Archive for February, 2010
PRIVATE MEDICAL INSURANCE
Forthcoming Birdshot Patient Day
“The Birdshot Uveitis Society (Rea and Annie) met at Moorfields Eye Hospital in London, to progress the first Birdshot patients’ day, which we hope will become an annual occasion. The day will be open to all patients with Birdshot as well as healthcare professionals who treat this condition. Importantly we hope to bring together Birdshot sufferers, so they can tell their stories, network and learn from each other.
At this event, a range of experts on Birdshot: (Ophthalmologists, uveitis nurses and experts on related matters), will be available and will be providing the latest information on Birdshot. In the future this event will also be an opportunity for the experts to see whether they can take forward meaningful research on Birdshot, (depending on the number of Birdshot sufferers attending, and their/our willingness to participate in research of course).
Above is a picture of part of the team who will be helping to run the day. We have a provisional date for a Saturday in September 2010, we are hoping for 11 th September. As soon as we confirm and finalise the date, we will let you know. Space will be limited so please email us if you think you might like to come so we can let you have the date and the details as soon as they are finalised.
This year we have been very fortunate in securing funding with a Beacon Bursary from the UCL Public Engagements Unit and a grant from the NIHR
Biomedical Research Centre for Ophthalmology, at Moorfields Eye Hospital and the UCL Institute of Ophthalmology. This means that there will be no charge for the Patient Day because we want to ensure that as many of you who want to attend, can attend. In order to be sure of numbers, we are charging a reimbursable reservation fee of £20.00.
The programme and information about the day will be posted at www.birdshot.org.uk/patient-day.
We hope to see all of you there!”
Annie and Rea
Eye Clinic Poster
We will be trying to place our new A4 hospital poster in eye clinics where uveitis is treated, so people who have a diagnosis of Birdshot can contact us for information and support.
If you want to make sure that the eye clinic you attend displays the poster, we would be grateful if you could write to us at Birdshot@live.co.uk with the name and address of your clinic/eye hospital and the name of your consultant. We want to make sure we get the posters to the right person. Alternatively, if you would like to take the poster in yourself, write to us at Birdshot@live.co.uk and we will send you copies. There is also a version in yellow and black.
Please help us to spread the word.
Once again our thanks must go to David Bethell, (our logo designer) , who has designed this striking poster for us. We are very grateful for his valuable contribution in helping to get BUS and Birdshot better known.
DRIVING WITH BIRDSHOT
For those of you with Birdshot, who want to remain driving, you do need to be sure that your eyesight is good enough to keep you and others safe. The usual test that your consultant will perform to ensure this is the Snellen chart (reading black letters on a white chart) – with glasses if you wear them – and a field test which will check your central and peripheral vision as well as your reaction time. › Continue reading
Prescription Pre-payment
If you have been recently diagnosed with Birdshot you may not realise immediately that you should apply for a pre-payment certificate for your prescriptions. It will save you money in the long run. The current cost is £104.00 for a 12-month PPC. You don’t have to pay for it in one go, I pay a monthly £8.70 for mine, by direct debit.
If prescription charges go up, you are covered for the rest of the year so you will not be affected immediately by price increases.
This link takes you to the NHS website to the page which has all the information about how to obtain the card.
Annie
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
Alendronic Acid – Take a break!
Take a break to prevent a break!
“Don’t use it for more than five years!”
We recently came across this article about the long term effects of Alendronic acid and thought we should bring it to your attention. The long and the short of it is that it is not a good idea to use the drug for periods of longer than 5 years, as it has the effect of making your bones go brittle and actually causing breaks.
Naturopath, Jacob Schor, ND, FABNO, writes:
“The drugs that have been used with apparent success to treat osteoporosis may now have a problem. Alendronate may weaken bone and lead to increased fracture risk. › Continue reading
“Making Contact” – Brenda Snow
There’s an interesting article written in this month’s “Pharmaceutical Marketing Europe” magazine entitled “Make Contact” by Brenda Snow who suffers from MS.
It states that “taking the time to listen to sufferers’ stories helps patients, doctors and industry relate and benefit.”
There’s a lot that will ring true for people with birdshot – below I post a part of her introduction:-
“Life isn’t always fair, it’s a lesson we all have to learn eventually. It’s how we deal with those bouts of unfairness that help define us as individuals. Sometimes, dealing with adversity can actually have positive outcomes.
The pharmaceutical company/patient relationship is changing and should continue to change and develop, moving forward.
The pharmaceutical company/patient relationship has traditionally been: patient gets ill; patient visits doctor; doctor talks to patient; doctor prescribes medication for patient; patient receives medication from pharmacist, and hopefully patient reads patient information leaflet. In essence there has not been any kind of real relationship or genuine connection.
My first suggestion is that pharmaceutical companies need to listen to patients in order to focus more on what matters to the patient population. Many pharmaceutical companies are doing this already. Those that are not should at least be cognizant of what is being said about them, specifically online. This is a plea for pharmaceutical companies to connect with the patient communities they serve.” Follow this link to read the whole article.
I called Brenda Snow because I was interested to see if she had any ideas about what could be done to ease the supply of cellcept, or change Roche’s decision in relation to Zenapax. She was very friendly and helpful.
She suggested that if the supply of Cellcept was so difficult, we could perhaps ask our doctors to consider prescribing a very similar drug called Myfortic, which apparently has an enteric coating on it which makes it less harsh on the stomach, but it uses similar ingredients to cellcept as is often used successfully for transplant patients.
As far as Zenapax was concerned she said she said she would try to see what could be done, including find out if there are any generic versions of the drug.
We’ll let you know what we find out. Annie