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

 

Royal College of Ophthalmologists News writes….

URL:   RCO NEWS  A short piece about the “Birdshot Uveitis Society”, the “Birdshot Day,” the “Birdshot Day DVD” and the forthcoming “Birdshot Research Network Meeting” was included in the latest edition of the RCO News.  This newsletter is circulated to  a large number of ophthalmologists.  As it has a circulation list of over 1,000  it is a good place for publicity, as it will undoubtedly help us to get Birdshot Chorioretinopathy better known, across the wider ophthalmology community.

We are delighted to receive this publicity and very much hope that Ophthalmologists interested in Birdshot get in touch with us to find out more about the Birdshot Research Network Meeting which is taking place in Birmingham on the 18th October.

There are only a limited number of spaces so if you are interested in becoming involved and want to attend this meeting you need to contact us quickly before all the places are taken.

Annie and Rea

 

 

 

 

Birdshot Day Sponsorship Update

This is just to let you know that the next Birdshot Day is planned for Saturday 3rd March, 2012 – starting at about 10.30 a.m. and finishing about 4.30 p.m. It is going to be held at the Grange Hotel, St Pauls, London which has a fabulous 5 star conference venue. This has been generously donated by one of the BUS members – we have such amazing members!

Our sponsorship efforts are going well. We have already received a promise of generous sponsorship from Optos who are going to be bringing their wonderful imaging machine along as well as core sponsorship from Friends of Moorfields. We are very grateful for this as it provides us with a really good start. We are working hard to get further funds together so that the costs of lunch and refreshments can be covered. Anybody out there who can tell us where we might get some more sponsorship from?

If you haven’t done so already please put the date of 3 March 2012 in your diaries. We hope the Day will be a really special one for people with Birdshot, their family members and healthcare professionals involved in the care of people with Birdshot.

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 although time might just defeat us as the hoops you have to jump through to allow bloods and DNA to be taken outside of a hospital setting and with a group of patients who do not have their consultants there are quite overwhelming. There is a ton of bureaucracy to get through as well as a considerable logistical problems to overcome. But we remain optimistic. We will also be organising a range of amazing speakers, and, as requested, we will be allowing plenty of time for socialising and networking with other fellow Birdshotters!

Please drop us an email at birdshot@live.co.uk if you are interested in coming and we will send you the registration forms once they are available. We are hoping that this Birdshot Day will be even better than the last, which needless to say was an enormous success!

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


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.

 

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

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

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 Day DVD

The Birdshot Day DVD has finally arrived. It contains recordings of all of the days talks, interviews with people with Birdshot, health professionals, charities and low vision specialists who attended.

Today we have written to everyone who came to the day telling them about it and asking if they want to receive copies. We have written to our consultant specialists to see if they want copies, but we also want to hear from you if you would like to receive a copy as well. (subject to availability!)

We have a limited stock, and what we are suggesting is, rather than charge for the DVD, you can make a small donation to help pay for the postage and packaging costs, with anything left over going towards a future Birdshot Day. To do so, please press the donate button on the website.

If you would like a copy, please email us and let us know where you would like the DVD delivered to. Annie and Rea

 

Credit: David Bethell graphic artist – DVD cover design

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.