Members posts

Coming out at work

This post has been written by Adrian,  a member of the Birdshot Uveitis Society.

Dear All,

I thought I’d write a post about the Disability Discrimination Act 1995 (DDA),  sharing  my own experience at work.

To gain protection under the DDA you must normally have a disability.  It is for you to provide the evidence that establishes that you have a disability.

The effect of a disability is not always obvious in the workplace. There are a number of conditions that can amount to a disability but aren’t always recognised, such as fibromyalgia, depression, dyslexia, etc.

Someone is defined as having a disability (for the purposes of the DDA) if they have “a physical or mental impairment which has a substantial and long term adverse effect on her/his ability to carry out normal day-to-day activities.” › Continue reading

Wednesday, February 17th, 2010 Members posts, Our stories, Patient info 2 Comments

Battle to find Cellcept

Rea has just had another battle to get hold of cellcept. Usual story – all supplies used up. She finally got it from her very local, small pharmacist who is now trying to find further stocks for her and one other patient they have on cellcept. Rea is not alone. Annie’s pharmacist has experienced a recurrent problem getting hold of the pills, but he has, up to now, never let her down.

The difficulty seems to be that wholesalers use up their quota of cellcept quite quickly. Smaller pharmacists seem, in our experience, much more willing to order direct from Roche (the manufacturer of Cellcept), if the wholesalers have used up their supplies. Smaller pharmacists are, in our opinion, also able to build up a relationship with their customers and understand their illness, and the complications inherent in each type of medication their customers are using. As Rea said: ‘My local pharmacist spends a lot of time with me, working out when I am next likely to need medication, and trying to ensure that the medication will be readily available’.

If faced with a problem in getting hold of cellcept, BUS recommends that it is best to build up a relationship with a local pharmacist rather than rely on the larger chemists who don’t apparently understand the difficulties for people with Birdshot when they do not have access to their prescribed brand of immuno-suppressant.

One person we know was told by the “large chemist”, to just ask your GP to prescribe a different immuno-suppressant!

Annie always tries to make sure she has at least two weeks of pills left when she requests her repeat prescription to allow her pharmacist enough time to hunt down a supply.

Do others encounter this difficulty? Perhaps we need to draw the problem to the attention of Roche. What do you think?

Tuesday, January 26th, 2010 Members posts, News 15 Comments

Birdshot logo

This is the fabulous logo for Birdshot Uveitis Society that member David Bethell has designed for us. David who is a graphic artist has had birdshot since September 2006. It is absolutely fantastic to have a professional artist/graphic designer helping us with this and our other publicity material. In January David has kindly agreed to work on our letterhead, leaflets and poster designs for us to get into eye clinics, so watch out for them. You can see more of David’s work on his website at www.myspace.com/DavidJBethell.

Eye new 8 (corner)If others have skills that they’d like to offer BUS, we’d be delighted to hear about them! Please do get in touch via birdshot@live.co.uk.

Happy New Year to everyone who has registered on the birdshot website and thanks so much for all the support and the enthusiastic feedback that we are getting.

Friday, January 1st, 2010 Members posts, News No Comments

Cheap Glasses

I am not at all  sure we should be advertising supermarkets like Asda particularly as they will help put high street optometrists out of business but I recently read about  this price war  they started .  Could be useful if, because of your eye problems, you are going through a phase of having to change your glasses frequently, or if like me you have a habit of losing glasses.
The newspaper reported that the supermarket giant Asda has started a price war with high street opticians by launching an ‘all-round’ price for spectacles, regardless of the complexity of the prescription. They will cost £50 for standard frames and £70 for designer frames.

Sunday, November 1st, 2009 Members posts No Comments

Members Posts

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Tuesday, October 13th, 2009 Members posts 3 Comments