Two Good – One Not-So-Good
Last week was quite eventful in terms of offering telephone advice. There was the Consultant Psychiatrist who was extremely worried about his elderly mother who was experiencing all the classic symptoms of PA but whose serum B12 was just over the threshold used by that particular laboratory to define a deficiency. He was pointed towards the Update for Health Professionals and presented a printed version to his mother’s doctor who, after reading the leaflet prescribed a set of loading doses though wouldn’t diagnose her as having PA.
“This is a scandal” he told me. I told him that I was not ‘allowed’ to use words like that. “But I can” he said.
Then there was the lady who couldn’t get a diagnosis and who telephoned in a dreadful state. Again, she was instructed what to do and, perhaps more importantly how to do it and she telephone later in the day after she had visited her GP for the umpteenth time; “I’ve got a diagnosis” she sobbed, “I can’t thank you enough”.
And then there was the remarkable case of a patient being told she was cured. She called the helpline:
“I was diagnosed in 2006 after two years of repeated visits to the doctor. Thankfully, after the diagnosis I was prescribed loading doses and my health improved dramatically. I was on three-monthly injections, and like most patients, I felt myself going downhill after two months but I managed well-enough and was able to carry out my duties. I work in a clinical environment.
Last August I turned up for my injection and the nurse told me that I no longer needed them and that I was cured. I didn’t really understand what was going on but the nurse told me that it was ‘in my notes’. The doctor who diagnosed me was, at the time, as relieved as I was to have found the reason for me feeling so awful so I could only assume that he had been reading my notes and assumed that I was cured though I remember when I had my first injection the nurse told me I would have to have them for life.
Anyway, I haven’t had an injection since then and I cannot believe how ill I feel again. I haven’t been to work for two weeks and I’m getting worse. Please can you help me”.
The normal procedure is to follow the General Medical Council’s advice on making a complaint. And in England the first port of call is to speak with the Practice Manager. The caller didn’t feel well enough to call him and so I offered to do it on her behalf.
The call went well. I explained to the Manager that treatment was for life, and I emailed him a copy of our ‘Treatment for Life’ leaflet along with a copy of the ‘Update for Health Professionals’. He assured me that the incident would be investigated and assured me that there would be no implications for the patient because the society was involved.
I telephoned the member and told her that she would have to make an appointment to see a doctor as soon as possible – that’s what the Practice Manager asked me to tell the patient. All seemed positive. Another little success story and another patient helped.
The next day, first thing in the morning, the patient telephoned me.
“One of the doctors at the practice called me yesterday afternoon. She told me that she didn’t know where I had got the idea that I had Pernicious Anaemia as it isn’t on my records. I told her that Dr. X had diagnosed me in 2006 and she told me that he had retired two years ago and that there was nothing on my record but I should make an appointment to have my blood taken.”
“I asked her if I hadn’t been diagnosed 11 years ago then why had I been receiving intrusive treatment for all those years; but she didn’t answer”.
That patient is now confused, deflated, annoyed and feeling very, very unwell. She has no option but to present herself for more blood tests in the hope that she will again get a firm diagnosis. If not, then she will have no option but to treat herself.
We did our best – but sometimes that’s not good enough.