We describe our involvement in a difficult case requiring creative solutions and multi-disciplinary working. The specific clinical details are not presented in order to ensure anonymity.

A teenage patient was admitted to our paediatric intensive care unit (PICU) with acute renal failure requiring ongoing renal replacement therapy. The patient was transferred to a general ward where it became clear that social and safeguarding issues were present which were significant enough to delay discharge. Specific concerns were parental learning disability. The pharmacy team worked together with the MDT to provide support and guidance to the parents/carers and patient with:

1. medication adherence,

2. dietary management,

3. ‘Red flag symptoms’ identification and management,

4. information about the patient’s condition.

The pharmacy team initially worked with the patient to help them learn to swallow solid oral dosage forms as this would allow for a wider range of medication compliance aids to be used. The pharmacist achieved this by regularly meeting with the patient, parent and carers to provide advice and support. This was complicated as the patient was fluid restricted, requiring the smallest volumes possible for medicine administration. Different methods of using fluid were explored, for example taking solid dosage forms using fluids excluded from the daily fluid allowance such as Movicol.

The patient’s primary carer had learning disabilities which made conventional supporting materials inappropriate. The pharmacy team worked with the adult learning and disability team, speech and language therapist team as well as social workers, psychologists, specialist nurses and doctors to develop a training package for the carer. Cognitive Assessment results for the carer guided our teaching methods to facilitate information retention. For the pharmacy team, this took the form of pictorial administration charts (MACs) with simple administration instructions. Pictorial patient information leaflets were also developed in an ‘easy read’ style to provide the carer with the appropriate information.

The pharmacy team worked daily with the patient and members of the MDT for a period of 4-weeks to help the patient understand their new condition and important management factors. We worked with the carer regularly to get feedback on different iterations of the MAC and other information packs to help give them the support they required. This involved a week of intensive training where the carer was resident on the ward followed by a short period of home leave.

At the time of writing the patient is now almost ready for discharge pending a final comprehension assessment and longer period of home leave to assess compliance with treatment.

This situation has shown the pharmacy team and the wider members of the MDT that the support for patients/carers with learning disabilities is not readily available and requires significant input from multiple professionals. It furthermore identified gaps in our own knowledge as well as highlighting the work that needs to be done in the future to provide that support to ensure all patient groups start on an equal footing and to empower them to have the best chance possible to manage their or their children’s condition.