PA and self-injection on BBCSouth

[fbirder]

BBC South on the TV news just had a segment about somebody with PA self-injecting with B12 from Germany. I only came in partway through so I'm waiting for a repeat later on.

They had some medical representative saying that people must be wary when buying online (with no mention of the fact that it's perfectly normal in Germany) but then had a magic final bit.

"The BNF says that doctors are free to use their discretion on how often they prescribe. But, until they do, people like Carol (??) have no choice but to take matters into their own hands"

I think I remembered the name correctly.

[jillc39]

wonderful wonderful news - the more we can shine a spotlight on the whole miserable difficult area about b12d the better. I struggle through the reality gp surgeries programme each week in the hope that a patient with b12d will be seen....

[fbirder]

Just watched the repeat. It was Claire from Caversham (I wonder if she's on here). The presenter said that 6 million people in the UK have a B12 deficiency, which does seem a lot.

Anybody living in the BBC South Region should be able to see it again at around 08:55. It may be repeated in the evening bulletin at 18:30.

Annoyingly, the Breakfast show on iPlayer only shows the London regional news (which is doubly annoying as much of the time it's just a rehash of the national news).

[Snookiej]

I saw that too and it did mention that often treatment is insufficient for the sufferers which is why they look to self medicate. It would be great if it now made the national news and more research was done into the B12/PA Disease. The lady on the report likened the disease to having dementia and flu at the same time - very accurate.

[anniesensi]

Interesting!

[Jose651]

Keep er lit, 👍

J

[fbirder]

Much longer piece on the evening BBC South with some bloke called Martyn Hooper. They also interviewed a PA sufferer who has successfully negotiated 6-weekly jabs with her GP, although that's still not enough.

[Polaris in reply to fbirder]

Just watched it again with Martyn Hooper

Annoying that they repeated the BNF guidelines about GPs using their discretion but nothing on treating neurological symptoms on alternate days 'until no further improvement'.

[fbirder]

I think the evening one will be on iPlayer. The PA bit is about 6 minutes in.

[Gambit62 Administrator in reply to fbirder]

lunch time is on the i-player but evening isn't yet - they don't stay up for long

lunchtime is there until 10.45

bbc.co.uk/iplayer/episode/b...

[Gambit62 Administrator in reply to Gambit62]

did have a groan moment on the lunchtime broadcast when it mentioned production of healthy red blood cells and left it at that but hey ho! that's what you get in a world of sound-bites

[deniseinmilden]

Thank you for the link Gambit - a really good piece I thought.

[fbirder]

The evening broadcast, much longer and more detailed, is on iPlayer - bbc.co.uk/iplayer/episode/b... Starts at 7:44

[Forest1000]

Hi, the broadcast was shared on facebook, and that's how I saw it and shared with family, some who also have PA. I live in Wales, so wouldn't have seen it otherwise. If anyone would like to pm me with their fb name, I'll gladly share it. 😊

[Forest1000]

Hi, back again, I've just shared the broadcast of facebook, globally, so if you're on fb, it might be there.😊

[fbirder in reply to Forest1000]

The PAS and B12d facebook groups have also posted it, along with links to a few radio interviews.