Carr, Claudia

Mengoni, Silvana

English

University of Hertfordshire Research Archive

02/08/2019 People with intellectual disabilities are often not told about their medicines and their potential side effectshttps://theconversation.com/people-with-intellectual-disabilities-are-often-not-told-about-their-medicines-and-their-potential-side-effects-119415 1/3AuthorsClaudia CarrSenior Lecturer in Medical Law and Ethics,University of HertfordshireSilvana MengoniSenior Research Fellow, University ofHertfordshireAcademic rigour, journalistic flairThe 1.5m people in the UK with an intellectual disability experience significant healthinequality. Research shows that they are more likely to develop health problems thanthe general population, they are more likely to have reduced access to healthcare, andthey are more likely to receive poorer care.A 2018 report from the Learning Disability Mortality Review Programme found thatpeople with intellectual disabilities also die a lot younger. On average, men die 23years earlier and women die 27 years earlier compared with the general population.Our latest study adds to the evidence of these health inequalities. It shows that manypeople with intellectual disability, who can make decisions about their everyday life,aren’t given clear information about their medication. As a result, they often don’tunderstand the drugs prescribed for them or their potential side effects.Legal consequencesThe Accessible Information Standard states that all organisations providing NHS care and publiclyfunded adult social care must ensure that people with intellectual disability receive information in anVonaUA/ShutterstockPeople with intellectual disabilities are often not told abouttheir medicines and their potential side effectsAugust 1, 2019 2.12pm BST02/08/2019 People with intellectual disabilities are often not told about their medicines and their potential side effectshttps://theconversation.com/people-with-intellectual-disabilities-are-often-not-told-about-their-medicines-and-their-potential-side-effects-119415 2/3accessible format, for example, in easy-read material or pictures. Critically, this also applies tomedicines. There are now legal consequences for those who don’t comply.In 2015, the Supreme Court case of Montgomery v Lanarkshire Health Board redefined the law oninformed consent, putting the patient at the heart of any discussion with a healthcare professional.The judgement states that all healthcare professionals are legally obliged to ensure that patients withthe capacity to consent are made aware of the risks of medical treatments. Healthcare professionalswho breach this duty can be sued for negligence. Yet, as our study shows, people with intellectualdisability are not routinely told about their treatment or the risks it entails.We found that people with intellectual disability often don’t understand when and how to take theirmedication, and they don’t understand the potential side effects. This is a significant problem giventhat 75% of people with an intellectual disability are prescribed drugs compared with 59% of thosewithout intellectual disability.It is important that the person who is prescribed the medicine takes it as intended by the prescriber.Taking too much or taking it too often may mean that the medicine will not work as well and canincrease the risk of side effects.Some of these side effects may not be immediately obvious and may only become apparent withregular medical tests. It is also essential that the patient is told how to report any issues with theirmedicines, which could include the medicine failing to work as expected, side effects and problems intaking the medicines, such as difficulty swallowing, which is more common in people with intellectualdisabilities.The Supreme Court redefined the law on informed consent. Willy Barton/Shutterstock02/08/2019 People with intellectual disabilities are often not told about their medicines and their potential side effectshttps://theconversation.com/people-with-intellectual-disabilities-are-often-not-told-about-their-medicines-and-their-potential-side-effects-119415 3/3Law Intellectual disability NHS health inequality Prescription drugs Supreme CourtReducing health inequalitySome things that people with intellectual disabilities say help them to understand their medicationinclude using simpler language, as well as pictures and videos. This helps people understand why theyneed to take their medication and how to use it correctly.The Supreme Court decision in Montgomery specifically states that information must be given topatients in a way that they can understand. In doing so, the patient will be able to understand theseriousness of their condition, the risks of any suggested treatment or alternatives, and then provideinformed consent. And it is important that healthcare professionals speak directly to the person withintellectual disabilities, not just the carer.A key message of our research is to put people with intellectual disabilities at the heart of the healthservice – a message which is now supported by the law. Sometimes this might mean that healthcareprofessionals will have to spend longer explaining their medication, use different resources, andexplain things in simpler language. This will help improve the lives of more then a million people inthe UK with an intellectual disability and make a significant contribution to addressing the currenthealth inequalities.

People with intellectual disabilities are often not told about their medicines and their potential side effects

http://uhra.herts.ac.uk/bitstream/2299/21564/1/The_Conversation_article_People_with_intellectual_disabilities_are_often_not_told_about_their_medicines_and_their_potential_side_effects.pdf

People with intellectual disabilities are often not told about their medicines and their potential side effects

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