Roald Dahl's Marvellous Childrens Charity

Supporting Patrick's Complex Care Needs

Patrick, a teenager from Belfast is affected by a movement disorder called Dystonia and requires a lot care from his Mum and family. Roald Dahl Nurse Jennifer helps to manage his complex care needs, providing the best possible healthcare for Patrick and his family.

Mum, Patrick and Roald Dahl Nurse Jennifer

Patrick is 14 years old and lives with his parents and two other siblings in Belfast, Northern Ireland. He suffers from a movement disorder called Dystonia which severely affects his posture and movement. Patrick also has other, complex problems because of his condition including feeding, infections, anxiety, pain and discomfort, as well as airway problems. Because of this, Patrick requires total support from his family to help manage his personal care and daily living requirements.

Attending school can be difficult for Patrick. Seemingly simple things such as car journeys are major challenges, because he experiences extreme episodes of abnormal movements triggered by sitting upright. Consequently, he spends a lot of time at home with his Mum who provides most of his care, especially as it can be difficult to find people who are willing to care for him as these episodes can be very distressing.

What's more, Patrick can experience very painful spasms when these episodes occur and special medication is required, so his prescriptions need to be delivered directly to his home so his family can provide pain relief quickly. 

Although Patrick's continuing daily care needs mean his Mum has to be his primary carer, since Summer 2017 Patrick and his family have been supported by Roald Dahl Neurodisability Nurse Jennifer, who works at Belfast Health and Social Care Trust. Jennifer is in regular contact with the family and provides invaluable support. She helps to manage his prescriptions for pain relief and coordinate his care with other teams within the hospital because of his complex health issues. Jennifer communicates with other healthcare professionals to advocate on his behalf and ensure he avoids unnecessary side effects from multiple medications. 

Because of Patrick's age, he is soon to be moving from child to adult services. Roald Dahl Nurse Jennifer will play a crucial role in coordinating his care as he transitions between these services, which can be a challenging and difficult time. 

With Roald Dahl nurse Jennifer's help, Patrick's Mum feels supported and has someone to talk to when she has worries or issues about Patrick's health and care. Patrick's complex care needs mean he continues to require care from his family and healthcare professionals, but with the help and support of a Roald Dahl Specialist Nurse like Jennifer, Patrick and his family can be provided with the best possible healthcare.

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