General | Page 3

Government Rare Disease Plan – Consultation

Birdshot is a rare disease.  Because of this, it can sometimes be difficult to get the right diagnosis and treatment.

The Government will be implementing a Rare Disease Plan by 2013.  This plan SHOULD help all of us, with rare diseases get better services.  But will it?  The plan is now being consulted on, and the closing date for comments is 25th May.

This is our opportunity to give our opinions, and make sure the rare disease plan meets our needs.

You will remember that BUS has worked with Rare Disease UK  (the national alliance for people with rare diseases and all who support them) to help advise the government on what people with rare diseases need.  Some of our recommendations have been incorporated, but we are worried that this plan will not fully meet the needs of those of us with Birdshot and other rare diseases.

Individual patients can respond to the consultation, as can patient organisations and healthcare professionals.  If you are an individual patient, or a healthcare professional, please take the time to have a look at the rare disease plan, and see if you think it will work for you.  The plan can be found at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_132880

If you want to understand why the proposed rare disease plan might not meet needs, Rare Disease UK have produced a very good presentation that you can listen to at:

http://www.anymeeting.com/RDWebinarEngland/EA56D880804C

If you have any concerns at all, following listening to the above presentation, please do submit your comments to the Department of Health.  If you need help in designing your comments, Rare Disease UK has provided help – just click on the link below.

advice document

Alternatively, you can submit your comments to Rea at info@birdshot.org.uk and she will collate and present them

Many thanks everybody – if we work together, we might be able to get an NHS system that meets our needs!

General | Page 3

How are patients involved in licensing new medications?

On 13 February 2012, Genetic Alliance UK published a report of a Citizens Jury’s findings.  The Citizens Jury was tasked with deciding on the balance of risk versus benefit of new medications for serious and rare diseases.  We are hoping that this report will influence the regulators for those of us with rare, serious diseases, who struggle to find appropriate medications.  The regulators often take a very cautious view about the risks of medications – however, many of us with serious conditions are prepared to take risks (as long as we are fully informed) if the benefits are that we can continue to live a good enough life.

This is something we, with Birdshot, already face.  We know that our medication regimes can be toxic, but we make the fully informed decision to take medication in order to preserve our sight.  That is our choice.

Rea was a member of the Citizens Jury – here she is with her fellow jurors.

More information on the Citizens Jury can be found at: http://www.geneticalliance.org.uk/latest-news.htm

Here are the findings of the Citizens Jury:

1. Regulators should include psychosocial factors in their decision making – Jurors would like to see regulators broadening the range of issues which they consider when deciding whether to approve a new medicine. Jurors have generated a list of 25 psychosocial factors that are important to them, to be included in the assessment of risks and benefits of new medicines.

2. Regulators should be more permissive for those treatments for people with rare and/or serious conditions-Because of their often unique circumstances, patients with rare and/or serious conditions may well be willing to take greater risks than the system currently allows. They should be given that choice.

3.  Patients should be more involved in all stages of the process, from setting the research agenda, to post-marketing authorisation decisions – Patients’ experiences and preferences should be included at all stages. Patient representatives (such as patient group members) should be supported to be joint decision makers, alongside clinical experts, throughout the process.

4. Patients should be better supported to make their own decisions – Decision-making about new medicines is challenging, but possible for most patients provided they are given adequate information and support? (or something like that). Jurors generated a list of questions to help guide patients when deciding on their own treatment options.

General | Page 3

Birdshot Chorioretinopathy Research Network

We have finalised a date  for the inauguraBirdshot Research Network meeting, to be held in  Birmingham on Tuesday 18th October.  We have written to a few uveitis consultants, but it is possible that we may not have written to yours.  If you are keen for your consultant to be involved in the Birdshot Research Network you can ask them for us by printing off a copy of the letter that you  will find here  and giving it to them yourself.   We would love as many Birdshot specialists to be involved as possible, but unfortunately spaces at the meeting are quite limited, so they will need to get in touch with us  quickly to let us know of their interest.

Thanks

Annie and Rea

NB Unfortunately this post applies only to people in the UK.


General | Page 3

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.

General | Page 3

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.

 

 

General | Page 3

Please can you tell us where you live?

If you have a birdshot diagnosis,  please can you  kindly tell us which town/village or city do you live in and which hospital are you treated at.  Please do this via a  short email to Rea and Annie at birdshot@live.co.uk.

We have access to mapping software and thought it would be interesting to map the geographical location of people we know with Birdshot, together with the centres we know where Birdshot is treated.

We  already have this information for around a hundred of our members,  but it would be great if it could include a bigger group.

This map is something we wish to develop.   It will help us pinpoint areas in the country where we could have a local support group.  It will also be interesting to see if there are more people with a birdshot diagnosis in particular geographic locations.   Who knows what we might discover!

Overseas members are also welcome to let us have this information as it will be very interesting to do this globally as well.

We look forward to hearing from all of you.

 

Annie and Rea

 

General | Page 3

Website down-time

Please accept our apologies for the fact that the site was down for a few hours on Tuesday.  We moved server and it took a little time to get the site back up and running.  It all now appears to be working fine, but if anyone spots something not working correctly we ‘d be very glad if you could let us know, so we can put it right.

Please note that passwords for the old site log-in no longer work.  We will be doing a manual reset and notifying you of your password in due course.

Your log-in to the forum has not changed.   The forum is proving to be a useful way for members to communicate with each other.    If you want to sign up and need our help to do so, please let us know.

Annie and Rea

 

 

 

General | Page 3

Website rebuild

As some of you are aware we have been having problems with the website, and before it actually broke, we decided we needed to rebuild it urgently. We knew that this was something that we would have to do ourselves, as  we simply didn’t have the necessary funding to pay for it. There wasn’t time to find sponsorship for this either.

Neither Rea nor I are really experts in this field, but luckily we found Tracey Rickard, (WordPress custom theme, design and website development),  via another contact,  and she kindly came to our rescue.  Unbelievably she has given a large chunk of her time to us for free, for which we are extremely grateful. She  successfully performed the upgrade for us, and we are particularly glad that we involved her as it  turned out to be a lot trickier than envisaged.  She subsequently helped with some of the styling as well.  We would certainly have struggled without her.

Apart from the visual appearance, you will notice some changes:  all information is now available to everyone. We have abandoned the members area, now that we have the Discussion Forum up and running.  (Separate registration required)

Please be reassured that you are all still safely registered on our database.    The registration process for new members to the  database is now slightly different. It will now be by email done by us, rather than by automated website software.

We will be sorting out any glitches and problems that develop as quickly as we can. Please tell us if you encounter problems as we can’t sort them out if we don’t know about them!

Normal BUS news updates should resume at the end of this week.  Watch-out for the email and make sure you have both our email addresses birdshot@live.co.uk and birdshot@uveitis.net, saved in your address book to be sure to receive the update.

ANNIE AND REA

 

Please  tell us what you think by commenting below.

General | Page 3

Update on Birdshot Uveitis Society.

Since the launch of the Birdshot Uveitis Society website just over a year ago, we are now in touch with over 250 people with Birdshot from across the world with nearly 100 of these people living in the UK and signed up and registered with BUS.

In addition we have people registered from as far away as away as USA, Canada, Honolulu, Fiji, Israel, New Zealand, Australia,  South Africa as well as several European countries. 25 healthcare professionals are also signed up (NOTE this does not include all of the medical people involved with the Birdshot Day). These professionals with an interest in Birdshot range from consultants, researchers, registrars, doctors, nurses, medical students, pharmacists and other allied professionals.

We believe that BUS is making strides towards our objectives, having managed to identify a significant group of people who have the condition. We believe that we are in a position to be able to provide a good cohort of patients for researchers interested in doing research into this sight threatening disease.

Annie and Rea

General | Page 3

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