Category Archives: Patient info

US edition of the Birdshot Survival Guide

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The US edition of the Birdshot Survival Guide, edited by Patricia Clarke and Leanne Oswald

BUS is delighted to publish online, a revised edition of the Birdshot Survival Guide, especially for Birdshotters who live in the US. BUS members Patricia Clarke and Leanne Oswald collaborated on this and provide us with the revised edition.

At the moment there are not plans to print physical copies but we suggest that you may like to print off copies of the last few pages of the guide (page 34 – 39), to keep with your notes about your eye clinic appointments so that you can note down useful number that you can have readily to hand.

COVID19 and Birdshot Uveitis

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The aim of this video is to give a list and a very brief rundown of resources for patients with Uveitis/Ocular Inflammation, not just in the United Kingdom but worldwide. These cover practical advice, where to go for support and wellbeing, and sources for self-monitoring. *Disclaimer: Have only just recovered from four weeks illness myself so voice is sounding really low energy. Sorry!* LINKS to resources mentioned in the video: UK Uveitis Resources: Uveitis National Clinical Study Group. Many of the resources highlighted in this video are to be found on our website here: https://www.uveitisstudygroup.org/ Twitter @UveitisCSG UNCSG COVID-19 portal: https://www.uveitisstudygroup.org/cov… UNCSG Patient FAQ: https://www.uveitisstudygroup.org/cov… Patient risk self-score grid: https://www.uveitisstudygroup.org/use… PinGU (Patient involvement group in Uveitis): https://www.uhb.nhs.uk/patient-involv… Olivia’s Vision UK (support for anyone affected by Uveitis): http://www.oliviasvision.org/ Twitter @OliviasVision British Society of Rheumatology https://www.rheumatology.org.uk/covid… Twitter @RheumatologyUK (Webinars advertised here) Versus Arthritis (Practical Information): https://www.versusarthritis.org/news/… Behçet’s Disease: https://behcets.org.uk/coronavirus-co… Twitter @BehcetsUK ——————- UK General Resources: NHS Hub: https://www.nhs.uk/conditions/coronav… Hand Hygiene: https://www.nhs.uk/live-well/healthy-… UK Government: https://www.gov.uk/coronavirus UK Govt: Guidance on social distancing and self isolation: https://www.gov.uk/government/publica… ——————- North America: American Uveitis Society Resources: https://uveitissociety.org/ Letter for patients on immunosuppression from MERSI: https://uveitis.org/coronavirus-disea… USA Government guidelines: https://www.cdc.gov/coronavirus/2019-… Canada Government guidelines: https://www.canada.ca/en/public-healt… France: https://www.gouvernement.fr/info-coro… IUSG in French: https://www.iusg.net/uploads/images/I… ——————- Australia and NZ: https://www.health.gov.au/news/health… https://arthritisaustralia.com.au/wor… https://www.health.govt.nz/our-work/d… WHO: https://www.who.int/emergencies/disea… ————————————————————————————- Self-Monitoring College of Optometrists A4 sheet for home vision checking: https://www.college-optometrists.org/… Amsler grid for macular problems: https://www.macular.org/wp-content/up… Home vision checking apps: Peek Acuity: https://www.peekvision.org/en_GB/peek… Kay iSight Test Professional app (useful for children above 18 months): https://kaypictures.co.uk/product/kay… ——————- Mental Health Mind.org.uk general advice: https://www.mind.org.uk/information-s… NHS Every Mind Matters tips and ideas: https://www.nhs.uk/oneyou/every-mind-… NHS One You apps to help reduce stress, anxiety and to improve mood: https://www.nhs.uk/oneyou/apps/ Online communities: Healthunlocked.com CRIS helpline for 24/7 counselling: https://www.crisistextline.org/topics… Twitter: @crisistextline ——————- For Parents and Children PRES video: https://wordday.org/wp-content/upload… This is a new and useful resource for families of children with inflammatory eye disease and especially those on immunosuppressive meds. https://www.uveitisstudygroup.org/use… The CCAA site: https://www.ccaa.org.uk/ CCAA info on shielding for children and teenagers: https://www.ccaa.org.uk/wp-content/up…

Birdshot day 2018, SESSION 1

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Birdshot Uveitis Society (BUS) is delighted to bring you the talks from our Birdshot Day held on 17th November 2018. We are very grateful to the media team at Moorfields NIHR Biomedical Research Centre who have kindly edited and put the presentations together for BUS.

Below you will find the videos of the talks given in Session 1. These provide an excellent introduction to birdshot uveitis and also what is happening to your immune system when birdshot starts to develop. Alastair Denniston’s five-minute talk explains what a ‘Birdshot POEM’ is (Patient Outcomes Experience Measures): a quick snapshot survey about how the patient currently is feeling about their vision.

These five-minute and 10-minute talks explain this complex subject in a way that is easy to understand. The videos may be helpful to show your friends and family if they are interested in finding out more about what your birdshot diagnosis means for you.

Session 1: Introduction to Birdshot and the immune System and the Birdshot POEM

More about Laura Steeples MBChB(Hons), FRCOphth

Laura is a Consultant Ophthalmologist at Manchester Royal Eye Hospital (MREH). She graduated from the University of Glasgow in 2006 and completed specialist training in the North Western deanery followed by two years of sub-speciality training in uveitis at MREH and Bristol Eye Hospital. Laura was appointed as a Consultant in adult and paediatric uveitis in 2016 and is an honorary lecturer at the University of Manchester. Laura is involved in uveitis research and has been an investigator in several national and international clinical trials. Laura regularly presents at international and national meetings and publishes in peer-reviewed journals. She is an active member of several networks including the Uveitis National Clinical Study Group, Paediatric Ocular Inflammation Group, European Society of Retina Specialists and the Birdshot Uveitis Society. She also contributes to patient safety work for the Royal College of Ophthalmologists.

More about Richard Lee BMedSci, BMBS(Nott), MRCS(Eng), MRCOphth, PhD

Richard is a Consultant Ophthalmologist specialising in uveitis. He has clinics in both Moorfields and Bristol Eye Hospitals. However, he is also an immunologist working to understand how the immune system and the eye interact in the context of diseases such as birdshot. To do this, he supervises and works with teams of clinicians and scientists in the UK (principally at UCL, Bristol and Birmingham) and in the US at the National Eye Institute in Washington DC. His official job title is lead for experimental medicine for inflammatory eye diseases at the UK’s Biomedical Research Centre for ophthalmology, funded by the UK National Institute for Health Research (NIHR) and based at Moorfields Eye Hospital.

More about Professor Alastair Denniston, MA, MBBChir, MRCP, FRCOphth, PhD

Alastair is Consultant Ophthalmologist (Uveitis and Medical Retina) at University Hospitals Birmingham NHS Foundation Trust and Honorary Reader at the University of Birmingham, UK. Alongside Prof Philip Murray, he leads the Birmingham Regional Birdshot Uveitis Clinic which is utilising novel means of imaging to try to improve detection of active disease. He also leads on the development of the National Birdshot Biobank and the Birdshot Registry (database) with Charlotte Radovanovic, Birdshot database project manager. He was awarded an MRC Clinical Research Training Fellowship in 2006, and completed his PhD in Ocular Immunity in 2009. He regularly publishes research papers in scientific journals and is active in research related to birdshot, with a particular emphasis on improving our ability to monitor the activity of birdshot and other forms of uveitis. To further this work, he established the EQUATOR consortium (www.equator.vision) in 2013 with Mr Pearse Keane. Alastair is keen to promote public awareness and patient engagement with ophthalmic research and has been actively involved with the Medical Research Council (MRC) Max Perutz Science Writing Prize and the British Science Festival.

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Birdshot Day 2018, SESSION 3

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Professor Russell Foster CBE, FRS, FMedSci

Sleep and the lack of sleep is something that that birdshotters tend to suffer from, so we were delighted and honoured to be able to get the world-renowned professor of sleep and circadian rhythms to be our guest speaker. Below we present his fascinating talk: ‘The eye and regulation of biological time’ which is followed by a series of very interesting questions from the audience in a separate film clip.

More about Russell Foster

Russell Foster is Professor of Circadian Neuroscience, Head of the Nuffield Laboratory of Ophthalmology and Director of the Sleep and Circadian Neuroscience Institute at the University of Oxford. He is a Fellow of Brasenose College, Oxford. Russell’s research interests span the neurosciences, but with a focus on the regulation and generation of sleep and circadian rhythms, and what happens when these systems go wrong across multiple areas of health. He has published over 240 peer- reviewed scientific papers and four popular science books on sleep and circadian rhythms. For his discoveries, he has received multiple prizes and honours, not least election to the Fellowship of the Royal Society in 2008 and the Academy of Medical Sciences in 2013. In 2015, Russell was appointed as a Commander of the British Empire (CBE) for services to science and awarded a DSc from the University of Bristol.

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Birdshot Day 2018, SESSION 4

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Living with sight loss is something that every birdshotter worries about. For most of us, our loss of vision is quite gradual. Without treatment, we are liable to become severely sight impaired eventually. With better treatments becoming available, this is fortunately less likely to happen.

Julian Jackson – “Living with Sight loss”

Here Julian Jackson tells us what it is like to live with sight loss. He suffered from retinitis pigmentosa and in his 40’s lost his sight completely. http://visionbridge.org.uk

Below, Preeti Singla, a low vision specialists, tells about how to maximise our vision through the use of apps and equipment that do not have to cost a fortune. A copy of her apps and gadgets handout, is found here: https://birdshot.org.uk/wp-content/uploads/Maximising-your-visual-potential-Handout-2.pdf

Preeti Singla – “Maximising your visual potential

More information about Julian Jackson

After a long career in management consultancy and organising events in emerging markets, followed by five years as Director of Development and then Senior Adviser to a leading eye research charity, Julian launched the social enterprise ‘VisionBridge’ in June 2016, supported by a growing nationwide group of academic researchers, clinician scientists, clinicians and patient advocates. He is building on the work he started in 2014 to promote eye health, increase the awareness and understanding of sight loss and introduce the extraordinary world of eye research to the public, eye health professionals, patients and the wider visually-impaired community across the UK.

Julian lost his sight in 2010 to a retinal inherited disease and therefore has a personal as well as a professional interest in the daily battles being waged in hospitals and universities across the UK to prevent sight loss, treat eye disease, restore sight and improve the quality of life for patients through enhanced rehabilitation.

More information about Preeti Singla MSc MCOptom DipTp (IP) Prof Cert Glauc

Preeti is a Specialist Optometrist with over 15 years’ experience in profession, spanning NHS hospitals, community optometry and as the clinical supervisor for the undergraduate optometry degree at City University, London. She started her career in primary care (‘high street’ or community practice) but quickly realised that her passion lay in secondary healthcare and the management of eye conditions, rather than in screening and the commercial side of optometry. She worked for a number of years across both sectors and then in 2010 made the switch to working in the hospital service full-time. She has worked for The Royal London Hospital Whitechapel, Moorfields Eye Hospital and most recently for Buckinghamshire Healthcare Trust, covering Stoke Mandeville, High Wycombe and Amersham Hospitals. Her work in the hospital sector has covered a broad range of experience in both core optometry clinics and also in an extended role, working alongside ophthalmologists in paediatrics, glaucoma and retina specialities. She has a keen interest in low vision rehabilitation and too on the role of Low Vision Lead at the Royal London, working closely with low vision aid suppliers. Preeti has also written a number of articles the most recent being a series of three articles on low vision.

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Birdshot Day 2018, SESSION 5

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Birdshot Uveitis Society and Fight for Sight have co-funded a number of small grants for birdshot research. Here are video updates from the recipients of five of these projects. They were all asked to make sure that their talk was no longer than 10 minutes, with an additional five minutes for questions. Further project descriptions can be found at the following link. https://birdshot.org.uk/funded-birdshot-uveitis-research-projects/

Colin Chu -‘Investigating Birdshot using human induced pluripotent stem cell modelling’

https://vimeo.com/327024591

Alastair Denniston – ‘Update of the Birdshot database and biobank’

https://vimeo.com/327016934

Omar Mahroo – ‘Update on the RETeval device’

https://vimeo.com/327043191

Philip Murray – ‘Health Utility’

https://vimeo.com/327068379

Graham Wallace – ‘Update on iron overload’

https://vimeo.com/327028545

Mark Westcott – ‘BOSU Study – How many new cases of birdshot each year?’

https://vimeo.com/327039177

Further brief details about the speakers

Colin Chu PhD, FRCOphth, MA, BM, BCh, is a National Institute for Health Research (NIHR) Academic Clinical Lecturer at the University of Bristol and Bristol Eye Hospital, working with Professor Andrew Dick on gene therapy and ocular inflammation (uveitis). During ophthalmology specialist training he was awarded a Medical Research Council (MRC) and Fight for Sight Clinical Research Training Fellowship, gaining his PhD with Professor Robin Ali at UCL Institute of Ophthalmology. He has previously undertaken research at the MRC Laboratory of Molecular Biology in Cambridge, the Weatherall Institute of Molecular Medicine in Oxford and at the Save Sight Institute in Sydney.

Professor Alastair Denniston, MA, MBBChir, MRCP, FRCOphth, PhD, is Consultant Ophthalmologist (Uveitis and Medical Retina) at University Hospitals Birmingham NHS Foundation Trust and Honorary Reader at the University of Birmingham, UK. Alongside Prof Philip Murray, he leads the Birmingham Regional Birdshot Uveitis Clinic which is utilising novel means of imaging to try to improve detection of active disease. He also leads on the development of the National Birdshot Biobank and the Birdshot Registry (database) with Charlotte Radovanovic, Birdshot database project manager. He was awarded an MRC Clinical Research Training Fellowship in 2006, and completed his PhD in Ocular Immunity in 2009. He regularly publishes research papers in scientific journals and is active in research related to birdshot, with a particular emphasis on improving our ability to monitor the activity of birdshot and other forms of uveitis. To further this work, he established the EQUATOR consortium (www.equator.vision) in 2013 with Mr Pearse Keane. Alastair is keen to promote public awareness and patient engagement with ophthalmic research and has been actively involved with the Medical Research Council (MRC) Max Perutz Science Writing Prize and the British Science Festival.

Omar Mahroo MA, MBBChir, PhD, FRCOphth, FHEA, is a consultant ophthalmologist with subspecialty expertise in retinal disease, managing patients at Moorfields Eye Hospital and St Thomas’ Hospital. He completed a medical degree and PhD at the University of Cambridge, and post-doctoral research at Cambridge and the Australian National University. He then commenced clinical house officer jobs in Cambridge, followed by ophthalmology training in London. His main research interest is understanding retinal function through electrophysiology. He has received funding from Fight for Sight, the Birdshot Uveitis Society, National Institute for Health Research (NIHR) and Thomas Pocklington Trust. He was recently awarded a £1.1m Wellcome Trust Clinical Research Career Development Fellowship to investigate disease mechanisms in patients with inherited retinal conditions and also the effects of common genetic variants on retinal function in healthy individuals, including variants related to myopia. His research is based at the UCL Institute of Ophthalmology and at King’s College, London where he is Honorary Senior Lecturer. He has been trialling the use of a quick-to-use hand-held electrophysiology device that could help manage patients in clinic.

Professor Philip I Murray MBBS, DO(RCS), PhD, FRCP, FRCS, FRCOphth, undertook most of his clinical ophthalmology training at Moorfields Eye Hospital, London and his basic science laboratory training at the Institute of Ophthalmology, London and the Department of Ophthalmo- Immunology, Amsterdam. He is Professor of Ophthalmology, Institute of Inflammation and Ageing, University of Birmingham. His laboratory research is focussed on understanding:
• why intraocular tolerance fails in uveitis
• what immune mechanisms initiate and drive the inflammatory response
• what can one do about it?

He is Honorary Consultant Ophthalmologist at the Birmingham and Midland Eye Centre (BMEC), Sandwell and West Birmingham Hospitals NHS Trust and runs two dedicated regional and supra-regional uveitis clinics per week. He enjoys the challenging and frustrating nature of uveitis but also finds it immensely rewarding. He is involved in clinical trials on novel therapies for uveitis and until recently he had a special interest in cataract surgery on the uveitic eye. He is part of the Birmingham National Centre of Excellence for Behçet’s syndrome. From 2004-2016 he was Secretary of the International Uveitis Study Group. He sits on numerous national committees, is section editor for three journals, an examiner for the Royal College of Ophthalmologists (RCOphth), external examiner for the Royal College of Surgeons of Ireland and past external examiner, Optometry BSc (Hons), Aston University.

Graham Wallace, BSc, PhD, is a Senior Lecturer in the School of Immunity and Infection, Birmingham University. He has published over 75 research papers in scientific journals as well as reviews in the fields of ocular immunology, Behҫet’s syndrome and immunogenetics. He has received grants from Guide Dogs for the Blind Association, Fight for Sight, and the Wellcome Trust. He is an enthusiastic communicator on the theme of immune responses in the eye and the effects of gene polymorphisms on ocular diseases. Graham is on the medical panel of the Behҫet’s Syndrome Society and speaks at meetings of patient groups on a regular basis.

Mark Westcott MD, FRCOphth, CCST, is a Consultant Ophthalmologist at Moorfields Eye Hospital, London, where he specialises in uveitis, and also at St Bartholomew’s and The Royal London Hospitals. After residency training in London he spent a Fellowship year in glaucoma at the UCLA Stein Eye Institute, Los Angeles. Thereafter he returned to Moorfields Eye Hospital to undertake a Specialist Fellowship in medical retina and inflammatory eye disease.

Mark has co-authored over 40 scientific papers and regularly lectures both nationally and internationally. He is an honorary Senior Lecturer at the Institute of Ophthalmology, UCL. His research interests include infectious uveitis, birdshot disease and visual dysfunction in glaucoma.

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Birdshot Day 2018, SESSION 6

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‘Birdshot Question Time’ – panel of patient and professional experts, chaired by Philip Murray.

An hour-long questioning and answer session at the end of the day where a panel of experts, both health professionals and patients, answered questions from the floor as well as questions that had been sent in advance.

https://vimeo.com/327433269  

Also, one of the consultants gave us written answers to the questions that were asked in our international birdshot Facebook group. You will find a copy of these written answers here: https://birdshot.org.uk/wp-content/uploads/Questions-for-the-Birdshot-Day-final-and-complete.pdf

Professor Philip I Murray MBBS, DO(RCS), PhD, FRCP, FRCS, FRCOphth

Phil is Honorary Consultant Ophthalmologist at the Birmingham and Midland Eye Centre (BMEC), Sandwell and West Birmingham Hospitals NHS Trust and runs two dedicated regional and supra-regional uveitis clinics per week. He enjoys the challenging and frustrating nature of uveitis but also finds it immensely rewarding. He is involved in clinical trials on novel therapies for uveitis and until recently he had a special interest in cataract surgery on the uveitic eye. He is part of the Birmingham National Centre of Excellence for Behçet’s syndrome. From 2004-2016 he was Secretary of the International Uveitis Study Group. He sits on numerous national committees, is section editor for three journals, an examiner for the Royal College of Ophthalmologists (RCOphth), external examiner for the Royal College of Surgeons of Ireland and past external examiner, Optometry BSc (Hons), Aston University.

He has published over 180 peer-reviewed papers, contributed numerous book chapters and authored four textbooks, including the highly successful ‘Oxford Handbook of Ophthalmology’. He has a keen interest in undergraduate ophthalmology teaching (previously national lead for the RCOphth), is an adviser to three national uveitis patient groups, helped set up a successful local patient involvement group in uveitis and is an advocate of the ‘patient voice’.

He is a fervent supporter of the English Championship side Brentford FC, and plays baritone sax in ‘Out of the Blue Big Band’ and ‘The Soul Providers’ 

New BUS factsheet and updated website page

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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

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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

 

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

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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.