Help Please: Has anyone ever started a... - Pernicious Anaemi...

Pernicious Anaemia Society

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Help Please

auntieb profile image
12 Replies

Has anyone ever started a petition with parliament? I just found this petition.parliament.uk/

and started typing one, but then read that you need 5 email addresses to start it, are 5 of you willing to give me your email addresses for this?

There are 22,951 members in this forum. You only need 10,000 to get a government response. If we ALL sign it and get our family and friends to sign, then surely something would have to happen? Please pm me if you re willing to let me have your email address.

Thank you x

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auntieb profile image
auntieb
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12 Replies
Sleepybunny profile image
Sleepybunny

Good luck auntieb.

What petition would you like to start?

If anyone is interested in petitions about B12 deficiency, have a look at this one started by Tracy Witty who runs B12 Deficiency Info website.

change.org/p/dr-june-raine-...

It's a petition to get injectable B12 available over the counter in UK.

auntieb profile image
auntieb in reply toSleepybunny

I do believe I already signed that one, but it's letting me sign again, so I am!

Nackapan profile image
Nackapan

I emailed PAS recently and the reply was they are lobbying parliament didnt state how many signatures on a petition or any response yet.

fbirder profile image
fbirder

Yes, I have used that site to put together a petition.

You tell them what the petition is. They tell you how to get five supporters. Once you have those five the petition goes live.

Most petitions aren't accepted because people do not read the instructions. Especially these two:

Petitions must call for a specific action from the UK Government or the House of Commons.

Petitions must be about something that the Government or the House of Commons is responsible for.

So a petition saying "Something should be done about the way that B12 deficiency is treated in the UK." will be rejected. Because it doesn't call for a specific action.

A petition saying "Parliament should tell all doctors to treat a B12 deficiency properly." will be rejected. Because Parliament doesn't have the power to tell doctors to do anything.

Something along the lines of - "We call upon the Secretary of State for Health and Social Care to set up a Parliamentary Committee to investigate the diagnosis and treatment of Vitamin B12 deficiencies in the NHS".

Make sure to use a title rather than a name (Matt Handcock will almost certainly not be around in a year's time).

Then you will need to include evidence to show why such action is required. Your best bet is to extract facts from the paper published describing the results of the PAS survey a few years back - pdfs.semanticscholar.org/2f...

auntieb profile image
auntieb in reply tofbirder

Thank you so much for those tips, great help. I actually started out with 'Please revisit the rules around prescribing B12 in the UK, and was then going to go on with some facts and figures and describe what life is like for most of us, and what could be done to make it better. From the few replies here so far, I gather this has been done before, with no success, so everyone is feeling a little jaded about it.

Rather than ask for B12 to be made available OTC, (which would be great) I want them to look at prescribing rules. Ask that doctors actually listen to their patients and prescribe B12 to suit individual needs, NOT just in accordance with NICE guidelines. I need to do a little research first, that is clear. Thanks for the very useful links to get me started.

fbirder profile image
fbirder in reply toauntieb

The other petitions, like the excellent one from Tracey Witty, do not have any real way of forcing the government to do something.

The PAS have already got an agreement that NICE will look into the diagnosis and treatment of B12 deficiencies. But that's going to take some time. And it's not really something that the government can influence.

Past petitions - petition.parliament.uk/arch... - haven't got anywhere near the 10,000 signatures needed to get Parliament to acknowledge them. Strangely enough the one with the highest number of signatures says "At present the serum level for B12 is not included with regular blood work and is set too low". The exact opposite of what the petitioner actually meant.

Rather than a Parliamentary petition, we would make a greater impact by writing to our MPs. pernicious-anaemia-society.... If you have had any problems with diagnosis or treatment then write a letter to your MP parliament.uk/get-involved/...

Keep the letter short and include just the major points. i.e.,

I have had symptoms of a B12 deficiency for 8 years.

It took me 6 years to be diagnosed. After I developed peripheral neuropathy.

My GP (name, practice address) refuses to treat me as recommended in the BNF (injections every two months) but gives me injections every 12 weeks (or tablets).

My neuropathy is getting worse and I am worried about permanent nerve damage.

Make sure the practice you are complaining about is in the MP's constituency. Try not to waffle. An introductory paragraph, the bullet points, a summary paragraph. If you email, be sure to include your physical address so that the MP knows you're one of their constituents, otherwise they cannot do anything.

If every MP got 20 letters like that in a month then it would be way more effective than any petition.

auntieb profile image
auntieb in reply tofbirder

Yes, great advice! I might go down that route first then. I'm pretty good at letter writing, lol. Just a quick question though. Before doing this, would it be best to write to my GP practice first? I have done that but it was more than 2 years go. This is a new battle with a new doctor. Obviously the first letter should be in my notes, but that doctor hs left the practice so I don't know.

fbirder profile image
fbirder in reply toauntieb

Personally, I would write to the GP. But I would cc: the letter (so that the GP can see who else it was sent to) to the practice manager and the local MP.

Or just to the GP and practice manager at first, then another letter to them, cc;'ed to the MP plus local radio, press and TV if the response to the first letter is unsatisfactory.

in reply tofbirder

Yes id certainly back that. Could Admin look at setting up a proposed document that members could sign up to. I think a good awareness poster for GP surgeries and Health Clinics might do a bit of good too.

fbirder profile image
fbirder in reply to

See the PAS website for posters:

pernicious-anaemia-society....

Sleepybunny profile image
Sleepybunny in reply to

B12 Deficiency Info website also has posters although I'm not sure GP surgeries would be willing to put these up.

b12deficiency.info/posters/

auntieb profile image
auntieb

Got it! I hope you will come visit me when I'm in prison, lol

Just kidding. I'm definitely up for stirring the pot (so to speak)

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