I had a nice email last week; but only after a quite traumatic meeting I had had a few days earlier.
The meeting was with a new Gold Member who lives in south Wales. She had telephoned after becoming a member and I invited her to the office. I’m getting quite used to hearing members’ bad experiences but this one quite shocked me. The lady is in her early thirties and was diagnosed when she was just 22. Initially she was given the loading doses and for the next 6 years she was “just managing” on a 1mg injection of Hydroxocobalamin every three months. Six years ago she moved to a new home thirty miles from her old house. This, of course, necessitated changing doctors and her new GP assured her that one injection every year was perfectly adequate and that she had a keen interest in all things to do with haematology. Her patient was confused but felt helpless to argue against someone who was obviously more knowledgeable than her. You can probably guess what’s coming.
I’ll call the member Debra though that’s not her real name of course.
Debra looked awful. She told me she was constantly tired and exhausted all the time. She was having trouble keeping up with her work and had been off sick for the past two weeks. She told me about her two-year old son who she was unable to give her full attention to. She told me that nobody understood, not even her father and uncle who had both been diagnosed with PA but were managing on their three monthly injection regime though they did take sub-lingual sprays to supplement their inadequate treatment.
“I don’t understand why I used to get injections every three months and now I have to wait a year between them” she told me, almost in tears.
I felt her desperation, felt her bemusement and frustration at her doctor’s lack of compassion; she had lost all hope of a normal life. She told me she could see no future for herself or her family and she told me that I, or rather the PA Society were her only source of hope.
I went through her symptoms – they were all there, exhaustion, problems thinking clearly, memory problems, sudden mood swings, changes in personality, bizarre behaviour, irritability, tinnitus etc. etc.
And then she told me of how she had developed numbness in her legs in the past four years, how she had balance problems and how the pins and needles in her hands and feet were making her life a misery. She told me of the constant burning in her legs and feet and how she just felt like crying all the time.
So what could I do? Well I know what I couldn’t do. I couldn’t challenge the doctors’ clinical decision. I couldn’t call her and point out that she was slowly killing her patient. All I could do was to hold out a lifeline to Debra by assuring her that one way or another we would find a solution to her dilemma whether that involved her doctor or not.
And so I printed off the library leaflet about Treating PA along with the Update for Medical Professionals (a summary of the new Guidelines from the British Committee for Standards in Haematology); I told her that the first thing we need do is to tell her doctor about the meeting she had had with me, and that I had told her that she wasn’t getting treated as she should be treated. This is what I tell all members who call and are having problems getting their doctor to read the literature that we produce. I tell them to blame everything on us; that we had told her about how she should be treated – as an individual, that we had told her that many of our members need much more frequent treatment than the three-monthly regimen and that we had discussed alternative treatments but would prefer if Debra worked with her GP than against her. I told her to blame me for suggesting that the nerve damage was almost certainly due to her inadequate treatment before telling her that, at the end of her next consultation, she was to tell her doctor that she is welcome to telephone the office to discuss all of this.
You see, individual patients who have ‘researched’ the internet and print off leaflets stand little or no chance of getting the doctor to read what they have found. But, by blaming us, the society, for feeding them the information doctors are much more likely to read what is presented to them – especially if it has our logo on it which brings with it the reputation and kudos of our brand.
Reassured that if her doctor didn’t listen to reason then we would find another way of treating her according to her needs Debra walked away from our meeting with just a little glimmer of hope for the future.
And then came the email I mentioned at the beginning.
“Hi Martyn, thought I’d let you know that the doctor has agreed to giving me loading doses and revert back to 4 injections a year. I showed her your info and explained that my treatment for my diagnosis from age 22 should never have changed. Also showed her the guidelines and she took a copy for my record. Thank you so much for your help”.
Hopefully the doctor will disseminate the information Debra had given her to the other physicians in the practice and beyond.