How to improve health outcomes for patients with learning disabilities
People with learning disabilities find it difficult to understand new or complex information, learn new skills or cope independently. They often have poorer health outcomes compared with the general population and are at risk of dying from causes that are preventable.
This article explains how you can use your skills and knowledge as a pharmacist to help deliver high-quality medicines management and pharmaceutical care to people with learning disabilities.
Poor health outcomes
An ongoing government review into the provision of healthcare for people with learning disabilities (see Box 1) sets out the key issues that are still to be addressed in this area of healthcare. These are:
- Delays in the diagnosis, care and treatment of common conditions
- Inadequate pain management
- Poor-quality health checks
- Lack of communication and accessible information for people with learning difficulties
- Exclusion of people from decisions about their care
Problems communicating and limited health literacy can make it difficult for some patients to identify when they are ill or when they are experiencing a side effect to a medicine, and they might have trouble describing symptoms to their carers or healthcare providers.
Box 1: Six Lives
The “Six lives” reports1 follow investigations by the Health Service Ombudsman for England into complaints made by Mencap into the deaths of six people with learning disabilities who died in NHS or local authority care homes.
All complaints concerned the quality of care that was provided at these organisations; investigations found that the needs of people with learning difficulties were not being met and that services lacked co-ordination. The reports call for strong leadership from health and care professions to protect vulnerable people.
In some cases, people with learning disabilities can be more susceptible to adverse and atypical effects of medicines; researchers have demonstrated that people with learning disabilities are more vulnerable to the side effects of psychotropic medicines, which can potentially be fatal.2
A common fault of healthcare professionals, including clinical pharmacists, is to address questions to a patient’s carer rather than speaking directly to the patient. Try adapting your approach to consultations to communicate more effectively with your patients (see Box 2). This may involve allocating more time to appointments or using different questioning methods to explore adherence issues.
Box 2: Helpful hints
Adapting the way you communicate with people with learning difficulties can help both you and the patient get more out of the consultation. Here are some ways that you can do this:
- Ensure the person with learning disabilities is at the centre of care
- Take your time and have patience when communicating
- Establish a trusting relationship with the person and their carer
- Determine how your patient prefers to communicate, for example, through pictures or verbally
- Speak clearly in short sentences and avoid jargon
- Adherence often depends on the attitude of the carer; remember to engage with him or her as well
The Prescribing Observatory for Mental Health (POMH) provides accessible information for people with learning disabilities, their carers and healthcare professionals.3
Resources for pharmacists include an information sheet on screening for metabolic side effects of antipsychotic medicines in community patients, and one on prescribing high-dose and combined antipsychotics on adult acute and psychiatric intensive care wards.
The POMH also provides links to a variety of resources for patients and their carers: these include easy-to-read leaflets and booklets, podcasts and an information and record book for patients who are taking antipsychotic medicines to help them monitor their own physical health.
People with learning disabilities are more likely to have poorer health than the general population.4 Common health problems include:
- Respiratory disease
- Coronary heart disease
- Physical impairment (eg, difficulty swallowing)
- Weight problems (ie, underweight, obesity)
- Mental health conditions
- Sensory impairments
Pharmacists are especially capable of improving outcomes for patients with respiratory-related problems, mental health conditions and epilepsy.
Respiratory problems People with learning disabilities are at high risk of dying from respiratory problems.5 Aspiration pneumonia, frequent upper respiratory infections, malnutrition and dehydration can, in the most extreme cases, obstruct the airway and cause death.The National Patient Safety Agency received 605 reports of choking incidents involving adults with learning disabilities between 30 April 2004 and 30 April 2007.
Closely monitor patients who are on medicines that affect alertness, alter muscle tone or co-ordination, delay swallowing or increase salivation.
Also watch out for factors that can increase the risk of choking — such as problems with chewing, dysphagia and abnormal eating behaviours (eg, eating food too quickly or eating inappropriate, non-food items). Liaising with a speech and language therapist can help you understand your patients’ needs.
The “NEWT guidelines for the administration of medication to patients with enteral feeding tubes or swallowing difficulties”6 provide comprehensive guidance on changing medicines to more suitable formulations. They also provide general information on the legal aspects of altering the form of licensed medicines, how to prepare solid dose formulations for administration through enteral feeding tubes and how to solve problems such as tube blockage and enteral feed interactions.
Involve patients and their carers in decisions to change the administration of their medicines and always seek consent when making any changes. Make sure you teach them how to administer medicines correctly — especially when they require dose manipulations — and provide the equipment and information they need to do this.
Mental health conditions People with learning disabilities are often prescribed multiple psychotropic medicines to treat mental health conditions, such as psychiatric illness, behavioural problems or dementia.
The use of multiple medicines for these purposes is largely based on experience rather than evidence; therefore, you should assess the clinical justification and rationale for treatments regularly. This can be done by:
- Taking an accurate medication history and linking each prescribed medicine with the patient’s medical history (including physical, psychiatric and behavioural health)
- Identifying the intended outcome of treatment and evaluating progress
- Exploring adherence issues and initiating interventions if necessary
- Monitoring for side effects
Epilepsy Educating patients with learning disabilities and their carers about epilepsy and its treatment can encourage adherence. Explain the side effects to the medicines they are using and provide information on how to avoid drug interactions.
Learning disability is a risk factor for sudden unexpected death in epilepsy (SUDEP). Several risk factors for SUDEP have been identified; these include:7
- Frequent seizures (particularly generalized tonic-clonic seizures)
- Subtherapeutic antiepileptic drug levels
- Frequent changes in antiepileptic therapy
- Multiple antiepileptic therapy
- Long-standing disease
- Developmental delay
The National Institute for Health and Care Excellence and the Scottish Intercollegiate Guidelines Network both recommend that information on SUDEP should be provided when counselling patients on managing their epilepsy. Patients should avoid alcohol, illegal drugs, seizure-provoking situations and high-risk activities (eg, swimming) to reduce their risk of SUDEP.
Bernadette Flood is a pharmacist at the Daughters of Charity Service in Dublin, and is a part-time PhD student at Trinity College.
People with learning disabilities have poorer health outcomes than the general population and are at risk of premature death from preventable causes.
Adapting communication skills, providing easy-to-read information and being aware of common health problems are ways that pharmacists can help improve the care of this vulnerable group of patients.
Citation: Clinical Pharmacist DOI: 10.1211/CP.2013.11127252
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