My sister nearly died of pneumonia earlier this year. Exceptional NHS care saved her life. But I have been left flummoxed by the lack of communication during her illness and in the subsequent months of her recovery between the hospitals involved in her treatment and rehabilitation.
My sister has diabetes and rheumatoid arthritis, and doctors think that the pneumonia was brought on—or certainly made worse—by the drugs she was taking for her rheumatoid arthritis when she fell ill. These were stopped as soon as the seriousness of her condition was evident. But now, six months after the bout of pneumonia and her discharge back to her local hospital, the only drugs she is getting for her painful rheumatoid arthritis are simple painkillers, which provide little relief from her symptoms.
Delays in getting effective treatment have been exacerbated by a switch from her local hospital back to the London teaching hospital where she was treated for pneumonia. After months of tests and applications by her local hospital to secure financing for a new expensive drug for her rheumatoid arthritis, her local clinical commissioning group finally approved the treatment. Unfortunately circumstances meant that at this point she switched her care from her local hospital back to the specialist team in London. But rather than getting the new drug within a few weeks, which should surely be possible, the whole process of evaluation and applying for funding has started over. It will be January 2015 at the earliest when she will get her first injection of the new drug and probably at least some weeks after that before she sees any improvement in her symptoms, providing she responds as is hoped.
During this repeat round of investigations and funding application forms I see my sister trying to get back to work despite exhaustion from the pain she is enduring and nausea from the analgesics she is allowed to take. At the same time the NHS is again paying for blood tests, radiography, scans, and administrative support that took place just a few weeks ago. Would it not be simpler, cheaper, and better for the patient for the team at the teaching hospital to bypass this Groundhog Day of work up and to pick up the phone to the local hospital and get the results sent over by email? And then call the clinical commissioning group to get the funding transferred?
I had a similar feeling when my sister was in intensive care with pneumonia. Try as they might, doctors could not identify what had caused by sister’s lungs to be overwhelmed. Once antibiotic treatment starts, they explained, identification becomes more difficult as the infective agent is wiped out. Had they been in touch with the local hospital where my sister was admitted? I dared to ask on one visit. They would have had antibiotic naive bloods that might offer a clue to the causative agent. The doctor looked at me as though I had blasphemed. Surely he couldn’t be expected to communicate with another provider, his face told me.
Despite the excellent NHS care I have witnessed I have also seen the inefficiency and delay in the system that have left my sister frustrated and in pain and disabled for longer than is necessary. I’m left wondering why this is.
Does one hospital not trust the results of tests undertaken by another NHS provider? What’s at the root of this mistrust? Is it the internal market? Or is the medical profession characterised by disdain for colleagues in different organisations? And what would happen if patients held their notes and test results – just as they are able to keep hold of their bank cards, keys, and phone – and pass them on to their new doctors when they transfer providers?
Perhaps doctors will argue that my sister’s condition may have altered since the tests were done a few weeks ago, but even then would it not be better to know the initial results, to see what has changed? I would really love to know.
Zosia Kmietowicz is news editor, The BMJ
Patient consent has been obtained for this article.