A Miserable Weekend

I know what you’re thinking: that I had a miserable weekend because I don’t know whether I have cancer or not – more about that later. But you’d be wrong. I have had a cloud over me all weekend following a telephone call I received on Friday morning. Calls to the office are now routed to my mobile telephone. These calls are not to be confused with calls to the Helpline which has a separate number only accessible to members – I man the helpline on Saturday mornings. No, these are calls to the office and the number is available to anyone who visits the website. As such, these calls tend to be from non-members and sometimes medical professionals. This particular call was from a non-member who was extremely upset. I could tell by her accent that she was from the midlands in the UK. She explained, through heavy sobbing, that her husband became extremely ill during the pandemic and he was admitted to a care home where he could get the best attention.
“I wasn’t able to see him for nearly two years”, she told me. And no, I’m once again not able to visit him because I can’t get my injections”.
This lady was, or rather is in her early 80’s. She was diagnosed way back in 1992 and managed her condition pretty well though, like many patients, really struggled in the weeks just before her injection was due.
Like many other patients with Pernicious Anaemia she had her injections stopped altogether during the pandemic.
“They told me I could store B12 in my liver for three years so there was no need to risk spreading the virus and having unnecessary injections” she sobbed.
At this point I felt helpless and that there would be nothing I could do to help her.
“The problem is”, she went on, “I’ve now got really bad nerve damage in my legs – I have no feeling in them and they seem to do whatever they want to do. I’m falling and finding it really difficult just to walk around my home”.
Again, there’s nothing much I could do other than to offer sympathy.
“Well”, I told her, in my best reassuring voice, “the guidelines state that if you have any neurological issues due to your Pernicious Anaemia then you should be having injections every other day until there’s no further improvement”.
“Oh I know” she said. Her answer surprised me.
“Has your doctor prescribed you every other day injections?”
“Yes”
Again I was somewhat surprised.
“So, you are getting injections every other day?”
“No. You see, I cannot get into a car because my legs are so bad. And it would be impossible for me to catch a bus”.
So, her nerve damage was getting worse by the day because she couldn’t get to her health centre. And the worse the damage became the less likely it was that she could get to the nurse for the injections that could at least halt any further nerve damage.
I thought for a few seconds before realising there was an easy answer to this.
“I know what you can do” I offered. “Ask your doctor to arrange for a district nurse to visit you every other day to give you your injection”.
I felt quite self-satisfied with myself. Her reaction to my suggestion stunned me.
“She says that she won’t do that because I have to make an effort to help myself”.
I was shocked. It was if she was being punished.
“If only my husband was here – he’d know what to do”. At this point she cried and cried, huge breathtaking sobs. She seemed inconsolable. All I could do was to stay on the line and hope she calmed down.
When she eventually regained composure I told her that I would help. I immediately thought of contacting her MP on her behalf, writing to the clinical director of her Clinical Commissioning Group and maybe telephoning her surgery and speaking with the practice nurse.
“I’ll do what I can to help you” I told her.
“Oh thank you, that you so much”.
“Just a minute while I go and get a pen – I won’t be a moment”.
I placed my mobile telephone on the desk and walked across the room to retrieve my pen to make notes of her CCG, surgery etc.
I picked up the phone. “Okay, let’s start with your surgery; what is its name”.
There was no answer.
“Hello?”
No answer. The phone had somehow disconnected. I immediately went to the ‘caller list’ on my mobile and, there it was, the last call details.
“Number Withheld’.
And that’s why I had a cloud over me all weekend. I was, and the society was, the only hope she had of rectifying a situation that was not caused by bad medicine, not caused by lack of knowledge of how to treat patients with neurological involvement but a situation caused by lack of humanity and compassion – basic human compassion. My only hope is that she will call the office again and that is why I make sure I have a pen with me at all times.