Complex needs
Isma is 15 years old and has polyarticular Juvenile Idiopathic Arthritis (JIA). She has had symptoms for several years after a protracted length of time where she saw a number of professionals and was eventually referred to the paediatric rheumatology team.
Isma attended her clinic appointment with her mother. During her assessment Isma was noted to be wearing hearing aids and she was able to lip-read. She engaged well with health care professionals. She explained that she was deaf since birth and had an underlying heart condition. Her mother was present but Isma explained that her mother understood English but did not speak it fluently.
A treatment plan was agreed and Isma needed to commence subcutaneous methotrexate after systemic corticosteroids.
- When diagnosing chronic conditions, it is important to remember some patients may have additional health concerns, issues or concerns.
- It is important to include young people and their families in the management of their conditions as key part of transitional care.
- Cultural and personal elements must always be considered and wherever possible written information should be provided in an appropriate language.
- It is important to establish during assessment the best format for information for the young person and family.
- Isma explained that she found the information and discussion overwhelming. Also that her mother was anxious as she did not understand her daughter’s condition or treatment.
- Isma is 15 years old and while very mature still needed the support of her family to make decisions about her treatment.
- A discussion regarding precautions when taking Methotrexate including avoidance of pregnancy is needed.
Multidisciplinary Interventions and Isma's progress
- Isma explained she would prefer someone to attend the consultation who could use sign language to help her understand the discussion more easily. She also requested a Bengali translator for her mother. The nurse specialist (CNS) arranged for this additional support for the next consultation with Isma and her mother. The furniture was arranged in the consulting room to allow a productive discussion. Both Isma and her mother found the consultation much easier to follow
- Confidentiality was discussed with Isma and it was agreed that further personal information would be discussed one to one. This would be addressed using the HEADSS assessment with the CNS and Isma.
- Due to Isma’s deafness she was unable to use the telephone to contact the rheumatology team so email was agreed to be the better option.
- Isma and her family travelled to visit family abroad once a year for 6 weeks in the summer. The CNS provided information regarding travelling with medication and precautions should she become unwell.
- The CNS during one to one discussion with Isma also had discussion about the visits abroad and signposted Isma to local charity and support which may have been of benefit to her regarding arranged marriage which she had highlighted as a concern.
- Isma's treatment was adjusted after 3 months of Methotrexate due to ongoing active disease and she was commenced on a biological treatment. At 16 she was transferred to adult services and continues to be reviewed regularly.
