Unbelievable

[Nackapan]

I emailed my concerns about B12 prescribing to my local NHS board ;Integrated care board ICB) in October 2023.

My concern mainly describing my B12 prescription being stopped/ challenged and on what grounds .

Also asking on what evidence / papers were the 2-3 monthly regimes set from.

Patients individual needs not bring met

The reply ;

The local flow chart on treatment.

A link to The Pernicious Anaemia Society.

I'd stated a I am a member!!!

Signed;

On behalf of

Complaints / nursing and quality

By

Pharmacist and meds

Optimisation engagement manager

Quality patient safety and governance.

An apology for late reply .

A long 6 month wait for nothing.

My question unanswered.

All these fancy titles not delivering the service they advertise.

[wedgewood]

Are you getting used to jumping through hoops ? You have amazing resilience!

[Nackapan in reply to wedgewood]

Probably always have 'jumped through hoops' Nothing worthwhile seems easy to get.

In my past work if you were told to jump

I'd rather meet or at least talk to people .

Emails are easy to write and are easily ignored!!

Or given 'lip service '

Like my local mp gave about treatment of b12 deficiency / PA

I've replied to that email.

I'd actually forgotten about it so not a bother.

[Jillymo]

Nothing new there then.

Same 💩 just another day.

[Cherylclaire Forum Support]

So wearisome not being heard, but worse still not being listened to. It seems a common problem now that there will be often be a forum to raise complaints/ individual issues/ concerns but that there is no real motivation/power there to react to what is brought forward. You get the feeling that the real decisions have already been made and openness to change is not required from these departments.

No ears on a sounding board.

wedgewood is right about your resilience.

To be stuck with a treatment frequency whose source no-one can identify makes no sense at all - especially when it seems for many of us to fall far short of adequate. The Optimisation Engagement Manager really needs to get engaged in that search to fully understand what being us feels like !

[JanCymru]

Hi Nackapan, wedgewood is so right about your resilience! I'm wondering if there is a next step having had such a poor response and waiting so long.... is there an ombudsman for decisions/responses like this? We are being poorly served in managing a genuine condition. I wonder too just how many PA (Autoimmune Gastritis(!) patients there are in the UK as a whole... and how many are poorly served, resulting in goodness knows how much expenditure by the NHS to 'treat' the results - i.e. neuropathy resulting in falls for one. Fuming, just fuming for you.

[Nackapan in reply to JanCymru]

I've replied !!

[Sleepybunny]

For anyone reading this thread who's having difficult health experiences with B12 deficiency in UK.

healthunlocked.com/pasoc/po...

"To be stuck with a treatment frequency whose source no-one can identify makes no sense at all"

Tracy Witty of B12info.com wrote a blog about this issue some years ago...will try to find it.

b12info.com/the-tanks-empty...

There may be more info in her blog posts about her campaign to get injectable B12 over the counter in UK.

b12info.com/category/petition/