No wages, no sick pay, no annual leave – if you are a carer you will know what we mean!
Caring for a loved one is a physical and emotional strain, lived among a roller coaster of emotions. And although there is plenty of commitment to providing carer support it is really hard to make sure everyone gets what they need when individual carers and loved ones needs are so different.
In Wrexham, however, there is a rare example of creative thinking and practical action changing the lives of Rachel Harry, her daughter Freya and Rachel’s mum Karan.
So, who are Rachel, Freya and Karan?
In 2012, Rachel was an excited expectant mother, but after suffering a massive heart attack during an emergency cesarean section giving birth to Freya her life changed dramatically.
Rachel now requires 24/7 care, due to the effects of a hypoxic brain injury, at home with Freya, her mum Karan, and Karan’s partner Roger. They are all supported by Rachel’s sister Emma and Dad, Paul as well as carers at TLC Nursing. Specialist physio is funded through kind and generous sponsors and provided by TherapyMatters.
In theory, Karan would be entitled to 6 hours’ ‘time off’ each week with planned and regular overnight cover. But this is not possible because all available respite options would separate Rachel and Freya who fall asleep together every night and eat toast together every morning.
What could be done?
So, for more than 4 years, respite was practically impossible for Karan or Rachel and Freya.
Karan has managed a little time away when Rachel’s sister Emma ‘babysat’, but that means Emma leaving her own children behind or bringing them over to Karan’s with her. Rachel and Freya are also unable to stay anywhere else because of the adaptations Rachel needs.
This is where Rachel’s Occupational Therapist Helen Wooding, and Social Worker Susan Sharp stepped in. Using funding via Direct Payments they applied to convert Emma’s garage into a bedroom with ensuite wet room. Their application was successful and now Rachel and Freya are able to be at home with Karan and have mini breaks with Rachel’s sister and her family. This means that Karan has regular rests from caring in her own home with her partner Roger for the first time in five years.
This is the first time within Occupational Therapy that Direct Payments have been used to fund such adaptations, and now Rachel, Freya, Karan and Emma have perfect respite facilities that keep the family unit together. By thinking outside of the box, and being creative with the use of funding on the back of legislation, the adaptation will meet this family’s long term respite needs, it has prevented carer stress, and most importantly Rachel is able to benefit from time away from her home with her daughter and sister’s family with safe and appropriate facilities.