The new C word

I know we’re all up to our necks in Coronavirus blogs but I hope some of the following helps.

UK GP’s
My Practice sent a message late last week saying nobody can have a face-to-face appointment with a doctor. B12 injections are still being given by nurses – as long as the patient doesn’t have a cold or any other flu like symptoms.

But what if they do? And what if you are being shoved to the back of the queue and being told your injection is non essential?

Each practice is going to have a different take on this so it will be down to individuals to try and find a solution from your Practice. It may be that they have something in place on their websites so check this too.

Perhaps there is someone close to you who would be able to give you an injection if you can get your ampoules on prescription?

Perhaps you could ask if a loved one who is well, could be taught to give you your injection whilst we’re in this chaos.

Or ask if there could be provision at your Walk in Centre?

Unfortunately your Pharmacist can’t give you your injection unless there is a Service Level Agreement (SLA) or a Standard Operating Procedure (SOP) in place.

Remember that B12 is listed by the World Health Organisation as an essential medicine (see page 19) and B12 injections are necessary, just as insulin is necessary for a diabetic.

There will be a way you can get your injection and your Practice owes a duty of care to make sure it happens. We just need to try and stay calm and be a bit more patient during the crisis.

The following statutory NHS Bodies are responsible for commissioning health care services so if you are struggling please contact yours;

Find your CCG here if you are in England

Your Local Health board in Wales

NHS Scotland Health Boards

Local Commissioning Groups Northern Ireland

The news
I haven’t chosen to watch the news or read a newspaper for years years because for me it’s depressing and damaging. Currently it’s wall to wall panic with coronavirus.

I was annoyed with myself for becoming glued to the end of a TV report on Madrid and the Spanish State of Emergency on Sunday night where a lone person in a Square was told to go home and stay inside by the police.

This part of the whole crisis made me worry, it interrupted my sleep. I can’t imagine being separated form other humans in this way. I’m already walking around holding my arms by my sides like an Irish dancer, resisting my natural urge to touch people. We are social animals and although some personality types thrive on periods of solitude, mine really doesn’t.


Freedom
The thought of not being able to walk freely, being isolated and being separated from their communities and families may be a bigger terror for people than than catching the virus itself.

So, I’ve had a word with myself, I will not watch anymore news and I’ll deal with any restrictions as and when they might occur.
I will not begin to panic buy.
I’ll do what I advise others to do and that is to set aside only ten minutes out of any 24 hours to worry and leave it at that.
Worrying does absolutely nothing to help anyone, but it does cause us great stress, so conserve your energy and focus on other things that you can effect.

Wildly unthinking behaviour
The meaning of panic -as if you didn’t already know!! Is: sudden uncontrollable fear or anxiety, often causing wildly unthinking behaviour.
This wildly unthinking behaviour clearly helps no one – but is naturally contagious.
I went to a supermarket on Sunday and asked a staff member how she was feeling, she looked exasperated, saying “It’s worse than Christmas“.
These staff are on the front line too, some feel physically knackered by their increased workload, some are also panicked but are carrying on. They’re dealing with fraught customers and the extremes of panic buying, refilling shelves as quickly as they can. They deserve thanks, kindness and calmness at this time.

If Anxiety is part of your B12 deficiency picture then watching the news is going to make you worry about the world at large and your own health. So if you can STOP it or at least limit it, what you do need to know will filter through.
Why not download apps such as Headspace or Calm these may help if you are struggling with rising levels of panic?

Christmas 
If this feels like Christmas to staff in shops and supermarkets then perhaps the best way we can get through this is to treat it like a Christmas break. If there’s nothing we can do why not use this period as an exercise in self-care, get jobs done that you have been meaning to do for an age.
Maybe…..
Have Epsom salt baths
Sort out your wardrobe and cupboards, learn to fold like Marie Kondo.
Bake – if you have any flour
Declutter, so that when this calms down you feel renewed & ready to start living normally again
Start to learn a language or to crochet.
Make soup, there’s plenty of fresh food
Watch your old DVD’s and Netflix Watchlist.
Sort out your photographs
Delete unwanted emails
Finish your unfinished projects
Read that pile of magazines you’ve gathered up over the years
Get that jigsaw out
Weed the garden
Skype your loved ones, write letters, get in touch with long lost friends.

Rather than watching news try and make a point of only watching uplifting things. Watch comedies, funny is better for your heart and soul.

We’re not being made to stay inside, not yet at least, so get outside info the fresh air.
Do things when you feel like it and rest when you don’t.

Take some vitamin C and some zinc. Don’t do like I have in the past and take zinc on an empty stomach, it may make you vomit.

Pull together
If you have been caught up in the hysteria of panic buying but now you can’t move around your home with out banging into your purchases, it’s time to find your local food bank. These are not doing well at all. Remember not everyone could panic buy even if they wanted to.

This is a time to pull together (at a safe distance) rather than to separate, it’s a time to connect with neighbours, if you don’t know their telephone number already, get it and give them yours. You may need each other. Check on people living alone, drop a note through the door to see if they need anything if you feel you can.
Shop local, support the independents, they may still have loo rolls!
Keep safe, wash hands, hello with elbows and limit the news.
Best wishes
Tracey
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69 thoughts on “The new C word

  1. My surgery called to remind me that my B12 injection was due, and said I could collect a prescription for tablets instead. I refused and said I would self-inject and they said they will note this on my file.
    I have been self-injecting between the ‘sanctioned’ jabs for a couple of years and never told them before. I suspect they will not approve, but honestly, why would you prescribe tablets to someone who doesn’t absorb the stuff?! I may even confess how often I inject 🙂

    • Hi Ruth. My surgery told me they couldn’t give my injection and refused to supply the ampule for me to self administer. I’ve been a psychiatric nurse for 32 years I administer depot injections every day. Gave me high doses of tablets. Totally useless. I’ve relapsed terribly. Injection going to be given next week. I didn’t know of anywhere I could purchase an ampule to self administer. Could you advise me please??

  2. I had a text from my gp practice on 18th March (I am in the East Midlnds) to say all B12 injections will be suspended for one month. I normally have my injections once a month (had a good doctor, now retired). I also learnt to SI in April 2019 and have been injecting every 10 days (including my practice jab). I only started to SI because I still felt unwell (B12 injections from GP started 11 years ago – I have nerve damage in my feet and legs, had nerve conduction tests). The SI has stopped the diarrhoea I had for 14 years or more. I did ring the practice to register my complaint and asked if my injections would be reinstated after the virus is over and was told, yes, I did say I was self-injecting too. My GP knew that though I never did tell the nurses. Things have moved on so I don’t know what the practice stance is now on it.
    I am sorry Tracey all your hard work was deleted, I just can’t believe that, it just does not seem right. Thank you for persevering and starting again, I can’t imagine how much time it takes up. I have a flavour of it as I have been trying for 18 months to convince drs and endos I need treating for thyroid (thyroid probs and B12 deficiency/PA often go together). I have PA by the way. I have now just started self-treating for thyroid – another area where doctors need to learn more!

  3. I was due my B12 on the 16th of March and after contacting my GP around the end of the month, was told due to the Coronavirus pandemic that B12 injections would be suspended to protect both patients and staff from unnecessary risk and that I could try over the counter high dose B12 tablets but I should be saturated enough not to be effected by not having my injection at this time (?) but if I was severely struggling to contact them again and they could see what they could do. A week later I received a standard issue letter saying similar to the above but could also ask to continue to have the injection at special B12 clinics that they’d be running. I have a compromised immune system due to chronic illnesses and do not want to go to the clinic unless 100% necessary. The tablets that I was told I could try we out of stock!

  4. I was informed yesterday my b12 jag at my surgery is cancelled for this month and no jabs for a year! I had to ask twice to confirm she said a year. She advised over the counter supplements i replied no good as I get jabs as I can’t absorb b12. I asked if I could self inject she asked gp and was told no.
    I have sent an email to my local msp. I am not sure what to do now.
    It’s soooo frustrating

    • Hello Fiona, I was told the same. no jabs for a YEAR. This is in Aberdeenshire and they said it was Government policy, they would not let me speak to a doctor. I am so worried. What are we supposed to do? Tablets do not work, as I do not have the intrinsic factor which makes all oral B12 just throw it out. It is bad enough with the Covid 19 and then this. I just do not know what to do.

  5. I am due my B12 injections but surgery will not do them was told to buy b12 from a chemist , wrote to my MP and AM/AC who were great and contacted the surgery , the surgery repkied saying they were not doing injections , however if I am experiencing severe symptoms they will conference call me ….. If I get severe symptoms I will not be able too . I also have degenerative disc disease and facet joint injections cancelled, and fibromyalgia. My mental health is suffering as well as physical health .

  6. Hi Tracey,
    I’ve been allowed 3monthly injections until now – no more as “the evidence shows it gives you no added benefit to have injections more frequently”. I start to feel the need for my next injection well before it’s due. My next one is due on Thursday. This afternoon I’ve had the text cancelling it because I don’t have PA. As with many others, not having PA is why I was given the injections in the first place. Thanks to your FB page I was expecting this and have managed to ask questions about the decision. After speaking to one of the GPs I was told that it would be reviewed in 6 weeks instead of the 6 months she initially said – I’m now waiting to speak to the practice manager. Ridiculously the cancellation is the thing that’s finally pushed my anxiety over the edge into meltdown. As an added bonus, by cancelling my B12 appointment they’ve also cancelled my blood tests done at the same time as the injection, which I need to check the drugs I take for Rheumatoid Arthritis aren’t destroying my liver. They’d not noticed that until I told them, and they haven’t rebooked it even though they said the tests are essential.
    Sorry for the essay, but thank you for all you do.
    Kath

  7. Both my parents had theirs cancelled for 6 months. They challenged this and then my Mum got a reply saying she does not need injections as she does not have PA despite receiving injections since 1997!

  8. Can’t see my post, but I rung and the receptionist said they are not doing b12 injections and just giving tablets, I complained and said I nearly died you are not cancelling or delaying it I need the injection. She put me on to a consoltent who was a popas (can’t say the word) saying why cant I take tablets I explained I nearly died, I got angry and he threatened to put the phone down on me, I said If you had to fight all the time to what your entitled to you would get angry as well. Another 4 times he asked me I refused the tablets he said they might book me in for my jab on the 29th when it’s due but I think they was fobbing me got no letter, now they are refuing to talk to me

  9. I have been refused my routine 8 weekly b12 injection due to covid-19, my surgery didn’t offer any alternative options, no future bookings, nothing – even though I explained I was already struggling with symptoms! They said I would need to wait til this is all over!! Who knows how long that could be!! I fortunately managed to find a pharmacy offering this service privately!

  10. I hope you won’t mind me leaving a message here, because initially I got a text from my practise manager cancelling my now overdue B12 injection due to Covid 19.
    I rang the surgery weekly for 3 weeks, finally asking about self administration, to be told no, it was far too dangerous and risked serious adverse reaction. Why were others being offered this?? …

    I decided to read up and approach my local health board. They unhelpfully suggested to my GP about giving tablet with good results,(backed by no evidence)

    However, having complained,this definitely got my Drs back up.

    He dug deep into my records and rang me on a very bad line, to ask when was I diagnosed etc, then dropped the bombshell that he will be withdrawing all B12 Treatment due a single negative IF blood test.

    I’ve written a long account of my situation on the other page – when our treatment is withdrawn and you’re subjected to more blood testing. So I won’t put the full account on here.

    This is the biggest medical scandal of our age, being brushed under the carpet, due to Covid 19.
    More lives will be affected and lost.

  11. Received my letter yesterday stating that my injection had been cancelled and if concerned about symptoms to take tablets. Currently putting together an e mail to send to my practice.

  12. My 8-weekly B12 was due yesterday, I phoned the surgery on Tuesday to see if the appt was still good. I was told to phone back on Weds morning and the nurse would call me back and arrange a time to meet me in the car park to give my injection. I did this and they called back to say they weren’t doing injections, it was okay to skip this round and I should give them a call back in a couple of months to see if things had changed. Suggested I took tablets. I said tablets and patches didn’t work for me (I’ve been getting injections for about 18 years) and the reply was “Oh well, give us a call if you get any symptoms and we’ll see what we can do.” I’m a frontline healthcare worker and I gave my ampules in my kitchen. As much as I’m terrified of needles, I did it myself and the stress it causes me is still upsetting me now. I’ve been told that having injections any more frequently than 8-weekly won’t make any difference, so why would I think they’d believe me if I said I was having symptoms? Extremely deluded and let down.

  13. Hello. I just had a text from my doctors surgery postponing my b12 injection for 3 months (due end of May). They are saying in their experience patients still have high b12 levels way beyond their usual injection date so we are confident it is safe to postpone in the majority of cases. I am going to write a letter to my gp surgery.

  14. Two weeks ago I rang the surgery to arrange my appointment for my B12. I was already two weeks late as I had had a heavy cold. I was told all B12 injections had been stopped, I was not offered any alternative or told when injections would resume. I am now one month overdue and the symptoms of fatigue and slowness of thoughts are increasing.

  15. My GP has cancelled all B12 injections due to the Coronavirous. I am now 2 weeks overdue for my 12 weekly injections. (I start to get tired after 10 weeks) I now have extreme fatigue, a sore tongue, burning and tingling feet and I have noticed I seem to be loosing more hair than normal. I emailed my GP with these details and this is the reply “We are currently working very hard keep patients away from the premises in order to help reduce viral spread.

    We are currently prioritising the most essential treatments for those patients who are most in need

    B12 is indeed essential for some people but for most it is not critical to have 3 monthly injections. We are dealing with the need for B12 on a case by case basis but for now we have postponed everybody who is due a B12 injection for the next 2 weeks because we are confident this will not cause harm.

    This is supported by guidance from Hospital Consultant Haematologists.

    As you do not have an underlying medical condition that critically requires B12 injections every 3 months, you will almost certainly not experience any adverse effects from a delay.

    We will be in touch again in 2 weeks with more information.”

    I have now written again to my GP asking that I be prescribed with the necessary equipment and B12 ampule in order that I can self administer. I asked that a nurse show me how to do this but if that’s not possible I will follow an instruction on you tube. I have pointed out that the neuropathy in my feet make the B12 injection critical. So watch this space.

  16. I have only just been diagnosed with B12 deficiency in the past month and managed to get 4 of my loading injections before the final one was cancelled due to Coronavirus with the advice to take supplements and come back in 6 months for a retest. I had to fight for the 4th jab after turning up to an appointment that had been cancelled( wasn’t informed)
    My symptoms were so severe I hadn’t been able to work for several weeks , although the symptoms had gradually been worsening over what I believe to be several years with B12/ folate deficiency and mild anaemia.
    I am supplementing but have always taken a multivitamin due to a bowel condition so just taking an extra B12 to see if this helps.
    I’m dreading a return of the debilitating symptoms of the deficiency which left me unable to function! And with this all being so new I am still finding out about the condition and looking for support and guidance.
    Hoping that waiting 6 months won’t leave me back at square one!

  17. Mine has been cancelled due to ‘all’ appointments being cancelled. Asked if i can self inject and was told no. Managed to get everything online so will be doing it myself as i cannot live without it. My anxiety has been through the roof with the worry this has caused. Surgery receptionist made me feel like i was wasting her time when i explained how worried i am.

  18. A nurse from the surgery phoned to tell me I couldn’t have my b12 for 6 months. I really struggle without it; exhaustion depression anxiety. Within 12 hours of having it I feel totally different. This week my 88 year old Mum fell and broke her hip I am planning to go and help her when she gets out of hospital. The nurse was really rude and said I should be glad that I was only waiting for my b12 and I was lucky I didn’t have Coronavirus. I know they are under pressure but there must be a way around this.

  19. My GP told me today that my B12 injection had been cancelled, despite me phoning up to check yesterday and being told it would still be today. I was treated horribly by the receptionist who seemed to think she knew everything, telling me that I didn’t have any medical conditions when I have diagnosed pernicious anaemia! She then told me to take a multivitamin! I stressed that I wanted to speak to a doctor and she replied that all doctors were now not speaking to anyone due their B12 injection and that was now their policy. I have been left shocked and upset, together with worried for my condition. My partner has ordered patches and drops from the net which I hope will minimise the effects of not having my injection. I just don’t see the sense in stopping essential treatment, thus leaving many people unwell and potentially needing hospital services.

  20. I have been informed by my doctors surgery that my pernicious anaemia which needs.B12 injection is not in the list of government necessary medical condition. I am 69 years of age and my injection was due last week. At present my energy levels have dropped completely and every bone in my body is aching. I have a headache that will not leave and I am so depressed. The reason for getting the injection is because my body can’t absorb the vitamin naturally. What happens to me now with my immune system so low.
    Someone needs to stand up and ask those making this ruling have they or someone belonging to them ever suffered from this condition and been denied the remedy to ease the symptoms.Are we more prone to pick up the Coronavirus due to a weakened immune system.

  21. A telephone consultation with the doctor this morning. He doubled down on the practice’s refusal to allow B12 at this time, even suggesting that I would not be allowed B12 again until the coronavirus risk has gone (by which time I may have gone a further 18 months without my injection – I am immuno-deficient, I have had a stroke, and being denied my essential medicine like this puts me at high risk of further serious neurological damage). When I politely pleaded for my B12 he terminated the conversation.

  22. My quarterly B12 injection has been cancelled. I’m being prescribed tablets instead for 6 months, which seems pointless,as the reason I have injections is because I can’t absorb it through the stomach. I’m just hoping there will be enough in my system to keep me going for a while but it is adding to my general anxiety at the moment.

    • I am in the same position. Injection cancelled for last week and informed I am getting a prescription for oral tablets. Also informed surgery are moving everyone to oral tablets so this situation just moved everything forward. I was so upset on phone to GP I had to end the call.

  23. I’m being refused my 4 weekly injections of B12 as it is deemed “not urgent”. I take immunosuppressants for another condition, and both haematology and endocrinology are I agreement that I should have them every 4 weeks, yet it could be at least 12 before I get them again at the surgery. I know what kind of mess I’ll be in at the end of that period if I don’t get them, and I had a panic attack this morning just at the thought of it!

  24. My gp practice linburn road health centre dunfermline have stopped providing b12 injections during the pandemic. But I’m supposed to get my injection every 6 weeks and have been since 2012 I’m also deficient in iron. I cannot function without my b12 injections. So because I use to be a nurse I demanded I be allowed to self inject at home and this has been allowed for the next 12 weeks bevy I know what I’m doing.

  25. I turned up for my B12 today only to be told it’s been cancelled but I’ve not had anyone call me, so they have put me at risk as I didn’t need to go out. I was told that the nurse will call me to give me advise what to do next.

  26. My surgery on Lancaster has cancelled all b12 by letter and have stated they will prescribe tablets (they tried this with me before and my levels doubled but were still low before slowing declining again so they know they don’t work for me). They also state they will then reassess everyone’s need for injections after the virus has died down. I am awaiting a call back from the pharmacist but will be escalating this further.

  27. I have today been told that my GP is not taking any appointments for B12 Injections for at least the next 13 weeks (mine being due on the 2nd April). I have emailed the relevant CCGand copied in my MP. I feel very unsupported and upset that my treatment is now being denied, despite the fact it’s an essential medication. I have been identified as a key worker, and I am now going to have to fight my own personal battle to carry on working to keep business as usual!

    • Grace have you spoken to the Practice Manager? They can give you the ampoules by prescription and let you self treat, let them know that many surgeries are doing this and make sure they know that you are also a key worker. Best wishes Tracey

  28. Still being refused B12 in my practice, who refuses to empower their district nurses to administer them. I have recently had a stroke, can hardly move, have a compromised immune system, and have been told not to go out for three months. This present refusal is a time bomb, and the resultant further depletion of immune systems will hugely add to the virus toll. A ridiculous approach.

    • Jan this is a ridiculous approach, is it possible to ask the district nurse to fight this on your behalf?
      Have you spoken to the Practice Manager? If not you should, the GP needs reminding of your stroke, inability to move and of your isolation. Best wishes Tracey

  29. I was due mine today.

    Got there and it had been cancelled.

    All appointments with nurses and GPs cancelled.

    Guess I won’t be getting my asthma review either then.

    I was advised to call in a months time.

    I told her that WHO classified B12 as an essential medicine.

    I was told that Public Health England had told them to stop them.

    Which cannot be true if others are receiving them around the country.

    • Yes others are receiving their essential injections Michelle. They should have called you to tell you it was cancelled not let you turn up first. Call and speak to the Practice manager and ask for the ampoules on prescription so you can self treat. Best wishes Tracey

  30. Appointment cancelled for tomorrow’s 8 weekly B12 injection. Asked for a script to be sent to pharmacy so nurse at work can administer it but surgery declined my request – I will receive a letter with info shortly!! (Hiw short is shortly). I have neurological problems and am currently undergoing tests for conditions which may be caused by neurological problems. I have lost a career due to neuro issues. I suffer with malabsorption so telling me to take tablets is useless.

    • I get weekly b12 injections for neurological symptoms and my last two appointments have been cancelled.was told doctors said they are unnecessary and could suspended for 3 mths . I asked to self inject as nurse that I saw two weeks ago (who is self isolating ) said she might need to talk me through it over the phone if appointments get suspended to phone next week when she’s back. Tbh don’t think that will happen

      • Carolann, let the Practice Manager know about the nurses plan if you haven’t already, they should then prepare a prescription for you. This nurse sounds like she could help to fight your corner when she is back. Best wishes Tracey

      • Hi Tracey hope you are well. I have spoke to the nurse she is emailing the neurologist who said I was to get weekly injections as it is not licensed to self inject and then speak to the doctors to see if I can. my fingers are crossed. I as many others are struggling I told her I do not crave this as a lot of medical professionals think we all do but this is a necesssary medicine to function. She said it might be suspended for 3 mths I said this is so sad as we should get the option to self inject to help us keep healthy and free up the nhs resources especially at such a critical time. I have neurological symptoms that have got worse as this is my third week without injections I have a strong family history of b12/pa also stomach issues severe ibs gastritis. duodentitis slow motility low ferritin eczema psoriatic arthritis fibromyalgia and now dealing with no b12 injections has made my symptoms deteriorate I told the nurse I already inject humira and would be willingly to self inject b12. She is really helpful and will phone me on Wednesday to see if I can do this. Everyone stay safe. Thanks Tracey for all your help and advice this is greatly appreciate. X

  31. Have just been told that all B12 injections are being suspended at my surgery. I have mine monthly . I have been offered tablets which obviously are no use to me. I asked if I could be prescribed B12 , receptionist response you can call at 2.30 to speak to a Dr but she doesn’t think they’ll give me a Perscription. I know this virus is really serious but to stop us getting our regular injections is ridiculous.

    • Sarah I agree, your B12 is essential and thankfully the receptionist isn’t the doctor. Hopefully your doctor will see sense and make provision for you and everyone else in your Practice who needs B12. Best wishes Tracey

  32. All ‘non-essential’ treatments are cancelled at my GP surgery, including B12 injections and smear tests. The GP won’t allow me ampoules on prescription to self inject either. Fun.

  33. I was refused injections at the doctors, despite my levels being under 200. They said they’d need to be under 100… So I bought all the stuff and now self inject at home.
    When I told the GP, she nearly fell off her chair and looked at me like a was mad! Then offered me 12 weekly, which I said wasn’t enough, then 8 weekly, but I said I didn’t want to waste mine or their time when I could do it myself!
    They really need more education on vitamin deficiencies. I’m also vit D deficient and their treatment for that is equally as bad. No mention of the co factors you need.

  34. Thank you for highlighting this. I am in desperate need of a B12 injection. My practice have “no plans in place” and even when they do I will have to walk across the city centre to get it. But I have a raft of autoimmune conditions, had a debilitating stroke a few months ago, can hardly walk and frequently fall and black out (obviously I will never drive again) – the practice are aware of this. They also know that I have been told not to even open my front door right now, given the high-risk that my current state puts me in. With the problems of all my neurological and stroke appointments cancelled and the difficulty of securing my essential medicine, the failure to even fund a travelling B12 service out of the 400bn is just another level of uneccessary terror. It also looks like there will be a shortage of B12 given the almost certainly baseless rumour that it fights the virus. What IS certain is that a failure to give the pre-existing ill their essential injections will dangerously weaken their already weak immune systems and make their level of risk if exposed to the virus even greater. This is awful.

    Oh, and my practice have always refused to prescribe capsules so even the option of getting the injection from someone else doesn’t exist.

  35. Hi Tracey, I’m sorry all your hard work with your MP got deleted. I didn’t realise that happened with a general election. Good luck with your restart. Also thanks for your words regarding Covid-19. It is a worry. There is a nice idea on the 26th March at 8pm where everybody is being asked to stand on their doorstep or somewhere outside to applaud all the NHS workers (https://clapforourcarers.co.uk/) . Though I think it is a thoughtful idea, I think NHS staff would rather people leave stuff on shelves in the shops so when they get there after their shift, there are actually things left for them to buy! I think all our shop workers and delivery chain workers deserve some recognition too, especially those providing necessities. They are all there without any protection and many have children or elderly parents relying on them after they finish work.

    As to your main fight, I have to be given vit B and vit D every 3 months. They are due in about 3 weeks. I must admit I hadn’t thought about not being able to receive them. Fortunately, my need is not as life threatening as it is for some. My vit D is an intramuscular injection and vit B is a subcutaneous injection. I wouldn’t feel comfortable giving either of them myself from vials, as I worry about injecting air bubbles (damn that movie I saw ) but recently I had to give myself 28 anti-clotting injections over a fortnight. These were already loaded, foolproof syringes. If vit B could come like that then surely most people would be able to inject themselves. Vit D wouldn’t be as easy I don’t think, because as I understand it from my doctor, vit D cannot be in a plastic syringe for long and has to be administered as soon as the syringe is loaded from its glass vial. But hey, still one less for my nurse to administer.

    I was also pleased you confirmed what I thought about the “Chip In” element of petitions. I did chip in £5 once, thinking it was going to that petition starter to help them reach more people. However, after I read it again, I realised that was not necessarily the case. As so many people share the links, surely WE are doing the hard work anyway.

    Thanks again for all your hard work.

  36. B12 refused at surgery. Told to try again in a month! My mum is also due on 2nd April – and as she is 84 this is a necessary thing.

  37. Hi Tracey
    I have been struggling for over 2 years to get 3 monthly B12 injections, but to no avail I am passed from one Gp to another and each one treats me differently.
    I was found to have low b12 in late June 2014 and was treated with b12 injections then once my levels rose they stopped, no bloods to keep a check, just left until another routine test a few years later found my levels had dropped again this time I was put on tablets they didn’t help. My levels seem to Hover just above the 150ug/l or drop just below. I think it’s this that’s making me feel so unwell over the last few years but can’t seem to get this through to my Gp.
    I finally had a melt down about 6 months ago and quoted to my gp how the NHS website says I should be diagnosed and treated, I insisted being referred to a Haematologist, my gp gave me a b12 booster at the end of October and I saw the Haematologist at the beginning of November 2019.
    I have not had another B12 since and after 4 blood test over the past 4 months requested as I wanted a timeline of my levels
    have gone from 797ug/l to 245ug/l to 178ug/l the last one I had last week still to be confirmed.
    I have asked to bring my appointment forward with the Haematologist as my Gp refuses to give me any more injections until my Haematologist request her too!
    I’m now on the floor I cannot do anything that takes up to much energy and if I do it takes me a day or two to recover, I’m only just managing to hold down my job and that’s only part time I feel under immense pressure as I struggle to remember anything new and my job has changed recently so lots of new stuff to learn, courses to complete which I’m finding impossible whilst I live in this fog!
    my two children are sick of hearing me tell them how tired I am.
    It’s fair to say this whole situation is making me so depressed.
    I am also being treated for low ferritin with iron tabs.
    The Haematologist sent a letter to my Gp last week requesting an urgent b12 test and an intrinsic factor antibody test ( already had one done months ago and it was negative) also hinting that if I have genuine b12 deficiency I would need maintenance b12 injections?
    I don’t know what is causing my levels to drop, but I’ve asked whilst they investigate is it to much to ask for them to keep my on the 3 monthly injections so I’m able to manage?
    With the Coronavirus I’ve had my appointments for b12 blood tests at my Gp surgery cancelled and had to get this done else were and dropped off at the hospital ready for my appointment with the Haematologist next week.
    My surgery is in lock down so nothing has been done with the letter sent to them by my Haematologist, I’m just hoping that when I get to the hospital appointment something will be done.
    I’m at my wits end.

    • There is a Pernicious Anaemia Society forum on Health Unlocked (a social network for health) where this problem of injections being stopped is being discussed.

  38. I had to cancel my B12 (monthly) injection last week due to being at the tail-end of a virus, which may or may not have been the Coronavirus according to the telephone consultations I had with my GP. I was told the nurse would call me back to rebook, but haven’t heard from them and since then the surgery has closed its doors. I know they are very busy and short staffed at the moment so will call again next week to find out what the plans are for b12 injections.

  39. My last 2 b12 injections have been cancelled at short notice due to staff shortages and it has been a massive effort to persuade the practice that I can’t wait another 4 weeks for another appointment each time.
    The same surgery now longer has face to face consultations due to covid so I am pretty sure I won’t be getting my next b12 jab in April .
    I would love to be able to self inject with ampules from the pharmacy . Reports of potentially being denied the jab lead me to consider trying to source privately but that scares me .

  40. Thank you so much for writing this article I have made note of some of your ideas and am going to limit myself to 10 min of looking at news website a day starting now- as it is causing me stress. Also for fighting this battle! I was directed here by the petition. I’ve been having b12 injections Since early 30’s and can tell if I am due one without looking at calendar. I am 4 days away from next 12 weekly injection and waiting for the text that appointment cancelled but keeping everything crossed it won’t be. I would happily buy the amulets over the counter and do my own injections if someone showed me how. Ps I signed the petition. Many thanks! Rebecca

  41. Thanks for this advice, Tracey. My appointment for my next B12 injection has just been cancelled. I have asked if I could collect the prescription and self inject. Fingers crossed!

  42. Dear Tracey,
    You are a star and all round good egg. So true, I don’t seem to have enough time in the day now, mind I do go slower. I have just rejoined email “Positive News” I used to have it years ago. I used to buy a lot at a reduced rate and distribute them free.
    Of course I get a bit scared as and worried but the more you hear kind things the more it lifts your spirits. So bless you. I am one of the “vulnerable ones” Can somebody come up with a funny name for us?
    Can we hear of lots of acts of randon kindness

    Sending you a bucketful of love,
    Eve D.
    Emmas Aunt. xxxx

    • Dear Eve
      You are kind, thank you for your lovely comment and I agree we need to focus on the kind things, and there is a lot of kind going around in this pandemonium!
      I bet the Positive News’ has new subscribers every day!
      A bucket full of love heading back to you and Emma xxx

  43. I’m aware of people who have been told by their GP surgeries that they can’t have their B12 injection as it is considered non essential treatment and I mean people who are not symptomatic for Coronavirus.

    What should they do?

    • Hi Sarah, I have updated the blog and added some more links to help. It is not acceptable for GP’s to stop vital B12 injections. I understand that Vaccines are still being given so why not essential injectable treatment?

    • It appears any of us could be at risk Liz but that some of us may have it with mild symptoms. Trust your gut as regards self isolation and take advice from NHS sources. Are you feeling ok?
      Best wishes Tracey

  44. Thank you Tracey I’ve been ill for the past week with suspected Coronavirus. I self inject b12 fortnightly so luckily won’t need to go to the gp practice. In my case,t anxiety has been as awful as the virus. I am giving myself a regular talking to about not panicking. These are scary times. You’ve given good advice xxx

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