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How we are trying to make hospital visits better for patients with learning disabilities

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‘Learning disability’ is sometimes used interchangeably in health and social care with ‘learning difficulty’. ‘Special education needs (SEN)’ allows the two terms to be used interchangeably in adult health and social care for those with moderate, severe and profound multiple learning difficulties. Learning difficulty should be viewed along a spectrum and, as a pharmacy student, I have had my eyes opened to the potential for pharmacists to help.

For most patients and carers, medical encounters can be an emotionally draining experience. However, for someone with a learning disability and their carer, this can be an extremely stressful or even frightening experience. This may partly be due to the change in environment, for example, from a quiet home to a loud, fast-paced environment where many things are happening much faster. Therefore, some adjustments may be required to ease the experience for these patients.

Following a Care Quality Commission inspection at the Chelsea and Westminster Healthcare NHS Foundation Trust, a lead nurse for learning disability was appointed and a flagging system for patients with learning disabilities with training for staff implemented. It also appears that the NHS generally needs more easy-to-read leaflets, for example, leaflets covering matters such as consent to treatment.

The new hospital flagging system is embedded into the existing electronic patient record, and allows important information about patients to be recorded, which prepares hospital staff for the next admission. The learning disability steering group also has produced a collection of 20 easy-to-read leaflets on topics, ranging from physiotherapy to play therapy.

Additionally, a hospital passport for learning disability has been produced. This is intended to be completed for the person with a learning disability containing information about likes and dislikes, how to communicate with them, and a small section about medicines. Patients keep the booklet with them while in hospital and show hospital staff to inform them of their learning disability.

Monthly training sessions on learning disability are run by the lead nurse for learning disability, with support from care workers from local support groups, charity workers and patients. The training session is aimed at all clinical and non-clinical staff. This facilitates improved awareness about learning disability that can be cascaded within departments.

What about pharmacy’s contribution? Firstly, the trust aims to roll out the pharmacy student-led generic leaflet about medicines for those with a learning disability and their carers by the end of the year. Secondly, the hospital (in collaboration with the National Institute for Health Research Collaborations for Leadership in Applied Health Research and Care for North West London) has produced the booklet ‘My medication passport’. The plan is to insert this into the back of the trust’s learning disability passport.

The pharmacy profession needs to build on the current consultation skills initiative by reflecting on our ability to communicate with and help those with a learning disability and their carers.


Barry Jubraj — lead pharmacist at Chelsea and Westminster Hospital and carer for his son, Alexander, who has a learning disability

Kathryn Mangold — lead nurse for learning disabilities and transition at Chelsea & Westminster Hospital.

Readers' comments (1)

  • Safety of people with intellectual / learning disabilities in hospitals.

    What is already known on this subject ?
    • People with intellectual disabilities are vulnerable and are ‘high risk’ patients in healthcare
    • People with intellectual disabilities are prescribed multiple medications
    • People with intellectual disabilities may be ’invisible’ to pharmacists in general hospitals

    A Confidential Inquiry in England concluded that there was a need for improved identification of people with intellectual disabilities in healthcare settings. The vulnerabilities of patients with intellectual disabilities can, and do, lead to compromised patient safety in general hospitals. Deficiencies exist in the quality and effectiveness of health care given to people with intellectual disabilities which contributes to premature deaths.

    There is a need for a series of clear, evidence based actions that used together ensure that the total safety and pharmaceutical care needs of the person with intellectual disability are met.

    Pharmacists can help reduce health and healthcare inequalities in the population with intellectual disabilities.
    Medication is the main therapeutic intervention in this population.
    Research is needed to determine the role of pharmacists in improving health outcomes and reducing health inequalities in this vulnerable population group when they are admitted to general hospitals.

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