This article demonstrates an exciting new role for pharmacists in delivering meaningful medication optimisation to improve quality of life for vulnerable people with a learning disability and autism
Stopping over-medication of people with a learning disability, autism or both (STOMP) is a project supported by NHS England and aimed at reducing the inappropriate prescribing of psychotropic medication to manage behaviour that is deemed to be challenging often in the absence of a documented mental health diagnosis.1–4
The project began in 2016 after the publication of the report into the Winterbourne View care home, which highlighted concerns related to the use of medication in this way.5 The project had an initial brief to run for three years to raise awareness of the issue and to engage relevant organisations to implement plans to challenge this practice. The primary aims were linked to quality of life improvements through focused and holistic medication reviews and challenge to inappropriate or over-prescribing of medication. In 2019, the project aims were incorporated in to the NHS 10-year plan.6
The extent of over-prescribing was highlighted by a report published by Public Health England,7 which showed that 30,000–35,000 prescriptions are issued each day to people with a learning disability and/or autism for psychotropic medication who do not have a diagnosis of a serious mental illness. Further analysis identified that people with a learning disability are twice as likely as the general population to receive a psychotropic medication.8
The NHS England STOMP awareness programme culminated in a series of pledges for all health and social care providers, Royal Colleges and professional bodies. The commitments detailed in each pledge have similar themes irrespective of expertise ensuring a collaborative approach to STOMP (Figure 1).
Historically, little guidance has been available to guide the appropriate use of psychotropic medication,9–11 and less guiding how this medication may be challenged and safely removed if no longer indicated.12–15
There is no available literature detailing how a pharmacist can be utilised to lead this work.
In 2015, the National Institute for Health and Care Excellence published guidance (NG11) detailing how behaviours that challenge should be more appropriately managed utilising non-pharmacological measures first, introducing medication as additional second-line intervention.16 The guidance also stipulated how medication should be initiated, monitored, reviewed and questioned placing an emphasis on the prescriber to detail how the medication could be challenged and removed.
NICE NG11 describes the principles of positive behavioural support (PBS) as the preferred non-pharmacological intervention, which aims to improve quality of life for the individual and their circle of support.17,18
Historically within the Trust, a pharmacist had never been employed as a member of a community treatment team and did not form part of the workforce plan linked to the transforming Care Agenda laid out in the Building the Right Support document.19 Our Trust led the way in delivering
a unique, collaborative, pharmacist-led clinic that focused on delivering STOMP in line with the principles of NICE guidance.
The pharmacist became part of two Learning Disability Community Treatment Teams (LDCTT) in Sunderland and Newcastle focusing on supporting the wider multidisciplinary team (MDT) with prescribing decisions and medicines optimisation work. One aspect of the role was to develop a STOMP clinic and for the pharmacist to deliver STOMP medication challenge.
The pharmacist developed two processes for the clinic: one supported by PBS behavioural experts, for more complex patients; and one unsupported
for those patients felt to have less challenging presentations and a stable living environment. In Sunderland, the pharmacist and PBS team developed a PBS-STOMP clinic that delivered challenge through adherence to the principles of NICE NG11 and the STOMP pledge commitments (see Figure 2).
People were identified by PBS nurses who had worked to understand the function of a person’s behaviour and to produce interventions for carers to implement to keep a person safe. They also highlighted psychotropic medication use that appeared inappropriate and educated the care team/family to understand the person’s behaviour in a different way. This allowed a degree of education about STOMP and medication challenge before referral for the reduction work to commence.
Once referred, the pharmacist worked collaboratively with the PBS nurse to begin a cautious challenge to medication, meeting on several occasions to review medication changes. The work was guided by the opinions of the person, carers and family together with behavioural data collated by the care team and PBS nurse. This ensured a degree of evidence-based decision making as opposed to personal opinion in the clinic unsupported by PBS nurses.
The collaborative nature of the PBS-STOMP clinic meant that all healthcare professionals could be involved and had a role in delivering STOMP, as well as the opinions of carers and family members together with the person taking the medication. This ensured all aspects of a person’s life (such as mobility, communication, swallowing difficulty and sensory awareness) were included in the review. It was this element of the work that appeared to be unique and allowed the team to include and engage with people, carers and family in a different way. It was important to factor in this approach given the concerns and anxiety raised by initial suggestions to remove often very long-standing medications.
Once in the clinic, people met with the team every 6–8 weeks for a review that was focused on quality of life, level of engagement, behavioural data, environmental factors within the care setting as well as physical health and lifestyle wellbeing (Figure 3).
In the unsupported model, the principles and processes were identical without the direct support and behavioural data of PBS experts. The pharmacist led all reviews and decision-making without behavioural evidence, relying on the opinion of the person and their care team.
Figure 4 details the results of medication reviews and the number of clients within the clinic together with the changes to their medication. It also highlights the different rates of success between the two clinic models. In total, 66 people have received a STOMP challenge, with 24 psychotropic medications being stopped; 20 of these were with PBS support. A further 22 people are undergoing the challenge which is not yet complete. Ten medications needed to be restarted post-discontinuation or increased post-reduction, with eight being in the unsupported clinic. On average, each person required a minimum of five reviews to fully undertake the challenge.
The types of medication are shown in Figure 5.
The majority of medications stopped are antipsychotics, as reflected in NICE guidance, which only supports the use of antipsychotics for behavioural management. Over half these prescriptions were for risperidone, which reflects the clinical practice that this antipsychotic was the preferred choice in behavioural intervention.
Side effect burden reduced by 71% with a reduction of 50% of the starting dose or more. The main issues that improved were sedation, weight gain and postural hypotension. Many of the prescriptions had historically been for risperidone, and improvement in hyperprolactinaemia, often risperidone-induced, is shown in Figure 6.
The clinic has been promoted as a model of care through a range of publications and showcased at several conferences. Figure 7 shows the extent of the spread to other secondary care providers, Clinical Commissioning Groups and GP practices. The clinic was also promoted to two local family forums and a number of self advocates, people with a learning disability, autism or both who also act as a ‘confirm and challenge group’ for service development. This wider collaborative is enshrined in the STOMP pledge for health and social care providers.
The results highlighted in Figure 4 show the impact of the role of the pharmacist in delivering STOMP medication reviews in line with NICE guidance and the STOMP healthcare pledge principles. It is a unique and collaborative approach to service delivery developed by the pharmacist with members of the wider MDT. The rates of discontinuation, especially with PBS support, show how beneficial this collaboration is to the final outcome (90% of the people who stopped medications have remained drug free when supported by PBS).20 Historically the best rate of successful discontinuation had been between 37% and 40%.12–15 None of these studies included behavioural support, although Ahmed et al went on to highlight the environmental and staff factors that may need to be considered to ensure the work is more successful.12 The PBS-STOMP clinic approach incorporates these factors and led to the higher rates of deprescribing success with full PBS support compared with that without scaffolding. This was an important finding when promoting the clinic process to other interested parties. It also underpins how the STOMP process may be adapted and extended in the future. Given that this work is confined to secondary care teams, it is imperative to ensure the principles are shared by specialists as primary care discusses how STOMP will be delivered through the emergent networks.
There is a widely held belief that people who are solely under the care of GPs will be less complex and might not need the level of support provided by PBS practitioners. The clinic promotes the concept that the collaboration will be more effective and safer for everyone.
Advice, guidance and direction from secondary care pharmacists and behavioural experts will be key to successful and safe service development and delivery in line with the principles of the NHS 10-year plan, which supports wider adoption and spread of STOMP.
The type of medications stopped shown in Figure 6 included several psychotropic agents, primarily focused on antipsychotics. This was deliberate as it is only the antipsychotics that are part of the NICE NG11 guidance. The work can expand into other agents such as antidepressants, anxiolytics and mood stabilisers.
It is important to showcase deprescribing success and to share examples of the work) to boost confidence and learn lessons related to the process.21 A report by Public Health England in 2019 showed little change in the rates of psychotropic prescribing between 2015 and 2019, the lifespan of the STOMP project.22 This was explained by the project being a ‘call to action’ and awareness-raising agenda rather than a focused medication challenge. This clinic showcases how the principles can translate into successful deprescribing action and quality of life improvement through utilising a safe and collaborative process led by a pharmacist prescriber.
The reduction in side effects shown in Figure 6 was evidenced when medication dosage was reduced by 50% or more, rather than full discontinuation. Even a partial challenge can improve side-effect burden by up to 70%, focused on removing sedation, weight gain and dizziness. As a person becomes less sedated and more driven to engage in meaningful activity, it is imperative that this growing need is met by greater staff and family/care interaction. This is where PBS education is key to ensuring the person is engaged in a more meaningful way enabling greater success of medication challenge.
The PBS-STOMP clinic has been widely recognised as a model of good practice, being awarded a NICE shared learning example in 2017.23 It has been widely shared through conferences such as the Clinical Pharmacy Congress 2019 and the College of Mental Health Pharmacy 2019. The pharmacist is aware that other models and processes could also deliver STOMP, particularly as the project begins to be adopted in several locations. The clinic has been visited by a number of pharmacists and nurse prescribers from other NHS Trusts who are considering a similar model of STOMP delivery. In June 2019, it received its first overseas visitor, a pharmacist from Finland who was interested in setting up a STOMP clinic.
It is important that all pharmacist STOMP practitioners form a close network to share good practice and experience. The next stage of the STOMP agenda is to consider people not currently known to secondary care teams and are cared for in their own homes by primary care practitioners. It is important to consider how secondary care STOMP pharmacist specialists can support the newly developing primary care networks (PCN) to ensure the work is continued in a safe and effective manner by GPs and PCN pharmacists, supported by specialists.
Reflection and conclusions
This role has been the most rewarding and challenging in my long and varied career. Being given the accountability to look after vulnerable people and to strive to improve their quality of life is a most humbling experience. It exposes the pharmacist to a level of risk management in a manner that previously has not been experienced within a role, and building a wide-ranging support network has been key to ensuring personal strength and wellbeing.
The work could not have happened without the support of a forward-thinking pharmacy department and other healthcare professionals within the Trust who wanted to maximise the opportunity to work differently. The work has led to the development of two additional specialist STOMP pharmacists and clinics within the Trust who are also acting as independent STOMP practitioners in different community teams.
This showcases the expanding role and future opportunities that all pharmacists can consider and access. Pharmacists are now at the forefront of service development and collaborative working within the Trust, which has provided the opportunity that the profession has required. This model can be utilised, developed and progressed within all secondary care organisations, both NHS Trusts and the private sector, and opens up dialogue of much-needed integration with primary care colleagues.
With interest from other parts of Europe, it is a principle that extends beyond national boundaries as good pharmaceutical practice is shared to a wider audience. It also opens a wider research potential as the work expands and more information becomes available to help shape and progress the initial work showcased in this article. The next 5–10 years will be critical for the profession and very exciting for all pharmacist practitioners involved in the care of people with a learning disability, autism or both, when delivering STOMP in primary care and supporting pharmacy colleagues in primary care.
- STOMP represents an exciting opportunity for pharmacists to showcase their knowledge and skills to successfully challenge potentially over prescribed and inappropriate psychotropic medications.
- STOMP is best delivered as a collaboration between the pharmacist and multiple healthcare professionals to ensure safe and effective deprescribing guided by behavioural data and quality of life improvement measures.
- Secondary care pharmacist experts in learning disability and autism are key to delivering STOMP in community teams and in-patient settings within specialist NHS Trusts and private healthcare providers.
- STOMP is about inclusion and partnership working with people with a learning disability and autism together with their family and care teams. Pharmacists are best placed to educate people about the STOMP agenda and to reach out to include everyone in STOMP service development.
- Pharmacists with expertise in STOMP within secondary care should develop close working relationships with colleagues in medicine optimisation teams and the newly developing Primary Care Networks. This will ensure the specialist expertise is available to support primary care colleagues to safely deliver STOMP.
- Branford D et al. Stopping over-medication ofpeople with an intellection disability, Autism or both (STOMP) Part 1 – history and background of STOMP. AMHID 2018;13:31–40.
- Branford D et al. Stopping over-medication of people with an intellectual disability, Autism or both (STOMP) Part 2 – the story so far. AMHID 2018;13:41–51.
- NHS England. Stopping over-medication of people with an intellection disability, Autism or both (STOMPLD) pledge. www.england.nhs.uk/2016/06/over-medication-pledge (accessed January 2020).
- NHS England. Stopping over-medication of people with a learning disability (STOMPLD). www.england.nhs.uk/wp-content/uploads/2016/06/stopping-over-medication.pdf (accessed January 2020).
- Department of Health. Transforming care: a national response to Winterbourne View Hospital. www.gov.uk/government/publications/winter bourne-view-hospital-department -of-healthreview-and-response (accessed January 2020).
- NHS England. The NHS Long Term Plan. www.longtermplan.nhs.uk/wp-content/uploads/ 2019/01/nhs-long-term-plan.pdf (accessed January 2020).
- Public Health England. Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England. http://clok.uclan.ac.uk/17970/1/Psychotropic%20medication%20and%20people%20with%20learn ing%20disabilities%20or%20au tism.pdf (accessed January 2020).
- Sheehan R et al. Mental illness, challenging behaviour and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ 2015;351:h4326.
- Tyrer P et al. Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trial. Lancet 2008;371:57–63.
- Deb S et al. The effectiveness of antipsychotic medication in the management of behaviour problems in adults with intellectual disabilities. J Intellect Disabil Res 2007;51:766–77.
- Deb S et al; Guideline Development Group of the WPA Section on Psychiatry of Intellectual Disability. International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry 2009;8:181–6.
- Ahmed Z et al. Reducing antipsychotic medication in people with a learning disability. Br J Psychiatry 2000;176:42–6.
- Branford D. Factors associated with the successful or unsuccessful withdrawal of antipsychotic drug therapy prescribed for people with learning disabilities. J Intellect Disabil Res 1996;40:322–9.
- de Kuijper G et al. Effects of controlled discontinuation of long-term used antipsychotics for behavioural symptoms in individuals with intellectual disability. J Intellect Disabil Res 2014;58:71–83.
- de Kuijper G et al. Effects of discontinuation of long-term used antipsychotics on prolactin and bone turnover markers in patients with intellectual disability. J Clin Pharmacol 2014;34:157–9.
- National Institute for Health and Care Excellence. Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. NICE Guideline 11. www.nice.org.uk/guidance/ng11 (accessed January 2020).
- Gore NJ et al. Definition and scope for positive behavioural support. Int J Positive Behav Supp 2013;3:14–23.
- Chaplin J et al. Improving the quality of behavioural support plans through service development initiatives. Int J Positive Behav Supp 2014;4:14–23.
- NHS England. Building the right support. www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf (accessed January 2020).
- Gerrard D et al. Using positive behavioural support (PBS) for STOMP medication challenge. AMHID 2019;13(3/4):102–12.
- Lee RM et al. Positive behavioural support as an alternative to medication. Tizard Learning Disability Rev 2018. https://doi.org/10.1108/TLDR-06-2018-0018.
- Public Health England. Psychotropic drugs and people with a learning disability or autism. www.gov.uk/government/publications/psychotropic-drugs-and-people-with-learning-disabilities-or-autism/psychotropic-drugs-and-people-with-learning-disabilities-or-autism-executive-summary (accessed January 2020).
- National Institute for Health and Care Excellence. Adhering to the NICE guidance for initiating and reviewing antipsychotic medications in people with a learning disability for the prevention and intervention of challenging behaviours. www.nice.org.uk/sharedlearning/adhering-to-the-nice-guidance-for-initiating-and-reviewing-antipsychotic-medications-in-people-with-a-learning-disability-for-the-prevention-and-intervention-of-challenging-behaviours (accessed January 2020).