Joan
Joan has Type 2 diabetes, but her main health concern is bladder dysfunction and back pain caused by a compression of nerves in her spine (cauda equina syndrome). Her medical records state she has had CKD since 1997 but she was never told, even though she regularly asked about her kidney health at her diabetes check-ups.
Joan has had insulin-dependent Type 2 diabetes for many years. She is an active member of Diabetes UK and also runs a community centre for older people near her home.
For the past six years, Joan has been suffering increasingly badly from back pain. She has difficulty moving her legs and trouble passing urine when she needs to. She also gets frequent bladder infections. It is thought that these problems are related and caused by a compression of the nerves in her spine (cauda equine syndrome) stemming from a historic injury over thirty years ago when Joan was gravely injured by her ex-husband after a domestic argument. She has had several operations on her back in the past and was supposed to have a coflex fitted to stabilise her spine in 2009. However, an x-ray taken a few months later showed there was no coflex and a different type of operation had been performed without her knowledge.
After almost three decades without major problems, Joan now experiences severe pain on a daily basis and has trouble sleeping at night. She currently takes diazepam and paracetamol, but finds the pain relief she gets from these drugs inadequate. She had to stop taking codeine as it made her very constipated. She also takes omeprazole for acid reflux.
Joan eats a healthy diet with lots of vegetables and does not smoke or drink alcohol. She is keen to lose weight so she can have another operation on her spine, but as she cannot walk unaided it is very hard for her to take exercise. Previously, she had managed to lose 6 stone by walking, which also had helped her to control her blood sugar, but since she became immobilized she has put most of the weight back on again. Joan finds it hard that she can’t move about or potter about in her garden and sometimes she feels quite low. She describes some of the health professionals she has come into contact with in her quest to achieve better health as unsupportive and incompetent. She would like doctors to take more time to listen and empathise, even when they can’t solve the problem.
Joan is a great believer in taking control of her own health but thinks health professionals could do more to help patients help themselves. Through information from her Diabetes UK support group, she was aware that people with diabetes have an increased risk of developing kidney problems. When attending check-ups at her GP practice, Joan would ask about her kidney health and had always been told that her kidneys were perfectly normal’. Therefore she was shocked when a nurse, during the course of inviting her to this study, told her that she had Chronic Kidney Disease, Stage 3, and that this had been recorded in her medical record as long ago as 1997. Joan would like to know more about the meaning of the different CKD stages, whether her kidney impairment is related to the ongoing problems she is experiencing with passing urine and frequent bladder infections, and what she can do to help herself.