Fundraising initiatives 2018

Birdshotters and their partners are definitely trying to get more active in 2018.  In the process they are also hoping to raise valuable funds to help pay for some much-needed birdshot research.

We are particularly impressed that Louisa, a recently diagnosed birdshotter from the York area, has decided to take on a massive cycling challenge:  two thousand and eighteen miles in the year 2018.  She is doing this to help celebrate reaching her 50th milestone birthday.  Road cycling is a sport she has only recently taken up, proving that it is never too late to start.

Diagnosed last year, Louisa has also taken to cycling the 30-odd miles  from her home  to her eye appointments at York Hospital.

Louisa cycling

Louisa’s fundraising has already got off to a really good start, but she would be delighted if you should like to help her towards achieving her target.

Here Louisa tells her story to help her fundraising:

London Marathon 2018

Roger Brown is running the London Marathon in April 2018, helping to raise awareness about birdshot uveitis. He is also raising much needed funds for research into birdshot. He fully appreciates the impact that this rare eye condition can have on an individual, as his wife Caroline has been living with birdshot for the last six years. He knows just how tough it has been for her, and for the team treating her, to find effective treatment. Research is desperately needed to find better options to treat birdshot. Birdshot Uveitis Society is delighted that Roger is running in the London Marathon this year. Places in the London Marathon are like gold dust.  To get a place, you have to promise to do substantial fundraising.  For a small charity like the Birdshot Uveitis Society, its tough getting marathon places, so we are delighted to be teaming up with Fight for Sight to do this.

You can click on this link to read Roger’s story in detail.  He’d love it it if you chose to support his marathon run as he needs to raise £2500 to keep to his side of the deal with Fight for Sight.

Victory for Roger – the elation of completing the challenge

Moorfields Eye charity  Eye to Eye walk 4th March 2018

Team Birdshot is also taking part in the Moorfields Eye to Eye 14 mile walk on the 4th March 2018.  If you want to take part in this walking challenge, further details can be found here, and there is also a JustGiving link where you can donate.

 

Moorfields Eye to Eye walk – walking as Team Birdshot

Following on from last years success, Team Birdshot is taking part in the Moorfields Eye charities walk –  Eye to Eye 2018 walk, both the 14 miles and the 4 miles on Sunday 4th March 2018.  So far we have five people signed up walking for birdshot research, with a couple more people who are currently thinking about it. We’d love it if we can get 30 or 40 birdshotters walking (family and friends welcome) showing our support and enthusiasm for more research for birdshot.

If you would like to join us, please do sign up with Moorfields Eye  charity at:  https://www.moorfieldseyecharity.org.uk/eye-eye-2018 and let them know that you are walking for Team Birdshot.  If you prefer, you can pick up a registration form in the hospital which can then be returned to their office in an attached Freepost envelope. If you can’t find these in the hospital, Gaby in the Moorfields Eye Charity office is the person to go and find.  You may also see Gaby visiting the clinics, as part of her job is to go and meet patients.

Birdshotters can choose to walk either the 4-mile or 14-mile route according to fitness and preferences. Gaby has promised to let us have similar start times so that we can walk together, and that will also allow us to be able to get a great group photo before we set off.

4 miles – £12 to register

14 miles – £18 to register

There is no minimum sponsorship requirement: just raise as much as you can. You also get a free T-shirt and goodies at the end.

The times of the walk vary from 7.30am – 12 midday. If you are planning to do the 14 mile it is a good idea to start reasonably early.

If you want to take part, please sign up as directed above, but also drop me a line to let BUS know.  Here’s hoping for a sunny Sunday on 4th March!

https://www.justgiving.com/fundraising/team-birdshot-uveitis-society

 

 

Updated leaflet about BUS January 2018

Birdshot Uveitis Society is pleased to publish an updated version of our leaflet about BUS and birdshot uveitis.  It includes some basic information about the eye condition, the society and a simple Gift Aid form if you wish to donate to the charity.

If you want copies of the leaflet, you can print them off yourself to give to friends, family and colleagues so that they can better understand your diagnosis and  know where to go to find out more about the condition.  The leaflet fits on to two sides of A4.

 

BUS leaflet updated january 2018

 

New BUS factsheet and updated website page

BUS recently added a new factsheet which describes the difference between a biologic drug and a biosimilar.  It has been posted in both our factsheet section and the in the section which gives information about biologic drugs.

Biologics and Biosimilars what’s the difference? Oct 2017

In addition we have also updated our Birdshot research section adding links to a number of recent papers and removing the outdated links.  The new research page can be found at:-

Birdshot research papers

 

Sight village exhibition 7th and 8th November 2017

SIGHT VILLAGE LONDON is on from 7th-8th November 2017 at the Kensington Town Hall, Hornton Street, W8 from 9.30-5.30 on 7th and 9.30 – 3.30 on the 8th. It’s a chance to look at an exhibition for blind and partially sighted people and those experiencing age related sight problems. It’s a good opportunity to see the UK’s leading providers of products under one roof.  Details of the exhibition can be found on the below pdf file

Sight village information leaflet

 

All Party Parliamentary Group Inquiry survey looking to capture patients’ experience of eye care services in England

BUS received the below request from the RNIB and hope that people in the England might like to take the survey linked to below to help inform our government about eye care services in England:

The All-Party Parliamentary Group (APPG) on Eye Health and Visual Impairment is running an Inquiry during 2017 into the issue of capacity problems in NHS eye care services in England.

The APPG on Eye Health and Visual Impairment is made up of both members of the House of Commons and the House of Lords from all political parties.

The APPG Inquiry needs to hear from patients who have received treatment within the last three years (not including the routine provision of glasses or contact lenses) about their experiences of eye care services in England (both positive and negative experiences). The APPG would welcome responses from families and carers too.

Have your say and complete the patient survey https://www.surveymonkey.co.uk/r/APPG-Inquiry

If you would prefer to take part in this survey over the phone please contact the campaigns hotline on 020 7391 2123 to leave your name and contact number with one of team for a call back.

The survey is voluntary and will take about 15 minutes, is completely anonymous, and will help Parliamentarians make recommendations to improve the commissioning and planning of eye care services in England. We will also use the findings to support the future work of RNIB in improving care for people with eye conditions.

The survey will close on 20th October 2017.

For more information about the APPG inquiry visit https://www.rnib.org.uk/appginquiry/how-to-give-evidence

Humira and Ozurdex finally approved for treating non-infectious uveitis in England and Wales

Finally after months of consultations, NICE has published its guidance and recommendations for adalimumab (Humira) and dexamethasone implants (Ozurdex).

The general information for the public can be found:  https://www.nice.org.uk/guidance/ta460/informationforpublic:

We suggest you may also wish to read Recommendations and then, if you want to know more, turn to the Summary from page 19 onwards and finish by reading the ‘Implementation’, section 5 on page 27.

Please also be aware that the process of obtaining Humira (adalimumab) injection and Ozurdex (dexamethasone intravitreal implant) treatment won’t suddenly speed up in England and Wales because the NICE guidance has been published. However, having NICE guidance should make it much easier to obtain Humira or Ozurdex treatment if your consultant says you need it.

 

https://www.nice.org.uk/guidance/ta460/informationforpublic

Small Grants Award Scheme for Birdshot Research

We are delighted to announce that this year we have three awards available under the jointly funded small research projects scheme which Fight for Sight run.

Details about these awards are below:

Awards under this scheme are designed to provide support for birdshot clinical research studies only. The studies are to be conducted into any of the charity’s six research priority areas as detailed in the Charity’s Research Strategy 2012-2017. In addition the charity is keen to address the priorities identified by the Sight Loss and Vision Priority Setting Partnership

Fight for Sight is an NIHR Partner Organisation which means that clinical studies we fund are eligible for inclusion in the NIHR Clinical Research Network Portfolio. This allows the study team to have access to clinical infrastructure/NHS Service Support through the NIHR Clinical Research Networks.

Fight for Sight operates a Peer Review system that the charity believes enables an equitable and efficient way to review grant applications. Fight for Sight is unable to provide feedback for the Small Grant Awards Schemes.

Eligibility

  • Applicant must be affiliated with a UK academic or medical institutions.
  • Applicants must have a contract which extends beyond the termination date of the award.
  • These awards are limited to clinical research projects in the field of ophthalmology and vision science. Clinical research is research that either directly involves human participants or uses materials from patients (including human samples and human data).
  • These awards must not involve the use of animals or animal derived cell lines / samples.

Financial support and duration

  • Awards for up to £15,000.
  • Includes the costs of
    • employment (except Applicants; clinical applicants are expected to have protected research time in their NHS contracts);
    • consumables; and
    • equipment essential for the project.
  • Excludes indirect costs and any other non-attributable overhead costs.
  • These awards are tenable for up to 12 months.
  • These awards are not to be used to top-up existing grants.

Deadline

The call for “Small Grant Awards” is now open. The closing date for application submissions is 5pm on Wednesday 23 August 2017.

Application must be submitted via our online system grants.fightforsight.org.uk
Late applications will not be considered.

‘Patient voice in ophthalmology research’ meeting, July 2017

Birmingham “Patient Voice workshop” 12th July 2017

Until recently, it was unusual for doctors, researchers and patients to meet. Patients were excluded from medical conferences, other than being occasionally invited to attend as teaching subjects. Thankfully, this is changing. A meeting held at the Centre for Professional Development in the University of Birmingham Medical School (UK) on July 12th 2017 brought together patients and professionals on equal terms to exchange information and views on some of the ways patients and patient groups such as BUS are influencing ophthalmology research. Speakers included our director Annie Folkard and our research nurse Sue Southworth.  The workshop was masterminded by Birmingham’s Professor Alastair Denniston.

Annie Folkard opened the workshop by describing her journey as a patient, the pathway which led to the formation of the Birdshot Uveitis Society, and the progress that has been made to date. “The Birdshot Uveitis Society is like a huge communication hub, connecting not only patients, but clinicians and researchers as well…It’s very much a partnership between clinicians, scientists, researchers, charities and people with birdshot. We all play a part in this journey together.”

Sue Southworth, senior birdshot research nurse at Birmingham, sponsored by BUS, added: “Working with patient groups puts any clinician in a privileged position. Patients’ knowledge about their experience is valuable, important and a necessary component of discussions about eye research. Clinicians don’t learn solely from textbooks and lectures. The experience they have, throughout training and beyond, informs their practice. Patients’ experience of their condition is no less valuable. Clinicians are realising this. It is important to remember that the impetus for this first ‘patient voice’ day came from a clinician: things are changing.”

A speaker from another group reminded everybody that patients are not a separate species. They are fighters, often having to fight to be believed. However, discovering and then researching what patients actually experience from their conditions and treatments is not as easy as it sounds. There is often a mismatch between what patients and clinicians each feel is important in research. ‘Patient reported outcome measures’ (PROMS) constructed without patient input are an example of this inequality. One clinician speaker had worked with patients to develop ‘patient-generated outcome and experience measures’ (POEMS) to use in his research, to capture what mattered most to patients. Also, writing good patient information is notoriously hard to do, and this is another area where patient input can help improve matters.

Professor Peter Shah in action

Delegates heard some interesting examples of how patients had influenced research. These included the development of a patient-held ‘glaucoma passport’ to hold their essential information; an electronic way for patients to record health events between clinic visits, and the development of an ‘artificial intelligence’ application which will eventually interpret optical coherence tomography (OCT) scans, enabling new patients in the community to have quicker access to treatment.

Pearse Keane talking about the importance of communicating and the use of artificial intelligence in interpreting scans

Good communication, with the patient centrally placed, received repeated emphasis during the day. Basic principles included the clinician adjusting their approach to each patient by getting to know them; judging their feelings and reacting appropriately; being authentic and sincere, and the importance of what is said and how it is said.

During the day, sets of some quite pointed questions were presented to delegates for them to vote on electronically. One question was whether or not the current UK requirement of having to include details of patient involvement on research grant application forms was just a trendy ‘buzz word’ requirement to obtain research funding, or whether it was a genuine move to get patients involved right from the beginning of planning research, to incorporate their views as part of the research design and ensure the project would be truly relevant to patients.

The day provided a great opportunity to meet and learn from other patient groups and those with whom they work. Groups can often feel isolated in promoting the patient voice to doctors and researchers on what really matters to patients, and in trying to get that input transformed into useful research. BUS’s presence and contributions to the meeting showed we are recognised as an important part of the ophthalmology patient group movement.

Professor Alastair Denniston, meeting co-chair, said: “BUS is a brilliant example of how patients can work together to change the status quo – and bring a new culture of research to improve patient care. At a personal level, I know that my own priorities have changed as I have learnt to listen to ‘the patient voice’ – hearing what matters to people who actually live with the condition. The ‘Patient Voice Day’ was an exciting opportunity to share our experiences in the ophthalmic community and to learn from each other across a range of conditions and backgrounds.”

For more information, follow the link to: The patient is speaking, an in-depth article published in the British Journal of Ophthalmology in March 2017.

Margaret Gilmour discussing the posters over coffee with one of the delegates

Left to right: speakers, Derek Kyte, Professor Mel Calvert from CPROR and Professor Graham Lee from Brisbane

Tessa Richards, BMJ Senior Editor Patient Partnership (left) with Geraldine Hoad from Macular Society and Tasanee Braithewaite from Moorfields Eye Hospital

During the coffee break

Photo credits: Xiaoxuan Liu

Margaret Gilmour

July 16th 2017

Recent donations

Marmalade

Member Margaret Gilmour’s marmalade-making skills have resulted in £150 being donated to BUS – one single pot of marmalade was raffled at our local north west meeting in Manchester and made around £70, plus a further £80 was raised from sales to local friends in Bolton.  Personally, I think Margaret’s marmalade is ‘to die for’ – and she has inspired me to have a go next year during the marmalade orange season.  Margaret enters her marmalade regularly in the World’s Original Marmalade Festival in Cumbria, this year achieving ‘silver’ (18/20).

Dress-down Friday –  matched donation from Shire’s Leasing

Just over £300 was donated to us by members of staff at Shire’s Leasing when they had a dress-down Friday in support of Birdshot.   Everybody was encouraged to make a donation of just £1.00 to come to work in casual clothes.  And to help even more, the company matched the donations received.  It really is an easy way to raise a bit of money for birdshot research.   Thanks go to the organiser and Helen George, a member of their staff who has birdshot.  Helen has also done a great job at raising awareness amongst her work colleagues, which is also a really important thing to do, as it may help people to get eye conditions diagnosed more promptly.

Gifts in memory of Uwe Ploog

BUS has received a number of generous gifts in memory of Uwe Ploog, a Moorfields birdshot patient who took part in the pilot ‘red light’ study which is continuing.  His wife decided to request donations to BUS and the Pituitary Foundation instead of sending flowers in his memory.  The gifts to BUS will be used to go towards future birdshot research. We would like to thank all who kindly donated in this way.

Regular donations

One of the ways in which it is easy and quite painless to give to BUS is to make a small monthly donation by Direct Debit via the Just Giving site.  We’d like to thank the member who signed up to this last month.  If you are also interested in doing this, just click the following:  https://www.justgiving.com/birdshotuveitissociety and select ‘make a monthly donation’. You will also be able to see some of the ways other people have raised money for BUS on the Just Giving donation page.

Annual Shoot

Next month we will be holding our annual clay pigeon shoot on election day, 8th June! This is our major fundraising event and we are hoping the sun will shine.  We have one of our leading clinicians as guest speaker and Lord Jeffery Archer will again be auctioning the fabulous prizes which will be on offer.

BUS’s grateful thanks go to everyone who helps us raise funds.  Our administration costs are virtually non-existent, so nearly all money raised goes towards our charity objectives.