I was upset after a talk with the nurse who asked me what I wanted if something happened? I am 58yrs old. If I had a terminal illness and in pain I can understand it. I use a wheelchair but look after my self. She said it is a good thing and positive. I put the phone down as I disagreed with her, is this another money saving episode? Also should you have blood tested once a year if injections stopped for PA and changed to oral. Yes I live in Gloucestershire
many thanks
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Sunny999
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Sunny999I can understand how upset you are, I cannot believe how medical professionals seem to speak to people as if we are just a burden on there resources.
I also live in Gloucestershire, and what I have witnessed in the last year has been very traumatic, from lack of compassion, anything to do with care or responsibility for ones health. As for B12, it's a bl..dy disgrace, my partner had low b12 but because he could remember boris Johnson's name refused injections ... now paying the price with servere back problems. I now inject him!!
Would you be able to inject your self ?
As for the DNR, I would complain, and make it clear to them, they DO NOT have your consent what so ever.
If that is all your nurse and surgery are interested in, they are in the wrong profession.
My Dad was admitted to hospital with a minor tummy problem. OK, he was in his 80s, but was a very spritely 80. The Doc took me aside and asked me as his next of kin if I wanted him resuscitated if anything went wrong. I was disgusted. I very loudly asked Dad if he wanted me to sign a DNR for him. Being of totally sound mind, Dad shouted back, no, I'm not ready to pop my clogs yet! Yes I understand that there are circumstances where it needs to be asked, but to ask in those circumstances just completely shocked me!
That is condescending and very unprofessional. My blood would also have been boiling! These so-called professional think they can say & do whatever they want and we'll just take it because we're poorly patients?? We DO have agency. I would also complain in writing as Sallyann suggested.
I'm sorry you had to go through that.
Have you been off injections for a while? How do you feel?
You're welcome! Just a reminder that even the guidelines say blood tests are not needed once on inection, best is to go by symptoms since one can be symptomatic even with normal or high blood levels.
Your injections should NOT be stopped if you have PA . They are FOR LIFE ! You should maybe consider self-injecting if you cannot get your injections reinstated . I self-inject , and am glad to do so . Yes I’m in GLOUCESTERSHIRE too ‘ Why is it the worst county to have PA in?
You'd want a witness either way : yes / no.Someone of your choice. When the time comes.
If this is not going to be under our own terms, even if nothing else is left under our control (where we live etc) - this is the final say-so and belongs to us.
Gloucestershire seem to have their own rules - would be worth knowing how many people here who have unresolved B12 issues live within it's boundaries. Quite a few I would imagine.
Sunny999 : yes. wedgewood is right.
For anyone with a pernicious anaemia (PA) diagnosis : there is no cure. There is only control of symptoms. For that, B12 injections are required. For life.
It has nothing to do with your serum B12 test result any more - not since your first injection.
It has to do with your symptoms - and if they are neurological in nature, there is a possibility that these will become permanent if undertreated/ not treated at all.
This remains true wherever you live.
It is well-documented. Have a look at the NICE (National Institute for health and Care Excellence) guidelines, BCSH (haematology) guidelines, BNF (British National Formulary) guidelines. These are the guidelines for medical professionals.
I do not think they have a protocol for testing and retesting where pills have replaced B12 injections - because the injections should never have been stopped in the first place.
Link to blog post about treatment algorithm in Gloucestershire in case anyone's wondering why Gloucestershire has a poor reputation on this forum as to how B12 deficiency is managed.
Gosh, there sure seems to be a lot of people with B12 deficiency from Gloucestershire. That seems suspicious in itself. It's largely populated, but still.
So sorry, they asked you that. It definitely is a jolt to be asked. Last year, I had stage 0 breast cancer and I had to fill out DNR and power of attorney etc, before I went into surgery. I was 59, scared me!! They ALWAYS ask me if I have directives in place even for my upcoming endoscopy they asked me yesterday. It makes me feel old and nervous. It's like a slap in the face of reality for sure.
Thank you. I am cancer free!! But the Anastrozole hormone blocker really did a number on my immune system. That's when they found the PA, that had been an underlying issue that no one could find for 37 years. I guess I should be grateful something finally tipped the scales and made my doctors turn their heads.
It is disgraceful. I am appalled. It goes along the lines of people dying from covid "with underlying health issues" - as if it's OK then and we are dispensable, or worse "better got rid of anyway"!
If it helps to put it into a different context, most of the nurses I have seen over the last few years have been staggeringly out of touch with reality and ignorant of the medical procedures they are supposed to have been trained in, while thinking they are an authority on them! From appallingly bad technique for doing smear tests to anything B12 related and much more besides. Although this feels personal to you, it probably isn't and is just basic incompetence.
Re injections - if they won't do them and you have PA, you definitely need to do them yourself based on symptoms, rather than getting blood tested - there's a chance your levels will be artificially high even though you haven't had an injection for ages.
The fact that nurse training starts in university and has degree status, instead of starting in hospital caring for sick people, could have something to do with it???
One of my cousins and a very good friend of mine are nurses and they are absolutely excellent, as are many I have had the opportunity to meet while caring for myself and others, so it is possible to have stunningly great nurses, as well as some that just don't seem to be in the right place.
That’s got nothing to do with it. The old training started in College and went on to alternate between college and the wards. The new training has a similar amount of practical training on the wards.They are better protected and supported nowadays in my opinion. In my day, we were used and abused, getting all the jobs to do that no one else wanted to do.
Hey Sunny999I’m on the waiting list for neurosurgery which I’ve been avoiding for years.
One of the first things I did after finally agreeing was to see my GP to have a DNR on my record.
It will only “kick in” if something totally catastrophic occurs during the operation.
We all think differently about things but I don’t want my last moments of earth to be violent as some doctor works on trying to restart my heart breaking ribs etc etc.
The big difference between us is that was totally my decision, nobody asked me to put one in place.
I was however asked as my Mum’s next of kin to put one in place for her. That upset me a lot. I felt I could not be responsible for making a unilateral decision on behalf of my Mum. Her GP popped into see her one day when she was much more with it than others. She was able to sign it herself which was such a relief for me. My wee Mum passed away last year due to Covid. She did not have the virus, she gave up as we could no longer visit and was unable due to dementia to understand why.
I cannot understand what is going on in your particular county. It seems that docs there are making their own rules as they go along x
I don’t I’m sorry to say. All electives are cancelled at present and neurosurgery told me they are struggling to find beds for emergency admissions. Covid remains rife in Scotland and the hospitals are full☹️
Dear Sunny999 - if you are not treated with b12 pernicious anaemia IS a fatal condition after a long slow unpleasant decline. The dr has no right to remove your b12 injections -PA does not cure itself. It's appalling how ignorant and unkindly you have been treated. Sadly I do believe it's a money saving exercise. Write a letter to the dr. quoting NICE guidelines and tell him/her that you are young and not disposable. Good luck.
Many thanks for your reply. I will talk to my doctor next week. Injections stopped over a year ago and hadn’t really noticed any problems but last couple of months I have noticed numbness and pain in my fingers but not all the time and a little tremor but only a little at times.
Sunny999 , if you have problems with your g.p. you can get help. The pernicious anemia society or Tracey Witty, self injecting please come back if you have further problems many people here will try and advise you, you are not alone in having to deal with the NHS on there ILL informed treatment.
Dear Sunny999 - the numbness and sensitivity in your fingers and tremor are very important so don't diminish these signs. Similar signs in my toes (soon followed by cognitive difficulties and balance issues) were signs of neurological damage. This can be reversed if treated - but can become permanent if left too long. See the nice guidelines for b12 deficiency with neurological signs. You may need loading doses and more frequent jabs to get rid of the nerve damage.Don't be fobbed off - it's very important. Good luck
I agree with Brainfoglady , don’t let this go, put your concerns in writing and ask for reasons for this decision. Have you had absorption tests carried out which supports the switch to B12 tablets?
If you have time, have a look at my recent forum thread about Patient Safety.
Was it the practice nurse you spoke to or a hospital nurse?
You could submit a FOI request to GP surgery, hospital or CCG/Health Board asking for a copy of the local policy on discussing DNR with patients.
I would be wondering if all patients were asked about DNR.
I glanced over some of your older threads on the forum.
Have you had any B12 injections in the last couple of years?
My understanding is that you were diagnosed with PA and GPs changed your injections to oral tablets during the pandemic and you have the misfortune to live in Gloucestershire.
Have your symptoms returned, got worse or have new symptoms appeared since your injections were stopped?
Please think about joining PAS and talking to them.
They can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
GPs do not have to follow guidelines....they are allowed to use their professional judgement.
Have you asked your GP directly face to face if they think that oral tablets are as effective as IM (intra muscular) injections?
If they say yes then ask them for the evidence.
Have you looked into self injection if oral tablets are not working for you?
If symptoms have returned, got worse, new symptoms appeared then maybe tablets are not effective. They may raise serum B12 levels but doctors should be looking at whether symptoms are kept at bay.
There are forum threads about self injection.
wedgewood has posted helpful replies on the forum about getting supplies.
This is a very emotive subject and many recoil with horror when it is raised. It is however a discussion that everyone should have with their family and friends. A DNA CPR doesn’t mean that you will be abandoned and not treated, it means that if your heart stops beating no attempt will be made to restart it - it’s not like Casualty! Long term outcomes need to be considered too.
My dad is 97 and made his own decision several years ago - if his heart stops he doesn’t want anyone to attempt to restart it.
My husband has had several heart attacks, major heart surgery and two strokes, all of which have taken their toll. He is 73 and learning to walk again following his recent stroke. I was asked by the doctor in the hospital about a DNA CPR for him. I agreed for several reasons; he and his body has gone through enough already, CPR is brutal and frequently breaks ribs and the outcome is rarely good for someone in his situation. If his heart stops leave it stopped.
Have the conversation on a relaxed afternoon when logical, informed and realistic decisions can be made rather than emotional, knee-jerk reactions.
I agree there are times when you have to consider what is the best for yourself and loved ones. The subject of DNR should be managed at the right time and not over the telephone by a nurse. There is a time and place for everything and this discussion should be approached in the appropriate setting, and with family.
I agree. If families would openly discuss these matters and make their own views known then perhaps it would avoid these horrible and awkward situations.There should not really be a need for medical staff to have to broach the subject.
The same applies to Power of Attorney - it makes life simpler for everyone … and none of us knows when we are going to find ourselves in that position. My husband spent 15 weeks in a stroke rehab unit - also in there were a young man aged just 17 and a young woman of 42, the last situation they both expected to find themselves!
DNR's aren't worth the paper they're written on. My dad had a DNR and doctors totally ignored it. He didn't survive. I don't know why I was surprised. The modern NHS seems full of incompetent people. I think things started to go wrong when they got rid of 'old school' matrons.
Unfortunately there is no ‘joined-up’ thinking in our medical services - although the paperwork is lodged with a GP the hospital cannot necessarily access those records.
My dad has just been admitted to hospital and we have handed the hospital staff photocopies of all of the relevant papers as he has also gifted his body to medical science.
Ambulance crews will automatically start CPR unless someone is there to tell them otherwise, likewise nursing staff in hospital unless it has been made clear beforehand.
Make sure you mention every neuro symptom you have and definitely any symptoms affecting your spinal area.
You mentioned numbness and tremor, these would usually be considered neurological symptoms.
I had the following neuro symptoms
tingling
pins and needles
burning sensations
electric shock sensations
water trickling sensation down spine
restless legs syndrome (RLS)
periodic limb movements (jerks)- usually legs but can affect arms, fingers, toes, head and other parts
flickering eyelids
cold spots
muscle twitches
muscle fasiculations (a rippling muscle movement under the skin)
migraine with a lot of visual symptoms
difficult getting right word out (nominal aphasia)
mental blanks ( going blank in the middle of a sentence)
problems with proprioception (awareness of body in space)
If you have balance issues when it's dark, eyes are closed or your view of surroundings is blocked ...this is suggestive of possible issues with proprioception.
clumsiness
bumping into things
dropping things
memory problems
loss of ability to do mental arithmetic
struggling to follow complex stories - books, TV, films etc
problems with urination
loss of fine skills with fingers eg couldn't open thin plastic bags
There were other neuro symptoms and I just wanted to give you some idea of what is considered neurological.
I didn't have this next neuro symptom but think it's important to mention to GP if you do.
An unusual way of walking ( strange gait)
Inadequate treatment of B12 deficiency (from PA or other causes) can lead to permanent neurological damage including damage to the spinal cord, SACD.
I am not saying you have SACD, sub acute combined degeneration of the spinal cord, I am not medically trained.
I am saying that your GPs and specialists should be aware that the risk of SACD is increased if treatment for B12 deficiency is inadequate.
If they won't restart your injections then consider writing a letter to GP/practice manager that mentions SACD....it may make them take more notice of you.
See Point 1 in letter writing link below. It's about being under treated for B12 deficiency with neuro symptoms present.
If GP says they can't give you injections as the guidelines say oral tablets then you could
1) ask GP if they feel you would benefit from B12 injections.
If they agree that injections would be beneficial, you could ask them to use their professional judgement to prescribe B12 injections.
2) ask GP to write to a local haematologist asking for advice on how to treat you and make sure GP mentions all your neurological/spinal symptoms
3) ask to be referred to a local neurologist
Suggest you put referral request into a short letter along with reasons why you need referral and other evidence eg symptoms lists, extracts from UK documents eg quotes from NICE CKS B12 deficiency and Folate deficiency
Consider making a formal complaint about your treatment.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
Next thread is about someone who was on B12 tablets and couldn't get B12 injections.
It is a common and needed practice to ask patients about their Living Will, POA, and DNR wishes. If fairness, you cannot pick and choose who to ask, but it has to be equally asked of all patients. The topic of DNR may upset some sensitive people, but it has to be asked, Regulations you know. DNR instructions may and should be very different for a 20 yo with a broken arm versus a 90 yo with terminal cancer, but you won't know unless you ask. No offense was intended, nor should it be taken.
Oh no ! So sorry this has happened to you. What an awful thing that nurse said to you ! Absolutely appalling. The tablets don't work for PA. They may for low B12 but not for PA. Bless you 🙏
Hi I'm so sorry you have had to go through such a horrible experience.
I'm new on here but when I read it this it made me think of my past experience with the NHS. My Dad went hospital with a really bad leg ( that's how he explained it ) when he got to the hospital he was diagnosed with septic shock. The doctors told him he had roughly 2 hours to live and that he should phone his next of kin anyway it was the doctor that phoned and he said ( I'll never forget the words ) hi your Dad come to the hospital very very poorly and I'm sorry to say but you need to come up as he's not got long to live he also said his heart was slowing down and if it stops and will not resuscitate him. When I asked why they would not resuscitate him the said he's so poorly it's not in his best interests ( nobody asked me about this and I'm next of kin ) they said he's so poorly he couldn't even go on a ventilator.i sat with my Dad for hours he was on a drip and antibiotics the drip had been empty for over 2 hours ( I told them repeatedly it had run out ) they then tell me he's not passing urine so it's looking bad for him. Eventually they changed the drip. I was told my Dad would die in resus as he was to poorly to move the next I know that because he was passing urine they could move him to a ward ( if I hadn't have kept on about the drip who knows what would have happened ) luckily for me he survived this very trumatic experience but neither of us are anywhere near passed it mentally.
So sorry for the long message I hope you are feeling a bit better. I'm not sure if it will work but keep on at them you deserve to be looked after
I had so many amazing replies and do appreciate it very much, but not sure if I replied to everyone. I was very sorry to read about your Dad, he must be made of strong stuff. Good job that you were they looking out for your Dad.
Sunny999 thank you for your reply to @Cher82 she is my daughter. I just wrote you a huge reply went to press enter and pressed delete. so off i start again , well a bit of it. Im glad you have had your eyes opened and know what to ask for if this god forbid happens again. i wasnt lucky enough to get tht choice i was ill and they were going to let me die, and it the incompetant nurses would not of let my drip dry out and my daughters persistence to get another one on i would of died. id resigned myself to dying , i was at peace. some may say ive been given a 2nd chance, all i can still feel is i should not be here, that was my time to go and it has really mentally affected me and i cant shake off the feeling everyday that my time now should be in heaven with my parents and brother. Im suffering badly with anxiety and feel like im losing my mind, yet still had no help . I wish you well for your future and your future health, and i kindly thank you again for your lovely message to my daughter @Cher82
"this very traumatic experience but neither of us are anywhere near passed it mentally"
You have experienced something that has opened your eyes to the reality of how fragile life is and how the thought of if you hadn't been there ... what the outcome would of been.
It makes one doubt the trust we now have with the medical profession. How does one mentally deal with it ?
Hidden thank you so much fr your reply to Cherlou82 she is my daughter. It is frightening to think if she was not there being persistant that they would of been incompedent and i would of deff passed away. and what excuse would of been given seing as id already had a dnr on me ? NONE. it would of gone un noticed and it could happen to others. If i wasnt suffering so mentally id see about putting a complaint in but how i feel i cant take no more anxiety. thank you so much Sallyanni and i wish you all the best for your future and best for future health xxxx
God bless you and your daughter, complaints are worthless in many cases. Just excuses and an exercise that just rolls of the medical machine, that dont mean anything at all. Enjoy your life and carry on what you have been doing "LOOKING AFTER EACH OTHER". You have been blessed with a loving daughter. You can't alter what has happened just learn from it.
Thank you very much Hidden for your great advice. Very much appreciated. I think you are right in every way. It would be a waste of time , i bless god that my daughter who lives with her partner gives so much of her life to make sure i am looked after. Ive got PA and numerous underlying issues which are life-threatening , the latest being Myasthenia Gravis. Its rngs yoeally knocked me about a lot. I owe my life to Cherlou82 who is a credit to herself and everyone she knows. I once again thank you Sallyannl for your lovely kind words and i hope your future brings you lots of good health and happiness best regards Jon
Have I got this right....This nurse has said to you, that you need a DNR in place, because you have PA? That you are 58 years old. What the hell? I would have to make an official complaint to the Practice Manager. She should not be asking you things like that, if you are not terminally ill. I am speechless! I am two years older than you and also use a wheelchair, as the pain can be so severe in my back, but never been asked that question. You are getting your B12 jabs aren't you? I would also consider changing practices as well. I am so shocked and sorry you have been asked this question.
Hi jollydollyI probably didn’t explain very well, I don’t know why she asked about what I want if something should happen and she said this is a good thing but I said it’s not a good thing and I put the phone down. Don’t think it was anything to do with pa, also have CKD.but am well. B12 jabs were stopped a year or 2 ago as they said even with PA we can get b12 orally. When I was First diagnosed so long ago I don’t remember having symptoms. Take care and thank you for replying
Yes but the reason we have the jabs with PA is because we do not absorb B12. So they are wrong on that point. I also have kidney disease (stage 2). Still don't think that question should be asked. There never seems to be any empathy these days.
I live in the states & have not signed DNR paperwork. In the states it is billed as assisting with comfort care, but in practice it can increase the patient to nurse ratio. If specialty unit beds are tight in the states DNR patients will be sent to general floors first. Instead of having a one patient to nurse ratio, the number of patient's the nurse has on general floors will depend on how many staff reported to work, are the staff unionized, and how strong the union is it seems. One nurse overseeing one patient can make them a lot more comfortable in my humble opinion! Going to a general floor may hasten one's life if that is one's goal. In the states the question is length of life verses comfort in too many circumstances in my view. I could well be wrong but if you have cheap insurance here, I can't see them going all out anyway unless persuasive family are demanding it. This can occur if say the family are living on the patient's pension.
Often healthcare workers will preface DNR discussions by first saying that this is a subject that they are required to ask all patients. I fault the nurse here for not taking it up with any alert and oriented patient directly after letting them know this is a routine screening question (in the U.S.).
We have been told that the infamous "Liverpool Pathway" has been scrapped. It hasn't been scrapped, it's been renamed and still continues. I had two aunts who went into hospital during the high days of covid, they didn't have covid but of course visiting was virtually non-existent. They soon died even though we never actually had a diagnosis of what was wrong with them. The fact is that there was very little wrong with either of them (in one case I think it was a water infection) but they had committed the crime of living to a very good age.
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