The last two weeks have been a very testing time for the society. This is because various professional bodies have issued Guidelines to doctors and other health professionals on how to deal with the unfolding Covid-19 pandemic. The British Society for Haematology (BSH) published their Guidance on treating Pernicious Anaemia during Covid-19 two weeks ago. The Guideline, like other that have been written, sought to minimise the risk of cross infection to front line and ancillary health professionals who, as we all know, are risking their lives to help save others. At the same time, the Guidelines seek to minimise disruption to patients. The Pernicious Anaemia Society realises that healthcare workers are extremely vulnerable at this time and fully supports the efforts being made to minimise the threats to front-line health professionals. At the same time, we want to minimise the disruption to patients’ treatment.
The Guidance from the British Society for Haematology caused a huge strain on this society resources as concerned patients, or rather frightened and terrified patients were being told by the GP’s that following the advice of the BSH they have enough B-12 stored in their liver that they will not need an injection for a year or even longer.
Patients with Pernicious Anaemia, and their families, were unable to reconcile this latest advice with the information that they were given at diagnosis that their treatment would be a life-saving injection every month, every two months or at the least every three months. And this led to us being inundated with telephone calls seeking clarification.
We were pleased that two of our health professionals were able to contact the BSH and arrange for an online meeting to take place on Friday 17th April. The Chairman of the PA Society, Martyn Hooper, and Petra Visser, PA Society Webmanager and Chair of the Dutch B12 Foundation, were asked to attend the meeting with the Haematologist who had been given special responsibility to issue a raft of Guidelines for dealing with all manner of blood disorders during the Covid-19 pandemic.
The meeting lasted over an hour where a whole range of biochemical and medical evidence was discussed. The next day the BSH representative issued a new draft guideline that the attendees were asked to comment on. Thankfully, the advice that patients had enough ‘stores’ of B-12 in their system to last them a year was removed. During the consultation period Martyn had provided the BSH with the ‘best practice’ advice from the Welsh Government which had been produced after he had written to the Chief Medical Officer and the Minister for Health at the Welsh Government. This stated that patients should undergo a telephone interview with their healthcare provider on the day of their appointment for their injection. If the patient had none of the symptoms of the virus then the injections should go ahead. Over the past week emails have been exchanged several time a day with the participants all having an input into the content of the emerging guideline.
The draft guideline underwent several changes, and Martyn and Petra were pleased that their suggestions were not only listened to but acted on and the new Guideline on treating Pernicious Anaemia were issued yesterday.
This society is pleased that we were asked to play an active part in the development of the guideline as the bona fide representatives of a large patient group. And we are also pleased to report that the BSH is now going to revisit their 2014 guideline with a view to updating it – and we are excited to have been invited to be involved in the process and, of course, we will be happy to do so. Now that we have forged links with the BSH we look forward to being involved in all manner of activities in the future.
Our thanks go to Mr. Julian Owen for setting up the dialogue and meeting and to Prof. Martin Warren for acting as scientific consultant on behalf of the society.
The new Guideline:
Clarifying the new BSH Guidelines
- The Guideline has been produced to deal with the current Covid-19 pandemic. It is not a general guideline but has been produced to help doctors make the right decision about treatment during the lock-down period.
- The previous guideline advised doctors that patients with Pernicious Anaemia can safely have their injections stopped for a year as they will have sufficient stores of B12 in their liver. Many patients were then told by their GP or nurse that their injections would be stopped for a year. This led to patients who are members of this society and a great many who are not, telephoning the office asking for advice.
- We set up a meeting with the BSH and informed them that the guideline was frightening patients and would probably lead to them developing irreversible nerve damage. The BSH listened to what we said and asked what we would want included. We suggested that the whole issue of the liver storing B-12 was wrong and that patients should be interviewed on the day that their injection is due and if he or she had none of the symptoms of Covid-19 then their treatment should go ahead. We also suggested that, as was advocated by the RCGP a week or two earlier, that patients be instructed on how to self-administer their injections. The BSH took on board what we had to say and issued a new guideline that is a much better approach for patients and medical professionals during the current lock-down.
- The BSH couldn’t advocate patients being instructed on self-injection during the pandemic as it would involve medical professionals and patients risking cross infection of the virus, though this is something that can be considered once the pandemic is over.
- Patients who are currently self-injecting with prescribed B12 from their GP should continue to do so.
- Some members of this society take high or very high dose oral tablets in stead of injections though this is a tiny minority. If injections are not able to be given for whatever reason, then doctors can prescribe 1mg tablets. There are a number of problems with this however. Firstly, not all patients respond well to oral tablets and, secondly, the tablets prescribed are not guaranteed to be pharmaceutical standard and are instead regulated by the Food Standards Agency.
- Reacting to our concerns about the alternative oral treatment the new guideline states clearly that if patients experience any neurological symptoms – numbness or pins and needles – then he or she must contact their GP immediately.
Again, please be aware that this new Guideline is aimed at the current Covid-19 pandemic.
We are pleased to have been involved in producing the new guideline, and we will be participating in producing a new Guideline on the Treatment of Cobalamin and Folate Disorders later this year.