Kayleigh is 5 years old and was diagnosed with oligoarticular JIA 12 months ago. She had joint injections under general anaesthetic with a good result and eye screening showed no signs of uveitis. She lives with her dad and sister as mum left the family home several years ago after a long history of substance abuse. A social worker was involved in supporting dad at the time but the case has since been closed.
Unfortunately Kayleigh develops further swollen joints over the next 6 months and the decision is made to start subcutaneous methotrexate (MTX). The community children's nurses (CCNs) provide support in assisting dad to administer her injections. After 6 weeks the CCNs report that dad is managing to give Kayleigh her injections and they discharge her from their caseload.
The clinical nurse specialist (CNS) is advised that Kayleigh has failed to attend 2 of her eye screening appointments with the ophthalmologist. She then fails to attend an appointment with the rheumatology team. The CNS manages to contact dad on the telephone and he sounds sleepy and apologises - explaining that the family have all been unwell and he forgot about her appointments. Another appointment is made but she fails to attend. Kayleigh has not been reviewed for over 5 months and her blood monitoring is also overdue. The home care company call the CNS to explain that they have struggled to contact dad and been unable to deliver her medication for several months.
The CNS manages to contact dad again - he explains that he has had a 'bad back' and will bring her to clinic. The CNS arranges to have her eyes screened at the same visit. Kayleigh arrives with her dad whose speech appears slurred and he seems restless. A friend has driven them to the hospital. At the end of the rheumatology review, dad wishes to leave explaining he has a bad back and is taking tramadol. The CNS is concerned that she needs to attend her eye screening appointment and offers to take her to the ophthalmology department. Kayleigh is diagnosed with active uveitis in both eyes and commenced on predsol eye drops.
There are several safeguarding concerns which are summarised below.
- Failure to attend hospital appointments – eye screening and rheumatology
- Blood monitoring for methotrexate (MTX) is overdue
- The homecare company have struggled to deliver her MTX
- Social care have been involved in the past
- Family history of substance abuse
- Dad excuses missed appointments due to family/personal illness
- Chaotic family life raises concern that Kayleigh may not be receiving her treatment regularly
The clinical nurse specialist (CNS) contacted the school nurse to see if Kayleigh was attending school. The school nurse reported she and her sister were often late for school, they were often collected from school by grandparents and they had some concerns about her appearance. A meeting with dad, the CNS and school nurse was arranged at school. Dad arrives late, seems able to sit comfortably, and has slurred speech and small pupils.
The school nurse offers for Kayleigh to have her eye drops instilled at school to help dad. He does not accept this help and firmly tells her that he can manage.
The CNS contacted social care to establish the contact with the family. The case was no longer open but both parents had substance abuse issues in the past and grandparents were involved in family support.
The CNS contacts dad and offers support with methotrexate injections to be given by the community nursing team. He refuses this and sounds quite aggressive on the telephone.
The CNS calls the family GP to explore areas of concern. The GP tells the CNS that the family are 'flagged' on their records as a result of previous concerns regarding meeting the children’s healthcare needs. She reports that dad is not on any regular medication which could account for his slurred speech and sleepiness. The CNS calls dad. She explains that she is worried about Kayleigh and that dad appears to be struggling and she would like to explore more help. Dad sounds cross at this suggestion but she tells him she will be contacting social care to see what extra support they can offer.
The family are then referred to social care.