Case Study 6
Reason for the referral
AF lives with a younger step sister who has cerebral palsy. Her step sister uses a wheel chair to get around as she does not have the use of her legs. She suffers with learning difficulties and attends a special school. AF provides a lot of intimate personal care for her sister such as changing incontinence pads, bathing etc. This can often be in the middle of the night. AF provides all the personal care her sister needs partly because of the nature of the intimate care that her father will not do, or that he is unable to do.
She is the primary carer for her sister and her father. AF father has Schizophrenia and has visual and auditory hallucinations of dead people. He also has suffered from Chronic Pain Disorder and has been diagnosed with MS. He is known to self-medicate with Cannabis. AF father relies on AF to such an extent that he has previously cancelled respite holidays that had been arranged for AF as he felt he needed her at home. This level of care has been provided for a number of years and results in an emotional impact for AF, making her feel resentful. She has also complained that physically moving her sister around or picking her up can be painful.
Young Persons background
AF is a 14-year-old girl who lives in the Ellesmere Port Area. She lives with her birth father, and has two step sisters and two half-sisters which live sporadically at the same address. AF attends the same special school as the sibling she cares for. AF has moderate/severe academic learning difficulties. She has a diagnosis of Neurofibromatosis type 2, which cause “café au lait” marks on her skin along with benign tumours inside her body. She is checked regularly through MRI scans for any developments with the tumours.
Issues prior to service engagement
Due to the high level of care for both her sister and father, AF was and has been heavily relied upon as the main carer. This has meant that her father has been very restrictive of her movements and leaving the home, at times, cancelling weekend respite. AF is rarely allowed to go out, so her socialising is focused at home or school. AF has expressed her resentment around feeling like she is missing out on social opportunities and the dependency that is on her as the main carer.
When Cheshire Young Carers received the referral for AF, there was a concern that AF learning needs may be detrimental to her experience at Cheshire Young Carers and also may impact those existing young carers who access our sessions to have respite from caring for siblings at home. AF’s father described AF as having poor speech, limited understanding and that she would require extra time/support when explaining things or tasks to her. He also raised concerns around the “café au lait” marks, saying that if she was to bump into anyone or anything, this can cause the tumours to become cancerous. The picture painted by the referral and the description by AF’s father describes a young person with complex physical and learning difficulties.
Support offered by Cheshire Young Carers
The Link worker contacted AF’s social worker and school to get a better understanding of her medical and learning needs. It was concluded that, although AF does have some learning delay and may need extra help in understanding instructions, she was not likely to stand out as a person who needed specialist treatment and that socially, she could hold her own. Her learning difficulties were described as academic rather than social. The concerns over her café au lait marks required no further concerns as the sessions were not likely to be any more active or boisterous as those she may take part in at school, which settled the link workers concerns. The link worker then supported AF’s father in completing the relevant consent forms. AF father informed the link worker he had limited ability with reading and that he found writing difficult/painful.
Once consent forms had been acquired, transport was arranged to support AF getting to the session and AF was seen attending the session the following week. AF presented as quiet within her first session, but was happy to take part in the sessions and enjoyed the activities provided. She is less confident in mixing with other young people or finding things to entertain herself. She responded well to structured activities and continues to attend on a regular basis.
AF’s needs were thoroughly explored and understood to ensure Cheshire Young Carers were the right service and able to support her where needed. On doing this, Cheshire Young Carers were confident in offering AF a place within the service.
AF has been exposed to a wider social circle, meeting regularly with other young people from similar backgrounds in her local area. AF has accessed new activities with further potential for fresh experiences as a result of being a part of the continued support offered by Cheshire Young Carers.
The increased social interaction and exposure to new activities or environments will support AF in developing her communication skills and build on her self-esteem and confidence.
The respite AF receives from attending Cheshire Young Carers will help reduce stress and resentment relating to her caring role. Link work and session teams will continue to monitor and support AF and her father where needed and continue to monitor her needs within the sessions and activities.