“He’s worried sick”

Jun 22, 2017 | Patient Stories & Support | 5 comments

From the very first day that we started our helpline I’ve been aware that there is a serious problem with the way in which patients with Pernicious Anaemia are treated. Very few patients are able to receive an individually tailored treatment regimen based on their own personal need. I say very few because there is ‘good practice’ out there where members tell us of their physician allowing them to have their replacement therapy injections whenever they need them; but these lucky patients are, unfortunately, in the small minority of patients.

And there is another problem that has made itself known to us. It causes upset, anxiety and confusion not only with the patient but with the patient’s family as well. It’s when the patient is told that he or she no longer needs the injections because a recent blood test shows that the serum B12 is high or very high.
It’s hard to imagine (from my point of view because I’ve never experienced it personally), just how worrying this must be for patients. They are told, when they are, (eventually), diagnosed, that they will need B12 injections for life; and that without the injections the patient would die. Happy days indeed; the patient can be kept alive and will hopefully lead a normal life – although we know that that isn’t always the case.
Then, suddenly, the patient is told that he or she will no longer be able to have the injections that has been keeping them alive for so long. It leaves the patient feeling stunned, confused, worried and anxious. And it should never happen.

I took a call yesterday firstly from the patient himself, a 83-year-old man who had been receiving his injections every two months for over thirty years.
“They’ve told me I no longer need them because my levels are fine” he told me with a discernible level of anxiety in his voice; “but my old doctor told me I would need them for life”.
I reassured the gentleman that he will need them for life and that he needed to go back to his doctor, tell him or her that he has spoken to the PA Society and that we’ve told him that his injections must not be stopped and must be reinstated as soon as possible.

An hour later I took another call, this time it was from the elderly gentleman’s daughter.
“I’m confused” she said, “he has Pernicious Anaemia and I thought the injections were for life”.
I assured her that that was the case and told her to print out the ‘Treatment is for Life’ leaflet from the online library, take it to her father’s doctor and tell her we, as a society, had given it to her. She thanked me and then, before she hung up, “my father’s been sick with worry for the last seven weeks and he has all the symptoms back”.
It shouldn’t happen, but it does, and, as is often the case, those who are vulnerable – the elderly and the infirm, often suffer the most.