Pernicious anemia being stopped

[Kmt3]

Pernicious anaemia I suffer with and have had b12 jabs for 28 yrs due to this corona outbreak my doctor won't give me mine which is due next week i have mine 8 weekly..... There saying wait till end of July...... Am i at risk im worried and the doctor doesn't seem to care

[Nackapan]

Complain. In writing. You should get your injection or at least a prescription to si. Look at the many posts.

[clivealive Forum Support]

Ask to see if the practice nurse is still working as an appointment should be able to be made so that you see just her to give you the injection.

This has happened for me and many others on here

I wish you well

[Sleepybunny]

Hi,

I'm sorry to read your jab has been delayed.

Injections stopped due to pandemic

Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Most recent blog post about stopped injections

b12deficiency.info/blog/202...

Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.

Have you considered joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

Support group meetings are cancelled during pandemic.

Some people are being given 50mcg cyanocobalamin tablets instead of their B12 injections.

In UK, B12 injections from NHS have 1mg of B12 in them and are usually hydroxycobalamin although a few people have cyanocobalamin injections.

In UK, the 50mcg cyanocobalamin tablets are normally only prescribed for dietary B12 deficiency. For B12 deficiency due to gut absorption problems eg PA (Pernicious Anaemia) , Coeliac disease etc then injections are recommended.

Concerns about treatment

If people are concerned about being moved onto oral tablets, B12 jabs being delayed or stopped then worth expressing concerns in a polite letter to GP along with any useful evidence eg references to UK B12 documents/articles that back up your concerns.

I also suggested on another thread that people who have had B12 injections changed to oral B12 tablets or have had B12 treatment stopped totally might consider keeping a daily symptoms diary and then keep GP informed by letter if and when symptoms start returning.

I feel it's helpful to have any concerns in writing so there is a paper trail in case there is a need to make a complaint in the future.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I believe WHO, World Health Organisation has classified b12 as an essential medicine which to my mind means it shouldn't be stopped or delayed.

CAB NHS Complaints

citizensadvice.org.uk/healt...

In normal times, local MPs may be interested to hear from anyone whose B12 injections have been stopped.

I wrote a detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

There's a lot of threads about people having injections stopped/delayed/swapped for oral tablets on the forum. If you have time, I suggest reading some of the other recent threads on this topic.

For example,

dvanian22 suggested explaining to GPs what the word "Pernicious" means in a recent post.

I think it's helpful to point out the potential physical and mental consequences of delayed or withdrawn B12 treatment which could include an increased risk of neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

[Pnelancs]

I posted a couple of weeks ago that my surgery was willing to do the injections but had absolutely no PPE, so after discussion with the nurse I decided not to have it. We said I’d contact them in two weeks or so.

When I rang them back, the reception told me the surgery was now closed and they weren’t doing any procedures - she told me there was ‘this coronavirus thing going on’ to which I replied I had heard something about it! Anyway, I asked for my nurse to ring me back, which she did and she explained that because my levels were so low they’d do it in the car park. I turned up later, sat in the car whilst she injected me and drove away. Surprisingly very easy.

I’m a little concerned that they made an exception for me because of my low levels and I’ll have to investigate that when things return to normal. I have previously been told that my levels don’t sky rocket after an injection like most people’s do, so I presume it’s linked to that but obviously that’s for another day at the moment.

[Sleepybunny in reply to Pnelancs]

Hi,

Might be good to start your own thread with this story. People who are struggling to get treatment could suggest this to their surgeries.

[GGourmet]

After years of battling my GP surgery for treatment and now on 2 monthly injections I was surprised when after cancelling my scheduled appt due to COVID, I had no problems rescheduling after recovering. There is one GP, a senior practitioner nurse and a practise nurse working because they know that things still need to be seen or injections given. The GP that saw me diagnosing Shingles just yesterday was one that 3 years ago declined treating my B12 deficiency. I am impressed when comparing against your experience.

[ShebaT]

On 06 Apr 20, I was told by my Surgery receptionist that B12 injections were not being administered. I was told to contact the Scottish NHS helpline to get more information . I did, the on-line service was closed and the telephone line advised a wait of 2 hours if I stayed on the call. This was no good at all. When I advised the receptionist of what was happening in the real world her reply was, "you will have to be patient and wait for the NHS helpline to answer". This would not only add to the congestion on the line but would stop more needy people getting help.

That afternoon, I emailed my local Scottish MP, the Doctor Surgery and the local paper. I attached a link to a Pernicious Anaemia Society (PAS) report prepared by Willemina Rietsema GP in Oxfordshire. I included advise that the World Health Organisation classed Hydroxocobalamin (B12) as an 'essential medicine' and included a summary of Wikipedia's report on B12 and how essential it was for P.A. sufferers .

On 07 Apr 20, the local paper editor advised that she was interested in what was happening and they might run a piece on it.

On 08 Apr 20, my local SMP wrote to the Scottish Health Minister and the British Medical Association (BMA) to advise that treatments such as B12 injections should not have been stopped by Local GP's and that this was part of an agreed government strategy in dealing with the current COVID -19 problems. She also copied in the BMA media people.

On 09Apr 20, early morning , I was emailed by my Doctor's surgery and advised to turn up at 8.30am 10 Apr 20 to receive my B12 injection.

I was given the injection this morning, it was one week late but that is not too bad. I have thanked my SMP and the Doctor's Surgery for the help. It may well be that someone in the medical chain has got the wrong information about how essential B12 is to certain people,

To close, I hope that this shows how I and my local SMP managed to get a speedy resolution to what may well have become a major problem. I wish you all the best in getting a similar solution.

Regards and keep well. ShebaT.

[Kmt3 in reply to ShebaT]

Thank u i have emailed our local mp and have written a letter to the doctors surgery as ringing is pointless lthe receptionists are rude on a good day so u can imagine now..... Someone has told me about an under tongue spray for b12 I know not same strength etc but might be worth a try but at 11 pound for a small spray it's alot to pay out at the min..... As i was told yesterday its government guidelines not a government instruction pleased tho I'm not the only one with this problem

[Sleepybunny in reply to ShebaT]

Hi ShebaT,

So pleased to read that you have worked things out and impressed by your SMP's efforts.

Might be worth posting a version of this as a new thread if you have time as I'm sure it would be of interest to other forum members.

To anyone reading this thread, do MPs in UK, SMPs in Scotland, AMs in Wales, MLAs in Northern Ireland continue to work during Easter break/recess?

[feegee26 in reply to ShebaT]

Good to hear you got your jag - well done!

My surgery has cancelled my jag and said they are cancelling them for a year! I asked to SI and was told no.

I too have emailed my msp (Aberdeenshire) hopefully they will be as good as yours in sorting it out.

It's crazy not one gp actually knows anything about pernicious anaemia.

If I hear anything i will update on how i get on.

[briarhillcat]

You are so right! My surgery have postponed for a year as well. They really do not understand that it is essential. I am so worried. I have two injections at home and am considering doing it myself. I just cannot understand why this is happening. I know when my injections is due a couple of weeks before as I feel, exhausted, dizzy, all kind of horrible symptoms. I just do not know what to do. The receptionist would not even let me talk to the doctor, and said "We will send you a letter explaining everything" . Not acceptable. We all all need this injection. The pharmacist sold me some cyanocobalamin tablets, but do not think they will work as the intrisic (sorry spelling wrong) factor in your stomach throws oral B12 out. Any ideas would be lovely. Thank you.

[Sleepybunny]

Hi,

Hi,

I'm sorry to read your injection has been delayed.

Injections stopped due to pandemic

Have a look at these two links which both have ideas on what to do if jabs cancelled/delayed/swapped for oral tablets because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Most recent blog posts/news items about stopped injections

b12deficiency.info/blog/202...

pernicious-anaemia-society....