News

  • Fight for Sight announces 13 new awards to fund vital eye research

    Fight for Sight partners with nine different organisations to fund impactful and innovative research

    Fight for Sight, the leading eye research charity, has awarded grants totalling over £180,000 for thirteen vital research projects in partnership with nine different organisations. Fight for Sight has doubled its partnership working from the previous year, to further extend their impact and support for innovative research.

    New funds have been awarded to support research in these key areas:

    Dementia and visual impairment:
    For the first time, Fight for Sight and Alzheimer’s Research UK have teamed up to fund research into sight loss and dementia as many people with neurodegenerative diseases have problems with their vision. Pearse Keane from UCL’s Institute of Ophthalmology will aim to detect Alzheimer’s disease through images of the retina. Working with researchers from Moorfields, who will analyse a database of over 2 million eye scans, the team will identify features in the scans which are commAon to people who have developed a neurodegenerative disease. The longer term aim is to develop a screening tool for earlier detection of Alzheimer’s disease. The research will also enable a better understanding of why people with neurodegenerative diseases have problems with their vision.

    Dementia and age-related macular degeneration (AMD):
    Fight for Sight and Alzheimer’s Research UK are also jointly funding a project being led by Dr J. Arjuna Ratnayaka from the University of Southampton. Both Alzheimer’s disease and age-related macular degeneration (AMD) have been linked with a group of misfolded proteins called amyloid beta (Aβ). The aim of this research is to study how Aβ proteins in the vitreous, the substance that fills the centre of the eye, change with age and disease progression. The research team will collect vitreous samples from AMD patients, screen for changes in Aβ levels and compare the results to those from healthy individuals. This research could help further prove that changes to retinal Aβ levels may be an effective biomarker for high-risk individuals likely to develop AMD before the actual symptoms of sight loss occur.

    Birdshot uveitis:
    Fight for Sight is partnering with Birdshot Uveitis Society to fund Professor Alastair Denniston’s research into birdshot chorioretinopathy which is taking place at University Hospitals Birmingham NHS Foundation Trust. The world’s first National Birdshot Biobank and Registry has been created, which is enabling researchers and clinicians to work towards better outcomes for birdshot treatments. Professor Denniston will study the genetic makeup of birdshot patients to understand the causes of the condition and develop ways to predict disease progression.

    Glaucoma:
    Fight for Sight and International Glaucoma Association are supporting a research project by Professor Colin Willoughby from Ulster University. Using the Treatment of Advance Glaucoma Study (TAGS), which has recruited over 450 patients, Professor Willoughby will explore the genetics of patients with advanced glaucoma. His team will provide predictive testing to improve early diagnosis. This will identify patients at risk of progression and may help to explain why the disease differs between different ethnic groups.

    Fight for Sight will also fund a project led by Dr Andrew Osbourne from the University of Cambridge, whose objective will be to improve our understanding of brain-derived neurotrophic factor (BDNF) signalling in human retinal tissue. BDNF and its receptor, tropomyosin-related kinase-B (TrkB), help maintain the survival of retinal ganglion cells, which gradually die, leading to sight loss and eventually blindness. This research could help treat patients with progressive glaucoma, particularly those who receive treatment to lower intra-ocular eye pressure yet still experience deterioration of their vision.

    Retinal vascular disease:
    Fight for Sight in partnership with National Eye Research Centre is funding Dr Adam Dubis from Moorfields Eye Hospital NHS Foundation Trust to create a database of normal eye blood flow features. This will define a range of healthy blood flow so that abnormal blood flow can be better identified. This information could result in improved diagnostic markers and potentially better treatments and patient management.

    Leber hereditary optic neuropathy:
    Fight for Sight and Thomas Pocklington Trust are jointly funding Dr Patrick Yu Wai Man at the University of Cambridge. His research will make use of functional MRI to get high-resolution “real time” images of the visual pathways from the eye all the way back to the vision centres in the brain. Researchers will map out the chronological changes that occur along those pathways and in the brain after the onset of vision loss in individuals with Leber hereditary optic neuropathy (LHON). The researchers will explore whether functional MRI could prove useful as an assessment tool in future treatment trials. The knowledge gained will also help provide more accurate counselling to patients with LHON.

    Corneal and external eye conditions:
    Fight for Sight has funded Dr Mohammed Al-Aqaba from The University of Nottingham. A healthy ocular surface relies on stem cells replenishing old and damaged cells. The research team have discovered novel receptors which could play a pivotal role in the maintenance of this process. The aim of this research is to characterise the structure of these novel receptors which play a role in the regulation of stem cells and the micro-environment around the cornea. The results could reveal the function of these receptors and their role in the prevention of blindness.

    This latest round of Fight for Sight small grants also includes funding for the following projects:
    · Dr Maryse Bailly – funded in partnership with British Thyroid Foundation - A novel pathway regulating adipogenesis in Thyroid Eye Disease: characterization of spontaneous lipogenesis and validation of novel therapeutic targets
    · Dr Lee Mcilreavy – funded in partnership with Nystagmus Network - Diagnosing infantile nystagmus: a novel eye tracking approach
    · Dr Helen Griffiths – funded in partnership with Nystagmus Network - Nystagmus Stabilisation with Virtual Reality Technology
    · Dr Greg Elder – funded in partnership with Thomas Pocklington Trust and Esme’s Umbrella- Visual hallucinations in Charles Bonnet Syndrome: a neuroimaging comparison study with non-hallucinating control individuals
    · Miss Swan Kang – funded in partnership with Thyroid Eye Disease Charitable Trust - Characterisation of anterior segment vasculature in thyroid eye disease using optical coherence tomography angiography

    The next Fight for Sight small grants round opens for applications in May 2018 – keep an eye on the Fight for Sight web site for details: https://www.fightforsight.org.uk/apply-for-funding/

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  • IGA wins commendation at Ophthalmology Awards 2017

    The IGA together with Princess Alexander Eye Pavilion, NHS Lothian receives a commendation for a local patient-led support group for Scotland aimed at reaching out to patients to improve awareness of glaucoma in the community.

    ‘Glaucoma Support Edinburgh’ was formed by a group of patients to address several unmet needs as the NHS now believe patients should take responsibility for their own health, and a support group/forum where patients can build their knowledge is an aid to this goal. The initiative began by recruiting a small group of patients, representatives from the International Glaucoma Association (IGA) and glaucoma specialists from the Princess Alexandra Eye Pavilion, to form a project steering committee.

    Their aim was to establish a local patient-led support group for Scotland with its own identity, but affiliated to the IGA, with the aim of reaching out to patients and improve awareness of glaucoma in the community.

    A website was developed to provide patients with information on meetings and events which is now used as a local awareness/information site. The culture of ‘patients supporting patients’ has led to growth in the number of patients engaging with and accessing the support provided. The group has relieved pressure on the NHS services where there is little extra funding for patient education.

    Judges’ comments:
    “This entry showcased ‘excellent results’ and fulfils the unmet need that exists in some ophthalmology units. The judges found it interesting and demonstrated clear innovation by being patient led – overall it was a good use of patient support groups and patient ownership.”

    For more information about the 2017 winners, click here

    About the awards

    The Ophthalmology Honours recognise and celebrate the outstanding work being carried out by multi-disciplinary teams in ophthalmology throughout the UK. The awards identify exceptional initiatives that demonstrate clinical excellence and innovation in ophthalmology, and recognise exceptional individuals who improve the quality of care provided to patients and the patient experience. Funded and facilitated by Bayer, the awards are judged by a multi-disciplinary panel of experts in ophthalmology care and the decision-making process is wholly independent of Bayer.

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  • Delayed glaucoma appointments: IGA guidance

    Hospital eye clinics across the UK have never been so busy. Increasing numbers of our members are facing delayed or cancelled appointments, which is understandably causing a good deal of worry, so we have put this guidance together to help anyone having problems with appointments. It is aimed at people new to the system as well as those familiar with eye clinics.

    • Hospitals each have their own way of booking appointments, so when you go, find out how their process works. It may be possible to book the next appointment after being seen in clinic, or you may have to wait for a letter to notify you of your next appointment, or you may be asked to ring the hospital at a specified date, or to book online. You are entitled to receive any communications from the hospital or GP in a format that is accessible to you, so if you have a degree of sight loss, you may want to ask for any letters to be sent in large print etc., and to ask at the clinic that they make a note of this on your record.
    • Make a note of the name of your consultant or doctor, the time and place of your next visit, what will happen at the next appointment and who you will see, and whether you will need to avoid driving to the appointment due to the types of test or treatment (for example you may be given dilating or anaesthetic eye drops).
    • At the end of your appointment, ask the consultant when you should next attend, and to tell you the maximum time between appointments (so for example “ideally attend in six months but not longer than nine months”). This will then help you to gauge the urgency of the appointment and contact the hospital if you are approaching the deadline without a booking. You will then be able to quote the doctor’s recommendation when calling for an appointment.
    • Experience tells us that you will need to be both persistent and politely assertive. Once you’ve been put through to the right person, we advise you tell them that you would prefer to stay on the line to wait for an appointment time, rather than them calling you back. Politely stress the importance of the appointment.
    • If you specifically need to see your consultant at the appointment – for example if you have received conflicting information or if you need to discuss glaucoma issues which are troubling you - ask specifically to see the glaucoma consultant at this appointment.
    • Appointment intervals vary depending on how your glaucoma is responding to treatment. If your glaucoma is stable, ongoing monitoring is usually every six months to a year, and an annual visual field test is also fairly standard, but be advised by your ophthalmologist as to when you should next attend. The National Council for Clinical Excellence – NICE –  issued new glaucoma guidelines in November 2017, and these give details of standard treatment schedules. The guidelines can be found online at https://www.nice.org.uk/guidance/ng81/chapter/Recommendations#standard-practice-for-all-assessments  But please remember that this is a general guide: everyone’s circumstances are different, so please do not worry if your doctor calls you back more or less frequently than the guidelines suggest.

    Who to contact if you have problems with appointments

    If your appointment is cancelled, if you are given a date later than the one recommended by your eye doctor, or if you are concerned about your glaucoma, we recommend you try these contacts:

    1. Call the central appointments department if there is one; if not call the main hospital number and ask to be put through to the ‘eye secretary’.
    2. If you are still having difficulties getting a suitable appointment, ask to speak to your consultant’s secretary. Give the name of your consultant, and tell the secretary what your consultant said about when you should be seen.
    3. If you are still having difficulties, an Eye Clinic Liaison Officer (ECLO) may be able to help. An increasing number of hospitals now have ECLOs, who work closely with eye clinic staff and whose role is to give extra support to patients about all aspects of eye health care and sight loss. In some clinics ECLOs may be known as Sight Loss Advisors, or in Scotland as Vision Support Officers. Some ECLOs use appointment systems to see patients and others use an ad hoc drop in system; many can also provide help over the phone. It is worth asking for the ECLOs contact details at your next appointment, but they can also be contacted by calling the hospital’s main number and asking to speak to the Eye Clinic Liaison Officer.
    4. If you still have problems, try the hospital’s Patient Advice and Liaison Service (PALS).

    Every hospital trust should have a PALS service that provides impartial advice and assistance in answering questions and resolving concerns that patients, their relatives, friends and carers might have accessing the NHS services. The service can be contacted via the main hospital switchboard, or online via NHS choices or a general internet search for ‘PALS’. There should be PALS leaflets available from reception, and many hospitals also have staffed PALS offices on site, so you may be able to drop in and see someone in person.

    1. If you have tried all these routes without luck, you may need to consider making a formal complaint.

    The PALS service will be able to tell you how to complain to the hospital.

    To complain about opticians, GPs or other primary care providers, write to NHS England,
    PO Box 16738, Redditch B97 9PT, email england.contactus@nhs.net, putting ‘For the attention of the complaints team’ in the subject line; or telephone: 0300 311 22 33.

    Some IGA members have also raised the issue of capacity in eye health care with their MP.

    Remember, you can always call our Glaucoma Helpline on 01233 64 81 70 for advice, support and information.

    The IGA is the charity for people affected by glaucoma. www.glaucoma-association.com

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  • IGA partners with Hospital Pharmacy Europe to increase awareness about glaucoma eye drops

    Hospital Pharmacy Europe (HPE) and the International Glaucoma Association (IGA) are delighted to announce their partnership for 2017. The IGA will be attending the 2017 HPE LIVE conference, taking place on 21 November at Olympia London, where we will meet with hospital pharmacy teams from across the UK. The HPE LIVE team have this year worked hard to grow their partnership with key organisations involved with pharmacy and given the work that the we do, for example #DropsAndYou and our involvement with hospital pharmacy teams, it was an obvious choice to partner up!

    The HPE LIVE conference is an important date in the calendar for hospital pharmacists. The one day, free-to-attend event provides the chance to take a break from work and gain high quality, clinical updates from a panel of experts. With five streams of presentations and talks on offer, plus a Poster Zone where attendees can showcase their innovative projects and research, a Demo Zone, and exhibition, this is an event not-to-be-missed.

    We would urge all hospital pharmacists, dispensers and technicians to join us on 21 November at the event. You can book your free place here. (please hyperlink to: https://www.tfaforms.com/369247?tfa_29=IGA)

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  • The IGA welcomes new NICE glaucoma guideline

    The IGA welcomes the publication of the revised NICE glaucoma guideline. This provides clear referral criteria so that people are monitored in the setting which is most appropriate to them. Many can be managed by community optometrists with the relevant training, which is often more convenient. This lessens the number of people with a low risk of developing glaucoma, being sent to hospitals, which are often over-stretched and struggling to cope with the demand on their services”.

    https://www.nice.org.uk/news/article/people-at-a-low-risk-of-developing-glaucoma-can-avoid-unnecessary-referral-says-nice

     

     

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  • European Glaucoma Society

    Guess who’s going to be the next President?

     

    Our very own Professor for glaucoma, David (Ted) Garway-Heath will be taking the reins as the next President of the EGS from January 2018.

    Currently as Vice President, Ted’s work is focused on establishing outcomes to evaluate care quality across Europe, harmonizing ophthalmology training, and mentoring the younger generation of glaucoma specialists who will be taking the society forward.

    In addition to his clinical work, Ted leads research in visual assessment and imaging at the Biomedical Research Centre for Ophthalmology of the UK National Institute for Health Research (NIHR). He is also an NHIR Senior Investigator, a position awarded in recognition of his contribution to patient and people-based research.

    On his latest achievement, our professor said: "I will build on the current strong and innovative leadership in pursuit of the patient-focused EGS vision to promote the best possible well-being and minimal glaucoma-induced visual disability in individuals with glaucoma."

    Everyone here at the IGA wishes Ted all the best in his new role next year, and we’re sure he’ll be a great success!

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  • National Eye Health Week Event 22nd September 2017

    Nutrition and Sight Loss

    United Reform Church

    30 Fisherton Street

    Salisbury SP2 7RG

    Friday 22nd September 2017

    10.00am to 1.00pm

     

    Promoting the importance of nutrition, lifestyle and well being on eye health.

    Programme includes exhibitions and interactive displays, presentations and cooking demonstrations.

    Supported by Salisbury NHS Foundation Trust, International Glaucoma Association, RNIB, Macular Society, WSUN and many more.

    For further details please contact Debbie Furnell at Social Barriers Solutions by email on socialbarrierssolutions@gmail.com or by calling on 07719 37 57 76

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  • The IGA is looking for a new Treasurer to join the Board of Trustees

    The IGA is looking for a new Hon. Treasurer to replace Alan Vaughan, who retires from the role in March 2018.

    We are seeking someone who shares our commitment to improving the lives and wellbeing of people living with glaucoma, who is a good communicator and can bring strong finance skills and strategic awareness to the Board.

    The role is not paid, but all reasonable expenses will be met, and support and training is available. You can download full details and an application form here

    At this stage there is no formal closing date, but we hope to have a reasonable handover period so would welcome early applications.

    If you would like an informal discussion about the role please contact our CEO Karen Osborn on 01233 64 81 72 or email k.osborn@iga.org.uk, or Alan Vaughan at alanvaughan623@gmail.com

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  • Glaucoma patients representative needed to help shape NHS research

    A patient or member of the public from Oxfordshire, Buckinghamshire (including Milton Keynes) or Berkshire is being sought to help shape NHS research in the Thames Valley through the NIHR Clinical Research Network Thames Valley and South Midlands, which is part of the NHS.

    A brief article about the role is below and full details are available at this link:

    https://www.nihr.ac.uk/news/patient-and-public-representative-needed-to-help-shape-nhs-research/6460

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  • National Glaucoma Awareness Week 2017 New Research Shows Lack of Awareness of the Need for Regular Eye Pressure Checks

    9 June 2017

    The International Glaucoma Association (IGA) reveals new research showing lack of awareness of the need to have regular eye pressure checks, as it launches its ‘Pressure checked? #GetEyeWise’ campaign for National Glaucoma Awareness Week, from 12-18 June.

    In August 2016 a research team from City, University of London, led by Professor David Crabb, took a purpose-built healthcare Pop-Up into shopping centres across England. On some days the “Feeling The Pressure” Pop-Up offered free blood pressure and eye pressure checks to shoppers and on other days it just offered free eye pressure checks alone.

    Some initial results from the research were recently presented at the European Academy of Optometry and Optics (EAOO) meeting in Barcelona (May 2017).

    The researchers found people had far greater awareness of the need to have their blood pressure tested compared to having their eye pressure checked.  Significantly more people engaged with the Pop-Up on days when both blood and eye pressure checks were offered (60 per cent of all those tested) compared to the days when just eye pressure checks alone were offered (40 per cent of the total tested).

    Researchers also asked shoppers what they knew about blood pressure and eye pressure before being tested. In total 71 per cent of shoppers had a good understanding of blood pressure but only 19 per cent knew anything at all about eye pressure.

    “These results show a staggering lack of understanding and awareness about eye pressure in the general public”, said Laura Edwards, the research optometrist who tested more than 700 people during a marathon 16 days of testing.

    Professor Crabb added, “As we know, eye pressure is one of the biggest risk factors for glaucoma. People generally get the idea that high blood pressure is a risk factor for heart disease and it’s a good thing to check it now and then. This is unsurprising because it has been a much repeated public health message over the years. Similarly we need to educate the public that there are parallels with eye pressure being a risk factor for potentially losing your sight. We also need to make sure people understand it is something that can be easily checked and something they ought to ask for when they next visit their optometrist or eye care professional”

    Pressure checked? #GetEyeWise’

    There are an estimated 64 million people with glaucoma worldwide and an estimated 600,000 people living with the condition in the UK today, half of whom are as yet undiagnosed.   Raised eye pressure can sometimes indicate glaucoma and in fact is the only modifiable risk factor for glaucoma, so this year’s campaign is to educate people about the importance of eye pressure as part of a regular eye health check. If detected early, glaucoma can be managed and useful sight can usually be maintained throughout life.

    Karen Osborn, Chief Executive of the IGA, comments: “The research clearly showed that people are quite familiar with getting a blood pressure check, but are far less aware of the need for regular eye pressure checks. It is shocking that only one in five people in all of the locations visited knew about eye pressure.  If pressure is too high it can lead to irreversible damage to the optic nerve leading to loss of vision. Glaucoma is known as the silent thief of sight for a good reason, as the brain fills in the missing parts of vision and it isn’t until there is significant sight loss that a person thinks to visit an optometrist who can help to detect what is happening.  A significant amount of vision can be lost, and once lost it cannot be recovered.  We hope this year’s campaign will encourage eye pressure checks at least every two years and for over 40s every 1-2 years.”

    Karen Osborn podcast highlighting the research findings.

    What is Glaucoma?
    Glaucoma is a group of eye conditions in which the main nerve to the eye (the optic nerve) is damaged where it leaves the eye. This nerve carries information about what is being seen from the eye to the brain and as it becomes damaged vision is lost.

    • Glaucoma is more common in people over the age of 40.
    • There are often no early symptoms of glaucoma
    • Symptoms of advanced glaucoma include missing, patchy vision and even serious loss of vision
    • If left untreated glaucoma can lead to serious loss of vision, with up to 40% of sight being permanently lost before the effects are noticed
    • Most people with glaucoma will be safe to drive for many years, but it important to alert the DVLA to the condition if advised by an ophthalmologist.

    Glaucoma eye tests
    The IGA believes that everyone should have regular eye health checks, at least every two years (or every 1-2 years for over 40s). Glaucoma tests are quick, simple and convenient.  A visit to your local high-street optician is all that is needed to see if you are at risk of glaucoma. There are three simple tests which include:

    1. Looking at the appearance of the main nerve in the eye, called the optic nerve
    2. Measuring the pressure in the eye, often referred to as the air puff test
    3. Checking the field of vision.  In Scotland there is a fourth test which measures the corneal thickness

    -ENDS-

    Notes for editors:

    The results of this research were first presented at: European Academy of Optometry and Optics (EAOO) Meeting in Barcelona 14 May 2017.

    SCREENING FOR ELEVATED INTRAOCULAR PRESSURE (IOP) IN A SHOPPING CENTRE POP-UP USING ICARE TONOMETRY.

    Edwards et al

    This project is supported by an IGA/College of Optometrists Award (which is funded by the IGA and administered by the IGA in conjunction with the College of Optometrists) and by an EAME regional funding grant from Allergan.

    Case Studies Available for Interview:

    Georgie Morrell is a 30 year old comedian who was diagnosed with juvenile arthritis at three years old, which led to uveitis (inflammation of the eye) and glaucoma.  She has had various treatments and surgeries over the last 27 years.  She lost the sight in her left eye and was blind in her right eye for a year when she was 21, although she has since regained some sight in that eye.  Georgie’s sight problems have informed her career as a writer and comedian, so much so that she wrote a stand up routine called ‘A Poke in the Eye’ about her experience.

    Hayley Burke is a 44 year old Family Support Practitioner at Ty Hafan Children’s Hospice in South Wales.  Hayley’s job involves driving round south west and mid-Wales to visit the families of children with terminal illness, so when Hayley was diagnosed with glaucoma at the age of 39, she was worried about whether she would be able to continue driving for her job.

    Marilyn Jackson is a 63 year old humanist celebrant, based in Edinburgh.  She conducts non-religious weddings, baby naming ceremonies and funerals all across the east of Scotland, so when she discovered she had glaucoma she was worried how this would impact on her job.

    About the International Glaucoma Association:

    1. The International Glaucoma Association (IGA) is the charity for people with glaucoma. Its mission is to raise awareness of glaucoma, promote research related to early diagnosis and treatment, and to provide support to patients and all those who care for them. For more information, please visit: www.glaucoma-association.com
    2. Set up in 1974, it is the oldest patient based glaucoma association in the world and it is a registered charity in England and Wales, and also in Scotland
    3. As part of its support services, the IGA operates the Sightline (telephone helpline) and provides free information on any aspect of glaucoma.
    4. For more information about glaucoma, contact the International Glaucoma Association (IGA) Sightline on 01233 64 81 70 (Monday to Friday, 9.30am–5.00pm).
    5. In England, Wales and Northern Ireland close relatives of people with glaucoma who are aged 40 plus can have a sight test and examination by an optometrist which is paid for by the NHS, and everyone aged 60 and over is entitled to free testing In Scotland, the NHS will pay for glaucoma examinations offered by optometrists, regardless of age.

    For further information or, please contact: Annabel Hillary, 07884 430862, annabel@prwhenyouneedit.co.uk

    or Mary-Jane Greenhalgh, 07866 722051, maryjane@prwhenyouneedit.co.uk

    Karen Brewer, Head of Communications on 01233 64 81 69 or email marketing@iga.org.uk

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