PAMIS are a charitable organisation who provide support to people with profound and multiple learning disabilities (PMLD), their families, carers and interested professionals. They offer practical help in the form of training and information, individual support, assistance with accessing community resources and they also lobby to influence policy and improve services both locally and nationally for those with PMLD and their families.
Gillian is a very petite 30 year old lady who has cerebral palsy which affects all her limbs (quadriplegic), scoliosis and has a jejunostomy through which she receives her food, fluids and her medication.
She has no verbal communication but is able to communicate non-verbally – e.g. it is very apparent through body movements and expression that she adores Andrea Bocelli and his singing! Her parents are attuned to her communication skills but they are not understood by others who do not know her.
Gillian has epilepsy. She requires regular suction to prevent aspiration. She gets frequent chest infections and her parents perform regular chest physiotherapy. They support all her care needs 24/7. Further information can be found in Gillian’s Digital passport.
She uses a wheelchair that has specialist seating to support her scoliosis and kyphosis. Twenty four hour postural care is very important and her family have been trained in supporting this and ensuring the teams that work around her are aware of what is required.
Gillian has a profound learning disability but contributes to family and community life through her engaging personality and activities. She loves to travel, adores music especially opera and is a frequent concert goer. She is often seen out with family and carers on walks and is always pleased to be part of social gatherings.
Gillian also attends a small centre during the day where she has developed some really close friendships with the 3 other people that are also there.
History of present condition
Gillian’s mood changed early one evening and she appeared agitated. All the usual relaxation techniques, music and repositioning weren’t working and when later that night her breathing became laboured the GP was called who on examination decided she needed immediate admission to hospital.
Gillian, along with many people living with PMLD carry a “digital passport” with them that contains a variety of information about their needs and preferences. However this may take time to navigate in an emergency situation.
How can Gillian and her carers navigate the world of emergency hospital admissions and identify quickly what the most important aspects of her care are?