Category Archives: Patient info

Numbers now registered on BUS

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We thought you might like to know some statistics about the numbers of people registered on the BUS site, as we now have 62 people registered as members.

Although the breakdown might not be a 100 percent accurate, we believe we have 33 people who are based in the UK, including, Northern Ireland and Scotland, 17 people in the USA, 3 people in Canada, 2 people in Denmark, 1 person from France, Norway and Portugal and Australia.

Interestingly we have no-one in Wales, but I think 4 or 5 from Scotland and 1 from Northern Ireland! Continue reading →

Inflammatory Eye Disease lecture

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Professor Stephen Foster and Professor William Ayliffe  – Lecture on Inflammatory Eye Diseases – 24 March at 6.00 p.m.

This is a reminder that Professor William Ayliffe (a uveitis specialist and a Gresham College Professor) is giving a talk on ‘Inflammatory Eye Diseases’ at 6.30 p.m. on Wednesday 24 March 2010 at the Museum of London, London Wall, London EC2Y 5HN. Continue reading →

The Importance of Patients in Research of Rare Diseases

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It seems very apt, when we have just finalised the date for our  first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases).  EURORDIS is the voice of ‘patients with rare diseases across Europe’.

The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.

Continue reading →

PRIVATE MEDICAL INSURANCE

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We have been receiving lots of enquiries about medical insurance and what it does or does not cover.  Many medical insurance plans are limited to ‘acute’ illnesses.  Do check your medical plan to see what it actually covers.

We all know that Birdshot is classed as a ‘chronic’ condition, and we know of people who have had difficulty getting their medication or repeat appointments and battery of test (OCTs, ERGs, fluorscein, DEXA, Fields, etc) covered on medical insurance that is limited to acute conditions or to a certain amount of money per condition.

If you are being seen privately, rather than of the NHS, it is really important to build up a good relationship with your consultant and have a dialogue about the sort of medical insurance you have.  If, for example, you are seeing your consultant for a flare-up, this may well be deemed an ‘acute’ episode, and your consultant needs to be saying this clearly on the medical claim form.

Your consultant should be well versed in knowing how to maximise your private health insurance – so do spend time talking to him/her.
Rea

Forthcoming Birdshot Patient Day

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“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.

NIHR logoThis 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

Beacons_RGB.jpg 300dpi (Web PC screen use)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

DRIVING WITH BIRDSHOT

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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

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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

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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 →