NHS is infuriating.: This is more a... - Pernicious Anaemi...

Pernicious Anaemia Society

25,275 members17,620 posts

NHS is infuriating.

Dadvatar
Dadvatar

This is more a rant than a question. Just to recap. My daughter had a health screen privately which showed b12 at 127 with low folate. Went to GP who requested another test just to confirm. In the meantime I gave here oral supplements so that skewed the second test which was 255.

Over the last few days she has just slept constantly. She also has pains in arms and legs amongst other symptoms. So,After a argument with the Receptionist at the Drs, I eventually saw the GP.

She told me her blood tests were fine for PA. I stated she had only partially tested for Pa as no IF antibody test was done. Basically she thought the partial cell test was the IF test. Then she said her symptoms were not consistent with low B12. That’s when she asked me to stop shouting as here symptoms are exactly the same.

She eventually agreed to speak to the specialists at the hospital and phone me back at the end of the day when they would be free. OK that sounded better.

Anyway she just phoned me to say they would not give her B12 injections as her results are fine, but if we wanted to see a paediatrician she will send an appointment out in the post. Waiting times are up to 3 months.

Cannot get private appointment for 6weeks due to waiting list there.

So were are stuck.

Considering B12 from Germany.

Any suggestions or advice would be appreciated.

18 Replies

It is completely horrifying that your daughter's serious symptoms and original low B12 are being ignored for want of simple B12 injections! Have you tried writing to the surgery with latest BMJ research information and UKNEQAS recommendations, as they are surely less likely to be able to ignore this.

Not only does the latest BMJ research summary below state there is no reliable test, but the Dutch links on the r/h side of the forum state this too. I'm sure you know that the neurological symptoms you've already described in other posts mean it's highly likely that PA/B12 is the cause, and should be treated with injections without delay to avoid permanent damage.

bmj.com/content/349/bmj.g5226

(GP should be able to access full document behind a pay wall)

pernicious-anaemia-society....

stichtingb12tekort.nl/weten...

....................

b12deficiency.info/. Lots of information on neurological/ psychological symptoms as well as on writing to your GP here.

b12deficiency.info/blog/201...

The Pernicious Anaemia Society is closed at the moment but there are also articles for professionals available for members and they may be able to help further when they return.

Very best wishes for much better treatment Dadvatar.

Polaris
Polaris in reply to Polaris

PS. I and many others self inject successfully with Hydroxocobalamin from reliable pharmacists in Germany but, I agree, you should not have to resort to this for your daughter.........

Polaris
Polaris in reply to Polaris

amazon.co.uk/Could-Be-B12-P...

A copy of Sally Pacholok's book re. Pediatric B12 deficiency for the surgery might shame them too......

Yes I can only sympathise with you for that outrageous treatment . Do not worry about using German online pharmacies to source your B12 Hydroxocobalamin . They are very tightly controlled by the German Health authorities . The ampoules that I use ( Rotexmedica B12 Hydroxocobalamin depot) 1mg x1ml are actually used at some GPs surgeries here in the U.K. I use those ampoules because there is less liquid to inject than the other sort- Hevert 1mg x 2ml . I think that most self -injectors here use those brands .

It’s so heart-breaking for you . You could try phoning the PAS society and getting advice . But in know how stubborn the GPS can be . Very best wishes .

Don't blame you for having a rant.

If you are thinking of self injecting, your daughter's first injection needs to be at a doctors in case there is a bad reaction. This is rare but not to be risked.

Could you find a prIvate GP to give her the first one if you go down that route. Several people here have done that. They are more likely to believe the private results and you would need to explain about supplementing before the NHS test.

I can't think of anything else to help, except going back and beating up your ignorant doctor. It's so much worse when it's your child.

Hi,

Can only write a short post due to arm problems. I've written very detailed responses on TiredMomma 's thread a couple of days ago with lots of links.

Have you read Martyn Hooper's blog post below about Parents of B12 deficient children? It mentions children in care due to parents treating them without doctor's agreement.

martynhooper.com/2017/07/21...

Strongly suggest joining and speaking to PAS when office open.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

UK B12 blogs.

There are stories on these about young people with b12 deficiency.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

PAS articles/leaflets (access for PAS members only)

pernicious-anaemia-society....

"An Update for Medical Professionals: Diagnosis and Treatment" page 1 of articles

B12 deficiency in children

b12deficiency.info/children...

If you're in UK, have you considered contacting HDA patient care trust?

HDA patient care trust

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

hdapatientcaretrust.com/

I am not medically trained.

Thanks everyone. I’m angry that we are in a position I have to consider it. I’ve spoken to the Surgery again and they have at least agreed to do the IF antibody test. I have to phone Monday for appointment with nurse and no doubt that will be weeks away. I’m going to request another B12 test as she’s been off the supplements for a week so hopefully we may get a result that matches her symptoms.

I’m also going to send a letter and ask it to be kept on record, not that I think it will make a difference, but it will make them liable should anything happen.

Is there any information on how quick supplements leave the body of is it different for each individual?

Foggyme
FoggymeAdministrator in reply to Dadvatar

Hi Dadvatar. Following supplementation with vitamin B12, it can take between three to six months for B12 levels to return to pre-supplement levels (or maybe longer for some). It's difficult to be more precise because, as you say, each individual is different.

So unfortunately, re-testing a week following supplements will be of no value, since B12 levels will still be high...and it will probably allow your GP's to continue with the mistaken notion that B12 deficiency is not an issue (because levels are now within 'normal' limits).

You could try showing them the information I left in a reply to one of your previous posts (about problems with relying on serum B12 levels - both in terms of the test itself, testing following supplementation, and relying on them as the only determiner of B12 deficiency)...all as per previous reply, they should be looking at the results from her first low B12 test (the private one) and her continued symptoms of B12 deficiency.

Best of luck.

Yes, I agree you need to be very careful here. It's one thing doing it for yourself. It's quite another doing it for your daughter. You may not want to supplement if she's awaiting more tests, but if tests are all done, it is worth trying to raise her levels using large doses of sublingual B12, allowed to dissolve slowly. It may be better than nothing. She could do this several times per day. it's more expensive than injections unfortunately, but it can work for some people who don't absorb from food.

Unfortunately supplements take more than a week to leave the body. If the IF is positive you will be OK for treatment. (Even your GP can't ignore that?)

Unfortunately if the IF test is negative you will have a fight on your hands. GP's don't seem to know the test in not accurate and misses many people, 40 - 50% I think.

I agree with what those above have said and I'm sure you don't need the additional hassle but would you consider contacting the BBC Breakfast programme with a headline of something like "Am I to be forced to inject my daughter to stop irreversible damage for the sake of a £1 treatment? What is the NHS coming to?"

You might find higher powers will take up the case for you.

The ampoules from Germany are excellent and have saved my life. Injections aren't as bad as they sound and she could do it herself - countless kids are Type One diabetic and have to self inject several times a day. The first one could be done privately, or in the environs of a health centre or hospital.

You could go back to the GP and sit tight in their waiting room, stay calm and just quietly ask "why not?", refusing to leave until you have a full explanation, backed up by documentation. I did this and said I wouldn't move unless they gave me jabs or arranged care for me as I couldn't look after myself any more - but if I was given the jabs I could, and work, pay taxes, etc. I was quiet as by then I'd lost the ability to speak more than a word or two!

You have the advantage that as you are not deficient you are able to be coherent and are able to say that they are making your daughter suffer and continuing to withhold treatment is causing her neurological damage - this directly uses their "do no harm" pledge in the persuasion.

"Why NOT give my daughter the treatment the NHS guidelines suggest?"

And

"What proof do you have that it would be the wrong thing to do?"

Are hard questions to ignore, especially followed with

"I want to leave... once you have properly and fully answered my not unreasonable questions"

I don't know if anyone has been to A & E and asked the Drs there for treatment to be started? You could apologise for using up their time but explain that the GP has been so ineffective and something needs to be done now.

Any which way you go about it you have my huge admiration and best wishes. I wish I had you fighting for me! Good luck!

Ugh! I feel for you I really do. Can't imagine contemplating injecting my daughter although I know it's a reality for some.

Advice above is 👌

I would write a letter saying that "due to the surgery's refusal to provide treatment & follow the established guidelines (quote them in the letter) based on the first test (and not the second), that you are intending to purchase ampoules from overseas and inject them yourself as you feel you have been left with no other option. That you are writing to request advice/training in administering an injection and that you would like the first injection to be done under medical supervision in case of an allergic reaction"

Even if you don't fully intend to do it or you end up deciding on something else...ultimately this is the honest mindset you are in right now as a result of their refusal to treat...putting it in writing may be enough to make them sit up and take notice. If you're of a mind to give a little extra punch you could cc it to a body like PALS.

All letters from patient SHOULD automatically be stored on file. CC'ing it to a third party means if it doesn't happen then you still have a record of the letter somewhere else.

Before you do that it may be pertinent to ask for a copy of your daughters medical records. (You have a right but they may charge. Up to a max of £50 but if you are only asking for the last couple of months they shouldn't charge that much as charges "must be reasonable")

It's an eye opener to see the journal entries made by Dr's. By doing this you'll be armed with all blood results and everything that's been said about your daughter's health.

255 is also not a particularly "optimal" result. Since the IF test is so hit and miss and a negative doesn't rule out PA...you might want to ask if they will do an "Active B12" test. The test your daughter has had only gives the total amount of B12 in the blood. Up to 80% of that can be inactive. So an Active B12 test might be useful to you. Believe it's called HoloTC.

Always ask for copies of your lab results with ranges.

Good luck!

Hi I recently read somewhere on this forum of a place that are testing privately for PA and at a cellular level about 125.00 I think for four different blood tests. I was considering this myself as I do have diagnosed PA but I would like to know more about the cellular activity. Unfortunately I don’t know how to find this conversation trail but someone on heat may be able to ?

Hello Dadvatar, You've been given some excellent advice on here, but I strongly suggest you read the link b12deficiency.info/children... as mentioned by some of the others. I really hope you get somewhere with your GP, as I know how hard it can be to get your point over and have them listen.

Hi,

"you might want to ask if they will do an "Active B12" test"

Just to add that results of Active B12 (HoloTC) , MMA and Homocysteine tests are likely to be affected by any recent B12 supplementation.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

"It's an eye opener to see the journal entries made by Dr's."

"may be pertinent to ask for a copy of your daughters medical records."

I agree with above statements. I think it is useful to have a copy of medical records in case, test results, letters from specialists etc go missing in future .

Worth checking records for factual inaccuracies. GP surgeries have to change factual inaccuracies eg wrong name, wrong date etc. They do not have to change an entry in records just because patient disagrees with what is said but patient can request that a note is inserted in their records giving their side of the issue.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

"IF test is so hit and miss and a negative doesn't rule out PA"

"Unfortunately if the IF test is negative you will have a fight on your hands

Links below mention Antibody Negative PA.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK.

Other UK b12 documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises that patients who are symptomatic for B12 deficiency should be treated even if b12 level is normal range. BMJ is generally well respected so GP may take notice of this article.

"just phoned me to say they would not give her B12 injections as her results are fine"

BNF

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

NICE CKS

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

There is a useful summary of mainly UK b12 articles in third pinned post on this forum.

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. I gave a copy of above book to my GPs.

"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 a paediatric version of above book.

"Could It Be B12? Paediatric Edition: What Every Parent Needs to Know"

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Neuro Symptoms

Has your daughter got any neurological symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance issues plus other possible neuro symptoms?

If yes, it may be worth mentioning to GP the risk of further neurological damage if B12 deficiency is not treated including potential spinal problems.

PAS membership gives access to useful articles in PAS library section.

pernicious-anaemia-society....

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

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

There is an article about juvenile PA in above link.

NICE CKS link further up post mentions that GPs, of patients with b12 deficiency with neuro symptoms, should seek advice from a haematologist.

If she has neuro symptoms, has she been referred to a neurologist?

Be well-prepared for any specialist appts as sadly B12 deficiency is not always well-understood as it could be by specialist doctors.

Letters to GP about Under Treatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

"the second test which was 255"

Letters to GP about adults/children being symptomatic for b12 deficiency with an in range B12 result. Lots of useful info in this link.

b12deficiency.info/b12-writ...

It mentions functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting into the cells. GP may not be aware of possibility of functional B12 deficiency.

"My daughter had a health screen privately which showed b12 at 127 with low folate."

Has she been tested for Coeliac disease?

Coeliac Disease

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version) link below, recommends that anyone with B12, folate or iron deficiencies should be tested for Coeliac disease.

nice.org.uk/guidance/ng20/c...

Coeliac blood tests

coeliac.org.uk/coeliac-dise...

Has diet been excluded as a possible cause of low B12?

Does she eat plenty of B12 rich foods eg meat, fish, shellfish, eggs, dairy and foods fortified with b12? If yes, then diet as a cause is less likely and it becomes more likely that there is an absorption problem.

Has she been tested for H Pylori infection?

patient.info/health/dyspeps...

Family History

Is there a family history of auto-immune conditions? If yes, does GP know about family history? A family history can increase chances of developing an auto-immune condition. PA and Coeliac disease are auto-immune conditions.

Thyroid Disease

Has she had any thyroid tests? Quite a few on this forum have both B12 and thyroid problems. In UK, sometimes only TSH is tested but this will not give a full picture of thyroid function.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

May be worth putting any thyroid results on Thyroid UK forum on HU.

Misconceptions about b12 deficiency (English language article from Dutch B12 website)

stichtingb12tekort.nl/weten...

Vitamin b12 deficiency in children ((English language article from Dutch B12 website)

stichtingb12tekort.nl/weten...

"she said her symptoms were not consistent with low B12"

Has GP got a list of all your daughter's symptoms?

I gave my GPs a copy of PAS checklist with all my symptoms ticked plus I added any symptoms not on list. Probably worth putting symptoms list in a brief as possible, polite letter addressed to GP as this should ensure it gets filed with medical records. I sometimes include quotes/info from relevant UK documents/articles . I think it's sensible to keep own copies of any letters written.

Local area B12 guidelines

It's possible that GP is using local area NHS guidelines on B12 deficiency. Some of these UK local guidelines have not been updated for years and may not take account of BSH Cobalamin guidelines which were published in 2014.

Might be worth getting hold of a copy of local area guidelines and seeing how up to date they are by...

1) Internet search

2) Search on local area NHS website

3) FOI (Freedom of Information) request to local area NHS website

Have you asked GP surgery what guidelines they use for treating B12 deficiency? Think request may need to be made via practice manager. May be possible to get a copy.

If you get hold of her medical records, may be worth checking if correct reference ranges have been used to interpret blood tests. As she is not an adult there may be a separate paediatric ref range for some blood tests.

Link about "What to do next" if B12 deficiency is suspected

b12deficiency.info/what-to-...

Blood test links

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count (FBC) and Blood Film

Has she had FBC blood tests?

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

There can be useful clues on full blood count (FBC) results as to whether iron, b12 and folate deficiencies are possibilities.

Folate Deficiency

patient.info/doctor/folate-...

It's important that if a person is treated for folate deficiency, any co-existing B12 deficiency is also treated. See Management section in above link for more info.

Local MP may be interested in case of someone who is not getting appropriate NHS treatment.

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

Good luck with getting help for your daughter.

Sounds all too familiar to my experience.

A formal complaint to the surgery manager, referral to CQC by making a telephone call are how I progressed.

It didn’t achieve a huge amount by itself. I continued self medication and finally saw a private specialist. He concurred with B12 deficiency but only prescribed loading doses and ignored NICE guidance. Then I got a referral to a gastroenterologist who wrote to my GP confirming non specific B12 deficiency and advising ongoing injections. This took over 1 year and I was going through BUPA for the private consultations. Finally in this process I got to see a GP in my surgery that I knew I could trust. He did the leg work, did his research and moved forward to injections every 2 months. There are not enough GPs like him - he was just one of 5 GPs I saw, that’s a miserable ratio for knowledge on this subject.

Hopefully it won’t be that bad for you but having to self medicate to stay sane, literally, is often the only option, no matter what this might do to the future blood tests.

Hi, you have been given some amazing advice here, just wanted to add the the b12 deficiency website is a fantastic resource, and will should be able to help you. You do have to sign up but it’s free, just google b12 deficiency org and it should be the 2nd or 3rd site, it’s a charity organisation. I have used them and am slowly feeling human again after way too long. Good luck xx

Good the hear you are fighting your corner. I too would like to take my case further. I have requested my medical notes and letters. How do you complain to NHS England? I was going to see the information, if they let me have it, and then go to the PALs at the hospital, but I would like it to be taken seriously and not just have a statement from me left in my notes that might be disregarded.

You may also like...