Louise Ramskold, Rebecca Morris, Robert Wilkinson and Ruthiran Kugathasan, UCL medical students presented their posters about the  Birdshot Day held in September 2010 to the AoME (Academy of Medical Educators) this Wednesday.    Here they are pictured in front of their posters.

Titled:   A Visual perspective, (right) and Birdshot Chorioretinopathy a Birdseye view (left), the posters set out what the students had learned from their involvement with the day.

Here are couple of quotes from two the students who were involved.  As well as us patients learning a lot, it seems that the day has also helped to make our future doctors much more aware of a patients’ need.

“As a basis for medical education it taught us about a novel way of enhancing patient care, providing support for patients, their relatives and the professionals looking after them, decreasing medical errors by increasing awareness of the disease (and the potentially toxic drugs used to treat it) and optimising the strength of the relationship between the patient and health care professionals. Through this effort as medical students, we have not only learnt about the disease, but enhanced our communication, organisational and evaluation skills. We have discussed with patients and professionals the problems of caring for patients who have a chronic visually disabling disease (for which there is no cure) and understood the disease from the patients’ point of view.”

“The Birdshot Patient Day was not only a day in its isolation, but a whole project which has provided me with invaluable skills and memories. Being involved as a medical student in the organisation of the event from its very outset allowed me to see it grow from an animated vision to reality. In preparation of the day, we were given concrete tasks – such as generating means of evaluating the day and to investigate the, possibly differing, views of patients and health care professionals on various Birdshot related themes. With these tangible goals in mind, we set off learning about Birdshot, problems in treating and living with a rare and chronic disease, support structures available and the invaluable source of enthusiasm and knowledge from expert patients. I found it extremely inspirational to work so close with both patients and a whole range of health care professionals. The assignments gave obvious purpose to the work and as we attended seminars on Birdshot as well as interviewed patients, it quickly became clear how important mutual understanding and effective communication are in order to decrease needless medical errors and to improve the doctor-patient relationship. This innovative strategy of engaging medical students in patient days can be applied on a much broader scale and I personally feel that it should be something that more students have the opportunity to pursue – both for our own and future patients’ benefit.”

A Birdshot member said this just before Christmas about what we have done:

“If I ever come across someone with a rare disease without a support group, I’ll tell them to set one up along the lines of BUS!”

We are  of course delighted to hear this !

Dear Members and Friends and Supporters,

We would like to thank you for having helped BUS grow and develop. We don’t think there is any ophthalmologist in the UK who does not know about Birdshot now! We could not have done this without your help and support. 2011 is going to be a great year for us – if we get the research moving quickly, we could be looking at better, more effective medication regimes for us – and maybe even prevention of Birdshot for future generations!

We need your continued support – please let us know if you would like to get more involved in 2011, and let us know what your priorities are for 2011.

Merry Christmas and a very happy, healthy and prosperous New Year to all our members, friends and fans

Rea and Annie

PS an especially big thank you to David our graphic designer who came up with this unique and striking interpretation of the Christmas robin for our very first Christmas card.   We didn’t even have to ask!   Thanks David you’re a star.

Many people with a  Birdshot diagnosis  will be familiar with  some of the problems highlighted below.  We believe that BUS and its members  can make a difference and help get better treatment for our particular rare disease.  But it is only by working together.

Below is Rare Disease UK’s latest newsletter and link to a  recent report about rare diseases which may be of interest to you. Continue reading →

We previously told you that we had been invited by Moorfields to attend the symposium of the NIHR Specialist Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology. Here is a brief report. We had the chance to meet many leading people involved in eye research, clinical ophthalmology and wider health research, including those pictured below. We were introduced to Professor Dame Sally Davies by Professor Khaw and discussed patient participation in research. It is good to know that the current Chief Medical Officer is now very aware of the BUS /Moorfields activities.

Donating Eyes

We talked to Professor Luthert about the possibilities of people with Birdshot donating their eyes in the future for research.   Here Narciss Okhravi answers the question posed by one of the delegates at the Birdshot Day, who wanted to know what she should do if she wanted her eyes to be donated to research after she has died. BUS is now following this up to find out how to enable this. Continue reading →

NIHR (the National Institute for Health Research) funds INVOLVE which promotes active public participation in NHS, public health and social care research to improve the way that research is prioritised, commissioned, undertaken, communicated and used.  The BUS/Moorfields partnership was invited to attend the 2010 INVOLVE Conference in Nottingham to display a poster and talk about the Birdshot Day. Here is a picture of the poster! And a photograph of Narciss Okhravi, Rea and Nik Koutramanos in front of it.

The conference was attended by many small charities, similar to ours, and some health staff. What was particularly striking was that the BUS partnership with Moorfields attracted real interest as it seems to be pretty unique.  We have a partnership that has already led to some effective outcomes (the Birdshot Day where people with Birdshot and professionals exchanged information and learnt from each other) but we also have the foundations for some real research to get underway.

People were impressed by the power of a small charity like ours, particularly as it deals with a rare disease, where patients often struggle to gain effective access to diagnosis and treatment, because the disease is not well understood.

BUS has a growing database of people with Birdshot, and without this database, good research would be much harder to carry out as researchers would not be able to access enough people!   Well, Annie and I (Rea) already knew how powerful BUS has been in raising the profile and lobbying for resources and treatment, but we are really happy to have that confirmed by INVOLVE. So, for all of you who have become members of BUS, please note how effective your membership has been and how powerful we, as a group of Birdshot sufferers, are becoming.

It was really helpful attending the conference, and we made some great connections. INVOLVE has asked us to write an article for them, as they were so impressed by the partnership. Narciss and Rea are meeting the Chief Executive of AMRC, Simon Denegri to see if he can help us begin to raise money for further Birdshot Days and further research. AMRC is the Association of Medical Research Charities, and we are hoping to gain some real help and information from this meeting.

Rea

It’s a busy week ahead for us: Rea, together with Moorfields consultant Narciss Okhravi and Dr Nik Koutroumanos,  will attend the Involve Conference 2010. Continue reading →

Narciss, Rea and I have been busy reviewing all the video footage that was taken at the Birdshot day with Alan Lacey , our wonderful audio visual specialist. Alan has managed to capture most of the lectures and talks and we also have some great interviews of people talking about their experience with Birdshot. We would like to thank all these people for giving so freely of their experiences to make these ‘vignettes’ such an amazing learning opportunity for our health professionals. We would also like to thank our team of volunteer interviewers who did such a brilliant job – Mikael Porath-Petersen, Lizzie May and Kevin Wooding – they were truly professional and we cannot believe that they have never done this before! Continue reading →

Over the summer Rare Diseases UK sent out a survey on patients’ and families’ experiences of rare diseases. They received a fantastic 600 responses and are in the process of completing a publication to outline the results of the survey. The publication: “Experiences of Rare Diseases: An insight from patients and families” is due to be launched in November.

To accompany the launch Rare Diseases UK are hoping to get media coverage to raise awareness of rare diseases and some of the issues patients and families face in areas such as:

– accessing a correct and timely diagnosis

– the availability of information about the condition

– accessing the range of support needed

– accessing treatment

– coordination of care

– the availability of information and the ability to participate in research

If you are interested in raising awareness of the need for a strategy for rare diseases and are willing for your story to appear or to be interviewed by the media, please could you download and complete the form linked here and return it to Rare Disease UK. This is really helpful as it means Rare Disease UK can move quickly if there is any interest from the media.

Rea and I participated in a similar initiative last year and Rea’s birdshot experience was published in a women’s magazine. We would encourage you to submit your story if you are able to and you never know you may be able to help us raise awareness about Birdshot Chorioretinopathy and contribute towards getting a quicker diagnosis and better treatment in the future for others.

Sue who attended the Birdshot Day has volunteered to help us with  BUS.  We’ve had a number of offers of help and  really appreciate this and are sure that it is going to help us grow and become more prominent in the future.

Last week she drew our attention to an article about “Adaptive Optics”. This was something that was new to us and looks as if it could be of  interest to people with birdshot.

The article describes a development which is being researched to help look deep into the eyes.  The idea is that it will help with the earlier diagnosis of conditions like  diabetic retinopathy, macular degeneration and glaucoma.  Like Birdshot, the earlier these are diagnosed,  the more successfully they can be treated. Continue reading →