Where in the world are you? - Pernicious Anaemi...

Pernicious Anaemia Society

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Where in the world are you?

Barneyboy48 profile image

It would help enormously if contributors and posters declared which part of the world they are in.

Obviously we are in different countries where health services are run differently although we are all suffering with a similar ailment.

By declaring our roundabout locations the people who are following the posts at least have some idea of what they face when they come up against their particular health system.

I am in Wales, UK. So my immediate port of call is Welsh NHS.

73 Replies

I'm from the USA.

Hi! Brazil here. Our public health service is limited, so all my treatment (doctors, tests and everything involved in a injection) is done privately.

I’m in Essex in the Uk

I'm from sydney Australia

I'm an Essex girl living in Suffolk! 😜

I’m a northern girl living in suffolk

Welcome to the sunny South!

(On this very grey morning, but hey! 😜 😁).

Glasgow in scotland me 👍

Me too in Clydebank

Nice 1You self inject?

Ive been concidering it

Always tired and a postman 🙄

I do self inject. My GP refuses to budge from every 12 weeks, I’m on my knees by then. I decided to try every four weeks and it’s helped. I was ill health retired at 58 and don’t envy anyone trying to keep to a time schedule with PA and various other auto immune conditions☹️

Sallyannl profile image
Sallyannl in reply to Twaddletop

It such a shame that our working lives are cut short for the sake of a basic vitamin. I'm sure I'd be still working now if I'd been given more injections at the time.

ILive in England.

Hi,. Agreed, early retirement from teaching at 57. Unfortunately I didnt have a diagnosis at the time so it was all very nasty and sad. Doctors said it was depression because my mother had died. In the end a doctor under GP training found it. 4 fully qualified, long standing GP s didn't even think of PA.I'm from SE London.

So many in the same boat, what else can we do when we cant even function, let alone hold down a job .... enjoy you retirement !

Yeah its toughThe forgetfullness is annoying

Miss feeling normal

Im lucky if after 4 weeks i still feel a bit better

Not sure about self injecting

Dont particularly like needles either 😞

I’m used to self injecting as I been on biologics (PsA) for years. Get someone else to do it for you. It’s really painless. The wee hardest bit with my arthritic hands is trying to draw the injections up .

SI is nowhere near as bad as the thought of it! And feeling better and then gradually improving is wonderful. Plus you soon get used to it. I've done every day injections for over 6 years now and my biggest struggle is remembering whether I've done it yet or not - and that's not because I have memory issues any more - it's just so easy and common place that I don't notice that I'm doing it. Honestly!

Phobias of things can be overcome. Try getting a load of needles and syringes and put them in all the places you go to regularly until they become "part of the furniture" like pencils and pens and cutlery would be. Once you're at that stage it makes things a lot easier.

Anything is worth getting your life back!

Good luck!

Eloise81 profile image
Eloise81 in reply to Twaddletop

I’m in Scotland too & was reduced from monthly to 12 weekly & it was a fight for that! Don’t know what GPs are up to but the whole NHS is going down the tubes….only my opinion!

Twaddletop profile image
Twaddletop in reply to Eloise81

It seems that way Eloise until you really need them. I found myself critically ill out of the blue just over three weeks ago. Everyone from the paramedics to the consultants, nurses etc were fantastic. The food was gross but you can’t have everything. I don’t know why PA is sidelined the way it is. I guess we’ll all have to self inject meanwhile x

Eloise81 profile image
Eloise81 in reply to Twaddletop

That’s really good you were well looked after & hope you’re well on the mend. Haven’t been in your situation, thankfully but my sister needed attention & having waited a couple of weeks to actually speak to a GP, she was told they didn’t deal with her problem anymore!! 🤷‍♀️🤷‍♀️ A GP friend has hinted that this is the way Surgeries are going on now, so I’m not surprised A & E Depts are over-run…..I do feel sorry for them. This then begs the question why GPs get paid so much!!

Twaddletop profile image
Twaddletop in reply to Eloise81

I have no idea how much GP’s earn but you couldn’t pay me enough to do their job. In saying that, I was a teacher and many people say the same about that😊 My daughter needs to have her ears syringed from time to time and that is a service the NHS no longer provides. I’m in the fortunate position to be able to pay for a private consultation if I need to. Many people are not. Covid has stripped an already underfunded organisation. to the bone. Most of the GP’s I know have second jobs eg out of hours, police surgeons etc. I guess they all want to retire at an early age.

Sallyannl profile image
Sallyannl in reply to Twaddletop

Paying for ears to be syringed ! Already I forked out over 10k for operation now they want me to go private for physio .(different condition)Afraid they are going to force people more and more into private treatment by withdrawing services which were standard treatments.

Trouble is now medical insurance is probably far too expensive for the most of us!

Perhaps if we had the right connection or name (boris) treatment would be first class.

Twaddletop profile image
Twaddletop in reply to Sallyannl

Sadly, I think you’re correct. There is now a two tier health system. ☹️

Crikey!! How on earth do GPs do a second job on top of full time GP work -its all encompassing.....so I thought! I dont know any GPs with second jobs though know plenty are part time as cant cope with the stress of full time GP work.

I think many GP’s are part time in their practices to allow for these second jobs. It’s probably light relief for them! I couldn’t do their job and I don’t envy them one little bit.

Yes I dont envy them either.....but having picked it for their careers they have a duty to look after their patients effectively. However the reality is that unless its blatantly obvious you are on your own trying to do what is effectively the GPs job. None of us would be on here seeking ways forward if our GPs really supported us and are proactive in moving things forward for us. However you look at it .....its just wrong that many are forced into sorting it out ourselves. .

That is true☹️ PA is not treated with the gravity it commands.

I am in Aligarh India

Hi, I am in the UK Birmingham West Midlands

USA

It is great that members are responding but, unless readers check posting history, these responses will disappear into ancient history all too soon.

May I suggest those who have not already done so add their location to their profiles?

Click on your avatar/icon/name and you can get to your profile.

Unfortunately for the Original Poster, they do not allow Wales - but do allow United Kingdom. But more precise detail can be included in the text, if you wish.

Barneyboy48 profile image
Barneyboy48 in reply to helvella

We have a devolution issue with healthcare in Wales.

If formal complaints need to go in it's apparently a different procedure and organisation that has to be addressed.

The UK is not a United Kingdom unfortunately.

helvella profile image
helvella in reply to Barneyboy48

At least there are no prescription charges in the UK outside England. :-)

Excellent suggestion - as always from you! Thank you so much for all your contributions and care on here.

I’m in the southeastern part of the state of georgia, but spent a large part of my childhood in Europe.

I am in Spain. The national health service is brilliant. B12 is OTC.

Sallyannl profile image
Sallyannl in reply to Carlosdoug

🤢 green with envy 😜

"B12 is OTC"

Wistful sigh.....

I'm in England, UK.

There are campaigns in UK to get B12 ampoules available over the counter but no luck yet...

Just to be contrary, I still get mine from Amazon.de. Easier by the hundred.

Ryaan profile image
Ryaan in reply to Carlosdoug

Someone needs to start smuggling B12 into UK.

E_lizab8 profile image
E_lizab8 in reply to Carlosdoug

Im in Spain too and lots of other things are available OTC though officially supposed to be prescription only.

Lanarkshire . Scotland

Hello, I am in northern Sweden

Great suggestion Barneyboy48. I'm in Kent (Medway), UK.

Unfortunately the NHS here has not been very effective at diagnosing and treating my symptoms. I've had 20 yrs of on-off treatment & question whether some of my symptoms date back 20 yrs prior to this.

doityourself profile image
doityourself in reply to LFKent

Hey LFkent. I sail on the Medway (when energy levels allow)!From Sidcup.

LFKent profile image
LFKent in reply to doityourself

Hi doityourself. It's good to hear from you. Sailing on the Medway sounds lovely. I bet its energy intensive so can appreciate your comment 'when energy levels allow'. I hope you are well and that your symptoms don't prevent you from sailing too much.

I’m in Australia (Sydney) but moving to Ecuador next month. Would love to know if anyone here is there!

I'm in FL, USA, home of the "make as much money from the patients and insurance companies as you possibly can."

West Wales

I am in the USA

Cymru/ Wales Cardiff

Hi Barneyboy48,I too am in Wales, UK.

It’s lovely to see we are a global community 😊 thanks Barneyboy48. I’m in Lancashire, UK, my gp gives me 8-weekly injections as my levels were still really low after loading doses and 12-weekly injections. They won’t retest or increase any further, so I get hydroxocobalamin from Germany and self inject weekly. Initially I did every 2 days and then spaced it out more. I try fortnightly every so often but I get eyelid twitches, scalp and skin crawling, and tinnitus creeping back in.

I'm in England

Hi everyone, I'm just outside Aberdeen, Scotland. Wishing you all the very best x

I’m in Northants, England and I’ve been SI for a while as it’s only given 3 monthly at my Dr’s. Although now even that I do myself as they’ve stopped doing it at the surgery.

Bluedragon profile image
Bluedragon in reply to Jb01

I’m Northants too 😊. I just SI after bad experience at previous surgery.

i agree /southeast essex and if anyone would like to meet up ( southend/leigh area) please pm me.

Hi, like you I am in the UK, NHS, Eastbourne, East Sussex I have been having B12 injections for 4/5 years every 12 weeks.

I have now been told by the HCA, that it is 13 weeks or 3 calendar months!!

I hope this will not make any difference to the symptoms etc.

Sleepybunny profile image
Sleepybunny in reply to Frizz16

Have you checked the local guidelines on treating B12 deficiency for your CCG?

BNF link below suggests maintenance jabs every 2 months if neuro symptoms are present.

BNF Hydroxycobalamin

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

I suggest you start your own thread on the forum. There's a lot of info forum members can pass on to you.

UK Essex

England

Notsogreat Britain… Great Britain, once -upon -a- time.

Barneyboy48 profile image
Barneyboy48 in reply to Ryaan

NHS - free at the point of delivery!

I stopped clapping and banging pots after the first week when I realised what was going on.

Hi, I am in Edinburgh Scotland

I’m in New Jersey, USA

Im in South Yorkshire, uk

Hi,

For those of you in the UK

Prior to pandemic there were PAS support groups in UK.

pernicious-anaemia-society....

Not sure how these are currently operating.

Maybe some of them have online meetings?

PAS are always keen to hear from people wanting to set up new PAS support groups. Some current groups need co-ordinators.

PAS contact details

pernicious-anaemia-society....

B12d.org have in the past had both face to face meetings near Durham and online meetings.

Not sure how active the group is now.

b12d.org/index

Next link has links to support for Dutch, Norwegian, Danish and Swedish patients

b12deficiency.info/very-use...

England.

I'm an Essex girl living in Northumberland.

New Zealand

I'm in the UK.

USA :)

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