Birdshot informal London meeting

Dear Birdshot Friends

Meeting to discuss the agenda for the Birdshot Day 2012 and to socialise with other people who have Birdshot

This meeting will be held on Saturday 22 October from 12.00 p.m. to 3.00 p.m. at the Green and Fortune Cafe, King’s Place, 90 York Way, London N1 9AG. Directions to this venue, and further information on the venue can be found here: http://www.kingsplace.co.uk/food-drink.

It is a five minute walk from King’s Cross (underground and overground). It is bit of an imposing building – don’t be put off – there are art galleries and music venues inside, and it sits on the canal, so it is really nice inside. There is food and refreshments available and they have a comfy sitting area as well as tables – so we should be OK. We are hoping it wont be too noisy but if it is and if weather permits we can always go outside. Annie and Rea will arrive early and find seats.

More specific directions: As you walk up (northwards from King’s Cross) on York Way, you will see King’s Place on your right, about 300 yards from King’s Cross Station. Stay on the road level, and walk to the centre of the building (don’t take the first entrance, as this is the entrance to the Guardian) and you will see some steps down to a revolving door – go in there and straight in front of you, and to the left you will see the cafe (just before the back of the building).

We are so delighted that so many of you have said that you would like to meet up to discuss ideas for the Birdshot agenda, its really great to feel we have so much support and help available. We’ll allow at least couple of hours and we can carry on for as long as we want to. Don’t worry if you are a bit late, or if you have to leave early – we are very aware that people are planning to travel from some long distances, and we are grateful to you for making the effort.

We are really looking forward to meeting all or you again, as well as some new members who we haven’t met yet.

With all good wishes and look forward to seeing you then.

ANNIE and REA


Lesley Garrett becomes our patron

Credit: Simon Fowler/Decca Records

The Birdshot Uveitis Society is proud to announce that Lesley Garrett, CBE, the UK’s most popular soprano, has recently become our Patron.

Lesley Garrett, CBE said: “Our eye sight is so precious and it is only when we face losing it that we realise how much we take it for granted.”

Thank you so much Lesley for agreeing to take on this role for us.

Lesley Garrett, appears regularly in both opera and in concert, on television and CD; she has won both critical acclaim and the affection of many fans and music lovers. As a recording artist, she has thirteen solo CDs to her credit and her major television appearances include Lesley Garrett…Tonight, The Lesley Garrett Show the documentary Jobs for the Girls, Viva la Diva and The Lily Savage Show. Lesley was also the subject of a South Bank Show on LWT and her most recent music programmes include The Singer, Sacred Songs and Lesley Garrett – Desert Dreams all for the BBC.

Lesley’s recent television appearances have included the BBC1’s hit show Strictly Come Dancing, and Who Do You Think You Are? and she was one of the judges of Comic Relief Does Fame Academy and for ITV the daily show Loose Women. She also presented two series of Christmas Voices and recently When Royal’s Wed for BBC1. In May 2005 she both sang at and hosted the Classical Brit Awards, filmed at the Royal Albert Hall for ITV. During the autumn she sang the title role in Welsh National Opera’s new production of The Merry Widow and in autumn 2006 she  joined the cast of The Sound of Music as the Mother Abbess in the West End production at the London Palladium. In 2008 she performed the role of Nettie in the West End production of Carousel and in 2011 she returned to The Sound of Music for the final two weeks of the touring production.

Lesley was awarded a CBE in the 2002 New Year’s Honours List for Services to Music.

You can read more about the famous singer on her website:  http://www.lesleygarrett.co.uk/index.php

 

 

BUS Board meets Moorfields Board

Rea, Annie and three of the new BUS Directors, Peter, John and David, met with the Board of Moorfields Hospital on 1st September to give a presentation on the benefits to the NHS of involving patients in all aspects of their care and in research. BUS used the very successful outcomes of the first Birdshot Day held on 11 September 2010 to illustrate how much more has already been achieved by patients and professionals working in partnership. We are hoping that promoting patient involvement will ultimately mean that people with Birdshot will be less likely to lose their vision, will receive better treatment and will stay healthier.

This link takes you to the presentation that was given to the Board. They were interested to hear first-hand about the partnership and were keen to be supportive. Professor Peng Khaw said that “the patient is central to everything we do at Moorfields: from direct treatment and care through to training of doctors, nurses and other professionals as well as research into better diagnostic techniques, monitoring of disease and the development of safer, more effective surgical and clinical interventions.”

We believe that it is vital to fully understand your treatment and the implications of it, and to feel that you are working in partnership with your consultant and that your consultant fully understands you and the lifestyle you wish to lead whilst living with a chronic long term condition. A lot of research has been undertaken to show that patients who feel more in control, have confidence in their consultant, feel they are being listened to and feel that their consultant sees them as a person (rather than just a set of eyes that are malfunctioning) are likely to have more positive outcomes (and are also likely to save the NHS money!) The term for this is the ’empowered patient’ and we are keen to get this message across to the people that count in the NHS.

We have personal experience of not always being treated as an individual and we have heard from some of our members who have had similar experiences. There have been a number of issues raised with us such as not getting full explanations of the medications and side effects of the medications proposed; not being given choices about appropriate medications; medications being given that cannot be incorporated into the patients day to day life; numerous hospital appointments being given that jeopardise a patients work; previous test results not being available at the appointment, wasting the time of the patient and the consultant; patients sitting in a consultation whilst the consultant discusses their case with other professionals as though the patient is not real; patients not being seen by someone who has expertise in Birdshot and sometimes seeing more junior doctors who are not quite sure what to recommend; etc, etc. We have heard them all! One of our members told us “it’s like you are not even there when you go to an eye clinic appointment“.

This is not to suggest that everyone has these experiences, and there are a number of us who receive wonderful, patient focused care from the NHS. We celebrate and commend the professionals and organisations who have achieved this. BUT, we do want this to be the ‘norm’ and we want everyone with Birdshot to receive this sort of care.

We, at BUS, are really encouraged that Moorfields offered us an hour at their extremely busy Board Meeting, and that they took the time to ask questions and expressed huge interest in what we had to say. They also pointed out that the model we developed of the Birdshot Day has now been applied to Glaucoma, and the first Glaucoma Day will be held on 1 October 2011. As they say, imitation is the sincerest form of flattery, so we must be getting our messages across!

We very much hope that the idea of patient involvement can be duplicated in a similar way for other medical conditions across the country.

For those of you who attend Moorfields, they have set up a patient experience committee and we will keep you informed of what is happening on the committee. If any of you have been invited to contribute to this committee, please let us know, so we can inform our members.

 

Trial drug AIN 457 – a patients view

A Patients view of the recent study into the treatment of posterior Uveitis with a trial drug – AIN457

In 2007 I was sent to Shrewsbury hospital by my optician after a routine examination for contact lenses. After several months of tests and examinations, I was given a diagnosis of BCR but the treatment I received at Shrewsbury was not perfect and the following year – 2008 – Professor Murray was kind enough to take me as a patient at the Birmingham Eye Centre. Under his excellent care, assisted by Dr Alastair Denniston, my Birdshot stabilised under a regime of medication involving 5mg prednisolone daily (later reducing to 2.5mg) and 1gm of Cellcept daily (later reducing to 500mg). This was matched by a regime of anti inflammatory diet, dietery supplements and daily meditation as well as plenty of fresh air and exercise. In this way, I was able to maintain ‘quiet’ eyes.

In the course of routine visits to Professor Murray’s clinic, I was given routine slit lamp examinations as well as blood tests and annually, ERG tests and more recently, I began to have regular OCT scans.

In spring 2010 I was invited to join a phase three study into the effects of a new drug, AIN457 produced by Novartis, as a treatment for posterior uveitis. This was a double blind trial involving four cohorts – three on varying doses of the study drug and one on placebo. In August the same year I began fortnightly injections of the trial medication and the following month I stopped taking Cellcept as well as beginning to taper off the steroids.

Research on the internet revealed that other trials using the same new medication where also being conducted on patients with RA, Behçet’s Disease, Ankolysing Spondelitis, Psoriasis and Crone’s Disease – a host of auto immune conditions. Indeed, one study had already led to a product name for the new drug, Secukinumab.

By November, I was able to stop prednislone completely while my eyes continued to be free of inflammation, presumably with the benefit of fortnightly injections of AIN457. This situation continued until the following March (2011) when without warning, the study came to a premature halt. I had agreed to take part in a second stage to go through for a further six months so I was disappointed that the new treatment was suddenly unavailable, particularly when I had apparently had such good results. The only explanation from Novartis was that the results of the first part had not been good enough to warrant continuing the study.

After taking advice from Professor Murray and Dr Denniston, I decided to continue without reverting to the previous regime and to carry on without any medication for the time being. Further checks in the following months (most recently in June) have shown no sign of new inflammation. I am next due for a check up in October but as far as I can tell all is well just now. I am waiting to see the full results of the study which I hope will be published soon.

 

Nick Bucknall.

Birdshot Day, Saturday 3rd March 2012

We are pleased to announce that Saturday 3rd March 2012 is the date for our Birdshot Day to be held in London, UK. Please put it in your diaries. We hope this will be a really special day for people with Birdshot, their family members and healthcare professionals involved in the care of people with Birdshot. More details will follow as soon as they are available.

We have listened to your feedback and will be building on last year’s experience. We hope to be able to take forward the proposal of collecting blood and DNA from patients and family members for research purposes, as well as organising a range of amazing speakers. We will allow plenty of time for your questions to be answered and for socialising with other people with Birdshot.

If any of you live close to London and would like to help us fine-tune the Birdshot Day, we would gratefully accept your assistance. We’re planning to meet in the autumn and want your input into ensuring the day meets the needs of all attendees. Please let us know if you would like to be involved so that we can arrange a suitable venue and time to meet.

 

Annie and Rea

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

Volunteer help for BUS

We’d like to introduce you to some of the people who provide voluntary help to BUS.  All of these people either have Birdshot, have a partner or family member with Birdshot or have a professional interest in Birdshot.  It is wonderful the way this has just evolved, and it helps to make BUS a powerful tool for developing a Birdshot community. We are truly grateful to everyone who is involved with BUS.

Lori Bonertz is a Canadian pharmacist and medical editor living in northeastern British Columbia. She edits manuscripts for Dr David Mackey, a specialist in the genetics of eye disease, with a focus on glaucoma. She became interested in birdshot uveitis when a well-informed patient at her pharmacy had questions she couldn’t answer. While scouring the internet, she found the helpful UK BUS website. Her particular interest at work is smoking cessation. She and her Australian husband have four children and they enjoy skiing, hiking, and watching the UK series Top Gear and Sherlock Holmes.  Lori is helping us to make sure that all our news items on research and trials are accurate.

Hamamelis,  a retired pharmacist from the Northwest of England, recently edited  the Birdshot Chorioretinopathy fact sheet for us and has volunteered to proofread future fact sheets.  These two people provide us with our pharmacy expertise – without them, we would never be able to write informative news items for you.

Sue from Lincolnshire is talking to her local ophthalmologist from Hull Hospital to try and find ways of raising Birdshot awareness locally.  She has approached her GP, talked to her local optometrist and made approaches for us to the UK lottery fund for future Birdshot Days.  Sue would value help from others in the Lincolnshire and South East Yorkshire area who want to join forces with her in this initiative.  If there are enough people – (at this stage we don’t know enough in the locality), a local support group could also be formed.  Anyone interested in this should let us know and we will pass the details on.  Hopefully, this will be the first of many local support groups.  If there is anyone else who wants to start a local support group, I am sure Sue will be able to advise – she is brilliant at getting local people interested.

Steve is looking at producing a map of where our members are – we will then be able to see the geographical location of all members.  Currently, all we are able to analyse is what geographical location people access BUS from. Once Steve has completed the mapping, we can use this to look at whether there are ‘pockets’ of Birdshot, and what the implications of this might be.  Thanks, Steve, for progressing our research agenda.

Sandra has been gathering items together to hold a a raffle for BUS amongst her friends and local community.  She enjoys  making hand-made cards and has found that they have sold really well.  We are just about to receive a cheque from her.  Thank you, Sue for developing our first ever fund-raising initiative.  You are an inspiration.

And of course, David our Graphic Artist continues to produce stunning artwork for us. His latest triumph is the label and packaging for the Birdshot DVD. We have other projects where we hope he will assist us into the future.    David’s design skills have really helped us launch Birdshot Uveitis Society  across the world.  Everyone who comes across BUS comments on the very eye catching and effective logo!

Every small initiative helps raise the profile of the Birdshot Uveitis Society and Birdshot Chorioretinopathy.  We have just highlighted a few initiatives more to follow!

We have also started to notice that people with Birdshot do seem to be a very highly skilled group of people – just look at all the initiatives above.  What a powerful and inspirational group of people we are!!!

 

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!!!

 

T cell response to retinal proteins

Various diseases can be diagnosed by testing for biomarkers, a particular substance in the blood or tissue (e.g. troponin to determine whether someone has had a recent heart attack). So far there are no specific biomarkers for determining whether a patient has non-infectious uveitis. Using a mouse model of autoimmune uveitis, Mattapallil et al. found T-cells activated against a particular protein in the retina (retinal arrestin). This provides support for the theory that autoimmune uveitis is caused by the body attacking the retina and may lead the way to developing a blood test for diagnosing this disease.

Uveitis-Associated Epitopes of Retinal Antigens Are Pathogenic in the Humanized Mouse Model of Uveitis and Identify Autoaggressive T Cells.  (Journal of immunology (Baltimore, Md. : 1950). 2011 Jul 15;PMID: 21765017)

URL – http://www.ncbi.nlm.nih.gov/pubmed/21765017?dopt=Citation