New Survey for PAS members: ... - Pernicious Anaemi...

Pernicious Anaemia Society
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New Survey for PAS members

Sleepybunny
Sleepybunny

martynhooper.com/2016/04/09...

Hi,

I noticed that a post on Martyn Hooper's blog mentioned that there will soon be a survey for PAS members on the members page. I think it's aimed at those members whose Gps are willing to depart from standard B12 deficiency treatment.

16 Replies
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Hidden
Hidden

Not my gp then! Look forward to seeing it. :-)

Lisahelen
Lisahelen in reply to Hidden

Ditto! 

Hopefully there will be enough respondents to persuade GPs that off-label prescribing of B12 is relatively common. Then those reluctant ones might be more likely to join them.

It's up and running.

If you are prescribed B12 injections more frequently than every other month then please do complete the survey if you're a PAS member.

If you're not a member, then please join and complete the survey. The more people tell doctors that it's not unusual for their colleagues to do more frequent injections, the more likely they are to follow suit.

jillc39
jillc39 in reply to fbirder

I cant find it..............

I have just followed the link to PAS and couldn't find the survey!

fbirder
fbirder in reply to jalbey

You do have to be a member - pernicious-anaemia-society.... - which costs £20 as a one-off payment (although a standing order for a regular donation helps the society). There are several useful documents only available to members.

I don't have £20 to spare at the minute but have been prescribed alternate day injections long term so would like to do the survey... is there any way around needing to be a member or do you know how long the survey will be available?

Hi jillc39

There is a red tab on the home page "Member Survey- Frequency of Prescribed Injections". If you click on that you have to log in with your membership details and then it takes you to start of survey.

Muldutch, perhaps you could ring the PAS office and ask how long the survey will be up for?

01656 769 717

Office open from 8am till 2pm every day except Sundays.

Muldutch
Muldutch in reply to Sleepybunny

Thank you :-)

Thanks for the reply. I am a member so will try again.

fbirder
fbirder in reply to jalbey

Member Homepage

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Surveys

Frequency of Prescribed B12 Injections

Dr Seage Questionnaire

Tests at Diagnosis

Research Protocol VS

PAS General Survey 2014

The problem is that the first question is whether there is a confirmed diagnosis of pernicious anaemia. If you are not able to say yes to this i.e. confirmed by your doctor then you cannot proceed. Only 50% of people with PA will have positive intrinsic factor antibodies and therefore get a diagnosis from their GP. Many GPs don't bother testing. Mine was not interested in testing but I asked for it- negative. Plus I didn't have anaemia but did have a lot of neurological problems so GP never officially diagnosed PA even though I think I do have it- positive family history. Despite all this, my GP prescribes monthly hydroxocobalamin.

Yes BCSH guidelines state there is IF negative PA but most GPs don't know that. Most GPs don't know that macrocytic anaemia is not mandatory for diagnosis and neurological problems can be the problem without anaemia in 30% of people.

This survey rules out 50% of people with pernicious anaemia and does not recognise B12 deficiency due to other causes (or unknown/ not investigated causes).

I understand that they may want to specifically look at pernicious anaemia but the symptoms are caused by the B12 deficiency. I am a bit disappointed that I cannot contribute to this survey due to the lack of understanding about diagnosis by GP as I get monthly injections.

I've not been tested for anti-IF antibodies, but all the medics I've seen (even the knowitall haematologist, eventually) agreed that I have PA. The combination of B12 deficiency, anti-GPC antibodies and gastric atrophy (from a gastroscopy) was enough. I would argue that low B12 with either of the other two (or megaloblastic anaemia) would be a fairly firm diagnosis.

I would imagine that the restriction is applied to make it more difficult to contest the results. There are a lot of people out there that seem to think that B12 is some sort of magic potion (just read the 'reviews' of any B12 product on Amazon) for healthy people. Otherwise there wouldn't be a market for 'energy boost' treatments at many private clinics.

If it weren't for this restriction, naysayers could suggest that the respondents included such people, making the survey worthless.

Please note, I'm not saying that you (or anybody else without a PA diagnosis) is one such person. We all know how some medics can refuse to step outside their narrow little world view.

Intriguingly, Martyn Hooper himself wouldn't be able to take the survey. A while ago he wrote a blog article with the title 'I no longer have pernicious anaemia' - martynhooper.com/2015/09/24...

Secondchance
Secondchance in reply to fbirder

I think the issue is that pernicious anaemia is a misnomer which confuses a lot of people, including doctors. 30% of people will not get anaemia, there is an inverse correlation between those with anaemia and those with neurological symptoms due to B12 deficiency.

I completely understand wanting to limit the survey to those with true illness rather than people taking B12 like some health fad, the way some celebrities do. I think we are a very long way off a true understanding of B12 deficiency and all its causes. Only concentrating on one possible cause of B12 deficiency and the anaemia side I think may help perpetuate the problems.

I read Martyn Hooper tested IF negative initially so he would not have been eligible to do the survey. He later tested positive. As testing is so poor, and understanding of the different manifestations is appalling, we still have an uphill battle.

There was a fashion in the 50's for giving people B12 the Dr referred to as Feelgood subsequently gave that as well as amphetamines etc to Jackie Kennedy and the President all without a diagnosis of pernicious anaemiaB.It is a mystery as to why UK physicians are so restricted regarding the amount of injections. Also as to the patient self administering it is so simple to do.I did it for years .after all people who have diabetes give themselves insulin many of them children.

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