latest rant !!: Well my latest visit to... - Pernicious Anaemi...

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latest rant !!

Jason_h123 profile image
21 Replies

Well my latest visit to the GP was interesting !!!

Diagnosed with PA 2 years ago, recent diagnosis of hyperthyroidism, plus u related cardiomyopathy.

Over the pandemic we were SI, my wife is a nurse of 30 years experience and GP prescribed everything for SI.

had a call 6 months ago , surgery were strongly advising against SI, in the interests of maintaining relationships we agreed to a 12 weekly jab at the surgery. First time around this worked ok and follow up jab rescheduled.

Arrived yesterday, HCA said ‘Oh you’ve come for your B12 test’ !!!!

Cue exasperated smile/ laugh from me, and I explained that yet again the HCAs or nurses weren’t looking at the overall picture nor believing that the patients knew anything about their treatment plans.

I explained that we had been SI at home, her response was that my wife should be struck off !!!

To cut a long story short, I received the jab, and the blood sample was taken in a very tense office, no warning just angrily jabbed in the arm.

Looked at my notes today, ‘patient was very rude, Accused me of not listening or understanding treatment plan as I’m only a HCA’

Subsequent test results indicated that she had also requested a B12 test, which surprise surprise was well above range. Not sure what I’m angrier about, the fact that she took absolutely no notice of anything I said and did the B12 test anyway, or that they now have an excessive B12 reading so will no doubt be trying to stop the regular jabs.

email sent to practice manager and clinical director, however not sure if this will get to them as I had to use the generic mailbox and just add FAO Dave as they didn’t know the surname of their practice manager !!!

Is it really too much to ask to expect a clinician to follow an individual treatment plan ?

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21 Replies
Nackapan profile image
Nackapan

Oh it saddens ne to hear this.Try and get prescription to self inject again .

I'm very weary of not bring listened to

I've had similar written in my notes.

How dare they.

I now am like a stuck record

Don't even start a dialogue.

Just repeat I'm there for my b12 injection.

Ask what brand they are using .

Shame it has come to this.

.

Jason_h123 profile image
Jason_h123 in reply to Nackapan

It’s very sad it’s like this. I feel more sorry for the people that don’t have resources like this one or the confidence to speak out against things like this.Too many people are intimidated by these HCAs who assume their own importance.

Nackapan profile image
Nackapan in reply to Jason_h123

Actually every HCA has been fine with me.Its the nurses I've had most trouble with .

Lurcher-lady profile image
Lurcher-lady

Sounds just like my surgery Jason. Absolutely shocking treatment!

It sounds to me that doctors and nurses are having too much training is how to fob people off.

How can you be rude when you are making an observation.

I also went into get B12 two months ago. New Nurse, she emailed someone, say I am putting a stop to this.

You have to have a blood test first.

I just said ... are you going to give me B12 or not.

Got jab .... Blood test I informed her were a waste of money as I was on Injections. She just said "You will be hearing from me " .... I look forward to it lol

Heard no more.

Won't be long before we need the body armour, ear plugs to protect ourselves. Lol

Jason_h123 profile image
Jason_h123 in reply to

Thanks, that reply has definitely cheered me up 😂😂

I have a wide range of friends and family across all aspects of healthcare and I know that 90% of them are fantastic, caring individuals.

However, like life there are always those few idiots that know best.

Having been married 32 years to a nurse and having helped her through everything from initial registration exams to her Masters I’d hazard a guess I am more informed than most HCAs out there 😂😂

Additionally having this condition would suggest that we know more than someone who doesn’t have the condition.

in reply to Jason_h123

Your are right, it's all about the right G.P. and nurse.The nurse I see now is lovely, automatically rebook my appointment for one months time. If ONLY !!!

Tanglewooddream profile image
Tanglewooddream

Ask for a call back to speak to the practice manager. HCAs are just that - health care assistants - not nurses - and at many GP practices are being given too many responsibilities which used to be under a nurse’s or even doctor’s remit. At mine they are advising patients on new medications which used to be done by a doctor. It’s bad enough when doctors and nurses ignore or do not understand the facts about B12 deficiency, we cannot let care assistants start dictating to us.

Jason_h123 profile image
Jason_h123 in reply to Tanglewooddream

I have asked for a callback, nothing for 2 days nor an acknowledgment of my mail so will escalate tomorrow.

The nurse at the practice is lovely and understands the condition and my requirements and also follows my treatment plan.

Have also arranged a GP appointment to discuss treatment plan and ensure that this is there in black and white.

Nackapan profile image
Nackapan in reply to Jason_h123

Ive had no replies to any letters.A nurse refused an injection as wasn't 3 months

I'm prescribed 2 weekly.

She knew best

Had to get a go involved as sge eoyjd follow or believe my regime.

Wrote in as she put bug errors on my notes to confuse matters eve more.

Trued speaking yo her first to amend her notes which were inaccurate.

Shd altered them with more errors.

Had to write in.

Letter scanned on my notrd.

Thus has happened more thsn once by a nurse.

The HCAs read the notes gave me my b12 injection.

They were trained up to do.

Painless. Also trained to take blood.

Get paid a pittance .

If people stay in their role / competence the cogs work.

Team work and good morale.

Ive always had to follow up letters with a phone call.

Or better still sorted things face to face.

I think the faceless system presently in action causing Chaos with little compassion and no job satisfaction.

Glad to hear you have sn understanding nurse at your practice and some continuity .

Many do not get thus any more .

I've had thst in the past.

They left as new management emerged.

Like you say we have good GPS nurses HCAs receptionists

All important in their roles.

Also have awful at all grades.

Attitudes ,record keeping, social skills ,patience caring lacking badly at times.

Hope you get it sorted 👍

RoseFlowerDew profile image
RoseFlowerDew

Just a quick reaction from me…..isn’t a form of abuse to have a test to which you did not consent?

Jason_h123 profile image
Jason_h123 in reply to RoseFlowerDew

Yes I did think that however I was having other tests and had consented to give blood for them so not really worth following up from that angle however kind of proved my point that she hadn’t listened at all and didn’t know what she was doing.

Sleepybunny profile image
Sleepybunny

Hi,

I've only just seen this thread so apologies for not replying sooner.

I had to resort to SI when NHS refused to treat me, wished I'd done it sooner when I finally started to improve.

I had dementia symptoms and spinal symptoms and over 50 other typical B12 deficiency symptoms before I started to SI and count myself lucky to have avoided SACD, sub acute combined degeneration of the spinal cord.

You might want to give your GPs a copy of this article about a survey of patients who self inject B12 in UK.

Patient Safety, Self-injection and B12 Deficiency: a UK Cross-sectional Survey

bjgp.org/content/early/2022...

If you suspect PA or have a PA diagnosis, worth joining and talking to PAS.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates covering a variety of situations linked to B12 deficiency.

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Local MP or devolved representative may be worth talking to if struggling to get adequate NHS treatment.

Local B12 deficiency guidelines

One suggestion I make to UK forum members is to track down the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board and compare the info with NICE CKS, BNF and BSH links below.

One way is to find them is to submit a FOI (Freedom Of Information) request asking for a copy of or a link to local B12 deficiency guidelines.

CCGs were replaced by ICBs in England on July 1st 2022.

ICBs are likely to take on the clinical guidelines of the CCGs they replaced.

Also possible to submit FOI to GP surgery but might irritate them.

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Links to forum threads where I left very 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.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

May add a bit more to this reply if I have time later.

Jason_h123 profile image
Jason_h123 in reply to Sleepybunny

thanks for your reply, have already tested positive for IFAB and have a diagnosis of PA plus recently identified hyperthyroidism so pretty classic symptoms and you would think that this would make the treatment plan easy to identify………

The most annoying thing, apart from the disgusting attitude of the HCA and the suggestion that my wife should be struck off, is that we were happily SI and only reverted back to Surgery injections to keep the peace. 😂

Sleepybunny profile image
Sleepybunny

I'm sorry that you experienced a bad attitude from HCA.

I can empathise as I was shouted at by a GP and snapped at by a neurologist when in a vulnerable state.

I remember getting an injection from a nurse I had complained informally about in past and it felt like she really rammed it in but there was no way I could prove it was deliberate.

"Oh you’ve come for your B12 test"

Maybe your GPs would like copies of these articles?

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment

(from Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(from B12 Institute - Netherlands)

b12-institute.nl/en/diagnos...

Jason_h123 profile image
Jason_h123

if I had a named GP that would be perfect but we have to go through the same every visit unfortunately as there is no consistency at this surgery.

My son is at the same surgery and he mentioned that he’d gone for a routine blood test and encountered a horrible HCA, no guesses which one it was 😁

Thanks for the links, I have a face to face with a GP next week so will take these as well.

Jason_h123 profile image
Jason_h123

quick update, no reply from surgery ref my complaint, 28 days on. Have chased with NHS England who have now contacted the practice and told them to reply, that was 3 days ago and they have 14 days before NHS England get really serious .

Managed to see a very helpful GP, who understood my frustrations and suggested 8 weekly injections rather than 3 monthly once she’d sent a letter to haematology, I managed to convince her to put this in place immediately as I get symptoms from week 9 usually.

Thyroxine dose to be rechecked as well as tsh was still over and has never been normal, however was ticked as being ok last blood test, again an example of just looking at everything in isolation.

She will also argue my case for SI however this is not my priority if they come up with, and follow a proper treatment plan!!!

So some progress I feel!!!

Yahaci profile image
Yahaci in reply to Jason_h123

You may find this eye opening: healthcareers.nhs.uk/explor...

It's the job description for an HCA and the entry requirements, 2 GCSE's. Basically a glorified dogsbody. Meaningless titles the government likes to give people to foster a sense of undeserved self importance. I don't look down on the title. I do get angry when people overstep their field of knowledge and exercise petty power.

Contrast this to a doctor who needed the highest A'level grades, before a 7 years university degree and further clinical training.

Why do you feel the need to 'keep the peace' when you've done nothing wrong. Glad you complained as more people need to stop cowtowing to these ignorant people, and they may reconsider their attitude. Also make sure to get the ''rude'' part removed from your records. Alternatively, question the comment and ask for detailed rationale for why it was made. i.e. what did you say, how did you say it etc? Put the onus on her to substantiate it. Note, it is possibly defammatory if nothing you said would be considered rude by a reasonable person. In the past this happened a lot but now we do have the right to ensure our information is accurate and objective. Her opinion is irrelevant.

Jason_h123 profile image
Jason_h123 in reply to Yahaci

I didn’t even say anything rude, it was my attitude that was interpreted as such because I dared laugh when she told me I’d come in for a B12 test.

I definitely won’t back down on this one, I have a family full of medical professionals and everyone shares the same opinion of the self acclaimed importance of the likes of HCAs and surgery receptionists !!

Yahaci profile image
Yahaci in reply to Jason_h123

So you thought you were going for the injection and she said test?

Be careful not to become like the HCA, ''I have a family full of medical professionals''. Are you one? If not then it's irrelevant. Just stick to the facts.

Sleepybunny profile image
Sleepybunny

Mistakes in medical records

Amending medical records

Next link includes the statement "the patient or service user has the right to have an entry put into the record to say they do not agree with particular content and why."

transform.england.nhs.uk/in...

ICO (Information Commissioner's Office) Right to get data corrected

ico.org.uk/your-data-matter...

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