Folic acid Q &A – why take it with methotrexate?

We have just published a short Q&A factsheet about folic acid and methotrexate because this is something that we often get asked about. This is the first in what we plan to be a series of short Q&A factsheets.

There is a link to the folic acid factsheet below. It can also be found in the factsheet section of our website.

https://birdshot.org.uk/wp-content/uploads/Folic-QA-Factsheet-Mar-2018.doc

 

4th Birdshot day, 17th November 2018

We are delighted to announce details of the 4th BUS Birdshot Uveitis Day on Saturday 17th November 2018. It will be held at the Grange City Hotel, 8-14 Coopers Row, London EC3N 2BQ, close to Tower Hill Underground station and Fenchurch Street mainline rail station.  This educational day is intended for people with birdshot uveitis, their family members, health professionals who treat people with birdshot, those who research birdshot, or for anybody who wants to learn more about the condition.

This year we have a really exciting programme planned, and as well as our fabulous UK team of birdshot uveitis expert speakers we are also honoured to welcome Professor Jennifer Thorne,  Cross Family Professor of Ophthalmology at the Wilmer Eye Institute, Johns Hopkins Baltimore,  where she is also chief of the Division of Ocular Immunology,  and Dr Marina Mesquida who is an ophthalmologist clinician scientist, now working for Roche Pharma research and early development as Translational Medicine Leader in Ophthalmology.  We are also extremely fortunate to have Professor Russell Foster, who is a professor of circadian neuroscience, the Director of the Nuffield Laboratory of Ophthalmology and the Head of the Sleep and Circadian Neuroscience Institute, Oxford University, for our keynote talk about sleep and how problems with sleeping (or rather lack of it) affect our health.

A two-course buffet lunch, tea and coffee will be provided. The day will close at 5.00pm but we are also planning to organise an informal social get-together afterwards in a nearby pub or bar, to allow even more time for chatting. Details will be announced nearer the day.

Below is the outline programme for the day:

BIRDSHOT DAY NO 4 PROGRAMME

Saturday 17th November 2018 from 10.00am – 5.00pm with registration and coffee from 9.15am.

SESSION 1 Chaired by Professor Miles Stanford

Birdshot ABC: to include information about birdshot uveitis, the immune system and getting the most out of your eye appointment.  Speakers to include: Mr Richard Lee (Bristol and Moorfields), Miss Laura Steeples (Manchester) and Mr Greg Heath (York).

SESSION 2 Chaired by Professor Alastair Denniston

Overview on the world of birdshot research, with Professor Alastair Denniston and Professor Andrew Dick interviewing Professor Jennifer Thorne and Dr Marina Mesquida.

SESSION 3 Chaired by Professor Andrew Dick

Sleep and how it affects your health and immune system: Professor Russell Foster, Professor of Circadian Neuroscience, Oxford University.

SESSION 4 Introduced by Annie Folkard

Living with sight loss: practical tips and apps that may help increase independence if you have started to lose vision. Speakers: Julian Jackson, Chen Yogev from Orcam and Preeti Singla, an expert low vision optometrist.

SESSION 5 Chaired by Professor Alastair Denniston

BUS/Fight for Sight funded research: short update on what we have discovered so far. Speakers include: Dr Graham Wallace, Dr Omar Mahroo, Mr Mark Westcott, Dr Colin Chu and Professor Philip Murray.

SESSION 6 Chaired by Professor Philip Murray

Birdshot – treatment and trials update. Have your say with a professionals and patients panel. Speakers to include: Professor Andrew Dick, Professor Jennifer Thorne and Dr Marina Mesquida, Professor Miles Stanford.

QUESTION TIME Chaired by Professor Andrew Dick. The birdshot panel answers your questions.

AFTER-EVENT SOCIAL We are going to have a social after the main event in a local bar or pub. Please let us know if you think you might like to attend this and we will send you more information about it later.  We are just trying to judge numbers at the moment.

As well as the talks, on the day you will be able to network and socialise with our ‘Birdshot Community’ made up of professionals, people with birdshot and family members.  You will be able to:

  • Learn more about birdshot and the immune system
  • Learn how to get the most from your eye clinic appointment
  • Learn more about the impact of sleep on your immune system and health
  • Meet experts in the field of birdshot and vision impairment
  • Meet other patients with a birdshot diagnosis
  • Ask questions about birdshot
  • Find out about new treatments and research

As before, we will have a range of exhibitors attending.  There will also be interactive sessions in the breaks where you can learn more about the immune system and also talk to people involved in birdshot research.

Please register on line to reserve your place, or print off the Birdshot Day Registration Form 2018 and send it to BUS, PO Box 64996, London SW20 2BL, or return it by email to info @ birdshot.org.uk.

This event is being organised by BUS and members of the National Birdshot Research Network.  We are particularly grateful to Professor Andrew Dick, Professor Alastair Denniston and Karen Bonstein for their help with developing the programme.  We are extremely fortunate to have the continued support of a dedicated group of clinicians and researchers who form the heart of the National Birdshot Research Network.

BUS very much looks forwards to meeting you all on Saturday 17th November 2018.

Annie

for Team Birdshot

Email: info @ birdshot. org.uk

Book your places now!

As before, the conference, including lunch, is free, but we do require a £20 refundable registration deposit (plus £1 non-refundable administration fee to pay for postage and Paypal fees). Your registration fee can be returned when you attend the Day, but if you choose to donate your registration fee to help BUS develop the next Birdshot Day, we very warmly welcome this. You can pay your registration fee by using the button below (debit and credit card & PayPal), or by sending a cheque by post to BUS, PO Box 64996, London SW20 2BL.


Please select your ticket option



If you are claiming benefits or on a pension, we will waive the deposit as we do not want to prevent people attending due to financial constraints. Please select this option on the dropdown PayPal button.

Accommodation

If you want overnight accommodation, the Grange City Hotel has offered us a concessionary rate.  Please note that to obtain the special rate, your hotel booking must be made at least one month in advance of the event, as nearer to the date prices will unfortunately go up.     We have been offered a special rate including English breakfast and complimentary upgrade to executive room where available for:

  • Friday 16th November – £119 + vat
  • Saturday 17th November – £139 + vat

The reference people should quote when booking via phone (020 7863 3700) or email city.reservations@grangehotels.com  is CCT1711090.

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.

 

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

 

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.

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.