dementiaI often think that I’m becoming ‘case hardened’ when dealing with telephone calls to the Pernicious Anaemia Society’s offices.  ‘Case Hardened’ is a term usually associated with the legal profession, specifically judges who, because they hear so many cases associated with tragedy and sadness become immune to the emotional aspects of the case and concentrate solely on the facts placed before them.  I take about nine calls a day, most of them concern bad medicine relating to misdiagnosis, non-diagnosis and poor, and, unfortunately all too often no treatment at all.  The calls are wearing because of the complexity of the issues involved.  Every so often I get a junk call from an energy company or whatever and these help to lighten my day – I must be one of the only people who enjoy these cold calls which tells you a lot about the content of the usual conversations I have.  I’m not moaning you understand, I like helping people and getting them to understand the issues involved, but they are often complicated and, as I have said, I seem to have given up on being astonished at what is happening to our members and have become, I suppose, ‘case hardened’.

And then a call comes in that shakes me from my complacency with a vigour that brings me back to earth to realise just how badly Pernicious Anaemia is treated.  I received one such call yesterday.  Be warned – what you are about to read might very well leave you feeling angry, confused and totally lost for words.

It came from a well-spoken gentleman.  I don’t know what his profession was but he was obviously intelligent and probably successful in whatever career he had chosen.  As is often the case he was calling about a relative, in this case a close relative – his wife.

“She has dementia” he told me.  “She’s in her seventies and over the past three years we have stood by and watched her deteriorate.  She now needs 24 hour care and thankfully my two daughters are able to help.  One lives nearby and the other has moved back in with us to help care for her mother”.  So there you have a picture of a caring close family who have rallied around to help the matriarch of the family deal with her illness.  I had a suspicion of what was coming and I wasn’t wrong.

“She, my wife, gets an injection every three months for her Pernicious Anaemia which she was diagnosed with twenty years ago.  The thing is we have all noticed that, after four to five weeks after her injection, she becomes, it’s hard to explain this, but she sort of becomes more agitated and anxious.  Her behaviour changes and even though she appears more anxious and frustrated, she refuses to respond to any kind of stimuli.  Just after her injection she enjoys listening to music, or having stories read to her,  but after four to five weeks she completely loses interest in anything we try to do.  We have mentioned this to her doctor and to the nurse who visits us to give her the injection and have asked for her injections to be increased to every four weeks.  The nurse said she would ask the doctor if she could have the injection every four weeks but she wasn’t optimistic and later told us that the doctor wouldn’t hear of it. What can we do?  It’s awful to see her like this and we are continually counting down to her next injection”.

Now, I don’t usually ask for comments from you but in this case what would you suggest?  And please bear in mind that the family would not want to do anything without the knowledge or approval of the lady’s doctor.  You see, I could suggest a number of options (which I did) but there is a bigger issue here.  How many mothers and wives, and fathers and husbands are also experiencing this problem of getting treatment according to their needs.  Yes, it makes me angry; yes of course it makes me frustrated; but these stories, these horrific stories of unnecessary suffering, serve to wake me from my stupor of treating these cases with a contemptuous familiarity and they act as a sort of wake up call for me to carry on the work I do in trying to get the way in which patients with Pernicious Anaemia are treated.

Please tell me what you would have advised the family.  And remember, don’t get angry; this is a real problem and throwing around insults and bad language will not change things; getting our message listened to and acted upon requires tact, diplomacy and just as importantly evidence.  I’ll be genuinely interested in your suggested responses.