IGA News Spring 2018 - Patron: Dame Maggie Smith - International Glaucoma Association
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IGA News
Spring 2018
Patron: Dame Maggie Smith
Contents Letter from the editor Page 1 Letters, emails and comments Page 3 News Page 4 Talking glaucoma Page 17 Research recruitment Page 30 Research grants Page 31 Sightline Page 32 Experience Page 36 Awareness Page 38 Fundraising Page 40 A day in the life... Page 41 Support groups Page 44 INTERNATIONAL GLAUCOMA ASSOCIATION Woodcote House,15 Highpoint Business Village Henwood, Ashford, Kent TN24 8DH Sightline: 01233 64 81 70 Administration: 01233 64 81 64 Email: info@iga.org.uk Website: www.glaucoma-association.com Editor: Karen Brewer Sub-editor: Tracey Fabre Design/artwork: Yes Design Printed by: Fuller Davies Ltd Charity registered in England & Wales No. 274681, in Scotland No. SC041550 Cover image: Dry Eye Syndrome
Letter from the editor
a wider audience, through our
partnership with Specsavers and
Vision Express. We are delighted
that Specsavers has increased the
understanding of retail staff by
developing a glaucoma training
module with the support of IGA.
This will lead to all 1200 stores
having at least one member of staff
with special glaucoma training.
Vision Express has worked hard to
stress the importance of eye health
and driver safety. Late last year
these efforts were rewarded by an
announcement from Government
Welcome to the Spring issue that it will work with the DVLA to
of the IGA News. I hope that the notify people about the importance
temperature has improved since of eye health checks as part of the
our attendance at a professional licence renewal process. See page 6.
exhibition in Birmingham, in the
midst of snowstorms and Many professional bodies are
temperatures which led to the developing strategies to take account
Birmingham canal behind me of technological change and the need
freezing over. to develop services and processes to
meet the needs of a growing elderly
This edition brings you news of population. The General Optical
how artificial intelligence is impacting Council is one of the organisations
on glaucoma diagnosis. The pace of that Members’ have helped. More
technology change is breath-taking, information can be found on page 8.
but I am certain that there will
always be a need for human The National Eye Health Survey
oversight and communication in event, featured on page 10, is an
all health areas. ambitious research project and
I am pleased that Karen Osborn
Our work around eye drop has provided a short summary
education and driving is reaching of its aims.
News Spring 2018 1
Letter from the editor Congratulations are extended to our IGA Professor, David Garway-Heath who is now also President of the European Glaucoma Society and to our trustee Nick Strouthidis who has been appointed Medical Director of Moorfields. We are also delighted that the work of our Edinburgh Support Group was recognised at a national Ophthalmology Awards event. We do work hard to represent the views of people with glaucoma throughout all walks of life, via Government consultations, in our work with Departments like the DVLA, through optometrists, pharmacists and regulatory bodies. In addition to our advocacy work we raise awareness of glaucoma via World Glaucoma Week in March and National Glaucoma Awareness Week in June. More details of our work in these areas is included on pages 38-39. Last, but by no means least, I am always looking out for more of your stories to relay in the magazine. So please do get in touch if you would like to write about your experience of living with glaucoma. Karen Brewer Editor 2 News Spring 2018
Letters, emails and comments
To Michael Ellwood, thank you for sharing your experience of living with
glaucoma. So much of what you wrote resonated with me. The importance
of having eye tests early cannot be stressed enough.
My mother had the condition and my glaucoma was spotted at my first ever eye
test at the age of 40. In the 25 years since then pressures have been maintained
at a stable level apart from one episode, misdiagnosed as optic neuritis, which left
me with scotoma in my right eye. I am unaware of this when both eyes are open
as my left eye compensates for it.
Sian Lerwill
I received a letter from a member who was horrified about the latest
NICE guidance (IGA, Winter 2018). As someone with normal tension glaucoma,
she was concerned about the increase in intraocular pressure from 21mmHG
to 25mmHG, and felt that the IGA should have expressed concern about this
to NICE. I have responded to our member to reassure her that we did provide
a consultation response to NICE which agreed with the view of the NICE
committee that glaucoma referrals should not be based on IOP alone. There
needs to be at least one further test, such as the visual field or the image of
the optic nerve.
We do work with optical chains and a range of partners to encourage everyone
to have a full eye health check including measuring the pressure
in the eye, checking the field of vision and looking at the appearance of the optic
nerve. Normal tension glaucoma would be picked up through these three tests
and individuals would be referred on.
Around a fifth of our members have normal tension glaucoma and I wanted to
reassure our member and anyone else concerned, that we would not support
any national clinical guidance if we felt it put people with glaucoma at risk.
Karen Brewer
Please feel free to write to me:
K.brewer@iga.org.uk or call on 01233 64 81 64
I will consider all thoughts and comments, and come back to you
News Spring 2018 3
News
Editor’s introduction:
Many of you may have heard or read about the Google Deep Mind announcement
about how artificial intelligence can help detect eye conditions. The announcement
was made the day before a UK BioBank meeting (See IGA News Autumn 2015 for
more information) where a presentation was given by the researchers involved in
this project. The pace of machine learning is breath-taking. I do hope to bring you
more news about this in future copies of IGA News. The article below has been
reproduced with the permission of the Financial Times.
Retinal scans used to train an algorithm in
‘promising’ partnership with the NHS
Google’s DeepMind has developed artificial intelligence (AI) to diagnose diseases
by analysing medical images, in what could be the first significant application of AI
in healthcare.
London-based DeepMind has crunched data from thousands of retinal scans to train
an AI algorithm to detect signs of eye disease more quickly and efficiently than
human specialists. Findings have been submitted to a medical journal by the company
after “promising signs” from a two-year partnership with the National Health Service
and London’s Moorfields Eye Hospital, one of the best-known in the world for
ophthalmology. The technology could enter clinical trials in a few years if results pass
a peer review by academics.
“In specific areas like medical imaging, you can see we’re going to make really tremendous
progress in the next couple of years with artificial intelligence,” Dominic King, clinical
lead for DeepMind Health, told the Financial Times. “Machine learning could have a very
important role picking up things more sensitively and specifically than currently happens.”
DeepMind’s algorithm has been trained using anonymised 3D
retinal scans provided by Moorfields and painstakingly labelled for
signs of disease by doctors. The company has now begun
discussing clinical trials with hospitals including Moorfields.
Because the images provide rich data with millions of pixels of
information, the algorithm can learn to analyse them for signs of
the three biggest serious eye diseases: glaucoma,
diabetic retinopathy and age-related macular degeneration.
4 News Spring 2018
News
Professor Sir Tee Khaw, director of research
and development at Moorfields, said: “I am
optimistic that what we learn from this research
will benefit people around the world and help put
an end to avoidable sight loss. We hope to publish
our findings in a peer reviewed journal within the
next year.”
The artificial intelligence is “generalised,”
according to Dr King, meaning it can be applied
to other kinds of images. DeepMind said the next
stage would involve training the algorithm to
analyse radiotherapy scans, through a partnership
with University College London Hospitals and
mammograms, in partnership with Imperial
College London.
Labelling images for head and neck cancer “is a five or six-hour job, usually doctors sit
and do it after work,” said one consultant labelling scans at Google’s offices. “The artificial
intelligence has happened at the same time as the [NHS] is under so much pressure.”
As health systems creak with the strain of growing and ageing populations, hospitals
around the world have begun to discuss whether artificial intelligence can reduce the
burden of repetitive work. DeepMind employs 100 people in its health team, compared
with just 10 three years ago.
The relationship between big technology companies and hospitals is sensitive, however.
Last year, the UK’s data protection watchdog ruled that an NHS trust broke the law by
giving DeepMind access to the medical records of 1.6m patients.
The ruling related to a trial of DeepMind’s Streams medical diagnosis app, which does
not use AI but analyses data and sends nurses and doctors alerts when a patient’s
readings look abnormal.
The company has since set up a research unit focused on the ethical and social
implications of the AI it is creating.
Dr King said. “(Artificial intelligence) needs to be implemented and evaluated I would say
as rigorously as a new pharmaceutical medical device so you have evidence that then
allows you to scale up across a health system.”
News Spring 2018 5
News
Government to remind drivers about importance
of eye health in licence renewal letters, following
Vision Express campaign
Editor’s introduction:
The IGA has supported the requirement for people to have an eye health check
as part of the 10-year licence renewal. The Vision Express campaign is a
significant breakthrough that could help to detect people with early glaucoma
long before symptoms are obvious and vision loss is advanced.
www.mynewsdesk.com/uk/vision-express/pressreleases/government-to-remind-drivers-ab
out-importance-of-eye-health-in-licence-renewal-letters-following-vision-express-campaig
n-2312603
David Linden MP having a screening at the OCT machine,
at a Vision Express event in Westminster
6 News Spring 2018
News
The Government has announced that it plans to work with the DVLA to include an eye
test reminder when motorists renew their photocard driving licence – in a milestone
move announced in Parliament on 1 December.
Minister for Transport Legislation and Maritime, Mr John Hayes, said “We could do
something very practical: we could get the Driver and Vehicle Licensing Agency to remind
drivers of the importance of good eyesight in the letter that it sends to them when their
licences are renewed. We will certainly be doing that.”
The commitment is a breakthrough in Vision Express’ two-year-long campaign to
encourage Government to put eye health higher on the road safety agenda.
The optician held awareness-raising events at
Westminster and Holyrood during Road Safety
We could do something Week (20-26 November 2017) and welcomed
very practical: we could over 50 MPs and MSPs, including Health Minister
get the Driver and Vehicle Philip Dunne and Scottish Minister for Transport
Licensing Agency to and the Islands, Humza Yousaf.
remind drivers of the
A driving simulator demonstrated to
importance of good
parliamentarians how conditions such as
eyesight in the letter that glaucoma – one of the biggest causes of
it sends to them when preventable vision loss in the world – can
their licences are renewed gradually steal up to 40 per cent of sight
without it being noticed.
Jonathan Lawson,Vision Express CEO, commented: “This is a huge coup for our ‘Eye Tests
Save Lives’ campaign and rewards our efforts over the past two years, calling for more
awareness among drivers of how dangerous it is to get behind the wheel without having a
regular eye test.
News Spring 2018 7
News
GOC Chair calls for more collaboration between
system leaders in future eye and vision services
Editor’s introduction:
The General Optical Council continues to scope out its role in regulating the
optical service industry. A further consultation has taken place, ending in
March, to gain feedback on its main goals for the forthcoming years. The IGA
will ensure that it represents members’ views in our consultation response and
are thankful to the involvement of members last year, who agreed to be involved
in GOC focus group. There is a summary of the Education Review Strategy, the
process which has been followed and the next steps on the GOC website:
www.optical.org/en/Education/education-strategic-review/
supplementary-reading.cfm
8 Feb 2018
Gareth Hadley, Chair of the General Optical Council (GOC), called for more
collaboration and cooperation between the wider health system and the optical sector.
Gareth’s call follows the regulator publishing a summary of its recent discussions about
the potential future direction of eye health and vision services in the UK.
Following a health system leaders’ roundtable meeting, held by the GOC in November
as part of its Education Strategic Review, the new
document summarises key themes from the
Our role at the GOC is to meeting. These include the importance of
ensure new practitioners developing increased collaboration, cooperation
are equipped to practise and integration between eye health and vision
services and wider health systems and equipping
safely and competently in
future optical professionals with the skills and
this evolving landscape knowledge to practise safely and competently in
new and different ways.
Gareth said: “We know that throughout the UK more optical services are being
delivered in new and innovative ways, including in a variety of community settings.
Our role at the GOC is to ensure new practitioners are equipped to practise safely and
competently in this evolving landscape. That is why our Education Strategic Review is
8 News Spring 2018News such a key priority for us over the next two years. “But it is also vital that the optical and wider health sector pursue a joined up and collaborative approach to ensure the delivery of safe, accessible and cost effective eye health and vision services that patients have confidence in and can navigate easily.” To read the summary statement please visit: www.optical.org/en/Education/education-strategic-review/supplementary-reading.cfm News Spring 2018 9
News
UK National Eye Health Survey, Karen Osborn
Back in January we were delighted to be invited to a Stakeholders Design and
Development Day for the UK National Eye Health Survey (UKNEHS –
apologies for yet another acronym!).
The Survey is a hugely ambitious research project that aims to determine the
prevalence and causes of vision impairment in people aged 50+, by screening
25,000 people across the UK.
Given the prevalence of eye conditions and the resources spent on treating them, it
seems incredible that this data doesn’t already exist, but it doesn’t, and this means of
course that we have
no benchmark for
other studies.
Mike Bowen, Director SCOTLAND
of Research at the
Establishing how
College of Optometrists
many people with
glaucoma and ocular
and a member of the hypertension in
UKNEHS Programme
Scotland today?
Management Group told
us about an excellent
recent study into the
lives of people living with
glaucoma and dementia.
The study yielded
some valuable and
WALES
interesting results, but
(POWYS)
An audit of how
the researchers were
the pharmacist can
unable to compare their
help people
with glaucoma
findings with a baseline
population of similar
people living with glaucoma LONDON
but not dementia - because this data simply hasn’t
(NORTH WEST)
A pilot study
been captured at scale. Put simply, if we knew in more detail working with
what difference the dementia makes, we could plan services that
pharmacists
address these issues much more effectively.
10 News Spring 2018News
The Survey aims to sample a random selection of UK households, which will be sent an
information pack and invited to participate. Those agreeing will be visited at home by
researchers, who will complete a health (and possibly lifestyle) questionnaire, and then a
visual acuity test will be done and a photo taken of the back of the eye. If any vision
problems are found during the survey, the participants will be referred in to appropriate
health services.
Professor Rupert Bourne, a member of the UKNEHS Executive
Board, told us that a study in the US using similar methods had
revealed that of those people found to have glaucoma, 75 per
cent were previously undiagnosed. The overall cost is expected
to be in the region of £10million, and it is hoped that a Phase I
pilot will start in late 2018.
Karen Osborn
Chief Executive
News Spring 2018 11News David Garway-Heath, European Glaucoma Society President (EGS) The IGA’s Professor for glaucoma, David (Ted) Garway-Heath has taken over the reins as the President of the EGS. His 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 NIHR 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." We shall bring you news of Ted’s achievements over the next few issues. 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 12 News Spring 2018
News
Editor’s introduction:
We are delighted that our trustee, Nick Strouthidis has been appointed medical
director at Moorfields. Nick is often called on for his expert advice in relation
to concerns that you may have regarding glaucoma and your treatment.
He was also instrumental in forming our working relationship with the DVLA,
visiting the Swansea offices with Russell Young, CEO and myself to present your
concerns in 2013.
Moorfields Eye Hospital NHS Foundation Trust has appointed Nick Strouthidis to the
post of medical director. Currently a consultant ophthalmologist in Moorfields’ glaucoma
service and the glaucoma service director, Nick has worked for the Trust since 2002.
Nick began his career at Moorfields as a research fellow to the glaucoma research unit
and completed most of his training at Moorfields as both a registrar and a clinical
glaucoma fellow. His clinical interests cover all aspects of adult glaucoma, particularly
new surgical treatments. Alongside corneal consultant colleague Mark Wilkins, he runs
the UK’s first integrated clinic for patients undergoing keratoprostheses, a surgical
procedure to replace a diseased cornea with an artificial cornea.
Nick was appointed to this pivotal role following a rigorous recruitment process,
involving external stakeholders.
Nick Strouthidis said: “It is an honour to take on the role of medical director at
Moorfields Eye Hospital NHS Foundation Trust, an organisation that has shaped my
professional life. I will work hard with our incredible staff to ensure we succeed in
delivering our five-year strategy to work with patients and partners to discover, develop
and deliver the best eye care.”The search for a new medical director began in response
to outgoing medical director Declan Flanagan stepping down after eight years to focus
on his clinical practice. Declan will continue to serve as medical director until August,
when Nick takes up the post. After that, Declan will remain with the trust as a
consultant ophthalmologist in the medical retina service, where he specialises in the
treatment of retinal diseases.
David Probert, chief executive of Moorfields Hospital NHS Foundation Trust said:
“I look forward to Nick joining the executive team at Moorfields and congratulate him on
his appointment. I am incredibly grateful for Declan’s exceptional leadership throughout
his time as medical director.”
Declan Flanagan said: “Spending the past eight years as Moorfields’ medical director has
been a privilege. I am proud that, despite growing demand for our services, our clinical
outcomes continue to be among the best in the world.”
News Spring 2018 13News IGA wins commendation at Ophthalmology Awards 2017 The IGA together with Princess Alexander Eye Pavilion, NHS Lothian received 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 14 News Spring 2018
News
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.
Connecting for Vision Patient Day, Birmingham
News Spring 2018 15News
The UK and Eire Glaucoma Society 2018
The next professional annual conference for the
UK and Eire Glaucoma Society takes place in London,
hosted by Professor David Crabb
of City, University of London on 13 and 14 December
This two day event brings ophthalmologists together from across the UK and has recently
welcomed international delegates and attendees. We hope that the event will grow on
2017 which saw 200 delegates, over 30 speakers and 18 industry exhibitors from across
the ophthalmology and the pharmaceutical sector.
The Society (UKEGS) is a national scientific society and a non-profit organisation.
The aims of this society are:
• To establish personal contacts and to promote the exchange of knowledge between
glaucoma specialists and those involved in the management of glaucoma patients in
the UK and Eire.
• To stimulate glaucoma research by bringing together basic scientists and clinicians
involved in glaucoma research, thereby establishing a scientific community with
similar interests, aims and objectives together with a sense of comradeship and
active co-operation.
• To promote an interest in glaucoma as a sub-speciality in trainee ophthalmologists
and those in related occupations.
• To keep contact with other glaucoma societies within and outside the two nations.
• To promote, protect and foster the interests and care of people having or at risk of
developing glaucoma.
The annual conference is not open to the public but we do feature articles in the IGA
News which we feel are of interest to our members.
16 News Spring 2018Talking glaucoma
Editor’s introduction:
The IGA helped with the funding of the following research into the use of a
Glaucoma Patient Passport.
Evaluating the adoption, usability and perception of a
Glaucoma Patient Passport within a Hospital Eye Service
Mr Imad Badran, Dr Salim Khan, Dr Freda Sii
and Professor Peter Shah, 2017
Adherence to glaucoma management
Adherence identified by Oxford Medical Dictionary (2010) is the degree to which a
patient follows medical advice, which includes medication compliance or attending
appointments for courses of therapy. This can affect both glaucoma stability and
continuity of glaucoma care. Glaucoma patients who do not attend their follow up
appointments or take their drugs correctly, or who discontinue treatment altogether play
a major part in visual loss (RNIB, 2007). Figure 1 shows a progressive visual field loss
(darker areas) from 2005 to 2011 for a 67-year-old African-Caribbean female patient who
failed to attend to her glaucoma clinic follow up and who did not take her anti-glaucoma
eye drops regularly (Badran and Shah, 2012).
Figure 1: Glaucoma visual field progression (Badran and Shah 2012).
News Spring 2018 17Talking glaucoma Non-attendance The incidence of non-attendance to pre-scheduled outpatient clinic appointments is widespread within health services worldwide (Murdock and Rodgers, 2005). According to Perron et al, (2010) it affects the patient’s continuity of care resulting in a high financial burden on the health service. It costs the National Health Service (NHS) almost £170 million per year (Geraghty et al, 2008) and results in serious adverse effects on a patients’ health, due to the lack of monitoring of chronic conditions and delays in diagnosis and treatment (Perron et al, 2010). Non-attendance is important for glaucoma patients due to the need for regular and continuous monitoring to prevent further visual loss (Koshy et al, 2008). Data from the literature suggests that patients’ non-attendance was due to: personal reasons, memory lapses, patient’s health and patient’s past experience of hospital care (Perron et al, 2010). Non-adherence to glaucoma treatment There are many barriers preventing effective adherence to glaucoma management, including poor education, lack of motivation, forgetfulness and difficulties with taking the treatment (Lacey et al, 2009; RNIB, 2007). Aronson (2007) mentioned that the traditional barriers to adherence to therapy include the complexity of the regimen (the number of treatments and the frequency of administration) and patients’ failure to understand the importance of adherence. Effective adherence to glaucoma management relies on an exchange of information and good practice between practitioner and patients (Tsai, 2009). Rees et al (2010) discovered that the degree of unintentional non-adherence to glaucoma treatment was associated with the patient having little belief in the necessity of treatment; whereas the degree of intentional non-adherence was associated with concerns about treatment. Furthermore, Wallace et al (2008) found 69 per cent of glaucoma patients did not demonstrate basic knowledge about their condition and its management. Demographically, non-adherence to glaucoma management is greater amongst lower socioeconomic groups (Hoevenaars et al, 2006; Wallace et al, 2008). Depression was also found to be associated positively with poor adherence to glaucoma management (Pappa et al, 2006). Aronson (2007) claimed that poor adherence may in turn arise from poor communication by physicians. Friedman et al (2008) reported that physicians spoke 70 per 18 News Spring 2018
Talking glaucoma cent of the words and asked closed-ended questions, restricting the patient’s contribution during their glaucoma consultation. Glaucoma Passport The Glaucoma Passport is a glaucoma patient’s personal health record, which contains educational aids and provides sources of further information. It allows the patients to keep track of their condition in conjunction with their health care provider, and facilitates earlier intervention if required (Tang et al, 2006). Introducing the Glaucoma Passport to improve the patient’s knowledge about their condition and its management is a challenge. An individual’s personal health record can only be useful if the person understands the importance of maintaining and coordinating health-related documentation and activities with health care providers (Tang et al, 2006). Contents The Glaucoma Passport is an A5 booklet which contains educational information and areas in which the patient record relevant details. 1. Introduction: information on the purpose of the passport and how to use it. 2. Contact details: consultant name, clinic address, consultant’s secretary, support staff contact and emergency contacts. 3. Patient’s eye medical history: the type of glaucoma, the date of glaucoma diagnosis, and other relevant or previous eye health problems. 4. Patient’s medical history: other systemic health problems such as diabetes and high blood pressure (Appendix 1). 5. Patient’s family history: family history of eye problems (Appendix 1). 6. Patient’s eye drops and medication lists: patients record their medication on the medication card provided; this list can be updated on a new card when treatment changes (Appendix 2). 7. Allergies: any allergies experienced. 8. Instructions: shows and explains the correct technique of instilling eye drops, with photos (Appendix 2). News Spring 2018 19
Talking glaucoma Graph 1 Analysis shows that the Glaucoma Passport was useful in both home and clinic setting (Graph 2). Table 1 shows how the patients found it useful at home and Graph 3 shows whether it was brought to the clinic and if it was used when brought to the clinic. Graph 2: Places participants use the Glaucoma Passport. 20 News Spring 2018
Talking glaucoma Table 1: Patients’ attitudes for using the Glaucoma Passport at home Graph 3: Patients’ attitudes for using the Glaucoma Passport at the clinic News Spring 2018 21
Talking glaucoma Data analysis shows a significant improvement in the correct eye drop technique after introducing the Glaucoma Passport. Photo 1: Glaucoma patient using the Glaucoma Passport medication chart Graph 4: Skills: Correct eye drop technique before and after the Glaucoma Passport. 22 News Spring 2018
Talking glaucoma Table 4: Patients’ thoughts regarding the use of the Glaucoma Passport Graph 5: Patients’ attitudes for using the Glaucoma Passport at the clinic News Spring 2018 23
Talking glaucoma Features and preferences in using the Glaucoma Passport Table 4: Patients’ thoughts regarding the use of the Glaucoma Passport Conclusion The main aim of this project was to evaluate the implementation, adoption and the usability of the Glaucoma Passport in a group of glaucoma patients in order to improve their care, promote positive behavioural skills and empower them to take an active role in management of their condition. Indeed, 52 (84 per cent) out of 62 participants adopted the Glaucoma Passport and they continue to use it in a variety of settings after it was introduced to them in our hospital glaucoma clinic. The 'Glaucoma Passport' is a glaucoma patients hand-held personal health record, which contains educational aids and provides sources for further information. According to Somner et al. (2013) a glaucoma personal health record may be useful as an educational tool to enhance patient understanding of glaucoma and improve their adherence to treatment. The patients may not adopt a personal health record if it is not aligned closely with their attitudes, identified educational need, self-management skills and continuity of care (Greenhalgh et al, 2010). Therefore, the introduction of the Glaucoma Passport was 24 News Spring 2018
Talking glaucoma based on an information-motivation-behavioural skills model (Fisher et al, 1996) in order to meet individual patient needs. Gray et al (2012) showed that glaucoma patients who had an individual assessment of health care needs and beliefs have better knowledge and skills to manage their condition than those who had not. By using this model, we achieved a high percentage of patients adopting and using the Glaucoma Passport. Non-adherence to glaucoma management is a major problem across health services worldwide (NICE, 2009). The obstacles to adherence range include poor education, lack of motivation, forgetfulness and concerns about treatment to glaucoma management (Rees et al, 2010; Tsai, 2009; Lacey et al, 2009). The purpose of the passport is to help educate the patients and/or carers on the condition. Our data showed 51.6 per cent of the participants reported the Glaucoma Passport definitely improved and 22.5 per cent mostly improved their knowledge and management of glaucoma. The majority (84 per cent) also found information such as contact numbers and advice provided in the Glaucoma Passport helpful. Conversely, Wallace et al (2008) found that 69 per cent of glaucoma patients did not demonstrate basic knowledge, regarding their disease and its management, due to a lack of a special care pathway. Education: These results may meet one of the broad purposes of introducing the Glaucoma Passport, which is to educate the patients and/or carers about glaucoma. It may be argued that the participants (19 per cent), who are not sure, may already have had advance knowledge prior to the introduction of the passport. Badran and Shah (2012) showed that 26 of their participants (52 per cent) reported that they knew the reason for the consultation. Motivation: The second broad purpose is to motivate glaucoma patients to take an active role in their glaucoma management. One of the obstacles to adherence to glaucoma treatment is best practice in self-management and administering the eye drops correctly. Our data showed 91 per cent of the 62 participants reported that they adopted the drop technique demonstrated in the Glaucoma Passport. This is a significant improvement compared to our departmental audit (Badran and Shah, 2012). Improved communication: The third purpose is to eliminate communication barriers and facilitate continuous communication between patients and health professionals. Friedman et al (2009) reported that doctors spoke 70 per cent of the words and asked closed-ended questions, restricting the patient’s contribution during their glaucoma consultation in an out-patient visit and only a minority of the physicians ever asked patients if the patients had any questions. Aronson (2007) claimed poor communication News Spring 2018 25
Talking glaucoma
by doctors may lead to poor adherence to
Our data showed 91 per treatment. Reduced individual time for each
cent of the 62 participants patient consultation can lead to poor
communication during consultation
reported that they
(Lunnela et al, 2010).
adopted the drop
technique demonstrated Self-confidence: 42 (68 per cent) participants
indicated that the use of the Glaucoma Passport
increased their self-confidence and motivation
to ask questions and discuss their health concerns with their health professionals.
Effective adherence to glaucoma management relies on effective exchange of information
between patients and health professionals (Tsai, 2009). However, 14 (22 per cent)
participants felt that the passport did not give increase their confidence any further. It may
be that they were already discussing their concerns, or that the health professional team
had given them adequate information. One female Caucasian said, “it satisfied me what
they tell me about my case.”
A limitation of the questionnaire is that it did not collect information on whether the use
of the Glaucoma Passport affected the duration of consultation as this project is not a
comparative observational study.
Shared professional and patient responsibility: Lastly, the Glaucoma Passport
aims to share and facilitate continuity of care for a chronic condition. The majority (59
per cent) of the participants felt that it allowed the responsibilities to be shared among
the health professionals. Furthermore, 79 per cent of participants stated that they will
continue using the Glaucoma Passport.
Only 24 (39 per cent) participants reported that their health professionals used their
passport during their consultations. However, this is a small project and the Glaucoma
Passport was only given to 110 glaucoma patients and not to all glaucoma patients in the
department, estimated 3500. Therefore, it was difficult for the doctors to identify which
patient was using the passport, unless they specifically asked the patients.
It has been noted that the Glaucoma Passport is not as well adopted by the African-
Caribbean and minority ethnic groups. These are the groups that are less engaged with
healthcare systems.
Male patients preferred the size of the Glaucoma Passport to be smaller to fit in their
jacket pockets.
26 News Spring 2018Talking glaucoma
One limitation of the Glaucoma Passport is that
This project showed that it does not have the glaucoma clinical
the Glaucoma Passport determinants, such as intraocular pressure, optic
disc parameters and visual field chart. Archer et
played an important role
al (2011) stated that a personal health record
as a useful personal health that provides access to all or most of the
record and engagement tool patients’ clinical information improves adoption
and usability. Patients who have access to their
clinical data on internet access based systems
were found to have better intraocular pressure control and glaucoma management
(Kashiwagi and Tsukahara, 2014).
This project showed that the Glaucoma Passport played an important role as a useful
personal health record and engagement tool. In addition to providing information to the
patients, it may facilitate communication between the patients and the clinical staff, and
engages the patients in the management of their glaucoma. The Glaucoma Passport will
be further evaluated to determine its impact on the continuity of glaucoma care.
Appendix 1
News Spring 2018 27Talking glaucoma Appendix 2: (A) Patient writing his/her medication in the passport (B) Eye drop instillation technique “Professor Peter Shah and team would like to extend their sincere thanks to the IGA for supporting this project fully. The support helped Mr Badran to extend his role as a researcher and Glaucoma Specialist Nurse within Professor Shah's team at University Hospital Birmingham NHS Foundation Trust.” This work was carried out by Professor Peter Shah's team at University Hospitals Birmingham NHS Foundation Trust. 28 News Spring 2018
Talking glaucoma UK Paediatric Glaucoma Society As you may know, one of the ways that the IGA helps children and young people with glaucoma is through our support for the UK Paediatric Glaucoma Society – or UKPGS. This is essentially a fairly loose coalition of paediatric glaucoma specialists from around the world, who share their learning throughout the year but who come together in person at an annual conference – which is where the IGA comes in. We support UKPGS by administering their delegates finances and holding their funds (described in our accounts as ‘Acting as an agent’ for UKPGS) which means they can avoid the cost and work of setting up as a separate charity. As it is, they are a very nimble and un-bureaucratic group, that only functions because of the huge amount of unpaid work put in by their voluntary committee. We salute them! Our CEO Karen and Sightline Manager Helen were delighted to be invited to the 2018 UKPGS Conference in London in January. Karen says “It was energising to be among so many committed and passionate clinicians. I’ve been to some wonderful specialist glaucoma conferences since joining the IGA, but this really brought home the huge complexity of the management of childhood glaucoma, and the fact that the outlook isn’t always good. Presenter after presenter talked about the sheer number of procedures needed by individual children, so many operations compared to adult treatment…” Our Sightline Manager, Helen, loved the medical aspects of the conference. She said “I was honestly in awe of the dedication and responsibility of these ophthalmologists who treat and operate on children. Their attention to detail and the lengths they go to control the glaucoma… it’s incredible. There were 21 studies presented in quick fire sessions from India, Israel, Saudi Arabia, the USA, and all over Europe. New and interesting information I learnt from these studies? First, the cup/disc ratio in children is usually deeper due to the elasticity being greater in children. Next, static perimetry or visual field testing starts from the age of seven or eight years. Then, in children there’s a higher risk of developing glaucoma following a congenital cataract operation: one year post operatively, eight per cent of children will have developed glaucoma and 13 per cent will develop ocular hypertension following the cataract operation.” Karen was struck by the importance of - and the variability in – parent and carer compliance. “Several delegates said that the impact of poverty and deprivation on attendance rates at follow-up was one of the most fundamental factors in clinical success, and anticipation of non-attendance might even affect decisions about News Spring 2018 29
Research recruitment Are you using glaucoma eye drops? If so, please consider taking part in a research study that is being developed in the Vision and Eye Research Unit (VERU), Anglia Ruskin University (Young street campus, Cambridge) We are looking for volunteers with the following characteristics: 1) Aged 40 or over (≥ 40 years old) 2) Glaucoma diagnosis using glaucoma eye drops The study will involve examination of the eyes before and after watching a movie, in order to assess how certain common environmental conditions can affect the eyes. The participants will be also asked to fill out questionnaires regarding their ocular symptoms. Participation requires attending only one day, dates are flexible and the study takes in total around 4.5 hours (including 1.5 hours watching a movie, working with computer/tablet/mobile phone or reading). Refreshments will be provided and we will reimburse £15 to cover travel expenses. Participating (or not participating) in the study will have no effect on the care you receive from your doctor, and you will be free to withdraw from the study at any time, without giving a reason. If you would like to participate, or to find out more, please contact Dr Nery Garcia-Porta. E-mail: nery.garcia-porta@anglia.ac.uk Tel: 01223 69 52 63 30 News Spring 2018
Research grants IGA and Royal College of Ophthalmologists research grant 2018 This research grant is for postgraduate research and is valued up to £100,000. The closing date was 2 February. We will bring you news about successful applicants in future issues. The IGA and Royal College of Nursing research grant 2018 This award aims to facilitate research which support patients during their glaucoma care. It has a value of £25,000. The deadline was 6 April. The IGA and The College of Optometrists This research grant is valued up to £25,000. The closing date is 5 October 2018. Full details of how to apply and the criteria to meet can be found on our website, in the Research section. The IGA and UK and Eire Glaucoma Society (UKEGS) research grant The UK and Eire Glaucoma Society (UKEGS) is a national scientific and not-for-profit organisation, which holds an annual conference for specialists, clinicians and trainees concerned with managing the glaucoma patient. The 2018 annual meeting of the UKEGS will be held in London. The research grant deadline and how to apply will be available on the IGA website, under the Research section. News Spring 2018 31
Sightline Glaucoma and Your Relatives Includes information on: • Will I have to pay to have my eyes checked? • How is glaucoma detected • Does glaucoma run in families? • Ocular hypertension This booklet can be ordered FREE of charge from the website: www.glaucoma-association.com 32 News Spring 2018
Sightline Syndromes and Anomalies Includes information on: • Axenfeld and Reiger syndromes • Sturge-Weber syndrome • Peter's Anomaly This booklet can be ordered FREE of charge from the website: www.glaucoma-association.com News Spring 2018 33
Sightline
Social media activity on Facebook
If you want to get involved with Facebook
you can find us at International Glaucoma
Association and like our page and share our
posts on your own timeline.
34 News Spring 2018Sightline
Social media
activity on Twitter
You can follow us on Twitter
@tweetiga, where you can like,
share and retweet our activity
News Spring 2018 35Experience
Editor’s introduction:
Christine met with Karen Osborn at a recent patient event. We referred
Christine to the RNIB as someone who would be confident about presenting
the patient voice at an All Party Parliamentary Group which is looking into the
capacity of eye care services. The meeting took place in December last year
and here is a summary of her account.
Experience of a patient with glaucoma
and opacification - 5 December 2017
All Party Parliamentary Group
I am Christine Wall a retired accountant, still active in my husband’s business. For five
years I was a lay/patient representative for the Royal College of Ophthalmologists and for
two years Vice chair of the Patient/Lay Committee of the Academy of Medical Royal
Colleges. I have had poor eye sight all my life, two cataract operations, two YAG laser
capsulotomies and have glaucoma.
It is wrong to think of eye problems as afflicting only aged people (not that they don’t
deserve good care). From my recent experience, the issues are:-
1. Eye problems differ from other medical problems, in that when your
eyesight fades or fails, everything about your life is affected detrimentally -
it is very hard/impossible to work, train, drive, use a p.c., read and write and maintain
dignity and independence.
2. Lengthy delays in being seen by a consultant are difficult to accept – in the last year
I had to wait from early December 2016 till the end of May to be diagnosed with
glaucoma and begin treatment despite two optometrists having identified my “dodgy
optic discs.” From my reporting sudden, severe sight reduction to my optometrist
and GP in April, my NHS hospital assessment appointment date was not until 26 June.
3. Since April 2017, NHS tariffs in secondary care are reduced for follow-up rather
than new cases – a change which was introduced without any public or patient
consultation whatsoever, despite the Department of Health’s own ruling that patients
should be involved in health care decisions. This impacts very detrimentally upon
glaucoma patients, such as myself, who need regular monitoring if serious further
damage is to be avoided.
36 News Spring 2018Experience 4. Local GPs have been omitted quite deliberately from the NHS eye-care picture. I sought advice about the worth of costly “extra” eye tests being suggested by the high street optometrist. My senior GP partner informed me in April that he could do nothing to accelerate appointment dates - letters to the local hospital eye clinic are returned unread. 5. The procedure for referrals to the laser clinic is now out-sourced to a commercial firm. I discovered too late that my referral judges me as “routine priority” - yet my sight had deteriorated in very few weeks so that I could not drive, read … – it certainly felt extremely “un-routine” to me. 6. Alternative providers – (“AQPs”) I have experience of being referred to the local private hospital for my cataract operations. While doubtless seen as a method to reduce waiting lists, it impacts upon provision of training for junior opththalmologists since training is not built into AQP contracts. It poses significant difficulties for patients like me, who run into post-operative problems since AQPs are not obliged to provide emergency care to their post-operative patients. 7. National Institute for Clinical Excellence (NICE), General Medical Council (GMC), Royal Colleges depend on clinician involvement to promote patient care and train the next generation of eye health care professionals. Trusts are increasingly refusing to release doctors for these important duties and have totally ignored a recent letter from the NHS medical directors and President of the GMC emphasising the importance of such activities. In “Training Environments 2017,” Charley Massie (GMC Chief Executive) laments that time allocation for trainers to devote to training are under constant and serious erosion. My message for decision makers is simple - more resources must go into eye care and into those institutions which have a track record of effective eye care. As a patient I want my eye care to be under the clinical governance of a consultant. I realise that I may not see her/him at each visit but I need the reassurance that a senior doctor has oversight of my care. On the day - there was discussion also about the GMC consultation about Medical Licensing Assessments and the recommendation of the Royal College of Ophthalmologists - especially from its lay group – that medical schools ought to include a proper amount of time for the teaching of ophthalmology. News Spring 2018 37
Awareness
Growth in Glaucoma prevalence 2018
World Glaucoma Week took place on the 11-17 March. We worked with our
corporate partners to raise awareness of the need for regular eye health checks.
We were delighted that both Specsavers and Vision Express supported the week.
Specsavers
In the run up to the week, the IGA helped
to train retail staff about glaucoma, the fact
Did you kno
By 2035, it is w?
that the most common form of glaucoma
thought that
people in the 1 million
has no obvious symptoms, the tests that
UK will have
glaucoma
are taken, and how eye drops work.
Over 2200 Specsavers staff were trained
in advance of the week. The IGA also
featured in a TV advertisement running
from March which was complemented by
broadcast and press activity. Activity Get an eye he
alth check
underpinned our eye drop education
#WGW2018
campaign IGA Drops And You
(#DropsAndYou).
Vision Express
We helped to promote the need for
Did you kno
By 2040, it is w?
regular eye health checks with Vision
thought that
people globa 118 million
Express, through a film which shows the
lly will have g
laucoma
impact of glaucoma progression on
driver safety. This was promoted
through social media. Our regional
managers also toured the country with
the state of the art Vision Van and
helped to open Vision Express stores Get an eye he
throughout the UK.
alth check
#WGW2018
We value all of the relationships that we have with Government,
the NHS, with independents and multiples who help to support people with glaucoma.
As a small charity it is through joint working that we are able to create more noise about
glaucoma and the importance of regular eye health checks.
38 News Spring 2018Awareness
Glaucoma and dry eye syndrome 2018
Our National Awareness Week in June (4th to 10th) will focus on
the joint condition of dry eye and glaucoma.
Dry eye affects 50 to 60 per cent of people with glaucoma. It can be debilitating and has
an adverse impact on quality of life. It affects one in three people over the age of 65.
Surprisingly many people do not know that they have the condition. We want to correct
that with our campaign to run through The IGA National Glaucoma Awareness
Week 2018 (4th to 10th June 2018).
Above all, our campaign work is focused on getting regular eye health checks. Our press
and broadcast activity will underpin this important public health message.
• How you can help?
Put up posters in your local community
50-60% of people who are
being treated for glaucoma
also have dry eye syndrome
Write to your local editor about the
importance of eye sight checks
Undertake some fundraising activity
Ensure that your close family have
had a recent eye test
For FREE help and advice call us on
www.glaucoma-association.com
info@iga.org.uk
Last year a number of you wrote to your local newspaper a couple of weeks’ before
saying about the importance of regular eye health checks to detect glaucoma. These were
featured on the Letters page. If you have the time, it would be really helpful as part of our
campaigning work if you could do the same.
News Spring 2018 39Fundraising Could you help the IGA raise an extra £10,000 while doing your weekly shop? Whether you're dashing out for milk or doing your weekly shop, the ‘Give as you Live’ in-store cards are the convenient way to shop and raise money. Waitrose, Marks & Spencer,Tesco and ASDA are just a few shops taking part. The more supporters that get involved the more the IGA will earn! 50 supporters × £100 a year = £5,000 100 supporters × £100 a year = £10,000 250 supporters × £100 a year = £25,000 How does it work and how to join. Visit the IGA page on the Give As you Live website, https://instore.giveasyoulive.com/, order your in-store grocery card and pre-load with your shopping funds. Do your weekly shop and pay with the in-store grocery card. Remember to top up your grocery card regularly and each time you go shopping you’ll raise funds for us again and again. You can also use your card as payment when filling up at the pump. 40 News Spring 2018
A day in the life...
A day in the life of Tracey Fabre
Communications and Events Officer
1. My role
My role within the Communications department is
fairly varied and covers several different areas. I am
responsible for the production of all IGA literature
which consists of over 20 leaflets and booklets plus
various posters. I liaise with our graphic designer to
put together awareness posters, including the ‘are
you safe to drive’ poster, showing the effect glaucoma
can have within a driving environment. I also assist
Karen Brewer, Editor, in the production of the IGA
Newsletter. This includes proof reading of articles, liaising with the designer throughout
the production process and also with our printers. The newsletter has a six-week
turnaround which includes gathering articles, proof-reading, artwork and printing.
News Spring 2018 41A day in the life...
As well as the literature production, I also monitor
I love learning about the website forum keeping the content and event
information up to date.
the condition and
always find it fascinating Another part of my role is to attend various
to learn more about the conferences and trade fairs throughout the year.
effect glaucoma has on The majority of these are held in and around the
vision. I’ve worked at NEC in Birmingham and the aim is raise awareness
the IGA for nine years, of the International Glaucoma Association to
but it still never fails to professionals including consultants, optometrists
and ophthalmic nurses. It is also a great
amaze me how powerful
opportunity to keep up with advances in the
the brain can be detection and treatment of glaucoma which is
incredibly useful when working on the literature
and IGA newsletter. They can also be fun to attend,
particularly when they coincide with Crufts or Comic-Con. I think possibly the strangest
thing I have seen is a real camel outside the NEC. It was there to direct delegates to the
Dentistry show and all were encouraged to take selfies on their way past.
Every year the IGA assists in the organisation of the UK and Eire Glaucoma Society
meeting (UKEGS). The Chairman changes annually so the meeting moves around the
UK. My responsibilities are to source a suitable venue, secure exhibitors, process
delegate registrations, build the UKEGS website, liaise with speakers regarding their
travel and accommodation and liaise with the venue on all details including audio visual
requirements and exhibition space. The meeting has grown over the years and we
now have approximately 20 exhibitors, 250 delegates and 30 speakers. In 2018 it
42 News Spring 2018You can also read
