3rd Birdshot Day Saturday 14th November 2015

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We are pleased to announce details of the 3rd BUS Birdshot Uveitis Day on Saturday 14th November 2015.  We will be holding it at the Grange City Hotel, 8 – 14 Coopers Row, London EC3N 2BQ, close to Tower Hill tube station and Fenchurch BR station.  The educational day is intended for people with Birdshot Uveitis, their family members and health professionals who treat people with Birdshot or research Birdshot, or want to learn more about the condition.  We welcome both old and new friends.    A two course buffet lunch, tea and coffee will be provided and the day will be divided into five main sessions which are briefly described below.

SESSION 1Chaired by Professor Andrew Dick

Birdshot Uveitis and where we are now: Medication and keeping yourself well – an interactive panel presentation including a doctor, pharmacist, specialist nurse and chairman with lots of opportunity to ask questions from the floor for example, information about trough levels and blood tests; information about skin problems,  drug interactions; managing stress and how to keep well on treatment.

SESSION 2Chaired by Professor Phil Murray

The importance of partnership and collaboration in research: NBRN and BUS partnership; Fight for Sight and BUS partnership: update on some of the research projects supported to date and the future,  with Q & A’s. Speakers will include Julian Jackson, ( Fight for Sight) and Birdshot researchers: Alastair Denniston, Graham Wallace, Omar Mahroo, Professor Glen Jeffery.

SESSION 3

1) Reducing Stress – an interactive session where Mark Westmoquette shows how mindfulness could help reduce stress including some simple introductory exercises
2) Living with Birdshot – a led workshop where patients share their experiences

SESSION 4Chaired by Professor Miles Stanford

National Birdshot Research Network,  future developments and new research in the pipeline,with short presentations from leading researchers involved in Birdshot related research in both the UK and Holland.   The speakers include consultants and specialist researchers such as: Carlos Pavesio (Moorfields Eye Hospital), Jonas Kuiper, (Department of Ophthalmology and Laboratory of Translational Immmunology, Utrecht)  Pearse Keane (Moorfields Eye Hospital), Andrew Dick and Richard Lee (Bristol University/Bristol Eye Hospital).

SESSION 5

Question Time –  The Birdshot panel of experts answer your questions, with: Andrew Dick, Miles Stanford, Phil Murray, Carlos Pavesio, Pearse Keane, Alastair Denniston, Jonas Kuiper, Richard Lee, John Hall, Annie Folkard and others.

As well as the talks, on the day you will be able to network and socialise with our ‘Birdshot Community’ – made up of professionals, people with Birdshot and family members.  You will be able to:

  • Meet experts in the field of Birdshot
  • Meet other patients with a Birdshot diagnosis
  • Ask questions about Birdshot
  • Ask questions about medication
  • Find out about new treatments and research

We will have a range of exhibitors there  including: Fight for Sight, RNIB, Macular Disease Society, Guide Dogs for the Blind, and Optima Low Vision and others.

Please register on line to reserve your place, or print off Birdshot Day Registration Form and send it to BUS, PO Box 64996, London SW20 2BL, or return it by email to info @ birdshot. org. uk.
This event is being organised by BUS  and members of the National Birdshot Research Network.  We are  particularly grateful to Professor Andrew Dick and Karen Bonstein for their help with developing the programme.  We are extremely fortunate to  have the continued support of a dedicated group of clinicians and researchers who form the heart of the National Birdshot Research Network.

BUS very much look forward to meeting you all on Saturday 14th November 2015.

Annie

for Team Birdshot

Email: info @ birdshot. org.uk

Book your places now!

As before, the conference, including lunch, is free,  but we do require a £20 refundable registration deposit (plus £1 non-refundable administration fee to pay for postage and Paypal fees) – your registration fee can be returned when you attend the Day, but if you choose to donate your registration fee to help BUS develop the next Birdshot Day, we very warmly welcome this. You can pay your registration fee by using the button below (debit and credit card & PayPal), or by sending a cheque by post to BUS, PO Box 64996, London SW20 2BL.


Online

Registration



If you are claiming benefits or on a pension we will waive the deposit as we do not want to prevent people attending due to financial constraints.

Accommodation

If you want overnight accommodation the Grange City Hotel has offered us a concessionary rate.  Please note to obtain the special rate, your hotel booking must be made at least 1 months in advance of the day, as nearer to the date prices will unfortunately go up.  Information about this, including the rates can be found at the following link: http://www.grangehotels.com/business/birdshot-uveitis-society/

We are extremely grateful to M3 who have sponsored the printing and distribution costs of the publicity poster.

 

 

 

Specialist commissioning process update

Birdshot Uveitis Society members based in England may be aware we have been awaiting the results of the Specialist Commissioning process which has been going on over the last year. This is the process whereby government will decide which drugs are available for different rare conditions depending on the evidence that is available which shows that the drugs are effective.

We had been led to believe that the outcomes would be announced in December.  The recent news is that the decision making process had been delayed as a result of the threat of legal action by a patient group, (nothing to do with eyes or ophthalmology, but some other rare condition), who felt that the process was unfair.

In the meantime we’d be interested to hear from any patients with Birdshot Uveitis in the UK who have been turned down for treatment with either Humira or Infliximab and whose consultants are struggling to control the inflammation in their eyes with the more usual treatments. It would be interesting to get some idea about the numbers involved and to see what can be done to help.

Please do get in touch with BUS info@birdshot.org.uk and let us know if you have been experiencing this difficulty.

Birdshot Day Poster – Saturday 14th November 2015

Here is the poster to advertise our forthcoming No 3 Birdshot Day on Saturday 14th November 2015.   The poster has been designed by  David Bethell, one of our trustees and directors, who is also a graphic designer.  As before, David has given his time for free.  M3 Global who are the healthcare marketing company that we helped earlier last year have sponsored the printing costs.  Thank you so much to you both M3 Global and David for their help with this.

If you would like to make sure the poster is put up in the hospital where you are treated, please let us know and we will send you a copy, so you can arrange this for us.  Publicity throughout the UK is most important, as we would like this to be the biggest gathering of people with Birdshot and people interested in the eye condition that has ever been held!

Details of the day and the programme will follow on the BUS website soon, with a link so that you can book your ticket to attend.    We can also email or post the information direct to.  Please get in touch with ub by email to info@birdshot.org.uk to indicate your interest in coming to the day.

The programme is well develped and we will already have some exciting speakers and activities organised. Please put the date in your diary!

Birdshot Poster Pompidou Transport MBP A4B

Urgent your help is needed – Specialist Commissioning Debate

MPs are debating Specialist Commission this Thursday 15th January.  Please write to your MPs enlisting their support and ensuring that they attend this debate.

This is relevant to you because in the future Birdshot will come under specialised Commisioning  and we need to make sure we get good services. At the moment, the government is trying to squeeze funding away from specialised commissioning and you may already be aware that they are planning not to fund anti TNFs  (drugs like Humira and Infliximab) for people like us.

Below is a draft of a letter that you can alter as you wish to send to your MP.

Specialist commissioning letter draft

and a briefing paper which you might also like to send.

SHCA Briefing Materials for Westminster Hall debate on national commissioning of NHS specialised services – Jan 2015 specialist commissioning letter

Next PINGU meeting in Birmingham

The next meeting of the PINGU (Patient involvement group for uveitis) is planned for 30th September 2014 at 6:30 pm in the CRF on ward D46.

This is a local support group for people with all types of uveitis that the Birmingham and Midland Eye Centre run.  If you want to obtain more information about uveitis and its treatment, come along and meet others with this type of eye problem as well as some of the eye clinic staff.

Please do let Sue Southworth know if you are planning to attend.

 

Sue Southworth, Research Nurse/ Co-ordinator

Birmingham and Midland Eye Centre

Tel +44(0)121 507 6844