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IGA NEWSWinter 2015

IGA Newsletter Winter 2015 (FINAL).qxp_IGA 15/12/2015 12:15

CEO Report Page 1Janice Krushner Memorial Meeting Page 3IGA Recognition Awards Page 5Janice Krushner Memorial Lecture Page 6Public Awareness 9DVLA Page 30Volunteer News Page 33Words from Sightline Page 36Clinic Trials Page 38Research Recruitment Page 39Becky’s Blog Page 40Support Groups Page 41

INTERNATIONAL GLAUCOMA ASSOCIATIONWoodcote House,15 Highpoint Business VillageHenwood, Ashford, Kent TN24 8DH

Sightline: 01233 64 81 70Administration: 01233 64 81 64Fax: 01233 64 81 79Email: [email protected]: www.glaucoma-association.comEditor-in-chief: Russell YoungWriter and deputy editor: Karen BrewerSub-editor: Tracey FabreDesign/artwork: Yes DesignPrinted by: Fuller Davies Ltd

Charity registered in England & Wales No. 274681, in Scotland No. SC041550Cover image: IGA staff undertaking a demonstration of the Henson 9000, courtesy of Topcon.

C O N T E N T S

IGA Newsletter Winter 2015 (FINAL).qxp_IGA 15/12/2015 12:15 Page 2

Dear Members and Readers,

In the Autumn edition of the IGANews, I highlighted the negativepublicity surrounding the charitysector. Research has recently beenpublished regarding how publicattitudes have changed.

The research involved 1000members of the public and notsurprisingly, in the last six months,the trust in charities has dropped toa nine year low, below the levels oftrust in supermarkets, TV and radio stations.

To try and put your mind at rest I canonly reiterate we are not, and havenot, been involved in any of theactivities highlighted in the national

press. Additionally, I have nointention of leading The Associationdown any of these routes and will domy utmost to maintain our ethicalstandards. Something I did notmention in the last IGA News is thatwe do not keep any records of creditor debit card details in our systems,and all our staff are trained in dataprotection. I hope this gives you adegree of comfort about how wemanage your personal details.

I am delighted to announce Jenny Green has recently joined The Association, as our newFundraising Manager, and iscurrently working her way throughan intentsive induction programmeto get to know and understandglaucoma, The Association and thesystems in the office. She has hadconsiderable experience in themedical charity sector and we are alllooking forward to working with herto integrate fundraising into thework that we do.

Last week, Karen, Tracey, Helen and Kelly as well as myself attendedthe UK and Eire Glaucoma Society(UKEGS) two day meeting inLeicester with 220 delegates inattendance. For The IGA this is oneof the most important meetings ofthe year where a significant numberof the glaucoma specialists and

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CEO Report


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CEO Reporttrainees come together to exchange views, research results and experience ofmanaging glaucoma. It is an ideal opportunity for us to bring ourselves up to date and ensure all our professional health care colleagues are maximising theservices provided by The IGA. For the first time ever there was an impromptucollection during dinner and this money was donated to The IGA for which we are very grateful.

The UK and Eire Glaucoma Society is one of the scientific meetings where the IGA not only organises all the logistics to ensure the smooth running of the meetingbut also funds joint research grants in collaboration with the Society. There were anumber of ‘firsts’ achieved at the meeting this year:

1. The number of delegates attending was above 200.

2. The UK and Eire Glaucoma Society increased the amount of research money allocated from The IGA.

The number of high quality research applications increased from six last year to 15 this year. When there are so many high quality research applications it isunfortunate that we do not have sufficient money to fund all of them. In time, andthrough a concentrated focus on fundraising, it is hoped that we can change this.

Best wishes for the New Year.

Russell YoungChief Executive


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Janice Krushner Memorial Lecture- London -

University of London, 20 Bedford Way, London WC1H 0AL4 March 2016, 1.30pm to 5.00pm

AGM 1.00pm-1.30pm All welcome to attend. Only the IGA voting members will be allowed to vote during this session. For more details, please contact us on 01233 64 81 64. Thank you.

Location University of London, 20 Bedford Way, London WC1H 0AL

Keynote Speakers Professor Clive Wilson - Eye drop deliveryProfessor Colin Willoughby - Glaucoma and MitochondriaProfessor David Garway-Heath - Research Update

Venue Information

Bus - Bus stops, within a five to 15 minute walk, are located on Euston Road, Gower Street, Tottenham Court Road, Woburn Place and Southampton Row. The closestare on Woburn Place and Southampton Row.

Underground - The closest tube station is Russell Square which is five minutes’ walkaway but there are six more within a five to 15 minute walk, including: Euston, EustonSquare, Goodge Street, Tottenham Court Road, Holborn and Warren Street, providing excellent access to most parts of the city via the Northern, Piccadilly, Victoria, and Central Lines.

Train - The closest station is Euston which is around a 10 minute walk or a short taxi ride away. Kings Cross and St Pancras stations are less than a mile away.

Car - There is unfortunately no parking available on site. On-street parking in theneighbourhood is available and managed by Camden Council. Private parking is offeredwithin a few minutes’ walk by National Car Parks (NCP). 20 Bedford Way is located within the Congestion Charging Zone.


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Name: Number of people attending:

Post code: Contact No:

Special requirements:

Office Ref: JKL16

✁Pre-registrations are not mandatory, but in order to help us organise the event, pleaseconfirm your attendance by calling 01233 64 81 64.


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IGA Recognition Awards

Once again, at the 2016 AGM on the 4th March, we intend torecognise those people who have made a significant contribution to The IGA, to patients or helped to raise awareness of glaucomaamongst the general public.

The three awards will be as follows:

1. The most successful fundraiser or group, whether it be health careprofessional or lay member or friend.

2. The individual or group that has done the most to raise awareness ofglaucoma and publicise The IGA.

3. The ophthalmic unit most appreciated by their glaucoma patients for the quality of their service.

As you will appreciate we need your recommendations for the third category and wewould be grateful if you could either email Richenda Kew on [email protected] or call her on 01233 64 81 67 before the 5th February 2016. It would be helpful if youcould give a few sentences as to why you are recommending the unit just in case we havea ‘tie-break’ situation.

We are well aware many people go to great lengths to support The IGA, to encouragefriends and acquaintances to have their eyes tested and ‘go the extra mile’ looking afterpatients. With your help we would like to recognise their efforts publicly in appreciation.

Russell YoungChief Executive


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2015 Research UpdateProfessor David Garway-Heath

IGA Professor of Ophthalmology for Glaucoma and Allied Studies, UCL

What I’ve done this year is to think a little bit about what the IGA may want to see from the IGA Professor of Ophthalmology. So, in terms of a report, what shouldthe IGA be looking for? Presumably you would like to see the IGA Professor isdoing relevant research, so, better diagnostics, new treatments. You would probablywant to see that I’m engaging in education, and probably raising awareness ofglaucoma and of the IGA itself. So, what I’m going to do is touch on some of thesebefore showing you some of the research that we’ve been doing this year.

In order for any academic to be productive, we need to think about the researchenvironment. You can have a brilliant individual out in the sticks, without anysupport for the research, and that individual might be less productive than someone who’s a little less brilliant but has a very good infrastructure around them,supporting them. And it’s a common question when looking at grant applications,look at the calibre of the individual, but also the environment to see whether or not the individual is likely to be productive in that environment.

So, the relevant question is where is the IGA Chair? And most of you probablyknow that it’s at University College London, and more specifically, at the Institute of Ophthalmology which is a standalone Institute within UCL.

How did these institutions do? Well, first of all, the Institute of Ophthalmology last year won the Queen’s Anniversary prize, and that’s a very importantrecognition of the excellence of research in the institution.

I’ll read out what it says:

‘The prizes are a biannual award scheme, which is within the UK’s national honours system. As such they are the most prestigious form of national recognitionopen to a UK academic or vocational institution, and the awards are presentedevery two years.’


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So the Institute of Ophthalmologywas awarded for its outstandingexcellence in eye research.

What about UCL? Well, there aremany metrics that are publishedand each university will pick onthe metrics that shows them up inthe best light. So, I’m going toshow you the ones that showUCL up really well!

This is the Times Higher Educationsupplement, and this ranksuniversities across the world inorder of their excellence ofresearch and I’ve selected herethose areas that are relevant forclinical, pre-clinical and healthresearch. And you can see herethat UCL ranks eight across thewhole world, which is a prettygood performance. And indeed, inone of the other ranking systems,here we’ve got the QS worlduniversity rankings, UCL as awhole comes up no five. You cansee British universities do quitewell in these world rankings(slides1 and 2).

Over the last year, theGovernment undertook anassessment of its universities; it’s called the Research ExcellenceFramework, and what they do is

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score universities in their output against a number of domains and judge them, anduse this scoring for future years’ funding awards, so they’re very important to theuniversities. These are the domains they look at. They have an overall quality profile,and they rank in five levels, with the highest level being ‘quality’ that is world leadingin terms of originality, significance and rigor. Another domain here is the ‘outputs’sub profile, and these are looking for, again, the same sorts of criteria as for theresearch outputs: originality, significance and rigor. They also have ‘impact’, which issomething that is relatively new (slide 3). What they want to see is how the

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research makes a difference to people in the real world. So for medical research,‘what impact does the research have on patients lives?’ so that is scored. Thenthere’s one that judges the environment. So how did UCL do here? Well, theiroverall ranking you will see is eighth equal, (slide 4) but that doesn’t tell the wholestory because another figure to look at is the number of staff that were submittedin the assessment exercise.

So it’s 2,500 research active staff, which is much higher than any other of the top10. The next nearest was the University of Oxford. And if you multiply up thenumber of people returned by the quality of output, you get a number which is called ‘research power’ and UCL comes out top on research power across the UK.So UCL does pretty well.

How do we go about measuring impact? There are a number of ways of doing it. One is to look at the quality of the journal in which the researcher is publishing and on the left column here, (slide 5) eye specific journals are highlighted and onthe right column general medical journals. And you can see immediately themaximum scores for eye journals is about 10 whereas the maximum for generalmedicine is 54. So they have to do some adjustment for the field that theresearcher is in, because it is actually very difficult for ophthalmologists and eyeresearchers to publish in the general medical literature. So this gives you the

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concept. We, as eye researchers, need to be aiming for journals like Ophthalmologyand Archives of Ophthalmology and IOVS and, if we’re lucky, we might publish inone of these very high impact general journals.

One of the studies we published last year has featured in some of these higherimpact journals. I presented this study last year: The UK Glaucoma Treatment Study.We published the research design in Ophthalmology and the participants’ baselinecharacteristics in Ophthalmology, and then the main outcome was published inDecember 2014 in the Lancet, which is a very high impact medical journal, with animpact factor of 39, and of course, in the acknowledgement section, the IGA figuresprominently as funding my salary.

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We’re becoming more modern now in looking at research impact, and there’s acompany called Altmetric which looks at other aspects of the impact a publicationmight make (slide 6). So this is looking at the UKGTS publication and the buzz that it makes in the general media. So they look at twitter feeds, facebook pages andother such metrics, and what we see here is rather reassuring that compared to allthe articles in the Lancet, we were in the 93rd centile, so we were right up thereeven for the Lancet, in the sort of media buzz that the research is creating. Thefunding organisations are beginning to look at this sort of metric.

So what other ways are there of looking at how the research impacts make adifference in the real world. “Did the research that was done ‘x’ number of yearsago feed through to better diagnostics or better treatments?” When UCL put in itssubmission for the research assessment exercise, it chose a certain number of itsresearchers to produce impact stories and I was chosen as one of the people at theInstitute of Ophthalmology for impact stories. What I put in was research that wasdone a while back now (as it often takes years to feed through); a few pieces ofwork concerning diagnostic instrumentation. One was for the imaging device calledthe ‘Heidelberg retina tomograph’, which came out in its earlier form around 20years ago and in its more recent form about 15 years ago. When it first came out,we decided it would be useful for classifying people as either having evidence forglaucoma or no evidence of glaucoma on the basis of the optic nerve head images,using measurements from the device. Mr Viswanathan will remember this becausehe actually wrote the software for the first version of the diagnostic algorithmwhich is now incorporated into the device software.Any patient that’s imaged withthis device will now have this diagnostic algorithm applied to them.

Also, in two other pieces of diagnostic software from different companies, (slide 7a and 7b) Heidelberg Engineering, and Carl Zeiss Meditec; (slide 7c) they’veintroduced this mapping which is helpful for clinicians, because it relates the visualfield test results to the imaging results. Therefore clinicians can look to see if theevidence they’re getting from their diagnostic tests is concordant, whether or notit’s telling them the same thing.

A little embarrassing for me (because I’m not in it for fame) is that it gets called the‘Garway-Heath Map’. However, the map is in diagnostic software, so I can say tofunders “Well, this is an impact my research has made in the real world”.


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There are other forms of impact,and I’ve eluded to this already,and it’s really down to popularpress. University funding or grantgiving bodies will actually look to see the evidence of researchentering into the public domainthrough the popular press. Last year, this was repeated again, I can’t be sure of thescientific rigor, but a list of the100 most powerful people inOphthalmology worldwide was published.

People around the world weresurveyed, and asked for names of people who were influential inOphthalmology, either fromindustry (so that’s the CEOs ofbig pharmaceutical companies or diagnostic manufacturers),scientists, and also clinicalOphthalmologists (slide 8). Outof the 100 in the final list therewere eight UK Ophthalmologists, or scientists, who featured and eight is not a bad numberbecause in the UK we have only1000 Ophthalmologists. There areprobably 1000 Ophthalmologistsin California!

So, numerically, we’re a smallergroup. But, four of the eight in theUK were specialists in glaucoma,

Slide 7a

Slide 7b

Slide 7c

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(slide 9) and you can see they arequite familiar faces: RogerHitchings, your previous IGAChair, and me, and fortunatelythey picked up that I am the IGAChair, so that’s a nice piece ofrecognition for the IGA. Also, Paul Foster, who spoke today, andProfessor Sir Peng Khaw, who isknown probably to everybody.

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So, what I’ll do, having given you that background of impact, is talk about theresearch and teaching activity that I’ve undertaken over the last year. I’ll just showyou a list of publications, 15 publications over the last year. More or less all inreasonably high impact journals (slides 10 and 11).

Moving on to new grants: I succeeded in getting a grant from the Health TechnologyAssessment Programme, and the objective of this grant is to devise quantitativecomputer-based methods for combining imaging results with visual field testingresults, so we can identify people who are worsening, more reliably, and also toshorten the duration of clinical trials. In future years, I’ll report back and tell youwhat progress we have made and one of my collaborators on this is ProfessorDavid Crabb, who has spoken in this forum.

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In terms of lectures, I’ve been quite busy, for example, I lecture on the EuropeanGlaucoma Society Residence Course, which is held once a year, on the subject of normal tension glaucoma.

A research meeting in Switzerland - this one here was a lecture course at Imperial College, teaching Health Economics students about future trends inOphthalmology and how that will impact on the way care is given in the future.

I was invited as visiting professor at the Medical College of Wisconsin. This one is for a meeting with European research funding stream that’s in collaboration with the University of Kent to develop new imaging devices for application in Ophthalmology.

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And then after that, I gave an invited lecture at the Yamaguchi University.

This is a pharmaceutical company’s sponsored education programme. And then ourbig research meeting of the year in May, in The Association for Research in Visionand Ophthalmology (ARVO). This was an invited talk, talking about mitochondrialfunction and I’ll come back to that in a moment, because that’s the featuredresearch for this year that I’ll tell you about.

We gave an open day for the public at Moorfields, to talk about our clinical researchfacility, then at the European Glaucoma Society (EGS) meeting in the summer, I gaveseveral talks; this one was on quality and outcomes in glaucoma care, because oneof the things that we haven’t been very good at in the past is measuring the qualityof the care that we give. In order to measure the quality of care, we need to identifythe outcomes to measure, so this is work heading in that direction.

And then a variety of didactic lectures at the EGS congress - and a debate there.

The Glaucoma Research Society in the States, and then a patient day that wassponsored by the Biomedical Research Centre at Moorfields - I gave a couple oftalks at that. And then I was the keynote lecturer at the Japan Glaucoma Societymeeting in the autumn – and I gave a couple of lectures there.

And a lecture at the European Research Meeting in Nice, in October. This one,again, I was keynote lecturer, for the Optometric Glaucoma Society in the States,and gave a number of lectures there.

So, that gives you an idea of the number of air miles that I’ve collected during the year!

What about ongoing research?

This year, I’m going to focus on risk factors for glaucoma, having glaucoma, anddeteriorating glaucoma.


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We’re all aware the pressure inthe eye is important as adamaging factor of the opticnerve head, but we know thereare other features, for examplethe blood supply. If we look here,(slide 12) this reminds us of whathappens in glaucoma, the nervefibres are damaged and lost, andwe lose the neural rim in theedge of the nerve head. And thatresults in the patchy visual fieldloss which you’ve heard about(slide 13).

So what are the causes ofglaucoma? The main one we know about is the raisedpressure, but there are a numberof susceptibility factors. We arewell aware that different patientsget worse at different speeds, atmany different pressure levels, sothere must be other factors thatare important (slide 14).

These may be factors in the eyeor systemic factors like bloodpressure, genetic factors, maybe

factors in the environment; they’ll interact with the intraocular pressure, and maybecause subtle variations in the appearance of the nerve damage. In some cases, theymay lead directly to these slightly different appearing glaucomas, or even to what werecognise as a typical glaucoma.

If we look at published clinical trial evidence for factors that are important forglaucoma progression, for example, the Early Manifest Glaucoma Trial from Sweden.

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Near the top of the list is highintraocular pressure - that’s afactor for worsening, also lowblood pressure and somethingthat comes out in all the studiesis older age. The older you are,the more likely you are todeteriorate faster. This isfrequently highlighted fromepidemiological studies whichPaul Foster has demonstrated,the older you are, the higher thefrequency of glaucoma (slide 15).

So what is it about getting olderthat makes the eye moresusceptible to glaucoma? Well, we don’t know the answer yet,but there are a number ofpossibilities. We all know we getstiffer as we get older, so thereare changes to the connectivetissue all over the body, but inparticular in parts of the eye. This is what we call laminacribosa which is in the opticnerve head and that’s thestructure through which thenerve fibres leave the eye to go

to the brain (slide 16). Well that gets stiffer and loses viscous properties, so it losesits shock absorbing properties. That’s probably important. We know that themembranes around the blood vessels get thicker as people get older, so it’s moredifficult for nutrients to diffuse through thicker membranes to get to the nervefibres. Those are possibilities.

But there’s another possibility around what we call ‘mitochondrial dysfunction’, and

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I’ll describe what that is.

Mitochondria (this is a schematicup in the top left corner): (slide 17) you can think of theseas little batteries within every cellin the body that produce energyfor the cell to function. In thediagram underneath we have acell, showing the outside of thecell, the nucleus which containsthe DNA, and then scatteredaround it are little packets,mitochondria, that produce theenergy for the cell to work.

There are structures in the eyethat are very dependent on thesemitochondria, these littlebatteries, particularly the cellsthat are damaged in glaucoma andthat’s because the nerve fibres inthe retina are not insulated, andthey need a lot more energy topropagate nerve signals thannerves elsewhere in the body. Soit makes them very susceptible tomitochondrial dysfunction.

There’s a theory of ageing that was first put forward in the 1950s that relates tothese mitochondria. This is described as mitochondrial dysfunction associated withageing, associated to oxidative stress, which damages the mitochondria. I’ll describewhat the oxidative stress is in a moment.

When energy is produced by these mitochondria, a side effect of this energyproduction is high energy electrons, and these combine with oxygen, to what we

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call reactive oxygen species which is unfortunate because they damage tissue. Thesewill make collagen tissue stiffer, it will damage DNA which is the components ofcells that tell the cell what type of protein to make. So there’s this vicious cyclethat’s set up between the production of these reactive oxygen species, the damageto the mitochondrial DNA, poor mitochondrial function, and then more reactiveoxygen species being produced.

One of the questions we need to ask is ‘Do some people have better mitochondrialfunction than others?’

We undertook a study to see if mitochondrial function might explain eithersusceptibility to pressure in the eye, or resistance to pressure in the eye. So withmy PhD student, we took 30 patients with high pressure in the eye, but no signs ofdeterioration, another 30 patients with low pressure, but quite fast deteriorationand then 30 subjects with no eye disease. We then looked at various aspects ofmitochondrial function. We looked at the production of energy in the cell. Welooked at the amount of mitochondria in the cells, and we looked at measures ofwhat we call oxidative stress, and the defence against that oxidative stress in the celland we looked at peripheral blood cells. Now you may think that’s a bit strangebecause glaucoma happens in the eye, not in the bloodstream, but we reasoned thatthe mitochondrial function in the peripheral bloodstream might represent abackground susceptibility that may be inherited or may be a result of life stylethroughout life, that would be reflected in the eye as well.

So, this is just a brief look at the results (slide 18). What we found was that peoplewho were resistant to high pressure in the eye had much better mitochondrialfunction than either the people with normal tension glaucoma or healthy subjectswithout any eye conditions, which initially was a bit of a surprise. We wereexpecting to see people with normal tension glaucoma having worse mitochondrialfunction, but we didn’t see that. But, it was a strong signal that people who wereresistant to the pressure have good mitochondrial function.

One of the reasons, we believe, for this better mitochondrial function, is simplymore mitochondria, which is what this graph is showing here (slide 19). You can seethe ocular hypertension (OHT) are the people with the high pressure but noglaucoma. They have greater mitochondrial mass than the other two groups. We didwhat we call a Bayesian network analysis to look at all our results. As we looked at


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many many different parameters,we wanted to make sure they were consistent with each otherand not arising just by chance.What this analysis does is show us our results are consistent; there are some sense checks aswell so it picks up that pressure is still important and the bloodpressure is also important. So, now we’re beginning tounderstand susceptibility topressure in the eye a little bit more.

We now know that apart fromblood pressure, mitochondrialfunction is a likely candidate forsusceptibility. To summarise that,mitochondrial function is aplausible contributing factor toglaucoma susceptibility, and ourexperimental evidence points to better mitochondrial function in people who are resistant to glaucoma.

You may ask what the next stepsare. Well, the next steps are to

validate this in another population. In this study we looked at a very well definedpopulation. We want to know if it applies to everybody who might have glaucoma. So we need a new clinical trial where we measure mitochondrial function ineverybody taking part in that trial, and also evaluate potential therapies, becausethere are medicines available which will improve mitochondrial function. So we are in the process of developing a grant that will put through the European Union as amulti-centre grant across Europe to do just this. Thank you for your attention.

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Q&A

The questions below were asked following all lectures. Some of the questions wererelating to the preceding lecture by Mr Ananth Viswanathan.

Q - For Mr Viswanathan - How fast and how far do you think policy is going tocatch up? And I ask that question looking at the latest leaflet (Driving andGlaucoma) that we have today dated October 2014 – where it says ‘when takingyour visual field test, the frames of glasses can interfere with the peripheral vision,so take the advice of the testing technician’ which in my case was to take them off.Well, if I take them off when I’m driving, I’m illegal and I’m uninsured. So, it seems tome that there’s a long way for policy to catch up. Would you care to comment?

A - Mr Viswanathan - Certainly. To take your comment which is quite right aboutthe spectacle frames, that it seems nonsensical. That you are allowed to do yourEsterman visual field test with your spectacles on, and with them off, and the DVLAwill take the better result, even if you are required by law to wear your spectacleswhilst driving. Now that may be a hand waving attempt to get round the fact thatthere are lots of things that we can’t do with the Esterman test, relate to the realdriving experience, the biggest of course is head movement. If you’ve got thickspectacle frames, you will compensate by moving your head, but you can’t do that ifyou’re forced to look straight ahead wearing thick-rimmed glasses in a visual fieldtesting machine. So, that’s why that particular anomaly occurs and I agree, it isanomalous, although I think it’s quite good that the DVLA will take the better result.

So, if you don’t have a very strong refraction, and you can produce an Esterman test,that meets the standard, that will be acceptable, even if you’re wearing your glassesfor driving, and had you done your test with your glasses on, you wouldn’t have metthe standard. So, to that extent, it’s lenient. How quickly will policy catch up withthe science, well, what I hope we’ve shown, is that we are getting better scientificinroads in relating what we can measure with fitness to drive. What we need to dois to try and get the policy makers to translate that into policy, and for that, weneed better information. So, I pointed out some of the difficulties with the Estermantest, and I don’t think there’s any visual scientist who would say ‘the Esterman test isa really good test of visual fitness to drive’. It needs to be improved, but if it does

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need to be improved, and that needs to go in policy in the UK, and that means theEU, we have to come up with something better, so we have to be able to validate it.But, as you see, work in under way to do that.

Q - Since I’ve had my trabeculectomy I’ve had major problems with my eyesight. My consultant said to me ‘Well, had I told the DVLA?’ as I have another year to runbefore I had to be re-tested by them. So I rang them up and was told ‘No, even if myconsultant had said that I probably needed an eye test’. They said ‘No I didn’t needone for another year’ because that’s when they would call for me. So then I wrote aletter to them, and eventually got the test organised. But I just wondered, why can’tmy consultant be in direct contact with the DVLA? because he’s the one that knewwhat my eyes were doing, and whether I needed the test or not. And it seems tome to be an extra process to go through for me to get in contact with the DVLAand then them to come back to me and then I have to take the information to him,or in this case they sent it to him. Do you see what I mean? Why can’t myconsultant organise the driving eye test as well?

A - Mr Viswanathan - Ah well, there’s two main reasons for that. The first is thatessentially, not the contract, but the relationship is between the driver and theDVLA. When we pass our driving test, you know, the small print on the drivinglicence says, ‘if you develop a medical condition, that might impair your ability todrive, you need to let the DVLA know’. Now, the DVLA may very well ask for theopinion of your treating physician, but that’s simply to support your case, or to givesome extra evidence, and there’s now a more practical reason why the hospital orthe clinic won’t be able particularly to help the DVLA, and that’s because thecontract for testing vision has been outsourced by the DVLA. Nothing to do withthe vision panel, but it’s now under Specsavers. So, that’s where your vision test will be done.

Q - If it’s up to the driver to contact the DVLA and then go to Specsavers, he canchoose not to go to Specsavers and he can still hold a licence when he’s considerednot safe to drive.

A - Mr Viswanathan - Well, that’s illegal. If your treating physician advises you thatyou should let the DVLA know, and you don’t, you’re choosing to do somethingthat’s illegal.


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Attendee - Well, it is illegal, but you might have killed somebody before somebodyfinds out.

Mr Viswanathan - Absolutely, and that’s why the onus is on medical professionalsto let patients know if they ought to be letting the DVLA know and there are quiteserious repercussions for Doctors if they don’t.

Q - I’m very concerned that at the age of 70, people have to re-apply for theirlicence, but at age 70 they don’t have to have an eye examination. Now, there areplenty of people in this age group getting out more and more and driving more and more. A friend of mine who’s 81, hasn’t had an eye examination and until anaccident comes, then everyone’s concerned. Don’t you have any influence on thepolicy at the DVLA? To have a mandatory eye examination at the same time?

A - Mr Viswanathan - Absolutely, and this is something that the panel couldsuggest. But our job is to synthesise evidence and to try and inform policy. Now, at the moment, we certainly can do it, we’re not constrained by the way policy is at the moment.

We don’t need to take that into account as a panel, but the way policy is at themoment, across all medical conditions, the onus is on the driver to reportsomething if it goes wrong. So, in the same way that you don’t have an ECG whenyou’re 70, to make sure that you’re not going to have a heart flutter that mightmake you fall asleep at the wheel. You have to declare it if it’s diagnosed, the same, at the moment, applies to vision. Now, we don’t know what the consequenceswould be of testing a large population of 70 year olds who don’t have anything toreport. If that were to become policy, we need to become very careful about howwe differentiate false positives.

The people who the test said ‘there might be something wrong’ but actually therewasn’t, and that’s true of any test. So I absolutely take your point, and people cango through life for a long time driving without any vision tests but it’s a complicateddecision to try and make it mandatory across the UK.

Professor Garway-Heath - I’ll just say something briefly which I think is a veryreal potential role for an organisation like the IGA, to lobby for something like that.

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25News Winter 2015


There’s evidence in the literature that undiagnosed glaucoma or late diagnosis ofglaucoma is related to usage of eye care services. So people who do not go to seetheir Optometrists are less likely to have their glaucoma picked up. So this,re-validating your driving licence at the age of 70, is an opportunity to have the eyestested. And I know that the IGA has considered lobbying on that in the past. I don’tknow if you want to say something Russell.

Russell - we are in deep discussion with the DVLA on regular eye testing and we’dlike to see it brought forward to younger drivers.

Mr Viswanathan - Well, that’s absolutely right. That would be a good opportunityfor diagnosing glaucoma, lots of other things too. Yes.

Q - Hi, I have a question about the future for glaucoma patients and especially thefield loss. There has been some research done in Germany by Professor Sabel, in theUniversity of Magdeburg, and he was able to improve the visual field of glaucomapatients quite substantially. So, I wonder whether you see any hope in this kind ofresearch, where he uses electric currents to stimulate the brain, because he says it’snot only the eye which is damaged but it’s the connection in the brain which youcan re-stimulate. My second part of the question would be whether UCL and otherbodies are looking into this kind of softer option of glaucoma treatment.

A - Professor Garway-Heath - the technique that’s used is actually electricalstimulation of the eye as well as the brain. The improvement in visual function doesnot seem to be long lasting, if it’s there at all. Because one of the very difficult thingswith this sort of treatment is to get a way to exclude, what we call a placebo effect,where people having the treatment are expecting and wanting a benefit. But thereare some quite powerful reports from individuals saying ‘my vision was definitelybetter’. So we have to think about what the mechanism is for that visionimprovement. It may be a number of things, it may be improved blood flow for ashort period of time. What we need to understand is whether or not there really isan improvement, whether that alters the cause of the glaucoma and whether it’slong lasting. My feeling from what I’ve read of these reports is that it’s not likely tobe long lasting, and the improvement is fairly minor and not consistent, so I thinkwe need a lot more research in that area to be convinced that’s it’s a viable therapy.But there are lots of other potential measures, there are some drugs that will


News Winter 2015


26

improve visual function while they are being taken as well, so there’s a lot ofresearch that’s addressing that particular topic but from my perspective, moreimportant, is to identify the condition earlier, so that we can prevent the visual fieldloss from happening in the first place.

Q - Mary Shaw, one of the IGA Trustees – Mr Viswanathan, is there some mileage inhaving compulsory sight tests for everybody involved in a reportable car crash? Andfor Professor Garway-Heath, in terms of the mitochondria, where do you see thatin terms of treatments?

A - Mr Viswanathan - I think that is quite right, because we know that peoplewith visual field problems are slightly over represented in those who are havingaccidents, and those at fault. From a practical point of view, it has to be somethingthat’s easily applicable. That’s why we still have the number plate test for visualacuity, which seems odd, because the letters are an odd shape, they’re on a carthat’s often an arbitrary distance away, and the lighting conditions are non-standard.And the reason for that, rather than using an optician’s type chart, is that apoliceman or woman at the side of the road, can apply the test. Now, if we hadsomething like that, which we may have soon, then yes would be the answer.

Professor Garway-Heath - Mr Viswananthan is referring to research I’vepresented at a previous meeting, which is a vision function test that can be given on a laptop and potentially even on any mobile device with the right lenses, and hehas also been involved in writing the software for some of the earlier tests. So, yes,there may be visual field devices the police could carry around with them in thefuture, absolutely.

On the question of mitochondria and the potential for therapies, absolutely, that’sthe direction we’re going, so my current PhD student is repeating the same orsimilar experiments looking at mitochondrial function, but using a skin slip from theskin, so that we can grow these up in the lab and keep them for long periods oftime. We can try different drugs on the cells, and then measure the mitochondrialfunction. So there’s a panel of potentially advantageous drugs that we’ll be trying onthese cells that will inform a future clinical trial.


27News Winter 2015


Q - Could I just ask, we aren’t the only people with driving licences and tests andthings. Is there anybody else in the EU or America, or anywhere else, that have goneinto the sorts of things that you’re looking at, that could be of help?

A - Mr Viswanathan - Very much so, as I showed some of the research has beendone elsewhere in the EU and in America and Australia. They’re very active in thisarea of research, so we all do collaborate, very much so.

Q - A question for David Garway-Heath, you were talking about outcomes wherethere has been a trabeculectomy and cataract has developed. I understand thatthere has been some research that indicates if a lens is implanted there is alikelihood of increased pressure in the eye and for that reason cataracts are notrecommended for those who’ve had trabeculectomies.

A - Professor Garway-Heath - Well, it’s true to say that if you’ve had atrabeculectomy and then you subsequently have a cataract operation, the chancesof the trabeculectomy scarring over and stopping working is relatively high, but formost clinicians that doesn’t alter the decision whether or not a cataract operationis warranted because it’s the patient’s best interests that really decides the matter. If they don’t see well enough because of the cataract, there’s no point in leaving itthere just to preserve the trabeculectomy. And we have other operations that wecan do if the trabeculectomy does fail. We can revive the trabeculectomy, we can doother operations. So I think for most clinicians, we discuss the pros and cons withthe patient and ask the patient what approach they would like.

Mr Keith Barton - it’s probably worth pointing out that although the risk is high,it’s not super high, it’s about 30 per cent (studies going back to the nineties) ofpatients have a higher pressure and 10 per cent needed more drops. It’s not 70 or 80 per cent.

Q - First to comment - I’ve had trabs, seven and eight years ago, and two years ago Ihad a cataract operation and I must say, I can see the milky way now and I don’thave to wear glasses but I do have to have drops every day. But my question is, isthe DVLA aware of the variation in standards of testing at Specsavers? Becausethere seems to be a lot of dissatisfaction with a lot of branches.


28 News Winter 2015


A - Mr Viswanathan - I can’t speak for the DVLA, but I’m very well aware thatcomplaints are being made, so I would imagine they’re becoming more and moreaware on a daily basis.

Mr Keith Barton - Russell could probably comment better on this as he’s been to the DVLA, but the IGA made the DVLA aware of this if they weren’t already.

Russell Young CEO - Yes, we’re collecting information from every patientmember that’s had bad experience, collating these and arranging anotherappointment with the DVLA senior officers to discuss this with them.

Mr Keith Barton - I would personally encourage all of my patients, which is asignificant trickle of patients who have a problem with their Specsavers experienceor their DVLA experience to inform the IGA. The IGA are trying to deal with theDVLA on a constructive basis rather than just having a moan about it. So, if you do have problems, let the IGA know and we’ll try and take if forward in aconstructive fashion.

Mr Viswanathan - Yes, that’s a really important point. Do please report it. Don’t just put it down to a bad experience. Things won’t improve otherwise.

David Garway-HeathIGA Professor of Ophthalmology for Glaucoma and Allied Studies


29News Winter 2015

Public Awareness

National Glaucoma Awareness Week, 6-12 June 2016

This year our national awareness week in June will focus on glaucoma and relatives. I am sure that our members already know that close relatives (brothers, sisters, parentsor children) have an increased risk of developing glaucoma. In general, it is at least fourtimes more likely that they will develop glaucoma in comparison to others without afamily history. The risk is higher to brothers and sisters than to parents and children.Other more distant relatives are also at some risk.

This is why regular eye health checks are so important. A simple eye health check at a local optometrist will detect the early signs of glaucoma, and so long as treatment is followed and adhered to, will protect family members from losing sight. It isrecommended that people with the most common form of glaucoma in the UK (primaryopen angle glaucoma) have regular eye health checks every two years. Eye health checksare in fact free to relatives with a family history of glaucoma if you are over the age of 40.

We will be working with hospitals and optometrists throughout the country. But, as partof our awareness week activities, we will also be raising awareness in the local communityand working with radio stations and local newspapers to explain about glaucoma and howimportant eye health checks are. Can you help us with this?

• Are you willing to tell your story to the local press or be interviewed on the radio?

• Have you made a point of letting your relatives know about the condition and do theyhave regular eye health checks?

• Are you interested in helping to raise awareness in your community through a displayat for example, the local library, cafe, GP surgery?

• Or could you provide information to your local Parish magazine?

• Or place a collection box in the local area?

• What about making a donation to support your relatives with glaucoma?

If you are willing to share your story with us, please get in touch with me on my directline: 01233 64 81 69 or email: [email protected] or if you want to help with any of our fundraising activities, please contact: [email protected] or call 01233 64 81 60. We look forward to hearing from you.

Karen BrewerHead of Communications


30 News Winter 2015

DVLA

Driving and glaucoma

The majority of motorists with glaucoma will be safe to drive.

As many of our members know, driving and re-applying for a driving licence is one of the main reasons why people call our helpline. In the most recent analysis of calls toSightline, nearly one in five (19 per cent) of calls concerned driving. Members and callersare concerned about the visual field test, taken in the opticians recommended by theDVLA, which is often different to the usual visual field test taken in hospitals and areunderstandably anxious about the outcome.

The IGA and Sightline are acutely aware of the concerns that people have and want toprovide some reassurance to our members and supporters. We know from statisticalevidence over the last five years that nine out of 10 drivers who report glaucoma to theDVLA will be considered safe to continue driving.

This is positive news for the many thousands who report to the DVLA each year. To putthis into some context, in 2010-2015, there were 166,452 drivers with glaucoma holding a Group One (ordinary vehicle) licence who were asked to take a repeat visual field testand 155,458, or 93.4 per cent, passed. In relation to Group Two (commercial vehicle)licence holders, this equated to 5,066 with 4,421 or 87 per cent who passed.

So, the majority of those that have to take a DVLA visual field test will pass. But, what of those who fail, and who then appeal the decision? During 2010-2015, 3,145 of GroupOne drivers who failed decided to re-apply and of those 1,943 or 62 per cent passed. In relation to Group Two drivers, the numbers passing on a repeat test is 125 of 361 or35 per cent.

When adding the initial passes plus the appeal passes together 94.6 per cent of Group One and 89.7 per cent of Group Two drivers passed their visual field test and were allowed to continue driving.

Although the number of drivers failing is relatively small, when compared to the originalthousands who applied during the years 2010-2015, the impact of losing a licence can be life-changing and can lead to loss of independence, isolation and a greater reliance on others.

Given that a minority of individuals that originally failed had chosen to appeal, the IGA


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DVLA

News Winter 2015

encourages anyone who has failed the DVLA visual field test, and feels it was either notcorrectly administered, or who feels the outcome of the test does not match their ownunderstanding of their individual glaucoma vision loss, to provide their own visual fieldtest result and re-apply to the DVLA. However, it would always be advisable to discussthis with your ophthalmologist or optometrist before you lodge an appeal.

If you were to fail to regain your licence via the ‘informal appeal process’, directly with the DVLA, the only other recourse you can take is via a Magistrates Court (or Sheriff ’sCourt in Scotland) and you should be aware court costs may be awarded against you ifthe appeal is unsuccessful.

One final point, if your driving licence should expire whilst the DVLA are reviewing yourDVLA initiated test result then, under Section 88 of the 1988 Road Traffic Act, you maycontinue to drive until the result is received. (Unless you have been banned from drivingby a court during this period or advised by a health professional).

For our part, we will continue to lobby for people to be given a copy of the DVLA visualfield test so it can be discussed with the applicant’s own consultant or optometrist if thedecision needs to be appealed, and will also see what more can be done to speed up theprocess for re-applying for a licence.

Outcome for drivers with glaucoma reporting to DVLA 2010-2015

Group 1 drivers Group 2 drivers (ordinary licence) (commercial licence holders)

Numbers taking 166,452 5,066visual field test Pass 155,458 93% 4,421 87% Fail 10,994 6% 645 13%From those that failed, 3,145 361and then re-applied for licence Pass 1,943 62% 125 34% Fail 338 10% 77 21%

Absolute pass 94% 90%


32 News Winter 2015

DVLA

New DVLA digital and computer service

The DVLA is currently developing its range of computer services to include the formsand declarations that are required when reporting a medical condition to the DVLA, and those that are needed for re-applying for a driving licence. Part of the process involves gaining feedback from people with glaucoma about how easy the materials are to use and understand.

To help with this, we contacted members from Swansea and Plymouth which was thelocation of two of the testing sites, to see who would be interested in volunteering tohelp with this project. The response was brilliant, with so many members wanting to beinvolved, that we had to put people on a reserve list. The feedback that has been provided will be used to further improve and develop the online service.

Having spent the day in Swansea with five of our members, I can see how this servicesimplifies the current form, and makes it easier for people to complete this correctly. I am looking forward to seeing the next stage of the development and will keep you allinformed about future testing and the launch of the service.

For those who are not computer literate, the paper based version of this form will still be available.

Karen BrewerHead of Communications


33News Winter 2015

Volunteer News

The IGA volunteer project is expanding!

As many of you know, we have been running a pilot project with two groups ofvolunteers, one in Scotland the other in the South East of England, since February thisyear. The results have been absolutely outstanding. Due to the commitment andenthusiasm of our volunteers we have made new contacts in a range of locations locally,with some research showing that 90 per cent of locations approached were happy tohear about, and help, the IGA. As a result The Trustees have approved the gentleexpansion of the volunteer groups. If you have any spare time, and would like to help the Association in the following geographic areas, please do make contact via Richenda Kew on 01233 64 81 67:

• The South East and South London

• Scotland

• Leeds and surrounding areas such as Wakefield, Bradford, Barnsley, Huddersfield and Halifax

• South Wales along the M4 corridor

• Ashford, Kent (We are seeking someone to help with light administrative duties,such as helping to dispatch goods).

Volunteer duties principally involves visiting GP practices, community pharmacies andopticians to see if they would stock our patient information literature. As you knowour literature helps to educate glaucoma patients about their condition, how to usetheir eye drops and encourage their first degree relatives to have their eyes tested. Itis provided free of charge. We also encourage the placement of collection boxes tohelp raise funds. Naturally all out of pocket expenses would be reimbursed.

As you will see from the following comments from our pilot, volunteers have found the experience rewarding with all of the visits being well received by the majority ofhealth care professionals. Most of these professionals had not had previous contact with the IGA.


34 News Winter 2015

Volunteer News

Peter Bower:“Personally I have enjoyed the experience but there is still a lot more toachieve and it is encouraging the opticians and pharmacists have foundthe materials useful and are starting to request further supplies. As avolunteer the support from the staff in Ashford has been brilliant.”

Gwyneth Patel:“I was keen to become a volunteer as I had really valued the guidanceand listening ear provided to me by Sightline whenever I contactedthem about various aspects of my glaucoma and I wanted others toknow about the Association and the work they do. Since becoming avolunteer I have really enjoyed meeting other patients and get a greatsense of satisfaction when they see there may be a source ofinformation and support after they have left the clinic.

“I was surprised, and relieved, to find that opticians and pharmacists welcomed theliterature and agreed to check if patients were able to put their eye drops in successfullybecause I hadn’t known how little they were aware of the problem and relieved theywelcomed the information. What I can achieve seems a drop in the ocean, so I really hopewe are able to increase the number of volunteers and develop the role.”

Pauline Osman:“It's a brilliant role raising awareness of the IGA, the excellent serviceit provides by the funding of research and support to glaucomapatients. It's a flexible role and I fit it around my busy life, taking theinformative IGA leaflets to as many locations as I can such aspharmacies, opticians, libraries etc... who so far have all been verywelcoming. I have been successful in placing two collecting tins tohopefully raise some funds.

“The biggest highlight of this year, for me, has been my involvement in the Southamptonsupport group, the first meeting for 18 months. It was a huge success thanks to theexcellent work of the eye hospital staff. Eryl Williams of the IGA and myself gave our help and support and we are hoping it will be repeated next year.”


35News Winter 2015

Volunteer News

Larry Foster:“My involvement as a recently recruited volunteer will be primarily tohelp provide assistance, where time permits, to the support groupspecifically in Edinburgh but to others in Scotland where speakers withadvanced glaucoma are needed from a patient perspective at meetings,and help needed as a "buddy" etc. I can offer help with development ofthe support group having been a committee member (and currently a

trustee) for the past seven years of a Scottish prostate cancer support group responsiblefor communications, web, buddying and meetings. With regard to the IGA support groupin Edinburgh, I have contributed to a draft proposal containing ideas and thoughts tomove the patient support organisation forward in Scotland. I was diagnosed in late 2014with advanced glaucoma and unfortunately picked up very late."

May Gow:“I was diagnosed in 1995 with glaucoma in both eyes at a routine eyetest. Over the years I have had trabeculectomy operations on both eyes,also experienced laser treatment (which failed to reduce pressure) and,at present, no drops needed. Last year I had a cataract operation on myright eye. Follow up treatment is needed. I am currently awaiting anappointment for this.

“I retired from teaching in 1995 and have been involved in fundraising for cancer research,until three years ago. I was delighted to join the volunteer group formed by John Hughesin Scotland, and to become a volunteer. I have had no difficulty in placing IGA materialswith local optometrists, clinics, surgeries, etc.”

Steve Mohammad:“As an IGA volunteer I have enjoyed visiting appropriate sites inOxfordshire, putting up posters and placing Sightline cards; also givingtalks and planning a fundraising concert.

“This allows me to help the IGA who were so helpful to me when I wasdiagnosed with glaucoma”.


36 News Winter 2015

Words from Sightline

Eye drops and side-effects

We often receive calls and letters from patients with concerns about possible side-effectsfrom the drops they are taking.

Many read the patient information leaflets that come with the drops and assume they will experience the side-effects listed. This is not the case. Many people use their dropsand never experience any side-effects or may only have one of the minor side effects.Manufacturers have to make sure that people are aware of the possible side-effects, so if they do experience any of them, they know to contact their consultant, who willprescribe an alternative drop.

Some people are allergic to the preservatives in the drops. More manufacturers are nowproducing preservative-free drops.

If drops cause your eyes to become red or you experience swollen itchy eyelids, thiscould be an allergic reaction to the preservative in the drop. If this does happen discusswith your consultant the possibility of trying a preservative-free drop instead.

It is good to apply punctual occlusion to reduce the risk of side-effects from drops bylimiting the amount which may enter the systemic circulation. After you haveadministered your drops, gently close your eye and press on your tear duct, in the cornerof your eye, next to your nose, for one minute. Trials have shown punctal occlusionlessens side-effects.

Patricia Barron-GanszczykSightline Advisor


News Winter 2015

Words from Sightline

37

Lumigan update

In our Spring Newsletter we made you all aware that Lumigan 0.03% would not beavailable from 30th April 2015 and was being replaced by the Lumigan 0.01%, however, the 0.03% would still be available as a preservative-free option.

Sightline has received many calls since then from glaucoma patients to ask if the 0.01%drops they are being prescribed are as efficient in controlling their glaucoma as the 0.03%.The answer to this is yes. 0.03% to 0.01% seems a huge difference in concentration but inmedical terms the difference is only slight and in the majority of patients not enough toaffect the efficacy of treatment.

We have also been asked whether the 0.01% drop needs to be put in three times a day, orif three drops should be administered at the same time? The answer to this is NO and thepatient should carry on the same regime as they have always done which is using the0.01% formulation one drop, once a day.

We have contacted the manufacturers who have advised us that administering the 0.01%drop once a day is sufficient in maintaining glaucoma control and there have been clinicaltrials published to justify this recommendation

Following your normal review there may be a very small percentage of patients where the 0.01% has not controlled their condition, or perhaps the glaucoma has advanced, and at that time the ophthalmologist may decide to change your medication.

Sightline


38 News Winter 2015

Clinical Trials

Readers should be aware, whilst we will attempt to update you on interesting researchfrom around the world, it can be up to 10 years before it will be clinically available orimpact on the management of glaucoma.

Whilst the IGA does not sponsor any research involving animal experimentation wereserve the right to publish work from other organisations and researchers in order tokeep our readers aware of advances in the understanding and management of glaucoma.

New diagnostic test?A new test is being developed by scientists that could detect glaucoma ten years beforesymptoms appear. The test uses a type of florescent compound that makes the back ofthe eye ‘glow’ if glaucoma is present.

The light sensitive cells in the retina undergo apoptosis or ‘cell suicide’ in the early stagesof glaucoma and the dye used, sticks to the dying cells and produces a fluorescent light.This is being trialled in humans at the Western Eye Hospital, in London, for the first time.

If a patient is found to have a high number of dying cells, this suggests they are at risk ofglaucoma. It is anticipated these patients will then be given treatment to halt and preventfurther nerve cell damage and prevent sight loss.

This is a collaborative research project between the University College London, theWellcome Trust and Imperial College Healthcare NHS Trust. The research will involve 28 patients, of which two-thirds will have glaucoma, or similar diseases, and one third will have healthy eyes. After receiving one dose of the fluorescent dye via a vein in theirarm, their vision is then monitored for eight weeks. Professor Philip Bloom and FrancescaCordeiro, Consultant Ophthalmologists, are developing the dye as an eye drop, to enablethe test to be performed at the opticians.

Potential new form of treatment?Scientists have found the high pressure in the eye, occurring from primary open angleglaucoma, can cause a trigger between two genes that work together to cause vision loss.Professor Kang Zhang, Chief of Ophthalmic Genetics is heading the research team at theUniversity of California at San Diego, USA. A mouse model and human eyes were used to show how a pair of genes damage retinal cells, which can lead to cell death.

Professor Zhang identified previous glaucoma research focused on lowering intraocularpressure, rather than examining the cause of the retinal ganglion cell death. They arehoping to develop a new class of drugs to treat glaucoma. The team plan to do earlystudies testing the effectiveness and safety of drug treatment before commencing human trials.


News Winter 2015

Research Recruitment

39

Do you have visual field loss?

We are looking for volunteers with visual field loss to take part in a research project that will be comparing two visual field tests. The first visual field test (the Esterman test) is the standard visual field test which is used to evaluate whether individuals meet the UK driving licence requirements, and the second is a new visual field test called Ring ofSight which can be administered on a computer. The research is comparing these tests in subjects who have a normal visual field and those who have visual field loss. Taking partwill involve having your visual fields measured over a period of three weeks, one visit perweek, each visit lasting approximately one hour.

If you are interested in participating, or would like further information, please emailElizabeth Bartlam, [email protected] or call 0121 20 44 104.

We are looking for people who live in Birmingham or the close surrounding area.


40 News Winter 2015

Becky’s Blog

Hello all,

It feels like forever since I last wrote to you. A lot has happened! The biggest being mestarting college again and – wow – it is so much better than it was last year. I’ve alreadymade so many more friends than I did and my courses are so much better. I didn’t evenfeel like I needed a holiday when half term rolled around! (Now, I really do need one –c’mon Christmas!)

I’ve been really getting into my writing recently. I’ve joined a writers’ group with my mum and I take an AS in Creative Writing. It’s so great to be doing the things I love on analmost daily basis. The other courses I’m taking are English Literature (which is hard!) and Media. Did I say how much more enjoyable it has been so far this year?

Last time I told you about not having booked in any driving lessons yet, well, now I have.Bring on January 5th! I’m not overly nervous about starting to drive, but I am verynervous about hill starts – ‘aah’ to parents who scared me about them with their stories!

Again, there hasn’t been any news about my eyes. I don’t even know when my nextappointment is. Sometimes I even forget what it was like to be there every week. I doknow what it’s like to be at the dental hospital a lot though. I’ve finally got my braces off! I had to spend a week wearing my night-time retainers purely for the purpose of mylooks. I have a tooth missing almost right at the front of my mouth so, for now, I have afake tooth stuck in my night retainers and one stuck onto my day ones. You can hardly tell it’s fake at all!

Big smiles!

Becky is a 17 year old who loves anything Merlin, reading, writing and musical. She was diagnosed with glaucoma at age 12.


41News Winter 2015

Support Groups

Addenbrookes patient support group

The Ophthalmic Department at Addenbrookes Hospital Cambridge has been successfullyorganising patient support groups twice a year, in the spring and autumn. Between 50 and 80 patients attend with the newly diagnosed being in good numbers.

Debbie Jankowski has been thedriving force along with hercolleague Penny Glass, whometiculously organises theevent with a varied subjectpresentation. The consultantsand registrars present on variedsubjects on glaucoma. The mostinteresting feature of this eventis the question and answersession where patients reallyparticipate with gusto.

Manchester glaucoma wellbeing group

From January 2016, The Manchester glaucoma wellbeing group will meet on the second Monday of each month (except August) at Henshaws, near to the Old TraffordCricket ground tram stop.

The group exists to encourage and enable people to live well with glaucoma. Ourmeetings always begin with tea and coffee and a light sandwich lunch from 12pm andfinish at 3pm prompt. From time to time, additional educational or social meetings arealso planned elsewhere in the Manchester area.

Individual coaching sessions aimed at boosting resilience and wellbeing are also available upon request and are delivered by a positive psychology coach. If you wish toattend our meeting, or to book a coaching session, please contact Henshaws on 0161 87 21 234 to reserve your place and assist with our catering provision.

New visitors are always most welcome as are accompanying partners or carers. We hope you are able to join us.


42 News Winter 2015

Support Groups

Buxton glaucoma support

The Cavendish Hospital in Buxton, Derbyshire has two community outpatient eye clinicsper week staffed by ophthalmologists from Stepping Hill Hospital, Stockport.

We have been providing glaucoma support meetings since 2007 and have had two thisyear. These meetings rely on the support of ophthalmic consultant, Mr. Yuen, eye clinichealth care assistant, Lynne Fryers and Sight Support Derbyshire volunteer Marge Rose.

A representative from the IGA has attended each meeting since Helen Doe helped uswith our first meetings. David Harris now gives his valuable support bringing presentationequipment, leaflets and examples of eye drop bottles and drop aides.

We rely on funding from Derbyshire Community Health Service for the hire of a meeting room at a local church in the centre of Buxton close to local transport andparking. We also thank the DCHS communications department who arrange mediacoverage to advertise the events in local papers and local radio, the latter being rathernerve wrecking interviews. Pre-recorded thankfully!

We have had two glaucoma support meetings this year in May and October. Although we have comparatively small out-patient clinic numbers, the meetings have attractedpatients from other hospitals who live in the areas around Buxton. Mr Yuen alwaysexplains glaucoma, investigations and treatments, and adds something different each timeto vary the talk. The last meeting covered narrow and closed angle glaucoma, following a request from a patient. We ask patients to complete meeting evaluation forms at theend of meetings which includes requests for future topics.

Other presentations this year covered the review of DVLA regulations, Charles BonnetSyndrome and the role of a local optician in the care of glaucoma patients. An optician,Sarah Hardy, has completed a specialist glaucoma course and will assess suspect glaucomapatients following the introduction of a Glaucoma Referral Refinement Scheme. Thediagnosis of glaucoma is not straightforward and various tests are required, some ofwhich have previously only been done in ophthalmic out-patient departments. This newservice will help reduce numbers of patients referred to the ophthalmologist who do not have glaucoma.

We encourage patients to ask questions, both during presentations and afterwards one to one with the consultant and other staff whilst having a cup of tea.


43News Winter 2015

Support Groups

Last year we had a presentation by the manager of Adult Care in the area. This was veryuseful to the patients, but just as important, the manager was so interested in Mr. Yuen’stalk, and was so shocked by the fact that patients may lose sight if they didn’t use theireye drops, that she asked if we could talk to the rest of the Adult Care team about this.

Norma Ayres, a glaucoma nurse, talked to the Adult Care team at their staff meeting. The presentation explained how the eye worked, common eye conditions affecting theelderly, including glaucoma, the importance of compliance with eye drop treatment andhow to instil eye drops. This was discussed with the support workers and problems werehighlighted. Some patients could not instil their own drops due to disability. Communitynurses were not given time to visit “just to instil drops” more than once a day on a longterm basis. Care workers were not allowed to put drops in. Since this presentation, somecommunity care workers have received training to instil eye drops. Result!

This year Norma has also talked about glaucoma to the local Trefoil guild (older adultGirl-guiding members), a U3A science group, and a local Macular support group.

In June Norma joined Marge Rose from the local Macular Society Buxton and BeyondSupport Group at the Buxton Rotary Fair. This was an opportunity to display informationabout glaucoma and to talk to people about the importance of regular eye tests over the age of forty to detect it in the early stages. The stand also attracted questions frompeople who had glaucoma or who were relatives of glaucoma patients. This is the secondyear we have attended this event and find it a useful way to give information. We also plan to continue glaucoma support meetings and find ways to give information to thelocal community.

Norma Ayres Glaucoma Support Nurse


44 News Winter 2015

Support Groups

Our patient support group model is based on recommendations from the NICE GlaucomaGuidelines published in 2009 and followed up with the NICE Glaucoma Management QualityStandards two years later which recommend that a support group should be initiated by eachhospital. The concept of these groups is to allow patients to meet their health careprofessionals in a relaxed atmosphere, away from the time restricted atmosphere on outpatients, so the condition and treatment can be discussed in more depth. It does require thepresence of at least one of your local health care professionals whether it be anophthalmologist, an optometrist or an ophthalmic nurse.

Gloucestershire 0300 42 28 358

Gloucestershire Royal Hospital, The Redwood Education Centre, Gloucestershire Royal Hospital,Great Western Road, Gloucester GL1 3NN Date: 5/2/16 Time: 2.00pm to 4.00pmHelen Jaggard or Jemma Fisher

WestLancashire

01772 81 36 15

Southport and West Lancashire Support Group,Royal Clifton Hotel, Windsor II, The Promenade Southport • Pam Ladlow Date: 27/1/16 Time: 2.30pm and23/3/16 Time: 2.30pm

This page contains details of support groups around the country which have been organised at the time the newsletter went to print. There are, however,

other support groups around the country which can be found listed on the pages that follow. Updated support group details from across the UK can be found on the IGA website(www.glaucoma-association.com) or by calling Sightline on 01233 64 81 70.

Updated Support Group details from across the UK can be found on the IGA website www.glaucoma-association.com

01205 44 56 26Pilgrim Hospital, Lecture Hall, Education Centre, Pilgrim Hospital, Sibsey Road, Boston PE21 9QSDarralynne Stell • Date: 26/2/16 Time: 1.30pm

Lincolnshire


45News Winter 2015

Support Groups

Area Organised by Contact Name Contact Details

Buckinghamshire Milton Keynes Hospital Jill Kimber 01908 99 55 23

Cambridgeshire Addenbrookes Hospital Deborah Jankowski 01223 24 51 51

Cheshire Leighton Hospital Debra Noden [email protected]

Cornwall Royal Cornwall Hospital 01872 25 39 87

Derbyshire Cavendish Hospital Norma Ayres 01298 21 28 50

Devon Royal Devon and Carly Slade 01392 40 60 45 Exeter Hospital

Dorset Royal Bournemouth Peter Clark or Jackie Spence 01202 72 60 36

East Sussex Conquest Hospital Huma Thomas 01424 75 52 55 extn 8442

Sussex Eye Hospital 01273 60 61 26

East Yorkshire HERIB Kay Slingsby 01482 34 22 97

Essex Broomfield Hospital 01245 44 36 73

Essex County Jocelyn Murphy or Lynn Barker 01206 74 46 72

Southend Hospital 01702 43 55 55

Greater Stepping Hill Angela Hilton 0161 48 31 010Manchester Hospital

Hampshire Southampton General Alex Macleod or Isabella Nica 023 80 77 72 22

Hertfordshire Barnet Hospital Tracy Gavin 020 82 16 49 62

Kent Bromley Osteoporosis Stevie West 020 83 13 98 35 Group


46 News Winter 2015

Support Groups


Kent Kent Association Fran Smith 07872 41 80 02 for the Blind

Maidstone General Margaret Gurney 01622 22 63 14

Princess Royal Chris Wilsdon [email protected]

QEQM, Margate Nicola Anwar 01843 22 55 44 extn 63472

Queen Mary’s, Sidcup Maria Moutsou 020 83 02 26 78

Lancashire Care UK Emma Mawson 07918 67 39 99 [email protected]

Royal Bolton Hospital Cathy Settle 01204 39 03 90 extn 48069

Liverpool Royal Liverpool and Vicki Travers 0151 70 63 968 Broadgreen University Hospital

London Central Middlesex Jenny Coelho 020 89 63 71 29 Croydon University Karen Heathwood 020 84 01 30 00 Hospital

Croydon Vision Regan Ruther 020 86 88 24 86

King’s College Viviane Brackenbury 020 32 99 16 68

St Ann’s Hospital Gissel Tapper 020 82 11 83 23 St George’s Hospital Edmore Mcube 020 82 66 61 15 or Christine Real 020 82 66 61 19

Western Eye Zena Rodrigues 020 96 66 66 66

Whipps Cross Katy Sommersgill 020 85 35 67 10


47News Winter 2015

Support Groups


Manchester Henshaws Society Adrian Brooks 0161 87 21 234 for Blind People

Middlesex Ashford Hospital Maggie Lewis 01784 88 44 88

Hillingdon Hospital Amar Ghattaora 01895 23 82 82

Scotland Aberdeen Royal Breda Donnelly 01224 55 12 93 Infirmary

Hairmyres Hospital Caroline Ferguson or 01355 58 46 30 Jackie McGowan or 01698 36 63 76

Ninewells Hospital Laura Forbes 07949 14 07 58

Princess Alexandra Dr Pankaj Agarwal 0131 53 61 000 Eye Pavilion

Queen Margaret Shirley Miller 01383 62 36 23

RNIB, Edinburgh John Hughes 07875 31 29 45

Royal Alexandra Susanne Scott 0141 31 46 988 Hospital

Stirling Community 01324 56 60 00

St John’s Hospital Dr Pankaj Agarwal 0131 53 61 000

Wishaw General John Hughes 07875 31 29 45 Hospital

South Yorkshire Sheffield Royal Society Joanne Arden 0114 27 22 757 for the Blind

Staffordshire Queens Hospital Sally Jackson 01283 56 63 33


48 News Winter 2015

Support Groups


Staffordshire Stafford Glaucoma Shankar Chappiti 01785 23 02 40 Club or Kellie Cowlishaw

Surrey Royal Surrey Teresa Butler 01483 57 11 22 extn 2089 or [email protected]

Tyne & Wear Sunderland Eye Pauline Stores 0191 56 56 256 Infirmary extn 46335 Wales Abergele Hospital Michelle Higgins 01745 44 83 30 extn 2439

Bronglais Hospital Howard Jones howard.jones@ or Teleri Garner sightcymru.org.uk 01970 62 47 11

Cardiff Institute Ruth Rydderch 07787 66 69 04 for the Blind

Gwynedd Hospital Bethan Scriven 07884 26 71 95

Neath Port Maureen Griffiths 07884 31 09 92 Talbot Hospital

Princess of Wales Karen Phillips [email protected]

Singleton Hospital Sue Neale 01792 20 03 90

University Hospital Ruth Rydderch 07787 66 69 04 of Wales

Ysbyty Cwm Sue Brooks 07884 36 22 64 Rhondda Llwynypia


49News Winter 2015

Support Groups


West Midlands Coventry University Jay Pankania 024 76 96 64 91 Hospital Good Hope Hospital Sarah Morris 0121 42 42 000

Heartlands Hospital Carole Atkins or Clair Rea 0121 42 40 543 Kidderminster Helen Hipkiss 01562 51 23 82 Treatment Centre extn 55369

New Cross Hospital Mary Stott 01902 30 79 99 extn 5807

Russells Hall Hospital Julia Phillips 01384 45 61 11 extn 3649

Solihull Patient Carole Atkins 0121 42 40 543 Support Group West Sussex Worthing Hospital Annette Brampton 01903 20 51 11 extn 85658 or Julie State

Worcestershire Alexandra Hospital Julie Manning 01527 50 79 15

Worcester Sara Ruck 01905 76 33 33 extn 85658 Royal Hospital


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