GP refusing treatment - what to do next? - Pernicious Anaemi...

Pernicious Anaemia Society
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GP refusing treatment - what to do next?

JillMaryC
JillMaryC

I wrote to my doctor requesting confirmation of diagnosis of B12D, (diagnosed February and initially on 3 mthly injections). W anted to know and reasons for this, (not diet etc) to get clarity, and ask what was on my records. I had also consulted Martyn Hooper, as I was concerned about my nervous system health and wanted to take responsibility for my well being. I had been experiencing the usual deficiency pattern, plus Neuro symptoms, even after load dose (which I had to plead for but marked improvement). I requested doctor

to run a clinical trial of more regular injections, to address / prevent nerve damage. An Endocronologist i had seen had also written recommendeing to doctor I see a neurologist as was demonstrating neuro signs, muscle weakness etc. However, when I wrote to the GP I clearly said hospital had told me waiting time would be 8/9 months. I stated NICE guidelines, quoted B12D group, PAS, articles etc. However, today was told to make a routine double appt after the Neuro appt - so that would be summer 2019! What to do next? The doc is a senior partner. If I change Gp within practice, will they challenge a decision made by a colleague? What is the protocol? Is this why so many people SI? Can anyone advise best course of action? Thoughts would be appreciated.

11 Replies
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I changed the practise where I was not helped .with anything. Google the Surgeries in your area ,read the reviews ,and pick the one you like the sound of ,It really is a simple as that. Go to the new practise, tell them you would like to join ,fill in the form ,Don't go slagging off the one you have left. You will be asked to attend for an assessment ,where they will take bloods etc, Wait for the results,and then book an appointment. Easy Peasy

The problem with this is, having had some treatment your blood results will show high levels and you could be in a situation where they say that now you don't have a problem at all.

Very, very few surgeries are truly knowledgeable and there's no guarantee that you would be any better off. You can't "try before you buy".

Thank you. Yes, I agree, this is the difficulty about considering changing practices. It was good advice from squealer to read reviews, as found very poor feedback generally and indeed the practice manager doesn't even respond to individual queries or complaints. However, big decision to move surgeries, And, as you say, levels in blood will read drastically differently from initial reading. So, SI is a more independent route.

JillMaryC
JillMaryC
in reply to squeeler

Just read reviews for my surgery, and I am not alone! Will read around in other local surgeries. Big decision to move, but will consider options. Thank you.

I'm sorry to say it but yes, that's why so many of us SI.

It is nowhere near as bad as the thought of it!

Hi,

"and ask what was on my records."

Have you asked for a complete set of medical records?

In UK, maximum cost complete set of medical records £50

In UK, maximum cost set of test results £10

If finance is an issue ...in UK, it is free to view your records.

Would need a formal signed note requesting access and possibly an appointment with practice manager. You do not have to give a reason for requesting access/copies. Some surgeries in Uk have access to an on-line summary of results etc but this is just a summary and therefore may not have all info needed. May be worth asking for access to paper records, scanned documents/letters besides on-line summary.

Access to Medical Records (England)

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

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

Under the new GDPR rules it is now free to get a full copy of your medical records. Don't have the link to hand as just getting ready to go to work but will post it later.

Great advice, just checked out process on surgery website. Thank you.

Thank you for info and support. Much appreciated.

Hi,

A few more links that may be of interest....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

UK B12 documents

I'd recommend that UK forum members read all of these documents.

BSH Cobalamin and Folate Guidelines

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

Above guidelines make it clear that people with b12 deficiency with neuro symptoms (any cause of B12 deficiency) should have following pattern of treatment....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

"I was concerned about my nervous system health"

Is your GP aware that under treatment of B12 deficiency may lead to further deterioration including spinal cord damage?

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...

Have you had tests for PA (Pernicious Anaemia)? In UK, this would be an Intrinsic factor Antibody test. Still possible to have PA even if IFA result is negative. See BSH flowchart link.

Help for GPs

1) PAS website has section for health professionals.

pernicious-anaemia-society....

2) Has your GP seen this leaflet "An Update for Medical Professionals: Diagnosis and Treatment"? Access to PAS members only.

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

3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

Other B12 books I found useful

"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.

Are you a PAS member? May be worth contacting PAS again if you are.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

On one of your other threads, you posted some blood test results. Do you have all the results for Full Blood Count test results. I could not see results for MCV, MCH, MCHC, RDW and a few others. See link below about Full Blood Count.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

"W anted to know and reasons for this, (not diet"

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Coeliac disease

Have you been tested for Coeliac disease? NICE guidelines on Coeliac disease (UK document) suggest anyone with unexplained B12 deficiency, folate deficiency or iron deficiency should have Coeliac tests.

If yes to Coeliac tests, did you have both the tests listed below?

1) tTG IgA

2) Total IgA

The Total IgA test checks which patients have IgA deficiency.

People with IgA deficiency need different tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

H Pylori infection

Were you tested for H Pylori?

patient.info/health/dyspeps...

Some UK forum members have had help from B12d.org

b12d.org/

I am not medically trained.

OMG what an amazing reply, fabulous info and full of links. Thank you so much SleepyBunny. I will go through all the references. I am a member of PAS and gave GP all the info. She is not interested and handing over my care to await some specialist opinion, when she told me at the outset there is no specialist in this field. All the questions you ask re lines of enquiry, the GP has not followed up. Even though I asked could she test for Helio and coeliac etc. I questioned IF and I sent privately for test which came back negative, and Parietal Antibidies also neg MMA. I will take time to research all the info yiu gave me. So kind. Much appreciated.

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