Stopping B12 injections.

[briarhillcat]

Hello, I have just read that Macduff medical centre have just stopped all B12 injections until further notice. How many more places are doing this? It is not right. They said that patients can get tablets from the chemist (and we all know they don't work!) So I think we c an expect further people needing help. Such a shame.

[fbirder]

1. Phone them and tell them that you have a recurrence of symptoms. Tell them that you're worried about permanent nerve damage.

2. Write to them. healthunlocked.com/pasoc/po...

Join the PAS and ask for their help.

4. Seriously think about taking your healthcare into your own hands by self-injecting.

[Sleepybunny]

Hi,

Links that might be helpful....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

May be worth talking to local MPs/devolved representatives about difficulties in getting treatment.

Tell NHSE about treatment concerns during pandemic

pernicious-anaemia-society....

BSH guidance on B12 treatment during pandemic

pernicious-anaemia-society....

Read blog posts on B12 Deficiency Info website.

b12deficiency.info/covid-19/

fbirder makes a good point about mentioning concerns over permanent nerve damage.

See links below.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

I am not medically trained.

[Midnight_Voice]

Lay *off*, Macduff!

[Janma123]

Hi briarhillcat, our GP surgery, a few miles south and east of you stopped the injections last year and haven't yet reinstated them. Mt hubby was given the 50mcg tablets on 'minor ailments' prescription from the chemist but I now buy 1000mcg from a local pharmacy (about 10 miles south of Macduff). They work a little bit for him but he was so anti the injections as he didn't get frequently enough and didn't remember the time (about1 to 8 weeks after his injection) where things were good. He only remembers feeling ill and being in pain for several days after the injections and lousy and tired before them!

[briarhillcat in reply to Janma123]

So many symptoms with lack of B12 injections, this Covid is making things worse, as so many places will not give injections now. Good luck.

[Ghound]

Oh here we go again- this will be Grampian Health Board 😠 I'm due my injection next week and my I'm expecting to be sent away with a flea in m ear, the excuse being "Covid vaccination" . This despite the fact that my local surgery is now sending their patients to mass vaccination centres

[Sleepybunny in reply to Ghound]

Tried to find Guidelines on Management of B12 deficiency for Grampian but no success yet.

Found these for Lothian

apps.nhslothian.scot/refhel...

News story about treatment of B12 deficiency in Grampian.

grampianonline.co.uk/news/m...

[Ghound in reply to Sleepybunny]

Thanks Sleepybunny for doing all that research .Grampian seem to keep their cards close to their chest, I have never found any guidelines either.

I did however receive a reply from the Director to my letter, which was condescending and insulting in the extreme.

I was so incensed that I couldn't, and still cant, trust myself to pursue a complaint and remain civil.

I do however intend to report it to the Health Ombudsmen when Covid settles down.

I did write to that MP in the news article, who it turns out also has PA ! but even HE got nowhere with Grampian Health Board.

It seems they have just pulled the 'Covid Card ' in response to every complaint !

Thank you again to you and everyone on here who gives their time and knowledge so freely in order to help us all. Xx

[Sleepybunny in reply to Ghound]

"I have never found any guidelines either"

Have you tried submitting a Freedom of Information request to your Health Board asking

for a copy of/how to access their local guidelines/treatment protocol on Management

of B12 deficiency?

May also be worth talking to your local MP/devolved representative to see if they can help track the local guidelines down for you.

[Ghound]

Well, I jumped to conclusions earlier.Amazingly I have just managed to book my injection at my local practice ( Westhill, Aberdeenshire ) without any problem.

Briarhillcat , I hope you have the energy to take fbirder and Sleepybunny's advice and challenge your surgery in Macduff.

As we've been saying for the last year, it's unacceptable and outrageous for everyone with B12 deficiency to be treated like that.

Wishing you all the best in getting your injections reinstated. xx

[briarhillcat in reply to Ghound]

Hell, so glad you have got things sorted out. My surgery is not in Macduff. I just mentioned it in case there were other people who maybe did not know and wanted to maybe look further into things. I am in Turriff and I now self inject. They have reinstated in, but they will only do them every three months and I cant go that long. I looked after my dear husband for 8 years and am just feeling it now. But we did have 53 married years together. I think we will all feel better when Covid is gradually being overcome. Take care of yourself. Briarhill Cat Meow.

[Ghound]

Thanks, but yes, times are especially difficult for PA patients just now. Glad to hear you self inject, I do too.

I'm so sorry about your husband, it's wonderful you had such a lovely marriage.

At least nothing can take away the happy years you enjoyed together.

You take good care of yourself and stay strong.

Best wishes,

GHound - Woof ! 🙂

[briarhillcat in reply to Ghound]

Thank you, We just have to keep going, and remember the happy times. Briarhill Cat. Meow to your Woof.

[Ghound in reply to briarhillcat]

Very true ! thanks - and woof again 😀 xx

[briarhillcat in reply to Ghound]

From the Cat and the Dog to all of us! Meow. Woof. Take care of yourself. x Briarhill Cat.

[Ghound in reply to briarhillcat]

And you all too ! 😀😀 xx

[Sleepybunny]

Hi,

Just thought I'd include a reminder to readers of this thread that I think threads from HU sometimes appear on other websites so take care with protecting your privacy.

[Ghound in reply to Sleepybunny]

Hi, thanks for the reminder, very wise words.I was aware that I was getting close to the edge regarding my privacy, but took a calculated risk as it is so pertinent to our local situation. xx

[Sleepybunny]

Some links for others in Scotland that might be of interest.

Newspaper articles from 2020 about patient with B12 deficiency struggling to get treatment

eveningtelegraph.co.uk/fp/i...

And a positive follow up article

eveningtelegraph.co.uk/fp/b...

I wonder if going to the press ensured the positive outcome?

Scottish Petition about B12 deficiency

parliament.scot/GettingInvo...

Petition was first submitted in 2011 and last correspondence listed was in 2018.

Click on the list of underlined links to see info submitted.

An internet search for "Scottish petition B12 deficiency" brings up other relevant links.

Health Boards Scotland

scot.nhs.uk/organisations/

Members of Scottish Parliament

theyworkforyou.com/msps/

Scotland MPs

members.parliament.uk/regio...

NHS Scotland link about B12 and folate anaemia

nhsinform.scot/illnesses-an...

Includes a statement that symptoms of B12 and folate deficiency can occur without anaemia being present.

Support groups in Scotland

Hopefully meetings will start up again at some point in the future. Some might have online meetings.

There is a Thyroid support group based in Kilmarnock that welcomes people with B12 deficiency.

healthunlocked.com/thyroidu...

There is a PAS support group in South Scotland although it needs a co-ordinator. PAS is always happy to hear from people who want to set up new PAS support groups.

pernicious-anaemia-society....

[Sleepybunny]

Hi,

Just wondered if forum members from Scotland were aware that a Scottish National Formulary is being developed.

This will give recommendations on what drugs/medicines can be prescribed in Scotland and may affect what GPs can prescribe for B12 deficiency.

Scottish National Formulary development process

emig.org.uk/wp-content/uplo...

I believe at moment that the BNF (British National Formulary) is used in Scotland.

BNF

bnf.nice.org.uk/

BNF for children

bnfc.nice.org.uk/

BNF Hydroxycobalamin - adults

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

BNF Hydroxycobalamin -Children

bnfc.nice.org.uk/drug/hydro...

[Barony]

Hi I have also had my B12 injections stopped until further notice. I attend the Stockbridge Health Centre in Edinburgh, and I was told it was safe to do this.