People with learning disabilities still not getting adequate information and support to make decisions about medications

Health information

Making the decision to consent to medical treatment requires access to information, presented in clear and understandable ways. There is evidence that that people with learning disabilities do not always understand information about medications they are prescribed, for example from the medication matters project carried out at the Norah Fry centre  which produced a series of resources, including a booklet for people with learning difficulties, their families or carers, a decision-making tool and a checklist of things that people can the doctor about medication . One study looking at the knowledge of support staff also suggested a need for better information to be made available

The researchers in this study wanted to look at whether such projects have improved the way in which patients with learning disabilities were involved in decisions about taking medications.

They used audit methodology to collect data on current practice concerning consent to treatment amongst people living in Salford against existing best practice guidelines.

They constructed a questionnaire which they used to gather information from a sample of 70 patients with learning disabilities to assess whether they had been given enough information to give informed consent. 45 out of 70 (64%) people completed the questionnaires.

What they found was that patients’ knowledge of their medications was poor. This was particularly true of their understanding of how long they had to take the medication, possible disadvantages and the name of the treatment.

They conclude that doctors are working with patients during consultations and discussing the medications, but that

delivery of this information needs to be improved, and patients’ understanding and recall need to be checked more thoroughly.

Difficult decisions: Are intellectually disabled patients given enough information to consent to medical treatment? Huneke N et al.,  in Journal of Intellectual Disabilities,16, 4 , 265-274

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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