GP refusing to give b12 injections

[Dogsrock]

Has anyone else called up their surgery (NHS Scotland) to make an appointment for their regular b12 injection to be told that they are not doing these during coronavirus social distancing? I have to “maybe call again in a months time to see if they’ve resumed doing them again”!!!!

[Nackapan]

Many many posts on this.

You could try booking a Go telephone consult. Write in stating they are withdrawing essential treatment.

Look st PAS information pages.

I'm sorry this had happened. Ask for a prescription?

[Sleepybunny]

Hi,

I copied this from a reply I wrote on another thread.

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 posts/news items about stopped injections

b12deficiency.info/blog/202...

PAS statement published 11th April

pernicious-anaemia-society....

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 telephone helpline for PAS members to ring.

PAS support groups in UK

pernicious-anaemia-society....

Have you also considered putting any concerns about treatment into a brief, polite letter to GP?

In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.

Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.

People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.

If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.

If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2.

At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.

WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs

May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Symptoms Diary

I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.

I wrote a very 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.

[Dogsrock in reply to Sleepybunny]

Thank you very much for this, this is really good advice. Thank you x

[briarhillcat]

Hello Dogsrock. I also live in Scotland and had a phone call saying they are stopping them for a YEAR. Twice I tried to speak to a doctor and was refused. I have two ampoules here and a looking to self inject. I had a lovely answer from Littleisland which I tried to print off and it missed out the middle page, but I am so scared. I am a widow with no family living near by. I know how you feel when you go without B12 injections. There is a difference between B12 deficiency and Pernicious Anemia. That is where the stomach just throws out any oral B12. I am going to buy some needles and syringes and give them to myself . I know many other people are feeling the same as I do. We are all scared. Then on top of that there is the Corona virus. Good luck to you

[Ghound]

Hi, I'm fortunate that I've just got home after having my usual injection at the surgery.

Nurse was in full PPE . The surgery was empty, I was the only patient with nobody waiting outside and no cars in the car park.

It's disgusting and unethical that people are being refused treatment !

I hope you and everyone else with PA can can keep as well as possible.

Very best wishes.

I am in Aberdeenshire.

[briarhillcat in reply to Ghound]

Hello Ghound I live in Turriff. Cannot get injections for a YEAR - they said Government policy. What are we supposed to do in the meantime. I was told that the body stores B12 for up to a year. What a lie. We need them regularly. Am going down the self injecting road.

[JanD236 in reply to briarhillcat]

The body does store B12. However, if you have PA the whole recycling system for using the stored B12 is broken. Therefore, what’s in store is no more available to you than what you take in through your stomach.

[Ghound in reply to briarhillcat]

Hi Briarhillcat, I am in Westhill. That's shocking !!! Yes, I self inject in addition, as an eight week gap is too long for me. Take care, All the very best !

[Rhettie]

hello Dogsrock, I live in Scotland and have been refused my B12 injection which was due this week. I spoke to a doctor and asked for a prescription to self inject. He ignored the request. I explained I already have symptoms returning usually after 8/9 weeks. He implied I can't have symptoms as I have enough B12 from the January injection to last 2 1/2 years.

I am trying to source the ampoules on line.

Feeling rather desperate.

[briarhillcat]

Hello Dogsrock it is just getting more and more stupid. You cannot possibly have enough B12 to last 2 1/2 years. I really do not think they understand. I live in Aberdeenshire. No injections for 12 months. I have two ampoules here and sent off for needles etc, and I have tried to source on line. Two places had them but only send to pharmacies or doctors. So no good. Two places in Germany are not sending outside Germany at the moment. We will just have to keep going Good luck. (Sue - Crazy Cat Lady)