More injections cancelled

[Ghound]

Having been pleased to get my routine B12 injection only last week, today received a letter for my GP practice postponing future ones.

Letter contained the usual rubbish, obviously cut and pasted info as per the letters others here had already received, stating that I will have enough B12 stored in my liver to last a year !

A strongly worded (but factual & polite) letter of complaint is already on its way to my GP practice, but I will also follow the advice given here regarding forwarding this information to the PAS.

So much for all the media publicity about GP's being " Open for business " !

Well, I have had a long enough fight to get my health back to even a semblance of normality, so I will not be taking this lying down. If I don't receive a response within a reasonable time frame I will be escalating my grievances, thinking local press, MPs etc. ...

Thanks to everyone on here for all the excellent support and information you make readily accessible to us all.

[Misty-lady]

I had a text cancelling my injection - I rang & they offered me tablets which are useless in PA so I requested to self inject & can now go to surgery, meet nurse outside to handover the ampule/needles etc (I’m a RGN, retired 2yrs ago after 33yrs)

I’m in Wales & apparently the majority of practices are switching to tablets which I’m not having none of .... can you imagine trying to get your injections back after lockdown?!

Good luck x

[Sleepybunny in reply to Misty-lady]

Hi Misty-lady,

Are you a PAS member?

You could ring their helpline if you are.

PAS support groups are not meeting during pandemic but if you're a PAS member you may be able to speak informally to one of the group co-ordinators.

PAS support groups in UK

pernicious-anaemia-society....

Have a look at my replies in this link to another thread on the forum about someone whose B12 injections have been affected. You may find the info useful.

healthunlocked.com/pasoc/po...

[Ghound in reply to Misty-lady]

Thank you ! I'm also a former RGN. Glad you're making a stand, good luck to you too ! x

[Ghound in reply to Misty-lady]

Sorry Misty -lady, somehow my reply to you jumped downwards - please see below, thanks x

[Sleepybunny]

Hi Ghound,

I hope your determination gets you the treatment you need.

The person who runs B12 deficiency Info website may also be interested in hearing about the letter you received.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

You may find there is interest from local and national TV and Radio as well as newspapers and online news.

[Ghound in reply to Sleepybunny]

Thanks Sleepy bunny for all the excellent information, you are always there for everyone, much appreciated x

[Fedup2020]

Hi could you tell us what you wrote in your letter"to your gp as I'm going to do the same.

Thanks

[Ghound in reply to Fedup2020]

Hi, as an introductory letter I've tried to keep it succinct, as I feel people are put off reading if a letter is too long and rambling.

Therefore stuck to " evidence based " facts,

eg. mentioned the updated guidance arising from the meeting with PAS and the BSH ( info supplied in post from Sleepy bunny )

Reminder of NICE guidelines for PA treatment and fact that the licensed treatment for PA in the UK is injection of B12.

Reiterated facts about difference between dietary deficiency and PA, citing lack of evidence that PA patients are able to absorb oral treatment.

Also the liable consequences of missing injections and that most patients have symptoms returning well before injection due date.

Queried all the recent publicity in the media which assures the public that the NHS is "open for business " and "there " for us !!?

Basically I included the info that's available from everyone here and from PAS website.

As I said, in the interest of brevity, I've omitted my own personal experience, reserving that for if / when I need to take things further !

Cc'd to the Practice Manager, all GP partners and the clinical pharmacist attached to the practice whose signature was on the letter I received.

Am giving them the chance to reply to me and hopefully rescind their decision before I escalate my complaint to health board, MPs, local press etc.

Hope this helps and good luck with your letter 👍 x

[Fedup2020 in reply to Ghound]

That is so helpful thanks so much 👍

[Ghound in reply to Fedup2020]

Ps: Of course I also included the fact that the World Health Organisation regards B12 injection as an ESSENTIAL medication ... x

[Fedup2020 in reply to Ghound]

Cheers again.