B12 STOPPED

[pembrokeshire]

I am in shock to suddenly discover that my B12 injections have been stopped AGAIN, this happened two years ago and with help from the Pernicious Society the injections were reinstated.At that time it had been a battle, unfortunately for me, the GP has retired and now the new GP is doing the same to me. This time l didn't know they were being stopped until l went for my repeat prescription. I cannot describe the upset l feel.

[Nackapan]

I'm so sorry to hear this. On what grounds have they been stopped ? Surely they are for life

[SnappySam]

Yes, eBay has all you need and is quite reliable for B12 supplies. Self-inject or get someone to do it for you if possible.

It is outrageous that they stopped your B12 just like that, but it's best to be practical and rely on your own resources. You can fight them but why bother? Use your energies elsewhere and look after yourself and get what you need online.

Exactly what you need may entail looking very carefully, but it is there. Make sure you get the right syringes/needles. Should be plenty information on here - or try YouTube.

[bdole2018 in reply to SnappySam]

Snappysam:- If an existing repeat script has been stopped: It would be foolish not to try and get it reinstated. Usually the gp is not aware of the guidelines for treatment following a positive diagnosis of Pernicious Anaemia. Ie b12 injections are for life and further testing of serum b12 levels is inadmissable and contra indicated.

One can debate the deficiency the frequency of b12 supplementation according to the Nice/bnf/bjh clinical guidelines all day. Everyone knows it is often insufficient. It still shouldn't preclude someone seeking treatment they are entitled to on the NHS. Also; a record of continuous b12 treatment officially will benefit anyone who has a future medical assessment for medical absence or sickness and disability benefits due: To effects of Pernicious Anaemia.

If you have to treat it yourself, it's unofficial and your claims would carry less weight.

[SnappySam in reply to bdole2018]

The OP could self-medicate and seek treatment simultaneously. Take what's available and supplement it. You can't take too much B12, apparently.

The uphill battle as described by the OP is likely to continue, as it will for many others. Some fights can be won by running away, so to speak, and that's more or less my advice.

It's been the same old story on this board for years - nothing changes and B12 shots are still routinely denied to those who desperately need them. I did once suggest taking some form of civil action as a last resort - a court claim against the practice for damages due to negligence, perhaps.

Not that such a thing would wind up with any sort of judgement in your favour - the idea would be to bother the practice manager to the extent that brings them to the conclusion that a 60 pence injection every week or month is better than defending a claim.

I'd be the first to do this - or follow any other procedure that would likely result in forcing provision of medical needs - but there was and is no point: my partner gets what she needs, when she need it, and that's the end of it.

We do have principals, and manage to assert our rights better than most, but we both agreed it would be best to avoid a fight with a health authority when there was a more practical alternative.

[bdole2018 in reply to SnappySam]

SnappySam:- Nothing I said was precluding simultaneous self injections with NHS treatment or self injections in the meantime.

Unfortunately those self injections will not usually help with having the necessary weight on ones medical record when it comes to claiming sickness related benefits now or in the future. Especially as the DWP are moving onto direct medical records access for assessments.

If you claim due to symptoms of Pernicious Anaemia but let your injections be stopped without raising objection: You will be treated as having nill PA symptoms. Potentially causing a months long wait for an avoidable appeal. So it is "worth it" in the long run. You don't know if the future will mean you require sickness benefits to support yourself so: You must err on the side of caution.

If people leave it too long when injections are stopped; they will likely never be reinstated. This also only reinforces incorrect attitudes and beliefs about PA treatment amongst many doctors.

If we do not challenge them right away every time: These sort of b12 cutoff incidents will continue in perpetuity. As such Pernicious Anaemia will remain a forgotten condition and medical professionals poorly trained in its diagnosis and treatment.

[SnappySam in reply to bdole2018]

My partner has challenged them plenty, and I've always said what you just said - attend the surgery regularly enough to make sure they know you still need the shots. They wanted 3-monthly - at 2 different surgeries - she finally got monthly - she needs weekly.

So making a fuss can work - but unless there is a clearly definable legal challenge with a realistic prospect of success to be had then it's unlikely, as far as I can tell, that anything can be forced. Without an element of threat I guess it comes down to persuasion, which isn't what I prefer to rely on - applying legislation works best for me.

Just asking: has the amount of 'challenging' that has resulted from advice on this forum, for example, had much impact on the rate of B12 refusals? How far do folks have to go? Stressful is it? Time-consuming perhaps? Do you think the individual complaints over the last 5 years have resulted in doctors giving less B12 sanctions?

I'm genuinely interested to know if you think that these 'incorrect attitudes' have changed in the last 5 years due to doctors being challenged.

[bdole2018 in reply to SnappySam]

Certainly the prevalence of the PA society online and the support by forum members has made a difference.

This forum pretty much has a stock list of links to clinical guidelines for such situations now. People are also made aware of the assistance the PA society can offer via intervening on their behalf.

Indeed; the bnf guidelines have been changed as a result of patients and the pa society lobbying.

I quite understand how difficult it can be for pa patients when they get cut off. Continuity of injections via self obtained and administered b12 is obviously a priority.

We have to remember for every so many cases we hear on a site like this or the PA society intervenes there will be one patient that this happens to in isolation. Especially the elderly whom likely do not have internet access and don't know patient groups exist. You know the type, the cap doffers who take everything the gp says as gospel.

My own great grandmother died mostly in part down to her doctor cutting off her b12 because she apparently "no longer had pa." We knew no better in the pre internet era. It has to stop and if that means a bit of stress to push doctors into following the guidelines so be it.

[Gambit62 Administrator]

pembrokeshire - sorry to hear this has happened to you again

Have you actually spoken to the GP?

I think you need to follow the same steps as you did last time - know its difficult and tiring but ...

have you got any materials from last time this happened that you could draw to the attention of your new GP. and would suggest you try contacting the PAS directly again to see if they can speak to the new GP.

[Sleepybunny]

Hi,

I think your best bet is to contact the PAS again as soon as possible.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Is there a PAS support group close to you? They can be a source of useful info eg helpful GPs.

Blog posts about how PAS supports those whose jabs are stopped.

martynhooper.com/2018/12/23...

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on B12 treatment has changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Complaints about GPs

citizensadvice.org.uk/healt...

PALS

nhs.uk/common-health-questi...

Personally, I don't think PALS are particularly effective,

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Blog post about help for those whose B12 injections have been stopped.

b12deficiency.info/blog/201...

Have you contacted your local MP?

They should be interested in hearing from someone who has repeatedly had necessary treatment withdrawn.

parliament.uk/mps-lords-and...

UK treatment for PA is injections for life.

PAS have articles "An Update for Medical Professionals: Diagnosis and Treatment " and "Treatment is for life" access to PAS members only.

pernicious-anaemia-society.... See Page 1 of articles.

Consequences

Stopping your injections could place you at risk of developing permanent neurological damage including spinal problems. Might be worth putting this info into a letter to GP/ practice manager etc

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 of articles

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Have you considered changing to a new GP practice?

Although this is no guarantee of better treatment....

nhs.uk/common-health-questi...

Proof of Diagnosis

Have you got proof of PA diagnosis eg blood test results, copy of medical files, letter from consultant? Might be worth trying to get proof.

Some forum members have found that PA diagnosis was not recorded in their notes when they challenged GPs over stopped injections or changes in level of treatment.

I am not medically trained.

[Catsgalour]

Please don't let this GP or others who have no understanding of how we feel or what we can suffer dictate your life! At 64 I started to SI and 3 years later I am feeling as good normal as I can expect to feel. It is a waste of your precious time time arguing with some Doctors and it will upset you! Take control of it yourself and you will find it is so Liberating! It did take me approx 2 years to fully recover but then I probably had PA for over 30 years and had been fobbed off with Women Ailments. Depression and Anxiety Etc! Makes me so Cross but You can stop feeling upset and get on with recovery ! Good Luck To You xx

[SnappySam in reply to Catsgalour]

Yes, it is liberating, Catsgalour. Rather than be subject to whim and fancy (it happens) you have taken responsibility for yourself because you know that nobody else will. Arguing with a medical professional is on par with complaining to the chef - neither is likely to end well.