IGA News Winter 2019 SHARING SKILLS AND SAVING SIGHT - International Glaucoma Association
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IGA News
Winter 2019
SHARING SKILLS
AND SAVING SIGHT
Patron: Dame Maggie Smith
Contents Letter from the editor Page 1 News Page 3 Talking glaucoma Page 8 Experience Page 14 Sightline Page 22 Fundraising Page 26 Welcome Page 30 Support groups Page 32 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 Design/artwork: Yes Design Printed by: Fuller Davies Ltd Charity registered in England & Wales No. 274681, in Scotland No. SC041550 Cover image: Highlighting the IGA’s new Online Book
Letter from the editor
to introduce you to two new staff
members: Philippa in Scotland and
Joanna at our HQ in Ashford. You
can read more about their roles on
pages 30 and 31.
Thank you to everyone who replied
to the letter we sent to members
last autumn, asking what information
you’d like to receive from us
following the 2018 changes to
data protection law. At the time of
writing, around two thirds of you
have returned the form we sent
which is a wonderful result, so
thank you. For those who haven’t
Welcome to your winter edition of yet responded, it isn’t too late, we
IGA News, and a Happy New Year would still love to hear from you so
from everyone at the IGA. do send us your form or ring to
update us, and we will make sure
In our last two editions we brought our records are in line with what
you details of our 2018 Annual you’d like to receive from us.
Lectures and the expert Q&A
session that followed it. In this Thanks also go to those of you
edition we bring you the final who came to our regional patient
report from that meeting: from conferences in Manchester in
Ted Garway-Heath, IGA Professor of October and Newcastle in
Glaucoma at UCL. I hope this whets November. We really enjoyed
your appetite to join us at this year’s meeting you and hearing your views,
Annual Lecture and reception. Your and from the feedback you gave us,
invitation and further details are on you enjoyed the events too. We are
page 6; it would be lovely to meet busy planning activities for 2019, so
you there and hear your views about do get in touch if you think the IGA
what we’re doing, and what you’d like should host an event in your area.
us to do.
Finally, we would love to hear your
It’s a new year and we are delighted thoughts about how the IGA could
News Winter 2019 1
Letter from the editor
use technology to meet the future support and information needs of people
affected by glaucoma. Should we offer live webchat with Sightline advisors alongside
our regular telephone helpline? Would you be interested in virtual patient support
groups or webinars with live Q&A with glaucoma experts? Please tell us what you
think, either by dropping us a line or by going to our website homepage and taking
our survey.
Here’s to a happy and healthy 2019
Karen Osborn
Chief Executive
S igh t li n e h a s a n e w e m a il !
htline advisors on
As well as calling our Sig
01233 64 81 70
ur g la uc om a que rie s, you can now email
with yo
d ire ctly to o . Ju st se nd your questions to
them
sightline@iga.org.uk
u asap.
and we’ll get back to yo
2 News Winter 2019
News Eye appointment tariffs – an update You may remember that earlier this year we expressed serious concerns over NHS tariffs that financially incentivise first appointments above follow-ups. NHS England promised a formal consultation in advance of setting new tariffs but this has been repeatedly postponed. They did however recently issue some broad proposals spanning many different health conditions, but which included downsizing the tariff disparity from 30% to 20% for the year 2019-20. This wasn’t a statutory consultation per se, but an ‘engagement exercise’. The IGA responded that while this is a step in the right direction, we remain very concerned that the disparity will continue to distort clinical priorities and could put peoples’ sight at risk. We also urged NHS England to carry out a formal consultation as promised. Watch this space…. New IGA patient information booklet... The IGA has launched a new booklet aimed at patients identified as being at risk of glaucoma during a routine eye health check. It’s our hope that community optometrists across the UK will stock the free Eye Clinic Referral booklets and give them to any patients identified as being at risk of glaucoma. The booklet will help everyone involved: the optometrist, the patient, and the consultant. It can be difficult for optometrists to give a patient the news that they have some of the signs of glaucoma, particularly during busy clinics. The condition isn’t well understood and can be difficult to explain. On top of that, patients may be worried and upset, and not in the best frame of mind to absorb what their optometrist is saying. Having information to take News Winter 2019 3
News
away and read when things are a little calmer will
The booklet will help help patients, and also help optometrists provide
good customer care.
everyone involved: the
optometrist, the patient, The booklet covers everything a patient needs to
and the consultant know about being referred in to the eye clinic for
the first time: what glaucoma is, what to take with
them to the first appointment, what information to
tell the consultant, and what tests will be done. We also go through some of the
treatment options so if someone is diagnosed with glaucoma they’ll know a little more
about what to expect. And we suggest some questions they may want to ask the
ophthalmologist, so they’ll leave the appointment better informed about their condition,
and hopefully more likely to adhere to treatment.
The booklet should also help ophthalmologists, who are often frustrated at the time that’s
wasted in the initial clinic appointment. Patients can arrive unprepared and lacking the
information needed by clinicians, like what medications they take, what medical conditions
they have and whether there’s a family history of glaucoma. The time taken to pull all this
information together means less time talking to the patient, discussing their diagnosis and
working together to plan their treatment. Hopefully this booklet will help to change that.
Like all our patient information, the new booklets are available free and can be ordered
from the IGA website.
IGA research grants
Congratulations to Dr Tamsin Callaghan who has been awarded a grant of £24,995
under our optometrist’s research programme. The project will determine the reliability
and feasibility of glaucoma patients self-monitoring their visual fields at home between
clinic visits.
Congratulations also go to Prof Colin Willoughby who has been awarded three-year
funding of £99,606 for exciting new research that will shed light on the development
of fibrosis in glaucoma in order to develop new treatments.
4 News Winter 2019
News 2019 research grants Hot on the heels of Prof Willoughby’s award, our 2019 ophthalmology grant programme is now open. A further £100,000 is available and applications close on 1 February 2019. Details can be found on our website. Finally we are delighted to announce that £50,000 is available for research into nursing and glaucoma care. Colleagues at the Royal College of Nursing will help us promote the grant and judge the applications, and the closing date is 1 April 2018. Guide dogs Readers with poor vision may be interested in a service from Guide Dogs called My Guide. My Guide is a free service that helps people with a vision impairment get out and about with a fully trained volunteer as their sighted guide. My Guide can be used to access social, leisure and fitness activities and can help people stay linked to the life of their community. Sighted guides can also help increase confidence in moving about and feeling safer. Anyone who is interested can contact Guide Dogs on 0345 14 30 229 or email myguide@guidedogs.org.uk Partnerships are regularly reviewed and either party can withdraw with no obligation at any time. Request for help from the College of Optometrists Back in 2012 the College set up a Public Patients Reference Group (PPRG) to increase the ways in which they obtained input from patients and the public to their policies, guidance, and patient resources. The terms of many of the current members are now coming to an end, and they now welcome applications from patients and carers to join the PPRG. They are seeking 25 patients or carers from a range of backgrounds and from across the UK who: • Have experience of optometric care either as patients or carers • Are prepared to evaluate and comment on a range of issues relevant to patients whilst keeping the bigger picture in mind • Can communicate their views clearly and with respect for other people’s views You can find more information and the application form here: www.college-optometrists.org/the-college/about-us/governance/college-reference-groups/ join-the-patient-reference-group.html News Winter 2019 5
News
Save the date
IGA AGM and Annual Lecture
Friday 15 March 2019
Coin Street Conference Centre, London*
The AGM
Our 42nd AGM will start at 1pm, and nominations are invited for the IGA Board of
Trustees. We particularly welcome applications from people with current skills and
knowledge of PR, marketing, social media, digital technology, law, or fundraising.
The closing date for trustee nominations and resolutions for the AGM is 11 January.
The Annual Lectures
The lectures start at 2pm and this year our keynote speaker is Mr Gus Gazzard,
consultant ophthalmic surgeon and UCL Reader in Ophthalmology, Glaucoma Studies.
Gus is the Chief Investigator of the LiGHT Trial of Laser Treatment for Glaucoma, and
will be talking about the results of this major study into the most effective use of selective
laser trabeculoplasty (SLT). Gus will be followed by our own IGA Professor of Glaucoma
and Allied Studies, David (Ted) Garway-Heath who will talk about his latest research.
The lectures will be followed by a Q&A session with a panel of glaucoma experts chaired
by Prof Philip Bloom. The Lectures end with a
drinks reception from 5pm to 6.30pm, and we
really hope you can join us for what will be a
really interesting and entertaining afternoon.
The events are free but booking is essential so
to reserve your place at the AGM and / or the
Lectures please call us on 01233 64 81 64 or
email r.kew@iga.org.uk
6 News Winter 2019
News
* The Coin Street Conference Centre is based at the Coin Street neighbourhood centre,
minutes from Waterloo station.
Travel to us by:
Tube: Waterloo (Northern, Bakerloo and Jubilee lines) 5 minutes walk
Southwark (Jubilee line) 7 minutes walk; Blackfriars (Circle and District lines) 10 minutes walk
Bus: 1, 4, 26, 59, 68, 76, 77, 139, 168, 171, 172, 176, 188, 211, 243, 341, 381, 507, 521 to Waterloo Station
45, 63, 100 to Blackfriars Bridge; 381 to Stamford Street, RV1 along Upper Ground
Train: Blackfriars, Waterloo or Waterloo East
Boat: Blackfriars Millennium pier or Festival pier
Car: Whilst we encourage travel by public transport, there is secure underground car
parking adjacent to the centre.
News Winter 2019 7
Talking glaucoma
A Year in the life of the
IGA Professor
David Garway-Heath, known to all as
“Ted”, is the IGA Professor of
Ophthalmology for Glaucoma and Allied
Studies at University College London –
and a very busy man. In March 2018,
though, he found time to join IGA
members at the AGM and Annual
Lecture and to talk about his impressive
range of activities and achievements
over the previous 12 months. This
report is by Jacqueline Mitton.
In addition to clinical work as
Honorary Consultant at Moorfields
Eye Hospital, Ted does all the usual
things professors do, such as giving
lectures (including many invited lectures
around the world), carrying out research
and writing academic papers. But it
wasn’t only for his outstanding research
that Ted was named by The
Ophthalmologist magazine as one of the
most influential figures in ophthalmology
worldwide (he was 17th in their “Power List” in 2018). Ted is also taking a leading role in
setting the agenda for the future in glaucoma treatment and research, encouraging
collaboration and, in particular, focussing on patients.
President of the EGS
In January 2018, Ted became President of the European Glaucoma Society (EGS).
This important professional association is dedicated to “paving the way to better
glaucoma care in Europe.” Being President “is an immense privilege,” says Ted, adding that
the position gives him “lots of opportunities to make a difference to the ways research
and the education of professionals are done across Europe, and to find ways in which the
EGS can engage with patients more effectively.”
8 News Winter 2019Talking glaucoma
Ted emphasises that the EGS’s mission is very
The feeling is that a patient focussed. It exists to promote
European community of the best possible wellbeing of glaucoma patients
and minimise visual disability induced by
glaucoma people is building
glaucoma. Groups of EGS members with a
up for the first time with common interest, such as education, research
great potential to work and communication, work together towards
together to improve these aims. Ted is keen to bring in new talent
glaucoma care in Europe and encourage younger, upcoming members of
the profession to get involved in the activities of
the EGS. So, for example, the next generation of
potential leaders in the profession were being invited to a meeting in Italy in October
2018, to bring fresh ideas and come up with five-year plans for the EGS’s various
committees and interest groups.
Patient focus in practice
Ted has prompted the EGS to think more co-operatively about recording and sharing
outcomes for patients after treatment. As he put it, “We’re all busy trying to achieve the
vision of the EGS, that is to minimise glaucoma-induced disability, but there’s little
evidence that we achieve what we’re setting out to do because we don’t measure
outcomes in the same way in different hospitals or different countries.” So a special
meeting was organised in London in September 2017 with the aim of coming to a degree
of consensus about the outcomes of care that matter to patients and to clinicians, and for
society generally. It was a gathering of health professionals, industry representatives and
patients – including some IGA members.
One person who took part summed up the thoughts of many: “The meeting was great
and I heard a lot of comments of appreciation from the participants both for the
innovative content and the interactive format. The feeling is that a European community
of glaucoma people is building up for the first time with great potential to work together
to improve glaucoma care in Europe.”
Reports from the meeting are being circulated, not only to the professionals but also to
the IGA. “I want confirmation that we’ve got the point of view of patients right,” Ted said,
“and then the challenge is going to be implementing this in a meaningful way and ensuring
we do record outcomes that we feel are important.”
News Winter 2019 9Talking glaucoma
Collecting evidence
A scheme for recording one category of outcomes is already up and running. It’s the
brainchild of ophthalmologist Dr Nathan Kerr, a New Zealander working in Australia, who
had the idea when he spent time at Moorfields Eye Hospital working with former IGA
Chair, Keith Barton. The aim is to gather evidence about the effectiveness and safety of
various surgical treatments, especially some of
the newer ones.
We intend to try and build
up a network of patient Ted wasn’t surprised that many calls to the
organisations around Europe IGA’s telephone helpline are from patients
confused about treatment options. It isn’t just
to the standard of the IGA patients who are confused, he admitted.
Clinicians are confused as well! There is a
huge number of different surgical procedures
for treating glaucoma and what evidence there is about them so far largely comes from
the commercial companies that have introduced them. So Dr Kerr’s idea was for an
online “registry” where surgeons can all record their outcomes. At the time of Ted’s talk
the number of records entered since the registry started in 2015 had reached more than
2000 but the EGS is working on developing the concept, making it much bigger, and
encouraging members to use it.
Building on the benefits of collecting evidence, Ted wants the EGS to improve and develop
the Society’s guidelines for glaucoma care. In the past, he says, the guidelines were more
“eminence-based” than “evidence-based.” Now, though, they have started the process of
ensuring that guidelines are backed up by published evidence and are not just the
opinions of a few eminent specialists.
Patient organizations
However, that’s not the total of Ted’s ambitions for the EGS. He has yet more ideas about
involving patients. “Until now the EGS has been a purely professional organisation with
little input from patients to inform how we go about our activities.” he said. “So we want
to involve patient organisations better.
“One of the things we did last year was update our website and put in a tab for patients
visiting the website and at the moment it takes you straight to the IGA website. We
intend to try and build up a network of patient organisations around Europe to the
standard of the IGA. The UK is very fortunate that it’s got such a well organised one.
Only half the countries represented by the EGS have a patient organisation at all and
10 News Winter 2019Talking glaucoma
some of those are not as active as the IGA. I want to encourage a network so that best
practice can be learnt from the more active organisations and support given to countries
that don’t have them to build up new patient organisations.”
The Glaucoma Research Society
With another professional organization, Ted has taken on a completely different and
daunting task: addressing its lack of diversity. The Glaucoma Research Society, an
international society for academics doing research related to glaucoma, has around
100 active members but only six are women, there is no-one at all from Africa, and very
few from economically underprivileged countries. When Ted suggested the society
needed to change, he was put in charge of doing it – something else to keep him busy
for a couple of years.
Sharing experience
Ted is keen on sharing his experience and knowledge with the rising generation of
clinicians and scientists from around the world. He has mentored a number of them,
through networking and training them in a range of skills they will need to become
leaders in their field, such as making presentations and working with the media. In his
own department there are visiting fellows from Japan and Thailand, and two more coming
soon from Korea and Italy, as well as PhD students from the UK, Greece and Mexico.
In touch with business
Involvement with commercial businesses can be a controversial matter in medicine but
Ted points out that “they are part of the partnership in caring for patients.” He’s a
consultant or advisor to around ten pharmaceutical companies and makers of medical
equipment. For one thing, it is a way he can “keep them on track” aiming for what Ted
sees as the right goals.
Research
In the second part of his report, Ted turned to his research. Despite everything else
he takes on, Ted still regards research as his central activity as a professor. Grants
from several organisations, including the IGA, support the various projects in which he
is involved.
On three research programmes, Ted is currently Chief Investigator
• Development of a new machine and software for monitoring the visual function
of glaucoma patients with the aim of being more efficient and improving patients’
experience: supported by the National Institute for Health Research (NIHR).
News Winter 2019 11Talking glaucoma
This is something patients would greatly welcome and Ted had some preliminary
results to share. He said they were already able to identify with much greater
sensitivity whether a visual field is stable or changing, and do it quicker, so the
prospects are looking good.
• Identifying the genetic basis for heritable normal tension glaucoma with a focus on
mitochondrial function: supported by the IGA.
Ted explained what this means. “We know that pressure is really important but we
also know there are other things that make an eye more susceptible to the effects
of pressure. So we’re looking at the susceptibility factors, in particular ageing. We
know that glaucoma is more common as people get older. Why should that be?
“One of the things we know is that mitochondria, little packets inside cells that
produce energy, in general function less well as people get older. There’s good
reason to believe that these mitochondria may be important in glaucoma
development, particularly because the nerve cells in the eye are very dependent on
them. We’ve done some research in the laboratory already to identify that
mitochondria working well makes people more resistant to getting glaucoma. That
was published a few years ago. In this new research we will try to identify whether
or not there are particular genes that might be involved in poor functioning of the
mitochondria.”
• Which mechanisms confer resistance to glaucomatous neurodegeneration in ocular
hypertension patients; relevance to neuroprotection: a PhD studentship supported
by Fight for Sight.
This sounds very technical but it is another strand of the research on mitochondria. It’s
being done by one of Ted’s doctoral students.
Then there are four more ongoing programmes on which Ted is a Co-Investigator. In
particular, Ted highlighted the “Laser in Glaucoma and Ocular Hypertension” or
“LiGHT” trial being led by consultant ophthalmologist Gus Gazzard, at Moorfields
Eye Hospital. Its aim is to answer the question, “Which is better as the starting point
for treatment, Selective Laser Trabeculoplasty or eye drops?”
12 News Winter 2019Talking glaucoma
Ted also described a recently completed study
We’ve done some research on “Assessing the effectiveness of imaging
in the laboratory already to technology to rapidly detect disease
progression in glaucoma,” which was supported
identify that mitochondria by the NIHR. Summarising the results, Ted said,
working well makes people “a method we developed to combine imaging
more resistant to getting and visual field testing results was very sensitive
at identifying early on which people were
getting worse and how quickly.
It didn’t help to reduce the duration of clinical trials but we concluded that the method
would be helpful in the clinic once we could get software implemented – though not yet
for clinical trials of new medicines.”
Ted wrote up the results from this study in the form of a thesis as part of the
requirement for his election to the prestigious American Ophthalmological Society.
Of the 370 members, only 12 are from overseas and only two are from the UK. It was
a very considerable honour to be nominated. Fortunately, Ted’s thesis was accepted!
Making an impact
Research is all very well, but for everyone to benefit it needs to be published and it has to
make an impact. Ted listed the details of eleven papers published between March 2017 and
February 2018. Not only that, he had the evidence to show that other people are reading
his papers and quoting them in their own research. One of his papers, published in 2015,
has been cited so much it is in the top one per cent of all publications across the whole of
medicine. That shows Ted’s research is making a difference.
The IGA can be truly proud of supporting Ted.
You can read more about Ted and what he does at
www.glaucoma-association.com/research, and about the European Glaucoma Society at
www.eugs.org/eng/default.asp
News Winter 2019 13Experience
Glaucoma from a different perspective
Earlier this year, the Chair of the IGA
Trustee Board, Professor Philip Bloom,
travelled to India to share skills with ophthalmic
colleagues. This was Philip’s third visit to the
Trilochan Netralaya Eye Hospital in Sambalpur in
the Indian state of Odissa, made at the request
of Lucy Mathen, the founder of the charity
Second Sight. Lucy’s mission is to eliminate
preventable sight loss in rural India. Here
Philip shares his experiences.
“The first time I went was in 2013. I went there
to teach Dr Shiva Prasad Sahoo (left) who is
the most impressive clinician I’ve seen for a long
time, maybe ever. He’s an incredibly skilled and
gifted surgeon. Lucy asked me to go out there
to teach him phacoemulsification surgery.”
At the time Shiva was doing mainly what’s called Small Incision Cataract Surgery (SICS),
a manual form of cataract surgery that he did very quickly, taking between two and three
minutes per operation. “This chap, on a 12-hour operating list with one 40-minute
break in the middle, did 212 SICS procedures - it was written up in The Times over here.
I asked Shiva about it later and he said the next day he did another 208. Even the
quickest phacoemulsification surgeon in the UK would have trouble doing anything
like that. In the good old days when the NHS ran Saturday surgeries to try and blitz
waiting lists, I ran what were laughingly called ‘high volume lists.’ We got up to five phaco
surgeries an hour using two theatres and I would move between them changing gloves
and gown on the way.”
On Philip’s first visit, the surgeons didn’t scrub between cases and used the same
instruments dipped in alcohol which made things quicker. “In the three visits I’ve made,
their practices have changed completely. Now they’re more analogous to the UK and
yet it’s added only a very small amount of cost and time. “The learning experience
worked both ways, and Philip now occasionally does SICS procedures in the UK, as
taught by Shiva.
Philip’s second visit was to teach Shiva trabeculectomy surgery and the third time –
earlier this year - tube surgery. “Glaucoma there is underdiagnosed. In the past they have
14 News Winter 2019Experience
tended to rely mainly on pressures
- I tried to reiterate the need to
make the diagnosis on a number of
factors. In fact, Shiva now has an
OCT machine and a good visual
fields machine, but every time they
do a test it slows down their clinic,
and of course his time is very
precious. There’s quite a
smattering of angle closure
glaucoma, which, as everywhere, is
under diagnosed and missed, so I
stressed very firmly to his team
the importance of gonioscopy.
There’s also a surprising amount of low-tension glaucoma, and of course if they’re
diagnosing on the basis of pressure alone, they would miss that.”
“Their model of care is fantastic and very unique. One of Lucy’s visions is to eliminate
preventable blindness from the impoverished state of Bihar by the year 2020 and actually
she is on track to achieve this. She doesn’t wait for people to come to the eye hospital,
she sends vans out into very rural areas and they do the screening for cataract, glaucoma
and other conditions in local communities. In the past they did cataract screening just
with pen torches – it’s quite easy to do screening for advanced cataracts this way
because once people are bilaterally blind
the cataracts tend to be white or dense
and you can identify them very easily with
a simple ophthalmoscope, or even the The first time I went was in
naked eye. But increasingly they’re taking 2013. I went there to teach
slit lamps along and so now they are Dr Shiva Prasad Sahoo
diagnosing glaucoma more; increasingly it is who is the most impressive
being picked up on optic disc examination clinician I’ve seen for a
rather than simply on pressure.”
long time, maybe ever
Philip takes annual leave rather than study
leave to make the trips, and we asked if he
also took his own kit. “Yes, the first time I took over some instruments which I thought
would be helpful to Shiva, and he still has them. In the past we have taken sutures and
blades as well, but in fact Indian companies now make a huge range of such items
(including intraocular lenses and glaucoma drainage tubes) that cost a fraction of ours.”
News Winter 2019 15Experience Professor Bloom (second from right) with Dr Shiva Prasad Sahoo (far right) On his most recent trip, Philip’s first two patients were a 12-year old girl with Downs syndrome who had bilateral cataract (Shiva did slick bilateral phaco with lens implants) and a one-week old baby (see cover photo) “presenting with Buphthalmos due to congenital glaucoma (we agreed the safest course was to refer on to a larger unit that was better able to anaesthetise such a tiny baby for surgery).” But perhaps the most memorable part of the trip was an operation on an elderly man with glaucoma who was blind in one eye and had very poor vision in the other eye. “He was a completely stoical chap. Before the op I could see him and his family chatting outside; they were a little worried but not overly, quite unlike how it would be in the UK. I performed a glaucoma drainage tube operation under local anaesthetic – this numbed the eye of sensation but it also temporarily removed his little remaining vision. As soon as the op ended the theatre team stood the patient up for a photograph! He’s bandaged and can’t see a thing, and all of the theatre staff gather around him for photos. They did it with the best of intentions because it was the first tube op they’d ever had in the region, and they wanted to celebrate it in the local press. I was amazed and impressed by the 16 News Winter 2019
Experience
extraordinary level of stoicism acceptance and
Their model of care is trust on the part of this man, he didn’t ‘bat an
eye’, he just did what he was asked.”
fantastic and very unique.
One of Lucy’s visions is to “Shiva is held in very very high regard by his
eliminate preventable patients. He’s viewed in awe as something
blindness from the between a god and a saint, so they don’t chat
impoverished state of to him in the way that our patients do –
Bihar by the year 2020 they’re very respectful! In fact, it can actually
be quite difficult to engage with patients when
taking a clinical history. It is not that clinicians
aren’t interested in the patient, not at all, but if the patient merely provides a monosyllabic
response to every question, after a while you just stop asking. Consequently, it is not the
natural inclination of the doctors I was working with over there to have as full a
discussion of the risks and benefits of surgery with their patents as would occur in the
UK. Clearly, they are very compassionate people but they have developed a different style
of interaction that works for them.”
We asked whether there was any
resistance to any particular
treatments. “The problems with
drops are exactly the same as in the
UK: supply, understanding, cost and
so on, but those can be overcome to
some extent. And surgery is not
resisted per se. It’s the same in the
UK – if you give people options,
understandably the majority usually
go for the least interventional. One
way that I found useful when
discussing surgery with patients is
that we have to balance the risk of
doing something against the risk of
doing nothing. And if there is a risk
that doing nothing may lead to
blindness due to progression of the
underlying condition (as may be the
case in glaucoma), then often it is
less risky for the patient in the long
run to do the operation.”
News Winter 2019 17Experience Early in Philip’s career he experienced a case where a senior consultant had put off surgery again and again, and the patient gradually lost vision. “Someone told the patient ‘if only you’d had a trabeculectomy earlier’, and the patient sued him. At one stage the consultant had said ‘I’d much rather you go blind slowly than quickly’ indicating that there’s a risk of sight loss with any surgery, and on one level you can see his point. Ultimately however, although blindness is an extremely rare but sadly possible endpoint of surgery for the reasons I have outlined, that is not a reason not to do it. Glaucoma can also lead to quite rapid loss of vision – people can occasionally lose sight within months. Our job is to try and catch those who will go blind within their lifetime, and that’s difficult. Glaucoma doctors struggle constantly with this dilemma – it is probably true to say that most surgeons in the UK (certainly myself) become a little bit less aggressive with surgery during the span of their career.” Post-op patients having lunch next to the doctors in their rooftop canteen 18 News Winter 2019
Experience
“MIGS (Minimally Invasive Glaucoma Surgery) isn’t yet available in India but it’s only a
matter of time. They have laser surgeries, trab surgery, and often perform combined
cataract and trab surgery. Whatever else you
say about trab, it’s very cheap: it doesn’t involve
In India the balance is an implant: a couple of stitches, a couple of
different; the cost of clinical blades and that’s it, so trabeculectomy is a
cheap operation. On the other hand, trab
visits is vastly less and only
surgery needs lots of follow-up, and sometimes
very inexpensive surgical that can be a reason not to do it.
options will ever realistically
gain traction I think that can be one reason why people are
attracted to MIGS – it’s more of a ‘shoot and
forget’ option! When we consider the cost of
any surgery, we need to do a cost: benefit analysis looking at theatre time, the number of
post-operative follow-ups etc.
In the UK if an operation involves a costly implant but yet saves follow-up visits (like
MIGS), it may end up cheaper in the long run. In India the balance is different; the cost of
clinical visits is vastly less and only very inexpensive surgical options will ever realistically
gain traction.
One of the Indian manufacturing companies now makes an inexpensive glaucoma drainage
tube, so with the exception of MIGS they now have the full panoply of treatment options
available to surgeons in the UK (except MIGS), that is drops, laser, trabs and tubes.
However, the role of trained glaucoma specialists going over to provide education and
training is not only to instruct on the technicalities of practical procedures (ie how to
treat) but also and perhaps as
importantly, to decide when to
do them; that’s what I have
been trying to achieve.”
It takes both Philip and Shiva
30 to 40 minutes to do a
trabeculectomy “… in
Sambalpur that is the same
time it takes to do maybe
eight cataract operations.
To a lesser extent it is the
same in the UK, we try not
to do small numbers of longer
News Winter 2019 19Experience
operations like a list of four or five trabs: we’re encouraged to perform high volume lists
so we tend to do a mix of procedures so that the numbers are reasonably impressive; we
need to keep throughput up.
“The first thing that strikes many people when arriving in India (it certainly struck me) is
the marked contrast yet immediate adjacency of the comfort of the rich, right next to
devastating poverty. There are people in the poorer provinces who can afford to have
private surgery, so you see a local dignatory in a waiting room carrying his own very
expensive multifocal lens and his own cassette for the phacoemulsification machine -
because normally surgeons will use the same one for all the other patients, including
those who the dignitary might regard as lower caste people. The difference between
rich and poor is very evident.”
Shiva now funds his unit predominantly through his own fundraising endeavours. He
receives some funds from the Indian government and from various banks, and he also uses
income from his private practice to provide free eye health care for many many others.
“He regularly travels widely to consult and operate in geographically separate areas,
usually sleeping three - four night per week in transit, often on public transport like buses
or trains. He’s relatively young but has already had back problems as a result of that
lifestyle – the travel and the operating. Most NHS consultants consider that they work
hard; seeing how Shiva lives, how he works, what his patients endure, has helped me
realise how our UK work/life balance is not at all bad, and reminds me to appreciate
my good fortune.
Professor Philip Bloom
Chair of the IGA Trustee Board
20 News Winter 2019Sightline Withdrawal of the CyPass Micro Stent implant In August 2018, Alcon, the manufacturer and distributor of CyPass Micro Stent implant, announced that it was withdrawing the device from use. In line with the recommendations from Alcon, all eye clinics have now stopped implanting the device. We hear more from IGA trustee Nick Strouthidis MBBS MD PhD FRCS FRCOphth FRANZCO About the CyPass Micro Stent implant The CyPass Micro Stent implant was approved for use following the outcome of a clinical trial with a two year follow-up that showed that it was safe to use and effective at lowering intraocular pressure. The CyPass received the appropriate approvals to be used in NHS patients and was approved by NICE. The patients enrolled into that clinical trial, which compared patients undergoing cataract surgery alone with patients undergoing cataract surgery plus CyPass implantation, were assessed again after five years of follow-up. The patients who had a CyPass Micro Stent implanted at the time of cataract surgery were found to have greater corneal endothelial cell loss after five years than in patients who didn’t; this loss was greatest in patients whose implant was not advanced fully into the intended position. Alcon has withdrawn the device as a precautionary measure because of this observed increased loss of corneal endothelial cells. What is corneal endothelial cell loss and why might it be a problem? The cornea is the clear window at the front of our eye. It is important for the cornea to remain transparent to enable us to see. The endothelial cells are a layer of cells which help keep water out of the cornea, which makes sure the cornea stays transparent. We are born with a set number of corneal endothelial cells, and we cannot make any new cells. If the endothelial cells are diseased, damaged or a large number of cells are lost the cornea cannot maintain its transparency and it may become cloudy, affecting the vision. There are many factors which can reduce the endothelial cell count, including aging and the presence of glaucoma. Any surgery within the eye, including all forms of glaucoma surgery, will cause a degree of endothelial cell loss. Endothelial cell loss will not 22 News Winter 2019
Sightline
necessarily cause corneal haziness in all patients - it will depend on how many cells
are present to start with, how many cells are lost and how healthy the remaining cells are.
Should I be worried about this and what are the next steps?
Your vision is in no immediate danger from corneal endothelial cell loss at present.
In the study the difference in endothelial cell loss was noted after five years of follow-up
and at this stage it is not clear whether or not that cell loss will lead to future visual
problems in those patients. Alcon has indicated that in patients where the CyPass Micro
Stent implant is left ‘long’ in the eye (i.e. protruding into the anterior chamber), or sited
close to the cornea, there is a higher risk off endothelial cell loss.
It will be a simple procedure for your consultant to identify if you have at an ‘at risk’
implant. They will examine the eye with a special contact lens (a gonioscope) to establish
the position of your implant and decide whether you will need regular endothelial cell
count monitoring. In many cases no intervention, other than regular follow-up, will be
required. If you do have an at risk implant they may be able to consider further surgery
to have the implant modified so that it is less likely to damage the cornea.
It’s important to remember that in many cases the CyPass Micro Stent will be having a
beneficial effect by lowering the intraocular pressure in your eye. Attempting to remove
the implant more than four weeks after the original implantation could cause more harm,
including increasing endothelial cell loss further, than leaving the implant in place.
Surgical intervention to modify the implant may be considered if it is thought to be at
increased risk of causing corneal endothelial cell loss.
It is important that you keep your regular appointment in the clinic, and ask your
clinician if you have any questions about your treatment.
Picture copyright Alcon
News Winter 2019 23Sightline
Volunteers needed for our
Readers Panel
IGA patient information booklets go through
a rigorous process of authoring, editing and
proofing. One element of this involves a panel
of volunteer readers who comment on the
drafts and give feedback about whether the
information is concise and easy to understand.
We would like to recruit two or three
volunteer readers who are fairly new to
glaucoma, as this will help us ensure our
advice stays jargon-free and accessible to
everyone. It wouldn’t take up too much time:
we usually ask volunteers for help just once
or twice a year, and we rotate the readers to give everyone a chance.
If you feel you could contribute in this way please call Helen or Trish on the
Sightline number 01233 64 81 70 or email sightline@iga.org.uk
Awareness Raising in the North East
Our North East Development Manager, Hannah Morrow, has been running
awareness raising events for local people from black Asian and minority ethnic (BAME)
communities, who are at significantly higher risk of some types of glaucoma than people
from white European backgrounds.
During National Eye Health Week Hannah worked with Newcastle’s Health and
Race Equality Forum (HAREF) to run an event at a local women’s centre. 35 women
attended and Hannah provided basic glaucoma information in five languages. The feedback
was really positive: the guests learned something new about eye health and agreed to
share what they had learned with friends and family. 18 of the women also made an
appointment with local optometrist Smyra Malik for a free eye health check, and Smyra
tells us that all of them attended as arranged, some for the first time. She is keen to do
24 News Winter 2019Sightline
further community events with IGA, as are HAREF, and if the model works we may roll
it out across the NE region.
Hannah also presented recently to a group of Falls Link nurses to raise awareness of
the link between glaucoma and falls. She says “The nurses had lots of questions about
glaucoma and other eye conditions, and it felt like a really positive event. It’s the IGA’s
aim that all Falls clinics across the UK incorporate questions about eye health in their
routine triages: every patient being admitted to hospital after a fall should be asked
when their last eye health check was.”
Had glaucoma surgery? You could help someone.
We are always looking for new buddies: people who have had glaucoma treatment
and can provide reassurance or guidance to someone facing the same experience.
We would be particularly grateful for any buddies who could talk
about stents or other new treatments.
Contact Sightline - 01233 64 81 70 or sightline@iga.org.uk for more information.
News Winter 2019 25Fundraising Exciting Glaucoma research news Exciting news! We recently launched our Christmas appeal to raise funds to support our vital glaucoma research. As you have read earlier in this IGA News, we have four different research programmes running and will be working with The Royal College of Ophthalmologists, Royal College of Nursing, College of Optometrists and the UK & Eire Glaucoma Society. Our Christmas appeal highlighted the project that Prof Colin Willoughby is undertaking. We are excited that this project will mark a real turning point in preventing pressure within the eye and reduce scarring, ultimately resulting in the generation of new glaucoma treatments. ”I’m delighted that the IGA has agreed to support this study. The ultimate goal is to take this lab work closer toward the clinic and this project is the vital first step. Glaucoma has touched my family too, and we need newer and better ways to detect, treat and prevent sight loss from glaucoma.” At present, there are no treatments which specifically target scarring in the drainage channels themselves. Colin explains “In glaucoma there is a scarring response or ‘fibrosis’ in the drainage system of the eye. That scarring response leads to raised eye pressure which is a major treatable risk factor for glaucoma. Scarring also plays a role when patients have glaucoma surgery, and that can lead to failure of the surgical treatment. We have identified a key molecule or protein involved in this scarring response; the idea of this grant application is to develop treatments which target that protein - its medical name is NOX4 – both with drugs and by using a gene based therapy.” The hope is that targeting the protein and reducing its function may eventually provide a whole new generation of treatment options for this most common form of glaucoma. We are delighted that the appeal has got off to a good start, and we are on our way to reaching our £35,000 target; thank you to all those who have already contributed. However, there’s always a need to do more. We will keep you up to date with progress by updates in IGA News but if you would like further information about any of the research mention, we’d love to send you some details. Please call 01233 64 81 64, email info@iga.org.uk or go to our website to donate. In addition to the research mentioned above, we are delighted to announce that we are working on a joint project with Fight for Sight. The two charities are funding a 12-month project addressing the developing, testing and improving surgical procedures for glaucoma, specifically laser iridotomy. 26 News Winter 2019
Fundraising
Shop online? Use Amazon to donate to the IGA via
Amazon Smile at no charge to yourself.
Did you know your everyday purchases could help support people with glaucoma?
We’re excited to share a new great way you can donate to the IGA that won’t cost you
a penny! Free and easy to use, Amazon Smile donates to your chosen charity every time
you shop with them, all at no extra cost to you. AmazonSmile is a website operated by
Amazon with the same products, prices and shopping features. Your shopping experience
stays the same, but every time you shop on AmazonSmile, Amazon donates to your
chosen charity. Amazon automatically donates 0.5 per cent of the net purchase price
(excluding VAT, returns, and shipping fees) on every eligible purchase you make.
Please make the IGA your chosen charity by visiting the website www.smile.amazon.co.uk
and create an account or sign into your account if you already have one. Then search for
‘International Glaucoma Association’ in the ‘pick your own charity’ search bar and select
IGA. You’ll receive an email from Amazon and you’re ready to shop. Then shop as you
normally would, knowing each purchase you make also makes a real difference to people
with glaucoma.
Help support the International Glaucoma Association with Amazon Smile.
• Go to smile.amazon.co.uk
• Select ‘International Glaucoma Association’ from charity list
• Start Shopping!
There are no extra costs involved to you but Amazon will donate 0.5% of the purchase
price on eligible items to The IGA.
Remember – you must always go to smile.amazon.co.uk for The IGA to benefit from your purchases.
News Winter 2019 27Fundraising Thank you to our fundraisers We are very proud and lucky to be supported by some fantastic fundraisers who undertake a variety of activities from gruelling physical challenges to baking tasty treats, all with the view to raise funds and make a difference for everyone with glaucoma. Thank you doesn’t seem to go far enough; we really can’t do what we do without their support. Here’s a small selection of the exciting activities undertaken recently. Jeremy Gibbins ran the Humber Coastal Half Marathon in September, and so far has raised £260. ‘I chose to run for Glaucoma because my wife has suffered from the condition since the age of 25 and within three years of diagnosis she lost the sight in her right eye. While the physical effects of this disease are devastating the psychological effects can be even harder to come to terms with. I want to raise awareness that this is not just a disease of the elderly. And also show Cheryl how proud I am of her; she is currently a Teaching Assistant and studying for a Degree in History with the Open University, as well as being a wife and mum. I hope I can do Cheryl and our daughter proud as well as raising awareness and hopefully raise some money for this fantastic charity at the same time.’ 28 News Winter 2019
Fundraising
James Hilditch ran the Edinburgh Marathon Festival Full Marathon in May
raising £50. James Watts ran the Robin Hood Half Marathon in September and
has raised £216 to date.
‘My dad has suffered from glaucoma for the last 40 years and now my brother has also
been diagnosed with the eye condition that can cause blindness. It’s a condition that sadly
has affected other members of my family too.’
Runner? Been inspired?
Run the Vitality Big
Or know someone who might be?
Good news, we have places in the
Half Marathon 2019
and
Big Half Marathon taking place in London
help stop glaucoma sig
ht loss.
The Vitality Big Half – Lond
on Sunday 10th March 2019 and the
on’s most exciting half-mar
on Sunday 10 March athon – returns in 2019
and the IGA has 10 plac
es.
Prudential Ride London bike ride taking place
The half-marathon, which
starts close to the Tower of
the Cutty Sark, was created London and finishes at
to celebrate London’s dive
rsity and inspire more
on Sunday 4th August 2019. Contact Jenny for
people to get active and
take up running.
Join team IGA, take part
and support people with
further details on j.mccarthy@iga.org.uk
we can seek to find a cure glaucoma - together,
. Registration is free! All
as much sponsorship as you we ask is that you raise
can. To secure your place
j.mccarthy@iga.org.u email
k or speak to an IGA mem
ber of staff.
Once registered we will be
Places are limited so act fast to avoid disappointment.
in touch with hints and tips
fundraising as well as furth to help you boost your
er details of the run. You’
IGA T-shirt. ll also receive a branded
Cyclist?
Cycle the Prudential
RideLondon
2019 and help stop gla
Charity registered in Engla
nd & Wales No. 274681
ucoma sight loss
and in Scotland No. SC041
550
We have places in the Prud
ential RideLondon: the wor
of cycling. ld's greatest festival
The 100 mile ride starts at
Queen Elizabeth Olympic
on closed roads through Park, then follows a route
the capital and into Surrey’s
stunning countryside.
The 46 mile ride was crea
Finally – Good luck to
ted specifically for newer
cyclists, who might find a cyclists and also younge
100-mile challenge intim r
idating. It offers a great
Martyn Doe
introduction to cycling on
traffic-free roads and is a
your first sportive. wonderful way to ride
Both events, taking place
who is running the
on Sunday 4 August,
participants will have a spec finish on The Mall and
tacular unique medal desi
gned for the occasion.
London Marathon on
Join team IGA, take part
and support people with
can seek to find a cure. Reg glau com a - together, we
istration is free! All we ask
Sunday 28th April 20
much sponsorship as you is that you raise as
can. To secure your place
19
j.mccarthy@iga.org.u email
k or speak to an IGA mem
ber of staff.
Once registered we will be
in touch with hints and tips
fundraising as well as furth to help you boost your
er details of the run. You’
IGA T-shirt. ll also receive a branded
News Winter 2019 29
Charity registered in Engla
nd & Wales No. 274681
and in Scotland No. SC04
1550Welcome
Philippa Mason –
our new Development Manager in Scotland
Originally from Hertfordshire, Philippa studied Politics
at Cardiff University then moved to London and
Manchester before settling in Scotland 15 years ago.
She has a Master’s Degree in Political Research and
before joining the IGA she worked at Aberdeen City
Council, firstly as a research officer and then as their
corporate research manager. Part of this role involved
consulting with residents, trying to find out how they felt
about particular issues and ensuring their views were
included in any decision-making. Philippa helped design
consultations, wrote and analysed surveys and trained
others in effective consultation techniques.
“My role involves raising awareness and understanding of glaucoma among the general
population and promoting excellence in glaucoma care among health and social care
professionals. Practically, this means a real mix of activities including setting up patient
support groups, presenting to clinicians, networking with optometrists and pharmacists,
getting involved in national policies and strategies that involve eye health and liaising with
the media to promote and raise awareness of our work.
“I would say the biggest challenge of my role is balancing my workload over such a large
geographical area. It’s easy to travel between cities, but more difficult to reach our
disparate rural communities. My patch includes Shetland and the Orkney Isles so I have
to think of effective but cost efficient ways of reaching the entire Scottish population.
As the only Scotland-based member of staff, it’s also important for me to ensure the
views of Scottish glaucoma patients are represented at a UK wide level and that the
research and good practice conducted here helps influence the IGA’s policy and strategy.
“It’s been a steep learning curve so far. I knew very little about glaucoma when I
started at the IGA but as a researcher, I threw myself into learning as much as I could.
But paper-based learning can only take you so far. My real education is coming from
meeting people, hearing first-hand patient experiences, listening to leading
ophthalmologists, and visiting professionals working in the community. I’m looking
forward to hearing from our members in Scotland, and volunteers, and exploring the
opportunities to raise awareness and promote glaucoma education across the country.
If you’d like to know more about the work the IGA do in Scotland, please call me on
07789 10 21 89 or drop me an email at p.mason@iga.org.uk”
30 News Winter 2019Welcome
Joanna Bradley –
Head of Patient Support Services
This is a new role and I am responsible for the delivery and
development of the IGA’s patient-facing support services.
I oversee the work of our four regional Development Managers
(DMs), helping them to raise awareness of glaucoma, engage with
health and social care professionals and deliver appropriate
support to patients in their regions. I also oversee Sightline,
helping our Sightline staff to provide the best possible assistance
to our callers.
I’ll also be working with other members of the team here at the IGA to improve the
services we offer, including taking advantage of digital technology to increase update of
and engagement in patient support services. However, we want to ensure any new
technologies we implement are used to enhance, not replace, existing services. There’s
no point reaching out to new members if we exclude current ones in the process!
Another aspect of my role will be to monitor and evaluate our existing services.
We know the work done by our DMs and Sightline has a huge impact and we have lots
of anecdotal evidence to back us up. However, we’d like to implement better reporting
mechanisms so we generate the data we need to identify and share our successes.
I’ve worked in a variety of jobs before joining the IGA. I studied Natural Sciences at the
University of Cambridge, where I got hooked on playing rugby, including being on the first
women’s rugby squad to be awarded a Full Blue. After graduating, I became an industrial
consultant, working in factories to increase production or reduce waste. Realising a job
which sometimes involved a weekly commute to Germany(!) wasn’t for me, I returned to
Cambridge to study for a PGCE in Secondary Science teaching. I taught in London and
Canterbury, particularly focusing on A-Level chemistry and preparing students for
university. Looking to get more involved in strategy and policy, I joined the civil service,
where I worked as a strategic analyst for the Ministry of Defence, advising on the
management and mitigation of operational risks. I really enjoyed the scope and
impact of the role, but wanted to return to Kent and get a bit closer to where change
actually takes place.
This job at the IGA seemed like the perfect role for me, with lots of opportunities to
support and develop the IGA’s information management, strategy and patient
engagement. I’m really looking forward to learning more about glaucoma and the IGA
and helping Sightline, our Development Managers and volunteers increase awareness of
glaucoma and improve the lives of people living with the condition.
News Winter 2019 31You can also read
