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.

NICE – Uveitis (non-infectious) – adalimumab and dexamethasone [ID763]

It has been a long time coming but at last you can now  access all the committee papers, presentations and the draft NICE guidance for adalimuab injection (Humira®) and dexamethasone implant (Ozurdex®) as all the documents are now available on the NICE website: https://www.nice.org.uk/…/indevelopme…/gid-ta10007/documents

This multiple technology appraisal is a long drawn process and  BUS has been involved in this from the start in June 2015.   Since then we submitted an organisation statement and provided a patient expert to give the patient’s perspective on Humira.    We, along with RNIB and Olivia’s Vision have provided the patient perspective as we feel it is very important that these totally different technologies are available for people with sight threatening posterior uveitis.

There are many pages involved in the committee papers, but below we provide an index to help you find your way around.

As an organisation we will be providing our comments about draft guidance to try and get it improved and as members of the public you are also free to submit comments via the website.  The committee will meet on the 12th April to consider the proposal and the guidance will then be published in July 2017

We have often felt swamped by all the NICE paperwork. Under the webpage heading ‘Appraisal Consultation’ you will see links to the ‘appraisal consultation document’ and to the committee papers.

There are 684 pages of committee papers, but below we provide an index to help you find your way around. The appraisal consultation document contains the draft recommendations for the use of Humira and Ozurdex and this is fortunately considerably shorter. As an organisation, we will be providing our comments about the draft recommendations to try to get them improved. As members of the public, you are also free to submit your comments on the appraisal consultation document via the website.

The NICE appraisal committee will meet again on the 12th April to consider all the comments received on the appraisal consultation document. The NICE guidance will then be published in July 2017 as a ‘final appraisal determination’.

NICE committee papers, March 2017: page index to the 684 pages

 p3: ‘pre-meeting briefing’ done for committee members before February 15th 2017 meeting (includes useful notes linked to the assessment report, eg, p9: a treatment pathway provided by the clinical advisors).

  • p65:’matrix of consultees and commentators’ (issued February 2016).
  • p61: ‘final scope’ (issued June 2016).
  • p69: ‘Assessment Group Report’ (the economic modelling done by Sheffield; issued 30th November 2016).
  • p298: AbbVie’s response to the assessment group report.
  • p318: Allergan’s response to the assessment group report.
  • p326: BUS’s response to the assessment group report.
  • p328: Olivia’s Vision’s response to the assessment group report.
  • p330: RNIB’s response to the assessment group report.
  • p350: Assessment Group response to RNIB comments.
  • p351: Assessment Group response to Olivia’s Vision comments.
  • p352: Assessment Group response to BUS comments.
  • p357: Errata to the Assessment Group Report (all highlighted in red).
  • p431: AbbVie’s submission to NICE (August 19th 2016).
  • p489: Allergan’s submission to NICE (August 19th 2016).
  • p598: BUS’s submission to NICE (summer 2016).
  • p610: Olivia’s Vision’s submission to NICE (summer 2016).
  • p624: RNIB’s submission to NICE (summer 2016).
  • p640: NHS England’s submission to NICE (includes references to sirolimus).
  • p648: Prof Phil Murray’s submission to NICE.
  • p656: Sri Sharma’s submission to NICE.
  • p663: Ali Mapstone’s patient expert statement to NICE.
  • p671: Maxine McCarthy’s patient expert statement to NICE.
  • p681: Nicola Symes’s NHS England statement to NICE.

 

 

 

Humira formulation change

The formulation of Humira (adalimumab) prefilled pens and prefilled syringes is being changed. The changeover from the original formulation to the new formulation is being rolled out in different countries at different times.

Humira’s original formulation is known to cause stinging on injection. AbbVie, the makers, have been working on a new formulation to try to reduce this. They have removed citrate and some of the other extra ingredients from the original formulation used in the prefilled pens and prefilled syringes. This also means that the volume of liquid in each pen and syringe can be reduced, so the new formulation pens and syringes contain 40mg adalimumab in 0.4ml, compared with the original formulation pens and syringes which contain 40mg adalimumab in 0.8ml. The actual adalimumab dose in the new formulation pens and syringes is exactly the same as in the original formulation pens and syringes.

The situation as at February 2017 is:

UK: new formulation pens and syringes were introduced in July 2016 (the paediatric 40mg/0.8ml vials are still supplied in the original formulation).

US: original formulation is still in use: pens, syringes and paediatric vials.

Canada: original formulation is still in use: pens, syringes and paediatric vials. Launch of new formulation pens and syringes is planned for 2017.

Other countries: no information.

If birdshotters using Humira could let BUS know when their country changes over to the new formulation, we would be very grateful. We would also like to hear of your experiences with the new formulation, particularly if you have previously used the original formulation.

Birdshot social in Manchester 22nd April 2017

You are cordially invited to a birdshot social in central Manchester on Saturday 22nd April 2017.  Details on the poster below.  Please email info@birdshot.org.uk to RSVP or call David on the telephone number given if you are planning to come  We need to know numbers so that we can cater accordingly.  There is not charge for this social, but you are welcome to make a donation to the Birdshot Uveitis Society if you would like.

birdshot-manchester2-arcon-colour-a4-rgb-bleeds

We are very grateful to our hosts the law firm DWF llp for kindly providing their conference facilities to us and a map of DWF’s location  can be found here.  If you require carparking please also let us know.

Working with patients for a brighter future

What sort of impact can patients and staff collectively make on eye clinics, in supporting eye research and in education at Moorfields Eye Hospital and at other eye hospitals across the country? What sort of hospital do we want the new Moorfields to be?

I joined a range of patients, charities, and staff at a Saturday morning workshop on December 12th 2016, brain-storming how we (patients and staff) can collectively improve services at the hospital to make them more patient-centred.

There were six five-minute talks which were filmed, and then a lot of discussion around the ideas that had been raised.

I was there representing BUS, to tell our story, summarized in the illustration below. If you click on the photograph, you will see the drawing in greater detail. It really captures the essence of the workshop. Rather amusingly, you can see me standing on top of the world, under the banner “Forming partnerships” saying “I no longer feel alone.” The drawing, done during the workshop discussions as we spoke, is by a talented artist, Sandra Howgate.

15400415_10153937170831331_5299232337659056995_n
 working-with-patients-towards-a-brighter-future

The team that ran the workshop New citizenship project will be presenting a report to the hospital.

Moorfields is part of the new NHS England Vanguard hospitals collaboration. You can find out more about the Vanguard movement on the Moorfields’ website http://www.moorfields.nhs.uk/news/moorfields-vanguard-new-nhs-hospitals-collaboration-drive

Moorfields charity walk from EyetoEye please sign up and help!

Help raise money for Birdshot research !

We thought it would be fun to get a team together to do the annual Moorfields EyetoEye walk on Sunday March 12th 2017.  After all, there are a lot of birdshotters who get treated at Moorfields and we believe it is great to be able to collaborate with other charity group events, especially if it is going to help promote relevant research.  Moorfield’s Eye Charity plans to have cake and coffee at the end and they are also going to have a live band and a bit of a celebration.  But afterwards, we wondered if we might find a venue close by (pub or cafe??) and have a bit more of an informal meet-up if we feel like 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.

So, our team is called “Birdshot.

You can sign up online https://www.moorfieldseyecharity.org.uk/eye-eye or 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, but we will supply BUS T-shirts for all our walkers.

The times of the walk vary from 7.30am – 12 midday. I think we should go for a mid-morning time slot, eg, 11am, but I am open to suggestions.

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 12th March!

Annie

Survey for prospective uveitis trial – help required

If you suffer from birdshot, or some other form of posterior uveitis (idiopathic, sarcoidosis, PIC, scleritis, etc) you may like to take part in this survey about a prospective uveitis trial for adalimumab in which Birdshot Uveitis Society are involved and trying to get funded. Your input as a patient is very important and we would really appreciate your help. To do so, follow the link below. There are only 8 short questions. Your response is anonymised and there is no need to leave an email address if you don’t want to. It would be most helpful if you say the country where you live. Thank you so much in advance.

https://qtrial2011.az1.qualtrics.com/jfe2/form/SV_e4jh8nDnKVLTZmB

If you prefer to fill in a paper survey you will find a link to a pdf here which you can download, print and fill in with a pen or as a PDF, whichever you prefer. PDF link.

Please return your responses either by email to info@birdshot.org.uk or by post to PO Box 64996, London SW20 2BL.

Individual funding request – a call for help!

Have you and your consultant tried and failed to get access to a much-needed birdshot uveitis treatment, such as the biologic treatments adalimumab or infliximab?

If so, this is a call for help directed to English and Welsh birdshotters who have tried unsuccessfully to gain approval to use these specialised treatments through Individual Funding Requests (IFRs). Currently, IFRs are the only way that we can hope to receive these treatments. We believe that the present situation is that nearly all IFRs are being turned down.

NHS England is currently consulting on four of its ‘generic’ policies. These are policies to commission treatments outside the normal annual commissioning cycle. We need to influence this process.

Genetic Alliance UK wants to submit a response to the NHS consultation that truly represents the experiences of the rare and genetic disease community.

Please tell us about your funding experiences via the following link that takes you to Genetic Alliance UK’s short survey:

https://www.surveymonkey.co.uk/r/IFRcallforevidence

Thank you.