Birdshot T Shirts, Hats, Badges and Bags for sale!

Because of popular demand, the Birdshot Uveitis Society is pleased to be offering the following unique Birdshot promotional items for sale.  Any profit made will be used to support the work of the Birdshot Uveitis Society.

T Shirt

Good quality cotton, available in small, medium, large, X large and XX large.  £10.00 plus postage and packing. Please click on the tab below to select the size you want to purchase, then add to cart. T shirt modelled by BUS member, Joanne at the Birdshot Day No 3.
Birdshot Day 3 Nov 15 052


Size



Black Peaked Cap

These are printed with Birdshot logo in reverse.  They are available in one size,  £5.00 plus postage and packing.  (Hat, modelled below by BUS member,  Robert.)

11221824_10153095734236331_2588353459153584896_n(1) (1)




Cotton Shopping Bag

One size bag measuring 14″ x 16″ with long handles – ideal to have handy for impulse shopping.  £3.00,  plus postage and packing. (Some may remember these bags as we used them at the 2nd Birdshot Day.)
Cotton Shopping bag




Small metal badges Size: 1.5″

£1.00 each, with no additional postage charge.
BUS Badge




 POSTAGE for UK and Europe

There is an additional charge for postage and packing depending on the value of items ordered.

£2.00 for  items up to £10.00 in value

£4.00 for items up to £25.00 in value

£6.00 for items up to £50.00 in value

Over £50.00 in value, please contact us for an accurate postage estimate.

For members in USA or Canada or Australia, it is necessary to add a postage premium to help cover costs.

Please select the number of items you have ordered in order to calculate the extra premium required for shipping goods.  If you are ordering more than three items, please contact BUS to obtain a quotation for an accurate postage cost.


Number of items ordered



Any queries, please contact Annie at info@birdshot.org.uk

Survey on potential Birdshot treatments – please help

SURVEY ON PERSONAL EXPERIENCES OF BEING TREATED WITH OZURDEX (dexamethasone) IMPLANT, SIROLIMUS INTRAVITREAL INJECTION OR HUMIRA (adalimumab) INJECTION

BUS has been asked to attend an appraisal meeting of NICE (National Institute for Health and Care Excellence) which will consider making three treatments available to the NHS for treating non-infectious uveitis. The meeting is expected to take place in 2016.

We would really appreciate your help in telling us your experiences if you have had any of the following treatments and we would particularly value hearing your feedback on what you consider to be the advantages and what you think are the disadvantages of these relatively new treatments in comparision to other treatments that you have had for your birdshot:

Ozurdex (dexamethasone) implant
Sirolimus intravitreal injection
Humira (adalimumab) injection

You will find the survey in a word document below.

BUS questionnaire about your experience with Ozurdex, Sirolimus or Humira

It does not matter whereabouts in the world you live: your comments will help BUS to get across to NICE the actual patient experience of having these treatments.

All your feedback and comments will be anonymised.

Thank you in advance for helping UK birdshotters!

Please send your responses by email: info@birdshot.org.uk

or by post to BUS, PO Box 64996, London SW20 2BT

New Birdshot posters

Below are links to two posters displayed at the recent Birdshot day.

ERG poster

The ERG poster shows a novel way of displaying ERG results from clinic appointment to clinic appointment, so at a glance you can tell if the situation has improved or if treatment is not working simply by looking at the direction of the graph.

100,000 Genomes Poster

The 100,000 Genomes poster  tells you more about a UK government project.    If we wanted we could apply to have Birdshot included in this analysis.

The project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.  The aim is to create a new genomic medicine service for the NHS – transforming the way people are cared for. Patients may be offered a diagnosis where there wasn’t one before. In time, there is the potential of new and more effective treatments. Genomics England, a company wholly owned and funded by the Department of Health, was set up to deliver this flagship project which will sequence 100,000 whole genomes from NHS patients by 2017.  Its four main aims are; to create an ethical and transparent programme based on consent; to bring benefit to patients and set up a genomic medicine service for the NHS; to enable new scientific discovery and medical insights; and to kick start the development of a UK genomics industry.   Do members think that this is something that they would like to be involved in?

MP Fabian Hamilton asks should Humira be prescribed for sight threatening uveitis?

The subject of access to Humira and Infliximab was brought to the political arena this week, Wednesday 9th December 2015. Leeds North East MP Fabian Hamilton, who is campaigning on behalf of uveitis sufferer Samara Ullmann tabled a debate which asked the Government’s Life Sciences Minister George Freeman to consider asking the NHS to prescribe Humira.

One of the country’s leading eye specialists at Calderdale Royal hospital in Halifax, Mr Teifi James, has recommended it for Samara – who is already blind in her left eye – however so far NHS England decided not to allow its prescription.

This same issues applies to a few Birdshot Uveitis Society members who desperately need to find a drug they can tolerate and that works to save their sight. NHS England is currently denying them access to Humira and Infliximab.

The below link takes you to the debate and you can listen to the relevant portion of the debate debate if  you select the option on the right side ” Prescription of anti-TNF’s”

http://goo.gl/rtWYbZ

 

Birdshot research developments

BUS is delighted to distribute the first Birdshot Research network newsletter which brings up-to-date news of where we have got with our exciting UK Birdshot database and biobank projects.

To find out more about the timescale please find your copy of Birdshot Research News 1 here.

Sue Southworth, our Birdshot research Nurse who is based at Birmingham was appointed in July.  She has been extremely busy working on the ethics for this complex undertaking,  and is working hard towards a timetable of launching the Birdshot database and biobank in April 2016.

Any patient who wants their eye clinic to be involved in this should feel free to tell their consultant of their wishes, and their consultant should in turn be in touch with Sue Southworth to tell her of their interest.     Alternatively you can tell BUS of your interest by filling in the attached expression of interest form and sending it to BUS.

You will  find Sue’s contact details are on the newsletter so print off a copy and take it to your next clinic appointment and give it to your consultant so that you can also be involved.

Currently we have 5 centres who have said they would like to be involved and unfortunately for the time being, because of logistics and ethics,  this project only applies to people with Birdshot Uveitis in England and Wales.

We look forward to hearing from you!

Annie

for team Birdshot

 

 

 

Birdshot research at Royal Victorian Eye and Ear Hospital!

Recently we heard from Gill who is a Birdshotter based in South Eastern Australia.   She told us about some research that is taking place at Royal Victorian Eye and Ear Hospital in Melborne who have started a combined study in Birdshot with Melbourne University.

Gill said: “They were very interested when I said that there may be other birdshot patients here in Victoria and beyond. If you are in Australia and  interested in taking part (a simple blood test so far) could you let me know via Annie at Birdshot Uveitis Society info@birdshot.org.uk.”

BUS has subsequently been in touch with the researchers involved in the study and heard back from Alex Hewitt who said:-

We are hoping to dissect the genetic susceptibility to Birdshot and it would be great to broaden this to people in the UK & US. Hopefully we can get to the bottom of what causes Birdshot”
The work in Australia is really being led by Professors Matt Brown and Lyndell Lim.

BUS thinks that the prospect of international collaboration is very encouraging for the whole community and would welcome further discussions on how we can collaborate.

If you are based in Australia particularly in the south eastern area and have a Birdshot diagnosis, or know people who do and want to be involved, please do let us know so that we can pass on your details to the study.

 

Infliximab and Humira

BUS met with NHS England in September along with a number of other eye charities and eye specialists, to try and find out what was going on and to lobby for this treatment to be available for severe refractory forms of uveitis where other treatments have failed.  We were told at this meeting that NHS England would be reviewing the situation once they had received the published results of the recent trials on children and adults.  In the meantime:-

  • Everybody already being prescribed Humira or Infliximab, will continue to have access to these drugs.
  • The current policy does NOT apply if the uveitis patient has a secondary disease eg if a child or adult is diagnosed with JRA and uveitis, they can still be prescribed Humira or Infliximab.
  • The policy only applies to uveitis patients in England.
  • The Individual Funding Request (IFR) route is still available for patients who are significantly different from other patients with uveitis. Blinding disease alone will not make a patient eligible for an IFR. In reality this means a request for individual funding will most likely be unsuccessful.
  • The clinically critically urgent (CCU) process remains open, but the criteria is usually based on having a life threatening disease, and so again, this process is unlikely to be successful for now.

We recently heard unofficially that:
The policy for the treatment of severe refractory uveitis for children has been revised and this was resubmitted last week for an in year policy development. Publication of the adult VISUAL trial data following external peer review is a key quality assurance for NHS England, and we will wait for these results to be published to revise the adult policy according to the study entry criteria and outcomes. We hope this information will be available in early 2016 and we will then be able to submit the revised adult policy as part of the NHSE in year policy development process.”

This means that for the time being,  as far as people with  Birdshot Uveitis are concerned,  there is little chance of being prescribed these drugs for their Birdshot, unless they have some other secondary condition such as rheumatoid arthritis or Crohn’s disease where the drugs are already approved.  Once the results of the VISUAL study on adults are published in a peer reviewed journal,  NHS England will be asked to reconsider.  I am afraid for the time being it is watch this space….

Sight village in London 3rd-4th November

For those in the London UK area: Sight Village returns to London this November.  This is the publicity blurb that we recieved recently which you can down load and print off.

The popular two day event takes place at Kensington Town Hall on 3rd & 4Th November. Doors open at 10am until 3pm both days and entry is free!

Sight Village is the UK’s leading exhibition for blind and partially sighted people and for those experiencing age related sight problems. It brings together leading providers of products and services all under one roof.

We recommend that all visitors pre-register to attend the event by following the link below. If you are unable to do this, please call a member of the team on 0121 428 5041 and we will be happy to complete this for you.

Please pass on the information about the event to service users and anyone who may benefit from visiting the event.