There’s nothing like a little arithmetic to get people’s attention – just like it got yours.
I shall explain this little enigma.
At the beginning of the week I was aware of two members of the society who had had their injections stopped – just like that! Out of the blue they were told that the replacement vitamin injections that were keeping them alive were not being prescribed any more. I don’t want to go into the reasons given because it just annoys me to think that intelligent caring doctors can behave so irresponsibly.
We get to hear about these cases on a regular basis and it takes up a lot of my time. There are several stages that have to be tackled.
Firstly, I suggest that the member go back to their doctor and tell them that they have spoken to the PA Society and that we, nobody else, but we have told him or her that injections are for life for patients who have been diagnosed as having PA. That usually does the trick and the injections are re-instated.
If that doesn’t work, then I ask for the name of the Doctor who has stopped the injections along with the name of the Practice Manager and the telephone number of the health centre. I also ask for the name of the Clinical Director of the NHS Trust of Central Commissioning Group that the surgery is part of. I will also need the patient’s name and date of birth.
The second stage involves me telephoning the Practice Manager stating that patient X has had his or her life-giving injections stopped, mention the new guidelines and ask that the matter be reviewed in light of my call. I am usually asked to put that in an email. Things usually get resolved at this point.
If the injections are not re-instated then I have to write to the Clinical Director pointing out the problem. I remember that on one occasion I had a call from a member whose injections were stopped and it had got to this stage. She phoned me on the Monday morning to tell me that the Clinical Director had received my letter on the Friday morning and had telephoned her later that same morning and told her to report immediately to the local A&E dept. of her local hospital where they were expecting her and would give her an injection there and then. I never knew what happened with the surgery or doctor involved in the original decision to stop the injections but I imagine there might have been a colourful telephone exchange.
Anyway, as I was saying. At the beginning of the week I had two cases of stopped injections. One was at stage one and one at stage two. On Wednesday I was made aware of another. Then, out of the blue yesterday I had two results. The first was at stage two – I’d telephoned and written to the Practice Manager the previous week and we had decided to wait a week to see if the silly decision was overturned: here’s what the email said:
Martin Hooper, I cannot thank you enough for all your help.
In short, I was lucky enough to have an amazing GP he diagnosed me 10 years ago but it took us about 3 years to figure out the best treatment plan for me. In the end he was big enough to admit that not much is known about this disease and authorised four weekly injections to keep me on an even keel.
Then he retired March 2015!!!!!
My new GP did an IF blood test and without so much as a phone consultation to discuss my symptoms and ignoring the expertise of my former GP stopped my treatment by way of a phone call from her receptionist. The same day I booked an appointment with a doctor to discuss this and on arrival my doctor had told the receptionist that I was not important enough to be seen that day. I could tell the receptionist was very embarrassed about having to deliver this information.
This is where Martin came in. I was very distressed and scared when I first spoke to him. He immediately took control and reassured me that this would be sorted. He told me where the information was that I needed. My doctor chose to ignore me. On hearing this he contacted my surgery on my behalf, pointing out current guidelines etc.
He went about this in a very professional manner and thirteen days after having my treatment stopped I had a call from my surgery to say my doctor had restored
treatment. She is obviously licking her wounds as she could not deliver this information personally. It must have stung to have two-year old guidelines pointed out to you.
Martin is doing amazing work to increase the profile of PA and again, I cannot thank him enough for the help he gave me. I am sure that my GP would not have listened to me alone. His intervention was priceless and has put an end to an incredible amount of distress and anguish.
You are a marvellous man!!
And then another email yesterday afternoon from someone who was at Stage One:
I mentioned the Pernicious Anaemia Society and that I had talked to the helpline and they told me that I had spoken to the helpline. The doctor gave me an injection immediately and told me to make an appointment for a monthly injection with the nurse
So you see – we started out with two cases, added another but then subtracted two that were success stories.
That still, however, leaves one member whose injections have been stopped.
She telephoned the office yesterday in a dreadful state. She was diagnosed eight years ago and was managing on 10 weekly injections. They were stopped suddenly six months ago. She is struggling to think straight, has pins and needles in her hands and feet and is stumbling while walking. She is breathless, in a continual ‘fog’ and her vision is failing. She also has raging tinnitus. Both her mother and her grandmother have PA. She’s been told that her B12 levels are “fine now” and that she “doesn’t have Pernicious Anaemia any more”. She has been told that her symptoms were “probably migraines”.
I told her to start out on Stage One of the procedure and she’s made an appointment to see her GP today to tell him that she’s spoken to the society and that we’ve told her that there is no cure for PA and that we’ve told her that she needs injections for life. She’s going to telephone on Monday morning to let me know if we need to proceed to stage two.
Oh – by the way, she’s six months pregnant.