“Tell me what they do to my body”: A survey to find out what information people with learning disabilities want with their medications

Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures.

Authors: Rebecca Fish, Chris Hatton, Umesh Chauhan

Source: British Journal of Learning Disabilities – 2017 – Wiley Online Library

Abstract

Accessible summary

We gave a questionnaire to self-advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine. Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures. There are many different places to find easy-read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines.

Abstract

Background Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people’s information requirements.

Materials and Methods A questionnaire was co-produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self-advocacy conference in the North of England. Fifty-eight self-advocates completed the questionnaire.

Results Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy-read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications.

Conclusions Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format.

Management and prevalence of long-term conditions in primary health care for adults with intellectual disabilities compared with the general population: A population-based cohort study

Source: JARID

Sally-Ann Cooper, Laura Hughes-McCormack, Nicola Greenlaw, Alex McConnachie, Linda Allan, Marion Baltzer, Laura McArthur, Angela Henderson, Craig Melville, Paula McSkimming, Jill Morrison First published: 20 July 2017

Abstract

Background In the UK, general practitioners/family physicians receive pay for performance on management of long-term conditions, according to best-practice indicators.

Method Management of long-term conditions was compared between 721 adults with intellectual disabilities and the general population (n = 764,672). Prevalence of long-term conditions was determined, and associated factors were investigated via logistic regression analyses.

Results Adults with intellectual disabilities received significantly poorer management of all long-term conditions on 38/57 (66.7%) indicators. Achievement was high (75.1%–100%) for only 19.6% of adults with intellectual disabilities, compared with 76.8% of the general population. Adults with intellectual disabilities had higher rates of epilepsy, psychosis, hypothyroidism, asthma, diabetes and heart failure. There were no clear associations with neighbourhood deprivation.

Conclusions Adults with intellectual disabilities receive poorer care, despite conditions being more prevalent. The imperative now is to find practical, implementable means of supporting the challenges that general practices face in delivering equitable care.

What Effect Does Transition Have on Health and Well-Being in Young People with Intellectual Disabilities? A Systematic Review

 Source: JARID

Background Transition to adulthood might be a risk period for poor health in people with intellectual disabilities. However, the present authors could find no synthesis of evidence on health and well-being outcomes during transition in this population. This review aimed to answer this question. MethodPRISMA/MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed, and grey literature was searched. Papers were selected based on clear inclusion criteria. Data were extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. Results A total of 15 985 articles were extracted; of these, 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and well-being issues in this population during transition to adulthood, including obesity and sexual health issues. Conclusion This review reveals a gap in the literature on transition and health and points to the need for future work in this area.

How I bridge 2 worlds as a deaf medical student

Growing up as a deaf person has given me unique insights into patient care, which I hope to incorporate into my practice when I’m a physician.

Source: How I bridge 2 worlds as a deaf medical student

 

I was born profoundly deaf in both ears, which means I could only hear sound above 95 decibels. Without hearing aids, I could hear extremely loud sounds, such as a plane taking off or a train going by, only if I was near them. With hearing aids, I could hear sound at 40 decibels and up, so I could understand one-on-one conversations as long as there was no background noise, the person didn’t mumble and I could see his or her mouth clearly.

Before starting medical school, I got a cochlear implant, which helps me hear so much more than I could before. When I listen to music now, I can hear all the different sounds rather than one static sound, and it’s much easier to differentiate between the instruments. Understanding speech has also become much easier. I now communicate orally with hearing people and via sign language with deaf people. However, I am still deaf, and there are still times when I am unable to understand what people are saying, such as group settings where there’s a lot of ambient noise.