Planning the Birdshot Day of 3rd March 2012

13 of us met up on Saturday 22nd October to plan the agenda for the next Birdshot Day on 3 March 2012.  We wanted to say a huge thank you to Sandra (who is planning to hold a fund raising stall on the Day, selling her handicrafts, Janie, Julia (who is offering us help with our administrative work), Sue W, Ann, Lesley (who are also offering help with our work), Hilary, Colin, Gail, David B.

We explained that we are trying to set up a  Biobank to collect and store samples from each person with Birdshot so that research can be carried out by clinicians and researchers throughout the UK. Most people who attend regional centres could have their samples taken at their regional centre.

For those people who do not attend regional centres, (we think there may be about 40 people), we are hoping to take their samples at the Birdshot Day, if we manage to progress the Biobank in time.

We, therefore, need to accommodate the taking of these samples within the Birdshot Day, without disadvantaging these people and making them miss the talks.

OPTOS will also be there. They are one of our sponsors for the day. They are coming along with their imaging equipment and a technician. We hope that they might be able to image every single birdshot person’s eyes on the day. It is quick, easy and painless takes about 30 seconds an eye, and it is fun. (We know we had it done at the London Euroretina this year). This will give a snap shot of all the eyes there on the day and will be very useful information for our doctors and clinicians.

We agreed that we would have an ‘open’ morning at the Birdshot Day with a variety of activities and keep the talks for the afternoon.

There were a lot of suggestions for the morning and afternoon, and we have tried to incorporate all views from our meeting, as well as all views expressed through feed-back from the previous Birdshot Day.  Here is what the timetable looks like following all feed-back.

If any of you have further suggestions for stalls, please let us know.  More importantly, if any of you have any contacts to staff these stalls, please, please get in touch with us.  We need all the help we can get!

Time
10 am – 1.00 pm (including tea and coffee) General Activities including networkingTaking samples of boods/DNA, etc for those people who do not attend regional centres Stalls: (Please note that these are all proposals and we need to do some work to see if we can get hold of these people – anybody able to help?) 

Fund-raising staffed by Sandra Foot to raise money with her arts and crafts  anybody else want a fund-raising stall?

BUS staffed by Annie and Rea to offer information and advice

Professionals  staffed with ophthalmologists and uveitis nurses so that people can ask questions and get adviceExpert patients for advice information and support any of you feel you are expert patients who can advise?

Expert friends, families and carers to provide information and advice.  Anyone an expert carer/friend/family member?

Regional stalls – Where we have already set up regional Birdshot networks (e.g. London) – information on those networks and how to join

Information about the National Birdshot Research Network and the Birdshot Biobank

How to take your medication – information on how and when to take your various different medications to make them most effective – a pharmacist – who?

Low vision aids including specialist glasses

Driving with Birdshot information on DVLA requirements and driving options – Lesley F

Registering as partially sighted benefits and disadvantages of registering – who?

ipads and kindles so that people can see whether using these will help them read books, etc – John H

Eye drops Scope Ophthalmics for those people with dry eyes and belpharitis  – Rea

Nutrition information on diets and nutrition to keep us healthy – who?  Anyone able to help with this?

Supplements  information on supplements and what supplements might help and how to take them with your current medication regimes – Nick and Caroline

Cosmetic surgeon who is qualified to advise about whether various procedures can be undertaken while taking our particular medication – who? Anyone able to help?

RNIB – information on services offered – Rea

AGNSS and SCG  The specialist government agencies that decide on what medications people with rare diseases should have available to them – Rea

Bates/Alexander and Head massages Lizzie May

Chiropractic – Mikael Petersen looking at your posture and what may help

Complementary approaches – mindfullnessacupuncture, ayurvedic medicine, etc – who?

Vision simulator

RCO Bosu

Optometrists – invite your optometrist

National Voices

The Eye Care Trust

 Olivia’s Vision

 Vision 2020 (UK) – Mike Brace

Audio Books where can we get these from?

Susan Piper’s paintings

Plenary Sessions – if we have a couple of small rooms available, there are requests for patients to tell their stories to those who want to hear other people’s stories and for people to talk about self-help

1.00 pm – 2.00 pm Lunch
2..00 pm – 2.30 pm The latest news on Birdshot – latest research, latest medication regimes Team of specialists involved in National Birdshot Research Network
2.30 pm – 3.00 pm Introducing the National Birdshot Research Network and the National Birdshot Biobank Team of specialists involved in National Birdshot Research Network
3 pm -3.30 pm Bones, DEXA scans and keeping your bones healthy

OR A patient Story

OR  Nutrition, anti-inflammatory diets and supplements

Dr John Armitstead from St Mary’s Paddington

We have had lots of patients offering

Who?
3.30 pm to 4 pm Tea
4 pm to 5 pm Panel Session – professionals and expert patients answer your questions Team of specialists involved in National Birdshot Research Network Rea Mattocks and Annie Folkard

 

Setting up Regional Networks

A group of us met on Saturday 22 October to try and plan the Birdshot Day of 3rd March 2012. It was such a good meeting, and everyone thoroughly enjoyed networking, comparing medications, comparing symptoms, having a laugh, etc, that it was decided to try and hold regular socialising events. Sandra F, Sue W, Ann and Lesley decided to set up the London Regional Birdshot Network (i.e. all those people who attend Moorfields, St Thomas, Croydon and who reside relatively closely to London).

Colin and Gail decided to set up the Hampshire and surroundings Regional Birdshot Network (i.e. all those people who attend Southampton, Winchester and surrounding hospitals and who reside relatively close to these areas). They have some exciting plans about seeing whether the main consultant can attend the first event.

We also are in touch with Adrian in Manchester who in his spare time, supports people with glaucoma via a local support group. Annie met him at the recent Moorfields Glaucoma day. Adrian would like to extend an invitation to our Birdshot members to attend the meetings he organises as he thinks that some of the talks he organises may well be relevant. There next meeting is on 9th  November  and full details can be found here.  Please do get in touch with Adrian if you are interested in attending.

It would be really good if anyone in Bristol or Birmingham or Leeds or Scotland or Ireland or Wales or Newcastle would like to set up Regional Networks.  Please let us know if you are inspired to so something by the action that Colin, Gail, Sandra, Sue, Ann and Lesley are taking.  We would love to have coverage right across the UK!

If you are inspired, we can tell you what is being planned for London and Hampshire and Manchester. Please email us to let us know of your interest.

Long live Team Birdshot – it just gets better and better!
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.

 

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.