Learning disability and autism awareness
Learning disabilities often affect the ability to understand new or complex information and to cope independently. Autism is a neurodevelopmental condition affecting communication, social interaction and behaviour. Some people with a learning disability are also autistic.
People with a learning disability and autistic people are known to experience health inequality, poor experience with healthcare services and inappropriate prescribing, and some studies have shown increased likelihood of early death at up to 20 years younger than the general population. Many of these early deaths are thought to be largely preventable.
This pharmacy guide will cover a range of practical issues to raise awareness about the needs of people with a learning disability and autistic people, as well as highlighting resources to enable all pharmacy teams to improve, and prioritise, their service for these groups of people.
This information should be applicable to a range of pharmacy professionals based on their level of understanding, competence and experience in the field of learning disability. It covers issues related to medicine supply, and management, as well as more specialised services looking at delivering structured medication reviews and deprescribing work linked to the STOMP and STAMP (Over-prescribing) agenda. There is something applicable to all sectors of pharmacy practice.
The resources focus on quality-of-life improvement and the reduction in inequality through good medicine management and optimisation. All pharmacy practitioners can utilise the resources to improve their practice and services to people with a learning disability, autistic people, their families and carers.
Learning disability and autism awareness
These will allow pharmacy teams to develop good standards of communication and accessible care to improve their practice.
An understanding and awareness of the particular challenges and issues related to people with a learning disability and autistic people will be key to developing all pharmacy related services and improving health and wellbeing.
General awareness
- NHS England Learning disability and autism — awareness about priority work related to improving health of people with a learning disability and autistic people. This can help you to develop local and neighbourhood services for people with a learning disability
- Webinar from RPS on learning disability and autism to raise awareness of what we mean by learning disability and autism, the health inequalities people face and tips to help with providing inclusive services. You can use this to reflect on your own practice and share awareness with colleagues. Also has links to further information
- Blog on Pharmacy’s role in reducing health inequalities for people with a learning disability and autism.
Training
- Learning Disability Hub Centre for Postgraduate Pharmacy Education (CPPE) Learning disabilities: CPPE is free to access for all pharmacy professionals and can be used as part of revalidation. It demonstrates you are improving your knowledge and skills to remain on the pharmacy register. It will help you to learn about what it means to be a person with a learning disability and adapt your communication style. You will be aware of the range of accessible resources and how they can be used in practice. It will help you to understand your role in promoting physical, mental and behavioural wellbeing in people with a learning disability as well as to understand how to adapt your practice to ensure excellent medicines optimisation in people with a learning disability
- The Oliver McGowan Mandatory Training on Learning Disability and Autism — e-learning for healthcare enables you to have the right skills and knowledge to provide safe, compassionate and informed care to autistic people and people with a learning disability. It will support you in your interactions with people and their families. (Access limited to NHS health or care organisation (registration required).
Specific pathways, programmes of work and resources
Mental capacity
This section will help you if you are involved with undertaking mental capacity assessment, in asking whether a person needs a mental capacity assessment, and in asking about and referring to best interest decisions.
- Easy read information about Mental Capacity Act.
- Mental Capacity Act — Social care and support guide — NHS provides an overview of the Act and responsibilities.
- NHS England Guidance to support implementation of the Mental Capacity Act in acute trusts for adults with a learning disability is recent guidance for acute trusts.
Reasonable adjustment digital flag
This section will ensure pharmacists know their responsibilities within the digital flag, that they know how to use it and to ensure they are making reasonable adjustments whenever needed. You can also check if your workplace is meeting the criteria in the checklist.
- Reasonable Adjustment Digital Flag — elearningfor healthcare — access limited to NHS health or care organisations (registration required).
- Understanding Reasonable adjustments
- NHS England » The Reasonable Adjustment Digital Flag action checklist
Specialist pharmacy services
- Addressing medication safety inequalities across the system — SPS: Specialist Pharmacy Service — the first stop for professional medicines advice, this uses a number of films to address inequality issues including medicine safety, health inequalities, STOMP and STAMP and reasonable adjustments.
Health and care passports
This section provides an overview of the passport, supporting pharmacists to ask the person if they have one and if they would be okay to show it to the pharmacist, and also providing information on how to get one.
- NHS England Health and care passports is designed to be a quick and easy way for a person to give health and social care professionals more information about their needs, choices, communication and reasonable adjustments.
LeDeR
This section will help pharmacists understand the health inequalities people with a learning disability and autistic people face and the impact of these.
- NHS England Learning from lives and deaths — People with a learning disability and autistic people (LeDeR): an annual report of the lives and deaths of people with a learning disability and autistic people.
NHS Futures (free but requires registration)
- Personas for people with learning disability — printing (MedSIP March 2025) — Medicines Safety Improvement Programme — Futures: sets the lifestyle, environmental and personal issues faced by people with a learning disability with varying needs through four case profiles. It is useful to focus discussion on adapting communication, making reasonable adjustments and approaching medication related discussions.
- STOMP and STAMP — Futures: this is dedicated to highlighting and developing good practice relating to the most appropriate use of medication in people with a learning disability and autistic people. It includes links to training webinars, resources, reports and access to a community of practice, to ask questions and share good practice.
Accessible information for patients, families and carers
Includes accessible information about medication, practical tips and hints, getting advice from pharmacists in different settings, how to safely use medication and language specific resources for particular communities.
Resources for pharmacy teams to use to inform accessible pharmacy services
And resources that you can share with people and help you to ensure that people have information in accessible formats. It also includes discussion cards to make sure the person feels included in making decisions about their treatment, including medication
- Shaun Webster MBE on why we need Bigger Better Labels on our medication and prescriptions — Easy Read Documents provides information and posters to promote access to bigger print labels as needed.
- Medica@teresationsand My Mental Health is a practical toolkit of resources to help teams to include the person and their support team to understand their medication.
Adapted information for pharmacy teams to access and share with patients
This section supports you in educating customers and patients about their medication in an accessible format. It contains information about language specific leaflets for particular nationalities and ethnic communities and ensures the person and their care team are educated and informed so they can be fully included in joint decision-making.
- Create Next App. What’s my drug — medication information in accessible formats. Includes information given in verbal format as well as written and accessible .
- Easy Health | Home (free, but requires subscription). This has information about medication and general health care in an accessible format.
- https://spectrom.wixsite.com/project/easy-read-medication-leaflets has multiple easy read leaflets about specific medication.
- Homepage — C&M Main Website has multiple examples of medication information leaflets in a range of formats and languages, including plain English and easy read.
Medication reviews
This section includes a Structured Medication Review tool kit, resources to be used before, during and after medication reviews.
Adapted resources to give to patients, families and care providers
- Resources to support patients having a Structured Medication Review — The Health Innovation Network has patient information materials in different community languages to support and prepare people who have been invited for a medication review with their GP, pharmacist or other healthcare professional. Easy read materials on this site include:
CoSMR resources
Co-SMR is a collaborative project that worked with healthcare professionals across the country, and people with Learning Disability, families and carers to co-produce tools and resources to use in practice for reviewing Psychotropic medication in practice. For more information about Co-SMR, please look at the NHS Futures STOMP STAMP platform, and the Summary document.
Information for patients, families and carers:
- Preparing for your medication review – easy read
- Preparing for your medication review – plain English
- Invite letter to your medication review – easy read
- Invite letter to your medication review – plain English
Preparing for structured medication reviews:
- Guidance to help professionals prepare for psychotropic SMR
- How to make reasonable adjustments check list
- Best Practice Guidance for completing a STOMP Structured Medication Review – full version
- Best Practice Guidance for completing a STOMP Structured Medication Review – summary
NHS Futures resource bank:
- This workspace is free to access with a suitable email via NHS Futures.
Medication information
This section helps you to keep updated with all agents and understand their usefulness in treatment, understanding side effect profiles and what to look for and discuss in medication reviews.
Impact of effective structured medication reviews
- https://thehealthinnovationnetwork.co.uk/news/new-insights-on-improving-access-to-structured-medication-reviews-for-seldom-heard-communities/ highlights research evidencing positive impact on attendance and impact of SMR in seldom heard communities.
NHS Futures (free, but requires registration)
- STOMP and STAMP — Futures highlights and develops good practice relating to the most appropriate use of medication in people with a learning disability and autistic people, including links to training webinars, resources, reports and access to a community of practice to ask questions and share good practice.
- Community of Practice Pilot Report outlines key recommendations in relation to the role local health systems and all pharmacy teams in the use of medication reviews to reduce over-medication of people with a learning disability.
STOMP and STAMP
This section includes standards, survey and resources linked to safe prescribing and deprescribing practice.
General information
- NHS England Stopping over medication of people with a learning disability and autistic people (STOMP) and supporting treatment and appropriate medication in paediatrics (STAMP) provides an overview and links to resources for professionals, patients and their families.
- Position-statement-ps0521-stomp-stamp.pdf is the Royal College of Psychiatrists (RCPsych) STOMP Position Paper.
Guidance
- NICE NG11 and Quality Standard 101 are NICE Guidelines relating to challenging behaviour and learning disabilities and associated standards, highlighting the pathway for prevention and interventions for behaviour that challenges. This includes psychological and environmental interventions as well as medication.
- Stopping antidepressants is a Royal College of Psychiatry guide to stopping antidepressants including practical advice, schedules and safe practice.
- GP prescribing leaflet outlines the role GPs and those working in GP practices have in prescribing, reviewing and deprescribing psychotropic mediation for people with a learning disability.
Resources to use by family and/or support staff
- Preparing to visit a doctor to talk about medication is designed for a support worker who is accompanying a person with a learning disability, autism or both to a GP or consultant appointment.
- Medication Pathway is from the Challenging Behaviour Foundation (CBF) and is for families who have loved ones with more severe learning disability and whose behaviour can be thought to be challenging. It includes information on how to be included in decision-making and challenge long-standing medication no longer thought to be beneficial or is causing significant side effects.
- STOMP STAMP family guide is a co-produced resource to help family carers to understand more about medication and suggests questions to ask clinicians, especially in relation to children and young people.
Resources for patients
- STOMP Everyone working together to stop the overuse of psychotropic medicines and to improve people’s quality of life. An easy read information leaflet.
- NHS England STOMP — Stopping the over medication of people with a learning disability, autism or both – translations. Easy Read information about STOMP translated into other community languages.
- Stopping The Over-Medication of People — STOMP is a STOMP awareness guide for autistic adults and their families including explanations of words, guidance to manage health and medication and a workbook to help prepare for an appointment about medication.
Training
- Link to Mind Ed training has 10 modules within the Mind ED training relating to psychotropic medication and STOMP STAMP, including awareness raising, impact of psychotropic prescribing, safely prescribing and deprescribing and service development.
People’s experiences
- Richards story part 2 is a film about the challenges a person and their family experienced — the importance of nonmedical strategies, regular reviews and co-production.
- Shane’s Story shows the use of non-medication strategies to safely deprescribe psychotropic medication
- Debbie and Lucy’s Story shows how using non-medication strategies to prevent the prescribing of psychotropic medication for behaviour that challenges.
- Ethan’s Story shows how STOMP can be used to improve all aspects of health through quality medication optimisation.
- Collaboration in Sunderland explains how working in true collaboration leads to more successful outcomes related to medicines.
NHS Futures (free but requires registration)
- STOMP and STAMP — Futures is dedicated to highlighting and developing good practice relating to the most appropriate use of medication in people with a learning disability and autistic people — includes links to training webinars, resources, reports and access to a community of practice to ask questions and share good practice.