It is Saturday morning and 13-year-old James Hope is desperate to get to his activity club. His dad, Jim, reaches for his coat, but James is frustrated at having to wait. He stomps off to the car and waits silently, brows furrowed.
This scene takes place most Saturdays but rather than tiring of what other parents might regard as a mild teenage strop, Jim and his wife, Alison, celebrate it. James has autism and they are grateful that their son not only has a regular weekend activity but that he is keen to get to it.
A 24-hour radio station for recovering addicts is among the new schemes in a Royal Society of Arts-led (RSA) project to put service users at the heart of their treatment and support, read my Society Guardian piece here.
Following a summer of ‘common ailments’, in the August of 2007 my eldest daughter Melissa was diagnosed with non-Hodgkin’s lymphoma.
It was at that moment our relationship with the NHS began. Melissa was a student at Aston in Birmingham, she was living university life to the full and if there is such a place as heaven, it seemed Melissa was already there.
However, the day after her 20th birthday her world, and ours, changed in an instant, with the news that she had lymphatic cancer.
Like the staff that cared for Mel, we were thrust into the role of carers, the difference was, they were professionals, and they’d had training. There isn’t anything in life that can prepare you for the role we suddenly found ourselves plunged into, no parenting manual or course to attend, you rely on pure instinct, love, and the hope that the decisions you are making are the right ones.
We watched and waited, twenty four hours a day, seven days a week for nine months. We watched for any sudden rise in Mel’s temperature, a signal that she may have contracted an infection and the knowledge that a trip to A&E would be imminent. We waited for consultants to arrive with the latest news and would try to remain calm if it wasn’t what we wanted to hear. We waited for calls for results following x rays and scans. We watched the hard work put in by nurses and other staff and grew to appreciate the role of everyone, from the consultants to healthcare assistants and even the lady who came round with the tea trolley.
Mel’s care during her time in hospital was very good, but there was room for improvement, minor tweaks rather than wholesale changes.
Having patient access to the internet is something all hospitals should have. It kept Mel in touch with her friends and family and also allowed her to get support and relevant up to date information from the Lymphoma Association’s website.
Late teens to mid twenties is a difficult age range to nurse, Melissa wasn’t a child, but there was a loss of independence and an age regression that certainly brought about a strong reliance on us as parents. She needed us and fortunately, at both Burton and Nottingham hospitals we were allowed to stay with her for as long as she wanted. Another hospital we attended wasn’t so accommodating.
Our issues with Mel’s care mainly focused around communication and this lack of consistency between hospitals.
Mel was nervous of needles and I used to sit with her and let my hand be squeezed when blood was taken or canulas attached. However after being transferred to another local hospital for her chemotherapy, we found this practice wasn’t allowed and she had to deal with this trauma alone. It was at this same hospital where they refused to use her Hickman line (intravenous catheter) because the nurse wasn’t trained, this was after she’d been told needles would be a thing of the past after having the line inserted.
No news meant bad news. If a scan or test had worked, we seemed to be told immediately, whereas we always had to wait for bad news. This meant unnecessary worry. A simple phone call to explain that something hadn’t gone to plan but they were working on other options, would have alleviated the stress of not knowing.
On the whole though, Mel’s treatment and level of care in hospital was very good and this was helped by the wonderful rapport she built with her consultants at Nottingham and Burton. They knew Mel was a football fan and they used that as a common interest to build a patient/doctor confidence. It made Melissa feel special and that she was being treated as a person, not just a patient with a disease.
Our experience has led to me going into hospitals to talk to staff about our nine month insight into hospital life. The feedback from health professionals has been excellent. I also give the same service to bereavement groups. Nothing I can do will ever bring Melissa back, but it’s nice to know that even though she’s no longer with us, her experience is being used to make a difference to people’s lives.