An odd title eh? Let me explain. The ‘two and a half’ refers to the two and a half hours I spent in the society’s office on Wednesday of last week. There was nobody in the office on Tuesday as I was in London for a meeting with the Chairman of NICE. There were 9 telephone messages from the previous day that I was dealing with and during that time there was another 7 ‘incoming’ calls. So in total I took or made 16 telephone calls. And the ‘5’ in the title of this blog refers to the number of those calls that were about patients, who have had a firm diagnosis of Pernicious Anaemia in the past but who have had their three-monthly injection stopped – stopped altogether. That’s five telephone calls from patients who are confused, scared, frightened and in one case completely distraught.
Helping these patients get their injections reinstated is a three-stage process. Firstly I write to the patient explaining that if they have Pernicious Anaemia then they will need replacement therapy B12 injections for life. I quote the Guidelines from the British Committee for Standards in Haematology that states quite clearly that patients with PA will need injections for life. The idea is that the patient then shows that letter to his or her doctor. Often that is enough for the injections to be re-started although very few get another set of loading doses.
If that doesn’t help then I can write or telephone the Practice Manager of the Health Centre. I explain 
that the patient has contacted us and we are extremely concerned about the way in which the patient is being treated. I cannot demand that the injections be re-instated because that decision is left entirely to the physician treating the patient. The GP makes a clinical decision and, as I’m not medically qualified I am in no position to tell doctors what they should be doing. All I can do is to point out to the Practice Manager that established treatment in line with the BNF and the Guidelines is not being followed. I then mention the third stage.
If the patient is still not going to have their treatment resumed I then write to the Medical Director of the
Central Commissioning Group or Trust in the patient’s locale. Who I will write to will depend on where the patient lives. I remember writing directly to one Medical Director who, upon receiving my letter, telephoned the patient and told her to immediately make her way to the local A&E Department where he had written out a prescription for her to have an immediate injection. So it does work but in most cases the injections are reinstated without any fuss and is usually done via communications within the local health service. Usually the problem is resolved before we get to this stage.
There is, then, a problem with some patients having their injections stopped. And it is a problem that is the cause of much distress to patients. How can this problem be eradicated? Well, if you read a previous blog about this subject I have written to two senior members of the Royal College of General Practitioners about this, bringing it to their attention and asking how we can work with the college to bring about an end to this practice. Disappointingly I have had no reply. So what do I do? Throw my hands in the air and shout “malpractice! unfair! doom! gloom!?” No, I’ll try again. I will write again and this time send the letters by recorded delivery. I will also write to the Secretary of State for Health and the Ministers for Health in N. Ireland, Scotland and Wales. I will do only what I can do – raise awareness of this problem. It will be for others to bring an end to this far too common problem.
The fact is that I shouldn’t have to do this. But what else can I do? Ignore the patients? Shrug my shoulders? You should know that those actions are not an option for me.
t’ll keep you informed….
Thank goodness you are there to speak up for these people. Shocked to hear that someone with a firm diagnosis of PA can be deprived of their necessary injections.
oh do please keep at it….. do you think the petitions which are around will help in any way? how can I help – I have written to my mp but so far no reply,
My sister had been misdiagnosed years by her surgery years ago with CFS/ME and eventually dementia. She had confided many of her health problems with me, especially as we both had Hashimoto’s disease/family history of autoimmune disease and I had begun to research B12 deficiency.
Our whole family are very dissatisfied with the way her surgery has handled our concerns. With sister’s permission, we had presented latest BMJ research document with BCSH, NICE, UKNEQAS, guidelines, etc., as well as links to B12/thyroid/psychiatric disease but these were all ignored. The surgery’s subsequent lack of communication/continuity of care with the family or understanding of B12 deficiency/memory problems allowed her to deteriorate so badly that she is now being detained in a mental health unit and B12 injections stopped.
The family firmly believe the physical/psychological/neurological symptoms were caused by failure to read, understand, diagnose and treat her low B12 from the outset according to the BNF guidelines for low B12 with neurological symptoms.
The frustration I’m feeling at the whole system is how I imagine people must have felt when they tried to alert the world to the holocaust victims.
Dear Martyn,
What can I say? It is truly shocking that this is stilll going on. I cannot understand that doctors can do this when treatment for life is acknowledged foe anyone iagnosed with P.A. How do they justify this?This should not be happening in 2016. Thank goodness that you help them.Bless you Martyn.
I think I’m one of the five. If not, there are many more of us out there. My treatment from my GP has been identical to that received by Rosemary’s sister (see above). My condition has also deteriorated but luckily enough I don’t have mental health problems.
Speaking to Martyn and joining the PAS has made such a difference to me. The support has been fantastic and members have been so keen to offer support, advice and information.
Thank you one and all. I will shortly be self-injecting and hopefully on the way to better health.
The lack of treatment and support is nothing short of a disgrace!
Keep up the good work Martyn.
Thank you Martyn for all the amazing work that you do.
Re. GPs – yes they have the medical degree but it is fair to expect that part of being a good medical practitioner is to uphold the Hippocratic Oath, keep up to date with latest official guidelines and research, as well as respect for patients, experts and other knowledgeable people such as yourself, especially when PA/B12 deficiency has been known for many years to cause severe neurological/psychological and physical disability for so many people with devasting results for patients and families.
Petitions, letters to the Health Secretary and questions in the House of Lords have fallen on deaf ears. How long does this have to go on before anything changes……