Easyfundraising.org.uk – please sign up and raise funds for free!

Posted on August 16, 2012 by SueW

This website does exactly what it says – you can raise money for BUS every time you shop online and it won’t cost you anything, it’s that easy! Simply sign up at www.easyfundraising.org.uk and specify “Birdshot Uveitis Society” as the charity for which you are raising funds, then every time you make any purchase online you just need to do so via the easyfundraising website and the retailer will automatically make a donation to BUS. There is absolutely no cost to you, the site covers all of the major online retailers, and BUS benefits from a donation.

I recently booked the flights for a family holiday this way and we just got a donation of £17.85!

Please, if you do even a little shopping online, sign up today, we really do need your help!

Accessing unlicensed medications

Posted on July 23, 2012 by Reanna7

The Medicines and Healthcare products Regulatory Agency (MHRA) is the agency that regulates all new medicines. They weigh up the risks and benefits of each new medicine, following the completion of phase III trials and then decide whether to license it or not. Some of us with Birdshot will know that we are unable to get some medications that may be licensed elsewhere (e.g. in the US) or that have been tested at phase III trials, but have to go through the sometimes lengthy procedure to be licensed.

The MHRA is now consulting on whether they should provide early access to medicines before they are formally licensed. The consultation period ends on 5 October, and if the MHRA goes ahead with this scheme, it may mean that those of us who have tried all the more traditional approaches to controlling our Birdshot without success can get hold of newer medications earlier.

There are a few provisos, of course! The scheme will be voluntary and limited to medicines that show a “significant advance in treatment in an area of unmet need”. The MHRA also expects to limit the scheme to only one or two medicines each year. Finally, the scheme will be limited to those medicines that have reached phase III trials (apart from exceptional cases – yet to be defined). If this scheme goes ahead, the MHRA will provide an opinion of the risks and benefits of the medicine on its web site to help clinicians and patients decide, and it would then be up to the funding body (your local clinical commissioning group made up of GPs in your area; or specialist commissioning group) to decide whether to fund the medicine or not.

So, even if the scheme is launched, there will still be hurdles to jump over, but at least it provides hope for those of us who are struggling to get hold of medicines on the NHS which are not licensed here.

It would be really, really helpful if our patient and professional members could give their comments to the MHRA

To read more about the proposed scheme, please click on the link below:

http://www.mhra.gov.uk/NewsCentre/Pressreleases/CON174774

If you want to give your comment on this scheme, you can email earlyaccess@mhra.gsi.gov.uk by 5 October 2012

Next SE/London Meeting – June 9th 2012 with exciting new research update!

Posted on May 11, 2012 by SueW

The next meeting for Birdshot Friends in the London/SE area will be held on Saturday 9th June, from 10.30am – 1.00pm at St Thomas’s Hospital, Westminster Bridge Road, London SE1 7EH.

The meeting will take place in South Wing Lecture Theatre on the Ground Floor, near to the eye department. We might even go for lunch afterwards!

Joining us will be Professor Glen Jeffrey who has some new research to share with us and who is asking for our help – very exciting!!

There will also be some other guests on the day – watch this space!! – and plenty of opportunity to chat and catch up on all things Birdshot!

Everyone is welcome! If you are planning to come along please do e mail us at southeast@birdshot.org.uk

We look forward to seeing you there!

South East Team x

Help Us Make Birdshot a Priority For Research!

Posted on May 1, 2012 by SueW

We are re-posting this, as the survey ends on 31 July, and we need as many responses as we can get, in order to make sure that Birdshot becomes a priority for research. If you have not already done so, please complete this survey. It is quick and simple to do. We have posted some ideas about what kind of research is needed into Birdshot at the end of this post, to help stimulate debate, and give you some ideas. Remember that the more people who respond mentioning Birdshot, the more likely we are to get Birdshot as a priority!

The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance. It has been set up to find those areas of research that have not yet been identified. For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date. This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda. Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.

The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.

The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.

The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.

To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.

The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.

Thank you!

1. What causes Birdshot?

2. Which part of the immune system becomes disregulated?

3. How do you re-regulate the immune system without damaging the body?

4. How can we find less toxic medication that does not adversely affect mental health and quality of life, but preserves vision?

5. How can we ensure early detection of Birdshot to prevent sight loss?

6. What are the genetic links and why are several generations of some families affected, and why does it seem to affect mainly Caucasians?

7. Why is there a ‘spectrum’ of Birdshot?

8. Why do different people respond differently to different medication regimes?

9. Why is Birdshot treated systemically with toxic medications which adversely affect mental health and quality of life, when it seems to be confined to the eyes?

10.What does the link to HLA A29 mean in relation to treatment?

11. What is the risk/benefit analysis of toxic treatment to prevent blindness versus blindness?

12. What are the long term costs to health and social care of blindness which could have been prevented through the use of off license or off label medications?

13. Is Birdshot best treated by ophthalmologists or should a clinical specialism of immunology be developed?

14. Can holistic therapies such as acupuncture, meditation, hypnotherapy help in preventing or treating Birdshot?

15. Can supplements, such as vitamin D or other therapies treat Birdshot less toxically than current medications?

Government Rare Disease Plan – Consultation

Posted on April 18, 2012 by Reanna7

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 25^th 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!

How are patients involved in licensing new medications?

Posted on April 13, 2012 by Reanna7

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.

The full report can be found at

http://www.geneticalliance.org.uk/docs/citizens-jury-report.pdf

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.

Birdshot Chorioretinopathy Research Network

Posted on July 8, 2011 by Annie

We have finalised a date for the inaugural Birdshot 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.

BUS website – how effective is it?

Posted on July 6, 2011 by Annie

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

Posted on July 6, 2011 by Annie

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.

Please can you tell us where you live?

Posted on May 28, 2011 by Annie

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.