BUS moves to the next level

We are very excited to announce that BUS is growing and developing.

Until August 2011, BUS was part of the Uveitis Information Group (UIG), a charity working for people with all forms of uveitis.  However, this arrangement became difficult to maintain because of rapid changes in the NHS (particularly in Scotland where uveitis services have developed at a faster pace), and changes in the charity sector.

UIG AND THE NEW SUN

Because of this, UIG will focus on Scotland and will evolve into becoming the Scottish Uveitis Network (SUN) – an organisation made up of NHS staff and patients.  Phil Hibbert will be leading these developments in relation to patient support in Scotland and SUN will work with all forms of uveitis.

BUS DEVELOPMENTS

These developments give BUS the opportunity to re-focus and establish itself as a charity in its own right.  There are a number of steps we will need to take but we have already fulfilled the first one of becoming a limited company and Birdshot charity. The formal registration should be complete by the end of the year.

BUS will work with all Birdshot across the UK, and expand its international links and expertise. It will continue to work in partnership with sister Birdshot organisations in France and the US.

We have been so very lucky to get help from two people who are involved with Birdshot and one person who is involved with PIC (Punctate Inner Choroidopathy – another rare white dot syndrome).

Peter Edney (far left), our treasurer,  is a practising accountant, and is helping us become a registered company/charity.   His wife, Janie, has Birdshot.

John Hall (left) has Birdshot and is a very successful business man.  We are really lucky to benefit from his business knowledge and experience.   He is helping us to plan for the future of BUS.

David Bethell is also part of  the BUS team.  As many of you may know David is our graphic artist and has been involved with BUS virtually from the start.  He designed our fabulous logo and continues to come up with imaginative ideas for our posters and Birdshot Day leaflets.  David also has Birdshot.

Dave Stead has PIC and runs a specialist PIC information and support website at: http://www.pic-world.net/.   (PIC is a rare form of auto-immune posterior uveitis, which leads to punched out white spots at the back of the eye).   Whilst still retaining its own identity, the PIC Society will be part of the new BUS charity.  This will mean that in addition to providing specialist support for people with Birdshot, Dave will provide specialist information and support  for people with PIC under the BUS umbrella.

Olivia’s Vision

In addition, a new charity for people with uveitis in England, Ireland and Wales has been set up by a mother of a child with uveitis. This new charity is called Olivia’s Vision and can be found at www.oliviasvision.org

NATIONAL ORGANISATIONS WORKING WITH UVEITIS

The three new organisations working with uveitis in the UK (BUS, Olivia’s Vision, SUN) will liaise to make sure that people are directed to the appropriate place for help.

THE FUTURE

At BUS, we have already been successful in raising the profile of Birdshot, attracting members with Birdshot and professionals working with Birdshot, and setting up a research network. The new BUS will give us greater strength to continue these activities.  We also hope to develop a similar response for people with PIC.

We will keep you informed of any developments, but please be assured that for all of you who are members of BUS, whether you have Birdshot, are a family member or a professional working with Birdshot, the only changes you should notice is that we are better organised and have even more impact!

The First Birdshot Day goes Viral!

Moorfields Hospital and UCL (University College London) Institute of Ophthalmology run the Biomedical Research Centre for Ophthalmology (BRC). This centre comes under the National Institute for Health Research (NIHR), so is very influential and is part of the NHS system.

The aim of the BRC (a happy coincidence that the acronym suits Birdshot so well) is to be the leading website providing information about new diagostic methods and therapies relating to the eyes,  whether they are developed by themselves, or in partnership with other research centres, private companies or charities.

It is therefore most encouraging to see that the 2010 Birdshot Day is featured in great detail on a number of the site’s pages. Let’s hope it bodes well for future research into our particularly rare and hard to treat eye disease. The link below takes you to the first page but there are four other pages: Art Project, Outcomes and Reflections. (See the red links in the middle of the page that this link takes you to).

http://www.brcophthalmology.org/Events/BirdshotDay2010.aspx

Does the NHS serve us well?  Who attends Croydon Hospital?

The Guardian of 22nd July had an interesting article, authored by Polly Toynbee, on the state of our NHS. She provides a specific example, based on cataract surgery in Suffolk, of how criteria for treatment are tightening, and delays are being built into the system.  The concern is that this way of ‘rationing’ healthcare is by no means confined to Suffolk.

Some worrying quotes from the article:

“To qualify for an operation patients need to be so poor-sighted that they can only see at six meters what ordinary people can see at 18 meters: previously people qualified if they could see at six meters what others see at 10. This is such a big difference that the optometrist revealing the new order says it would have excluded 90% of those he had sent for cataract removal over recent months.”

“Growing use of referral management centres means GPs’ letters to consultants are sent via a third outfit where they are scrutinised, often not by doctors but by nurses, physiotherapists or administrators, and returned if they don’t meet ever tougher criteria. That keeps patients off published waiting lists.     The King’s Fund has done research that shows no evidence that  this expensive extra tier of bureaucracy saves any money.”

This really is a sorry state of affairs, particularly for people like us who have rare and fluctuating conditions, and need expert help to retain our visual acuity. For the whole article follow the link below.

http://www.guardian.co.uk/commentisfree/2011/jul/22/nhs-still-at-risk?INTCMP=SRCH

But, what about the NHS services we with Birdshot use?  Have we noticed a deterioration?

We at BUS are interested in receiving feed back from anyone who is experiencing problems in getting NHS services, or getting appointments, or getting appropriate medication, or getting appropriate monitoring and testing.  Please email us with your experiences.

We have a particular interest in people attending the Croydon University Hospital Eye clinic (it used to be called Mayday).  Over the last year or so we (Annie and Rea) have noticed a worrying deterioration in services from the eye clinic there.  It is particularly pertinent to us, as one of the world experts on Birdshot practices from Croydon.  We really don’t want say too much about our own experiences at this stage, as we are looking for feed-back from any of you who attend Croydon.

The reason for needing your feed-back is that we have already been to see the senior management at Croydon, to explain our concerns about the services.  This has led to an agreement that we will provide on-going feed-back from any of our members who attend Croydon and we will keep a check on whether things are improving or not.   If they are not, we plan to take further action, so your help is really, really needed.

We are very happy to do the same for any other hospital where there are real concerns (we need evidence to do this – your experiences are very powerful evidence) so get those emails in to us – we need to make sure that EVERYONE with Birdshot gets a proper NHS service!!!

 

BUS website – how effective is it?

Using Google Analytics we took a look at the monthly figures showing the number of unique visitors (i.e. the people who log on who have never logged on before),  how many visits, the average length of visit and from what countries.

The map to the left shows all the places in the UK where people have visited from October 2009 (when we launched the website) until now (end of June 2011).    On average we are now  getting 700 visits a month from the UK.  Since October 2009 there have been 11,996 visits from here.

Below are a couple of charts that show how the traffic has increased over the period the website has been published.  The number of countries now visiting the site is over 50. Our main traffic comes from the UK, with the USA coming in second.  We have also analysed the other countries from which we receive visits – it is no surprise that we tend to have the highest number of visits from those countries where there is a large european or caucasian population as the HLA A29 antigen tends to predominate in this population.  All in all, we feel that the number of visits we get, combined with our growing membership base, and the number of requests we get for information shows that BUS is performing a really useful function.

 

We thought it might be interesting to show some of the other countries where people visit the BUS website (see below).    During this period, there have been 3,048 visits from the USA and 373 visits from Canada.   There are also maps and figures for  France, Germany, India, Australia, Belgium and Netherlands.

 

 

In Ireland the number of visits since the site was established is 111.

 

 

United States of America  3,193 visits since October 2009

In Canada 399 visits

In New Zealand there have been 89 Visits

 

 

 

 

In  Austalia 166 visits

In France there have been 190 visits.

 

 

 

 

 

 

 

In Belgium there have been 126 visits

 

 

 

 

 

 

 

In Holland 122 visits

 

 

 

 

 

 

In Sweden 88 Visits.

Nurse Claudia represents Birdshot

Claudia Wilson-Barrett, Link Nurse at Moorfields Eye Hospital presented a poster about the Birdshot Day at the recent Vision 2020  conference.

Claudia reported:

“Attending the Vision 2020 UK 2011 conference was a good experience for me. Preparing the poster was a steep learning curve as I had little power point experience and I had never had the opportunity to design this sort of poster before.

The poster explained the way the Birdshot Day brought together patients, their families and professionals giving everyone the opportunity to learn from each other and exchange ideas. It was  a pleasure sharing the information on the poster with patients, medical professionals and individuals from the NGO’s that visited the conference.

It was good to know that there are others that share my vision and practice:  putting the patient at the centre of our care. It is most important that the patients are given the information needed to make an informed decision about their management and care.”

A detailed evaluation of the day that was  carried out after six months revealed that:

  • 97% of patients responding at six months said that they would come again next year
  • 100% of professionals would recommend this day to Birdshot patients
  • 96% of professionals would recommend this day to other health professionals
  • 88% of health professionals would come again next year

We are very grateful to Claudia for her support. If you are a patient at Moorfields, be sure to get to know Claudia and the other nurses there.  They are really useful, inspirational and helpful people to know – they are there to provide you with information about your treatment and they have vast knowledge and are truly patient focused.

 

 

Birdshot publicity

Two posters are being displayed at the Royal College of Ophthalmologists Congress next week, where we hope they will draw attention to Birdshot.  Nik Koutramanos’s poster was displayed at the ARVO (American Association for Research in Vision Opthalmology) conference in April 2011 and is now also being displayed at the RCO congress.  It tells the story of the detailed  Evaluation of the Birdshot Day 2010.  Nik is a trainee Ophthalmologist who was actively involved in the day and was  responsible for writing and designing the poster in collaboration with Birdshot team members:- Rea Mattocks, Annie Folkard, Claudia Wilson- Barrett (specialist nurse) , Catey Bunce (statistician), Carlos Pavesio (consultant ophthalmologist) , Narciss Okhravi (consultant ophthalmologist).

Here is Nik’s comment about presenting the poster at ARVO.

“Our poster was very popular in ARVO.  More people than I expected stopped and read it.   It was helpful that we were surrounded by dry scientific posters.  Some had nice things to say, some took a photo of it.  People were impressed that we were able to collect so much information from just one day! We had another 3 birdshot posters around us, all of which were scientific/research based. To my amazement, at some point during the day that I was presenting, a small brown bird, which had somehow strangely managed to find its way into this big windowless airconditioned building, flew over many of the posters, in big circles, and went and sat on one of the birdshot posters stands for a few minutes. I thought that was fairly strange and if I was to be a believer in omens, this could only be a good one :)”

A bird’s eye view from the patients perspective shows  Patients at the heart of Medical Education.   The poster was designed by 4th year UCL medical student  Louise Ramskold,  in conjunction with Emily Kirkby, Ruthiran Kugathasan, Nik Koutroumanos, Narciss Okhravi.

All this publicity raises the profile of Birdshot and BUS within the ophthalmological and eye worlds.

We’d like to thank all those involved for their hard work and helping to raise awareness and get publicity for Birdshot amongst professional.

 

 

 

 

Article about Birdshot in Optometry Today

Below is a link to an article which appeared in the April 2011 edition of Optometry Today. ” Birdshot Case Study“.    It was written for us by Emily Kirkby, a student who was involved in the Birdshot Day in September 2010, with help from Rea, her consultant Nigel Hall, Narciss Okhravi and other members of the Birdshot team.

As  most of us with a Birdshot diagnosis know, Birdshot Chorioretinopathy is difficult to diagnose, particularly in the early stages before the tell tale lesions appear.  A  case study like this that appears in a widely read optometry magazine should help to make optometrists more aware about this rare autoimmune eye condition.  Opticians are the people we often first turn to when we have eye problems.  With Birdshot, it is really important to get speedy treatment and if the optometrist or optician is informed about it, we stand a chance of this happening.

Please let your optometrist know about this article – help spread the word.

How can we get hold of new medicines?

Many of us with Birdshot will have experienced the difficulties of getting hold of medication that controls our Birdshot, if we don’t respond to the ‘usual’ medication regime of steroids and mycophenolate mofetil.  For many of us, we have had to get our consultants and GPs to apply to the relevant health agency (usually the Primary Care Trust that covers our area) for a ‘special circumstances hearing’.  Often, this takes months, only to be told, at the end of the process, that the PCT will not approve the medication regime we have applied for.

Well, help is at hand!  Not only is a ‘rare disease strategy’ being implemented across the UK in 2013, but also, the Genetic Alliance UK is currently looking at how we, with rare diseases, should get access to medications (none of which have been specifically licensed for our disease) and who should decide whether they are safe or not.

You can help.

The Genetic Alliance UK is now launching a recruitment campaign for an innovative and exciting research project about new medicines.

They want your views and your participation – It’s all about getting your views heard.  Below, we include a few more details about the project and how you can get involved.

Anyone interested in participating should visit the Genetic Alliance website for full information but here is a short summary:

New medicines: How should we weigh the risks and benefits? And who should do so?

Genetic Alliance are looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. They are looking for up to 16 individuals to form a diverse jury that will deliberate a very important issue – the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too!

There is further information available about the project and how people can get involved on the Genetic Alliance UK website, including a short explanatory video clip and an online questionnaire for people to register their interest.

The aim is to generate as much awareness and interest in the project as possible! To  find out more please contact Project Officer, Amy Simpson (asimpson@glam.ac.uk) or Marketing Officer, Julian Walker (Julian@geneticalliance.org.uk).

 

Rea and Annie

 

 

 

Important please read

Dear Members

We believe that there was a problem with our weekly newsletter last week. It would seem to have got caught up in new spam filters before it ever reached you.  Obviously we are not sure how widespread this problem was, but we thought we should email you to let you know about the potential issue.

We are told that if you add this email address to your address book, it may help prevent this from happening.  If that does not work and you still do not get the news updates,  and so that you do not miss out on any important news, you can always subscribe to the site via the RSS feed button that you find in the top right hand corner of screen.  Simply save the feed to your internet  favourites bar, as described in our post last week, and then check it from time to time to see what is new on the site.

Also please note that if you do not wish to receive our weekly update news from us, you have the option of signing into the website and unsubscribing from the news letter when you are logged in.

Yours

REA AND ANNIE

Good outcome from steroid implants

An American study was published earlier this year, looking at the outcomes for Birdshot patients who had been on steroid implants (the longer name for these steroid implants is corticosteroid intraocular devices). 22 Birdshot patients were involved in the study which looked retrospectively (over a 3 year period) at the outcomes.

The outcomes were extremely positive, and showed that the steroid implants had significantly improved vision, controlled inflammation and in the majority of cases stopped the need for other medications. As always, there are some down sides – in the case of steroid implants the main side effects were a high incidence of the progression of cataracts and a high incidence of intraocular pressure (called glaucoma).

If you want to read the full study, go to the American Journal of Ophthalmology.

We at BUS, are really excited that there seems to be a growing number of suitable alternatives for people who are not responding well to oral steroids and various different types of immunosuppressants, or who cannot tolerate these medication regimes.

The importance of a published study is that it provides evidence for patients and consultants who might be struggling to acquire steroid implants from their primary care trusts or health organisation, or who are looking for alternatives to oral steroids and immunosuppression.

For those of you who attended the Birdshot Day in September 2010, you will remember that steroid implants were discussed at some length on the Day. There was one attendee who had these implants and was extremely passionate about them.

If you want to hear more about steroid implants for the Birdshot Day, please go to our clip on retisert implants at:

Since the Birdshot Day, we have heard from one attendee who says that the Day changes her life and equipped her with enough information to be confident in moving to steroid implants. She reports that she can now see clearly for the first time for many years without the aid of immunosuppressive treatment. We also know of another person who has been offered them on a special trial and a third person who is discussing this option with their specialist.

We are so pleased at the more rapid progress of alternative treatments and we are delighted that the Birdshot Day has equipped attendees with the means to work in partnership with their consultants to explore all possible options. We are even more delighted to see that so many more consultants are now listening to their patients and there is a two way dialogue and a real exploration of all options available. Let’s hope that we can also make some headway in finding out the reason we get Birdshot in the first place!