The extent of use of psychotropic medication, particularly but not exclusively, antipsychotics and antidepressants in people with learning disabilities has been an area of concern in academic literature for many years [footnote 5] [footnote 6] [footnote 7] [footnote 8]. In May 2011, the issue of the psychiatric treatment given to people with learning disabilities became an area of major public and political concern following a BBC Panorama programme which reported criminal, physical and psychological abuse of patients with learning disabilities and challenging behaviour at a private mental hospital, Winterbourne View. The Department of Health enquiry that followed looked widely at the whole subject of the care of people with learning disabilities or autism and mental health conditions or behaviours described as challenging [footnote 9]. Among many other findings the authors reported having heard ‘deep concerns’ about the overuse of antipsychotic and antidepressant medication. In response, the NHS chief pharmacist commissioned a number of studies to explore this further [footnote 1] [footnote 10].

Some people with learning disabilities are given psychotropic drugs for the treatment of the range of mental illnesses that occur in the population more widely. Research evidence has shown that most of these conditions are more common in people with learning disabilities [footnote 11]. In addition to this, many people with learning disabilities are given psychotropic drugs, mainly but not exclusively, antipsychotics or antidepressants in an attempt to manage problematic aggressive, self-destructive or repetitive stereotyped behaviours commonly termed challenging behaviours (CB). Whilst short term sedation can help with severe immediate behavioural crises, published reviews have found minimal support for the idea that antipsychotic medication has beneficial long term effect on CB [footnote 8] [footnote 12]. By contrast, the short and long term adverse effects of many of the drugs concerned are well known and in some cases severe and life changing. The National Institute for Health and Care Excellence (NICE) recently reviewed all the evidence about management of CB in people with learning disabilities [footnote 13]. They considered all the available evidence to be of low or very low quality. They advised that there was a place for use of antipsychotics in the management of CB, but that psychological and other interventions should be the first lines of treatment. Antipsychotics should only be considered when these had failed, when treatments for other physical or mental health problems had failed to alter behaviour or when risks to the individual or others from the behaviour were very severe.

One of the studies initiated by the NHS chief pharmacist identified the current prevalence of prescribing of 4 types of psychotropic drugs by GPs to people with learning disabilities, autism or both [footnote 1]. In adults with learning disabilities, antipsychotics were being prescribed to 17.1%, antidepressants to 16.9%, hypnotics to 2.6% and anxiolytics to 4.4%. The prevalence of antipsychotic use rose steadily with age, from 8.1% in people aged 18 to 24 to 26.7% in people aged 65 and older. 23% of people prescribed an antipsychotic and 11% of people prescribed an antidepressant were prescribed more than 1.67% of people prescribed antipsychotics and 59% of people prescribed antidepressants were also prescribed at least 1 other of the drug classes studied. In 5.5% of cases, doses of antipsychotics prescribed for regular administration exceeded BNF maximum recommended doses.

On the other hand, de Kuijper and Hoekstra [footnote 14] undertook a large study investigating physicians’ reasons not to discontinue long-term used off-label antipsychotics in people with a learning disability. Overall, physicians were willing to discontinue their prescriptions in 51% of cases, varying from 22% to 87% per service provider. The main reasons for decisions not to discontinue were concerns for symptoms of restlessness, the presence of an autism spectrum disorder, previously unsuccessful attempts to discontinue and objections against discontinuation of legal representatives.

1.2 Prescribing of psychotropic medications for autistic people

Prescribing of these medications for autistic people, is not studied as extensively as for people with learning disabilities. Substantial support needs have been identified in terms of health, education and social care for this group of people in the UK [footnote 15] [footnote 16], but very little is known about prescribing. Although there is no standard indication for treating people with autism spectrum disorder (ASD), they are prescribed psychotropic drugs [footnote 17]. This is particularly concerning because they are 11 times more likely to remain on it compared to non- psychotropic drugs [footnote 18] and much more likely to be exposed to polypharmacy [footnote 19] [footnote 20]. There is some evidence of decreased efficacy and adverse effects such as behavioural toxicity with tricyclic antidepressants; and social withdrawal and irritability with methylphenidate. However, very little is known about the long-term safety of these drugs.

A study using the same data source as ours investigated the use of pharmacological treatment among children, adolescents and young adults with ASD [footnote 21]. It reported that less than a third of individuals with ASD, were prescribed at least 1 psychotropic drug and around 34% were prescribed more than 1 psychotropic drug.

2. NHS England STOMP programme

In response to the findings from the study conducted by Glover et al [footnote 1], the then minister of state for social and community care, on the advice of the chief pharmacist and senior clinical leaders, initiated a call for action referred to as the STOMP programme [footnote 2]. A similar concern about the overuse of antipsychotic drugs in dementia had been addressed earlier. It resulted in a reduction of the number of people with dementia receiving a prescription of antipsychotics by 51.8% and an increase in reviews of antipsychotic prescribing in people with dementia [footnote 22]. The STOMP programme aimed to reduce inappropriate prescribing of psychotropic medication to people with learning disabilities, autism or both. The leaders of the programme stressed that the aim was not to deny the benefits of the drugs to patients with indications. Even though overall prescribing for adults with learning disabilities, autism or both is generally undertaken by their GP, it is not uncommon for them to receive advice about their care from more than 1 specialist [footnote 23]. The programme has involved a whole range of partners such as healthcare providers, social care and other professional organisations including but not limited to, the Royal Colleges of Nursing, Psychiatrists and GPs, Royal Pharmaceutical Society and British Psychological Society.

The programme has various work streams such as pledges and commitments from the key stakeholders and drivers such as the Royal College of Nursing, Psychiatrists and GPs, Royal Pharmaceutical Society, British Psychological Society, NHS England, etc. It also involved pledges from social care organisations such as the Voluntary Organisations Disability Group (VODG) and pledges from healthcare providers. The programme also worked with several organisations to raise awareness and to ensure that the right training material is available for the workforce. In addition, various levers and resources were identified to encourage its implementation - for example, standards and recommendations developed by the Care Quality Commission (CQC), evidence-based resources and tools developed by primary care commissioners developed by PrescQIPP, an organisation responsible for providing support information for GPs and pharmacists. Moreover, co-production was a key principle of the programme and hence, it involved self-advocates and carers.

2.1 Data source

There is no single available source of information where all the relevant prescribing of medication is recorded. Broadly, prescribing for people is either done in hospitals by secondary care doctors, or in primary care by GPs. Glover’s 2015 study [footnote 1] demonstrated that of adults with learning disabilities, only around 2% are in hospital at any time. On this basis, whilst not perfect, a study of the prescribing undertaken by GPs is likely to give the most representative view of care in the population. This study is an initial approach to monitor changes in GP prescribing during the second and third years of the STOMP programme. It may be that at the end of this programme a requirement for longer term, fully localisable monitoring will be apparent. In this case the study should also guide the design of this. At present there are 2 possible ways in which GP records can be studied on a large scale to monitor prescribing patterns: research databases or national routine data extractions through the General Practice Extraction Service (GPES). The research database approach, is far simpler, can be set up in a few months as opposed to 1 to 2 years, and can provide retrospective data. Its weakness in comparison to the GPES approach is that it cannot provide local data.

From the perspective of prescribing by GPs, the Health Improvement network (THIN) provide data of a comparable scope and size to Clinical Practice Research Database Gold (CPRD Gold), the source used for Glover et al’s initial study [footnote 1].

THIN was set up in 2002. Like CPRD Gold, it draws on clinical records from practices using Vision software that cover about 5% of the population of UK. Data is collected without interruption to the running of the GP’s system. This pseudonymised data is then sent to Cegedim, the owners of THIN, who then supplies this data under license to IQVIA to make it available to researchers. Whenever a practice joins THIN, an initial Full Data Collection (FDC), which includes all retrospective data, is collected by THIN. Following this, Incremental Data Collections (IDCs) are collected daily. As of January 2017, THIN dataset contained data from over 711 practices. Of the total 15.6 million patients it accounted for, just over 3 million patients were currently registered with active practices and can therefore could be prospectively followed [footnote 24]. The remaining patients had historic data but had either left the practice or died or their practice had stopped contributing data.

THIN data have been shown to be generally representative of the UK in terms of age and gender comparisons, and Quality and Outcomes Framework (QOF) chronic disease prevalence [footnote 25]. Data quality is regularly monitored. On a regular basis, THIN sends the results of ongoing THIN data validation analyses in the form of a feedback report to practices. The aim of the feedback is to alert practices to data that would be expected but has not been recorded. Thus, the quality of data could also be expected to improve over time.

THIN data includes records of demographic information, prescription details, diagnoses and lifestyle and preventative healthcare measures such as height/weight measurements, smoking and alcohol status, immunisation and lab test results.

The 3 core elements of this study in terms of data were:

  • identifying people in the group relevant to the study
  • identifying their prescription details
  • identifying relevant diagnoses for drug indications

This data source is well suited to address all these. It draws information from the GP system and GPs are required to maintain registers of people with learning disabilities under the QOF. QOF provides incentives for GPs to maintain registers as well as provide them with mandatory coding details. Thus, it is relatively easy to identify patients of interest. Prescribing in terms of GP prescriptions, is particularly well recorded in THIN since the data sets were primarily designed for pharmaco-epidemiological studies. The computerised entry made by the doctor is also used as the prescription form with a copy being printed for the patient to present at the pharmacy or the prescription can be sent electronically to the pharmacy using the Electronic Prescribing System (EPS). This computerised prescribing creates therapy records in the database. For the diagnoses codes for licensed indications of drugs in this study, QOF registers cover many of these conditions such as depression, psychotic illness and epilepsy.

3. Aims and objectives

The aim of the study was to establish a method for monitoring trends and patterns in prescribing rates in people with learning disabilities, autism or both, in the period following the launch of the STOMP programme.

The study analysed trends in the following aspects of the psychotropic drug groups of interest:

  • prescribing rate
  • prescribing based on indications
  • patterns of prescribing:
    • prescribing of more than 1 drug from the same drug group
    • prescribing of more than 1 drug group
    • antipsychotic drugs prescribed in excess of the BNF recommended maximum dosages
    • inceptions and terminations of prescribing episodes

4. References

  1. Glover G., Williams R., Branford, D., Avery, R., Chauhan, U., Hoghton, M. and Bernard, S. Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England. Public Health England. (2015). Available at: http://webarchive.nationalarchives.gov.uk/20160704152031/https://www.improving healthandlives.org.uk/publications/1248/Prescribing_of_psychotropic_medication _for_people_with_learning_disabilities_and_autism [Accessed 27 Nov. 2018] ↩ ↩2 ↩3 ↩4 ↩5 ↩6 ↩7

  2. NHS England. Stopping over medication of people with a learning disability, autism or both (STOMP) (2016). Available at www.england.nhs.uk/learning-disabilities/stomp/ [Accessed 27 Nov. 2018] ↩ ↩2

  3. Joint Formulary Committee. British National Formulary. 73 ed. London: BMJ Group and Pharmaceutical Press; 2017 ↩

  4. Sheehan R, Hassiotis A, Walters K, et al. Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ. 351: h4326 (2015). Available at www.bmj.com/content/351/bmj.h4326 [Accessed 27 Nov. 2018] ↩

  5. Branford D. A study of the prescribing for people with learning disabilities living in the community and in National Health Service care. J. Intellect. Disabil. Res; 38:577–86 (1994). ↩

  6. Deb S, Kwok H, Bertelli M, et al. International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry. 8:181–6 (2009) ↩

  7. Matson,J.L. et al. Psychopharmacology and mental retardation: a 10 year review (1990- 1999). Res. Dev. Disabil. 21, 263-296 (2000) ↩

  8. Matson, J.L. & Neal, D. Psychotropic medication use for challenging behaviors in persons with intellectual disabilities: an overview Res. Dev. Disabil. 30, 572- 86 (2009) ↩ ↩2

  9. Department of Health. Transforming Care: A National Response to Winterbourne View Hospital. (Department of Health, Ed.). London (2012). Available at https://assets.publishing.service.gov.uk/government/uploads/system/uploads /attachment_data/file/213215/final-report.pdf [Accessed 27 Nov. 2018] ↩

  10. Care Quality Commission. Survey of medication for detained patients with a learning disability. Newcastle upon Tyne (2016). Available at https://www.cqc.org.uk/sites/default/files/20160209-Survey_of_medication_for_detained_patients_with_a_learning_disability.pdf [Accessed 27 Nov. 2018] ↩

  11. Cooper, S. A., Smiley, E., Morrison, J., Williamson, A. & Allan, L. Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. Br J Psychiatry 190, 27–35 (2007). ↩

  12. Brylewski, J., & Duggan, L. Antipsychotic medication for challenging behaviour in people with learning disability (Review) (2009). Available at http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD000377.pub2/pdf [Accessed 27 Nov. 2018] ↩

  13. NICE. Guideline development group and National Collaborating Centre for Mental Health review team. Challenging Behaviour and Learning Disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges (2015). Available at www.nice.org.uk/guidance/ng11 [Accessed 27 Nov. 2018] ↩

  14. de Kuijper GM and Hoekstra PJ. Physicians’ reasons not to discontinue long-term used off-label antipsychotic drugs in people with intellectual disability. J Intellect Disabil Res. 61(10):899-908 (2017) ↩

  15. Knapp M, Romeo R, Beecham J. Economic cost of autism in the UK. Autism 13(3):317–336 (2009) ↩

  16. Barrett et al; PACT Consortium. Service and wider societal costs of very young children with autism in the UK. J Autism Dev Disord 42(5):797–804 (2012) ↩

  17. Broadstock M, Doughty C, Eggleston M. Systematic review of the effectiveness of pharmacological treatments for adolescents and adults with autism spectrum disorder. Autism 11(4):335–348 (2007) ↩

  18. Esbensen AJ, Greenberg JS, Seltzer MM, Aman MG. A longitudinal investigation of psychotropic and non-psychotropic medication use among adolescents and adults with autism spectrum disorders. J Autism Dev Disord 39(9):1339–1349 (2009) ↩

  19. Logan SL, Nicholas JS, Carpenter LA, King LB, Garrett-Mayer E,Charles JM. High prescription drug use and associated costs among Medicaid-eligible children with autism spectrum disorders identified by a population-based surveillance network. Ann Epidemiol 22(1):1–8 (2012) ↩

  20. Frazier TW, Shattuck PT, Narendorf SC, Cooper BP, Wagner M, Spitznagel EL. Prevalence and correlates of psychotropic medication use in adolescents with an autism spectrum disorder with and without caregiver-reported attention-deficit/hyperactivity disorder. J Child Adolesc Psychopharmacol 21(6):571–579 (2011) ↩

  21. Murray et al. Pharmacological treatments prescribed to people with autism spectrum disorder (ASD) in primary health care. Psychopharmacology 231(6):1011- 1021 (2014) ↩

  22. Health and Social Care Information Centre (HSCIC) (2012), “National Dementia & Antipsychotic prescribing audit 2012” (2012). Available at www.rcpsych.ac.uk/pdf/nati-deme-anti-pres-audi-summ-rep.pdf [Accessed 27 Nov. 2018] ↩

  23. David Branford, Anne Webster, Carl Shaw, David Gerrard, Nigget Saleem, Stopping over-medication of people with an intellectual disability, autism or both (STOMP) in England part 2 – the story so far, Advances in Mental Health and Intellectual Disabilities (2018). Available at https://doi.org/10.1108/AMHID-02-2018-0005 [Accessed 27 Nov. 2018] ↩

  24. Quintile IMS. THIN Data Guide for Researchers. 1701:1- 105 (2017) ↩

  25. Blak BT, Thompson M, Dattani H, Bourke A. Generalisability of The Health Improvement Network (THIN) database: demographics, chronic disease prevalence and mortality rates. Inform Prim Care 19:251-5 (2011) ↩

Back to top