Fiona’s niece, Caitrin, was born with severe brain damage and was not expected to survive her first 24 hours after the ventilator was switched off. Against all the odds, and with Fiona holding her for the whole night, Caitrin survived. The following morning, Fiona had no hesitation in taking the life-changing decision to become Caitrin’s carer, which she managed to achieve after obtaining a Special Guardianship Order.
Fiona took one year off work in order to look after Caitrin after she was born as she required a great deal of care. In addition to having widespread brain injury, Caitrin has a range of needs including difficulties with temperature control and seizures. She is fed through a nasal gastric tube as she does not have a swallow reflex and she doesn’t cry but only occasionally makes small quiet noises when she needs attention or is unhappy. Fiona, who works in adult social services, was allowed twelve months of special leave from her local authority employer to look after Caitrin and knew she had to return to work exactly one year later in order to keep her job. Several months before she was due back at work, Fiona managed to find childcare for three days a week with a friend who was trained and prepared to look after Caitrin. However, despite being in correspondence with her employer for several months, she had not been able to obtain a parent carer’s needs assessment to ensure that funds would be available to pay for Caitrin’s care.
Fiona realised she needed help but didn’t have the funds to pay for a lawyer. Fortunately, she discovered at Caitrin’s local hospice that she could obtain free legal advice from a lawyer though the charity LawWorks, which provides training in community care law to volunteers. The lawyer, having heard Caitrin’s story, drafted a lengthy letter to Fiona’s local authority employer, setting out in detail their obligations and responsibilities towards Caitrin and Fiona. As a result, the employer agreed to arrange for the parent carer’s needs assessment to be carried out, the result of which was the Fiona was able to return to work without losing income.
Fiona says, “Without having the funds to pay for childcare, I would not have been able to go back to work after one year was up and I would therefore have lost my job. The lawyer was able to write a long letter which basically encouraged my employer to get on with it. Time was running out for me because the childminder had to make sure she was free to look after Caitrin at the date I was due to go back to work. I’m very grateful to the lawyer for her help.”
Fiona is now back at work and, although Caitlin still faces many challenges she has come on in leaps and bounds. When Fiona is not working, they are able to do the things together which Caitrin enjoys most such as swimming lessons, playgroups and musical sessions.