Learning disabilities – medicines optimisation support

A CPPE workshop

CH/LEADIS3/PWMay 2021

Pre-workshop book

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Lead writerDave Gerrard, learning disability pharmacist, Northumberland, Tyne and Wear NHS Foundation Trust

CPPE programme developer(s)Helen Middleton, deputy lead, general practice pharmacist training pathway Sneha Varia, education supervisor, general practice pharmacist training pathway

Reviewer(s)Nigget Saleem, Bury clinical cabinet lead – learning disabilities Steve Buckley, senior clinical pharmacist, older adult services, Greater Manchester West Mental Health NHS Foundation Trust The programme developer would like to give special thanks to Emma Anderson, programme developer for the CPPE Learning disabilities distance learning programme, for her support in the development of this learning set.

CPPE reviewer(s)Chris Cutts, director Lesley Grimes, lead pharmacist learning development Matthew Shaw, deputy director

Piloted byJoanne Nevinson, education supervisor

EditorBethan Wilkes, assistant editor, CPPE

Brand names and trademarksCPPE acknowledges the following brand names and registered trademarks mentioned throughout this programme: Post-it®, EMLATM, Priadel®.

DisclaimerWe have developed this learning programme to support your practice in this topic area. We recommend that you use it in combination with other established reference sources. If you are using it significantly after the date of initial publication, then you should refer to current published evidence. CPPE does not accept responsibility for any errors or omissions.

External websitesCPPE is not responsible for the content of any non-CPPE websites mentioned in this programme or for the accuracy of any information to be found there.

All web links in this resource were accessed in May 2021.

Published in May 2021. Originally published in March 2019 by the Centre for Pharmacy Postgraduate Education, Division of Pharmacy and Optometry, The University of Manchester, Oxford Road, Manchester, M13 9PT.www.cppe.ac.uk

ProductionTypeset by Servis Filmsetting Ltd, Stockport, Cheshire

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© Copyright controller HMSO 2021

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ContentsLearning with CPPE 4

About this CPPE workshop resource 5

Learning objectives 7

Background reading – setting learning disability in context 9

Task 1 – Understanding the person’s experience 10

Task 2 – Consulting with people that have a learning disability 11

Task 3 – Resources to support consultations with people with a learning disability 12

Task 4 – Evidence-based choice of medicines 12

Task 5 – Make medicines optimisation part of routine practice 14

Task 6 – Responding to questions or concerns about medicines from people with a learning disability 15

Task 7 – Evidence-based choice of medicines 16

Task 8 – Safe and effective use of medicines 17

Task 9 – Treating behaviour that challenges with non-pharmacological strategies 18

Task 10 – Make medicines optimisation part of routine practice 19

Further reading 20

Checklist for action 22

References 23

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Learning with CPPEThe Centre for Pharmacy Postgraduate Education (CPPE) offers a wide range of learning opportunities in a variety of formats for pharmacy professionals from all sectors of practice. We are funded by Health Education England to offer continuing professional development for all pharmacists and pharmacy technicians providing NHS services in England. For further information about our learning portfolio, visit: www.cppe.ac.uk

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We recognise that people have different levels of knowledge and not every CPPE programme is suitable for every pharmacist or pharmacy technician. We have created three categories of learning to cater for these differing needs:

1 Core learning (limited expectation of prior knowledge)

2 Application of knowledge (assumes prior learning)

3 Supporting specialties (CPPE may not be the provider and will direct you to other appropriate learning providers).

This is a 2 learning programme and assumes that you already have some knowledge of the topic area.

RevalidationYou can use this programme to support revalidation and your continuing professional development (CPD). Consider what your learning needs are in this area. For more information about revalidation and to record your entries, visit: www.mygphc.org

Keeping up to dateTo ensure this learning resource is up to date we will review it every year. A CPPE programme manager will check through the material to ensure the content is current and relevant, and that the quality of the learning experience is maintained. You will find the latest version of this resource on the CPPE website.

FeedbackWe hope you find this learning resource useful for your practice. Please help us to assess its value and effectiveness by completing the feedback form at your event, or by emailing us at: feedback@cppe.ac.uk

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About this CPPE workshop resourcePeople with a learning disability experience more physical ill health compared to the general population. They are also more likely to have additional diagnoses, such as epilepsy or a mental health condition. Therefore, the treatment regimens of people with a learning disability can be complex. People with a learning disability may have problems communicating their preferences about medicines and whether medicines are working for them or causing unwanted effects. They may need more time to process information.

Public Health England has reported that, on an average day in England, between 30,000 and 35,000 adults with a learning disability are prescribed psychotropic medicines without appropriate clinical indications.1

The NHS England guidance to support healthcare professionals to review inappropriate prescriptions for psychotropic medicines for people with a learning disability can be accessed via the following link: www.england.nhs.uk/learning-disabilities/improving-health/stomp.

The NHS England guidance led to a number of professional organisations signing a pledge to take action in relation to stopping over-medication of people with a learning disability, autism or both (STOMP), including the Royal Pharmaceutical Society (RPS). The RPS pledge can be accessed at: www.rpharms.com/resources/ultimate-guides-and-hubs/medicines-optimisation-hub/stomp.

Aim

The overall aim of this programme is to raise your awareness of the challenges faced by people with a learning disability in using medicines, especially those with long-term conditions or taking multiple medicines. This will enable you to support people with a learning disability to optimise their medicines, health and wellbeing. It will also help you ensure that people with a learning disability have a review of psychotropic medicines and, if appropriate, a gradual reduction and withdrawal of medicines.

There are three parts to this CPPE workshop resource, all of which must be completed in order to achieve the learning objectives:

■ this pre-workshop book, which may include reading, information searches and tasks that you need to complete before you attend the workshop

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■ the workshop itself, which is focused on the knowledge, skills and behaviours that will help you manage and optimise care for patients

■ the tasks in the pre-workshop book that have been indicated as post-workshop activities, which need to be completed after the workshop has taken place.

This book gets you started. It provides key information and tasks to help you meet the learning objectives, but it also encourages you to identify your own learning needs. It then challenges you to relate what you have learnt to your own practice and professional development. We have included tasks to stimulate your thinking and we will refer to these again at the workshop, so please ensure you complete them in advance.

We estimate it will take you up to four hours to complete the tasks in this book.

A note about web links

Where we think it will be helpful, we have provided web links to take you directly to an article or specific part of a website. However, we are aware that web links can change. If you have difficulty accessing any web links we provide, please go to the organisation’s home page or your preferred internet search engine and use appropriate key words to search for the relevant item.

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Learning objectivesYou can use our programmes to support you in building the evidence that you need for the different competency frameworks that apply across your career. These will include building evidence for your Foundation pharmacy framework (FPF) and supporting your progression through the membership stages of the Royal Pharmaceutical Society (RPS) Faculty.

As you work through the programme, consider which competencies you are meeting and the level at which you meet these. What extra steps could you take to extend your learning in these key areas?

After completing all aspects of this programme, you should be able to:

■ identify strategies to support people with a learning disability (and their carers) to optimise their medicines, health and wellbeing

■ apply verbal and non-verbal communication techniques to engage people with a learning disability in discussions about their medicines

■ describe how to appropriately involve carers, family members and support workers in the consultation and identify how to gain consent to do this

■ explain the place for medicines use and non-pharmacological intervention in the treatment of behaviour that challenges

■ distinguish between appropriate and inappropriate psychotropic prescribing for people with a learning disability

■ identify people with a learning disability who may benefit from a review of psychotropic medication.

Patient outcomes

Optimisation of medicines for people with a learning disability will:

■ improve adherence by overcoming barriers to using medicines as prescribed

■ reduce unwanted effects of medicines

■ produce a greater understanding of purpose, benefits and risks of medicines

■ increase satisfaction with health and wellbeing and potentially reduce hospital admissions.

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Taking action to reduce inappropriate prescribing of psychotropic medicines for people with a learning disability will:

■ reduce unwanted effects of psychotropic medicines

■ potentially improve the quality of life in respect to health and wellbeing

■ decrease the inappropriate treatment of behaviour that challenges and increase the initiation of more appropriate non-pharmacological interventions.

Improved patient outcomes should be your goal when supporting people with a learning disability to manage their medicines. Complete the following tasks to prepare yourself for the workshop.

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Pre-workshop tasksBefore attending the CPPE workshop, you need to complete the tasks set out below.

The workshop is a practical learning session, designed to give you local information on learning disabilities and to build your confidence through role play.

Background reading – setting learning disability in context

People with a learning disability have poorer health than their non-disabled peers and may need to take more medicines.

■ People with a learning disability have a shorter life expectancy and increased risk of early death when compared to the general population.

■ Respiratory disease is the leading cause of death for people with a learning disability (46–52 percent), with rates much higher than that of the general population (15–17 percent).

■ Coronary heart disease is another leading cause of death amongst people with a learning disability (14–20 percent).

■ The prevalence rate of epilepsy among people with a learning disability has been reported as at least 20 times higher than for the general population, with seizures commonly being multiple and resistant to drug treatment.

■ People with a learning disability have an equal risk of suffering from a serious mental illness such as psychosis or bipolar disorder.

Pharmacy professionals can play a significant role in supporting people with a learning disability to manage long-term conditions and optimise the use of medicines.

Log in to the CPPE website and access the Learning disabilities distance learning programme: www.cppe.ac.uk/programmes/l/learndislc-d-01.

Read Section 1 which focuses on setting learning disability in context.

Read Section 4, which focuses on learning disabilities, mental health and challenging behaviour.

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Task 1 – Understanding the person’s experience

Read What a patient with a learning disability would like you to know (www.bmj.com/content/355/bmj.i5296). It tells the story of Emily Smith, a 26-year-old woman with Down’s syndrome, and her experience of attending the emergency department.

Watch the videos about:Shaun’s good experience: https://vimeo.com/183629506Shaun’s bad experience: https://vimeo.com/183629507

Reflect on what you have learnt. You will be asked to share your reflections at the workshop.

How did Shaun’s experience make you feel?

What will you do differently as a result of watching Shaun’s videos?

How did Emily’s story make you feel?

What will you do differently as a result of reading Emily’s story?

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Task 2 – Consulting with people who have a learning disability

A person with a learning disability may have challenges communicating their preferences about medicines, including whether medicines are working for them or causing unwanted effects. Log in to the CPPE website and access the Learning disabilities distance learning programme: www.cppe.ac.uk/programmes/l/learndislc-d-01.

Read Section 2, which focuses on consulting with people who have a learning disability, and watch the videos of consultations with people with a learning disability listed on page 23 of the programme.

Make notes on any learning points from watching the videos. You should aim to understand the person’s experience.You may find ICEF (ideas, concerns, expectations and feelings) and TED (tell, explain and describe) useful models.

What questions would you ask a person with a learning disability to understand their experience of taking psychotropic medicines?

Tell questions

Explain questions

Describe questions

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Task 3 – Resources to support consultations with people with a learning disability

NHS England requires providers of NHS services to adhere to the Accessible Information Standard. Easy read leaflets are useful resources to support you in discussing information with people with a learning disability.

The University of Birmingham has published easy read leaflets about psychotropic medicines: www.birmingham.ac.uk/research/activity/ld-medication-guide/downloads/medicine-information.aspx.

Print or download a copy of the Lithium easy read leaflet on to a mobile device. Read the leaflet and bring a copy with you to the workshop.

Task 4 – Evidence-based choice of medicines

In July 2015, NHS England made an urgent pledge to tackle the over-prescribing of psychotropic medicines for people with a learning disability: www.england.nhs.uk/2015/07/urgent-pledge.

In 2016, the NHS England programme Stopping over-medication of people with a learning disability, autism or both (STOMP) encouraged everyone involved with people with learning disabilities who received psychotropic drugs to play their part in ensuring that medicines are reviewed and, if appropriate, gradually reduced. The STOMP leaflet is available on the NHS England website: www.england.nhs.uk/wp-content/uploads/2017/07/stomp-gp-prescribing-v17.pdf.

Pharmacy teams have a key role in reviewing medicines and ensuring that people with a learning disability are only taking medicines if they need to. People with a learning disability may be prescribed psychotropic medicines to control behaviour that challenges. This is an unlicensed indication. These people should have an individualised care plan documenting the reason for taking the medicine, review dates and monitoring requirements.

Make sure you know the indication for psychotropic medicines because they may be prescribed to control behaviour that challenges or for mental health conditions. Anticonvulsants may be used as mood stabilisers but could have dual use for epilepsy control.

Read the NHS England toolkit Stopping over-medication of people with learning disabilities: www.england.nhs.uk/learning-disabilities/improving-health/stomp.

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Read the easy read letter from NHS England about the urgent pledge: www.england.nhs.uk/wp-content/uploads/2015/07/ld-med-advice-letter-easy-read.pdf.

Read the easy read leaflet on medicines advice for patients, families and carers: www.england.nhs.uk/wp-content/uploads/2015/07/ld-med-advice-easy-read.pdf.

Organisations who care for people with a learning disability also signed the STOMP pledge via their umbrella organisation, Voluntary Organisation Disability Group (VODG). Find out more about the pledge on their website: www.vodg.org.uk/campaigns/stompcampaign.

Read the VODG guide to preparing for a medication review: www.vodg.org.uk/publications/preparing-to-visit-a-doctor-to-talk-about-psychotropic-medication.

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Post-workshop tasksThese tasks can be completed after the workshop.

Task 5 – Make medicines optimisation part of routine practice

Poor physical health can be a side effect of treatment, eg, weight gain, cardiovascular disease and increased risk of diabetes. This is compounded in people with a learning disability who often have a poor diet or lack of exercise. Pharmacy professionals should encourage people with a learning disability to have an annual health check with their GP.

Medicines review is part of the annual health check and GPs can refer to a pharmacist for a more in-depth medicines review if they identify that a person has problems with using medicines. Pharmacists should agree criteria for referral with GPs for in-depth medicines reviews.

Log in to the CPPE website and access the Learning disabilities distance learning programme: www.cppe.ac.uk/programmes/l/learndislc-d-01.

Read Section 5, which focuses on medicines optimisation for people with a learning disability.

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Task 6 – Responding to questions or concerns about medicines from people with a learning disability

People with a learning disability often have questions and concerns about their medicines. They will want help with things that they find difficult.

Try and find a person with a learning disability that you can talk to. This might be a patient, family member or friend. You should aim to understand the person’s experience by asking them about their experiences of taking medicines and what would make it easier. Ask if they can swallow tablets and capsules and if they can use other formulations. Discuss changes of formulation with them and ask them how they feel if their medicine looks or tastes different.

How will you approach consultations with people with a learning disability to support them to optimise their medicines?

What resources can you use to improve communication with people with a learning disability?

Who within the multidisciplinary team can you work with to help people with a learning disability to better understand their medicines?

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Task 7 – Evidence-based choice of medicines

Prescribers should select medicines using the best evidence by following NICE guidance and local formularies where possible. This includes choosing an appropriate formulation and timings of a medicine.

People with a learning disability may be prescribed complicated treatment regimens with medicines frequently used outside their product licence. Many people with a learning disability have difficulties swallowing medicines but a licensed formulation should be used if possible. For example, an oral liquid should be prescribed rather than crushing a tablet, which is an off-label use.

How would you explain unlicensed or off-label use of medicines to a person with a learning disability? What words or phrases would you use? Can you find any easy read leaflets on the internet to help you?

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Task 8 – Safe and effective use of medicines

The Equality Act 2010 requires those providing care to make reasonable adjustments for people with a disability. People with a learning disability may require adjustments to ensure that they are able to take their medicines safely and effectively: pharmacy professionals can support them with this.

What factors might prevent people with a learning disability from using their medicines safely and effectively?

What adjustments might you need to make to support people with a learning disability to use their medicines safely?

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Task 9 – Treating behaviour that challenges with non-pharmacological strategies

Medicines have been used to treat behaviour that challenges for several years and, while some people will need to remain on psychotropic medicines for an extended period of time, long-term use can cause serious side-effects, poor health and even premature death. Read NICE guidance NG11: Challenging behaviour and learning disabilities: prevention and intervention (www.nice.org.uk/guidance/NG11), which emphasises:

■ the need for a clear review and monitoring strategy when psychotropic medicines are prescribed

■ the need for a clear medicines withdrawal and behavioural management plan

■ the importance of using relatively new non-pharmacological strategies alongside medicines; medicines should never be used in isolation2

■ the need to clearly target which behaviours are being treated with medicines and why.

Watch the short animation on the British Institute of Learning Disabilities’ (BILD) website for an insight into functional assessment of behaviour and on positive behavioural support (PBS): www.bild.org.uk/our-services/positive-behaviour-support/capbs/pbsinformation/introduction-to-pbs.

Make notes on your key learning points from watching the animation.

Notes

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Task 10 – Make medicines optimisation part of routine practice

It is an NHS England priority to reduce the inappropriate prescribing of psychotropic medicines to people with a learning disability for the control of behaviour that challenges.

Pharmacy professionals working in general practice can identify and challenge inappropriate prescribing by:

■ identifying people with a learning disability who are prescribed psychotropic medicines for behaviour that challenges

■ reviewing the prescribing of psychotropic medicines for these people, using the algorithm in the NHS England toolkit, and initiating reduction or withdrawal of medicines where appropriate

■ agreeing a system for referring more complicated cases to specialists

■ undertaking audits to measure quality improvement in prescribing

■ discussing the views and concerns of people with a learning disability, their carers and family members about medicines used for challenging behaviours; don’t assume that everyone will want their medicines reduced.

Reflect on your role in reducing inappropriate prescribing of psychotropic medicines for the control of behaviour that challenges.

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Further readingAdams D and Shah C. Reducing antipsychotic prescribing in people with learning disabilities. Pharmaceutical Journal; October 2016. www.pharmaceutical-journal.com/learning/cpd-article/reducing-antipsychotic-prescribing-in-people-with-learning-disabilities/20201751.cpdarticle

Cole A. How can you encourage medicines optimisation for people with a learning disability? Royal Pharmaceutical Society and CPPE. March 2016. www.rpharms.com/Portals/0/RPS%20document%20library/Open%20access/Policy/learning-disability-mo-article-160324.pdf

CPPE e-learning programme. Accessible Information Standard - making it work. 2018. This programme will help you to adhere to the standard and support people with communication difficulties. www.cppe.ac.uk/programmes/l/ais-e-01

CPPE distance learning programme. Learning disabilities. 2018. Section 3 focuses on learning disability and physical health. www.cppe.ac.uk/programmes/l/learndislc-d-01

Emerson E et al. Health inequalities and people w``ith learning disabilities in the UK: 2012. Improving Health and Lives: The Learning Disabilities Public Health Observatory. 2012. www.emeraldinsight.com/doi/full/10.1108/20441281211198835

Public Health England. Pharmacy and people with learning disabilities: making reasonable adjustments to services. June 2017. www.gov.uk/government/publications/pharmacy-and-people-with-learning-disabilities

The Royal College of Psychiatrists website has a range of materials for caring for people with learning disabilities. The faculty report, Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge: practice guidelines, provides some really useful information about different types of behaviours that challenge. Appendix 1 contains a self-assessment template for measuring prescribing practice that covers diagnoses on multiple axes, prescribing categories, the rationale for prescribing, target symptoms and measures of outcome. www.rcpsych.ac.uk/members/your-faculties/intellectual-disability-psychiatry/news-and-resources

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The Challenging Behaviour Foundation website provides detailed information about behaviour that challenges for healthcare professionals and families of people with a learning disability. www.challengingbehaviour.org.uk

The Royal Pharmaceutical Society has produced a number of resources which provide information and guidance about the use of unlicensed medicines and specials. These resources can be accessed via: www.rpharms.com/pharmacy-practice-resource/specials.asp

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Checklist for actionNow that you have worked through this pre-workshop book, take a moment to run through this checklist to make sure that you are well-prepared for the workshop and that you have completed the follow-up activities.

Actions I completed this on:

I have looked at the appropriate websites and resources.

I have completed the pre-workshop tasks 1–4.

I have completed the post-workshop tasks 5–10.

Signed: Date:

Have this book accessible to you during your workshop. Make sure that you know when it is and what time it starts.

Enjoy your learning.

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References1. Public Health England/CPRD. Prescribing of psychotropic drugs to people with learning

disabilities and/or autism by general practitioners in England. 14 July 2015. https://webarchive.

nationalarchives.gov.uk/20160704150153/http://www.improvinghealthandlives.org.

uk/publications/1248/Prescribing_of_psychotropic_medication_for_people_with_

learning_disabilities_and_autism

2. National Institute for Health and Care Excellence. NICE guideline [NG11]: Challenging

behaviour and learning disabilities: prevention and interventions for people with learning disabilities

whose behaviour challenges. May 2015. www.nice.org.uk/guidance/NG11

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