Communicating with patient carers: Learning disability focus

In 2016, the Pharmaceutical Services Negotiating Committee noted that there were almost 7 million carers in the UK. According to Mencap, a charity organization that works with people who have learning disabilities, around 1.5 million people in the UK have a learning disability. Of that number, approximately 150,000 require long-term social care and support. Anecdotally, we know from carers and family members of patients with a learning disability, that when hospitalized, it can be difficult to properly communicate their needs to the inpatient hospital care team. Often, the primary caregiver of a patient understands the patient’s needs and requirements better than healthcare professionals. Therefore, it is vital to establish effective communication between the patient’s carer and the healthcare professional.

Issues Faced by Carers

When admitting a person with a learning disability to a hospital, their primary caregiver or a key worker from their long-term social care setting typically accompanies them. The accompanying carer should be able to summarise the patient’s care plan to the inpatient hospital team, such as the ward nurse, who will take over the patient’s care during their stay. Additionally, the key worker/primary caregiver should be able to notify the hospital team if they observe any care-related issues, such as a change in behaviour due to discomfort or pain.

An issue arises when there is a lack of clear communication between the carer and the inpatient team. Even when care plans for patients with a learning disability are documented, it is unlikely that the hospital team, especially those interacting with the patient for the first time, will fully understand them.

Poor continuity of care

Another challenge is that many hospital staff work on a locum basis, meaning they do not operate in the same hospital or ward every day. In 2016, The Royal College of Nursing estimated that there were between 100 and 200 healthcare agencies in the UK. The General Medical Council also found that between 2013 and 2017, the percentage of doctors working as locums increased from 13% to 18%. With locum work becoming more popular among healthcare professionals, hospital teams in certain environments can experience constant turnover. This also means that the care plan for the disabled patient needs to be handed over to the next healthcare professional on shift. Poor communication among staff and a lack of familiarity with the patient’s care plan can lead to confusion.

Even if they are not the primary caregiver, most family members of a disabled patient rely on healthcare professionals to explain specific changes in their family member’s behaviour. For example, they may ask, “If the patient is non-verbal, why do they usually make grunting sounds?” Situations like this can be more challenging when there is no clear understanding of the patient’s typical behaviour, which may prevent healthcare professionals in charge of the patient’s care from recognizing these behaviours as unusual.


  1. Key care information should be effectively communicated to and gathered by the hospital care team.

As mentioned earlier, most disabled patients who require special care are admitted to the hospital with a care plan. This plan should include details such as allergies, medications and their schedules, dietary requirements, and more. Therefore, it is crucial for those treating or caring for the patient to understand their care plan. Often, the patient’s key worker or primary caregiver acts as an “interpreter,” conveying key messages and providing further explanations when necessary.

Nevertheless, there is no assurance that a disabled patient will consistently have a comprehensive care plan or a designated key worker accompanying them. Consequently, the hospital team must exert their utmost endeavours to acquire a synopsis of the patient’s requirements and document it in a clear format that is readily comprehensible to other healthcare professionals.

  1. Develop a clear handover system for disabled patients’ care plans.

Building upon the previous point, having an easily accessible summary of the patient’s key care information will help facilitate the handover process. Many carers face issues when healthcare teams change shifts, as there is often insufficient handover, requiring them to either fully re-explain the patient’s care or result in missed information about the patient’s care.

Since carers cannot be with the patient 24/7, it is unreasonable to expect them to explain the patient’s care plan to each new staff member on shift. Therefore, it is crucial to establish a clear and efficient handover process for new information among the healthcare team.

  1. Respect the experience and knowledge of those closest to the patient.

Many carers possess direct experience with the patient and can provide valuable insights and advice to the healthcare team. They frequently possess the best capability to observe any unusual behaviours or responses from the patient and to alert healthcare professionals about them.

Certain carers discover that healthcare professionals do not regard their perspective on the patient’s treatment as essential or valuable, particularly if they lack previous medical knowledge. However, this approach only harms the patient and leads to a breakdown in communication between the carer and the hospital team. Respecting the experience and knowledge of carers should be common practice, as it demonstrates a genuine commitment to providing proper care for disabled patients.


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