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