Is everyone a member of the PBC Foundation UK

[janethomas]

Hi I was wondering if everyone on here is a member of the PBC Foundation. The Foundation cares for those who suffer from PBC you will get a Bear Facts magazine 4 times a year with relevant info in and also members letters. We also have local meetings that as a member you can attend and be amongst other fellow sufferers. You will also have access to the great team at the Foundation. Also get up to date info about PBC.

[Hidden]

Hi

Yes I am and went to one of their seminars in London last year with my husband, who found it very useful, although he came away thinking he had more of the symptoms than I did.

L

[Hidden]

Yes I am. I became a member 6mths after diagnose.

I am in Lancashire and apart from this site and the PBC Foundation (as well as having the odd snoop on British Liver Trust site) does seem that up North, Scotland and Newcastle in particular it is that more highlighted as I have noticed.

The most odd thing I find as we apparently live in the UK which also consists of Wales and Scotland (I'll omit Ireland) is that if you are classed as England you have to pay for the urso unless exempt. I've always thought the system regards prescriptions and health is a very odd one. If one is on thyroxine for eg or diabetic, the drugs are automatically free yet taking urso with PBC is different but that's another debate.

[janethomas Moderator]

Unfortunately us in England still have to pay for our prescription's. The only other suggestion I can make is ask your doctor to maybe put a 6 months supply rather than the 1 month or 3 months then that hopefully should help out with some of the cost.

[Hidden in reply to janethomas]

Thanks for the reply janethomas.

Well on the downside my GP refused point blank to prescribe me 6mths of urso, max is 3mths but it's not 3mths as it's 90 days actually. My GP was of the stance that 'we can't have patients just having medication for months on end without monitoring'.

On the upside I did make a stand for more than the original 1mths' supply that I was going to be given, siting that because I pay I don't deem it right just getting a mth., I'd be back and forth to the surgery all the time!

[Hidden]

Yes i am a member and I NEVER get the quarterly magazine sent to me only a couple when i first joined, I would very much appreciate them.

[EAJSWW]

Hi Linda,

If you are not getting the magazine, just ring up the head office and ask them to mkae sure you have not fallen off the list. Technology isnt infallible but you can get them, you can also get the magazine by email

[janethomas Moderator]

Hi Linda,

You need to also check to see if they have your correct address as loads of magazine get sent back due to people moving and not informing the office.

[janethomas Moderator]

I don't know if you are aware but if you are on a low income you can get a form H2 from the chemist to fill in and if you are accepted you will either get free prescriptions or cost towards it. Its worth a go at just filling it in as you never know.

[Hidden]

Hello Janet,

I ask and answer questions found on HealthUnlocked and I thought I was a member of the PBC foundation but I'm not sure. I wasn't asked to provide an address and I'm interested in receiving any publications and information from the PBC Foundation. I live in California (USA) and will cover the cost of postage if needed. As far as I know there is no PBC Foundation in the US, only the UK and Australia. Any information about the PBC Foundation would be appreciated as I have to educate myself about PBC. Thanks!

[janethomas Moderator]

Hi you will need to contact our office in Scotland UK on 0131 5566811 or you can send them an email [e-mail] Hope this helps

[Cristina_Romania]

Do check out the PBC Foundation website, do talk to them.. I am a member but from Romania and I can assure you even I , from far away, can say how competent and kind they are, so do not hesitate.

All the best and keep the faith and the good spirit.

[DonnaBoll Administrator in reply to Cristina_Romania]

thank you for your post....The PBC Foundation reaches out to some 15,000 patients in over 75 countries. We never want anyone to think these services are only for the US and UK.

[Tumbleweed41]

As far as I know, I am a member. (?) Don't know about the magazines, etc. because I just found this a couple of weeks ago, but getting something via email with a link would be really great. I live in the middle of the U.S. -:).

[DonnaBoll Administrator in reply to Tumbleweed41]

just to be sure go to pbcfoundation,org.uk They just posted a wonderful new website. If you belong to the Foundation, you should be getting a link to The Bear Facts. If you don't reach, out to them with this web address. Hello to another Midwesterner!

[zipitydoo]

The bear facts magazine can be sent via email so that would be a good option for the people abroad.

[DonnaBoll Administrator]

Thanks for posting this. The PBC Foundation, free to join, offers SO much information including sessions on self care, live sessions with PBC experts every week, events being held, and so many wonderful people who are always there for guidance as well as answering questions.

Again their 24 hour help line is 0131 556 6811 or email [e-mail]